Existing law, the Lanterman Developmental Disabilities Services 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. In order to provide opportunities for children to live with their families, existing law requires the department and regional centers to give a very high priority to the development and expansion of services and supports designed to assist families that are caring for their children at home, including respite for parents, homemaker services, counseling, and mental health services.

This bill would require the department to establish a Family Wellness Pilot Program under which regional centers shall provide counseling and peer support group services to the families of regional center consumers, as specified. families of regional center consumers who are 3 years of age or younger. The bill would require the department to evaluate the program and submit a report on the evaluation to the Legislature on or before July 1, 2029.

Existing law, the Lanterman Developmental Disabilities Services 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. In order to provide opportunities for children to live with their families, existing law requires the department and regional centers to give a very high priority to the development and expansion of services and supports designed to assist families that are caring for their children at home, including respite for parents, homemaker services, counseling, and mental health services.

This bill would require the department to establish a Family Wellness Pilot Program under which regional centers shall provide counseling and peer support group services to the families of regional center consumers, as specified. The bill would require the department to evaluate the program and submit a report on the evaluation to the Legislature on or before July 1, 2029.

Existing law, the Lanterman-Petris-Short Act, provides generally for the evaluation, treatment, and civil commitment of persons with mental health disorders and other specified persons.

This bill would make technical, nonsubstantive changes to the provision naming that act.

SENATE COMMITTEE ON

Senator Anna Caballero, Chair

2023 - 2024 Regular Session

AB 2360 (Rendon) - Developmental services: family services: counseling

Bill Summary:

AB 2360 would require the Department of Developmental Services (DDS) to establish a Family Wellness Pilot Program.

Fiscal Impact:

The DDS estimates the following:

• State operations costs of approximately $318,000 (General Fund and federal funds) for staffing resources to oversee the program and additional indeterminate costs for contracting for the legislative report.
• Local assistance General Fund costs of approximately $1 million per regional center, subject to the number of regional centers that would participate in the pilot. Budgeted costs for the two existing Family Wellness Pilot Programs are approximately $1 million per regional center to serve a small group of families of children under age three. Assuming all 21 regional centers would operate a pilot program similar to the existing two pilots and its costs, DDS anticipates total costs of approximately $21 million.

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; such disabilities include, among others: epilepsy, autism spectrum disorder, intellectual disability, and cerebral palsy. As there are no income-related eligibility criteria, Lanterman Act services are considered an entitlement program.

The Lanterman Act 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 center services may include diagnosis, evaluation, treatment, and care coordination of services such as personal care, day care, special living arrangements, and physical, occupational, and speech therapy. Additional services include, but are not limited to, mental health services, recreation, counseling for the individual served and their family, assistance locating a home, behavior training and modification programs, emergency and crisis intervention, and many others. The regional center system can also provide respite for family caregivers, short-term out-of-home care, social skills training, specialized medical and dental care, telehealth services and supports, training for parents of children with developmental disabilities, and transportation services necessary to ensure the delivery of services to persons with developmental disabilities.

The DDS is administering a federally funded Family Wellness Pilot Program to test culturally and linguistically sensitive supports for parents facing stress associated with their child’s recent diagnosis of a developmental disability. Valley Mountain Regional Center and Far Northern Regional Center were selected to participate in the pilot program beginning in early 2023.

Proposed Law:

Specific provisions of the bill would:

• Require DDS to establish a Family Wellness Pilot Program under which regional centers must provide counseling and peer support group services to the families of regional center consumers.
• Provide that, commencing with the 2024–25 fiscal year, families of regional center consumers who are three years of age or younger are eligible for services under the program.
• Require DDS to submit a report on the evaluation of the program to the Legislature on or before July 1, 2029.

-- END --

SENATE COMMITTEE ON HUMAN SERVICES

Senator Alvarado-Gil, Chair

2023 - 2024 Regular

Subject: Developmental services: family services: counseling

SUMMARY

This bill requires the Department of Developmental Services (DDS) to establish a Family Wellness Pilot Program. This bill requires regional centers to provide counseling and peer support group services to the families of regional center consumers three years or younger as part of the pilot program. This bill requires DDS to evaluate the program’s effectiveness and submit a report to the Legislature by July 1, 2029.

