Senate Budget and Fiscal Review Subcommittee No. 3 on Health and Human Services

The Senate Budget Subcommitee number three on Health and Human Services will come to an order. Good morning, everyone. The Senate continues to welcome the public in person and via the teleconference service for public comment. For individuals wishing to provide public comment, today's participant number is 877-226-8163 and today's access code is 736-2834 we're holding today's Committee meeting here in the 1021 street building.

I ask the rest of the Members of the Subcommitee to be present here in room 1200 so we can establish our quorum and begin our hearing. Today we'll be hearing budget proposals from three departments, the Department of Rehabilitation, the State Council on Developmental Disabilities, and the Department of Developmental Disabilities. Before we hear presentations on these proposals, well not before, throughout the presentations, we will have one oversight hearing, which I'll go more into it as it comes up in the agenda.

So today to kick us off is going to be an overview on the Department of Rehabilitation, and I would like to welcome the presenter. As we're welcoming them, I do want to note that we have a modification to the order of the issues on the agenda today. After we review issue three under DDS, we'll jump to issues 11, 12 ,and 13 on the agenda.

Then we're going to come back to item five. A huge thank you to our ASL interpreter who has joined us and will be here with us today. As I mentioned, we're going to go back to this first issue on the agenda, the overview of Department of Rehabilitation. And I welcome Joe Xavier, the DOR Director, Ryan Anderson from LAO, and Kia Cha from Department of Finance. Perfect.

Can I begin?

Welcome. Go ahead.

Okay. Thank you. Well, first of all, good morning to you. Good morning to the Members. Appreciate the opportunity to be here and share about our programs and services, and, of course, to respond to any questions that you have. Joe Xavier, Director for the Department of Rehabilitation. I come to this role as a former consumer of the Department of Rehabilitation, a former business owner, and certainly now an executive with the department for a number of years.

I also have with me today Chief Deputy Director Victor Duran, who will also be sharing some information on the next topic on the agenda. So the agenda does a really good job of providing an overview of the department and the programs and services. I just will take a few minutes and highlight a number of the elements that are there for the benefit of the Members.

Let me start with, as a whole, the Department of Rehabilitation works to provide employment and the ability for individuals to live in the community of choice with purpose and dignity. We work with a range of partners to do that, and we serve about 130,000 individuals through our collective programming. Our vocational rehabilitation program provides services to individuals with all disability: sensory, physical, cognitive disabilities, learning disabilities, et cetera, et cetera.

And I think one of the things that's really important to keep in mind about our department and the services that we provide is who is tomorrow's consumer? Who's the individual that comes to our doors for services tomorrow? Well, it's that infant that will be born today with the most significant disability that can largely live a life of little to no expectation of getting employment.

It's that individual who's going home tonight, who regretfully is in a severe vehicle accident, and tomorrow morning is a quadriplegic, or the individual injured in service to community, to a country that acquires a disability. And then of course, the individual, because of illness, can lose their eyesight, lose a limb, have a debilitating condition that brings a disability to them.

And the other person that I really want to lift up in this conversation is the individuals that are living with hidden disabilities, that are often hidden in the shadows, and they will at times come to us for services. And so it's a very important population that we want to continue to lift up. Each of these individuals will have a very different path of how they get to us, but they all are seeking the same thing. It's the opportunity to become employed.

It's the opportunity to be accepted in society, to contribute to community, and to be gainfully employed. And one of the things that we will say routinely is that we leave no one behind. There is employment. There is opportunity. There is independent living for everyone. I want to talk a little bit about employment. Employment is prevention. Employment is intervention, and employment is recovery for individuals. Right? Employment creates a sense of belonging, of feeling valued, of contributing. And employment provides social connectivity for folks.

One of the things that we are continually learning and emphasizing more and more is that employment is the social determinants of health. People that have jobs are in much better circumstances when it comes to their health and access to health care opportunities. When we think of employment, there's three essential phases that I would lift up. One, from birth, starting with the expectation and the belief that the individual with the most significant disability, such as my own self, will have that opportunity to become truly, gainfully employed.

It's important because it starts the development of the individual to truly be able to get to and sustain employment. There's what we call the transition age. There's that young at the adolescence, the teenager, the young adult, developing the hard and refining the soft skills that will ensure enable them to be employed. But at the end of that, there's the hiring manager, because without that job hire, there is no employment. When we talk about our services, each individual experiences the same disability differently.

And therefore we individualize the services that we provide to the individual, where they are, when they come for services. We collectively develop the plan that gets the individual into the competitive integrated employment. And as such, the path, the duration, the complexity travel is going to be different for every individual. As an example, think of the individual at Intel that loses their job versus the individual who becomes a quadriplegic tomorrow morning. That path is going to look very different in terms of getting to employment.

The services that we provide, as I mentioned, are to gain employment, to retain employment, and to advance in employment. We serve within employment services about 100,000 individuals annually. And outside of the pandemic years, about 10,000 individuals go to work each year. We deliver our services through 14 offices or 14 regions across the State of California.

We have as one of our services services to students beginning at the age of 16, which is really introducing them into employment, and to really start to advance their hard and soft skills, which enables them to get into and keep employment. All of the work that we do is focused on competitive, integrated employment. So, let me talk very briefly about our independent living programs.

The services provided advanced the Olmstead Decision, enabling individuals to live in the community of choice with purpose and dignity in the least restrictive setting. The services support diversions from individuals becoming institutionalized. They facilitate the transition of those individuals who are institutionalized into the community. We do that through a number of programs. We have 28 independent living centers with some 60 locations serving about 26,700 individuals. We have our traumatic brain injury program that is serving individuals through some 12 different sites because of the expansion.

And then we have our older individuals who are blind programs serving individuals over the age of 55 with independent living skills that are categorical to that population. About 4,600 individuals are served there. So there was a number of questions that we were asked to speak to. I can stop here or continue with those.

Please continue.

Okay, thank you. So we were asked to provide an update on the integrating employment into recovery program. So, it is a pilot program that responds to the opioid crisis. It essentially provides treatment or training to the substance use disorder workforce to really start to embed the idea of employment and treatment running concurrently with each other. And it helps the workforce understand what the vocational rehabilitation resources are that are available to the population.

This also will embed vocational rehabilitation staff in four pilot sites so that we can engage in that employment and treatment concurrently. We are working with the program execs across the state to identify the four pilot sites. We're beginning to embarking on the development of the curriculum for training of the workforce and we are making an adjustment of opening, combining two phases. We were initially going to do stand up two pilots and then the second two.

We're going to combine those two and then roll those out at the same time in the coming near future. So I also was asked to speak about the Community Living Fund. And the Community Living Fund is a one-time $10 million award which is to really help advance the master plan on aging. It is provide services to individuals of all ages with all disabilities to transition out of institutions or keep from going institutions where they're not eligible for other services.

Our goal is to serve 1,300 plus individuals and we have awarded grants to 28 communities, 28 organizations, covering 41 counties. We're targeting outreach to those counties that don't have services, and then we are also providing services like peer coaching and other services that we can do remotely at statewide level. We also will be providing some training and technical assistance to the 28 community based organizations in the coming weeks. The next item was to talk about the expansion of the HCBS TBI program.

So we have made awards from that expansion to 12 agencies. We are now serving 35 of the 58 counties with the services. Virtual services are also available for peer support and community integration beyond those counties. We are closely monitoring the expenditures.

As of March, we have 7,500 of expenditures that have materialized and we expect that in the remaining 11 months we're going to have an expansion of the expenditures. And we have initiated monthly auditing and monitoring to provide targeted technical assistance to the organizations so that we can ensure that we're fully expending these funds. And then, of course, we also have a contingency plan to redirect funds as needed to ensure that we're fully expending those funds by the end of the timeline.

So I will stop there and glad to take any questions that your have.

Thank you so much, Director Xavier. My first question is regarding the last part you mentioned regarding the HDBS funding, and you mentioned the redirecting of funding. Is there any idea where you would potentially redirect those funds to? And the second part to that is 11 months. I mean, we have to expend it by December. We're getting closer and closer to that. In the last report, in September of 2022, the Department had only expended about 200 to 500,000 out of the 5 million. Could you touch a little bit more on the plan to spend the rest?

Yeah. So the expenditures are now up to 700,000. And yes, we are very much aware that we need to make sure that we're doing this in a very short window. So as I mentioned, one of the things that we're very actively doing is engaging the existing 12 providers and providing them with all of the assistance they need to make sure they can spend those funds. Where an organization may not have that capacity and may not be able to meet that timeline.

That's where we will be able to take some of those dollars and redirect them to other entities that have that capacity and will be able to expend that. We have until January to make sure that that is happening. Yes, we're working on tight timelines, but we do believe we'll be able to fully expend these funds in that window of time.

Thank you. Staying on this topic, can you talk to me regarding how the funding for these TBI programs are addressing the unmet needs to the current TBI services? How are you assessing the statewide need for this program?

So one of the grants that we received a number of years ago is for the Traumatic Brain Injury Board that is doing some work with us on that front. We've conducted a survey of the community to help identify where those needs are. And so that's part of where we're identifying where those unmet needs come from. And I also would invite Victor, anything you would add to this, you're a little closer to that?

Sure. Happy to do so. Thank you for the question. It's a multifaceted issue that we've been hitting from a couple of different directors.

Sorry, new member, can you say your name?

Victor Duron, Chief Deputy Director for the Department of Rehabilitation. Identifying the need for survivors of traumatic brain injury is a tricky challenge that our partners across the nation have been working on. And one of the grants through the Administration for Community Living has allowed us to stand up an advisory body that includes individuals with lived experience. One of the subcommittees has been working on assessing need, and need can come in a lot of different forms. How does a TBI's symptoms present?

Do they present in a way that seems like a co-occurrence of a different condition? Is the current access to the health care that the individual has adequate to meet their needs, or do they fall through the gaps? Right. And so a couple of initiatives that we've launched using the federal grant funding that we've received is both a qualitative survey to get a sense of some of the needs that survivors and loved ones of survivors and providers to survivors have articulated.

And then we're continuing to work on how to figure out what is the universe of people who have a traumatic brain injury, and then within that universe of people, who are the folks who need services because they are falling through the gaps? So to address your point about how are these funds in particular supporting that area, given that these are one time dollars.

We're working very closely with our grantees to ensure that the focus of these resources is around capacity building, recognizing that when these funds are over, those entities that receive the dollars, the funding goes away. But those entities don't. They and their staff and the services that they provide will continue through their other resources.

So how will they leverage these dollars so that once they're over, they have increased their capacity through training, through onboarding of additional staff, through acquiring things like assistive technology they may not otherwise have, and through broadly establishing things like peer resources, support groups, things that can be established and stood up with one-time funding and then continued onwards. So those are some of the things that we're looking closely at.

Are you able to share? Do you have anything highlights from the qualitative survey? Any common themes that came out of that?

There's a few that came out of that and we're happy to provide additional information offline because it's a lot more robust than I probably have off the top of my head. But of course, a few of the things common themes that occurred that came up are, oftentimes, the specific need of the individual falls in between gaps of what the different systems serve. Because it's not exactly a behavioral health. Sometimes it can be a co-occurrence with a behavioral health condition.

For example, a veteran who acquires a brain injury and comes back and reintegrates into the community. The symptoms of an undiagnosed traumatic brain injury may present very similarly to the symptoms of post traumatic stress syndrome. However, the strategies to effectively treat PTSD versus similar symptoms that are the result of an acquired brain injury might be very different. So misdiagnosis, co-diagnosis, and unraveling, that is one issue. The other issue that came up is caregiver support.

So my loved one got into a car accident or took a spill, or my aging parent took a spill, right. And they're starting to present symptoms. Is it a traumatic brain injury or is it dementia? How do I unravel that co-diagnosis, misdiagnosis? And then as a caregiver, how do I get support, right? So I can continue to provide for the needs of my loved one, but also get some kind of education awareness, understanding of how best to do that.

Thank you. Senator Eggman, any questions? Great. Well, I really thank DOR. Thank you for the overview. We will now move on to the State Council on Developmental Disabilities. I will ask the DOR to remain available for this discussion and for the Department of Developmental Services to also join. Joining us here today is Aaron Crutchers. Don't know if there's anyone else. You're Aaron. Great.

Good morning, Madam Chair. Aaron Carruthers. I answered it, however you'd like to say it. I am the child of parents with developmental and other disabilities. I'm a person with disabilities myself and the parent of a young man with disabilities. I'm also the Executive Director of California State Council on Developmental Disabilities. The State Council on Developmental Disabilities exist in federal and state law. We're fully funded by Congress for the advocacy work that we do.

We are a state department, but we're independent of any other department or agency administratively reporting to the Governor. The council itself is 31 governors appointees who are a third people with developmental disabilities, a third parents and family members, and a third agency representatives. A number of them are my council members and members on this panel today. How we do our work is by asking the community what is it that's a priority to them.

Every five years, we put out a survey, and because of the survey, we've actually been able to see really a seismic generational change in what people want. Ten years ago, in 2011, it used to be that people would say, we want to get our benefits and we want you to help us keep our benefits. And that really was the answer for many generations and decades before.

But then in 2016, something interesting happened where we saw the answer of employment jump to the number one answer, I want employment. And we repeated this survey in 2021. We got employment, housing, education. Really, the answer was, I want a full, well rounded life. We attribute this change to the integration generation. So as people and children are integrated in schools, they have different expectations for themselves and of those around them. That generation is now in their early 20s, late 20s. They're having children of their own.

So they have different expectations for themselves and for their own children who may have disabilities. From that, we worked on a policy in 2014 that the Legislature adopted, Governor signed to make California an employment first policy. This is an aspirational policy, but important one that states, we begin by believing everybody wants to and can work.

So appreciate all of the work that the departments here have done toward that policy and appreciate, Madam Chair, for agendizing this important topic of phasing out sediment wage. In moving California forward in employment, we need to promote good practices and eliminate harmful practices. And sub minimum wage is a practice from World War II that really was the best, most enlightened idea that we could do at that time. But we are now different best enlightened minds and have different views of what can be accomplished.

So we are in the process. In 2021, Senator Durazo, thank you to her leadership, authored legislation to in the practice of sub minimum wage in California. It's really both a civil rights issue and a labor issue. And we thank the Senator, the legislation, the Governor, and the Administration for their deep commitment to the policy. Now we're in the fun part. How do we make it actually happen? So the phase out itself has some dates in statute. One of those dates is in January 2022.

There'll be no more 14 c-certificates issued. January 2023, we, the State Council, are to issue a transition plan, which we did. In January 2025, no one with developmental disabilities can be paid less than sub minimum wage. That's what's in the law. But now let's talk about the plan, which goes to the core of your questions, Madam Chair, the specifics of the plan. We created a plan that was the product of national statewide subject matter expertise included.

It was an open, transparent process that included the voices of providers, family members, and most importantly people with developmental disabilities into what is their best thinking. We create this plan and present the plan to the departments and to the Administration. But it really is up to the departments and the Administration to decide on the best path and best plan for themselves. We advise, they decide and they carry out.

So my recommendations, what I'll talk about now are the recommendations and the advisement from the people who came together to create this plan. The plan is looking at what do we have at our disposal to move people out of sub minimum wage and win? So timelines, and looking at that, some of the timelines are moving pretty quickly because it's a two year phase out plan.

In April 2023, we recommend that there is an internal analysis by the departments and agency to look at current rate structures to decide which rate structures will actually facilitate movement toward the goals of Senate Bill 639. The next one, also in April 2023, is that the departments should develop their own internal transition plan. Looking at their resources, the recommendations in the plan, what are they actually going to do to carry it out?

Also April 2023 is communication plans should be formalized so there's communication for people who are being impacted by this upcoming change. Two recommendations by June of 2023. One is to form a community of practice, of smart minds expertise to aid and guide the state as they move. Also June of 2023, develop a model employment service contract that can be used. Moving to July of 2023. Look at those sites that have adopted early. When there's ever change, we always know that there's some early adopters, some middle adopters and some stragglers.

Let's learn from those who are moving already. And I think we're already seeing that the numbers are changing, as the Committee analysis shows from the 6,000 that we knew of at the time of writing and publishing the report to less than 6,000 now. So there's already movement, there's already change. People are complying with this law quickly. Let's learn from those who are doing it. Early September of 2023 established a centralized data collection system.

We know who the people are, but the way that the data works, I believe there's an informal way to collect data. Sometimes we look to the formal data collection systems. However we do it, we need to know who people are and where they're moving. Because the statute currently mandates reporting on what happened to people who are in sub minimum wage. By January 2024, we recommend if there's 6,000 people in January 2023, a year later, there should be half.

That way by January 2025, there'll be zero people left in sub minimum wage. Additionally, we recommend that there should be a goal that competitive, integrative employment, a minimum of 20 hours is the goal of anybody who is served in the system. January 2025, everybody who's working in this should be certified under a national standard for employment. And of course, January 2025, the law says this program ends and nobody else can be paid under sub minimum wage. So those are benchmarks.

We have, in addition to the benchmark, some recommendations to accomplish the goal and the plan. Part of that is coordination among agencies and departments. The analysis and the departments themselves will talk about it. There's many, many programs that are underway and that will benefit and move people. It's a matter of coordination of those programs that I think will be helpful.

So our number one priority is a recommendation to create an Employment First office within the Health and Human Services Agency that would have the ability to coordinate the many, many programs, make sure they're being maximized, fully used, leveraged with each other for the best outcomes. Additionally, this office would have the ability to speak to other departments who are impacted, such as Labor Agency and the Department of Education.

So reaching across its departments within the agency and across to other agencies would be the authority of this Employment First office. We want to thank Senator Durazo again, also for her leadership. I believe she has or will be submitting a letter to championing this idea as a recommendation to implement coming out of this report. So people are moving now and programs are in place to help people transition.

And that's really, I think the focus of the questions you asked is who are they, where are they going, and how will the programs benefit them to move them there. So thank you to the Chair for your focus on this topic. And like I said, our report lays out one approach. It really is up to the Administration, the departments, to decide which path they'll take. Thank you.

Thank you. Before we move on, can we establish quorum?

[Roll Call] We have a quorum.

Thank you. I'm going to do questions. First, State Council, then we'll hear from DOR, questions, and then DDS questions. So I'll start on this question. You know, if you can help me understand, SCDD is responsible, and I'm going to read this, is responsible for developing and implementing a state plan containing goals, objectives and activities. Correct me if I'm wrong. The group was put together made of experts. You described the backgrounds, and the recommendation is to put together another body with the same background?

The recommendation is to continue the work that was brought together for this plan. Actually, it's not even a recommendation to continue this. The stakeholder group that was brought together for the plan, the recommendation, our number one recommendation is to have a coordinating entity or focus with an agency, take the issue out of the implementing departments, and have coordination at an agency level.

I'm a little frustrated if we call for a group to put together to come up with ways to reach a goal, and I'm told, well, you have to put another body to answer those questions. It's difficult to see how we've made progress in this. It seems like there aren't specifics on how to implement the transition.

Thank you for that clarification. If that's the understanding I've left you with, then my apologies. I've misspoke. The plan is clear. The plan is actionable. The plan is specific. We as a department in our organizational structure don't have the authority to carry out and implement the activities in the plan. We can present it to the Administration, present it to the departments, present to the Legislature, and ultimately the departments and the Administration need to decide how they're going to carry it out.

I also think there's room within the plan for the department's own creativity in knowing their programs and how to carry it out. My conversation with the departments have been very encouraging. There's an ambition. I experience a real belief in this policy, an ambition in the value of the policy, and a focus on implementing it fully and quickly. Our plan lays out one way to do it. The departments are the ones who actually implement it.

Colleagues, any questions? We'll move on to hear from DOR if you can answer the questions. Thank you.

Yeah, Victor, Chief Deputy Director Duron is going to start the conversation for us. Thank you.

Thank you, Director. Thank you, Members of the Committee. So I'll begin with your first question about the role of DOR with respect to serving individuals employed under 14 C certificates. And while, yes, the Department of Rehabilitation has a unique role in serving that specific population, I do want to reiterate what Director Xavier shared in the overview, which is that all of our employment services programs are exclusively in the service of competitive wages, so above sub minimum wage, and integrated settings.

However, we do have a specific role that we play for those individuals in sub minimum wage settings. So the Department of Rehabilitation in California is the designated unit to provide what is known as CCINR, which is Career Counseling Information and Referral. And what that means is that employers of individuals under 14 C are required to make available this service to those individuals employed who make less than federal minimum wage, which is an important distinction. And how that looks is the DOR.

