California Cuts

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Carolyn Jones at CalMatters 

The Medicaid cuts may have the most immediate effect. People with developmental disabilities typically receive therapy, home visits from aides, equipment and other services through regional centers, a network of 21 mostly government-funded nonprofits in California that coordinate services for people with disabilities. The goal of regional centers is to help people with disabilities live as independently as possible.

More than a third of regional centers’ funding comes from Medicaid, which is facing deep cuts under Trump’s budget. The money runs out at the end of January, and it’s unclear what services will be cut.

Schools also rely on Medicaid to pay for therapists, equipment, vision and hearing tests and other services that benefit all students, not just those with disabilities. In light of state budget uncertainty, it’s not likely the state could backfill the loss of Medicaid funding, and schools would have to pare down their services.

Early Start in Jeopardy

In The Politics of Autism, I discuss services for people with disabilities.

Kelly Keck at CalMatters:

This summer, Congress passed the One Big Beautiful Bill, extending tax cuts but slashing billions from Medicaid. In California, federal Medicaid funds sustain the regional centers that coordinate Early Start services for infants and toddlers with — or at risk for — developmental delays.

With California facing a multibillion-dollar deficit, the future of such early interventions looks precarious. Losing federal support means the state must fill the funding gap or scale back, thus putting therapy, progress and hope at risk for countless children and families.

I’ve witnessed what happens when families lose access to care. When speech therapy disappears, a baby’s first words vanish into silence. When physical therapy stops, a toddler’s first steps may never come.

Early Start is not a luxury; it’s a bridge from surviving to thriving. When that connection is frayed, a child’s trajectory is altered, sometimes irreversibly.

The Department of Developmental Services has already warned that its caseloads are surging as staffing shortages worsen. Federal cuts will only amplify this with fewer therapists, longer waitlists and children stranded during the most critical period of their brain development.

Every week’s delay, every family told to “wait and see,” means consequences that may never be undone, developmental windows that will not reopen.

California Master Plan

In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families find and access a variety of services.

A release from California Governor Gavin Newsom:

The Master Plan for Developmental Services: A Community-Driven Vision was released today with recommendations for strengthening support for Californians with intellectual and developmental disabilities and their families to live in the community.

Governor Gavin Newsom today announced the release of the Master Plan for Developmental Services: A Community-Driven Vision (Plan). The Plan makes recommendations on improvements for the service system, including reducing barriers to service access statewide for the growing developmental disabilities community. The Plan reflects extensive and diverse input from the community, capturing what Californians with intellectual and developmental disabilities and their families want to see in employment, education, transportation, health, behavioral health, developmental services, and other programs to live and thrive in community.
...
The Committee responsible for the development of the Plan was appointed by the California Health and Human Services Agency (CalHHS) Secretary in early 2024 and included five workgroups, all of which were made up of a diverse group of individuals with disabilities, family members, advocates, service providers, direct support professionals, and representatives from the state’s 21 regional centers. The Committee and its workgroups convened to develop the recommendations with public input through a robust year-long, statewide process. Additionally, more than 45 listening sessions were held with various diverse communities, service providers, policy experts, advocates, individuals and families.
The Plan’s recommendations

• Ensure that people are treated fairly: Addressing disparities in service delivery for underserved communities by standardizing services statewide and removing language, cultural, and location barriers.
• Allow people to make their own life choices: Providing tools and resources needed to support individuals in decision-making.  
• Get people the services they need and choose: Streamlining and simplifying processes to reduce wait times and provide timely access to critical services, as well as building stronger bridges across state service systems. 
• Ensure people are part of — and served by — a strong workforce: Investing in training, compensation, and recruitment of direct support professionals.
• Accountability and transparency should guide all systems that serve people: Equipping individuals, families, advocates, and professionals with resources and information needed to understand how the state is providing services to individuals and families.
• Data should guide the future of the developmental services system: Establishing and implementing clear metrics to assess whether needs are being met effectively and where improvements are needed. 

California provides the only life-long entitlement to services in the nation, funded with over $15 billion annually. The evolving needs of the community and access challenges highlighted the need to re-examine how the state delivers services locally to individuals with I/DD and to identify where stronger bridges can be built across employment, health, and social services systems. 

Learn more and read the full Plan HERE.

Important data:

 

New California Laws

In The Politics of Autism, I discuss services for people with disabilities.

A release from the Governor of California:

Governor Gavin Newsom signed a package of legislation today to make California more accessible and inclusive to all people with disabilities and strengthen California’s nation-leading commitment to support people with intellectual and developmental disabilities so they can live and thrive in their communities.