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, and at each stage of life, and to support their integration into the mainstream life of the community. (WIC 4500 et seq.)
2. Establishes the California Early Intervention Services Act, which states the intent of the Legislature that funding provided under Part C of the federal Individuals with Disabilities Education Act (20 U.S. Code 1431 et seq.) be used to improve and enhance early intervention services by developing innovative ways of providing family focused, coordinated services, which are built upon existing systems. Provides for direct services for eligible infants and toddlers and their families to be provided pursuant to the existing regional center system under the Lanterman Act and the existing local education agency system and regulations adopted pursuant thereto, and Part C of the federal Individuals with Disabilities Education Act. (Government Code [GOV] 95000)
3. Establishes a system of nonprofit Regional Centers, overseen by DDS, to provide fixed points of contract in the community for all persons with developmental disabilities and their families, to coordinate services and supports best suited to them throughout their lifetime. (WIC 4620)
4. Establishes an Individual Program Plan (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))
5. Establishes an Individualized Family Service Plan to be used in place of an IPP for an eligible infant or toddler. (GOV 95020)
6. Makes legislative findings and declarations that children with developmental disabilities most often have greater opportunities for educational and social growth when they live with their families. States the intent of the Legislature that regional centers provide or secure family support services, as specified. Requires DDS and regional centers to give a high priority to the development and expansion of services and supports designed to assist families that are caring for their children at home, when that is the preferred objective in the IPP. Specifies this assistance may include special training for parents and respite for parents, among other things. (WIC 4685)

This Bill:

1. Requires DDS to establish a Family Wellness Pilot Program under which regional centers shall provide counseling and peer support group services to the families of regional center consumers.
2. Commencing with the 2024–25 fiscal year, makes families of regional center consumers who are three years of age or younger eligible for services under the Family Wellness Pilot Program.
3. Requires DDS to evaluate the program’s effectiveness by looking at all of the following outcomes:
   1. Reduction in psychological distress of the individual and improvement in psychosocial functioning.
   2. Improvement in relational functioning of the family.
   3. Learning coping strategies for possible use in the future when another stress is encountered.
   4. Feasibility of virtual versus in-person counseling sessions.
4. Requires DDS to submit a report on the evaluation to the Legislature on or before July 1, 2029. Requires the report to be submitted in compliance with Government Code 9795.

FISCAL IMPACT

According to the Assembly Appropriations Committee analysis,

1. “Estimated ongoing General Fund costs of approximately $13.75 million annually to support the program statewide. This estimate is based on an existing pilot at the Valley Mountain Regional Center which serves about 4% of the intellectual and developmental disability population at an annual cost of $550,000.
2. “Estimated ongoing costs of an unknown amount, likely in the mid-hundreds of thousands of dollars for DDS staffing to establish and administer the program and to evaluate the program’s effectiveness as prescribed. The bill does not specify an end date for the pilot, although it requires DDS to submit the evaluation to the Legislature by July 1, 2029.

“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, “Most individuals with intellectual and developmental disabilities live at home and are cared for by family members. Because of this, the family unit takes on a tremendous responsibility as caregivers, and therefore must be nurtured along with their family member with special needs. AB 2360 creates a pilot program to allow Regional Centers across the state to provide supportive and mental health services to the family members of those with intellectual and developmental disabilities in order to help them manage this experience, which can be emotionally taxing on families. Doing so will ensure that all members of a family with a child who has intellectual and developmental disabilities can lead happy and fulfilling lives.”

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; such disabilities include, among others: epilepsy, autism spectrum disorder, intellectual disability, and cerebral palsy. As there are no income-related eligibility criteria, Lanterman Act services are considered an entitlement program.

Early Start

DDS administers the Early Start Program in partnership with regional centers, the Department of Education, local education agencies, and other state agencies. Early Start serves children under the age of three who may receive early intervention services if they have a developmental delay in either cognitive, communication, social or emotional, adaptive, or physical and motor development, including vision and hearing, or have certain risk conditions for these delays. Under Early Start, eligible individuals may receive screening and assessment; case management; family training; counseling; home visits; and services for health, nutrition, nursing, physical therapy, psychological, speech and language, and transportation. The Department of Finance estimates that approximately 66,000 children ages zero to three years old will receive developmental services in 2024–25.

