(1)Existing law, the Lanterman Developmental Disabilities Services Act (act), requires the State Department of Developmental Services to contract with regional centers to provide services and supports to individuals with developmental disabilities and their families. Under existing law, the regional centers purchase needed services and supports for individuals with developmental disabilities through approved service providers, or arrange for their provision through other publicly funded agencies. The services and supports to be provided to a regional center consumer are contained in an individual program plan (IPP), which is developed by the planning team according to specified procedures. Existing law requires the planning process for the IPP to include various components and guidelines, such as a statement of goals, based on the needs, preferences, and life choices of the individual with developmental disabilities, a review of the general health status of the individual, and a transportation access plan, as specified.

This bill additionally would require the IPP planning process to include, when a regional center consumer is being cared for in the family home, no later than the consumers 22nd birthday, and annually thereafter, a discussion regarding caregiver succession and, under specified circumstances, development of a caregiver succession plan, as specified. The bill would define caregiver succession as the transition between one caregiver and the caregiver that assumes responsibility to care for a regional center consumer.

(2)Existing law requires the department and regional centers to provide specified supported living services for individuals with developmental disabilities and their families. Existing law lists the range of supported living services and supports to include, among other things, recruiting, training, and hiring individuals to provide personal care and other assistance. Existing law also authorizes regional centers to make rent, mortgage, or lease payments under specified circumstances, including when the regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumer, as specified, and is required when a consumers demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.

This bill would additionally authorize a regional center to make rent, mortgage, or lease payments or pay for household expenses when the executive director certifies in writing that the consumers demonstrated risk of homelessness presents a health and safety risk to the consumer or another.

(1)Existing law, the Lanterman Developmental Disabilities Services Act (act), requires the State Department of Developmental Services to contract with regional centers to provide services and supports to individuals with developmental disabilities and their families. Under existing law, the regional centers purchase needed services and supports for individuals with developmental disabilities through approved service providers, or arrange for their provision through other publicly funded agencies. The services and supports to be provided to a regional center consumer are contained in an individual program plan (IPP), which is developed by the planning team according to specified procedures. Existing law requires the planning process for the IPP to include various components and guidelines, such as a statement of goals, based on the needs, preferences, and life choices of the individual with developmental disabilities, a review of the general health status of the individual, and a transportation access plan, as specified.

This bill additionally would require the IPP planning process to include, when a regional center consumer is being cared for in the family home, no later than the consumers 22nd birthday, and annually thereafter, a discussion regarding caregiver succession and, under specified circumstances, development of a caregiver succession plan, as specified. The bill would define caregiver succession as the transition between one caregiver and the caregiver that assumes responsibility to care for a regional center consumer.

(2)Existing law requires the department and regional centers to provide specified supported living services for individuals with developmental disabilities and their families. Existing law lists the range of supported living services and supports to include, among other things, recruiting, training, and hiring individuals to provide personal care and other assistance. Existing law also authorizes regional centers to make rent, mortgage, or lease payments under specified circumstances, including when the regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumer, as specified, and is required when a consumers demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.

This bill would additionally authorize a regional center to make rent, mortgage, or lease payments or pay for household expenses when the executive director certifies in writing that the consumers demonstrated risk of homelessness presents a health and safety risk to the consumer or another.

(1)Existing law, the Lanterman Developmental Disabilities Services Act (act), requires the State Department of Developmental Services to contract with regional centers to provide services and supports to individuals with developmental disabilities and their families. Under existing law, the regional centers purchase needed services and supports for individuals with developmental disabilities through approved service providers, or arrange for their provision through other publicly funded agencies. The services and supports to be provided to a regional center consumer are contained in an individual program plan (IPP), which is developed by the planning team according to specified procedures. Existing law requires the planning process for the IPP to include various components and guidelines, such as a statement of goals, based on the needs, preferences, and life choices of the individual with developmental disabilities, a review of the general health status of the individual, and a transportation access plan, as specified.

This bill additionally would require the IPP planning process to include, when a regional center consumer is being cared for in the family home, and no later than the consumers 22nd birthday, and annually thereafter, a discussion regarding caregiver succession and, under specified circumstances, development of a caregiver succession plan, as specified. The bill would define caregiver succession as the transition between one caregiver and the caregiver that assumes responsibility to care for a regional center consumer.

(2)Existing law requires the department and regional centers to provide specified supported living services for individuals with developmental disabilities and their families. Existing law lists the range of supported living services and supports to include, among other things, recruiting, training, and hiring individuals to provide personal care and other assistance. Existing law also authorizes regional centers to make rent, mortgage, or lease payments under specified circumstances, including when the regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumer, as specified, and is required when a consumers demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.

This bill would additionally authorize a regional center to make rent, mortgage, or lease payments or pay for household expenses when the executive director certifies in writing that the consumers demonstrated risk of homelessness presents a health and safety risk to the consumer or another.

(1)Existing law, the Lanterman Developmental Disabilities Services Act (act), requires the State Department of Developmental Services to contract with regional centers to provide services and supports to individuals with developmental disabilities and their families. Under existing law, the regional centers purchase needed services and supports for individuals with developmental disabilities through approved service providers, or arrange for their provision through other publicly funded agencies. The services and supports to be provided to a regional center consumer are contained in an individual program plan (IPP), which is developed by the planning team according to specified procedures. Existing law requires the planning process for the IPP to include various components and guidelines, such as a statement of goals, based on the needs, preferences, and life choices of the individual with developmental disabilities, a review of the general health status of the individual, and a transportation access plan, as specified.

This bill additionally would require the IPP planning process to include, when a regional center consumer is being cared for by a parent, in the family home, and no later than the consumers 22nd birthday, a discussion regarding caregiver succession and, if determined to be necessary, under specified circumstances, development of a caregiver succession plan, as specified. The bill would define caregiver succession as the transition between one caregiver and the caregiver that assumes responsibility to care for a regional center consumer.

(2)Existing law requires the department and regional centers to provide specified supported living services for individuals with developmental disabilities and their families. Existing law lists the range of supported living services and supports to include, among other things, recruiting, training, and hiring individuals to provide personal care and other assistance. Existing law also authorizes regional centers to make rent, mortgage, or lease payments under specified circumstances, including when the regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumer, as specified, and is required when a consumers demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.

This bill would additionally authorize a regional center to make rent, mortgage, or lease payments or pay for household expenses when the executive director certifies in writing that the consumers demonstrated risk of homelessness presents a health and safety risk to the consumer or another.

(1)Existing law, the Lanterman Developmental Disabilities Services Act (act), requires the State Department of Developmental Services to contract with regional centers to provide services and supports to individuals with developmental disabilities and their families. Under existing law, the regional centers purchase needed services and supports for individuals with developmental disabilities through approved service providers, or arrange for their provision through other publicly funded agencies. The services and supports to be provided to a regional center consumer are contained in an individual program plan (IPP), which is developed by the planning team according to specified procedures. Existing law requires the planning process for the IPP to include various components and guidelines, such as a statement of goals, based on the needs, preferences, and life choices of the individual with developmental disabilities, a review of the general health status of the individual, and a transportation access plan, as specified.

This bill additionally would require the IPP planning process to include, when a regional center consumer is being cared for by a parent, a discussion regarding caregiver succession and, if determined to be necessary, development of a caregiver succession plan, as specified. The bill would define caregiver succession as the transition between one caregiver and the caregiver that assumes responsibility to care for a regional center consumer.

(2)Existing law requires the department and regional centers to provide specified supported living services for individuals with developmental disabilities and their families. Existing law lists the range of supported living services and supports to include, among other things, recruiting, training, and hiring individuals to provide personal care and other assistance. Existing law also authorizes regional centers to make rent, mortgage, or lease payments under specified circumstances, including when the regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumer, as specified, and is required when a consumers demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.

This bill would additionally authorize a regional center to make rent, mortgage, or lease payments or pay for household expenses when the executive director certifies in writing that the consumers demonstrated risk of homelessness presents a health and safety risk to the consumer or another.

(3)Existing law authorizes the removal of a child from the custody of a parent or guardian under specified conditions, including the neglect or abuse of that child or the finding by the juvenile court that the minor is a dependent child of the court. Existing law requires that, regardless of the person or persons currently holding the right to make educational decisions for the child, a foster parent, relative caregiver, nonrelated extended family member, or resource family will retain rights and obligations regarding accessing and maintaining health and education information for the child.

This bill would require, regardless of the person or persons currently holding the right to make educational decisions for the child, the court to ensure that the educational rights holder has provided authorizations required for the commencement of regional center services.

CONCURRENCE IN SENATE AMENDMENTS

CSA1 Bill Id:AB 3291

Author:(Committee on Human Services)

As Amended Ver:August 21, 2024

Majority vote

SUMMARY

Updates regional center requirements regarding the planning process for the individual program plan (IPP).

Senate Amendments

1. Make technical changes as requested by the Department of Developmental Services (DDS).
2. Add the succession planning should take place annually after established.

COMMENTS

Background: Individual Program Plans. IPPs are developed by a series of planning discussions and interactions with the IPP team—including, among other individuals, the consumer, their legally authorized representative, and one or more regional center representatives—and is based on the consumer's needs and choices. IPP meetings are designed to help people with developmental disabilities outline in a person-centered manner, a "preferred future", by identifying a preferred place to live, favorite people with whom to socialize, and preferred types of daily activities, including preferred jobs.

As required by the Lanterman Developmental Disabilities Act (Act), the IPP promotes community integration and maximizes opportunities for each consumer to develop relationships, be part of community life, increase control over their life, and acquire increasingly positive roles in the community. The IPP must give the highest preference to those services and supports that allow minors to live with their families and adults to live as independently as possible in the community. The recommendations set forth in each IPP are the foundation for each individual's care as it guides services received, eligibility for services, and can help assist in the quality of life for that individual.

Regional Centers' Responsibilities. Direct responsibility for implementation of the Act's service system is shared by DDS and a statewide network of 21 private regional centers, and community-based nonprofit entities, established pursuant to the Act, that contract with DDS to carry out many of the state's responsibilities. Regional centers are governed by a board of directors (Board) who are a part of the community, receive services, or a representatives of someone who receives services from the regional center. The Board is responsible for hiring (and firing) the executive director who is tasked with the day-to-day management of the regional center. DDS establishes contracts with regional centers that include specific, measurable, performance objectives. Every year, DDS reviews each regional center's performance data for compliance with their contracts and posts them on their website.

Aging Caregiver Crisis. An increase in the aging population hits the intellectual/developmental disabilities community particularly hard. Those living with intellectual/developmental disabilities are living longer than ever before due to medical advancements, which in turn means they are living past the ability for their caregivers, who are likely parents, to provide safe and proper care.

The life expectancy for people with intellectual/developmental disabilities is now similar to the general population, ranging from the late-50s to the mid 70s, depending on the severity of the disability. (Bittles et al., The Influence Of Intellectual Disability On Life Expectancy. 2002) In California, there are currently about 47,058 individuals with developmental disabilities with caregivers who over 60 years of age (California Policy Center for Intellectual and Developmental Disabilities, 2024).