“When we say ‘California for ALL,’ we mean every single person in this state should be able to thrive – and that includes those with physical, intellectual, and developmental disabilities. I’m proud to continue our historic actions to protect vulnerable students, improve statewide supports, and strengthen future opportunities for the disabled community.”

Governor Gavin Newsom

Bigger picture

The bills signed by the Governor build on six years of actions to make the California dream more accessible to people with disabilities. Scores of investments and reforms will improve dyslexia detections, support special education services, and increase access to higher education, housing options, health care affordability, home care and community day services, public safety practices, civil rights protections, and more.

A priority of the Newsom administration has been supporting the 400,000 Californians with intellectual and developmental disabilities, such as Down Syndrome and autism. A Master Plan for Developmental Services was announced in January to engage the public in modernizing the system for better outcomes for all; public meetings continue in October and a framework will be released in March 2025. This week, the first Comprehensive Dashboard on people served and services provided was unveiled by the Department of Developmental Services. On January 1, 2025, rates paid to service providers will increase and the first quality incentive program will begin. This is the culmination of nearly $2 billion invested in provider rates by the Newsom administration and Legislature since 2022 in response to a landmark rate reform study in 2019.

What the new laws do

Create Historic Transparency, Accountability, and Equity in Support Services for People with Intellectual and Developmental Disabilities: The State’s regional centers that provide support services to people with intellectual and developmental disabilities will now be subject to the Public Records Act. This change will increase public transparency, accountability for outcomes, and equity of services in all communities. California’s service system is funded with approximately $15 billion annually to support 400,000 people with Down Syndrome, autism, and other developmental disabilities in their homes, schools, jobs, and communities.

The state will also begin to review and update biannually the provider rate reform study, beginning in 2025. The updated rate model will be posted on the Department of Developmental Services (DDS) website.

Max Benson’s Law to Protect Vulnerable Students’ Safety and Rights: Prone restraint is a technique that physically or mechanically restrains students in a face down position — one of the most dangerous forms of emergency interventions, which has resulted in severe injuries and even fatalities among students. This new law protects students by prohibiting its use in ALL California schools.

Jumpstarts Career Pathways for All: Students with disabilities who have an Individualized Education Program (IEP) will start planning for their post-secondary goals no later than age 16, and possibly as early as they begin high school– up to two years earlier than current law. One in 8 California students have an IEP and will have greater access to higher education and to work opportunities with planning that begins as early in the high school career as deemed appropriate by the student’s IEP team.

Additional legislation signed today to support the disability community and a more inclusive California for All:

SB 445 by Senator Anthony Portantino (D-Glendale) – Special education: standardized individualized education program template: translation.

SB 483 by Senator Dave Cortese (D-Campbell) – Pupil rights: prone restraint.

SB 939 by Senator Tom Umberg (D-Santa Ana) – Educational equity: school site and community resources: neurodivergent pupils.

SB 1001 by Senator Nancy Skinner (D-Oakland) – Death penalty: intellectually disabled persons.

SB 1197 by Senator Marie Alvarado-Gil (R-Modesto) – In-home respite services for families caring for children with an intellectual or developmental disability, including foster families.

AB 438 by Assemblymember Blanca Rubio (D-West Covina) – Pupils with exceptional needs: individualized education programs: postsecondary goals and transition services.

AB 1147 by Assemblymember Dawn Addis (D-San Luis Obispo) – Disability Equity, Transparency, and Accountability Act of 2024.

AB 1938 by Assemblymember James Gallagher (R-Chico) – Special education: inclusion and universal design for learning.

AB 2423 by Assemblymember Devon Mathis (R-Visalia) – Developmental services: rates.

AB 2821 by Assemblymember Tim Grayson (D-Concord) – Postsecondary education: students with disabilities.

Regional Center Transparency

In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families find and access a variety of services.

Regional centers have had many problems.  There are great spending disparities among them.  Access to services is very uneven.

 Chris Egusa at KQED:

http://www.autismpolicyblog.com/2022/05/inequitable-access-in-california.html allowing nearly 450,000 people with disabilities to access certain records and information related to their care for the first time.

The bill, AB 1147, passed the state Assembly and Senate without opposition at the end of August, after a 19-month fight in which many of its accountability measures were stripped out. The most impactful remaining provision would make the 21 nonprofit organizations throughout the state, called “regional centers,” subject to the California Public Records Act (PRA), a law that requires the public disclosure of government records when requested.

Proponents of the bill argue the regional centers perform a public function and are entirely funded by state dollars and should, therefore, be subject to the PRA. However, the centers that oppose the bill say that complying with it would strain an already cash-strapped system and could lead to accidental disclosures of personal information.

California’s developmental disability system operates with a budget of more than $15 billion, serving Californians with a range of conditions, including autism, cerebral palsy, intellectual disability and epilepsy. All funding and services flow through the regional centers, which connect people with disabilities to various service providers.