Regional Center Services

The Lanterman Act 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 center services may include diagnosis, evaluation, treatment, and care coordination of services such as personal care, day care, special living arrangements, and physical, occupational, and speech therapy. Additional services include, but are not limited to, mental health services, recreation, counseling for the individual served and their family, assistance locating a home, behavior training and modification programs, emergency and crisis intervention, and many others. The regional center system can also provide respite for family caregivers, short-term out-of-home care, social skills training, specialized medical and dental care, telehealth services and supports, training for parents of children with developmental disabilities, and transportation services necessary to ensure the delivery of services to persons with developmental disabilities.

This bill would require DDS to establish a Family Wellness Pilot Program, and require regional centers to provide counseling and peer support group services to families of regional center consumers three years or younger as part of the pilot program.

Impact on Families

Individuals with a developmental disability require many more appointments than a neurotypical person would generally need, such as evaluations, occupational therapy, doctor’s appointments, and other various therapies. Individuals with a developmental disability also require more assisted family tasks for living than a neurotypical person, which can place added stress on a family. According to the Center for Disease Control, meeting the complex needs of an individual with an autism spectrum disorder can cause emotional, financial, and sometimes physical stress for families.^[1] Due to the various demands of being a parent or caregiver to someone with a developmental disability, it is important to consider support that families may need in addition to supports for the individual.

Parents of children who are diagnosed with a developmental disability or delay may experience reactions such as confusion, sadness, fear, denial and grief.^[2] According to one study^[3], if parents do not reach “resolution” with a child’s diagnosis, marked by acceptance and the end of active grieving, those parents were found to be more depressed and stressed than parents who did reach resolution. Another study described a need to address parents’ negative stressors to avoid transference to children with autism spectrum disorder, concluding:

“Due to the high likelihood of a ‘spillover’ of negative attitudes and behaviors from parent to child, there is an urgent need to develop strategies for alleviating the negative symptomatology experienced by the parents of children with autism spectrum disorder. High demands placed on parents of children with autism spectrum disorder take a toll on these parents, leading to both physiological and mental fatigue. One potential solution is family training to alleviate the emotional burdens and practical demands of the entire autism spectrum disorder family system during this time. Another potential approach can be to implement parental interventions for mitigating stress along with the therapy services provided for the child. The therapy providers can incorporate programs that focus on the mental well-being of the parents of children with autism spectrum disorder.”

Currently, caregivers of a consumer with a developmental disability may receive respite services to provide temporary relief from the responsibility of providing care for the consumer. Respite services typically include assisting caregivers in maintaining the consumer at home, ensuring the consumer’s safe care and supervision in the absence of caregivers, and attending to the consumer’s basic needs and activities normally provided by caregivers. While regional centers may provide counseling or therapy services for consumers, there are no similar services available for caregivers. Caregivers seeking mental health support must do so through the health care system.

This bill aims to address family stress and coping strategies to support the whole family by establishing a pilot program for regional centers to provide counseling and peer support group services to families of regional center consumers so they can be successful, as well as best care for their loved ones.

Existing Pilot Programs

The 2022 State Budget appropriated American Rescue Plan Act funding to improve accessibility to the Early Start Program. This funding included the creation of a Family Wellness Pilot Program under DDS to test culturally and linguistically sensitive supports for parents facing stress associated with their child’s recent diagnosis of a developmental disability^[4]. Valley Mountain Regional Center and Far Northern Regional Center were selected to participate in the pilot program beginning in early 2023^[5].

The Valley Mountain Regional Center pilot began in May 2023 and is expected to end in December 2024. The pilot program is focused on Early Start consumers, ages zero through three, and their families. The pilot program offers free counseling to families with no waiting list and families are seen as early as a few days after they call or are referred. According to Valley Mountain Regional Center, “Preliminary findings show significant reduction in psychological distress of the individual and slight improvement in the psycho-social functioning. There is significant improvement in the relational functioning of the family. The preliminary findings also show slight improvement in the couple’s relational functioning.” According to DDS, as of May 2024, Valley Mountain Regional Center has a total of 57 families being served by the pilot program. The pilot has served 94 individuals in family counseling to date, including 65 adults, 24 children, and five siblings.

The Far Northern Regional Center pilot, which began in June 2023, was designed to provide 12 weeks of family support group for families of children below age five with a recent developmental delay diagnosis or considered “at risk.” The planned topics for discussion include family dynamics, Early Start services, generic resource supports, grief counseling, developmental milestones, and celebrating accomplishments. The pilot program also provides up to five private counseling sessions to help families address stressors and develop supports. According to DDS, as of April 2024, Far Northern Regional Center has provided support group sessions to 66 families in Shasta County and 79 families in Butte County. Additionally, a total of 28 families were referred to individual counseling.