Those employers report out on the number of people that they employ at sub federal minimum wage, and the Department of Rehabilitation provides these career counseling information referral services in the hopes of encouraging individuals to pursue competitive, integrated employment. And those who are interested, we can enroll in our vocational rehabilitation services.

The way that the requirement plays out is in the first year of employment in sub federal minimum wage, they must receive the services from the DOR twice that year, and then every year, annually thereafter, as long as they remain in sub minimum wage. So we continue to provide those services, and since 2016, we have provided over 20,000 instances of CCIR services, although I would note that that is instances of services not unduplicated individuals served.

In addition, we provide and make these services available to anyone in 14 C settings, not just those individuals making less than federal minimum wage, even though that is the legal requirement, because we know that there is that gap between the state and federal minimum wage. And as a result of these services, we have, excuse me, in this last year, we have provided services to 3,353 individual consumers. And so far, we have enrolled over 1,600 of these consumers into our vocational rehabilitation services.

And of those enrolled, over 440 have exited into competitive integrated employment. I welcome any questions on this first item, or shall I continue to the next question? Okay, thank you. The other topic I welcome the opportunity to speak to is our Disability Innovation Fund Grant. So, this is a new grant that we have recently competed for and acquired.

It is federally funded, and the intent of the grant is to look at innovative ways of service delivery, specifically for individuals who are either in sub minimum wage or who may otherwise go into sub minimum wage.

So we're very excited about this innovative opportunity, and I want to clarify, though, that this grant, which we just acquired, runs from October of 2022, so very recently established through September of 2027. It's a long runway, and the intent is piloting innovative interventions, researching them in collaboration with academic institutions, in order to figure out what are the most effective approaches to ensuring and supporting competitive, integrated employment.

And so, while we certainly expect that individuals currently in sub minimum wage will benefit from this initiative, we know that this initiative, on its own, is not going to be the answer. It will run several years past the 2025 deadline for phasing out sub minimum wage. But where this is really going to have an impact, and where we're really excited is sub minimum wage will end.

However, there will continue to be young people aging into working age, and we want to make sure that after sub minimum wage is over, those young people go into competitive, integrated employment and not the couch or some other setting, because the sub minimum wage option is not available. So we're really excited that this grant, and in partnership with some academic institutions, will hopefully shed light on some new interventions.

We currently plan to launch this program in two counties in Orange County and San Diego County, with the intention of enrolling at least 400 individuals over the course of this program.

Thank you. Could you speak to how you're taking advantage of under federal law, you have to counsel individuals two times when they enter and then one time annually. How are you taking advantage of your current program in helping with transition?

Absolutely. Great question. So one of the greatest things that that requirement gives us is access. So it gives us a great way to know where many of these individuals are to build relationships with the employers and to transition folks from the CCIR service to our main VR program, which is always in pursuit of competitive, integrated employment.

It also allows us to engage with the families, engage with the businesses, and now that the phase out of sub minimum wage is happening, to have targeted conversations with all of those parties. So we are looking forward to continuing this effort, which has been in place since before SB 639, and focusing it now that we have this opportunity to target that effort in alignment with the ending of sub minimum wage by 2025.

Would you say you have individualized case management for the approximately 4,000 individuals?

So right now, what we provide is the information and referral. It's a touch point, but it's still a choice that the individual has to make to enroll in our services, and that's why we keep coming back. So let me share an example. We might approach someone in that first year, and maybe that sub minimum wage environment that they're in feels very comfortable, it feels very safe.

That's why we keep coming back, to keep providing more information about the opportunities that are out there for competitive, integrated employment. And when that individual is ready, we can enroll them in the VOC rehab program, which does provide individualized, tailor to them services, and not just the counseling, but to address any auxiliary needs that they may have in order to obtain and retain competitive employment.

Questions from my colleagues? Senator Eggman.

So, as I'm understanding, so the department is responsible for the vocational rehabilitation, but you're saying so there's a lot of folks. I work with a client once who was at Howard Training Center in Modesto. Right. So you have to have that relationship with Howard because that's oftentimes where people are there full time for a day treatment. So you have the relationship with all of the agencies that are providing ongoing care services, and then you try to get them into the program. Can you walk me through that just a little bit?

Director Xavier?

Yeah, let me start. If I could start that piece of that. So I think what's really important to understand about the 14 C, what we call the 14 C, this sub minimum wage setting, is that even though the individual with a disability is in that setting, the employer has a number of responsibilities here when it comes to the work that we're doing around CCIR. It is the burden of the employer to make those individuals known to us at the Department of Rehabilitation.

So as Victor pointed out, we're very much benefiting from that, to be able to know where that individual is and to engage with that individual and continue, not just one time without reoccurring. So yes, the relationship is important with the individual, and yes, the employer has that responsibility to ensure that we are having access to those individuals, to continue to provide the services year after year until they are no longer in that sub minimum wage setting.

And through that process, do we subsidize with the employers? Is that what we're currently doing, or is that the plan going forward for somebody who has somebody working at sub minimum wage? Is there a makeup of that difference?

A sub minimum wage is not a subsidy in the context of providing an offset for the employer. The sub minimum wage setting is essentially where the employer, under the federal law, has the ability to pay me a portion of the minimum wage based on my ability to be productive. So if I'm only 50% of the way, then they have that ability to only give me 50% of the pay. Right now there are programs.

But that is current? That's what we're phasing out. Is that correct?

That's what we're phasing out, correct, now. And I'll defer to our colleagues at Developmental Services. We have a number of programs that do incentivize employers to move individuals into that competitive, integrated employment. So I'll defer to them to speak specifically on those programs. Through ourselves, we use for the individuals eligible for our services and that choose to come for our services, we use paid work experiences, particularly for youth, which we will pick up that salary for the employer.

So the employer gives the individual that opportunity to go to work. We do that in competitive and integrated settings, not in the sheltered workshop settings. We also do provide paid work experiences for students, and we do have what we call on the job training, which again, offsets the salaries for a period of time with the idea that this leads into full time or as much of an employment as the individual is pursuing.

Okay, it feels like it's going okay. And I'll say I'm supportive of everybody making minimum wage or more, but I struggled some with that just because I think just take work and feeling of purpose is so important for people. And I don't think without support, employers are going to pay somebody like, as you said, who can maybe perform at half the level, the same rate as somebody. What has been the response from the employment sector?

I think we're talking about employment from sort of two different lenses. Where we primarily focus as a department is the employer that's in the competitive, integrated setting, not in the sheltered workshop setting. So that's a continued, continued effort. I just want to be really, I should have said this at the upfront. Moving into a competitive, integrated employment is the right thing to do. Now is the right time to do it. This will not be a light switch. It will take time.

We will get there and it will evolve. Right. Big piece of that. And I said this at the outset when I talked about the phases of employment. Is that hire manager. Right. And it's the hire manager, not because I can't do the job, but a lot of times because the hire manager did not understand how I could do the job or even believe I could do the job.

And so part of the work that we're doing and that we really need to continue to do is to engage with the business community. When I say business, I mean that very broadly. In business, when I talk about business, it's anybody that makes or affects a hire. Right. Because whether you're working for government, local, federal, state, whether you're working for nonprofits for profits, it's a hiring manager. So how do we help to continue to shift that culture in the business community?

Again, broadly, that when they see an individual with a disability coming, they're not looking at what the limitations and barriers are, but they are truly looking at what's the potential, what they can do. There's a number of strategies that we use on that front. For example, customized employment. Customized employment is a tool that we use where we go into a business setting and we help the business create a job that might be tailored specific to a person's disability, that enables it from that job. Right.

But those are to be above minimum wage settings. Right. And so that's work that we continue, which is why I emphasize up front the three phases of employment. Right. And I will say the other one that's really important is that first phase, that earth, not earth, birth to adolescence, to working age. Right. Did I grow up with the expectation that I couldn't, wouldn't go to work? Did my peers in school see me as having that talent and potential? So again, a lot of great work is being done. A lot more needs to be done, and we're very much committed to that.

Great. I guess my concern, so what I'm hearing is that there will be a place for everybody that people aren't going to fall off and then be sitting at home watching television, as you alluded to.

That is absolutely our goal. This is not going back to sitting on the couch. No.

All right.

And again, no light switch to this. Lots of work, but it is the right thing and we will get there.

Thank you for all your work.

Senator Roth.

Thank you, Madam Chair. This is a very, very important program, and I commend you all for your work. And it's hard work, but I'm glad that you're doing it. You've probably answered this question, but I just want to ask it just to make sure that I'm clear. So as these sub minimum wage programs come to an end eventually, do you expect that there will be or may be individuals who simply do not transition to this competitive, integrated employment situation? And if so, what happens to them?

So I'm going to start with the belief that we can and must find employment for everyone. I think it'd be fair to say that, have we figured that out for everybody absolutely across the board? Not yet. Still a lot of work to do on that front. I think in terms of, to your very specific question, if somebody--we know when subminimum wage ends and that individual has not been able to attain employment, what happens?

In my mind, we continue to work with that individual until we can get them ready for the employment. We continue to provide them with the services. And it's not just us. Certainly our colleagues at Developmental Services have a number of programs on that front. And again, I'll defer to them to speak to those specifics.

But the subminimum wage employment will have to end.

As I understand the way the law is written, come January 1 to 25, the employer no longer has the authority to pay a subminimum wage.

Okay. Well, thank you for your response. Thank you, Madam Chair.

Thank you. We're going to move on to DDS to answer the questions. Thank you.

Thank you, Madam Chair. I'm Nancy Bargmann, Director of the Department of Developmental Services. I'm going to go ahead and answer the two questions that are in the agenda today, and really following my colleagues, I really appreciate Aaron Carruthers, the work that the council does and the guidance and the recommendations has just really been very helpful through the years in so many different fronts, especially in employment, and then our colleagues at Department of Rehabilitation.

Director Xavier and I are on speed dial mostly because of employment, because it is something that's very passionate to both of our departments, and it's one of those areas that, as noted, that it's not easy. It's very complex. We are facing low unemployment right now. So when you have an environment of low unemployment, even makes it extra complex. So to those questions about are we going to be able to transition straight into employment, that is going to have to be a very thoughtful, careful task and working.

And I appreciate the agenda, noting and lifting up the importance of person-centered approaches. So it's important for each person to be able to have somebody really think through with them: what is those next steps? What is it that they would like to be able to have in their life moving from subminimum wage? That said, I'd like to be able to just give a little context to where we are.

So lifting up the importance of SB 639 is definitely important, but that wasn't the first step in really trying to move away from setting types or service types or situations that really are not lifting up competitive integrated employment or inclusion. And because, as noted in the agenda for a different issue, you have the HCBS federal rule that was released in 2014. And so the work, there was a lot of work activity programs at the time.

The number of work activity programs--which many of them had subminimum wage or the 14c certificates--that really has decreased significantly since 2014. So the work really started very early on. I'm going to go ahead and provide you some examples of the other services that have been developed over time that really is going to be some of those options for individuals as they're exploring what's that next step. Competitive integrated employment: we have that as an opportunity.

The incentive payments that are centered around competitive integrated employment started several years ago. We also noted that during the pandemic, many people had lost their jobs. And so how do we get them back in? So not only those from the moving from subminimum wage, but then going in recovery through the pandemic. So we increase those incentives. For example, if there's a service provider that is providing competitive integrated employment, that their services, they're going to be supporting the individual.

If they're successful at different periods of time, they're going to be able to receive incentive payments. With the implementation of our Quality Incentive Program, we actually doubled those incentive payments.

Not only did we double those incentive payments to be able to help support and encourage matching and placements into competitive integrated employment, we added an incentive to be able to have the support staff that provide the job coaching, to be able to have increased training and certification so we can really build up kind of that expertise as well. And then lastly, doing the satisfaction survey. But in addition to competitive integrated employment, we know that not everybody's always ready right then.

So for a feeder into that to help individuals, we have what's called a Paid Internship Program. So this is where an employer can hire somebody, and then we will go ahead and pay those wages. So you have that opportunity for somebody to really get the benefit of having somebody--Director Xavier often speaks to--and we will lift up frequently about the value and the importance and really actually the benefit of hiring somebody with a disability.

And having employers see that that experience is really not about doing a favor for somebody, it's actually doing a favor for their business because it's a right decision, it's a good decision, and to be able to bring that rich experience to their workforce would really benefit everybody. Additionally, we have the Employment Grant. So we've been working with a stakeholder group as well and identifying how to distribute ten million dollars to advance that work and then Tailored Day Services.

It's a service where service providers can work with individuals, designing a day that means and is important to them. It's very person-centered. And then I saved kind of the last example is the Person-Centered Career Pathway. We designed this very specifically for individuals that are in 14c certificate programs or work activity programs to be able to have a very person-centered approach.

Somebody can work with them, talk to them, expose them, because if you don't know what your choices are, you really don't have a choice. So giving them the opportunity to learn about what are the services that are available through Department of Rehab, through the Regional Centers, and how do we help get those matches.

So having somebody really spend the time to provide that meaningful work with the individual so they can really understand it and then work with them to what is that career pathway. That is also open for those who are just graduating high school. So I was also asked to talk about how are we going to support persons through their transition plan. So it always starts with the Individual Program Plan at the Regional Center, really working with those individuals.

But we've also been funding a number of service providers through our HCBS funding where they're doing individualized person-centered plans. And then we also, as I noted, through the new service type that we have with the person-centered career pathway, the heart of that program is person-centered planning in looking at the career pathway. And I have with me today, my Chief Deputy Director, Brian Winfield, should you have any questions that we need to answer for you today.

Thank you so much, Director. Just two questions for me right now. You talked about the Paid Internship Program, 1,040 hours for paid internship. And in 2021 and 2022, a little over 1,500 individuals participated. And the goal is for them to participate in there temporarily and then hopefully sustain that job. Do you have any information to share how successful this was in the individual state?

I'm going to pass it over to my colleague.

Yes, thank you. Brian Winfield, Chief Deputy for DDS. So we do survey Regional Centers annually on the Paid Internship Program to see how those paid internships have turned into competitive integrated employment or what has occurred after that experience. And there has been some degree of success, but not as much success as we would like with regards to staying in that exact job. But it also is a launching pad for individuals to move into other settings for competitive integrated employment.

And I also want to note that in 2021, we did add some incentive payments for service providers to develop paid internships where they can receive $750 after 30 days of the individual being in the internship, and then they've received $1,000 after 60 days. And the purpose of that incentive funding was to assist service providers in developing those paid internships to allow individuals more job opportunities.

Thank you. Any early thoughts on how to adjust it? It sounds like it's working for some.

Yeah. And that's, for example, Director Bargmann talked about the career pathways, and we're working on that new service type that we will use--offer to individuals who are transitioning out of 14c settings, as well as education, and Paid Internships is one of those options that they certainly have available to them to gain additional job experience in the community.

Thank you. And just a quick request. I see the first quarterly report of the Employment Grant is coming at the end of this month. If my office could get a copy of it, please? Colleagues, any questions? Senator Eggman.

What is the percentage of the population who are currently working? Of the DD population who are currently employed?

Yeah, and I'll, in a second, hand it over to Brian here. I will say that one of the things that's pretty challenging is actually collecting the data as to who has competitive wages. We are working with EDD, and there's some noise, if you will, in that data sometimes, not knowing exactly how many hours somebody's working, and so really getting a good picture of that. So that is an area that we're focusing on, is the priority to be able to see how do we collect the wages.

So much of it is having to be reported to us as opposed to having an automatic way to be able to have it reportable wages, reportable kind of hours so we can really see kind of that impact, as well as then the growth. And so I will say it's too low. So that's why we're going to be doing a lot of this hard work, to be able to increase those opportunities for individuals, to be able to have opportunities for employment.

So we have no idea?

We have--I'd even hate to say anything because I'm not sure how reliable it is. It's very low. I will share with you that there's concerns when you compare California intellectual and developmental disabilities to other states, that we're far behind other states. I would just caution us on that, because in California, we are an entitlement, and as an entitlement, when we're doing our average of employment, we're doing the average of employment of all of our population, where other states, when they're measuring it, they're doing it for those that are on their waiver.

And many of the other states will have within their HCBS waiver, their federal waiver, they'll have caps that they can't have more than so many individuals, and they have a waiting list. You'll see some states with higher percentages, and it's not apples to apples.

But what I would like to do is be able to get back to the Committee the numbers that we are tracking that we do have available and can certainly identify the areas of just caution in reviewing the data.

All right. Because we're talking about phasing something out, and the 14c program, as I understand it, there's better data tracking.

There is a mechanism for it. It's a smaller number of individuals. So you have a small number of individuals, and so that's been an area when we've been able to track it, but to be able to gather wages in a different system has not been fully resolved yet.

Just, Madam Chair, it feels like this needs a lot more work before we completely phase out what we already have because if we're not doing very well at getting people to work now and then we're going to say no more subminimum wage for anybody, how will that help more people with disabilities get jobs?

Yeah, and thank you, Senator, for the concern. I'm also going to ask my colleagues. They may have more of a detail regarding the data. We have invested a significant amount of time to be able to transition folks to opportunities for living wages, and the transition is really important. So being able to have that focus and support those transitions is really the pathway to be able to get there. Continuing subminimum wage is not going to be able to open those doors, and so I would really want to be able to take a look at the pathway that we can take.

I see LAO might have a comment.

Thank you, Chair. Ryan Anderson with the Legislative Analyst Office. Just wanted to jump in with a few observations based on the discussion that's happened so far. First, Senator Eggman, in partial response to your question--and I do fully acknowledge what Director Bargmann is saying about the difficulty with interpreting these data--I'll say just for a sense of magnitude, the numbers that we've seen vary between around 13 and 20 percent of the population are employed.

The second point that I wanted to address a little more forthrightly are the alternatives to employment for individuals with intellectual and developmental disabilities. Oftentimes, I think the modal alternative, the most common alternative to being employed is participation in a day program. These are programs that have a lot of enrichment opportunities, get out in the community, learn things, play a game of bowling.

Things along those lines. Obviously do not have all of the advantages that have been talked about with regards to a job, including a paycheck, but also all the secondary advantages. Some global observations about the transition out of subminimum wage.

First, an obvious observation about this population, both the population within 14c work opportunities and the population with intellectual and developmental disabilities generally, is there is an incredible amount of diversity--diversity of personal characteristics, of course, but also diversity in the specific barriers to work opportunities that each of them have. Now, these barriers may differ for those who are specifically in 14c opportunities.

So if we're talking about specifically, how do we ensure that those specific individuals who will be impacted by the state's decision to discontinue the use of subminimum wage, it'd be important to know specifically what are the barriers faced by that population. And here I think it's important to highlight the data limitations continue to be pretty drastic. As noted in the agenda, it's difficult even getting a handle on how many individuals are served in these situations right now.

Subsequent to that, it would be helpful to know specifically: where are they? What are the job market situations in those areas? What are their specific barriers to competitive integrated employment? What are their productivity as measured by the current 14c standards? These data may be available, but they're not immediately available to those of us at the state level, in part because so many different departments, not just those at the table here, but also the Federal Department of Labor are involved in data collection.

And there's still some work to be done on compiling that. Without a full understanding of specifically what the needs and characteristics of that population are, it is challenging to say with any certainty whether we are well-positioned to ensure that those specific individuals will go into a competitive employment opportunity when subminimum wage is phased out.

Thank you so much. Senator Roth.

Well, I guess I'm a little concerned. I mean, if this is an important program, and it truly is, and this is a vulnerable population, and they certainly are to some extent, and we're interested in making sure that individuals retain employment or gain employment as we discontinue the Subminimum Wage Program, then we probably ought to figure out how to get some data. I may have missed it.

Am I understood--some difficulty in figuring out wage information, but I would assume that the Franchise Tax Board, if there are wages, wouldn't the Franchise Tax Board have that information?

Is my mic on? If I could speak a little bit to this piece of the information. I think what's important to understand about when we're talking about this data, what we're talking about is payroll data. Right? And so the employers report earnings, and they report the benefits to EDD for their taxes and to IRS for the employment taxes for the individual and for the business itself, right? But what is collected that is not reported is: how many hours did I work? What work was I doing? How many days did I work?

Those are all the kinds of things that the employer has, but that is not information that is necessarily passed on beyond the tax reporting unless somebody comes in and does an audit. So as an employer, which I was, I have to have all that documentation so that when somebody comes in and says, 'show me,' it's available. But it's at the employer level. I think that's something for us to kind of think about when we look at that.

Well, I understand that. In fact, we did a bill in the workforce development area because that data is not collected to make sure that those individuals in training programs, not this type of employment, but training programs, when they come out the end of the pipeline, secure jobs for which they have been trained, and someone pays them to be trained.