In the United States, the population of adults with intellectual/developmental disabilities over the age of 60 will nearly double from 640,000 in 2010 to 1.2 million in 2030 (Heller, Tamar. People with Intellectual and Developmental Disabilities Growing Old).

These individuals need a plan moving forward to prevent homelessness or being forced to enter into a housing situation that is not of their choosing.

The Alta California Regional Center launched a Coordinated Future Planning Taskforce with this looming problem in mind. The initiative calls on a group of stakeholders: clients, family members, advocates, and service providers to join with regional center staff in both developing and delivering training to service coordinators. This training focuses on the need for caregiver succession plans for each regional center client, as well as seeking to increase the competencies of service coordinators in discussing a range of living options at IPP meetings. The training has four learning objectives:

1. Recognize the benefit of reflecting on your own beliefs about dying and end of life care and the impact that may have on your ability to help others with future life planning.
2. Dialogue with clients and families, in a culturally respectful, sensitive and humble way, regarding caregiver succession planning using appropriate language.
3. Articulate the benefit to clients and families of early planning for caregiver succession.
4. Describe a range of living options, including independent living, supported living, family home agencies, and residential care, to clients and their families.
   1. Create a person-centered IPP narrative that captures the wishes of the client and planning team in relation to future living options.
5. Share future planning tools that can assist clients and families related to accessing affordable housing, power-of-attorney, special needs trust, CalABLE, conservatorship, and end-of-life care decisions.

This bill aligns with Alta's efforts by making caregiver succession planning a part of the IPP process for all 21 regional centers.

Homelessness Within the Disabled Community. The longstanding goal for establishing care for individuals living with disabilities is to be "person-centered." Meaning, that throughout planning for day-to-day services and supports the individual is centered in decision-making on how they like to live and what supports are required to meet the needs of the individual in the living option of their choice. Currently, adult regional center consumers have several different living options including their own family homes; adult residential facilities for persons with special health care needs; community care facilities; family home agencies; independent living programs; intermediate care facilities; and state-operated developmental centers and community facilities. While there are institutional settings, these are not always the setting of choice, but rather the only option. According to the National Core Indicators data, 52% of adults with intellectual and developmental disabilities have no choice or input regarding where they live, and 62% have no choice as to who they live with. Choices are often limited due to financial constraints.

People with disabilities experience disproportionate rates of poverty and an even higher rate of disproportionality for those with a disability among communities of color. People with disabilities are the most likely population to experience homelessness, be rent-burdened or unable to afford housing, and face the highest rates of housing discrimination. This is due to most of these individuals living on fixed incomes that are at or near poverty-level thresholds and the increased need for ADA-compliant homes.

Although generally accepted as an undercount due to challenges with identifying developmental disabilities among the homeless population, over 1,200 individuals with developmental disabilities have been identified as experiencing homelessness, and another 24,000 regional center consumers who are likely to experience being rent-burdened or seriously rent-burdened (California Policy Center for Intellectual and Developmental Disabilities, 2024).

This bill seeks to ensure individuals with developmental disabilities are getting the necessary future planning and housing support to prevent homelessness. Future planning is essential to ensuring more individuals do not face homelessness or housing insecurity. According to a February 2024 report released by the California Policy Center for Intellectual and Developmental Disabilities, "The larger housing issue facing the [Intellectual and Developmental Disabilities] community is the lack of affordable and accessible housing. The vast majority of adults with [Intellectual and Developmental Disabilities] who live in [Independent Living Services] or [Supportive Living Services] are rent burdened or severely rent burdened which places them at greater risk of housing instability or homelessness. At least 50% of adults with [Intellectual and Developmental Disabilities] live with a family member or in the family home, and of those living in the family home up to 50% are highly likely to be living with an aging caregiver." This bill will help to start addressing these issues and allow for a better understanding of the depth of the need.

According to the Author

According to the Chair of the Assembly Committee on Human Services, "This bill proposes to take a preventive approach, enabling independent living service consumers to use their regional center benefits for housing assistance, as well as allowing individuals to plan for their future when their caregiver can no longer assist in care and/or provide housing."

Arguments in Support

According to the California Community Living Network, "The current statutory factors limit access to necessary services that are consistent with an individual's Individual Program Plan and essential to promoting independence for individuals with intellectual or developmental disabilities. Requiring an individual in need of personal supports to be in a medical or behavioral health crisis before a Regional Center may authorize housing assistance is inconsistent with best practices, the goals of the developmental services system, and the values of the state of California. Additionally, an individual's inability to afford rent, mortgage, or lease payment increases disparities in service equity and access to Supported Living Services."

According to Easterseals Northern California "[This bill] seeks to establish a requirement within the Individual Program Plan (IPP) of an individual with I/DD consuming regional center services to include a discussion on caregiver succession. This discussion is an essential need for any household with individuals with developmental disabilities. It will help mitigate the significant worry and anxiety that parents or caregivers have about their disabled family member - of who will care for the individual as the caregiver ages, or if they fall ill or pass away. This bill ensures the occurrence of the pre-planning necessary to not only avoid such worry, but also protect the individual with I/DD from being left uncared for in case the present caregiver becomes incapacitated. Furthermore, [this bill] also ensures stable housing for persons with I/DD, which is crucial to their wellbeing, by authorizing the regional center to pay for household expenses in certain times of need."

Arguments in Opposition

No opposition on file.

FISCAL COMMENTS

According to the Senate Appropriations Committee on August 5, 2024, the Department of Developmental Services (DDS) anticipates unknown and potentially significant General Fund costs in the millions of dollars to local assistance for regional centers costs related to housing assistance payments. DDS anticipates no fiscal impact to update IPP templates related to caregiver succession planning since DDS is currently in the process of modifying the IPP template to contain a caregiver succession planning section.

VOTES:

ASM HUMAN SERVICES: 6-0-1

YES: Lee, Essayli, Calderon, Gipson, Jackson, Ortega

ABS, ABST OR NV: Mathis

ASM APPROPRIATIONS: 15-0-0

YES: Wicks, Sanchez, Arambula, Bryan, Calderon, Wendy Carrillo, Dixon, Mike Fong, Grayson, Haney, Hart, Jim Patterson, Pellerin, Ta, Villapudua

ASSEMBLY FLOOR: 71-0-9

YES: Addis, Aguiar-Curry, Alanis, Alvarez, Arambula, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Juan Carrillo, Wendy Carrillo, Chen, Connolly, Davies, Dixon, Flora, Mike Fong, Vince Fong, Gabriel, Gallagher, Garcia, Gipson, Grayson, Haney, Hart, Hoover, Irwin, Jackson, Jones-Sawyer, Kalra, Lackey, Lee, Low, Lowenthal, Maienschein, McCarty, McKinnor, Muratsuchi, Stephanie Nguyen, Ortega, Pacheco, Papan, Jim Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Rendon, Reyes, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Weber, Wicks, Wilson, Wood, Zbur, Robert Rivas

ABS, ABST OR NV: Calderon, Cervantes, Megan Dahle, Essayli, Friedman, Holden, Mathis, Joe Patterson, Luz Rivas

SENATE FLOOR: 39-0-1

YES: Allen, Archuleta, Ashby, Atkins, Becker, Blakespear, Bradford, Caballero, Cortese, Dahle, Dodd, Durazo, Eggman, Glazer, Gonzalez, Grove, Hurtado, Jones, Laird, Limón, McGuire, Menjivar, Min, Newman, Nguyen, Niello, Ochoa Bogh, Padilla, Portantino, Roth, Rubio, Seyarto, Skinner, Smallwood-Cuevas, Stern, Umberg, Wahab, Wiener, Wilk

ABS, ABST OR NV: Alvarado-Gil

UPDATED

VERSION: August 21, 2024

CONSULTANT: Alexandria Smith / HUM. S. / (916) 319-2089 FN: 0004741

 THIRD READING  

Bill No: AB 3291

Author: Committee on Human Services

Amended: 8/21/24 in Senate

Vote: 21

SENATE HUMAN SERVICES COMMITTEE: 5-0, 7/1/24

AYES: Alvarado-Gil, Ochoa Bogh, Blakespear, Limón, Menjivar

SENATE APPROPRIATIONS COMMITTEE: 7-0, 8/15/24

AYES: Caballero, Jones, Ashby, Becker, Bradford, Seyarto, Wahab

ASSEMBLY FLOOR: 71-0, 5/22/24 - See last page for vote

SUBJECT: Developmental services

SOURCE: Author

DIGEST:

This bill required an individual program plan (IPP) process to include a discussion regarding caregiver succession for regional center consumers being cared for in the family home, and for this discussion to occur no later than the consumer’s 22^nd birthday, and annually thereafter. This bill adds risk of homelessness to the list of conditions under which the executive director of a regional center may make housing assistance payments for consumers receiving supported living services, including paying rent.

Senate Floor Amendments of 8/21/24 (1) specify that the discussion regarding caregiver succession required by this bill shall also occur annually after the initial discussion; and (2) add clarifying language that rent, mortgage, or lease payments may be paid “only” under certain circumstances.

ANALYSIS:

Existing law:

1. Establishes the Lanterman Developmental Disabilities Services Act (Lanterman Act), which states that California is responsible for providing a range of services and supports sufficiently complete to meet the needs and choices of each person with developmental disabilities, regardless of age or degree of disability, at each stage of life, and to support their integration into the mainstream life of the community. (WIC 4500, et seq.)
2. Establishes a system of nonprofit Regional Centers, overseen by the Department of Developmental Services (DDS), to provide fixed points of contact in the community for all persons with developmental disabilities and their families and to coordinate services and supports best suited to them throughout their lifetime. (WIC 4620)
3. Establishes the IPP as the process to ensure that services and supports are customized to meet the needs of consumers who are served by regional centers for the purpose of alleviating a developmental disability or toward the social, personal, physical, or economic habilitation or rehabilitation of an individual with a developmental disability, or toward the achievement and maintenance of independent, productive, and normal lives. (WIC 4512(b))
4. Requires decisions concerning the consumer’s goals, objectives, and services and supports included in their IPP to be made by agreement between the regional center representative and the consumer or, when appropriate, the consumer’s parents, legal guardian, conservator, or authorized representative, at the program plan meeting. (WIC 4646(d))
5. Requires the IPP planning processes to include:
   1. A statement of the individual’s goals and objectives, a schedule of the type and nature of services to be provided and other information and considerations, as specified;
   2. Review and modification, as necessary, by the regional center’s planning team no less frequently than every three years; and
   3. Statewide training and review of the IPP plan creation, as specified. (WIC 4646.5)
6. Defines “Supported Living Services” as consisting of any individually designed service or assessment of the need for service, which assists an individual consumer to:
   1. Live in their own home, with support available as often and for as long as it is needed.
   2. Make fundamental life decisions, while also supporting and facilitating the consumer in dealing with the consequences of those decisions; building critical and durable relationships with other individuals; choosing where and with whom to live; and controlling the character and appearance of the environment within their home. (17 California Code of Regulations [CCR] 58614(a))
7. Specifies that Supported Living Services are tailored to meet the consumer’s evolving needs and preferences for support without having to move from the home of their choice, and include specified services. (17 CCR 58614(b); 17 CCR 54349)
8. States the Legislature places a high priority on providing opportunities for adults with developmental disabilities, regardless of the degree of disability, to live in homes that they own or lease with support available as often and for as long as it is needed, when that is the preferred objective in the IPP. Requires specified procedures to be adopted. (WIC 4689)
9. Prohibits a regional center from making rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services, except under the following circumstances:
   1. If all of the following conditions are met, allows a regional center to make rent, mortgage, or lease payments as follows:
      1. The regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumers as set forth in an addendum to the consumer’s IPP, and is required when a consumer’s demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.
      2. During the time period that a regional center is making rent, mortgage, or lease payments, or paying for household expenses, requires the Supported Living Services vendor to assist the consumer in accessing all sources of generic and natural supports consistent with the needs of the consumer.
      3. Prohibits the regional center from making rent, mortgage, or lease payments on a supported living home or pay for household expenses for more than six months, unless the regional center finds that it is necessary to meet the individual consumer’s particular needs pursuant to the consumer’s IPP. Requires the regional center to review a finding of necessity on a quarterly basis and the regional center executive director to annually verify in an addendum to the consumer’s IPP that the requirements in (i) continue to be met.
   2. For a regional center that has been contributing to rent, mortgage, or lease payments or paying for household expenses prior to July 1, 2009, requires the regional center to determine if the conditions in (a) are met at the time of development, review, or modification of a consumer’s IPP. If the planning team determines that these contributions are no longer appropriate, permits a reasonable time for transition, not to exceed six months. (WIC 4689(i))