This bill would require DDS to establish a Family Wellness Pilot Program for regional centers to provide counseling and peer support group services to the families of regional center consumers who are three years or younger. This bill would require DDS to evaluate the program’s effectiveness by looking at specified outcomes, and submit a report to the Legislature by July 1, 2029.

Related/Prior Legislation:

AB 1 X2 (Thurmond), Chapter 3, Statutes of 2016, authorized the Service Access and Equity grant program through which $11 million in ongoing General Fund resources for DDS was provided to assist regional centers in reducing purchase of service disparities.

COMMENTS

This bill seeks to provide mental health intervention for families of regional center consumers to reduce the emotional toll that comes with learning of, and coping with, a child’s diagnosis and how to care for the child. This whole-family intervention would benefit caregivers and children by providing families with an outlet and coping mechanisms to manage stress. This bill seeks to build upon existing pilot projects at the Valley Mountain and Far Northern regional centers. According to DDS, parents who participated in these pilots reported notable improvements in their mental health, family functioning, and understanding of strategies to support their child.

Currently, there are no established mental health services for parents or caregivers of young children with a developmental disability diagnosis. Caregivers may request referrals to mental health services through medical insurance, but referrals can take months and may be low priority while caretakers are trying to attend to a child’s care needs.

PRIOR VOTES

POSITIONS

Support:

The Arc and United Cerebral Palsy California Collaboration (Sponsor)

Association of Regional Center Agencies
California Disability Services Association
Educate. Advocate.

Oppose:

None

-- END --

1. https://www.cdc.gov/autism/living-with/index.html ↑

2. https://www.parentcenterhub.org/notalone/ ↑

3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9963369/ ↑

4. https://www.dds.ca.gov/wp-content/uploads/2022/05/May_Revision_2022.pdf ↑

5. https://www.chhs.ca.gov/wp-content/uploads/2024/05/Equity-related-initiatives-May-2024.pdf ↑

ASSEMBLY THIRD READING

ATR Bill Id:AB 2360

Author:(Rendon)

As Amended Ver:May 16, 2024

Majority vote

SUMMARY

Requires the Department of Developmental Services (DDS) to establish a Family Wellness Pilot Program under which regional centers provide counseling and peer support group services to the families of regional center consumers.

Major Provisions

1. Establishes a Family Wellness Pilot Program.
2. Provides that commencing with the 2024–25 fiscal year, families of regional center consumers who are three years of age or younger are eligible for services under Family Wellness Pilot Program.
3. Requires DDS to evaluate and submit a legislative report on or before July 1, 2029, on the Family Wellness Pilot Program's effectiveness by looking at all of the following outcomes:
   1. Reduction in psychological distress of the individual and improvement in psychosocial functioning;
   2. Improvement in relational functioning of the family;
   3. Learning coping strategies for possible use in the future when another stress is encountered; and,
   4. Feasibility of virtual versus in-person counseling sessions.

COMMENTS

Background: The Lanterman Developmental Disabilities Act was originally enacted in 1969. The Lanterman Act provides entitlement to services and supports for individuals ages three and older who have a qualifying developmental disability. Qualifying disabilities include autism, epilepsy, cerebral palsy, intellectual disabilities, and other conditions closely related to intellectual disabilities that require similar treatment. To qualify, an individual must have a disability that is substantial, began before the age of 18, and is expected to be lifelong. There are no income-related eligibility criteria. Direct responsibility for implementation of the Lanterman Act's service system is shared by DDS and a statewide network of 21 regional centers with more than 40 offices located throughout the state. According to DDS, both geographic accessibility and population density were considered when selecting locations for the 21 regional centers. The boundaries for the regional centers largely conform to county boundaries, except in Los Angeles County, which is by health districts and not by county.

As of August 2023, the 21 regional centers served 459,395 consumers, providing services such as information and referral; assessment and diagnosis; counseling; lifelong individualized planning and service coordination; purchase of necessary services included in the individual program plan (IPP); resource development; outreach; assistance in finding and using community and other resources; advocacy for the protection of legal, civil and service rights; early intervention services for at-risk infants and their families; genetic counseling; family support; planning, placement, and monitoring for 24-hour out-of-home care; training and educational opportunities for individuals and families; and, community education about developmental disabilities. Regional Centers' services vary at each location. One location might offer one program and the next might offer what they consider an alternative or offer nothing comparable. Geographically, regional centers' spending also varies.