The governor is expected to sign or veto the bill by Sept. 26.

Regional Centers and Unspent Funds

In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families find and access a variety of services.

Emily Alpert Reyes at LAT:

Nearly $1 billion allocated for regional agencies that purchase supportive services for Californians with developmental disabilities went unspent in a recent year and was ultimately returned to the state, even as some disabled people and their families said they needed more help.

California provides assistance to people with autism and other developmental disabilities through a system of nonprofits called regional centers, which are contracted with the California Department of Developmental Services. Twenty-one of them exist across the state, each serving a distinct area. More than 400,000 California children and adults are served through the regional centers annually.

The system has been criticized for persistent gaps in spending on services for Californians of different races and in different regions. Families have complained it can be difficult to navigate.

...

Disabled people are legally entitled to such services in California, so “if the system is running short of resources, then the obligation shifts to the administration to seek additional resources from the legislature,” Westling said. “It really is designed to ensure that we have the resources necessary to meet people’s needs.”

But to attorney Valerie Vanaman, who represents people with disabilities and their families, leaving hundreds of millions of dollars unspent is a symptom of a system “that is falling apart.”

Vanaman said the pandemic led to regional centers losing experienced professionals and that working remotely had harmed the kind of collaboration needed to make sure people get the services they need.

“What you’re seeing is that where services should have been put together, where the money would have been spent, there was no internal structure to make it happen,” Vanaman said.

Areva Martin, chief executive of the nonprofit Special Needs Network Inc., said she understood the unusual circumstances facing regional centers amid COVID. “Even taking into account those things,” she said, “I think it speaks to a level of bureaucracy that makes regional centers very difficult to navigate.”

“It is disheartening to meet families who don’t have adequate services, who don’t have adequate resources, and then to hear about a billion dollars being returned,” Martin said.

Abuse in California

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families find and access a variety of services.

At LAT, Rebecca Ellis reports on abuse at Elwyn-Mayall, a home in Northridge for developmentally-disabled adults.

In California, an alphabet soup of bureaucracies is tasked with making sure people with developmental disabilities are not abused — and if they are, making sure those responsible are held accountable.

But advocates say the oversight system has broken down in California, allowing problem homes to stay in business and abusers to circulate through them.

The California Department of Social Services, which licenses group homes, often takes the lead on big investigations and can permanently bar employees from all homes if it finds enough evidence that abuse occurred. But advocates say complaints of abuse are rarely proved, making it easy for problematic staff, like Fabunmi, to drift from one home to another.

“The state doesn’t have enough investigators to do the sort of due diligence that’s required to understand what really happened,” said Jody Moore, a lawyer who represented Carter and specializes in cases of abuse in nursing and group homes.

...

In the last five years, the state has investigated 25 complaints alleging adults in Elwyn homes were injured or physically mishandled, according to publicly available investigation reports from the state’s licensing division. All but three were not substantiated.

The regional centers, meanwhile, have the power to impose sanctions on problem homes, including pulling their contract. But advocates say they rarely do, instead encouraging families to move their loved one out of the home — a “sanction” that families say is useless when there’s nowhere to go. On Nov. 2, the north county regional center sent Elwyn-Mayall a letter that cited state regulations, saying they would recommend relocation and “discuss the consequences of refusing to relocate” with families immediately. Nobody 
moved.

Former and current staff at regional centers say there’s little appetite for cracking down hard on providers when there’s a shortage of beds, particularly for those who need the most intensive support. It leaves staff with an essential question: How bad does the care have to be before it is worse than nothing?

“I’ve heard of vendor programs where the [inspectors] went in and the place is infested with bedbugs, the sheets haven’t clearly been changed in months, and they really are faced with a tough choice,” said a former longtime regional center staffer who spoke on the condition of anonymity to discuss her past employer. “They know there’s no open beds. So what do they do?”

 

Caregivers of Autistic Adults Face Red Tape

 In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Samara M. Wolpe, Amanda R. Johnson, Sunny Kim have an article at The Journal of Autism and Developmental Disorders titled "Navigating the Transition to Adulthood: Insights from Caregivers of Autistic Individuals." They conducted ten semi-structured interviews with caregivers of autistic young adults focused on transition to adulthood.