This bill:

1. Requires the planning process for the IPP to include, when a regional center consumer is being cared for in the family home, and no later than the consumer’s 22^nd birthday, and annually thereafter, a discussion regarding caregiver succession and, if determined by the consumer or the consumer’s representative to be necessary, development of a caregiver succession plan, which may include, but is not limited to, both of the following:
   1. Identification of individuals who may provide care to the consumer when the current caregiver is no longer able to perform the necessary tasks.
   2. Identification of possible housing options for the regional center consumer when the consumer can no longer live at home.
2. Defines “caregiver succession” as the point at which the primary caregiver is no longer able to fully care for a regional center consumer.
3. Adds risk of homelessness to the list of conditions under which the executive director of a regional center may make rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services.

Background

Lanterman Act. In 1969, the Lanterman Act established that individuals with developmental disabilities and their families have a right to receive the necessary supports and services required to live independently in the community. The Lanterman Act enumerates the rights of individuals with developmental disabilities, as well as the rights of their families, what services and supports are available to these individuals, and how regional centers and service providers work together to provide these supports and services. The term “developmental disability” is defined as a disability that originates before a person reaches 18 years of age, is expected to continue indefinitely, and is a significant disability for the individual. These disabilities include, among others: epilepsy, autism spectrum disorder, intellectual disability, and cerebral palsy.

In addition to establishing the rights of individuals, the Lanterman Act also created California’s regional center system, comprised of 21 nonprofit regional centers throughout the state whose primary purpose is to connect individuals with services in the community. Regional centers coordinate a robust array of services and supports for more than 329,000 individuals with developmental disabilities in California.

Individual Program Plan (IPP). Services for individuals with intellectual and developmental disabilities are outlined in an IPP, which is developed according to the needs and personal choices of the individual. The IPP is developed by an IPP team, which often includes the consumer, their legally authorized representative, and one or more regional center representative. The IPP serves as a tool to maximize the opportunities for each consumer to develop relationships, integrate into community life, increase control over their life, and obtain positive roles in the community. The IPP is required to prioritize the services and supports that allow minors to live with their families and adults to live in the community as independently as possible.

Aging Caregiver Crisis. Individuals living with intellectual or developmental disabilities are living longer than ever before due to medical advancements. As a result, many individuals with developmental disabilities are living past the ability for their caregivers, who are likely parents, to provide safe and proper care. The life expectancy for people with intellectual and developmental disabilities is now similar to the general population, ranging from the late-50s to the mid-70s, depending on the severity of the disability. According to the California Policy Center for Intellectual and Developmental Disabilities, there are currently about 47,058 individuals with developmental disabilities with caregivers who over 60 years old in California. Additionally, according to the California Policy Center for Intellectual and Developmental Disabilities, at least 50 percent of adults with intellectual or developmental disability live with a family member or in the family home, and of those, up to 50 percent are highly likely to be living with an aging caregiver. Regional center consumers living in their family home, who are likely being cared for by a family member, need a plan moving forward to avoid interruption of care and supports, as well as displacement from their homes.

The Alta California Regional Center launched a Coordinated Future Planning Taskforce with this looming problem in mind. The initiative calls on a group of stakeholders, including clients, family members, advocates, and service providers to join with regional center staff in both developing and delivering training to service coordinators focused on the need for caregiver succession plans for each consumer, as well as seeking to increase the competencies of service coordinators in discussing a range of living options at IPP meetings.

Homelessness within the Developmental Disability Community. The longstanding goal for establishing care for individuals living with disabilities is to be person-centered, meaning that, throughout planning for day-to-day services and supports, decision-making is focused on how the individual would like to live and what supports are required to meet their needs to live in the option of their choice. Currently, adult regional center consumers have several different living options including their own family homes, adult residential facilities for persons with special health care needs, community care facilities, family home agencies, independent living programs, intermediate care facilities, and state-operated developmental centers and community facilities.

Choice of living option is often limited due to financial constraints. According to the National Core Indicators data, 52 percent of adults with intellectual and developmental disabilities have no choice or input regarding where they live. Individuals with disabilities experience disproportionate rates of poverty, and this rate is even more disproportionate for those with a disability among communities of color. Individuals with disabilities are the most likely population to experience homelessness, be rent-burdened or unable to afford housing, and face the highest rates of housing discrimination. This is due to most of these individuals living on fixed incomes that are at or near poverty-level thresholds and the increased need for homes compliant with the Americans with Disabilities Act.

The California Policy Center for Intellectual and Developmental Disabilities published a report in January 2024 on homelessness and housing needs of adult regional center consumers. Based on regional center purchase of service data from 2021-22, the report estimated there were 675 consumers identified as being “homeless or transient”, of which 582 were adults (age 22 or older). The report additionally estimated that 24,000 regional center consumers are likely to be rent burdened or seriously rent burdened. DDS estimates there are approximately 350 consumers potentially at risk of homelessness.

This bill adds to existing executive director permissions the ability to make a rent, mortgage, or lease payment for a consumer who is determined to be at risk of homelessness. Due to differing definitions of homelessness and a lack of data on the number of consumers who are at risk of homelessness, it is uncertain how many additional consumers would be eligible for housing assistance payments.

Comments

This bill seeks to provide additional supports for regional center consumers by (1) ensuring consumers who live at home have a caregiver succession plan in place; and (2) providing the ability for a regional center executive director to provide housing assistance before a consumer becomes homeless. This bill aligns with Alta Regional Center’s efforts to incorporate caregiver succession discussions and planning into the IPP process.

Current law allows a regional center to provide rent, mortgage, or lease payment on a supported living home only if a consumer has a medical, behavioral, or psychiatric condition presenting a health and safety risk. This statute does not allow regional centers to consider the consumer’s housing instability or risk of homelessness in deciding to provide housing assistance. This bill would allow a regional center to provide housing assistance intervention, subject to action by a regional center executive director.

Related/Prior Legislation

AB 1876 (Jackson, 2024) eliminates the sunset date for IPP meetings to be held remotely, thus allowing remote meetings permanently. The bill was referred to the Senate Appropriations Committee with no further action.

AB 1957 (Wilson, Chapter 314, Statutes of 2022) added additional data points to the set of data that DDS and regional centers must report. These additional data mostly relate to services that were cut during the COVID-19 pandemic and recently restored, including social recreation, camping, educational services, and nonmedical therapies such as art, dance, and music. The bill also added untimely translations of an IPP in a threshold language to be included in the set of data.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: No

According to the Senate Appropriations Committee, “The DDS anticipates unknown and potentially significant General Fund costs in the millions of dollars to local assistance for regional centers costs related to housing assistance payments. DDS anticipates no fiscal impact to update IPP templates related to caregiver succession planning since DDS is currently in the process of modifying the IPP template to contain a caregiver succession planning section.”

SUPPORT: (Verified 8/15/24)

Association of Regional Center Agencies
California Community Living Network
California Disability Services Association
Easterseals Northern California
Scdd

OPPOSITION: (Verified 8/15/24)

None received

ASSEMBLY FLOOR: 71-0, 5/22/24

AYES: Addis, Aguiar-Curry, Alanis, Alvarez, Arambula, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Juan Carrillo, Wendy Carrillo, Chen, Connolly, Davies, Dixon, Flora, Mike Fong, Vince Fong, Gabriel, Gallagher, Garcia, Gipson, Grayson, Haney, Hart, Hoover, Irwin, Jackson, Jones-Sawyer, Kalra, Lackey, Lee, Low, Lowenthal, Maienschein, McCarty, McKinnor, Muratsuchi, Stephanie Nguyen, Ortega, Pacheco, Papan, Jim Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Rendon, Reyes, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Weber, Wicks, Wilson, Wood, Zbur, Robert Rivas

NO VOTE RECORDED: Calderon, Cervantes, Megan Dahle, Essayli, Friedman, Holden, Mathis, Joe Patterson, Luz Rivas

Prepared by: Diana Dominguez / HUMAN S. / (916) 651-1524

8/22/24 16:10:49

**** END ****

 THIRD READING  

Bill No: AB 3291

Author: Committee on Human Services

Amended: 4/16/24 in Assembly

Vote: 21

SENATE HUMAN SERVICES COMMITTEE: 5-0, 7/1/24

AYES: Alvarado-Gil, Ochoa Bogh, Blakespear, Limón, Menjivar

SENATE APPROPRIATIONS COMMITTEE: 7-0, 8/15/24

AYES: Caballero, Jones, Ashby, Becker, Bradford, Seyarto, Wahab

ASSEMBLY FLOOR: 71-0, 5/22/24 - See last page for vote

SUBJECT: Developmental services

SOURCE: Author

DIGEST:

This bill requires an individual program plan (IPP) process to include a discussion regarding caregiver succession for regional center consumers being cared for in the family home, and for this discussion to occur no later than the consumer’s 22^nd birthday. This bill adds risk of homelessness to the list of conditions under which the executive director of a regional center may make housing assistance payments for consumers receiving supported living services, including paying rent.