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 representative 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.

Impact on Families with a Loved One Living with Autism and Intellectual Developmental Disability (IDD). Often individuals with an IDD require exponentially more appointments including evaluations, occupational therapy, doctor's appointments, and other various therapies than a neurotypical person would generally need. Individuals with an IDD also require more assisted family tasks for living than a neurotypical person, which can place added stress on a family.

According to the Center for Disease Control, "meeting the complex needs of a person with an [autism spectrum disorder] ASD can put families under a great deal of stress—emotional, financial, and sometimes even physical." Due to the various demands of being a parent, guardian, or sibling to someone with an IDD, it is important to consider what support families might need as well. In an academic study titled Implications of Parental Stress on Worsening of Behavioral Problems in Children with Autism during COVID-19 Pandemic: "The Spillover Hypothesis" by Eshraghi, A.A., Cavalcante, L., Furar, E. et al., they concluded that,

Due to the high likelihood of a "spillover" of negative attitudes and behaviors from parent to child, there is an urgent need to develop strategies for alleviating the negative symptomatology experienced by the parents of children with ASD. High demands placed on parents of children with ASD take a toll on these parents, leading to both physiological and mental fatigue. One potential solution is family training to alleviate the emotional burdens and practical demands of the entire ASD family system during this time. Another potential approach can be to implement parental interventions for mitigating stress along with the therapy services provided for the child. The therapy providers can incorporate programs that focus on the mental well-being of the parents of children with ASD.

This bill aims to address family stress and coping strategies to support the family by establishing a pilot program to have regional centers provide counseling and peer support group services to the families of regional center consumers so that they can be successful as well as best care for their loved ones.

Valley Mountain Regional Center Family Wellness Pilot Project. One of 21 regional centers currently runs a Family Wellness Pilot Project. Valley Mountain Regional Center (VMRC) started this pilot program in May 2023 using America Rescue Plan Act (ARPA) funding which will fund this pilot until approximately December 2024. This pilot focused on early-start consumers, ages 0-3, and their families. This pilot offers free counseling to families with no waiting list and families are seen as early as a few days after they call or are referred. This program is the basis for the concept of this bill which will expand this pilot to all 21 regional centers and expand applicability to be for families of all clients, not just early start. Due to the relatively new nature of this pilot at 10-11 months old, a final program analysis or outcomes have not been measured yet. However, according to VMRC,

Preliminary findings show significant reduction in psychological distress of the individual and slight improvement in the psycho-social functioning. There is significant improvement in the relational functioning of the family. The preliminary findings also show slight improvement in the couple's relational functioning. The preliminary data also show that families can learn coping skills that they can use in the future in case they encounter another stressful event in life. And lastly, the preliminary data shows that when comparing virtual versus in-person counseling, we have found no significant difference in the family's assessment of the quality and satisfaction with the service.

Equity Implications: Family therapy is often not a covered benefit for health insurance. As such, many families cannot afford therapy or find ways to overcome stressors or how to manage or cope with life on their own. In a 2021 National Survey on Drug Use and Health, only 25% of Asian Americans, 36% of Hispanic and Latino Americans, and 21% of Black Americans received mental health services compared to 52% of non-Hispanic White Americans. There is a well-documented lack of access to mental health services. This bill is aimed at helping families navigate the difficulties of providing support and providing more direct access to IDD families.

According to the Author

"Most individuals with intellectual and developmental disabilities (IDD) live at home and are cared for by family members. Because of this, the family unit takes on a tremendous responsibility as caregivers, and therefore must be nurtured along with their family member with special needs. [This bill] creates a pilot program to allow Regional Centers across the state to provide supportive and mental health services to the family members of those with IDD in order to help them manage this experience, which can be emotionally taxing on families. Doing so will ensure that all members of a family with a child who has IDD can lead happy and fulfilling lives."

Arguments in Support

According to the sponsors of this bill, The Arc of California and United Cerebral Palsy California Collaboration, "Families with a child or and adult with a Developmental Disability have had support for the child or adult due to the Lanterman Act, however not the whole family. The stress that occurs to the parents and siblings taking care of their family members is an impact and needs to be recognized. The mortality rate on marriage is over 80% with families that care for a loved one with Developmental Disabilities. Often time siblings feel left out because so much attention is needed for their brother or sister. The Family Wellness program will provide the necessary counseling and support services to families served by the regional centers to work towards protecting the stability of the family."