And there's a data effort now at the EDD to determine how to modify the systems to have employers report that data up through the process so we can determine someone who comes out of a pipeline, training pipeline, where they work, what they get paid, and the occupation, which, of course, can be reportable. So we can track time from training to job to make sure that, in fact, the workforce training programs are effective.

And in this area, I'm just wondering if we shouldn't--as we move through this process--figure out how to piggyback on that effort, which is ongoing, to see if we can determine where people are employed, what they're making, whatever the success or failure criteria that you all, who know much more than I do, certainly, determine would be important to figure out whether we're winning or losing here. I just wanted to ask those questions and make that comment.

And I think my colleagues here are eager to help if there are things that we can do in terms of statutory modifications to enable you all to do the important jobs that you're doing. Thank you. Thank you, Madam Chair.

Absolutely eager to help 100 percent, and I think you mentioned something. I think it was you, Deputy Director, you mentioned regarding working with the population from birth to the age of being able to work, right? The social component around that, the support around that--because maybe this is me assuming, but if you provide support and you get to the age of 16, if you will, and you're going to feel very confident in your abilities to work. So this potentially is--we're kind of working backwards.

It's a population that didn't have the support and is now perhaps fearful to move on because there was no support there. I think it's hard for me to accept that people wouldn't want to get paid above the subminimum wage. So I want to provide that support. I heard, Mr. Carruthers? Yes. Regarding the collaboration, and I want to learn a bit more how that collaboration is going, this was from 2021.

We want to make sure this is implemented and we're moving forward with ensuring people are paid minimum wage here. So I offer my services. You heard here from my colleague as well, but we want to make sure this is a smooth transition. We're taking advantage of everything, we're hearing from our advocates, our peers, ourselves, and during the 101s, even people are worried and move forward. We have a year and a half to build their confidence and be holistic as possible to ensure that they're ready to go. Thank you so much.

Thank you.

DDS isn't going far. We're going to be moving on to the Department of Developmental Services, Issue One: an overview of DDS.

Okay, thank you, Madam Chair. Ready? Nancy Bargmann, Director of the Department of Developmental Services. And I'm joined here today with our Chief Deputy Director of Operations, Carla Castaneda, and Jim Knight, the Deputy Director of our administrative services. I'm going to provide you a brief overview of Developmental Services. Although I want to thank and commend staff on such a well-detailed agenda that provides a lot of context and background of the department and the services within California for people with intellectual and developmental disabilities.

Then I'm also going to address the question in question 2 and 3, and then in question five, then I'll hand it over to my colleagues, if that's okay with the Chair. Just want to give some background for Developmental Services in California. Really marking back to the 1850s when California had approached in delivering services, residential services, as an alternative to families who had individuals with a developmental disability and unable to take care of them at home. And they had developed the developmental center system in California.

And moving forward through the years back in the 1960s, there was parents and advocates and legislators that really wanted to seek alternatives to developmental centers in California to support individuals with intellectual and developmental disabilities. And this was really important because back in the time when looking at an alternative way, and it was the beginning of the Lanternman Act, it was the beginning of the entitlement of services that we get to have for Californians today.

So in 1966, there was signed into law establishing two pilot regional centers. The first one was the Children's Hospital of Los Angeles, which is now the Frank D. Lanterman Regional Center and Golden Gate Regional Center in San Francisco. And then late 60s, early 70s, there's further in the Lanterman Act is that when it was established to be able to have 21 nonprofit, private nonprofit organizations in California.

And so back in the time story is written, it seems to be that it was established as a 21 Regional Centers at approximately a population of 1 million per regional center. Fast forwarding today when we take a look at, we have approximately 400,000 individuals in California receiving Regional Center services.

The smallest regional center is Redwood Coast Regional Center, which is in the farthest point of California at approximately 4000 consumers, and the largest regional center in San Bernardino and Riverside County is Inland Regional Center, that is over 40,000 individuals.

We continue to grow and I'll talk in a little bit about the population, but because of the changes over the years as the Lanterman Act has advanced in the creation, but there's always been the vision of making sure that we're looking and leaning into how do we have a community-based system that supports the vision and the services for individuals with intellectual and disabilities. We have had many changes over the years.

When we take a look at the Lanterman act and the work that we've been doing back in about the early 2000s, when we had the Great Recession, there are significant impacts to the services for individuals. We had reductions in the eligibility for early start. There's some other cuts that had impacts and certainly have restored many of those cuts over the years, such as social rec and CAMP, as well as the eligibility criteria and getting back into focusing on early start.

I also like to just highlight some other very historic times in our history that influenced and certainly influenced some of the policies that we have today. And that was the closure of all the developmental centers in California. So back in 2015, there was the announcement of closing, it was a pretty historical announcement of closing the last three developmental centers in California, Sonoma, Porterville General Treatment Area, and then also Fairview.

The last individual moved out of the developmental center in January of 2021. So that was the end of providing services within California's Developmental Services, state-operated, other than the secure treatment program over at Porterville. So that gets me to kind of how the structure of California is to support, so very high level at the 50,000-foot level. We have the 21 regional centers that support the majority of the services, and then state-operated, we have state-operated services at Porterville secure treatment program.

And then we also have our Canyon Springs, which is a community intermediate care facility out in Southern California. And then we operate what is called STAR, which are stabilization small residential homes to help individuals who are in acute crisis. And those are homes throughout California, southern, central and northern. We also have an acute crisis response team that we operate. Other than that, all services are within the regional centers. They're vendors that are vendored with the regional centers to provide those services.

Regional Centers in themselves and DDS have distinct roles. Regional Centers are there for eligibility assessment, creating the service delivery, as far as the service providers, providing that oversight to the work that they're doing, and providing the key and most important service coordination. And then the department then is working with the role of the oversight and accountability, establishing policies.

So I'd like to just also highlight that over the years, after the great Recession and the closure of the developmental centers, with the closure of the developmental centers, and then moving to developing additional community-based services, we really shifted our focus. How are we meeting the changes in our demographics? So, as I noted that we have about 400,000 individuals. We're projecting just over 420,000 in this next budget year, we are growing about 15 to 20,000 individuals per year.

But also the demographics as far as the individuals that we're serving. So individuals, as far as the diagnosis, we are seeing approximately, we have 160,000 individuals who have autism. The majority of them, about 120,000 of them, are under the age of 22. So as we're really looking at our development of our resources, we're having to take a look at this really emerging and changing demographic of the individuals that we're serving.

That is also true to the other population that is on the other kind of the older side. We're having an aging population that is also, while it's smaller, it is definitely a percentage that we are seeing an increase, just as we are in California. Also, the demographics we've noted over the years that certainly our Latino population has increased. And the majority of our individuals that we serve across all ages, majority of those that are Latino are under the age of 22.

We're also seeing a significant shift of those that are growing in the aging. Where we have a shift in our individuals with autism. We're going to be seeing over the next 10 years that a very large number of those that are graduating are going to be individuals with autism. We've also seen an increase of those in foster care. But this does align with the population. But I will just note that 10 years ago, we provided services to 4700 children. Today, it's 8600.

I was also asked to talk about provisional eligibility and kind of see, and just to give you some context to what was provisional eligibility, it was a new provision to the Lanterman act because we were seeing, and certainly it was magnified during the pandemic in early start, where folks were not children, were not coming in the front door for the birth through three.

And then during the time that we had conversations, and I'll talk more about it when we talk about disparities, is that we were not seeing individuals who are coming in at the same rate or if they are leaving early start, not coming back to the Regional Center, or they were coming back to the Regional Center when they're seven or eight years old.

So provisional eligibility was really there to kind of be that safety net to make sure, are those children really exiting at the time that is appropriate, or are we going to be able to have this safety net, this provisional eligibility for 3 and 4-year-olds? So I'm happy to say that we actually are growing this population, that we are capturing more children. So we had, in February of 2023, our caseload is 5215.

This is an increase from our August number of 145 individuals, so we are definitely seeing that increase. Early start. I'll just flag for you that we are also seeing this as an increase. 10 years ago we were serving as kind of a point in time about 30,000 children. And early start, as a reminder is birth through age three. And then today we're seeing 56,000 children that we are serving in early start.

And happy to provide any additional detail should the Committee want, but I can go to the other questions with my colleagues.

Good morning. Carla Castaneda with the Department of Developmental Services for an overview of the department's budget. The proposed budget has 14.2 billion total funds supporting our budget. That is an increase of 1.6 billion over the revised current-year projection of 12.6 billion. Our budget is broken up, the Director kind of highlighted a few components, into four categories. Our Regional Center purchase of services is 12.2 billion in the budget year. Regional Center operations mentioning the service coordination and that activity is 1.4 billion.

Slight decrease from the year before from the current year and that largely reflects a number of significant one-time investments in the current year. In our state-operated facilities, 340.8 million and then in DDS headquarters approximately 155.7 million. Again a minor decrease reflecting some one time augmentations in the current year. The proposed budget supports caseload and utilization projections, but it also includes a few major adjustments.

One of the larger ones on the operations side is an updated methodology and caseload projection for the children birth through five, so that brings the ratios to one to 40. There are also resources supporting the minimum wage augmentations and then later in the agenda we'll talk about some of the safety net augmentations. I'll also address the questions regarding the rate implementation.

So sorry, before you move on to the next, can you talk about the delay of the preschool inclusion grants and then impact from that?

Sure. The budget included a number of items to address the projected reduced revenues. The delay in the early STAR grants is delayed until 2024. So that had not been one of our initiatives that hasn't been implemented to date. So it's only a delay, it's not ending the program.

To clarify. And it hasn't even started yet.

Correct.

Okay. Thank you.

For the rate implementation. The second phase of the rate model implementation is effective January. The initial phases of the rate model implementation had a quality incentive component that was on top of those augmentations. But effective in July 2024, the fully implemented models will be a two payment component, 90% base rate, and a 10% quality incentive. Stakeholders has of course raised concerns about not knowing what some of those measures will be. While the quality incentive program is outside of the rate model adjustments today, stakeholders have identified priorities for some of those incentives, but they don't apply to all providers.

So the Department is looking at other opportunities that can have incentives for all providers and of course looking to have that so that it would be known before the end of the fiscal year. The other item I was going to address, I'm sorry, question, for the update on parental fee programs. The current budget. There are three programs.

Current law right now suspends two of the fee programs until June of 2023. And in the recent budgets trailer bill that had directed the department to, with input from stakeholders, look at some of those efficiencies and improvements in the fee program. So the agenda includes some of the breakdown of what those fees are and impacted populations. The department is planning six stakeholder meetings. Three of those have occurred.

The other three will be completed by the end of the month and with anticipated proposal with the May revision with that, I'll turn it over to my colleague for remainder.

Hi, thank you. Jim Knight, Deputy Director with the Department of Developmental Services. I want to address a question on the home and community based services final rule or settings rule.

As the agenda notes, those rules were put in place in furthering the Americans with Disabilities Act as well as the Olmstead decision that enforce that living in the community is a civil right, but the services then that are provided, and that's where the final rules come in, it really gets into the requirements for what those services need to do and how they are delivered and developed and provided in a person-centered way.

So, meaning that everybody doesn't fit into a particular way that services are provided, you really need to be focused on the individual's needs and desires. So I think that's really important to kind of set that stage as we talk about your questions about where we are with, quote, compliance with providers.

So those rules, after a lengthy transition period went into effect last Friday, which means now that they are in effect, much like other rules from the Federal Government, is that we are now in that ongoing monitoring stage in determining where we are making changes, addressing any areas of, quote, noncompliance as we see them. But just as an update, there's been a lot of focus on kind of the data and where providers are over the last several years.

As of today, we still have seven providers that we're still working with to provide information, policies and also some evidence that they are meeting the rules now I do want to take a step back when I said that the rules went into effect on Friday. There's an exception, as pointed out, in the agenda that became available to states really in the summer-fall of last year from the Federal Government that allowed for or recognized that some of these requirements and the rules in particular, community engagement and those things were going to be a challenge due to workforce issues.

And because of the effects of the pandemic, workforce has been an issue not only in this system, but obviously in a lot of areas as well. So even though that providers may have policies or may want to or have plans to fully implement these rules, they just may not be able to because of some of the workforce issues.

So we did submit what was as a state, not just our department, but in conjunction with other departments, what's called a corrective action plan to the Federal Government. And that's allowing us, and we've requested until July of 2024 to fully implement and for providers to fully implement portions of these rules that really are impacted by workforce. So that does not include, I think it's important to say it doesn't include some of those basic rights of privacy, dignity, respect. That has to be done now, some of the other things that really are more dependent on the workforce we do have.

You took the question right out of me. It was perfect. Thank you.

Okay. I anticipated. One of the reasons we chose July or really targeted July is because a number of the investments over the last few years, including the rate model implementation, that are really driven, others that are driven towards workforce direct service, professional training, and others to try and build up the workforce, really want to give some of those investments time to work out so that we really can implement and affect the workforce so we can have some meaningful implementation of these rules.

And so I know the question is kind of where are we now and how many providers need to kind of still get there. We will know that as we do our ongoing monitoring. So that is a requirement. It's not a point in time that just because last Friday happened, we're done. As I said, this goes into the ongoing monitoring phase and that every year we'll be working and looking at providers between the Department and the Regional Center addressing issues as they come up. We'll go there.

As we go on, we'll know more about where we are and what issues have arisen.

Thank you. Thank you. I'm glad that the basic human rights are not being delayed into implementation. But can you speak a little bit more how you're even confirming that that is happening?

Yes, so that will be part of the ongoing monitoring. We've done some of that up till now as well. And so it's not just the agenda points out that certainly we have to look at what policies and the expectations that providers have. But these rules are about people's experiences and what they're doing.

So that monitoring is going to include actually going out and visiting with providers, not just providers, but talking with the individuals who receive services and observing what's going on to really see not just do you have something on paper, but in practice, are these things happening?

When can we anticipate those visits to start?

Again, they've started now and they're going to go through on a cycle. I mean, obviously we're talking about close to 7000 providers. So it's an ongoing process.

Great. Thank you, Senator Eggman.

Do you feel like the rates that we did last couple of years as well as the incentives, is it helpful in kind of starting to stabilize workforce and stabilize housing for people?

Thank you, Senator. Nancy Bargman. The rate model implementation so there's been, the Legislature action of implementing the rate model was accelerated to have full implementation July 1, 2024. And so through the budget act of approving the rate adjustments, there is incremental rate adjustments. So we're currently evaluating kind of where the stabilization and looking at staff stability with the quality incentive program, one of the priorities that the work groups identified was how do we measure kind of staff stability.

So last year we for the first time had used a staff stability survey that is used nationally through other states. And we have some lessons learned through that. But the intent of doing that was to be able to get a baseline so we can do a measure going year over year and see kind of the average time of staff turnover, looking at wages. And we're going to be implementing our second round. The first round really was trying to get providers interested in submitting.

I apologize, I don't have with you right now the percentage of those who participated. But working with providers and having the associations help kind of do that outreach to increase that participation. But we're also evaluating this year on the staff stability because the current staff stability is only for certain service types. So we're going to be adding additional service types so we can kind of continue to monitor that and then look forward to the full implementation. July 1, 2024.

Okay. And on the home and community-based services. And the final rule is, is there a standardized modeling that you're using when you're saying you're monitoring? Is there something standardized tool that you're using. And is that with service providers? Is it with transportation, is it with housing? Is it across the board?

Yeah. So the tool, and this is from the Federal Government too. We are monitoring to what those requirements are. You talk about standardization, but it also goes back to what I was saying too. If everything looks the same, we probably haven't done it right because people's needs are different. So we really have to, so we have to monitor within those overall requirements. And as far as the services that this applies to, transportation would not be one of those.

It is really those services where people with developmental disabilities are kind of together in a setting is what they've referred to. So we're talking more things like day-type services, residential services and the like.

Okay. But it just seems to be that the standardization of the monitoring should provide for the variance of the population, right. It was designed for this population.

That's true, yes.

Just two other questions regarding the workforce challenges. Is there a direct correlation with that impacting certain criteria within the final role? Is it the integration into the greater community? Is it the choice regarding services? What part is it affecting directly, do we know?

Well, I will tell you that from the federal perspective, those two areas of the final rule, as well as a couple of others were those that the Federal Government did allow kind of an extension of because of the workforce. I can't tell you exactly from which providers, which of those specific areas are the most challenged, but it does give us some time to address all of them collectively.

Great. And I want to go back to the accountability part just because that's the teeth. Right. Doesn't matter if they sent a documentation, are they really implementing. I know you've been talking about it, but can you go in? I know we started visiting. What's the schedule look like? What's the benchmark by this? Is it quarterly we're going to visit? You mentioned about 7000 providers. Did I hear that correctly? What's the schedule there look like?

Yeah. So there's a combination of schedule will be a little bit different. The department, we will not be visiting all 7000 of those. We'll do a representative sample over a couple of year period. But the regional centers have requirements right now already for what is it referred to as quality assurance visits, where those are done annually at most providers or a number of providers that are done with this rule. It's going to be very at least annually.

Okay. And then during their annual audits, I guess going back to my colleague here, is there added issues that they need to review within that to help with this final rule implementation or is it going to be the same kind of audit they've been doing for years now?

No, and that's the part where I appreciate the question from Senator about we do need to continue to develop that kind of standardized. It's going to be additional because these are new rules that we have to monitor beginning. Well, they were effective in last week.

And final question, we do provide we, the state grants to help to modify these programs. How successful has that been? Have providers applied for this? Do we still have funding there?

I believe you're referencing 15 million, correct. So it's the annual 15 million and that was earmarked specifically to help providers move towards compliance with HCBS that started quite a few years ago. We've had quite a bit of success. I had earlier mentioned about the work activity programs that many, we've really had a reduction of work activity programs because that's setting type, because that's much of what the federal rule is about setting types and promoting that choice in privacy and the other areas that are really important.

And work activity programs frequently are really about just individuals that have disabilities as opposed to inclusive opportunities and really remarkable work that many work activity programs have done. I mean, they've really reimagined themselves and working with the individuals. That's just one example. There's so many other examples that we have of those grants where providers were able to do person-centered training with individuals and families and with their staff and really kind of embed a change of culture and thinking.

So there's a number of examples that resulted from that investment over the last several years. We are still evaluating those providers. This first year of monitoring that we're going to be doing is going to help us see where are we validating where folks are in compliance, but also where are we identifying areas where others may be struggling? And is there other things we can do to be able to provide technical assistance?

When we look at the ability to provide supports directly in the setting type and with the individuals and the providers, we find a lot of success doing that, and we've been able to do some of that within the 15 million as well.

Thank you so much, any other questions? I want to thank DDS for this overview. We're going to be moving on to the agenda's first-panel discussion on the department's safety net plan. Director Bargmann is going to be glued to this chair for this whole Committee hearing. But I also want to welcome up on top of the Director John Decker from the Alta California Regional Center joining us on Zoom is going to be Toby Bazan, a self-advocate.

We're going to have Jackie Dillard-Foss from STEP Agency join us, and then Will Liener from the Disability Rights California.

And if I could also have my colleague Angela Munoz join us.

Thank you. We might need one. No, we don't have room. Director, then there's a way, if there's a question, she can come up. Yep, that's fine. To get us started, we're going to turn to Director Bargmann to provide an overview of the department's 2023 safety net plan and respond to the questions in the agenda.

Thank you, Madam Chair. For the safety net plan, I'm going to provide just a little bit of background as to what led to the development of safety net plans. And then I do have our safety net manager here, Angela Munoz, and then our Deputy Director for state operated, that is here to be able to help answer additional questions as we move through the questions on the agenda.

By way of background, I had shared in the opening about Developmental Services and kind of the history of the state developmental centers at the time, and even during 2012, that was a time when we really started initiating the reduction of reliance on institutional services and care. That was the year that we had put a moratorium of placement into any developmental center, and that was the beginning and started doing the additional move of individuals out to the community.

Certainly things had happened prior to it, but that was definitely a more definitive action that was taken. We also, as I had noted, had done the closure of the developmental centers. So in 2016, when we did the release of the closure plans, we also started evaluating what are the things that are needed in the community to be able to support the individuals that were moving from the developmental centers.

There was concern that there wasn't really a broad enough service plan to be able to effectively and carefully support individuals. So every closure, we had a closure plan, and then we identified also the need to have a safety net plan. And so the first safety net plan was released in 2017 to really describe what are the crisis services. Listening to the families, primarily at the developmental centers, their concerns about having their loved ones move to the community, was something that was very, very real to them.

Many of the families had their sons, daughters, or sisters or brothers who had moved to the developmental center because something bad had happened in the community. So it was important to be able to say, how do we build that safety net plan? And one of the areas in which they lifted up first was to say, we need to know that you're going to be there in a crisis. And so the first safety net plan really focused on crisis response.