ANALYSIS:

Existing law:

1. Establishes the Lanterman Developmental Disabilities Services Act (Lanterman Act), which states that California is responsible for providing a range of services and supports sufficiently complete to meet the needs and choices of each person with developmental disabilities, regardless of age or degree of disability, at each stage of life, and to support their integration into the mainstream life of the community. (Welfare & Institutions (WIC) 4500, et seq.)
2. Establishes a system of nonprofit Regional Centers, overseen by the Department of Developmental Services (DDS), to provide fixed points of contact in the community for all persons with developmental disabilities and their families and to coordinate services and supports best suited to them throughout their lifetime. (WIC 4620)
3. Establishes the IPP as the process to ensure that services and supports are customized to meet the needs of consumers who are served by regional centers for the purpose of alleviating a developmental disability or toward the social, personal, physical, or economic habilitation or rehabilitation of an individual with a developmental disability, or toward the achievement and maintenance of independent, productive, and normal lives. (WIC 4512(b))
4. Requires decisions concerning the consumer’s goals, objectives, and services and supports included in their IPP to be made by agreement between the regional center representative and the consumer or, when appropriate, the consumer’s parents, legal guardian, conservator, or authorized representative, at the program plan meeting. (WIC 4646(d))
5. Requires the IPP planning processes to include:
   1. A statement of the individual’s goals and objectives, a schedule of the type and nature of services to be provided and other information and considerations, as specified;
   2. Review and modification, as necessary, by the regional center’s planning team no less frequently than every three years; and
   3. Statewide training and review of the IPP plan creation, as specified. (WIC 4646.5)
6. Defines “Supported Living Services” as consisting of any individually designed service or assessment of the need for service, which assists an individual consumer to:
   1. Live in their own home, with support available as often and for as long as it is needed.
   2. Make fundamental life decisions, while also supporting and facilitating the consumer in dealing with the consequences of those decisions; building critical and durable relationships with other individuals; choosing where and with whom to live; and controlling the character and appearance of the environment within their home. (17 California Code of Regulations [CCR] 58614(a))
7. Specifies that Supported Living Services are tailored to meet the consumer’s evolving needs and preferences for support without having to move from the home of their choice, and include specified services. (17 CCR 58614(b); 17 CCR 54349)
8. States the Legislature places a high priority on providing opportunities for adults with developmental disabilities, regardless of the degree of disability, to live in homes that they own or lease with support available as often and for as long as it is needed, when that is the preferred objective in the IPP. Requires specified procedures to be adopted. (WIC 4689)
9. Prohibits a regional center from making rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services, except under the following circumstances:
   1. If all of the following conditions are met, allows a regional center to make rent, mortgage, or lease payments as follows:
      1. The regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumers as set forth in an addendum to the consumer’s IPP, and is required when a consumer’s demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.
      2. During the time period that a regional center is making rent, mortgage, or lease payments, or paying for household expenses, requires the Supported Living Services vendor to assist the consumer in accessing all sources of generic and natural supports consistent with the needs of the consumer.
      3. Prohibits the regional center from making rent, mortgage, or lease payments on a supported living home or pay for household expenses for more than six months, unless the regional center finds that it is necessary to meet the individual consumer’s particular needs pursuant to the consumer’s IPP. Requires the regional center to review a finding of necessity on a quarterly basis and the regional center executive director to annually verify in an addendum to the consumer’s IPP that the requirements in (i) continue to be met.
   2. For a regional center that has been contributing to rent, mortgage, or lease payments or paying for household expenses prior to July 1, 2009, requires the regional center to determine if the conditions in (a) are met at the time of development, review, or modification of a consumer’s IPP. If the planning team determines that these contributions are no longer appropriate, permits a reasonable time for transition, not to exceed six months. (WIC 4689(i))

This bill:

1. Requires the planning process for the IPP to include, when a regional center consumer is being cared for in the family home, and no later than the consumer’s 22^nd birthday, a discussion regarding caregiver succession and, if determined by the consumer or the consumer’s representative to be necessary, development of a caregiver succession plan, which may include, but is not limited to, both of the following:
   1. Identification of individuals who may provide care to the consumer when the current caregiver is no longer able to perform the necessary tasks.
   2. Identification of possible housing options for the regional center consumer when the consumer can no longer live at home.
2. Defines “caregiver succession” as the point at which the primary caregiver is no longer able to fully care for a regional center consumer.
3. Adds risk of homelessness to the list of conditions under which the executive director of a regional center may make rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services.

Background

Lanterman Act. In 1969, the Lanterman Act established that individuals with developmental disabilities and their families have a right to receive the necessary supports and services required to live independently in the community. The Lanterman Act enumerates the rights of individuals with developmental disabilities, as well as the rights of their families, what services and supports are available to these individuals, and how regional centers and service providers work together to provide these supports and services. The term “developmental disability” is defined as a disability that originates before a person reaches 18 years of age, is expected to continue indefinitely, and is a significant disability for the individual. These disabilities include, among others: epilepsy, autism spectrum disorder, intellectual disability, and cerebral palsy.

In addition to establishing the rights of individuals, the Lanterman Act also created California’s regional center system, comprised of 21 nonprofit regional centers throughout the state whose primary purpose is to connect individuals with services in the community. Regional centers coordinate a robust array of services and supports for more than 329,000 individuals with developmental disabilities in California.

Individual Program Plan (IPP). Services for individuals with intellectual and developmental disabilities are outlined in an IPP, which is developed according to the needs and personal choices of the individual. The IPP is developed by an IPP team, which often includes the consumer, their legally authorized representative, and one or more regional center representative. The IPP serves as a tool to maximize the opportunities for each consumer to develop relationships, integrate into community life, increase control over their life, and obtain positive roles in the community. The IPP is required to prioritize the services and supports that allow minors to live with their families and adults to live in the community as independently as possible.

Aging Caregiver Crisis. Individuals living with intellectual or developmental disabilities are living longer than ever before due to medical advancements. As a result, many individuals with developmental disabilities are living past the ability for their caregivers, who are likely parents, to provide safe and proper care. The life expectancy for people with intellectual and developmental disabilities is now similar to the general population, ranging from the late-50s to the mid-70s, depending on the severity of the disability. According to the California Policy Center for Intellectual and Developmental Disabilities, there are currently about 47,058 individuals with developmental disabilities with caregivers who over 60 years old in California. Additionally, according to the California Policy Center for Intellectual and Developmental Disabilities, at least 50 percent of adults with intellectual or developmental disability live with a family member or in the family home, and of those, up to 50 percent are highly likely to be living with an aging caregiver. Regional center consumers living in their family home, who are likely being cared for by a family member, need a plan moving forward to avoid interruption of care and supports, as well as displacement from their homes.

The Alta California Regional Center launched a Coordinated Future Planning Taskforce with this looming problem in mind. The initiative calls on a group of stakeholders, including clients, family members, advocates, and service providers to join with regional center staff in both developing and delivering training to service coordinators focused on the need for caregiver succession plans for each consumer, as well as seeking to increase the competencies of service coordinators in discussing a range of living options at IPP meetings.

Homelessness within the Developmental Disability Community. The longstanding goal for establishing care for individuals living with disabilities is to be person-centered, meaning that, throughout planning for day-to-day services and supports, decision-making is focused on how the individual would like to live and what supports are required to meet their needs to live in the option of their choice. Currently, adult regional center consumers have several different living options including their own family homes, adult residential facilities for persons with special health care needs, community care facilities, family home agencies, independent living programs, intermediate care facilities, and state-operated developmental centers and community facilities.

Choice of living option is often limited due to financial constraints. According to the National Core Indicators data, 52 percent of adults with intellectual and developmental disabilities have no choice or input regarding where they live. Individuals with disabilities experience disproportionate rates of poverty, and this rate is even more disproportionate for those with a disability among communities of color. Individuals with disabilities are the most likely population to experience homelessness, be rent-burdened or unable to afford housing, and face the highest rates of housing discrimination. This is due to most of these individuals living on fixed incomes that are at or near poverty-level thresholds and the increased need for homes compliant with the Americans with Disabilities Act.

The California Policy Center for Intellectual and Developmental Disabilities published a report in January 2024 on homelessness and housing needs of adult regional center consumers. Based on regional center purchase of service data from 2021-22, the report estimated there were 675 consumers identified as being “homeless or transient”, of which 582 were adults (age 22 or older). The report additionally estimated that 24,000 regional center consumers are likely to be rent burdened or seriously rent burdened. DDS estimates there are approximately 350 consumers potentially at risk of homelessness.

This bill would add to existing executive director permissions the ability to make a rent, mortgage, or lease payment for a consumer who is determined to be at risk of homelessness. Due to differing definitions of homelessness and a lack of data on the number of consumers who are at risk of homelessness, it is uncertain how many additional consumers would be eligible for housing assistance payments.

Comments

This bill seeks to provide additional supports for regional center consumers by (1) ensuring consumers who live at home have a caregiver succession plan in place; and (2) providing the ability for a regional center executive director to provide housing assistance before a consumer becomes homeless.

This bill aligns with Alta Regional Center’s efforts to incorporate caregiver succession discussions and planning into the IPP process. As written, this bill requires a discussion regarding caregiver succession to occur prior to the 22^nd birthday of a consumer who lives at their family home. The author may wish to consider adding language to encourage additional discussions regarding caregiver succession occur at subsequent IPP meetings, such as every few years, to ensure that the topic of caregiver succession is revisited if a plan is not established or considered unnecessary in discussions prior to the consumer’s 22^nd birthday. This would encourage consumers living at home beyond the age of 22 and their families to continue to participate together in person-centered future planning.

Current law allows a regional center to provide rent, mortgage, or lease payment on a supported living home only if a consumer has a medical, behavioral, or psychiatric condition presenting a health and safety risk. This statute does not allow regional centers to consider the consumer’s housing instability or risk of homelessness in deciding to provide housing assistance. This bill allows a regional center to provide housing assistance intervention, subject to action by a regional center executive director.

Related/Prior Legislation

AB 1876 (Jackson, 2024) eliminates the sunset date for IPP meetings to be held remotely, thus allowing remote meetings permanently. AB 1876 was referred to the Senate Appropriations Committee with no further action.

AB 1957 (Wilson, Chapter 314, Statutes of 2022) added additional data points to the set of data that DDS and regional centers must report. These additional data mostly relate to services that were cut during the COVID-19 pandemic and recently restored, including social recreation, camping, educational services, and nonmedical therapies such as art, dance, and music. AB 1957 also added untimely translations of an IPP in a threshold language to be included in the set of data.

FISCAL EFFECT: Appropriation: No Fiscal Com.: Yes Local: No

According to the Senate Appropriations Committee, “The DDS anticipates unknown and potentially significant General Fund costs in the millions of dollars to local assistance for regional centers costs related to housing assistance payments. DDS anticipates no fiscal impact to update IPP templates related to caregiver succession planning since DDS is currently in the process of modifying the IPP template to contain a caregiver succession planning section.”