Arguments in Opposition

No opposition on file.

FISCAL COMMENTS

According to the Assembly Committee on Appropriations on May 16, 2024:

1. Estimated ongoing General Funds (GF) costs in the low millions of dollars annually to expand the current Family Wellness Pilot Program to families of all regional center consumers aged zero to three years old.
2. Estimated ongoing costs of an unknown amount, likely in the mid-hundreds of thousands of dollars for DDS staffing to establish and administer the program and to evaluate the program's effectiveness as prescribed. The bill does not specify an end date for the pilot, although it requires DDS to submit the evaluation to the Legislature by July1, 2029.

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: 7-0-0

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

ASM APPROPRIATIONS: 11-0-4

YES: Wicks, Arambula, Bryan, Calderon, Wendy Carrillo, Mike Fong, Grayson, Haney, Hart, Pellerin, Villapudua

ABS, ABST OR NV: Sanchez, Dixon, Jim Patterson, Ta

UPDATED

VERSION: May 16, 2024

CONSULTANT: Alexandria Smith / HUM. S. / (916) 319-2089 FN: 0003424

Date of Hearing: April 24, 2024

ASSEMBLY COMMITTEE ON APPROPRIATIONS

Buffy Wicks, Chair

ABPCA Bill Id:AB 2360

Author:(Rendon) – As Amended Ver:March 21, 2024

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

SUMMARY:

This bill requires the Department of Developmental Services (DDS) to establish a Family Wellness Pilot Program.

Specifically, this bill:

1. Requires DDS to establish a Family Wellness Pilot Program under which regional centers provide counseling and peer support group services to the families of regional center consumers.
2. Specifies families of regional center consumers who are 6 years of age or younger are eligible for the program beginning in fiscal year (FY) 2024–25, and families of all regional center consumers are eligible beginning in FY 2025–26.
3. Requires DDS to evaluate effectiveness of the Family Wellness Pilot Program based on specified outcomes, such as a reduction in psychological distress of the individual and improvement in relational functioning of the family, among other outcomes, and to submit a report on the evaluation to the Legislature by July 1, 2029.

FISCAL EFFECT:

1. Estimated ongoing General Funds (GF) costs of approximately $13.75 million annually to support the program statewide. This estimate is based on an existing pilot at the Valley Mountain Regional Center (VMRC) which serves about 4% of the intellectual and developmental disability (IDD) population at an annual cost of $550,000.
2. Estimated ongoing costs of an unknown amount, likely in the mid-hundreds of thousands of dollars for DDS staffing to establish and administer the program and to evaluate the program’s effectiveness as prescribed. The bill does not specify an end date for the pilot, although it requires DDS to submit the evaluation to the Legislature by July1, 2029.

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. The author seeks to support families caring for individuals with IDDs. According to the author:

Most individuals with IDD live at home and are cared for by family members. Because of this, the family unit takes on a tremendous responsibility as caregivers, and therefore must be nurtured along with their family member with special needs. [This bill] creates a pilot program to allow Regional Centers across the state to provide supportive and mental health services to the family members of those with IDD in order to help them manage this experience, which can be emotionally taxing on families. Doing so will ensure that all members of a family with a child who has IDD can lead happy and fulfilling lives.

1. Background. Existing law, the Lanterman Developmental Disabilities Act, entitles to services and supports an individual age three and older who has a qualifying developmental disability. Qualifying disabilities include autism, epilepsy, cerebral palsy, intellectual disabilities, and other conditions closely related to intellectual disabilities that require similar treatment. To qualify, an individual must have a disability that is substantial, began before the age of 18, and is expected to be lifelong. There are no income-related eligibility criteria.

Direct responsibility for implementation of the Lanterman Act’s service system is shared by DDS, a statewide network of 21 regional centers with more than 40 offices located throughout the state, and community-based nonprofit entities that contract with DDS to carry out many of the state’s responsibilities. As of August 2023, the 21 regional centers served 459,395 consumers.

Numerous studies show that many families face mental health challenges due to the added stress of caring for and meeting the complex needs of a person with IDD. Findings suggest this stress can lead to reduced access to services and supports for the person with IDD due to the mental health status of the parents and caregivers.