And some of the examples of things that we had developed under that safety net plan was the first star home, the acute crisis home. It was developed on site at Fairview Developmental Center, which now, as I noted, has evolved into the community. There is also expansion of crisis services. We prioritize community placement plan and services to expand at the regional xenter crisis services.

And I just want to note that, and certainly when we talk to our stakeholders, I frequently will say safety net is not an event. We have to continue to evaluate the needs, recalibrate, take a look at what the changing needs are, evaluate if the actions that we're taking are effective, or how do we kind of build upon that. And that really did lead to then the 2020 safety net plan.

So when we're taking a look at the progress that was being made, we had identified that there was still a need of developing different models of service because the existing models of service were not meeting the needs of the complex needs that we were starting to see. We've really started identifying that. We have certainly with a caseload growth with a number of individuals, but the complexities certainly are there with individuals with a dual diagnosis.

So you have individuals who have complex needs, not only certainly with an intellectual and developmental disability, but now a co occurring mental health diagnosis. So we established our enhanced behavioral supports homes, our community crisis homes. This is on top of the adult residential facilities for persons with special health care needs, which we fondly call ARF cushions. Many times that was developed for the closure for individuals with very complex medical needs.

So kind of now advancing to the next phase of looking at the 2023 safety net plan. When we were looking at 2020, we started looking at kind of, what is the continuum? What is it that we're needing to do to look at services. So the 2023 really started focusing a lot on what's the status, how many homes, how many services do we have, really looking at also those individualized supports, but then looking at going earlier, we really want to get to a preventative state.

We want to make sure that if we can prevent and really take a look at those individualized supports early on and also really support individuals who may be facing other crisis if there's abuse and having to respond to that and really listening to kind of that other side of it, recognizing also our autism population was growing and knowing that there's a lot of complexity within the autism spectrum, and so having the autism branch. And so those are the things that we were focusing on.

So I am going to go ahead and pause just for a moment because Angela Munoz is our safety net manager and she's the one who has really kind of created kind of the guidance and facilitated the work with our stakeholders in listening to see what are the priorities that we're going to be focusing on. So she'll give you a brief overview of that.

Thank you, Nancy. Good afternoon, Angela Munoz, Safety Net Manager, Department of Developmental Services. I'm going to address questions 2 and 3 in the agenda, and I also just want to expand a little bit on the continuum of crisis services and our safety net continuum, which we have built upon from 2020 into the 2023 updated plan which includes from preventative support services and things such as our Start services, which is a prevention and crisis intervention model which is now expanded to 15 teams across the 21 regional centers.

We have things like our state operated and regional center vendored mobile crisis services, our step down homes, our community crisis homes, as Nancy mentioned, enhanced behavioral support homes, and also the acute crisis State Star operated homes, Star Homes, which are part of our safety net and as well as our stabilization and wraparound services such as intensive transition services, which support individuals transitioning from more restrictive settings into the least restrictive settings.

As part of the 2023 plan response to the needs of the population served, we had 2754 adults and adolescents in 2021 with complex needs as beginning to address this issue of individuals in crisis across the state that are requiring more intensive services.

We do have a couple of proposals in the 2023 plan which include the complex needs residential program, the conversion of two star homes to an ICS intermediate care facility licensure and as well as the extension of the 10 beds at Canyon Springs and then Porterville. So I want to talk just a little bit.

There is full detail in the agenda in regards to the details for the complex needs residential program, but this program proposes 3 5-bed intermediate care facility homes that will have a maximum stay of up to 18 months with a focus for adults and adolescents with co-occurring IDD and mental health needs. It would be an enhanced Star model that is going to be with an increased focus on providing strong mental health and psychiatric support services to the individuals.

This proposal would be an alternative for the Desert Star Canyon Springs 10 beds and would be amending the extension of the Desert Star 10 beds during the development of this model. In addition to that, and to continue to serve these individuals with the most complex needs, we are proposing the two star homes that would be conversion to the intermediate care facility licensure.

This model, the ICF model allows for more robust clinical staffing, such as a physician, dietitian, pharmacist, to be able to support those individuals with the most complex behavioral and medical needs, and while being able to be served in a lesser restrictive setting other than settings such as institutions for mental diseases, where many of the individuals that are served in these homes are coming from.

In addition to that, as I've mentioned before, the proposed extension of the 10 beds at the Canyon Springs would allow for the crisis services to be continued to be provided to individuals in crisis during the development of the complex needs residential program, and then also wanting to touch.

Just as Nancy had mentioned that the safety net is not a one-time event, it is a current evaluation with our stakeholders and our community in regarding to recent and work that we're doing with our current initiatives and evaluating what those needs for individuals are. Questions.

We'll save questions until the end of the panel.

Thank you. So if I could just add, though, there was one final question in the agenda that I'll go ahead and just touch on, and then if there's questions later that we need to have our Deputy Director join us, we can certainly do that. It was requested to provide a demographics and provide some information regarding Canyon Springs and Porterville. And so, just to flag that real quickly for you, that for Porterville secured treatment, we have a census of 189 individuals as of January 2023.

And then the demographics, and I think it's noted also in the agenda, some of the demographics. And so we'll just highlight. So 91% of the individuals residing at the secure treatment program are male and 9% are female. As far as the race and ethnicity, there's 41% are white, 34% are African American or black. And then our Latinx community represents 29%. And then 15% is mixed or listing as in another category. And the average length of stay is varying.

And for those that are under a court commitment of 1370.1, so it's just under a year is the average. And then those that are under a different court commitment is approximately five years. And then in Canyon Springs, which is our community facility out in Southern California, the demographics is 77% are male, 23% are female.

And I'll just note that those individuals, primarily at Canyon Springs, are individuals who've transitioned from Porterville and receiving kind of a step down into Canyon Springs before they are transitioned into a community home. And again, the representation, whites 44%, Hispanic 18%, African Americans 14%. And then we have an unknown, which represents close to 26%. That's something that we've not tracked and then those who are not in our acute crisis, the average length of stay is approximately three years.

Thank you so much. We're going to move on to our next panelist, John Decker.

Good afternoon. My name is John Decker. I'm the Director of Community services at Alta California Regional Center, located here in Northern California. We are one of those nonprofits that they talked about a little bit earlier. We serve approximately 29,000 individuals with developmental disabilities in, as I said, 10 Northern California counties. And I primarily oversee the resource development and quality assurance for our several hundred service providers that work with Alta California Regional Center clients.

And I'm going to talk with you a little bit about our regional center's experiences with the safety net services and a little bit about the variety of different safety net services as well, and how people access them. So, as Director Bargmann mentioned earlier, the services for people with developmental disabilities are initiated through an individual program plan process. So at least annually our staff are meeting with clients or could be more frequently if needed.

If there's emerging issues where we will meet and discuss services and supports that may be necessary to help the individual meet their goals, to meet their needs. In situations where individuals present with complex service needs, we have a number of different ways that we handle it within our Regional Center to connect people to safety net services. So first, people have a manager that they can go to to help figure out what type of services may be available to social worker.

And then we also have some internal review committees that are multidisciplinary, that can support our staff in determining what are the appropriate safety net services to offer. So, for example, we have multidisciplinary teams that include behaviorists, our medical doctors, nurses, et cetera, that have a familiarity with the different type of safety net services that have been developed within our area to help our service coordinators get those referrals over and into those services.

I'm also going to talk with you a little bit about why it's important to have a spectrum of different types of safety net services, from very restrictive settings to things that are very much more preventative in nature. And I appreciate kind of what I think Jim Knight said it earlier. If everything looks the same, you're not doing it right. And I think that's a good point.

When we talk about individualizing services for people with developmental disabilities, key to all of this, whether it is person centered services or trauma informed services, is offering choices. And when we're talking about our safety net services, and we've developed again from the Start models all the way to the community crisis homes. And we're also doing a delayed egress, secure perimeter facility as well.

So lots of different variances in the types of services through the safety net that we offer, because individuals that access these have a range of different types of support needs. We really need to look at a very close assessment of what their support needs are and what the best possible settings or interventions would be available to them. For example, some individuals may have a strong desire to continue to remain in their own home.

They may desire they could be living independently, or they could be living with family members for example. Other individuals may be homeless or at risk of homelessness or housing insecurity because of incidences that occurred that led them to the situation that they're in currently. In those situations, we would be looking for different types of services.

We may be looking at if an individual wants to remain in their own home, bringing in something, as we talked about earlier, like the Start services, if an individual is interested in that placement, we have different types of options from the enhanced behavioral support homes, we have community crisis homes. And then we heard earlier about some of the state run options like the Star programs that we can refer people to as well.

Part of this is also ensuring that as we are doing these referrals, that we're really exhausting the least restrictive settings that we have possible as well. So we don't want to put someone immediately into a very restrictive setting unless we've determined that we've ruled out either for one reason or another, that they cannot go to a lower level setting. Part of this, and I will be talking about it a little bit more, is the utilization of supported living services.

So in essence, where an individual lives in their home and we bring in support providers, and I think Jackie Farson is going to talk a little bit about that a little bit later in this panel, next. So how we support our providers. So our providers step up to do a number of these safety net services.

What we will do for them is we conduct an annual request for proposal to determine what would be the best services that we can get forth for the complex needs of our individuals. With that, we do things like, again, developing like a delayed egress facility or a secure perimeter facility. So our service providers are challenged to meet these additional needs of our community, and we offer them things like additional consultation and technical support through that process of doing things like expanding their vendorizations.

An example of the way we did this to help, sir, very challenging to support individuals is with the enhanced SLS services that we did with the step agency. And we've subsequently done it with three other agencies and another agency in process right now. And in essence, what it does is it takes that supported living model where you have an individual that is living in their own home, and they have staff that are coming in to provide them the supports that they need.

And we added some enhancements on top of it. I'm not going to get into a lot of specifics because I'm sure Jackie will share more about that. But in essence, what we've allowed is for individuals that previously have been served in developmental centers, placed individuals that have been served in the Star homes, individuals that have been served in institutes for mental disease, now have an opportunity to be able to stay in a home of their own and get very enhanced services.

And the primary enhancements that we look at for services like this are the training of the staff, the consultation of the specialists that are involved. And again, Jackie will get into a little bit more about that part of it, too. And then also for these clients, being able to conduct those regular assessments to determine that they are really only receiving the supports that they actually need, and so that they only have the staffing hours, for example, that they actually need and all the additional supports.

I think on behalf of our Regional Center, we're very much looking forward to the safety net proposals that have been put forth to see how much we can learn about the changes that can be made to the waitlists that exist right now. Individuals right now are on protracted hospital stays for long periods of time without meeting medical necessity. There are individuals that are children that are dealing with Child Protective Services placements that need to be arranged modified.

So, very much again looking forward to these safety net proposals, seeing how we can shorten those wait times and offer more services that can be part of someone's own community, someplace where they don't have to be separated from their family, their friends, and their loved ones to receive their services. And that was, by and large, what we had to do before the safety net was developed. We were moving our clients down to the Los Angeles area, to the Bay Area out of Sacramento, because there was no local resources.

So as we expand more and more of these services, I just hope that we remember to keep them local and keep them individualized and build up as much choice as possible for clients. Thank you.

Thank you so much, Mr. Decker. Moving on to Jackie Foss. Welcome.

Just kidding. I'm so sorry. Jackie.

Hello.

Jackie, you're fine.

No, you confused me when you said, oh, Jackie's next, you're not next. Jackie.

Why not next?

You're not next. We have someone on Zoom first.

Okay, we're going to Zoom in. Goodbye.

Yes. Toby Bazan, self advocate. Welcome.

Thank you so much.

We can see it. Thank you.

Hello, I'm Toby Bazan and I live in my own plains in Canyon Country. This is me when I was younger. I live with my mom and my grandpa and my grandma when I grew up. I had some issues in school when I was little and I had some issues in the community too. When I was 15, I had an issue with the police and I ended up at Fairview State Hospital in a locked residential unit.

I lived at Fairview State Hospital from age 15 until I got out, until I was 27. When Mark, Ken and Joaquin gave me space. . Got to walk around the campus was better than being inside or getting into arguments on the locked residential unit.

Sometimes I get little nervous when I am in enclose spaces or if people are being pushy. If people get my face, I get very nervous. At Fairview, they would tie me down in five points when I had an issue. they didn't understand, I just got more nervous when they did that.

And you want to tell them really quick what five points are.

Your throat, your wrists, your ankles on the coil box springs.

Do you think they should do that to people?

No, that's crap Allah. That was me hugging a tree at the Montana. I advocated for myself to live in the community again. Disability rights of California told me, told Fairview they had to post our rights on the wall. I was able to read what it said and I wrote letters I want saying that I wanted to live in a community again. Avenues got a referral from the Regional Center because the letter I wrote and they helped me get out in 2007.

I slept under my bed at Fairview State Hospital for 13 years. They didn't realize I was acting out because I was nervous. They just thought it was a disability issue. Once I got out of Fairview, Dr. Corinne helped me get off the psychotropic medications and take something for anxiety instead. That was my old bed at one time. Till the water damage gone to it.

Yeah. So you got a new bed now, but where do you sleep now?

On my bed. This is me. That was at the 4 July parade. I moved out of Fairview of October of 2007. When I was 27, I moved into my own apartment. I like to live, living in my own place instead of an institution. No more restraints or seclusion. They should not do that to people for nothing. No more 5 point restraints or seclusions. We need more housing, especially more Section 8 Housing Vouchers to help people with disabilities to avoid.

I worked at Six Flags Magic Mountain as a park attendant for six years. I'm not working there right now. I'm working right here at the Masonic lodge.

Well, you got a couple of jobs. You'll tell them in a minute.

Okay. I have presented over 1700 students at Cal State Northridge, Sacramento State and C.O.C. I make an extra money on my days off. I love to recycle and make money. It's a win win. I received the 2014 Volunteer of the year from LA County Placerita Nature center. There was me, Russ and his old guys.

I like to do work outdoors where I have more freedom at my job at Sloan Canyon. That's on Mondays, sometimes when it rains. Laurie and Scott decided no work for that day.

Yeah.

I also have a job setting up and taking down furniture for a group at the Masonic lodge for two years.

So you're doing that today, right?

Yeah, I did today.

So what are some issues that you want help with?

I use all my SSI money income to pay off the most of the monthly rent. I do recycling and my jobs to pay for my utilities and my cell phone. But the cell phone my sister pay for.

That's good.

We need more housing vouchers. LA City and LA County haven't had Section 8 Housing Vouches available since I moved into the community in 2007. They said I have to be homeless to qualify. This is ridiculous.

All right. And that is it for you if you have any questions.

Any questions?

No, thank you. Toby, I just wanted to know. I didn't want to interrupt that I've been collecting recycling since I was 10 years old, so I did it when I was younger to ensure I could pay for my snacks in the school. And I haven't stopped ever since. No, I really appreciate you taking the time to join us and share your insight. I don't have any questions. Colleagues.

No. Yes. Sorry. Going back now. It's your turn. Jackie. And Toby, if you could stay on, we might have some questions for you. After the panelists are done.

Can I go back to following John Decker? Thank you, Toby. Hi, my name is Jackie Foss. I'm the CEO and founder of Strategies to Empower People. It's an agency that provides services and supports to folks with intellectual and developmental disabilities since 1992.

I'm a provider for Alta California Regional Center and North Bay Regional Center. The safety net discussion is critically important to the long term success of people with complex needs. It's also personal to me, and it's personal to the people I serve.

I have spent much of my career fighting to provide people with developmental disabilities more independence, choice, and control over their lives. I fight against the outdated service models based on segregation and institutionalization, and I fight for a more integrated and inclusive community.

When DDS created the safety net, I had assumed that enhanced supported living or supported living would be included. This program was unfortunately not included. The program that Toby's in today, the safety net, has a gaping hole. And that is why I'm here today.

John began to reference that gaping hole about the safety net. Why is supported living not there? But I won't talk about the problem. I'll talk about the tested, proven, and transformational solutions. I think the best way to talk about anything is to introduce you to somebody. I'd like to introduce you to Maria. This is Maria. This was a picture taken in 2019. Her face is covered to protect her privacy. Maria was labeled as someone with autism. She suffered horrific abuse.

She had disruptive and self harming behaviors like head and back slamming. When I said head and back slamming, it sounds just like that. She would slam her head hard into a surface or her back. When there was no options for Maria, they said that she had too many behavioral issues to qualify for a medical group home. She had too many behavioral issues to qualify for a behavioral group home. So there was no safety net for Maria.

What happened to her is she was placed at UC Davis. While she was at UC Davis, they had no real obvious options to keep her safe, so they placed her in what's called a Posey bed. Maria spent almost a year in this Posey bed. During that time, they caused her even more physical harm. She was bruised when we met her from head to lower spine because of her self injurious behavior. And during that time in the Posey bed, she lost her ability to walk.

There was no safety net for someone like Maria. We talk about the program. But, there was nothing there. She ended up there because there was nothing available. Alta California Regional Center finally reached out to step because they saw the value of individualized services and support.

We had been transitioning people out of institutional settings for quite some time. I started my career really working towards getting Sonoma Developmental Center closed, and step proudly serves over 45 individuals that previously lived at Sonoma Porterville, Camarillo.

You name the developmental center. I can name an individual that I support that used to live there. At STEP, we are fortunate to have a nationally recognized neuropsychiatrist on staff. As our medical Director, Dr. Ruth Myers.

Through her support and her team, we were able to comprehensively assess Maria's medical support needs. She was at UC Davis for a year, we discovered through this comprehensive assessment that she had severe spinal pain.

I'm going to say this correctly because I've been practicing Cornelia Delonge syndrome, a syndrome. And Ruth will tell me if I was right or wrong. Pituitary tumors, pancreatic insufficiency. In addition to her already developmental challenges, once we could address her medical needs, once she moved into her own home, her labels of aggression began to lessen, and we began to meet Maria, a young woman with hopes and dreams. She now has a team that is there to support her even through her most difficult days.

This is Maria today. This was last week at her birthday party. I'm proud to say that Maria is now walking. She is able to make choices. She lives in her own home, and she has the power of her own voice. We have to ask ourselves, if we were being placed in a Posey bed for over a year, would we have behaviors? Would we have labels? If we were misdiagnosed and we're suffering from a long list of painful physical conditions, would we have behaviors?

I think we find that we are all more alike than different. We need to stop seeing people with developmental disabilities as less than, stop viewing their lives as less valuable. That's the ultimate form of discrimination. Maria is just one example. I know dozens of Marias. One of them showed up today. She left because she had a date with her boyfriend for lunch. But this is Danielle when we picked her up in jail. Danielle sat in jail. She was here today. I know.

John saw her and was like, holy smokes, that's Danielle. Because Danielle has a boyfriend, and she lived a very full life. You have that in your packet that I gave you. Sorry, I got less. I get in my own little brain here. I'm handing you a packet with a few examples. I've already done that.

It all starts with STEP's foundational mission, that every moment has potential, but that takes each of us to pay attention to the individual's potential, and not only looking at the individual's problems, our system only looks at the problems.

Using this model, STEP has successfully transitioned individuals out of many institutional settings, such as behavioral group homes, crisis home, community crisis home, acute psychiatric hospitals, developmental centers like Canyon Springs, correctional facilities, emergency rooms, including hospitals with extended stay like UC Davis.

The good news is, we know we can do it. We have a proven, effective, innovative model. It just requires imagination, collaboration, and hard work. At STEP, we do this in part by having a full time medical director like Dr. Ruth Myers. She does her comprehensive assessments, and she specializes in any services for those with intellectual disabilities. We don't start with a behavior. We start with the medical issues.

If you have severe arthritis, let's figure out the severe arthritis and not that you're having a complex behavioral episode. That's what happens to so many of our folks. We label them as behaviors when it's medical issues that are happening. Similar to what Toby talked about, why he laid under his bed, why didn't we notice his anxiety?

We provided extensive training to our direct support professionals, and we have lower caseload ratios for our facilitators so they can more effectively meet the needs of these complex folks.

The other thing that it requires is a willing Regional Center, like Alta, California Regional Center. John Decker and his team reached out to STEP to say, this is something that is a valuable part of the safety net, even though it's not included. What Alta has done to make this easier for STEP is they make a specialized unit available, accessible, and accountable to the needs of those people with complex needs. They streamline the health and safety waiver process.

And I appreciate the Department of Developmental Services has done that as well. They fund our medical director. They have given us the ability to pay our staff a competitive wage. I want to give you one little scenario.

In Santa Rosa where we serve North Bay Regional Center, we serve five folks with very complex needs that are all deaf. We were not able to get fluent signing staff because of the wage. We got the Health and Safety waiver. We were able to pay a competitive wage.