SUPPORT: (Verified 8/15/24)

Association of Regional Center Agencies
California Community Living Network
California Disability Services Association
California State Council on Developmental Disabilities

Easterseals Northern California

OPPOSITION: (Verified 8/15/24)

None received

ASSEMBLY FLOOR: 71-0, 5/22/24

AYES: Addis, Aguiar-Curry, Alanis, Alvarez, Arambula, Bains, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Juan Carrillo, Wendy Carrillo, Chen, Connolly, Davies, Dixon, Flora, Mike Fong, Vince Fong, Gabriel, Gallagher, Garcia, Gipson, Grayson, Haney, Hart, Hoover, Irwin, Jackson, Jones-Sawyer, Kalra, Lackey, Lee, Low, Lowenthal, Maienschein, McCarty, McKinnor, Muratsuchi, Stephanie Nguyen, Ortega, Pacheco, Papan, Jim Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Rendon, Reyes, Rodriguez, Blanca Rubio, Sanchez, Santiago, Schiavo, Soria, Ta, Ting, Valencia, Villapudua, Waldron, Wallis, Ward, Weber, Wicks, Wilson, Wood, Zbur, Robert Rivas

NO VOTE RECORDED: Calderon, Cervantes, Megan Dahle, Essayli, Friedman, Holden, Mathis, Joe Patterson, Luz Rivas

Prepared by: Diana Dominguez / HUMAN S. / (916) 651-1524

8/18/24 17:50:36

**** END ****

SENATE COMMITTEE ON APPROPRIATIONS

Senator Anna Caballero, Chair

2023 - 2024 Regular Session

AB 3291 (Committee on Human Services) - Developmental services

Bill Summary:

AB 3291 would require an individual program plan (IPP) process to include a discussion regarding caregiver succession for regional center consumers being cared for in the family home; and would add risk of homelessness to the list of conditions under which a regional center may make housing assistance payments for consumers.

Fiscal Impact:

The Department of Developmental Services (DDS) anticipates unknown and potentially significant General Fund costs in the millions of dollars to local assistance for regional centers costs related to housing assistance payments. DDS anticipates no fiscal impact to update IPP templates related to caregiver succession planning since DDS is currently in the process of modifying the IPP template to contain a caregiver succession planning section.

Background:

In 1969, the Lanterman Act established that individuals with developmental disabilities and their families have a right to receive the necessary supports and services required to live independently in the community. The Lanterman Act enumerates the rights of individuals with developmental disabilities, as well as the rights of their families, what services and supports are available to these individuals, and how regional centers and service providers work together to provide these supports and services. The term “developmental disability” is defined as a disability that originates before a person reaches 18 years of age, is expected to continue indefinitely, and is a significant disability for the individual. These disabilities include, among others: epilepsy, autism spectrum disorder, intellectual disability, and cerebral palsy.

The Lanterman Act also created California’s regional center system, comprised of 21 nonprofit regional centers throughout the state whose primary purpose is to connect individuals with services in the community. Services for individuals with intellectual and developmental disabilities are outlined in an IPP, which is developed according to the needs and personal choices of the individual. The IPP is developed by an IPP team, which often includes the consumer, their legally authorized representative, and one or more regional center representative. The IPP serves as a tool to maximize the opportunities for each consumer to develop relationships, integrate into community life, increase control over their life, and obtain positive roles in the community. The IPP is required to prioritize the services and supports that allow minors to live with their families and adults to live in the community as independently as possible.

Current law prohibits a regional center from making rent, mortgage, or lease payments on a supported living home, or paying for household expenses of consumers receiving supported living services, unless the regional center executive director verifies in writing that making the payments or paying for household expenses is required to meet the specific care needs unique to the individual consumer as set forth in an addendum to the consumer’s IPP, and is required when a consumer’s demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to himself or herself, or another.

Proposed Law:

Specific provisions of the bill would:

• Require the planning process for an IPP to include, when a regional center consumer is being cared for in the family home, and no later than the consumer’s 22nd birthday, a discussion regarding caregiver succession and, if determined by the consumer or the consumer’s representative to be necessary, development of a caregiver succession plan, as specified.
• Additionally authorize a regional center to make rent, mortgage, or lease payments or pay for household expenses when the executive director certifies in writing that the consumer’s demonstrated risk of homelessness presents a health and safety risk to the consumer or another.

-- END --

SENATE COMMITTEE ON HUMAN SERVICES

Senator Alvarado-Gil, Chair

2023 - 2024 Regular

Subject: Developmental services

SUMMARY

This bill would require an individual program plan (IPP) process to include a discussion regarding caregiver succession for regional center consumers being cared for in the family home, and for this discussion to occur no later than the consumer’s 22^nd birthday. This bill would add risk of homelessness to the list of conditions under which the executive director of a regional center may make housing assistance payments for consumers receiving supported living services, including paying rent.

ABSTRACT

Existing Law:

1. Establishes the Lanterman Developmental Disabilities Services Act (Lanterman Act), which states that California is responsible for providing a range of services and supports sufficiently complete to meet the needs and choices of each person with developmental disabilities, regardless of age or degree of disability, at each stage of life, and to support their integration into the mainstream life of the community. (WIC 4500, et seq.)
2. Establishes a system of nonprofit Regional Centers, overseen by the Department of Developmental Services (DDS), to provide fixed points of contact in the community for all persons with developmental disabilities and their families and to coordinate services and supports best suited to them throughout their lifetime. (WIC 4620)
3. Establishes the IPP as the process to ensure that services and supports are customized to meet the needs of consumers who are served by regional centers for the purpose of alleviating a developmental disability or toward the social, personal, physical, or economic habilitation or rehabilitation of an individual with a developmental disability, or toward the achievement and maintenance of independent, productive, and normal lives. (WIC 4512(b))
4. Requires decisions concerning the consumer’s goals, objectives, and services and supports included in their IPP to be made by agreement between the regional center representative and the consumer or, when appropriate, the consumer’s parents, legal guardian, conservator, or authorized representative, at the program plan meeting. (WIC 4646(d))
5. Requires the IPP planning processes to include:
   1. A statement of the individual’s goals and objectives, a schedule of the type and nature of services to be provided and other information and considerations, as specified;
      
   2. Review and modification, as necessary, by the regional center’s planning team no less frequently than every three years; and
   3. Statewide training and review of the IPP plan creation, as specified. (WIC 4646.5)
6. Defines “Supported Living Services” as consisting of any individually designed service or assessment of the need for service, which assists an individual consumer to:
   1. Live in their own home, with support available as often and for as long as it is needed.
   2. Make fundamental life decisions, while also supporting and facilitating the consumer in dealing with the consequences of those decisions; building critical and durable relationships with other individuals; choosing where and with whom to live; and controlling the character and appearance of the environment within their home. (17 California Code of Regulations [CCR] 58614(a))
7. Specifies that Supported Living Services are tailored to meet the consumer’s evolving needs and preferences for support without having to move from the home of their choice, and include specified services. (17 CCR 58614(b); 17 CCR 54349)
8. States the Legislature places a high priority on providing opportunities for adults with developmental disabilities, regardless of the degree of disability, to live in homes that they own or lease with support available as often and for as long as it is needed, when that is the preferred objective in the IPP. Requires specified procedures to be adopted. (WIC 4689)
9. Prohibits a regional center from making rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services, except under the following circumstances:
   1. If all of the following conditions are met, allows a regional center to make rent, mortgage, or lease payments as follows:
      1. The regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumers as set forth in an addendum to the consumer’s IPP, and is required when a consumer’s demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another.
      2. During the time period that a regional center is making rent, mortgage, or lease payments, or paying for household expenses, requires the Supported Living Services vendor to assist the consumer in accessing all sources of generic and natural supports consistent with the needs of the consumer.
      3. Prohibits the regional center from making rent, mortgage, or lease payments on a supported living home or pay for household expenses for more than six months, unless the regional center finds that it is necessary to meet the individual consumer’s particular needs pursuant to the consumer’s IPP. Requires the regional center to review a finding of necessity on a quarterly basis and the regional center executive director to annually verify in an addendum to the consumer’s IPP that the requirements in (i) continue to be met.
   2. For a regional center that has been contributing to rent, mortgage, or lease payments or paying for household expenses prior to July 1, 2009, requires the regional center to determine if the conditions in (a) are met at the time of development, review, or modification of a consumer’s IPP. If the planning team determines that these contributions are no longer appropriate, permits a reasonable time for transition, not to exceed six months. (WIC 4689(i))

This Bill:

1. Requires the planning process for the IPP to include, when a regional center consumer is being cared for in the family home, and no later than the consumer’s 22^nd birthday, a discussion regarding caregiver succession and, if determined by the consumer or the consumer’s representative to be necessary, development of a caregiver succession plan, which may include, but is not limited to, both of the following:
   1. Identification of individuals who may provide care to the consumer when the current caregiver is no longer able to perform the necessary tasks.
   2. Identification of possible housing options for the regional center consumer when the consumer can no longer live at home.
2. Defines “caregiver succession” as the point at which the primary caregiver is no longer able to fully care for a regional center consumer.
3. Adds risk of homelessness to the list of conditions under which the executive director of a regional center may make rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services.

FISCAL IMPACT

According to the Assembly Appropriations Committee analysis,

1. “The Department of Developmental Services (DDS) anticipates unknown and potentially significant General Fund cost pressures, likely in the millions of dollars annually, to add ‘at risk of homelessness’ to the reasons a regional center may provide rent, lease, or mortgage payments and payments for household expenses for consumers receiving supported living services.

“DDS indicates there are approximately 350 such consumers potentially at risk of homelessness. According to the California Department of Housing and Community Development’s current Statewide Housing Plan, the average monthly fair market rent for a two-bedroom residence in California is $2,030. For context, if 300 consumers each received a $1,500 payment for six months, the annual cost would be $2.7 million.

1. “DDS anticipates negligible costs associated with succession planning. DDS indicates they are currently modifying the IPP template, which will contain a caregiver succession planning section, and plans to release the updated template to regional centers in mid-2024.

“According to the Legislative Analyst’s Office, the General Fund faces a structural deficit in the tens of billions of dollars over the next several fiscal years.”

BACKGROUND AND DISCUSSION

Purpose of the Bill:

According to the author, “This bill proposes to take a preventive approach, enabling independent living service consumers to use their regional center benefits for housing assistance, as well as allowing individuals to plan for their future when their caregiver can no longer assist in care and/or provide housing.”

Lanterman Act

In 1969, the Lanterman Act established that individuals with developmental disabilities and their families have a right to receive the necessary supports and services required to live independently in the community. The Lanterman Act enumerates the rights of individuals with developmental disabilities, as well as the rights of their families, what services and supports are available to these individuals, and how regional centers and service providers work together to provide these supports and services. The term “developmental disability” is defined as a disability that originates before a person reaches 18 years of age, is expected to continue indefinitely, and is a significant disability for the individual. These disabilities include, among others: epilepsy, autism spectrum disorder, intellectual disability, and cerebral palsy.

In addition to establishing the rights of individuals, the Lanterman Act also created California’s regional center system, comprised of 21 nonprofit regional centers throughout the state whose primary purpose is to connect individuals with services in the community. Regional centers coordinate a robust array of services and supports for more than 329,000 individuals with developmental disabilities in California.