The Valley Mountain Regional Center (VMRC), covering San Joaquin and nearby counties, began a Family Wellness Pilot Project in May 2023, using America Rescue Plan Act (ARPA) funding. The pilot focuses on early-start consumers, ages zero to three, and their families. The pilot offers free counseling to families, who are seen within a few days of calling or being referred. Because the pilot is still ongoing, a final analysis of the program and its outcomes has not yet occurred. However, preliminary findings show a significant reduction in the psychological distress of the individual and significant improvement in the relational functioning of the family.

The VMRC pilot program is the basis for this bill, which will expand the VMRC pilot to all 21 regional centers and expand applicability to families of all consumers.

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

Date of Hearing: April 2, 2024

ASSEMBLY COMMITTEE ON HUMAN SERVICES

Alex Lee, Chair

ABPCA Bill Id:AB 2360 (

Author:Rendon) – As Amended Ver:March 21, 2024

SUBJECT: Developmental services: family services: counseling

SUMMARY: Requires the Department of Developmental Services (DDS) to establish a Family Wellness Pilot Program under which regional centers provide counseling and peer support group services to the families of regional center consumers. Specifically, this bill:

1. Establishes a Family Wellness Pilot Program with the following eligibility requirements:
   1. Commencing with the 2024–25 fiscal year, families of regional center consumers who are 6 years of age or younger; and,
   2. Commencing with the 2025–26 fiscal year, families of all regional center consumers.
2. Requires DDS to evaluate and submit a legislative report on or before July 1, 2029, on the Family Wellness Pilot Program’s effectiveness by looking at all of the following outcomes:
   1. Reduction in psychological distress of the individual and improvement in psychosocial functioning;
   2. Improvement in relational functioning of the family;
   3. Learning coping strategies for possible use in the future when another stress is encountered; and,
   4. Feasibility of virtual versus in-person counseling sessions.

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 a system of nonprofit regional centers, overseen by 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. Provides the Director of DDS the authority to issue directives to regional centers when necessary to protect a consumer’s health, safety, and welfare, or when needed to ensure that regional centers comply with the Act or other state or federal law. (WIC § 4639.6)
4. States the intent of the Legislature that regional centers provide or secure family support services that do all of the following:
   1. Respect and support the decision-making authority of the family.
   2. Be flexible and creative in meeting the unique and individual needs of families as they evolve over time.
   3. Recognize and build on family strengths, natural supports, and existing community resources.
   4. Be designed to meet the cultural preferences, values, and lifestyles of families.
   5. Focus on the entire family and promote the inclusion of children with disabilities in all aspects of school and community. (WIC § 4685 (b))

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

COMMENTS:

Background: The Lanterman Developmental Disabilities Act was originally enacted in 1969. The Lanterman Act provides entitlement to services and supports for individuals ages three and older who have a qualifying developmental disability. Qualifying disabilities include autism, epilepsy, cerebral palsy, intellectual disabilities, and other conditions closely related to intellectual disabilities that require similar treatment. To qualify, an individual must have a disability that is substantial began before the age of 18, and is expected to be lifelong. There are no income-related eligibility criteria. Direct responsibility for implementation of the Lanterman Act’s service system is shared by DDS and a statewide network of 21 regional centers with more than 40 offices located throughout the state. According to DDS, both geographic accessibility and population density were considered when selecting locations for the 21 regional centers. The boundaries for the regional centers largely conform to county boundaries, except in Los Angeles County, which is by health districts and not by county.

As of August 2023, the 21 regional centers served 459,395 consumers, providing services such as information and referral; assessment and diagnosis; counseling; lifelong individualized planning and service coordination; purchase of necessary services included in the IPP; resource development; outreach; assistance in finding and using community and other resources; advocacy for the protection of legal, civil and service rights; early intervention services for at-risk infants and their families; genetic counseling; family support; planning, placement, and monitoring for 24-hour out-of-home care; training and educational opportunities for individuals and families; and, community education about developmental disabilities. Regional Centers’ services vary at each location. One location might offer one program and the next might offer what they consider an alternative or offer nothing comparable. Geographically, regional centers’ spending also varies.

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 representative 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.

Impact on Families with a Loved One Living With Autism and Intellectual Developmental Disability (IDD). Often individuals with an IDD require exponentially more appointments including evaluations, occupational therapy, doctor’s appointments, and other various therapies than a neurotypical person would generally need. Individuals with an IDD also require more assisted family tasks for living than a neurotypical person, which can place added stress on a family.