We went from two deaf staff to seven deaf staff. The homes are fully staffed with fluent signers because of a competitive wage. So thank you for those Health and Safety waivers. They Fund rental exceptions so we can find appropriate housing.

They fund supported retrofits so the homes are safe for someone like Maria, who, while slamming it to the wall, there's padding there so she doesn't injure herself. And most importantly, they believe this model of support works. We have to include this in the safety net.

And I don't know why it's not. It's one of those. One is the passion of mine to have it included. Another side note on the safety net, it kind of falls in is in independent living skills. The rate models got it wrong. We hear the rate study implementation, we are going to begin seeing people in independent living to begin falling through because ILS providers like myself will be gone if we don't fix that ILS rate.

So I'm hoping that we can have a bigger conversation with this. I also have to leave you with this. We must become a society of inclusion and not segregation. We must not only see the problems, but the possibilities when we really, really do person centered, individualized supports, it makes all the difference for people in that packet with have the most complex needs. We say that they have to fail out of one model or another in supported living. We just surround them in support.

When they're having high complex days, we just surround them and give them the support they need. And they never have to leave their home. They never have to leave their home. So let's really make a community based system where a person has a home of their own. Thank you so much.

Thank you. Our last finalist is going to be Will Leiner from Disability Rights California.

Good afternoon, my name is William Liner. I am an attorney with Disability Rights California, and I want to thank the Committee for the opportunity to speak today. This topic is both personal and professional to me. I've spent much of my career representing people in institutions who are never given a shot at community living.

I also have a brother served by a Regional Center who earlier in his life was forced into an institution, and he now lives in a home of his own with, guess what? Supported living with the supports that he needs and he deserves.

So I want to first acknowledge and recognize all the work that DDS has done around the safety net and its commitment to it. It's helped countless people in times of crisis. But I have three points I want to make in my testimony recommendation, and then I want to leave you all with a question.

My first point, we were troubled to learn in the agenda that the three ICFs that make up the complex needs program will be located on the grounds of Fairview Developmental Center. That doesn't sound like the program that was described in the budget of a complex needs residential program.

What it starts to sound like is three small institutions located on the grounds of a now closed large institution, the place that Toby used to live. It's starting to sound like a Fairview reopening plan.

That's what's starting to sound like. And without clear Trailer Bill Language associated with this request, it's unclear how some of the protections that DDS proposes will stick. Making sure that each unit only has five beds. Making sure that there's only 15 total.

Making sure that there's a maximum stay of 18 months. So we recognize the need for a safety net. We have a lot of questions about the complex needs residential program.

My second point, DDS is proposing to again extend the expansion of Porterville Developmental Center. And I recognize that Porterville is seen by many people in our system as the answer for Regional Center consumers who got entangled into the criminal legal system and are unable to stand trial for the charges against them. But many Porterville residents would tell you it's just another type of jail.

Where people in TDS status shows us are subjected to restraints. And by restraints, I mean the type that Toby described, tied down and strapped down to a bed and where they spend years, even decades at Porterville without ever having been convicted of a crime.

So given this backdrop, I just want to throw out the question, why do we need to continue this expansion? And to DDS's credit, to their credit, the bed count at Porterville has remained well below 200 for many months. But they want 200 beds.

You want to keep funding an additional 10 beds. This is a lean budget year. That's what we're hearing. Why are these investments necessary? My third point, an emerging feature of the safety net is the reliance on group and institutional models of care at the expense of investments and supported living. Here's one statistic.

Since 2016, DDS has funded 31 community crisis homes and 114 enhanced behavioral support homes. Here's another statistic, since 2005, DDS has invested in 55 supported living programs. I'm doing the math.

That's about three, little over three a year. I'm not suggesting that investments in crisis homes or enhanced behavioral support homes are necessarily bad. What I am saying is things are looking a little lopsided. We need more support in living programs like STEP, like the program that supports Toby, not just because it's the right thing to do, not just because it's the legal thing to do. We also heard that it works. These programs work.

This is a gap in the safety net that desperately needs to be filled. But the system needs to actively support it, too. For example, Regional Centers today, today have the authority, and I might say obligation to fund things like rental assistance and home modifications for people who need safety net services to have safe, affordable, accessible places to live.

But not every Regional Center has a John Decker to support these programs. A consistent theme that we see is that Regional Centers will develop policies and practices.

They'll say, you know what? We could fund home modifications, but only for people who own their home. We're not going to pay that for people who rent. Or they'll just say, we don't fund rent. This seems backwards. It seems backwards. Why is it harder for our system to pay someone's rent than to move them to a facility? Why is it easier to buy and build a whole new facility than just retrofit a person's home?

We're incentivizing the things at the wrong end of the safety net continuum. And lastly, the rapid pace of all this facility development suggests that our system has just decided that many people need institutional or congregate care that only safety net facilities offer.

But without first interrogating a different question, have we organized our safety net in a way to provide these supports in a person's own home? And I'll close by answering that question. I don't think we have. We haven't done it enough.

And until we do, the work of the safety net remains incomplete. So thank you for the opportunity to speak, and we'd be happy to answer questions, too.

Thank you. Does DOF or LAO want to add any additional comments so that robots.

Christopher O'Neill, Department of Finance. Nothing further to add.

Perfect. You know, California right now is working, and we had. I think this is one of the first topics in this Committee we went over, is how we're advancing and innovating Medical CALA. Right. Because we recognize that when you have an individual. I have chronic back pain. It could be easily for the VA to just give me ibuprofen, ibuprofen, ibuprofen, ibuprofen, and I'm going to have chronic back pain for the rest of my life.

But if they're not asking, what kind of bed are you sleeping on? Do you have a bed to sleep on? Are you sleeping? Are you unhoused? We're never going to really get at the root of the problem. So what I'm taking back here is that we're seeing the state move forward in this approach in other areas, recognize we work in a system, and that at times we lean towards the way the institutions have been run.

And what I've been hearing is that it looks like we're moving backwards versus forward. It reminds me also of the DJJ crisis we have and the closures of DJJ, just like the closures of these centers. And the goal is for the juveniles to move into juvenile halls, to get my program and so forth. But in fact, we're seeing it go backwards. And this is the same kind of thing we're seeing here so far.

I do want to echo some remarks, especially Will, you took the same questions I had for today, and I want to start off with those questions. I want to start off first with the complex needs residential program. Can you please confirm if we are looking at Fairview, are we at utilizing that center that's supposed to be in a warm, closed down process? If we're looking to put three complex beds there and just really put it back into what it was intended to be closed.

I fear that same walls, these walls weren't created for a more integral approach, for a more holistic approach. These walls within themselves already create a problem. So if you could. That's my first question there and then connected to that, and I know we're going to go into more in the BCP. The extension of Desert Star has no end date and it's attached to when these homes are going to be done and so forth.

I fear also that patients would stay at this location for an undefined amount of time, again, not moving us forward or putting that pressure on us as a state to say we really need to provide the services that we intended to provide. I'll start with those two.

Okay, thank you, Madam Chair, regarding those two questions. So first, I want to just express the commitment of anything that we're doing within the services, the Developmental Services, is really with the lens of inclusion. And appreciate the concerns that our DRC has highlighted regarding the intermediate care facilities and then the development that's identified at Fairview.

So I want to give some context behind that. So intermediate care facilities, the intent of actually having the license of an intermediate care facility is actually quite the opposite right now.

And as Jackie had noted, that we do have a number of individuals that are in very, very isolated, acute settings that are not transitioning out and really wanting to take a look at what are the opportunities to be able to timely transition individuals out that may be in acute psychiatric settings on psychotropics that are injected. And there have been many referrals to our STAR services that we have had to have the individual stay on a list for STAR.

As the Regional Centers are exploring different options, and as they're exploring different options, one of the challenges is that, and I'm not a clinician, so I'm going to just kind of put that out there. But I'm very aware that if you have somebody that has been on injectable psychotropics, that there has to be a very thoughtful way to be able to titrate them off the medications.

And so in wanting to be able to make sure that we have a resource, that is the reason why we're looking to have an ICF level of care, so we can have the medical staff, because in a community care facility, we cannot have any injectable psychotropics, our policies would not change. The intent is just to have a model that we would be able to have the level of licensing kind of bandwidth, if you will, to be able to do that.

But I absolutely understand the concern of the optics of having it licensed as an ICF. But I just want to put out there that it truly is about doing the complete opposite of what kind of the perception or what it looks like that we would be doing with an ICF. So the question regarding on Fairview, so to give a view of the Fairview property, there's also part of the property that's called Harbor Village.

Harbor Village was developed a couple of decades ago, and it was state property that was part of Fairview. So Fairview Developmental center has the buildings that were part of the developmental center, and the future is still being assessed as to what kind of that property is going to be used for. But we do have the Harbor Village where there's affordable housing, there's single family, and it's used by those with and without disabilities. It's marketable rent. It's also affordable rent.

So you have a real community out there that's pretty significant. So our proposal is really about carving out, and we did this for the STAR homes as well. So we had a section over that was still Fairview property, but what we had done is that we then moved portion. There's a small section that we moved over to the Harbor Village property management. So it's now part of that community, and it's still part of the community over there. And that is the intent of this.

So again, I totally understand how saying it's on Fairview property that it looks like that we're just going to be developing an institution that is not the intent. The intent is not to have units. It's not to have a full unit that's going to have 15 people in it. It is modeling, as it was noted in the description of kind of an enhanced STAR.

So having it as a residential setting that is using the same floor print, that are similar to it, that we have for our STAR homes, which are incredible, and we invite anybody to come out and visit them that are a part of a neighborhood. And so that is really what we're looking to do. And we would absolutely welcome the opportunity to meet with DRC out there, to meet with others out there, to walk the area, to really take a look at what are those opportunities for inclusion.

We don't want to go backwards. We really believed in the fact that we needed to deinstitutionalize. So understanding the optics of it, but also really wanting to express that that is not the intention. That the intention really is developing a model of service that is inclusive out in the community, but also meets the needs of very complex needs that we have today.

Just quick follow up on that is the intent to bring the same employees that worked at Fairview into these complex.

All those staff are working either. We have several of the staff that were at Fairview are working at a handful at STAR. We also have new staff because many of the staff have retired and moved on to other positions. So we're going to have to bring on new staff.

Are there staff that are state employees, whether it's through Developmental Services, which is actually very limited in Southern California, or is it others that are entering or exiting some training programs?

So we're going to have to build the team. We're going to have to train the team. And training includes person centered practices. We just did some training that is focused on person centered training through trauma informed care. Really taking a look at how we can really make sure that our staff are looking at services and supports through a lens that is really in today's kind of visionary of services.

Thank you, colleagues. Okay, I have more questions. I just want to. Okay, Mr. Decker, can you talk about not all Regional Centers are created equally, collaboration with other Regional Centers and any suggestions that you have.

Thank you. I think I would share, first off, that the Regional Centers do collaborate very frequently. We certainly meet with each other regularly. We have the Association of Regional Center agencies and that has discipline groups. So I meet with my peers from the other Regional Centers once a month. And that's when we talk about things like new models of care.

We talk about different types of services that are being developed locally, how we're trying to meet our local community needs, and how we operationalize the changes that have gone on to our system as well. So there are venues that are certainly available. Additionally, there's some board of director trainings that are available for our boards of directors as well at each of our Regional Centers. The Association of Regional Center agencies does that as well.

So again, we can share things like new models of care that are available.

With that it sounds, on paper, that sounds good. Then why do you anticipate, why are we having a different level of services in Regional Centers, then?

I think I can speak to our Regional Center and what we've prioritized and what we think is important. And again, looking at providing those services in our local community, not having people travel, people being able to have the opportunity to live in their own home. When we talk about trauma informed care, the cornerstone of it is choice. And if you have a choice to be able to remain where you live and get those services and support.

So for us, that has been a large priority of our Regional Center. And we've supported that through multiple vendorizations with different service providers and certainly are welcome to share that information and our knowledge of how successful it's been. It was great to see Danny here a little bit earlier. I just want to point that out here that she was in the crowd a little bit earlier and I have not seen her since she was in an institutional setting.

So seeing her four years later out here is fantastic.

Thank you, Director. I just wanted to give you a little break before I came back. Know I appreciate the insight you gave me and the responses. Know, the utilization of Fairview. So what I'm seeing is we're going back to a location that we've used before.

We're looking to expand or extend the Cannon Springs Desert or add more beds to Porterville institutions or locations we currently have. I'm wondering if you could speak to why or are we excluding other types of residential community based options for individuals? It just seems like we're going back to the known and not going outside of that box.

Thank you, Madam Chair. I appreciate that question. As far as we're not going back to what's known. So the extension of the beds over at Porterville are intended to. Right now we have authority through June of 2023 for 20 extra beds. That was temporary. What we're requesting that's proposed is to remove 10 of those, but continue 10 more just for one more year. So that's at Porterville.

The Canyon Springs, while we were looking at kind of the timeline for the extension over at Canyon Springs for the STAR services, because the capacity that we have at Canyon Springs right now for just those that are not within the acute crisis actually has continued to decrease. I don't have the exact number right now, but I believe we're under 40 individuals today for those that are over at Canyon Springs that are not part of the acute crisis.

And the reason why we didn't put kind of a timeline on it, but recognizing that that is time limited, the intent is time limited because of developing the complex development is because I don't know exactly when it's going to be done. The other benefit of using state property is not easy to find. And when we take a look at identifying residential settings that are in so many different places in the state, this is not an easy thing.

We work with Regional Centers, Regional Centers have developed and I don't want to minimize. I think that what Jackie's sharing and the importance and the value of supported living services on an individualized basis, by far, individualized inclusive services has to be number one. But in the instances that that's not available, we do need to make sure that we do have other resources that are available.

And so when we take a look at, and I do have a waiting list that's going into our STAR services, we've developed the community crisis and, and absolutely look forward to more conversations with Jackie about kind of the supporting complex needs and supported living. But finding houses, when we're developing those or the Regional Centers are, it's taking up to three years to find, renovate, because when you're doing the renovation, it's pretty complex.

And then to actually get it licensed, you're looking at least three years for development. In many cases, the benefit of using the state property is that we don't have to go find the property. We have it. So it's using the benefit of the state property to expand services and seeing how we can do that. So it would reduce the timeline. I just don't know exactly how long it would take.

And that's the concern about setting a timeline for those individuals that we support that have very complex needs that are only there for 13 months, but being able to support them until we can open up additional resource is the request and the proposal that we have.

My final question kind of related, and I'd love for both of you to answer this, and this is for my education. I don't know the process. I don't know if you have empty beds that you can fill. I don't know the process. Like, is there a way we can put some individuals in empty beds while we wait?

I'm going to push the button. Supported living is not about an empty bed. It's about a home of one's own. So, for example, when I talked about Maria, it was meeting Maria, finding a home that met her needs, working with the Regional Center to get a rental exception. It's like any of us in our own home community. You're looking for your own home. We are not on the lease of any of these individuals in enhanced supported living. It is their home.

We provide the support in their home so you don't have to look for a bed. So when John Decker says a home of one's own, it really is. We have people in duplexes. We have people. I have a young man who's been in the same home for 20 years.

He has very Tourette syndrome, autism, very complex needs. He lives on a farmhouse in five acres because that serves his needs. So it's not about. I mean, I appreciate there's the land at Fairview.

It's about what best met Toby's needs, what best met Danielle's needs. We have individuals where they're very loud. If they live in an apartment complex, not so good. But it really is just meeting the person, comprehensively assessing them and looking in their own community so you don't have to build it.

And they will come. It's been built. We just need to rent it. I mean, really and truly, that's the answer to the question. And then the retrofitting is really critically important. Alta California Regional Center.

And I was meeting with the Executive Director of North Bay Regional Center who really wants to expand more enhanced supported living in his Regional Center. I appreciate what John says, but I bet you if I talk to Scott at Avenues, the struggle for rental exceptions is different at North LA than it is at Alta. Now, for Alta, I can get those rental exceptions for people with complex needs, but not for that person who's just struggling. They're living dollar by dollar.

I listened to San Diego Regional Center and I learned they do rental subsidies for people that don't have complex needs. So it's not consistent, it's available resource, it's inconsistent across 21 Regional Centers.

So you're not looking for a bed, you're looking for a home, and you're looking to meet the unique needs of the individual. And then the retrofitting, the rental exceptions, all those come into play when we do that with the Regional Center. But you don't have to build it. It's just finding it in our community and developing those relationships.

So when we take a look at the continuum of services, and I am so grateful every day for Jackie and the work that they do, it is remarkable. Working in the Developmental Services, our community of partners is very special because we get things done, and that is really part of what our providers do because they care. And I'm just so grateful to them. We are seeing a significant increase of individuals with highly complex needs, supported living services, or going back to the family home.

Those are the forever homes. That's really what we want to make sure that ultimately is happening. But when we have somebody who is an acute psychiatric setting, or if they're in an institution for mental diseases, having them wait in an environment that don't have staff, that have a knowledge base of intellectual and developmental disabilities is really then having that timeline in an environment that really isn't supportive.

So the services that we're expanding, I just encourage us to look at the continuum and not look at our proposal as a forever home. That is not the intent. It's for stabilization and then finding that next step, finding the supported living option, finding if going back to the family home. Sadly, we're seeing some children. I'm seeing more children, even at the younger ages that are coming to the Regional Centers.

The fact that I'm familiar with individual cases and the number of cases is really a daunting realization that we have a need to develop some unique services. I just got to see Dr. Ruth Myers out there and that she's in California. It's incredible. To have that level of skill set in California is incredible. And being able to build our capacity as a system is really what we also need to do. But we do need a continuum.

We need a lot of different options to be able to help stabilize so we can have individuals go to those forever settings and forever homes, but happy to answer more questions around that or if we need to revisit any of those.

Can I just add one last comment? And I really do appreciate the work of Director Bargmann. She's extraordinary. She's an extraordinary partner because sometimes I will text her with crazy stuff and she actually listens. But what's missing is we're not in the safety net.

What's missing in the continuum? We talk about the continuum. We're not in the safety net. We're not even at the safety net table. We're not in the safety net discussion. We're not about how do you build it?

How do you make it better? So 21 Regional Centers, they don't talk about enhanced supported living. Alta California Regional Center talks about it. North Bay Regional Center talks about it, but they don't talk about it because we're not. And so I'm here today to say we need to be at the table. Maria needs us at the table. Danielle. Danielle was failing. She got kicked out of her. Her group home, called the police on her.

They put her in jail, and she sat there for months because they wanted her out. That was their way to evict her. We've got to be at the table. That's all I want to say.

Thank you, Jackie. We're going to close out here, this panel, and I want to thank everyone for their information. And, Director, I want to work with you. I want to work in seeing how we can make that happen. Maybe not the entire ask right now, but I want to make sure we are utilizing every single tool in our toolbox. Every single one. And I would love to see how we can get that done. So definitely be in touch, and I appreciate that.

I know you're still going to be here at this table. So we're going to move on to issue number three, extension of 10 beds at Porterville Developmental center. Something we've been touching on throughout our discussion. Please proceed.

if you will. I'm going to have my Deputy Director of state operated come for issue 3 and 4.

Good afternoon, Madam Chair and Members. My name is Marni Sager. I'm the Deputy Director of the State-Operated Facilities Division. Appreciate the opportunity to be here speaking with each of you today. In order to touch on Issue Number Three, we've already heard a little bit about it, but wanted to just reinforce we are looking for ten of the 20 beds that we were given temporary authorization for, which are scheduled to sunset at the end of June 2023, and we wanted to continue ten of those beds for just one year.

In terms of why this is needed, we really don't feel like we can rely on data gathered while we were operating under the public health state of emergency to predict the need for these placements after the state of emergency has been lifted. DDS seeks to be prepared to meet the needs of these placements after our societal conditions normalize, and this is really only a one-year ask and we will monitor usage.

There is no intention or goal to fill additional beds or increase capacity in any way at Porterville at this time. Wanting to just also touch on the additional resources we have been working on to help divert consumers away from the criminal legal system and developing community-based community restoration programs as well as the question about how many individuals with IDD have participated in diversion programs or competency restoration programs based in the community, we are still collecting data on this topic, but based on Regional Center reporting to date, there are approximately 200 consumers who have diversion plans for felonies and misdemeanors.

Through our Community Placement Plan and Community Resource Development Plan funding, Regional Centers have been developing community-based competency restoration services and other resources for individuals on diversion plans. We have five EBSHs, Enhanced Behavioral Support Homes, with delayed egress and secure perimeter in development with five different Regional Centers, and each of those programs will provide community-based competency restoration training.