Individual Program Plan (IPP)

Services for individuals with intellectual and developmental disabilities are outlined in an IPP, which is developed according to the needs and personal choices of the individual. The IPP is developed by an IPP team, which often includes the consumer, their legally authorized representative, and one or more regional center representative. The IPP serves as a tool to maximize the opportunities for each consumer to develop relationships, integrate into community life, increase control over their life, and obtain positive roles in the community. The IPP is required to prioritize the services and supports that allow minors to live with their families and adults to live in the community as independently as possible.

This bill would require, for consumers being cared for in the family home, the IPP planning process to include, no later than the consumer’s 22^nd birthday, a discussion regarding caregiver succession and development of a caregiver succession plan, if determined to be necessary.

Aging Caregiver Crisis

Individuals living with intellectual or developmental disabilities are living longer than ever before due to medical advancements. As a result, many individuals with developmental disabilities are living past the ability for their caregivers, who are likely parents, to provide safe and proper care. The life expectancy for people with intellectual and developmental disabilities is now similar to the general population, ranging from the late-50s to the mid-70s, depending on the severity of the disability^[1]. According to the California Policy Center for Intellectual and Developmental Disabilities, there are currently about 47,058 individuals with developmental disabilities with caregivers who over 60 years old in California. Additionally, according to the California Policy Center for Intellectual and Developmental Disabilities, at least 50 percent of adults with intellectual or developmental disability live with a family member or in the family home, and of those, up to 50 percent are highly likely to be living with an aging caregiver^[2]. Regional center consumers living in their family home, who are likely being cared for by a family member, need a plan moving forward to avoid interruption of care and supports, as well as displacement from their homes.

The Alta California Regional Center launched a Coordinated Future Planning Taskforce with this looming problem in mind. The initiative calls on a group of stakeholders, including clients, family members, advocates, and service providers to join with regional center staff in both developing and delivering training to service coordinators focused on the need for caregiver succession plans for each consumer, as well as seeking to increase the competencies of service coordinators in discussing a range of living options at IPP meetings.

Homelessness within the Developmental Disability Community

The longstanding goal for establishing care for individuals living with disabilities is to be person-centered, meaning that, throughout planning for day-to-day services and supports, decision-making is focused on how the individual would like to live and what supports are required to meet their needs to live in the option of their choice. Currently, adult regional center consumers have several different living options including their own family homes, adult residential facilities for persons with special health care needs, community care facilities, family home agencies, independent living programs, intermediate care facilities, and state-operated developmental centers and community facilities.

Choice of living option is often limited due to financial constraints. According to the National Core Indicators data, 52 percent of adults with intellectual and developmental disabilities have no choice or input regarding where they live. Individuals with disabilities experience disproportionate rates of poverty, and this rate is even more disproportionate for those with a disability among communities of color. Individuals with disabilities are the most likely population to experience homelessness, be rent-burdened or unable to afford housing, and face the highest rates of housing discrimination. This is due to most of these individuals living on fixed incomes that are at or near poverty-level thresholds and the increased need for homes compliant with the Americans with Disabilities Act.

The California Policy Center for Intellectual and Developmental Disabilities published a report^[3] in January 2024 on homelessness and housing needs of adult regional center consumers. Based on regional center purchase of service data from 2021-22, the report estimated there were 675 consumers identified as being “homeless or transient”, of which 582 were adults (age 22 or older). The report additionally estimated that 24,000 regional center consumers are likely to be rent burdened or seriously rent burdened. DDS estimates there are approximately 350 consumers potentially at risk of homelessness.

This bill would add to existing executive director permissions the ability to make a rent, mortgage, or lease payment for a consumer who is determined to be at risk of homelessness. Due to differing definitions of homelessness and a lack of data on the number of consumers who are at risk of homelessness, it is uncertain how many additional consumers would be eligible for housing assistance payments.

Related/Prior Legislation:

AB 1876 (Jackson, 2024) would eliminate the sunset date for IPP meetings to be held remotely, thus allowing remote meetings permanently. AB 1876 is set to be heard in the Senate Judiciary Committee on July 2, 2024.

AB 1957 (Wilson, Chapter 314, Statutes of 2022) added additional data points to the set of data that DDS and regional centers must report. These additional data mostly relate to services that were cut during the COVID-19 pandemic and recently restored, including social recreation, camping, educational services, and nonmedical therapies such as art, dance, and music. AB 1957 also added untimely translations of an IPP in a threshold language to be included in the set of data.

COMMENTS

This bill seeks to provide additional supports for regional center consumers by (1) ensuring consumers who live at home have a caregiver succession plan in place, and (2) providing the ability for a regional center executive director to provide housing assistance before a consumer becomes homeless.

This bill aligns with Alta Regional Center’s efforts to incorporate caregiver succession discussions and planning into the IPP process. As written, the bill requires a discussion regarding caregiver succession to occur prior to the 22^nd birthday of a consumer who lives at their family home. The author may wish to consider adding language to encourage additional discussions regarding caregiver succession occur at subsequent IPP meetings, such as every few years, to ensure that the topic of caregiver succession is revisited if a plan is not established or considered unnecessary in discussions prior to the consumer’s 22^nd birthday. This would encourage consumers living at home beyond the age of 22 and their families to continue to participate together in person-centered future planning.

Current law allows a regional center to provide rent, mortgage, or lease payment on a supported living home only if a consumer has a medical, behavioral, or psychiatric condition presenting a health and safety risk. This statute does not allow regional centers to consider the consumer’s housing instability or risk of homelessness in deciding to provide housing assistance. This bill would allow a regional center to provide housing assistance intervention, subject to action by a regional center executive director.

PRIOR VOTES

POSITIONS

Support:

Association of Regional Center Agencies
California Community Living Network
California Disability Services Association
Easterseals Northern California
Scdd

Oppose:

None

-- END --

1. https://pubmed.ncbi.nlm.nih.gov/12084811/ ↑

2. https://www.cpcidd.org/wp-content/uploads/2024/02/CPCIDD_HousingReportJanuary2024_Final.pdf ↑

3. https://www.cpcidd.org/wp-content/uploads/2024/02/CPCIDD_HousingReportJanuary2024_Final.pdf ↑

vASSEMBLY THIRD READING

ATR Bill Id:AB 3291

Author:(Committee on Human Services)

As Amended Ver:April 16, 2024

Majority vote

SUMMARY

Updates regional center requirements regarding the planning process for the individual program plan (IPP).

Major Provisions

1. Requires, when a regional center consumer is being cared for in the family home, and no later than the consumer's 22nd birthday, a discussion regarding caregiver succession and, if determined by the consumer or the consumer’s representative to be necessary, development of a caregiver succession plan, which may include, but is not limited to, both of the following:
2. Identification of individuals who may provide care to the consumer when the current caregiver is no longer able to perform the necessary tasks; and,
3. Identification of possible housing options for the regional center consumer when the consumer can no longer live at home.
4. Defines for the purpose of 1) above "caregiver succession" to mean the point at which the primary caregiver is no longer able to fully care for a regional center consumer.
5. Permits regional centers to make rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services, except services under specified circumstances.
6. Adds "risk of homelessness" to the list of circumstances when a regional center may help with housing costs as described in 3) above.

COMMENTS

Background: Individual Program Plans. IPPs are developed by a series of planning discussions and interactions with the IPP team—including, among other individuals, the consumer, their legally authorized representative, and one or more regional center representatives—and is based on the consumer's needs and choices. IPP meetings are designed to help people with developmental disabilities outline in a person-centered manner a "preferred future" by identifying a preferred place to live, favorite people with whom to socialize, and preferred types of daily activities, including preferred jobs.

As required by the Act, the IPP promotes community integration and maximizes opportunities for each consumer to develop relationships, be part of community life, increase control over their life, and acquire increasingly positive roles in the community. The IPP must give the highest preference to those services and supports that allow minors to live with their families and adults to live as independently as possible in the community. The recommendations set forth in each IPP are the foundation for each individual's care as it guides services received, eligibility for services, and can help assist in the quality of life for that individual.

Regional Centers' Responsibilities. Direct responsibility for implementation of the Act's service system is shared by the Department of Developmental Disabilities (DDS) and a statewide network of 21 private regional centers, and community-based nonprofit entities, established pursuant to the Act, that contract with DDS to carry out many of the state's responsibilities. Regional centers are governed by a Board of Directors (Board) who are a part of the community, receive services, or a representatives of someone who receives services from the regional center. The Board is responsible for hiring (and firing) the Executive Director who is tasked with the day-to-day management of the regional center. DDS establishes contracts with regional centers that include specific, measurable, performance objectives. Every year, DDS reviews each regional center's performance data for compliance with their contracts and posts them on their website.

Aging Caregiver Crisis. An increase in the aging population hits the intellectual/developmental disabilities community particularly hard. Those living with intellectual/developmental disabilities are living longer than ever before due to medical advancements, which in turn means they are living past the ability for their caregivers, who are likely parents, to provide safe and proper care.

The life expectancy for people with intellectual/developmental disabilities is now similar to the general population, ranging from the late-50s to the mid 70s, depending on the severity of the disability. (Bittles et al., The Influence Of Intellectual Disability On Life Expectancy. 2002) In California, there are currently about 47,058 individuals with developmental disabilities with caregivers who over 60 years of age (California Policy Center for Intellectual and Developmental Disabilities, 2024).

In the U.S., the population of adults with intellectual/developmental disabilities over the age of 60 will nearly double from 640,000 in 2010 to 1.2 million in 2030 (Heller, Tamar. People with Intellectual and Developmental Disabilities Growing Old).

These individuals need a plan moving forward to prevent homelessness or being forced to enter into a housing situation that is not of their choosing.

The Alta California Regional Center launched a Coordinated Future Planning Taskforce with this looming problem in mind. The initiative calls on a group of stakeholders: clients, family members, advocates, and service providers to join with regional center staff in both developing and delivering training to service coordinators. This training focuses on the need for caregiver succession plans for each regional center client, as well as seeking to increase the competencies of service coordinators in discussing a range of living options at IPP meetings. The training has four learning objectives:

1. Recognize the benefit of reflecting on your own beliefs about dying and end of life care and the impact that may have on your ability to help others with future life planning.
   1. Dialogue with clients and families, in a culturally respectful, sensitive and humble way, regarding caregiver succession planning using appropriate language.
2. Articulate the benefit to clients and families of early planning for caregiver succession.
3. Describe a range of living options, including independent living, supported living, family home agencies, and residential care, to clients and their families.
   1. Create a person-centered IPP narrative that captures the wishes of the client and planning team in relation to future living options.
4. Share future planning tools that can assist clients and families related to accessing affordable housing, power-of-attorney, special needs trust, CalABLE, conservatorship, and end-of-life care decisions.

This bill aligns with Alta's efforts by making caregiver succession planning a part of the IPP process for all 21 regional centers.