According to the Center for Disease Control, “meeting the complex needs of a person with an [autism spectrum disorder] ASD can put families under a great deal of stress—emotional, financial, and sometimes even physical.” Due to the various demands of being a parent, guardian, or sibling to someone with an IDD, it is important to consider what support families might need as well. In an academic study titled Implications of Parental Stress on Worsening of Behavioral Problems in Children with Autism during COVID-19 Pandemic: “The Spillover Hypothesis” by Eshraghi, A.A., Cavalcante, L., Furar, E. et al., they concluded that,

“Due to the high likelihood of a “spillover” of negative attitudes and behaviors from parent to child, there is an urgent need to develop strategies for alleviating the negative symptomatology experienced by the parents of children with ASD. High demands placed on parents of children with ASD take a toll on these parents, leading to both physiological and mental fatigue. One potential solution is family training to alleviate the emotional burdens and practical demands of the entire ASD family system during this time. Another potential approach can be to implement parental interventions for mitigating stress along with the therapy services provided for the child. The therapy providers can incorporate programs that focus on the mental well-being of the parents of children with ASD.”

This bill aims to address family stress and coping strategies to support the family by establishing a pilot program to have regional centers provide counseling and peer support group services to the families of regional center consumers so that they can be successful as well as best care for their loved ones.

Valley Mountain Regional Center Family Wellness Pilot Project. One of 21 regional centers currently runs a Family Wellness Pilot Project. Valley Mountain Regional Center (VMRC) started this pilot program in May 2023 using America Rescue Plan Act (ARPA) funding which will fund this pilot until approximately December 2024. This pilot focused on early-start consumers, ages 0-3, and their families. This pilot offers free counseling to families with no waiting list and families are seen as early as a few days after they call or are referred. This program is the basis for the concept of this bill which will expand this pilot to all 21 regional centers and expand applicability to be for families of all clients, not just early start. Due to the relatively new nature of this pilot at 10-11 months old, a final program analysis or outcomes have not been measured yet. However, according to VMRC,

“Preliminary findings show significant reduction in psychological distress of the individual and slight improvement in the psycho-social functioning. There is significant improvement in the relational functioning of the family. The preliminary findings also show slight improvement in the couple’s relational functioning. The preliminary data also show that families can learn coping skills that they can use in the future in case they encounter another stressful event in life. And lastly, the preliminary data shows that when comparing virtual versus in-person counseling, we have found no significant difference in the family’s assessment of the quality and satisfaction with the service.”

Author’s Statement: According to the Author, “Most individuals with intellectual and developmental disabilities (IDD) live at home and are cared for by family members. Because of this, the family unit takes on a tremendous responsibility as caregivers, and therefore must be nurtured along with their family member with special needs. AB 2360 creates a pilot program to allow Regional Centers across the state to provide supportive and mental health services to the family members of those with IDD in order to help them manage this experience, which can be emotionally taxing on families. Doing so will ensure that all members of a family with a child who has IDD can lead happy and fulfilling lives.”

Equity Implications: Family therapy is often not a covered benefit for health insurance. As such, many families cannot afford therapy or find ways to overcome stressors or how to manage or cope with life on their own. In a 2021 National Survey on Drug Use and Health, only 25% of Asian Americans, 36% of Hispanic and Latino Americans, and 21% of Black Americans received mental health services compared to 52% of non-Hispanic White Americans. There is a well-documented lack of access to mental health services. This bill is aimed at helping families navigate the difficulties of providing support and providing more direct access to IDD families.

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 1 X2 (Thurmond), Chapter 3, Statutes of 2016, authorized the Service Access and Equity grant program through which $11 million in ongoing General Fund resources for DDS was provided to assist regional centers in reducing purchase of service disparities.

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.

AB 9 X4 (Evans), Chapter 9, Statutes of 2009, 4th Extraordinary Session, created an option for the individual choice budget, which allowed for the purchase of otherwise suspended services but required savings of $35.1 million. AB 9 X4 has not been implemented.

AB 131 (Committee on Budget), Chapter 80 Statutes of 2005, established a self-directed services option statewide, contingent upon approval of a federal waiver. A waiver was never obtained, and it has not been implemented.

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 to five the number of regional centers engaged in the pilot.

REGISTERED SUPPORT / OPPOSITION:

Support

The Arc and United Cerebral Palsy California Collaboration (Sponsor)

Association of Regional Center Agencies

Educate. Advocate.

Opposition

None on file.

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