Regional Centers have partnered with vendors that provide community restoration training in--competency restoration training, excuse me--in the community, as well as we have forensic-related Regional Center positions to focus on diverting individuals from the criminal justice system, and those folks also help to navigate and be liaisons with the courts and to help those individuals navigate the criminal justice system.

DDS does hold bimonthly meetings as well the Regional Centers to discuss the planning for all individuals who live at Porterville and Canyon Springs to safely transition them into the community, and that planning involves residential and day program support coordination as well as wraparound services to prevent and divert them from the criminal justice system. There any questions?

Yes, a couple. You spoke that you want to make sure you're prepared, given that we're out of the emergency pandemic, but can you touch a little bit more about where you're getting potentially this--I wouldn't say worrying--but just like the potential for more beds. It seems like you've been able to meet below 200 for quite some time. As of now it's at 189?

Yes, as of January. So there is not a specific data point I can point to, but I will say that we've just seen an ebb and a flow during the past three years of the pandemic where we've had different levels of referrals coming in. We have been under 200 for some time, but we did go over our 211 cap during Covid a couple of times.

And really we're looking to make sure that we continue to be in compliance with the state of any ruling which requires us to begin services within 28 days of receiving the court order. And our goal again, is really just to maintain the resources and make sure we're able to meet getting individuals in in a timely manner, and we really want to avoid anyone being delayed with receiving services.

How I'm reading this is, I feel like this is an accountability for the state, for us, that if we have this cap at 211 that further incentivize us to get people through the program and out of these facilities. As we're coming, if you're at 29, we're like, okay, we really need to start looking at the individuals, our population here, because we could potentially go over, this is an incentive, I feel, like a block that is needed that we can reevaluate, look at our population, and get out. That's how I'm reading it right now. So some concerns to add some beds, but I want to turn to my colleagues for any additional--Senator Eggman?

I would just say I share the same concern. I'm sorry I missed part of the last panel, but if we're under that, the number, then I don't understand why we would have more. And as we heard, and we all know that that long-term institutionalization doesn't bode for people moving out and back into the community. And I guess to Director Bargmann, so why not have the S.T.E.P. programs in the safety net plan and continue to move towards that direction versus increasing beds at an institution?

Yeah. Thank you, Senator. As far as having the safety net includes supported living services, I think it's going to be important for us when we look at our continuum of services to not only look at supported living services, but looking at the other services that are still in the community. But while they haven't been called out of the safety net, they're part of our safety net. They're part of the services that individuals access.

And we have the same for those that are living at home, and happy to have further conversations about that. At Porterville, we're actually not wanting--I mean--you're probably familiar with Porterville, and so we don't place there. The courts order there. And so we're dependent on kind of how many individuals have had a charge of a felony. And I am pleased to see the diversion program as it was noted, as the Deputy Director had noted, that there's five Regional Centers that are developing some of those resources.

And so when those come on, that's going to help relieve even more individuals that are under what's called the 6,500. So we're going to be able to lower that population and then we're really going to be able to maintain with confidence below that 200. I'm so happy that we are on the other side of the pandemic and the state of the emergency, but we don't know what our real year is like yet.

We haven't had a full year, and so we're still dependent on kind of the charges that are made, the individuals that are in jail waiting for our diversion program to finish the development of some of those competency and those resources, so that's all we're asking is not so much to add more, but to give us those ten beds in the event that there is an influx that we just would not have had during the--prior to the pandemic. It's the mystery that we're planning for, and that's the reason why we're requesting those ten beds. And it's only for one year.

I just want to know, it's hard in a budget year that we have deficits to potentially approve something that is a 'what if.' This budget, we talked about workforce shortages. This could fund workforce retention for a full year. Just wanted to put that out there for my colleagues. We're going to hold this item open and we're going to move on to Issue Number Four: Extension of Ten Beds at Canyon Springs.

Sorry. This is Marni Sager again, Deputy Director of the State-Operated Facilities Division. We've spoken a bit already. I won't go back into some of the basics of the request. We have the request to extend the sunset of the usage of the ten beds at Canyon Springs in our Desert Star Unit, which is actually a separate and distinct area within Canyon Springs dedicated to crisis services.

And the reason that we're looking at this extension is because the ICF model for crisis beds at Canyon Springs has been shown to be really incredibly effective at providing services to individuals with cooccurring diagnosis who require crisis services. The extended authority would provide these supports while the complex needs homes are developed to provide similar services then in a community setting. The ten of these beds that we're talking about in the Complex Needs Proposal would offset the use of the Canyon Springs beds for crisis services.

And then we have seen an increase in our adolescent referrals. So five of those beds were added based on our existing data, and we're looking at projected development to be completed at the end of the 2024 calendar year. So, though there is not a date, as Madam Chairperson, you had mentioned earlier, that is our projection right now, and then we would be going through the licensure process and would be able, once licensed, to start admitting individuals. We are not looking for an--

So sorry. I missed that. What was that date?

So our projected development is we're looking to be completed at the end of the 2024 calendar year and then we would be seeking licensure at that point. So in terms of why the current models are not able to meet the needs of the population, a new model of--I'm sorry--the needs of adults and children's in crisis across the state are varied and we've seen are requiring much more intensive services.

The current state operative programs have worked to meet the needs of many individuals that are safely served across the system, but with mental health needs increasing in frequency and complexity across all populations in recent years and with a shortage of available services in the community, the continuum to support the population with individuals with developmental disabilities is lacking a responsive option to support the more intensive needs. A new model of service for individuals with complex needs is cooccurring.

IDD and mental health diagnoses would reduce the number of individuals served in much more restrictive settings, such as locked psychiatric facilities, institutions for mental disease, medical facilities, and out-of-state facilities, and will assist in meeting the growing need for acute crisis services as well as reducing reliance on Canyon Springs Community Facility. And we have had over the past, I think since 2019, we've had more than half of the individuals being referred to us from these extremely restrictive settings.

Thank you. Does LAO or DOF have any comments?

Chris O'Neill, Department of Finance. Nothing further to add.

I heard you. I saw you. I shared all my comments that I had on this one. I don't have anything further to add. Okay. We're going to hold that item open. Okay. So we no longer need ASL interpreters so we're going to go back to the original order. So we're going to go straight into Issue Number Five, and like to welcome the panelists who are going to be joining us for an Equity and Oversight in Regional Center Services. Long time no see, Director Bargmann. Thank you.

Coming back, we have a disability rights--from Disability Rights California, Vivian Haun, Fernando Gomez, a parent with Integrated Community Collaborative. Amy Westling is joining us from Association of Regional Center Agencies. On Zoom, we have Judy Mark, Disability Voices United, and we're going to start with Director Bargmann.

Thank you, Madam Chair. Appreciate the opportunity to speak on this extremely important topic, and again, appreciate the work of the staff and listing the detail in the agenda, which I'm not going to repeat any of that, but I want to be able to address the questions that before us today. So I've been asked to summarize the efforts that we've worked on to move towards a more equitable and access to services and then also how we're moving that needle.

What are we measuring to be able to see how we're moving that needle, and then some of the best practices and then some of the root cause, what we're identifying as root causes. I also have my colleague here who is our Chief Equity Officer, Leinani Walter, who will be able to provide some examples and further talk about the work of--briefly, just about Georgetown and the review they're doing of our Disparity Grant Program.

I want to lead with that anything that we do right now within Department of Developmental Services, as we're reviewing any policies or we're taking a look at evaluating things, we're doing it really through the lens of equity.

We worked with our Developmental Services Task Force, but also part of a community of practice that we had multiple departments and then some advocacy agency that worked with us on a community of practice, really taking a step back and looking at our vision and our priorities for service, access, and equity, and really lifting up the importance of that work.

So I'm not going to read you the vision statement, but I just want to kind of highlight that, that it is an area in which we don't have this discussion every single day. The other thing I'd like to highlight is that really having a seat at the table for our community is really important. Really became evident during the pandemic when we were seeing and having to do outreach to the community.

We really recognized that we wanted to make sure those communities that are really from marginalized communities that were having a harder time accessing supports and services was extremely critical.

I'm very grateful to the fact that we had our Disparity Funds Program during that time because over the years, when we've been issuing and being able to develop our community-based organizations with the numbers of community-based organizations that have been funded that we meet with on a monthly basis, they were the ones who were able to do that outreach.

And so as we look at how do we measure that equity, how do we take a look and the concerns--and certainly appreciate the analysis from LAO and then Disability Voices United and others--when we look at the cost and the average cost of spending per person and the concern--I've met with a lot of the families. I've met with them, and having them point to the purchase of service as to why is it that you're spending more on Whites than those of communities of color?

Absolutely appreciated that opportunity to dive into that. I will say that measuring purchase of service dollars is only one tool. When we look on an aggregate level, we have to remember, we have to factor in so many other variables because we are a service of 400,000 individuals. We have a budget that's proposed to be climbing to 14 billion dollars, which is really remarkable.

But when you take a look at, we serve children birth to three in Early Start. We serve individuals three through 22 that largely are living at home or in education. Doesn't mean that they don't have a right to Regional Center services, because they absolutely do, but largely, they don't have the same expenses as somebody that is over the age of 22 and living in a residential setting where you are seeing a greater expense and cost for individuals that are living out of home.

Now, when we take a look at the Respite services, that is, largely the Respite or services for individuals who are living at home, and we look at the demographics of our individuals that are living at home, largely, they are going to be our communities of color that are over the age of 22. So when we're looking at those supports, we do want to make sure that they're available for the communities.

And we have seen, when I take a look at five years ago, the average cost of Respite based on ethnicity, and I look at what it is in the last year, it is significantly different. We really have moved that needle. That needle has absolutely increased the average spending when you take a look at the average for that cost between Whites and compared to African American, compared to the Latinx community.

We do have some noise in our data as far as another category and not knowing kind of who that community is. And that's some of the stuff we're working on, kind of cleaning up that data. So while I think that's great, I'm not saying that we're getting equity because what we also have to measure when we're taking a look at a disparity in equity, what is the experience? What's the availability of services? Is that service being provided in the language of preference? So we also have to--and that's why moving to an outcome-based system of being able to measure the experience of individuals is so critical.

So as we're moving forward, and I'm taking a look at what are those things that we're doing, I'm just going to highlight some of the things and the initiatives over the last several years that we have put forward with the intent and with the purpose of making sure that we're opening the door to have service, access, and equity for all the individuals. But I also recognize that change takes time. I'm not a very patient person and I often want to have happen right away.

But that's why we have to continue to stay laser-focused on these issues. One of the first things we did, we established a research team. Several years ago, we did not have a research team. Our data--if we don't have accurate and reliable data, we're not going to be able to measure how we're moving forward. There's quite a few initiatives around that. We also have an investment in our electronic record system.

When we look at our electronic record system, extremely archaic, and so appreciate the Legislature in supporting that change because as we move and develop that, we're going to have real-time data and not only having information available to our community. As I noted, the Service, Access, and Equity Program of 11 million dollars every year, we have a number of grants. I'm not going to take the time to highlight them. Happy to provide that.

But we also have our Community Navigator and our Low to No Purchase of Service caseloads that we implemented as a long-term policy, and that was informed by our grant program. So when we take a look at best practices, we had noted that there is a navigator program really mirrored after the promotora program of being able to help families navigate not only the Regional Center service system, but also being able to connect to generic resources. And then the Low to No POS--ELARC. I'm using acronyms.

That's not fair for you. East LA Regional Center. They had years ago started a Low to No POS under the grant program, and that was for families who primarily were monolingual, that had no purchase of service. And so what we did in prior budget acts, we were able to replicate that across the state. And now all 21 Regional Centers have this program.

We've implemented a language access and cultural competency program because as we take a look at disparities, we have to make sure we're sensitive to cultures because we do recognize culture has an influence. We recently had approval and are in the process of implementing the coordinated family supports because recognizing families who are living at the home have clearly expressed, what about services and supports and helping us be able to coordinate those services?

So right now, I'm happy to say that we have a couple of Regional Centers that have vendored several providers. This is a brand new program that we have coordinated, family support sets for families that have an adult child at the home, and really recognizing that those families are primarily those that have multigenerational families that really need the supports to coordinate.

And this is one of the key things. We did this in the last year to really address service access and equity in our continuum process of improving and opening that. Provisional eligibility: I noted that before for those children from three and four-year-olds. We talk a lot about autism and we talk about service access inequity.

The reason why I highlight provisional eligibility is because through the work with our autism specialist, we had noted that we were seeing children from communities of color that were being diagnosed for autism at a later date. So having provisional eligibility, it allows us to be able to have those extra time to be able to see those children, and then deaf service resources. So we have a deaf service specialist. We've increased our resources for deaf services.

I would also be remiss if I didn't highlight our tribal communities. So we were able to have 500,000 dollars that is for tribal engagement. Very unique services that we were able to do, listening sessions, and I know this is one of the many things that our Chief Equity Officer has really dedicated a lot of time to kind of bridge that resource in that gap. So again, it's similar to the safety net. There's not just one thing.

While we have our Service Access and Equity and the focus work, it isn't everything that we're doing these days. I'm going to have Leinani speak to question two for you, but I do want to just talk a little bit about the root cause and taking a look at--we have to look at the whole person. We have to look at the whole family for root causes and also outside of Developmental Services.

So when we take a look at helping individuals not only access Regional Center services, it's like, what are those drivers that are being the barriers? Is it language? So when we take a look at language, not only doing translation or interpretation, but are we doing it in plain language? Because we have to ask the question, is the resources accessible? Is it something that is meaningful for the person?

So as we're doing that work, we're looking forward to the report by Georgetown, who's not only looking at our Disparity Grant Program, but one element that they are doing is a root cause within the Disparity Program. It's not a comprehensive one, but I'm looking forward to seeing that report which should have a release of that draft report by middle to end of April. And so Leinani Walter will just briefly touch on question two.

Thank you. Leinani Walter, Chief Equity Officer at the Department of Developmental Services. Nancy touched on some of the areas. I just wanted to highlight in the Community Navigator Program, one of the best practices that we saw in a number of grants is this model: a health worker model, having navigators working directly with families with lived experience, a shared culture, language, and having the ability to help families navigate systems.

We saw that model in the grant program, and we're so happy that the Family Resource Center Network statewide, a longtime trusted partner in the community, is now part of and contracted to provide those services. Over 1,200 families have been served individually. Close to 3,000 services have been supported through this work just in the last nine months. There are over 45 navigators statewide in all 21 catchment areas, and that work continues to hire navigators to implement.

The Tribal Engagement and Early Start: just recognizing that that model of the Tribal Engagement is to listen, not just to talk, but to actually hear and listen from our tribal leaders and our tribal nations. And that's been, as Nancy noted, a really important endeavor. But it's also opened up so many relationships and opportunities for Regional Centers to connect with their local tribal nations, not only through listening sessions, but also through the first--

Recently, the first three cultural trainings for Regional Center staff has been hosted by the California Family Tribals Coalition, which is the lead in this effort with three lead Regional Centers at San Diego, Far Northern, and Kern Regional Center. So that partnership is leading to relationships across the state for the first time. And just to highlight, the first American--Native American developmental disability conference was held last year with this funding, and it'll continue this year in a symposium.

And just to highlight just one more, the Low and No POS, as Nancy said, enhancing caseloads, another amazing model that we are hoping will continue to reflect some of the seeds born from the grant program. And I think, Nancy, those are the highlights. Thank you.

Thank you.

Perfect. We're going to move on to Vivian.

Is that better? Yes. Thank you, Madam Chair and Subcommittee Members. My name is Vivian Haun. In addition to being an attorney at Disability Rights California, I have a brother who has autism and is served by a Regional Center. As the oldest daughter of immigrant parents, I grew up going with my mom to meet things about my brother at school and at Regional Centers, helping to translate and helping my family navigate complicated systems that were clearly not designed for us.

Today, that feeling is still all too common for people of color, thousands of whom call DRC every year seeking legal help when they feel they haven't been able to get the kind of services or support they need from their Regional Center. And it's more than just a feeling. It's reflected in the numbers which have shown stark disparities. On average, for every dollar spent on a disabled person who is White, our system spends a little less than 50 cents on services for a disabled person of color.

What is causing this? With systemic racial disparities, the answer is never simple, but the number one reason we hear about from our clients is that they can't get what they need because they are told Regional Center policies won't let them. Take the example of social recreation and camping, which had historically been one of the services that had been used the most by communities of color but were cut in 2009 as a cost-saving measure.

In 2021, the Legislature brought them back with great hope, the hope that restoring them could make a real difference in reducing disparities. But what our clients are telling us is that social recreation and camp have been incredibly hard to come by because of Regional Center policies. For example, at the Regional Center of Orange County, their formal policy on social recreation states that, as a general rule, they don't fund it. To put it mildly, this doesn't help families of color get more services. It makes it harder.

And Orange County isn't alone. Across all 21 Regional Centers, social recreation policies pose all kinds of restrictions, like 'you can get it, but only if you give up hours of other services. You can get it, but only for activities that take place outside of a parent's working hours.' Or 'we'll pay the registration fee for that recreation and parks class, but not for the one-to-one aid support or the transportation your child may need to be able to participate.'

And though it's not an official policy, as a matter of practice, what we've heard is that the only way families can get social recreation at a lot of Regional Centers is by having to pay for it upfront and waiting for reimbursement. Policies and practices like these limit access for everyone, but especially and disproportionately for working parents and lower income families from communities of color. And none of these restrictions are stated in the law.

They were made up by Regional Centers and reviewed and approved by DDS after years of listening sessions and workgroup meetings at both the Department and Regional Center levels about service, access, and equity. But the good news is that if they're just constructs, that means that they can be deconstructed if we make different policy choices.

For example, if we strengthened our laws to make it crystal clear what the Legislature's intent was here and do more to ensure Regional Centers have policies that support and carry out that intent instead of hindering it. And of all the policies that disproportionately keep disabled people of color from getting the help they need, some of the biggest barriers are the policies that say, 'that's not our responsibility.' And that shows up in two key ways.

One is saying, 'that's some other system's responsibility.' For example, Regional Centers typically say no to things like behavior services or alternative communication devices for school age individuals because, according to them, it's the school district who takes care of that. But what that doesn't account for is the fact that the school's legal responsibility to address those needs applies only when the child is at school. Kids still need support with behavior, with communication and so many other things on weeknights and on the weekends.

And they and their families need and deserve support then, too. In fact, that right for people with disabilities to have the supports they need to be able to live in their own home with the people that they love in their own community is the very heart of the Lanterman Act: entitlement.

The other way Regional Centers often say, 'not it' is by saying the thing that you're asking for is a parental responsibility, not a Regional Center one, that it's something all parents should just do for their kids, disabled or not. Who gets to decide that? We get that we need to have rules and priorities so that we can spend our limited public funds wisely. But how should those rules and priorities be decided? Instead of continuing to do it Regional Center by Regional Center.

If our system has guiding principles we think should be at the heart of everything we do, then maybe we should start there by clarifying and doubling down on what those fundamental principles are and aligning all of our policies accordingly, statewide across the entire system. And it's this critical need for systems level solutions that I want to focus on.

To address racial disparities, the Department has made some great investments in cultural navigator programs, as Ms. Walter and Director Bargmann have mentioned, to help underserved people better understand and navigate the Regional Center system. But over the years, what we found is that as helpful as they are, promotoras and navigators are just not enough to really move the needle by themselves.

If the problem is a system that too many marginalized people experience as a dense, impenetrable jungle that they can't find their way through, then instead of or in addition to investing in having more guides or better maps, let's invest in making the jungle less impenetrable.

Let's clear out some trees and paths and build some paved roads so that our system no longer depends so much and puts so much burden on individuals to find their own way because those burdens end up falling most heavily and disproportionately on communities of color. No one here today intends for that to be the result. But systemically inequitable outcomes that keep happening over and over again without any deliberate intent are what many people would call structural racism.

And we know that structural racism is a structural problem that requires structural, intentionally antiracist solutions. Let's build that infrastructure together. Let's find a better way to balance local Regional Center discretion with the idea that some rights are just too fundamental to be discretionary.

If the benefit of Regional Centers having lots of local control is so they can be more responsive to their local community, then let's make sure that that happens, that the needs and voices of that community, including and especially people of color with intellectual and developmental disabilities, are what truly drive and set our systems' policies and priorities. If we do that authentically, in conjunction with the Department initiatives that are already underway, we should start seeing the difference in racial disparities data.

And I appreciate what Director Bargmann said earlier about how spending disparities alone don't really give us a full understanding of equity in our system. What will is when we finally have data points, data that shows how the system is doing at serving people, at achieving these core principles, choice and control over your own life, community integration, the ability to live on your own terms, where you want and with whom you want, doing what you want.