Homelessness Within the Disabled Community. The longstanding goal for establishing care for individuals living with disabilities is to be "person-centered." Meaning, that throughout planning for day-to-day services and supports the individual is centered in decision-making on how they like to live and what supports are required to meet the needs of the individual in the living option of their choice. Currently, adult regional center consumers have several different living options including their own family homes; adult residential facilities for persons with special health care needs; community care facilities; family home agencies; independent living programs; intermediate care facilities; and state-operated developmental centers and community facilities. While there are institutional settings, these are not always the setting of choice, but rather the only option. According to the National Core Indicators data, 52% of adults with intellectual and developmental disabilities have no choice or input regarding where they live, and 62% have no choice as to who they live with. Choices are often limited due to financial constraints.

People with disabilities experience disproportionate rates of poverty and an even higher rate of disproportionality for those with a disability among communities of color. People with disabilities are the most likely population to experience homelessness, be rent-burdened or unable to afford housing, and face the highest rates of housing discrimination. This is due to most of these individuals living on fixed incomes that are at or near poverty-level thresholds and the increased need for ADA-compliant homes.

Although generally accepted as an undercount due to challenges with identifying developmental disabilities among the homeless population, over 1,200 individuals with developmental disabilities have been identified as experiencing homelessness, and another 24,000 regional center consumers who are likely to experience being rent-burdened or seriously rent-burdened (California Policy Center for Intellectual and Developmental Disabilities, 2024).

This bill seeks to ensure individuals with developmental disabilities are getting the necessary future planning and housing support to prevent homelessness. Future planning is essential to ensuring more individuals do not face homelessness or housing insecurity. According to a February 2024 report released by the California Policy Center for Intellectual and Developmental Disabilities, "The larger housing issue facing the [Intellectual and Developmental Disabilities] community is the lack of affordable and accessible housing. The vast majority of adults with [Intellectual and Developmental Disabilities] who live in [Independent Living Services] or [Supportive Living Services] are rent burdened or severely rent burdened which places them at greater risk of housing instability or homelessness. At least 50% of adults with [Intellectual and Developmental Disabilities] live with a family member or in the family home, and of those living in the family home up to 50% are highly likely to be living with an aging caregiver." This bill will help to start addressing these issues and allow for a better understanding of the depth of the need.

According to the Author

According to the Chair of the Committee on Human Services, "This bill proposes to take a preventive approach, enabling independent living service consumers to use their regional center benefits for housing assistance, as well as allowing individuals to plan for their future when their caregiver can no longer assist in care and/or provide housing."

Arguments in Support

According to the California Community Living Network, "The current statutory factors limit access to necessary services that are consistent with an individual's Individual Program Plan and essential to promoting independence for individuals with intellectual or developmental disabilities. Requiring an individual in need of personal supports to be in a medical or behavioral health crisis before a Regional Center may authorize housing assistance is inconsistent with best practices, the goals of the developmental services system, and the values of the state of California. Additionally, an individual's inability to afford rent, mortgage, or lease payment increases disparities in service equity and access to Supported Living Services."

According to Easterseals Northern California "[This bill] seeks to establish a requirement within the Individual Program Plan (IPP) of an individual with I/DD consuming regional center services to include a discussion on caregiver succession. This discussion is an essential need for any household with individuals with developmental disabilities. It will help mitigate the significant worry and anxiety that parents or caregivers have about their disabled family member - of who will care for the individual as the caregiver ages, or if they fall ill or pass away. This bill ensures the occurrence of the pre-planning necessary to not only avoid such worry, but also protect the individual with I/DD from being left uncared for in case the present caregiver becomes incapacitated. Furthermore, [this bill] also ensures stable housing for persons with I/DD, which is crucial to their wellbeing, by authorizing the regional center to pay for household expenses in certain times of need."

Arguments in Opposition

No opposition on file.

FISCAL COMMENTS

According to the Assembly Appropriations Committee on May 15, 2024:

1. The Department of Developmental Services (DDS) anticipates unknown and potentially significant General Fund (GF) cost pressures, likely in the millions of dollars annually, to add "at risk of homelessness" to the reasons a regional center may provide rent, lease, or mortgage payments and payments for household expenses for consumers receiving supported living services.

DDS indicates there are approximately 350 such consumers potentially at risk of homelessness. According to the California Department of Housing and Community Development's current Statewide Housing Plan, the average monthly fair market rent for a two-bedroom residence in California is $2,030. For context, if 300 consumers each received a $1,500 payment for six months, the annual cost would be $2.7 million.

1. DDS anticipates negligible costs associated with succession planning. DDS indicates they are currently modifying the IPP template, which will contain a caregiver succession planning section, and plans to release the updated template to regional centers in mid-2024.

According to the Legislative Analyst's Office, the General Fund faces a structural deficit in the tens of billions of dollars over the next several fiscal years.

VOTES

ASM HUMAN SERVICES: 6-0-1

YES: Lee, Essayli, Calderon, Gipson, Jackson, Ortega

ABS, ABST OR NV: Mathis

ASM APPROPRIATIONS: 15-0-0

YES: Wicks, Sanchez, Arambula, Bryan, Calderon, Wendy Carrillo, Dixon, Mike Fong, Grayson, Haney, Hart, Jim Patterson, Pellerin, Ta, Villapudua

UPDATED

VERSION: April 16, 2024

CONSULTANT: Alexandria Smith / HUM. S. / (916) 319-2089 FN: 0003232

Date of Hearing: May 15, 2024

ASSEMBLY COMMITTEE ON APPROPRIATIONS

Buffy Wicks, Chair

ABPCA Bill Id:AB 3291

Author:(Committee on Human Services) – As Amended Ver:April 16, 2024

Urgency: No State Mandated Local Program: No Reimbursable: No

SUMMARY:

This bill requires a regional center to include in the individual program plan (IPP) planning process a discussion of caregiver succession. This bill also includes “risk of homelessness” as a reason a regional center may provide housing payment assistance to a regional center consumer in a supported living situation.

Specifically, this bill:

1. Requires, when a regional center consumer is being cared for in a family home, and no later than the consumer’s 22nd birthday, a discussion regarding caregiver succession and, if determined by the consumer or the consumer’s representative to be necessary, development of a caregiver succession plan, which may include, but is not limited to, both of the following:
2. Identification of individuals who may provide care to the consumer when the current caregiver is no longer able to perform the necessary tasks.
3. Identification of possible housing options for the regional center consumer when the consumer can no longer live at home.
4. Defines “caregiver succession” to mean the point at which the primary caregiver is no longer able to fully care for a regional center consumer.
5. Adds “risk of homelessness” to the list of circumstances when a regional center may make rent, mortgage, or lease payments or pay for household expenses for a consumer receiving supported living services.

FISCAL EFFECT:

1. The Department of Developmental Services (DDS) anticipates unknown and potentially significant General Fund (GF) cost pressures, likely in the millions of dollars annually, to add “at risk of homelessness” to the reasons a regional center may provide rent, lease, or mortgage payments and payments for household expenses for consumers receiving supported living services.

DDS indicates there are approximately 350 such consumers potentially at risk of homelessness. According to the California Department of Housing and Community Development’s current Statewide Housing Plan, the average monthly fair market rent for a two-bedroom residence in California is $2,030. For context, if 300 consumers each received a $1,500 payment for six months, the annual cost would be $2.7 million.

1. DDS anticipates negligible costs associated with succession planning. DDS indicates they are currently modifying the IPP template, which will contain a caregiver succession planning section, and plans to release the updated template to regional centers in mid-2024.

According to the Legislative Analyst’s Office, the General Fund faces a structural deficit in the tens of billions of dollars over the next several fiscal years. 

COMMENTS:

1. Purpose. According to the chair of the Committee on Human Services:

This bill proposes to take a preventive approach, enabling independent living service consumers to use their regional center benefits for housing assistance, as well as allowing individuals to plan for their future when their caregiver can no longer assist in care and/or provide housing.

1. Background. IPP Succession Plans. An IPP is developed by a series of planning discussions and interactions with an IPP team—including, among other individuals, the consumer, their legally authorized representative, and one or more regional center representatives—and is based on the consumer’s needs and choices. IPP meetings are designed to help people with developmental disabilities outline in a person-centered manner a “preferred future” by identifying a preferred place to live, favorite people with whom to socialize, and preferred types of daily activities, including preferred jobs.

Due to medical advances and other reasons, the life expectancy for people with intellectual and developmental disabilities (IDDs) is now similar to the general population, ranging from the late-50s to the mid-70s, depending on the severity of the disability. This means those living with IDDs are now more often living past the ability of their caregivers, who are likely generally their parents, to provide proper care.

According to the California Policy Center for Intellectual and Developmental Disabilities, in California, there are about 47,050 individuals with IDDs with caregivers who over 60 years of age. In the U.S., the population of adults with IDDs over the age of 60 will nearly double from 640,000 in 2010 to 1.2 million in 2030.

The Alta California Regional Center launched a Coordinated Future Planning Taskforce with this issue in mind. The initiative calls on a group of stakeholders: clients, family members, advocates, and service providers to join with regional center staff in both developing and delivering training to service coordinators. This training focuses on the need for caregiver succession plans for each regional center client, as well as seeking to increase the competencies of service coordinators in discussing a range of living options at IPP meetings.

This bill aligns with Alta’s efforts by making caregiver succession planning a part of the IPP process for all 21 regional centers.

Housing Payments. Data indicates people with IDD experience disproportionate rates of poverty, which is even higher for those with a disability among communities of color. People with IDD are the most likely population to experience homelessness, be rent-burdened or unable to afford housing, and face the highest rates of housing discrimination. This is due to most of these individuals living on fixed incomes at or near poverty-level thresholds and the increased need for ADA-compliant homes. Existing law authorizes regional centers to make rent, mortgage, or lease payments under specified circumstances, including when the regional center verifies making the rent, mortgage, or lease payments or paying for household expenses is necessary to meet the specific care needs unique to the individual consumer, or when a consumer’s demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to the consumer or another. DDS indicates there are approximately 800 consumers classified as transient or homeless, and up to approximately 350 more potentially at risk of homelessness.

This bill additionally authorizes a regional center to provide housing assistance payments when the consumer’s risk of homelessness presents a health and safety risk to the consumer or another.

Analysis Prepared by: Jennifer Swenson / APPR. / (916) 319-2081

-Date of Hearing: April 23, 2024

ASSEMBLY COMMITTEE ON HUMAN SERVICES

Alex Lee, Chair

ABPCA Bill Id:AB 3291 (

Author:Committee on Human Services) – As Amended Ver:April 16, 2024

SUBJECT: Developmental services

SUMMARY: Updates regional center requirements regarding the planning process for the individual program plan (IPP). Specifically, this bill:

1. Requires, when a regional center consumer is being cared for in the family home, and no later than the consumer’s 22nd birthday, a discussion regarding caregiver succession and, if determined by the consumer or the consumer’s representative to be necessary, development of a caregiver succession plan, which may include, but is not limited to, both of the following:
2. Identification of individuals who may provide care to the consumer when the current caregiver is no longer able to perform the necessary tasks; and,
3. Identification of possible housing options for the regional center consumer when the consumer can no longer live at home.
4. Defines for the purpose of 1) above “caregiver succession” to mean the point at which the primary caregiver is no longer able to fully care for a regional center consumer.
5. Permits regional centers to make rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services, except services under specified circumstances.
6. Adds “risk of homelessness” to the list of circumstances when a regional center may help with housing costs as described in 3) above.