When we finally have those data points, if we stratify that data by race and ethnicity, we should not see much of a difference or any difference at all. Right? Ideally, for me, that will be the true measure of how equitable our system truly is. Thank you so much for your time today, and I welcome any questions that you might have.

Thank you, Vivian. We're going to turn over to Fernando Gomez.

Yes, good afternoon, Madame Chair, SubCommittee Members. It's an honor and a pleasure to be here today in bringing a perspective from that of a parent and a community member, especially a person of color. My name is Fernando Gomez, and I'm a parent of a 16-year-old son with down syndrome. He is served by the Regional Center system, and I'm also the cofounder of the Integrated Community Collaborative, which we refer to as the ICC.

ICC is a community-based organization that's composed of parents and self-advocates through lived experience and years of intensive training help other families navigate the complex systems of support on a peer-to-peer, grassroots level. Through this ground level of engagement, we experience firsthand the multitude of situations that not only are the cause or contribute to disparities, but also what many families find intimidating, oppressive, and overwhelming for many within the system who do not feel it as being equitable.

I do want to add that when we first came together as a community and we had the idea of creating this community organization and we presented it to the Department, starting with Director Bargmann and her staff, it was embraced, and we have felt empowered and encouraged to really continue with this level of community outreach. It's a different outreach based on the fact that it's relationship-based.

I know, as Vivian alluded to the importance of the navigator programs and so forth, but we feel that with all this information and the ability to navigate a system, it's important to be able to hold hands and really truly engage into it. As part of our efforts, we do have several hundred individuals who we do serve in the San Fernando Valley who are part of the Service Access and Equity Grant that Director Bargmann and Lenani mentioned earlier.

So what we see today is that our community has woken and it's largely united in advocacy and voice. Equity, accountability, and transparency are key areas of focus, while the experience of navigating the system must be more effective and must be more respectful and of course, more person-centered. Some of the key problems that families face in trying to access appropriate services from Regional Centers, they're not new to this conversation.

And it starts from the time families engage in the initial intake process and find the systems to be lengthy, unreliable, and really with no clear and very--or defined steps of process. I do want to share a brief story of how, in this particular case, the system failed this young lady. We met Marisa when she was about 17 years old. She's blind, she's deaf, and she's also mute and has an intellectual disability.

The family, being a family of color, had very limited understanding of the process and accessing support. So she, with the family, went through the intake process and was sadly denied twice. The family did not give up hope. And when one of our integradoras engaged and met with the families, they walked hand in hand through the system, and before her 18th birthday, were finally able to get her to become a Regional Center client, something that she needed from years ago, and can never be able to regain those years of support that was lost.

So the negative impact we will never know that it had on her family. But unfortunately, she's not alone. This happens to many families who are sent away to look for help somewhere else. Another area that prevents families from accessing services is the requirement to use generic services or resources first.

The lack of help in figuring out this process with language barriers and even lack of the proper access to documentation, continues to put a denial on the services which lead to families, in most cases, giving up. Ideally, the Regional Center should provide services in the meantime that they seek for these services, but that hardly ever happens.

For those who do see the process through, the Regional Centers, in many cases, use the generic resources as a way to deny any additional services by saying, 'you really don't need them anymore.' So when you look at our community members who are school age, Regional Centers will not pay for a service because they say it is the school's responsibility. So you need to advocate with a school system then, and then it's another complex system. I would like to share a little bit about my son Oscar, who needed speech therapy at an early age.

And at that point, therapy was crucial for him. But the Regional Center at that point told us that it was the school's responsibility. When we went to the school district, well, they were told that there are multiple reasons why these type of services can only be provided in a session setting. In addition, the school never really expected him to speak. Now, at the age of 16, Oscar is starting to speak.

So we wonder, what would the difference have been if he had really received the supports that he needed at the time that he needed them, which was really around the age of four. At the service coordination level, there continues to be a huge disconnect with families. At times, it is more like a guessing game, where families are expected to communicate to a service coordinator what the family needs and then they back into what they do have or don't have to offer.

This has been for years within the Regional Center system, referred to as a culture of no. So within the 21 Regional Centers, we see 21 different ways of service coordination. Even within Regional Centers, there are many different ways that people provide service coordination, and it's really very hard to understand and navigate. Internal policies, services like Social Rec, in some cases take years to implement.

So we have seen and experienced improvements within service coordinations, and there are about five Regional Centers that we really have a great relationship with, and we see that there is improvement, and we see the results of that improvement based on this relationship-based interactions. But yet we still see that there is a tremendous amount of need that goes unmet.

Many families still feel that they feel intimidated when they interact with the Regional Center system, and some say that they've even been retaliated against when they complain about their child not getting services. So there is very little sense of urgency at Regional Centers in providing or having access to services. Yet for many families like mine, we do feel that sense of urgency. We even feel like it could be a matter of life and death.

So many times we hear that the Regional Center is restricted by compliance and they don't want to be audited. So a decision on services can take months, in some cases years, to even access. So the burden is left to the family to find a solution on their own. So the ICC has been working closely with Disability Voices United to produce a set of specific recommendations to reduce barriers in accessing services and provide greater consistency and oversight at Regional Centers.

My colleague Judy Mark will be discussing them in a few minutes, and I would just hope that this Legislature would then look at these opportunities and look at a way for people like Marisa and my son Oscar to find a better outcome on access to services. And in your earlier panel, I really liked what Jackie was saying, that the focus is not on the problems, but on the possibilities, and I believe that that speaks to many in our community. Thank you for this opportunity to share.

Thank you, Fernando. We're going to move on to Amy Westling, Association of Regional Center Agencies.

Good afternoon. Well, those are really sensitive. Good afternoon. My name is Amy Wesling. I'm the Executive Director of the Association of Regional Center Agencies. I really appreciate the opportunity to be here today and part of this panel. Thank you to the Members and your staff for the very comprehensive agenda that sets a fantastic base for this critical discussion. First and foremost, Regional Centers are committed to ensuring that people receive services that they need on an individual basis.

They are driving and striving to provide those services that are culturally responsive and competent, and they are working every day to meet the needs of individuals and their families. We understand, as Ms. Haun noted, that the issue that's before us here today isn't unique to the Regional Center system. It is an issue that is more systemic than just the services that are offered by our system.

And I personally really appreciate that we have the opportunity to have targeted conversations about this critical topic here about our system, and also that the state has prioritized and invested so much to try to unravel some of the inequities that we see. So we've been talking about this topic for quite some time, and I think it's time to take a step back and say, what have we learned? What are those things that we have learned through all of this?

And I think the key question before us is the one that Director Bargmann raised during her testimony earlier in the panel. How do we measure equity? We know that we can measure it in a variety of different ways. We can look at purchase of service data, and if we do that, then we can look at it at a very high level that isn't controlled for age or place of residence.

As Ms. Haun pointed out, when we look at it from that perspective, it tells a story about significant inequities, many of which are driven in large part because of age and place of residence. But we can also look at it in a much more detailed way. And one of the things that we learn when we do that is we see that there are some pockets where things, even from the purchase of service standpoint, look really good.

And that is in our Early Start services, as well as in the provision of some family supports like Respite. And so what that invites us to do is take a look and say, 'okay, if things are working well there, why?' What can we learn from those services that we can apply elsewhere as we seek to achieve greater levels of equity? And it was through one of those deep dives that I believe the idea for the coordinated family supports that Director Bargmann mentioned came forward.

We recognized that when we controlled for age in place of residence, we still saw gaps in the funding levels for those individuals who were adults who are living at home with families. And we know that nonwhite individuals are more likely to live at home for longer with families. And so we have to do something to address that. And I personally, and we as a system, are thrilled by this opportunity.

In terms of other things that we are excited about and we think will make a difference, one of them is the ability to pay bilingual staff who do critical work with individuals on a day to day basis, those direct support professionals, be able to pay them a stipend, because I personally can think of nothing more terrifying than being a family member who doesn't speak English and is turning over the care and supervision of my loved one who has a disability to someone who doesn't speak my language.

So the more we can build up the pipeline and the availability of services that are culturally competent, the better we're all going to be and the availability of those linguistically appropriate services. Another project I'm personally excited about is a project that the Special Needs Network is working on to enhance the pipeline for clinicians who are nonwhite, so that they can begin to see, so that we can begin to see greater representation of nonwhite individuals and clinical services that are important to our community.

Additionally, we know that when you have an individual in your family who has a developmental disability, as both Mr. Gomez and Ms. Haun noted, it brings lots of systems into your life. And it's not just the Regional Center system that can be challenging to navigate, it's other systems as well.

And so we know that part of what makes a difference is the availability of quality service coordination and adequate time to spend working with that service coordinator so that they can help to walk you through accessing other services. If I could wave a magic wand and say nobody should ever have to access a service outside the Regional Center, I would do that, but that's not our reality because of federal funding rules.

And so we have to figure out how to make these complex systems work better for people and how to provide them with assistance in navigating those things. We've also heard a lot about inconsistencies between Regional Centers, and I believe Ms. Haun raised the question of how do we balance standardization and local responsiveness? As an association, one of the things that we have committed to doing is, by the end of this calendar year, smoothing out some of those differences between Regional Centers in four critical ways.

One of them is the vendorization of new service providers. That's the process where Regional Centers contract with service providers. We believe that that process should look the same whether you're in San Bernardino or Redding. Enhancing the availability of data access by making that information more uniformly available, it's there, but it doesn't consistently appear on each Regional Center's website in terms of the labeling or where it is on the website. So we're going to work on that issue.

Sharing telehealth resources for intake, we know that those services are not geographically tied, and so if we can make those more broadly available across Regional Centers, that just makes sense. One of the other things that our data has told us is that those children who are in the foster care system struggle to make it through our intake process because they move from place to place.

So we've committed to a policy that all Regional Centers will implement where whichever Regional Center starts the intake for foster children, they will finish it and they will then do a warm handoff to service coordination at whatever Regional Center that child is living at at that time. And then perhaps most critically, one of the things that we understand and believe is that families' needs are not ethically sensitive.

So if Ms. Haun's family lives in Orange County today and picks up and moves to Redwood Coast Regional Center, the fundamental needs of the family don't change. And so one of the things that we're going to be doing is creating a standardized assessment that will be implemented across the state that will determine the volume of family support needs that each family has and whether that's Respite or personal assistance or daycare so that we iron out some of those historic differences.

One of the questions we get asked a lot is what have we gotten for our investment in the Service Access and Equity Grants and the additional projects that have really been financially supported through this work? One of the things that I think is most critical is we've gotten cultural specialists at each Regional Center and much like Ms. Walter gets to spend her professional career focused on how to infuse equity into every discussion at the state level, that's really the role of the cultural specialist at the regional level is to be that voice that says, 'how does this impact the various communities we serve?'

We also have really seen that this project or this program, the Service Access and Equity Program, can work as a lab to let us know what works and what doesn't. And I look forward to the work that Georgetown is doing that's going to tell us about that, but really appreciate that in a few instances I believe that Ms. Walter highlighted, it worked well.

We saw that in the Community Navigator Program, as well as the Reduced Caseloads for those with Low or No POS through Eastern Los Angeles Regional Center, that data told us those programs were working. And then the state took the additional step of saying, 'okay, now we're going to make that broadly available statewide.' That's how this program should work. It should allow us to pilot things that then are more broadly available and then what is still needed?

What we need is first and foremost to see all of the great investments that we've made come to fruition. And we need to stay consistent in this work. And we need to remember that all of this is tied to the individual needs, that ultimately, as Ms. Haun said, the piece of data that we're missing is are people's needs getting met? And as we drive towards more outcome-based systems, we know and expect and hope that we will have that information.

So we need better data, we need consistent data, and we need to identify--back to Director Bargmann's question--how do we measure equity? How do we consistently measure it? What are those tools? Or what are those markers that we're going to use? And then we just need to stay focused on those and drive towards the goal. Thank you.

Thank you. Our last panelist is going to be Judy Mark.

Hi, everyone. I'm Judy Mark, President of Disability Voices United, an organization directed by people with disabilities in their families. I'm also the parent of Joshua, a 26-year-old man with autism. Thank you for letting me appear by Zoom, as I'm actually in Madrid, Spain, right now visiting my daughter. So let me get right to the point because it's like bedtime right here. California is failing people of color with developmental disabilities and people who are served by Regional Centers that have historically provided few services.

We recently produced a report called 'A Matter of Race in Place,' which shows that the state has made little progress eliminating disparities for adults despite millions of dollars in investments, even when the research accounted for the underlying cultural differences and different living situations you heard talked about. The bottom line is that Regional Center clients receive vastly different levels of services depending on the color of their skin and where they live.

Latinos in particular, receive less than half the amount of services as Whites at every single Regional Center. I want to share a chart with you right now. Let me make sure it works. Hoping that you can all see this, I want to share a chart from our report. It looks at the intersection of race and geography for adults served by Regional Centers. The horizontal lines show the variation in spending by race. The wider the line, the greater the disparities.

You will also see the vast differences in average spending between Regional Centers, from the high at Golden Gate to the low at Inland Regional Center. The highest spending Regional Centers have much greater disparities between races. But at the lower spending Regional Centers, racial disparities are smaller because, frankly, no one is getting very much.

Individuals and families of color report, they believe the cause is systemic racism rooted in a bias toward white educated families with the resources to fight for services and the ability and time to navigate an intentionally complicated system. Families at underperforming Regional Centers have complained for years about the unfairness of people from other areas receiving more services. Too many people tell us they just don't trust their Regional Centers.

With that in mind, disability voices united and the integrated community Collaborative have a set of recommendations for the Legislature to bring about equity, accountability and transparency to the system. Specifically, to create a more equitable system, the legislature should require DDS to develop a standardized individual program planning process that follows federal law and is strength based, culturally sensitive, person centered, and offers choice and inclusion to eliminate denial by delay that you've heard talked about.

The legislature should lower the timelines for responses from Regional Centers to requests for eligibility services and assessments. And we should require Regional Centers to return our phone calls and emails within two business days. Current law requires Regional Centers to actively assist their clients in getting other generic sources to pay for services first. But as Fernando and Vivian talked about, rarely does that happen. The legislature should require Regional Centers to document how they are assisting their clients and what the outcomes were.

DDS should develop a set of common service types that all Regional Centers must provide. No more should people in one area have no access to a service that neighboring Regional Centers offer. This is a statewide system, and all services should be available everywhere. The legislature should create a statewide vendorization system for service providers so that individuals can access a wider range of providers.

Now, to ensure accountability over the system, we must set high bars for Regional Centers and service providers and provide consequences if the performance is substandard. We need clear, unified, concrete performance measures that everyone understands, including people with disabilities and their families. If a Regional Center exceeds those measures, they should get rewarded. But if a Regional Center falls below those standards, there should be consequences. They should be subject to probation and corrective action. Another area of accountability are governing boards. Governing boards of Regional Centers.

They're named in the Lanterman Act to provide that oversight, yet in reality, they mostly rubber stamp what comes before them, and many have served on boards for decades. DDS should be directly providing the board Members trainings and ensuring people with disabilities are actively participating. We also recommend shortening the terms of board Members and lengthening the time in between terms. And finally, to bring a more transparent system. We believe it is time for Regional Centers to be subject to the Public Records Act.

Regional Centers are quasi governmental agencies doing the government's work. Yet the public does not have access to critical information. Independent charter schools were made subject to the Public Records Act, and the same standards should be applied to Regional Centers. In the past two years, the legislature has appropriated billions of new dollars to the developmental disability system. Last year alone, Regional Centers received funding to hire 900 new service coordinators, and most service providers got rate increases.

But disabled people and their families, particularly Latinos and other people of color, haven't felt any of these new investments. The developmental disability system is just not working for many Californians with disabilities, particularly people of color, this problem is big and it requires big solutions. We must work together to change the culture of no to a culture of trust in Regional Centers, especially among communities of color.

We believe our recommendations move us in the direction to a more equitable California where your race and place do not dictate your future. Thank you.

Thank you, Judy.

I'll wait for your. I do have a question, but I'll wait till you tell me it's okay.

Great. Does Dua for LAO have any comment?

Chris Odneal, Department of Finance. Nothing further to add.

Ryan Anderson, Legislative Analyst Office. It's been a rich discussion. I think the agenda lays out the issue as well. But we would like to highlight one issue that is raised in the agenda. You're driving in your car, an indicator light comes on the dashboard. It suggests that there's a problem there. The light itself doesn't tell you enough information to know exactly what the problem is.

Maybe the problem is with the light itself, but what you do is you pop the hood, you poke around, you figure out what the problem is, and then you go towards some corrective action that's targeted towards that problem. About 10 years ago, the state required Regional Centers to start publishing purchase of service data disaggregated by race, ethnicity and other demographic factors. These immediately demonstrated, just like an indicator light, that there was an issue. There are large disparities between different racial and ethnic groups.

The state then embarked upon a number of corrective actions that are laid out in the agenda and were discussed today. The indicator light is still on. We haven't seen movement in the direction that we were hoping to on the indicator itself. What's missing? Well, we never took the second step. We never popped the hood and did a real diagnostic to understand what exactly is the nature of the problem and how might we connect that with our corrective actions.

A lot of the questions that we're asking today in the panel about what exactly are these problems and why do they persist? It could be given some depth, some enlightenment, just through empirical analyses, and those have yet to be undertaken. So we would suggest that that would be a fruitful place for the state to start this discussion. That's all.

Thank you so much. I take pause because this panel was. I knew it was going to be difficult for me. Vivian, I share similar experiences. I'm a tia of my beautiful niece who's autistic, severe autism, and she turns three next week, so that means she will not fall under LAUSD to meet her needs. And I'm frustrated and emotional because I see the frustration in my sister and my brother in law.

By marriage I have a nephew who is five years old and has severe autism and is also struggling. And I see my sister in law and my brother in law struggle. We're Latinos, we live in the San Fernando Valley. And my sister in law had to hire a lawyer to get help. My niece, Esme, had from the get go, we knew there was going to be some developmental disabilities there.

Case workers at Regional Centers did not refer my sister to anything that said that a diagnosis will only come at three years old. If our diagnosis comes at three years old, then that means that there's no services coming before entering a school age. So recognizing that at 18 months you could receive some services, she missed a large portion.

She's still nonverbal, but in the short amount of time that she's been in school in Santa Clarita, I've heard 12 words come out of her, and it warms my heart of the potential I can see in my needs. But it also breaks my heart because of how much more advanced she would have been. I heard Amy some goals for the rest of the year. I've heard bilingual training, the investments we have in that 900 spots for new workers, the standardization for vendor selection.

What I didn't hear is training for our workforce, because what's happened is our case workers are also not all created equally, which in reserves is reason why Regional Centers are not created equally. I understand burnout is real. You can come in with the greatest intention, social worker, me, but I could be burnt out if I was in the clinical where I was in. Perhaps I'm not giving the greatest care, and it's not intentional. It's just like, personally, I'm just burnt out.

What is happening is that case workers are not providing our families with the exhaustive list of resources. It's a limited list. And that's not to say that the Regional Center is going to provide all those services, but to point them in the right direction. And if you indulge me, I guess you kind of have to. Right? I want to share some of the concerns that I'm bringing to this table, both as a Legislator, but as a family member to my niece and my nephew.

There are parents who are on waiting lists who have private insurance, and they don't know what to do because of private insurance. They're on waiting list to get services. Where do we turn to when Regional Centers tell them it's the school's job? At the end of the day, the Regional Centers are supposed to be trained in this. Schools aren't trained in this. There's maybe one or two people, ieps, but that's not their sole focus.

What happens then, when children are robbed of the extra amount of months they could have been before they turn three years old? There is no, well, whoops. Well, there's nothing we can do and then move on. We heard from Fernando. At 16 years old, your son started speaking. What could have happened before? In hindsight, I should have had this panels reversed, because this is where we talk about the prevention, the investments. And then the second panel is, what happens when we don't invest here?

Then we then have to invest in. Correct me. If the acronym is correct, it's because we didn't invest in these individuals before and really approach them in a holistic manner. I'm frustrated to see it. This is first hand experience, and my sister in law and my sister, they are stay at homes and moms now because it's a full time job. So then that turns into a single income. That's hard. And not everyone is like my sister and sister in law.

These are very loud women, very loud, and they speak English. Not everyone does. And I worry that if they're being treated like this, what happens to other people? I definitely would not go away with this topic. I will be very closely, because watching this, because if Vivian experienced this with your brother years ago, this is 16 years, my niece is three years old. It's still happening every single day. We're getting more and more.

There's an increase, and we're going to talk about this branch that was created later on. We're seeing such an increase. This investment in having caseworkers really understand and treat everyone with the dignity that they deserve is greatly needed. Amy, as a new member, would create this relationship with you and really, really dive in the accountability. Because I've mentioned this before, I'm not here for a headline to say, zero, we just implemented this program.

I'm here to see what's underneath the headline, because I feel like a headline is just for show. I want to hear what's happening. I know we don't have a lot of data, but we have endless amount of anecdotal information. And sometimes qualitative data is more important than quantitative data. So I'll end there. It's not so much. I think I embedded some questions there. So I'd like you to respond and then I'll turn to my colleague here to the right.

Yeah. Thanks so much and thanks for your willingness to share your personal story and your struggles and those of your family. And it's really honestly hard to sit across from you and talk about that and to absorb that. And so I appreciate the opportunity to think through some of this.

But in terms of, I think one of the questions you asked was related to staff training and how are we ensuring that as we add additional staff, as we work to reduce the caseload ratios so that each service coordinator has more time to spend with individual families, how do we make sure that's quality time and that that time is productive and that that relationship is a quality one?

And so I think one of the things that we talk about is as we move towards an outcomes based system, but we didn't really drill into what does that mean on the Regional Center accountability side. And many of the things that Regional Centers are going to be implementing as part of the Regional Center performance measures are encapsulated in the things that you brought forward.

So one of the things that will be rolled out is a standardized service coordination training or a set of service coordination trainings and competencies. In fact, we were meeting with the Regional Centers this week to talk about what are those things that are important to capture. And at the very top of the list was helping people to access generic services and how the service coordinator can be that source of information and support for people. That's one of the key things.

Additionally, part of the Regional Center performance measures is training in cultural humility as well as other topics in that area. Additionally, the legislature included in the budget, I believe, in fiscal year 2021. So some funding and some expectation around implicit, I'm Sorry 21-22 some funding and expectation around implicit bias training. I know that the department had put out an RFP and has just recently awarded that project, I believe, and so we as a system are changing and working to be more responsive to people.

And we recognize that one of the things that we've lost over the last 15 years as caseloads have gone up is that personal connectedness with people. And one of the things that we know is that we have gotten into a place that, and under Director Bardman's leadership, the state is trying to reverse the trend. We've gotten into a place where we measure the things we can measure, and we've just kind of accepted that that's the way it is. And those things aren't the most important things.

So as Ms. Haun mentioned, individual family experience, are their needs being met? Those are the things that we need to measure. But what we've historically measured are things like compliance with paperwork. Those are important. But are they the most important? No, they're not, as the story of your family highlights. And so we're moving more towards measuring those things that are the most important. Doing satisfaction surveys, providing people with training and information about what should they expect? Because we know, we can't just say, are you satisfied?

Because satisfaction is really a measure of your expectations versus your reality. We have an obligation to help people understand what they can and should expect from us and to hold us accountable.

And so those are all the transformations that are taking place right now and that we're in the process of shifting to, because at the end of the day, having worked in this system for a long time, I can tell you that it all comes down to that relationship, the relationship between the family and the people providing their service on a daily basis, the relationship between the family, the individual serve, their service coordinator.

But up until now, we've had a really hard time measuring the quality of that relationship. And so I'm personally thrilled that that's where we're headed. But understand the frustration that we as a system have probably overemphasized the wrong things as we've struggled to provide people with the service coordination that they really need and are entitled to.

Thank you, Madam Chair. I want to focus on the same thing, I think, and it's the generic resource discussion, certainly on page 39 of the material that we've been provided. You know, in this committee and others, I've listened to the agency secretary and other department directors talk about this no wrong door concept on several different occasions.

And the picture painted by the material and to some extent, our background material and to some extent the testimony is a picture of people bouncing between programs and agencies, attempting to find which agency to go to, which department is the right department, which nonprofit, which program is appropriate or not appropriate.

We certainly understand that as electeds, because that's what our district staffers do on a daily and weekly basis, attempting to connect the .s and the lines among state departments and state agencies, somewhat byzantine for even us. And of course, being the final tool in the tool chest. It's sometimes me and you would be surprised at how non responsive in some cases state agencies and departments are.

Even when I pick up the phone and call and attempt to find resources for people who are in sometimes dire straits and oftentimes very emotional, it's very frustrating for them. It's always frustrating for me, and it's, I assume, frustrating for my staff as well. So I can only imagine what individuals and families in the situations that we're talking about here, what they feel like when they go through that. So I guess my question is, how do we fix this?

I understand, ma'am, what you're talking about, but I also understand process and governments need to be efficient and effective, and this does not seem like a very efficient or apparently I'm sort of new to this subcommitee and the detail associated with health and human services financing, but doesn't seem highly efficient or effective in other settings. Certainly in local settings, we do a one stop shop where we have people of various, if it's in a city, departments come together.

So if you're coming in requesting a service, you have everybody collected there in some fashion. I guess we could do it electronically. We could do it the phone, we could do it in person where the questions are answered right there. And you don't have to get back in a car or a bus and go someplace else to talk to somebody else to explain the same story that you've explained four times before, only to get the answer that, well, you're not at the right door.

This is the wrong door. And I'm just wondering, and I'm used to asking questions. I'm a lawyer by training. I don't really have a specific question, except how do we fix this? And why can't we develop a process where someone who is in this situation, who needs to show that they've exhausted generic resources, they have obviously, a demonstrated disability, that needs to be a situation that needs to be addressed.

Why can't we create a situation where they come to one place, whether it's a resource center or something else, and talk to Medi Cal, ihss and maybe even the school district to find out who can help me? And if you can't, who can? Isn't that the question? And if it's resources, you're at the right place?

Vivian, it seems like you might have an answer, a response to that.

I do. And, Senator, I so appreciate your questions, because you have really hit the nail on the head. This is such a fundamental problem and barrier. And you're right about the no wrong door. We frequently refer to it as too many people experience an all wrong doors system. They are literally told, go to that door down the hall. Then they get said, oh no, now you have to go to that door. Which door? I don't know. And I think that's part of the problem.

And to miss Westling's credit, I think we've had some good conversations about how critical it is for people to have that support, which, as you've just pointed out, is really hard to get on a personal basis. Right. On a one to one basis, which goes back to what you were saying about the importance of service coordinators and how I think years ago maybe the system wasn't perfect.

But I think just anecdotally what we've heard is that it is true that I think prior to 2009, people generally did feel like they had better relationships with their service coordinators. And anecdotally, service coordinators did have more time to do some more of that navigation of generic resources than they have today. So it does make sense that service coordinators would play a very real role in helping to address that problem.

But I think you're also right in that if you're always doing things on a case by case basis, one on one, it's not ever going to be enough. The last time I flew into Sacramento before today, from the plane, I was looking down, I live in LA, so I was looking down and I saw the river that was snaking through, through the field and I was thinking about testimony. And when I saw the river, it made me think.

It just reminded me of how people experience the system when people are told that they have to exhaust generic resources. Go to your school, go to MediCal, go over there to get it. What it feels like is they're being told it's across the river. Go over there and get it. You have to go and swim. You're on your own. Swim across the river, go over to the other side. You can get it. Great.

If not, if you can swim back and let us know, then we'll talk. Good luck. When you have a promotora or a navigator or a good service coordinator to help you with that process, it's kind of like they're giving you a kayak or maybe a kayak, a guide. Right. You're helping people get across the river. It's better than being left to swim on your own. But we're never going to have enough kayaks. We're never going to have enough kayaks. It's never going to be effective.

It's never going to be efficient. Instead of only and ever funding more and more kayaks, we need to build a bridge. We need to build a bridge across the river to the other side so people can just walk across, many people all at once, a bridge.

And I don't know of any other way to build a bridge between two systems than at the systems level, which is what I think you're referring to, with some kind of process where the systems can come together at a state level and figure out systemically how do we do that? How do we build that bridge so that people can move across between systems more seamlessly and easily?

I want to make sure, give some time also to Amy, I feel like you wanted to answer a little bit. Thank you, Vivian. Yeah, I appreciate it.

As I mentioned, in an ideal world, we would have exactly what you're talking about. We would have a place where people could come and it would all be solved in one meeting. We could talk about, okay, what part of this is going to be MediCal? What part is IHSS? What part is the schools? And we would solve all of that.

I think my perspective, having worked in various parts of the system, including as an advocate, has always been to recognize that one of the things we've got to do is figure out where are those steps we can take next to make things better and to build some momentum in this area. One of the things that we did during the recession and Ms. Haun referenced prior to 2009, that's kind of our marker.

One of the things that we did was in an effort to save money, we made things harder for people, and we've been unwinding a lot of that since that time. One piece that, for instance, we made harder was we said, not only do you have to go and ask IHSS for that service, but if they deny you, you have to go back and appeal. If the Regional Center feels like you might prevail, if you appeal, we could unwind that expectation.

As Ms. Haun referenced, at this moment, in this time, we can provide people with service coordinators who are equipped to help people navigate agencies and navigate services and who have the time to do that.

I want to interrupt. Does that mean get answers? Because service coordinators we're familiar with, our people, do case management documented in a system, and they have a case, and I expect them to solve the case if they can. And you can certainly expect during this pandemic, they got a lot of experience in a lot of different areas that they never thought they would, but they're not the experts.

But what we were able to do internally here is get them people in agencies that were assigned to them that they could call to get the specific answers. So it's not having the constituent try to navigate through the system with some advice from the staffer in the district office. It's fixing the problem.

So if by service coordinator, you're talking about a case manager, a case manager who is evaluated on the performance of case management, now, that doesn't mean you every single time you solve the problem, but it's not. zero, I talked to him and I told him where to go. IHSS is the issue. Here's what I know about IHSS, but let me call my IHSS contact and let me get you the answer. Are you eligible for IHSS or not? Okay, you're not.

So let's now move to whatever the next step is. So that's what I call service coordination. And I guess in the social work setting, you'd call it a case manager. I'm not one of those either, but that's what I think we should investigate, and I don't know what that costs and I don't know the volume, but somehow we can't have people with disabilities bouncing around the system.

However they're navigated, which means navigation means you get the shortest route from point a to point b, and you can go talk to those at point b. Am I making sense?

Yes. And I think that there are certain services where a liaison, for instance, a Regional Center has a liaison with a health plan, or they have a liaison with child welfare. And some of those things can be worked out at the systems level with things. One of the complicating factors in our world is you've heard us talk a lot about services in the Regional Center world are individualized. Services in special education are also individualized.

The number of hours of ihss that may be authorized is also individualized. And so it's not as streamlined as pick up the phone. The IHSS worker says, zero, yes, this person's eligible, and based on your description, we're going to authorize x number of hours and we can move on.

It's really having the, yes, we call them service coordinators, but it's having the case manager walk the person through the process and have the bandwidth to support them at each step of that way and have enough and have awareness of the eligibility criteria for the various systems and how to make that referral and how to be there for the person, because, as you put it, having them bounce around isn't a good use of time or energy for the family.

And we know that when you have a child with a developmental disability, the most precious commodity you have is time. Time measured in years, but also time just in terms of the bandwidth you have because you interface with so many agencies. And so really having someone there to walk you through that and to be there to support you is really critical.

Listen, I don't want to belabor it. I mean, you know, Mike, I'm concerned I don't know enough about it to offer a solution to you. I do sit on the Subcommitee, and I've done budget for going on 11 years. So if it's money you need, you're at the right spot. If it's an organizational suggestion, at least now I have a social worker, licensed clinical social worker, to my left. But if it's a process you need, it's not me.

But I'd like to see the next time I read the backgrounder, if I'm here next year, that it reads differently than the one on page, the paragraph on page 39. But thank you for all that you do, and I appreciate your comments and keep plugging away. And I'm here to try to help if I can. Thank you, Madam Chair.

Thank you. I'd like to turn to Judy and make sure some final thoughts here.

Thank you so much. And thank you, Senator Menjivar, for talking about your family members. And I personally want to offer our assistance in any way to your family to help them try to navigate these difficult systems. And I also want to thank Senator Roth. We have very concrete suggestions and are happy to discuss with members of the committee our very specific suggestions around generic resources.

What we know is that service coordinators on the whole are very untrained, and because of that, their lack of ability to help people causes this lack of trust among families. Families see them as barriers, and the relationships between Regional Center service coordinators and families often become very adversarial, which is the opposite of case management. Right. You're supposed to be turning to them to help you, and instead you're feeling like you're constantly hiring a lawyer and fighting them.

So what do we have to do to turn this around? We have to build back that trust by making Regional Center service coordinators document exactly how a person can access those generic resources and also document how the Regional Center is going to help them get it. So if they say, you got to go to the school district, or you've got to go to MediCal. You need to write down in that person's IPP their individual program plan.

This is how you do it and this is exactly how I'm going to help you do it. And then close the loop by saying, yes, I helped you do it, or it was denied. The second very specific recommendation we have is that if the generic resource does not commit to paying for that service within 45 days, the Regional Center should have to pay for it.

And we know that people will say.

oh, that's going to cost so much. But this is all the same money. This is state and federal dollars, whether it's from IHSS, medical, the school district, it's all the same taxpayer dollars. It's just going into different pots. And to have these silos makes no sense to me. And so there's a lot of very specific recommendations. Happy to talk with you, Senator Roth and Menjivar, to go through our recommendations because I think that we know what can be done and can make a difference. Thank you.

Thank you so much. As final thoughts here, my colleague to my right question if you'll be here next year, you know, he's terminating out. I'm going to be here for 12 years. My goal, or I challenge everyone here, or maybe the two Members here, is that next year the briefing looks different and then the following year. What I cannot accept is that next year it's exactly the same thing. And I'm not just saying that without any support. I want to support. I'm here to support.

Whether it's financial, I can't guarantee that 100%, but how can I advocate on this end for that? I want to, outside of this, create smaller groups of discussion to see how we can move forward. But I do want to see some change. So thank you so much for coming in and at least starting the conversation for me as a new member and continuing to move the marker here. I appreciate your time.

Thank you.

We're going to move on to issue number six, Autism Services Branch. Welcome, stranger.

I'm still here. No, not at all. No important discussions and I'm waiting for our autism specialist. Thank you for the opportunity to present on our Autism Services Branch. Throughout the discussion today I've highlighted several times the growth in the number of individuals with autism and much of the work that we've been doing. Several years ago I had an opportunity to create a physician at the department and then I had just an incredible opportunity of hiring this professional to my right.

And Dr. Lauren Libero has just been an absolute gem to work with us at the department and really guided the work that we've been able to do to take a look and lift the lid on autism services. So I just want to highlight a few things, why this is so important. And then I'm going to go ahead and pass it over to Dr. Libero to present on the proposal for the autism branch and to answer some of the questions.

When we started seeing kind of this increase in the number of individuals with autism, we also started seeing that there was, as I had noted, some inequities as far as those that are eligible at the time. So we were aware and the work that we were doing within our African American focus group and looking at disparities. All of a sudden we started looking at some more of the data and we had recognized that we're having a lower representation than the community of communities of color.

And the timeliness of being able to have a diagnosis of autism. Certainly a lot centered around that. That's what really was instrumental in us moving forward. The implicit bias training, because when you are working with individuals and you're seeing that, hey, or is the clinician looking through the lens of the clinical approach of the assessment, or is there an implicit bias as to what is kind of the diagnosis as far as autism? Or is this a behavioral problem, if you will?

So we were recognizing there is a problem and that was really through the work of our autism lens of Dr. Libero and working with Leinani Walter, our equity officer, and looking at those things.

Additionally, when we're starting to see the larger number of individuals that are going to be graduating and really wanting to look not only at the data but also looking at kind of the spectrum and understanding there's a real difference between the needs of individuals and knowing that we are in the next several years going to be seeing a number of individuals graduating high school.

But I do want to pause there, give Dr. Libero an opportunity to share some of the work that she's currently doing and to answer some of the questions that are in the agenda regarding the autism branch.

Hi, Dr. Libero, autism specialist at the Department of Developmental Services. Thank you, Nancy, for that introduction. Just to give you a little bit of an overview of this proposal and the context, the number of individuals that we serve through the Regional Centers that have a diagnosis of autism has increased 157% over the last decade. And currently among our lantern and caseload, autism represents 46%. But when we look at children from the ages of zero to 21, it's already our majority share at 67%.

So we're facing a future where autism is going to become the majority share served by Regional Centers across the lifespan for the first time in the history of our system, which is a monumental change and I think deserves an increased focus on to ensure that we have a system that's prepared to serve those individuals and their unique needs. We also looking specifically at the autism caseload, 80% are children zero to 21.

And like Nancy mentioned, as those children age, they're going to be transitioning through the school system and then into early adulthood and then across the lifespan and age in our system. And so we really need to ensure that we have an array of services across the lifespan to ensure individuals are supported at all of those age time periods.

A couple of the successes that we've already had through the work focusing on autism, Nancy mentioned the provisional eligibility and the implicit bias training already, so I won't run through that unless you have more questions. But we also recently made updates to our early start eligibility, and that was in part because of some of the trends we're noticing with individuals with autism. So for one, only about half of the children we serve with autism ever participated in early intervention through our Early Start Program.

Even though we can diagnose autism as early as 14 months reliably. And most families are noting those concerns before the age of three, only half are getting flagged, referred and enrolled in early start. And that's something that we want to explore and improve. We also note some young toddlers with autism have unique language profiles where they may have pretty decent receptive language, but may be impaired in expressive language or vice versa.

And then when you look at communication as one domain, you have that one sort of combined or composite score. Those children might not meet the 33% delay, which is the criteria for early start. And so this past year, we updated our early start criteria, splitting that communication domain into two categories, receptive and expressive language, which should more easily capture some of those children on the spectrum and with other disabilities who may only have impairment in one of those domains.

And we also reduce the delay to 25%, which is also going to increase the number of children we're capturing. So in general, this proposal is going to establish an autism services branch within our office of statewide clinical services at the department to really put incredible focus on this population, the growth we're seeing, and to take a look at services and supports across the lifespan to get to the questions from the agenda.

One we believe that the work of this branch should be informed by the population that it serves. So the branch staffing would directly support community engagement with individuals on the autism spectrum. So we have begun recruiting for a focus group of individuals who are autistic, who are served by Regional Centers who will be bringing new voices to the work that we're doing.

But this branch will also be doing significant community engagement with others who are on the spectrum, as well as their family members, some of our providers, and other experts. We also will be doing work around identifying and reviewing evidence based practices and other innovative models that we could be supporting across the state. So the branch itself would be doing some of that exploration, reviewing different models, scientific studies, but also consulting with other experts. So in California, we're very lucky.

We have three university centers of excellence in developmental disabilities, also called UCED, at UC Davis Mind Institute, UCLA's Tarjan Center, and then at the University of Southern California in collaboration with the Children's Hospital of LA. We also have two NIH funded autism centers of excellence that are housed at UC Davis and also UC San Diego. And then we also have several other universities that have world leading experts in autism.

And our department is very lucky that we have maintained partnerships with those experts and are able to consult with them on issues and supports around autism. We also have some incredible clinicians who work at the Regional Centers who participate in the ARCA psychology collaborative, who we collaborate with. And then, like I mentioned, we'll be gathering information from our stakeholders as well to inform the work. And then our last question how will we know the branch is successful?

I think immediately or in the short term, the completion of the outcomes that we mentioned in the proposal. So launching the resource hub, delivering trainings, publishing and updated clinical guidelines for screening and diagnosing autism, convening our stakeholder groups, and then also increasing our responsibility to families and tracking those communications will be our first steps.

But in the long term, we believe the branch is going to impact individuals with autism and their families, not only through the increased responsivity to those families, but also through enhanced research, data collection, community engagement. All of that is going to help the department identify recommendations and strategies that should increase access to effective and person centered services for individuals on the spectrum so that they can lead independent and productive lives in the community and across their lifespan. Thank you.

Thank you. I'd like to turn it to LAO and DOF for any comments.

Chris Odneal, Department of Finance nothing further to add at this.

I think how important it is to me has been made obvious already in this topic. The only thing I would add is that we've talked about the troubling and getting data with the new department. We have a great opportunity to start from the get go and collecting that data. Senator Roth, any question fair? We're going to hold the item open and move on to issue number seven. Disparities within the Developmental Services System related to AB 1957.

Okay. For our new guests at the table, let me have you introduce yourselves. We'll start with to my left, ma'am.

Carla Castañeda, Department of Developmental Services.

It's very good to see you.

Pete Cervinka, chief for data analytics and strategy at the department.

Mr. Cervinka, thank you for joining us. Who wants to start?

I'll go ahead, if that's all right with you.

All right.

Perfect.