EXISTING LAW:

1. Establishes the Lanterman Developmental Disabilities Act (Act), which states that California is responsible for providing an array of services and supports sufficiently complete to meet the needs and choices of each person with developmental disabilities, regardless of age or degree of disability, at each stage of life, and to support their integration into the mainstream life of the community. (Welfare and Institutions Code [WIC] § 4500 et seq.)
2. Establishes an IPP as the process to ensure that services and supports are customized to meet the needs of consumers who are served by regional centers for the purpose of alleviating a developmental disability or toward the social, personal, physical, or economic habilitation or rehabilitation of an individual with a developmental disability, or toward the achievement and maintenance of independent, productive, and normal lives. (WIC § 4512(b))
3. Requires decisions concerning the consumer’s goals, objectives, and services and supports included in their IPP to be made by agreement between the regional center representative and the consumer or, when appropriate, the consumer’s parents, legal guardian, conservator, or authorized representative, at the program plan meeting. (WIC § 4646(d))
4. Requires the IPP planning processes to include:
5. A statement of the individual’s goals and objectives, a schedule of the type and nature of services to be provided and other specified information and considerations;
6. Review and modification, as necessary, by the regional center’s planning team no less frequently than every three years; and,
7. Statewide training and review of the IPP plan creation. (WIC § 4646.5)
8. Prohibits a regional center from making rent, mortgage, or lease payments on a supported living home, or pay for household expenses of consumers receiving supported living services, except under the following circumstances:
   1. If all of the following conditions are met, a regional center may make rent, mortgage, or lease payments as follows:
      1. The regional center executive director verifies in writing that making the rent, mortgage, or lease payments or paying for household expenses is required to meet the specific care needs unique to the individual consumer as set forth in an addendum to the consumer’s IPP, and is required when a consumer’s demonstrated medical, behavioral, or psychiatric condition presents a health and safety risk to themselves, or another;
      2. During the time period that a regional center is making rent, mortgage, or lease payments, or paying for household expenses, requires the supported living services vendor to assist the consumer in accessing all sources of generic and natural supports consistent with the needs of the consumer; and,
      3. The regional center is restricted from making rent, mortgage, or lease payments on a supported living home or paying for household expenses for more than six months, unless the regional center finds that it is necessary to meet the individual consumer’s particular needs pursuant to the consumer’s IPP. Requires the regional center to review a finding of necessity on a quarterly basis and for the regional center executive director to annually verify in an addendum to the consumer’s IPP.
   2. The regional center that was contributing to rent, mortgage, or lease payments or paying for household expenses prior to July 1, 2009, shall at the time of development, review, or modification of a consumer’s individual program plan determine if the conditions in a) are met. If the planning team determines that these contributions are no longer appropriate under this section, a reasonable time for transition, not to exceed six months, shall be permitted. (WIC § 4689)

FISCAL EFFECT: Unknown, this bill has not been analyzed by a fiscal committee.

COMMENTS:

Background: Individual Program Plans. IPPs are developed by a series of planning discussions and interactions with the IPP team—including, among other individuals, the consumer, their legally authorized representative, and one or more regional center representatives—and is based on the consumer’s needs and choices. IPP meetings are designed to help people with developmental disabilities outline in a person-centered manner a “preferred future” by identifying a preferred place to live, favorite people with whom to socialize, and preferred types of daily activities, including preferred jobs.

As required by the Act, the IPP promotes community integration and maximizes opportunities for each consumer to develop relationships, be part of community life, increase control over their life, and acquire increasingly positive roles in the community. The IPP must give the highest preference to those services and supports that allow minors to live with their families and adults to live as independently as possible in the community. The recommendations set forth in each IPP are the foundation for each individual’s care as it guides services received, eligibility for services, and can help assist in the quality of life for that individual.

Regional Centers’ Responsibilities. Direct responsibility for implementation of the Act’s service system is shared by the Department of Developmental Disabilities (DDS) and a statewide network of 21 private regional centers, and community-based nonprofit entities, established pursuant to the Act, that contract with DDS to carry out many of the state’s responsibilities. Regional centers are governed by a Board of Directors (Board) who are a part of the community, receive services, or a representatives of someone who receives services from the regional center. The Board is responsible for hiring (and firing) the Executive Director who is tasked with the day-to-day management of the regional center. DDS establishes contracts with regional centers that include specific, measurable, performance objectives. Every year, DDS reviews each regional center’s performance data for compliance with their contracts and posts them on their website.

Aging Caregiver Crisis. An increase in the aging population hits the intellectual/developmental disabilities community particularly hard. Those living with intellectual/developmental disabilities are living longer than ever before due to medical advancements, which in turn means they are living past the ability for their caregivers, who are likely parents, to provide safe and proper care.

The life expectancy for people with intellectual/developmental disabilities is now similar to the general population, ranging from the late-50s to the mid 70s, depending on the severity of the disability. (Bittles et al., The Influence Of Intellectual Disability On Life Expectancy. 2002) In California, there are currently about 47,058 individuals with developmental disabilities with caregivers who over 60 years of age (California Policy Center for Intellectual and Developmental Disabilities, 2024).

In the U.S., the population of adults with intellectual/developmental disabilities over the age of 60 will nearly double from 640,000 in 2010 to 1.2 million in 2030 (Heller, Tamar. People with Intellectual and Developmental Disabilities Growing Old).

These individuals need a plan moving forward to prevent homelessness or being forced to enter into a housing situation that is not of their choosing.

The Alta California Regional Center launched a Coordinated Future Planning Taskforce with this looming problem in mind. The initiative calls on a group of stakeholders: clients, family members, advocates, and service providers to join with regional center staff in both developing and delivering training to service coordinators. This training focuses on the need for caregiver succession plans for each regional center client, as well as seeking to increase the competencies of service coordinators in discussing a range of living options at IPP meetings. The training has four learning objectives:

1. Recognize the benefit of reflecting on your own beliefs about dying and end of life care and the impact that may have on your ability to help others with future life planning.
   • Dialogue with clients and families, in a culturally respectful, sensitive and humble way, regarding caregiver succession planning using appropriate language.
2. Articulate the benefit to clients and families of early planning for caregiver succession.
3. Describe a range of living options, including independent living, supported living, family home agencies, and residential care, to clients and their families.
   • Create a person-centered IPP narrative that captures the wishes of the client and planning team in relation to future living options.
4. Share future planning tools that can assist clients and families related to accessing affordable housing, power-of-attorney, special needs trust, CalABLE, conservatorship, and end-of-life care decisions.

This bill aligns with Alta’s efforts by making caregiver succession planning a part of the IPP process for all 21 regional centers.

Homelessness Within the Disabled Community. The longstanding goal for establishing care for individuals living with disabilities is to be “person-centered.” Meaning, that throughout planning for day-to-day services and supports the individual is centered in decision-making on how they like to live and what supports are required to meet the needs of the individual in the living option of their choice. Currently, adult regional center consumers have several different living options including their own family homes; adult residential facilities for persons with special health care needs; community care facilities; family home agencies; independent living programs; intermediate care facilities; and state-operated developmental centers and community facilities. While there are institutional settings, these are not always the setting of choice, but rather the only option. According to the National Core Indicators data, 52% of adults with intellectual and developmental disabilities have no choice or input regarding where they live, and 62% have no choice as to who they live with. Choices are often limited due to financial constraints.

People with disabilities experience disproportionate rates of poverty and an even higher rate of disproportionality for those with a disability among communities of color. People with disabilities are the most likely population to experience homelessness, be rent-burdened or unable to afford housing, and face the highest rates of housing discrimination. This is due to most of these individuals living on fixed incomes that are at or near poverty-level thresholds and the increased need for ADA-compliant homes.

Although generally accepted as an undercount due to challenges with identifying developmental disabilities among the homeless population, over 1,200 individuals with developmental disabilities have been identified as experiencing homelessness, and another 24,000 regional center consumers who are likely to experience being rent-burdened or seriously rent-burdened (California Policy Center for Intellectual and Developmental Disabilities, 2024).

Author’s Statement: According to the Chair of the Committee on Human Services, “This bill proposes to take a preventive approach, enabling independent living service consumers to use their regional center benefits for housing assistance, as well as allowing individuals to plan for their future when their caregiver can no longer assist in care and/or provide housing.”

Equity Implications: This bill seeks to ensure individuals with developmental disabilities are getting the necessary future planning and housing support to prevent homelessness. Future planning is essential to ensuring more individuals do not face homelessness or housing insecurity. According to a February 2024 report released by the California Policy Center for Intellectual and Developmental Disabilities, “The larger housing issue facing the [Intellectual and Developmental Disabilities] community is the lack of affordable and accessible housing. The vast majority of adults with [Intellectual and Developmental Disabilities] who live in [Independent Living Services] or [Supportive Living Services] are rent burdened or severely rent burdened which places them at greater risk of housing instability or homelessness. At least 50% of adults with [Intellectual and Developmental Disabilities] live with a family member or in the family home, and of those living in the family home up to 50% are highly likely to be living with an aging caregiver.” This bill will help to start addressing these issues and allow for a better understanding of the depth of the need.

RELATED AND PRIOR LEGISLATION:

AB 1957 (Wilson), Chapter 314, Statutes of 2022, added additional data points to the set of data that DDS and regional centers must report. These additional data mostly relate to services that were cut during the pandemic and recently restored, including social recreation, camping, educational services, and nonmedical therapies such as art, dance, and music. AB 1957 also added untimely translations of an IPP in a threshold language to be included in the set of data.

AB 1595 (Chesbro), Chapter 409, Statutes of 2014, broadly revised the statutory responsibilities of the State Council on Developmental Disabilities (SCDD), including restructuring the role and scope of the state’s 13 area boards, to comply with the requirements of the federal Administration on Intellectual and Developmental Disabilities. Additionally, revised the authorization for DDS to contract with SCDD for advocacy services within its state developmental centers.

AB 1041 (Chesbro), Chapter 677, Statutes of 2013, created a statewide Employment First Policy and set forth requirements related to the inclusion of employment opportunities and services in a regional center consumer's IPP.

AB 1244 (Chesbro) of 2011, would have created a self-determination program to provide individuals with a single, capitated funding allocation they may use to purchase services that support goals identified in their IPP. AB 1244 failed passage in the Senate Human Services Committee.

SB 1038 (Thompson), Chapter 1043, Statutes of 1998, authorized the creation of pilot projects for self-determination at three regional centers. Two other regional centers also created independent self-determination pilots under an alternative service delivery model, bringing the number of regional centers engaged in the pilot to five.

REGISTERED SUPPORT / OPPOSITION:

Support

Association of Regional Center Agencies

California Community Living Network

Easterseals Northern California

Lanterman Housing Alliance

Opposition

None on file.

Analysis Prepared by: Alexandria Smith / HUM. S. / (916) 319-2089