The difficulty of locating appropriate services for their child was a frequently expressed sentiment among participants. Many participants expressed the sentiment that, even when they found a seemingly suitable service that they thought would benefit their child, there was so much bureaucratic red tape that they were unable to obtain the service in time to use it and spent much of their free time fighting with service coordinators or attempting to get through to service professionals. One parent best summarized the experiences of wading through the restrictions put in place to limit access to services:

“It's a constant battle with Regional Center to get anything that you know benefits your kid. It’s so hard because they control everything, so you have to be polite… it's this constant churning of emotion because you want more for your kid and then you also understand why it's hard to get it, so there's this constant feeling like you're always in battle.” (Natalie)

Additionally, parents expressed frustration with navigating the Regional Center’s vendoring system. One participant stated:

“It’s so exhausting for the families, and then there's so much red tape… For example, they publish their list of vendors, but it's alphabetized, and for consumers of all age ranges for example, birth to 60 … well that's not helpful! I don’t need to know the name of the vendor. I need to know which vendors offer Adult Services, and what services they offer.” (Natalie)

Even those parents and caregivers who are able to get in touch with Regional Center coordinators and add themselves to the waitlist reported difficulty actually obtaining services. One parent (Liza) explained, “He's still living at home and we're in the process of trying to get him into supportive living, you know, we have an agency that agreed to work with us, but everybody's having a really hard time finding staff now so they're long waiting lists.” Even when services have been identified and the organization has agreed to provide the service, families still recalled waiting inordinate amounts of time to have the promised service come to fruition.

Kludgeocracy and Employment

Uncertainty and complexity are major themes of The Politics of Autism.

Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country."

 Marjorie Solomon and colleagues have a commentary at Autism Research titled "The challenges and promises of competitively employing autistic adults in the United States." 

[In] the U.S., IPS {Individualized Placement and Support] traditionally is delivered within states' mental health versus DD service systems, and this raises important questions related to its implementation with fidelity in autistic individuals served by the DD system. First, we are finding that in the California system of Regional Centers (state centers to provide services for people with disabilities), a single service coordinator takes responsibility for all service coordination (e.g., housing, independent living, transportation and mental health) in addition to supported employment for their large caseloads. Service delivery in general may be less integrated than it is in the mental health system, where it is customary for large teams working with the client on their employment, independent living, mental health, and general case coordination, to meet regularly to discuss client services. This is likely because in the mental health system, employment is considered a critical component of mental health. Employment is not at the core of what Regional Center coordinators do, and they may be unable to even stay abreast of all the employment programs and services available to their clients, given their many responsibilities. It also bears mention that, the improved integration of vocational and mental health services for autistic workers could be very useful given the high percentage of autistic individuals with mental health issues (Rast et al., 2021).

Surprisingly, upon initiating the Project we anticipated that adapting IPS for the autistic adults would be our largest challenge. Instead, we are finding that service system issues are more critical and although service systems differ by county, state, and locality, we believe that integration issues are common to them all. While both efforts may be costly and require systems change, as stated in the opening section of this Commentary, helping persons with autism to achieve lasting CIE is perhaps the most cost-effective, and socially beneficial way to improve outcomes for them, so it remains a worthy goal with potential synergistic outcomes. It is still early days, but we are hopeful that we are building a partnership within our local DD service community that can help break down barriers between agencies, engage in coordinated problem solving, and think creatively about resource and funding streams and thereby co-create a more integrated, comprehensive, and responsive supported employment system for all California adults.

California's Troubled Regional Centers

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

Maggie Angst and Mathew Miranda at The Sacramento Bee:

 In California, responsibility for finding services for people like Max sits with the state’s 21 regional centers — a $14 billion network of publicly-funded, privately-operated nonprofits that coordinate support for about 400,000 children and adults with developmental or intellectual disabilities.

Source: https://datawrapper.dwcdn.net/ZP9q6/2/data.csv 

 Despite efforts to address the longstanding inequities, racial and ethnic gaps in service continue to widen. Latino clients make up the largest share of California’s Regional Center clients, yet per capita, they receive significantly less funding than other racial and ethnic groups. For every dollar spent on White clients, Latino clients on average receive 41 cents, according to the most recent data from the Department of Developmental Services, which oversees the centers. Latinos at Sacramento’s Alta Regional Center got about 43 cents per $1 for White clients in 2021-22 – a considerable dip from 62 cents in 2015-16.

...

Many parents say they were forced to wait agonizing months or years to hear back about requests for certain services — a trend known as “denial by delay.” For some, it took upwards of eight to nine months just to get their child an initial assessment, which contradicts best practices around early intervention. Other parents reported being provided inaccurate information about costs or service eligibility. In too many cases, parents give up entirely, defeated by a bureaucratic maze they simply cannot navigate on their own.

Reforming California's Regional Centers

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with California's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

Assemblymember Dawn Addis, D-Morro Bay, has introduced a bill (AB 1147) to reform California’s developmental disability service system.

From Legislative Counsel's Digest:

The measure follows a series of recent reports, a state audit and public hearings that revealed racial disparities, inadequate oversight and limited accountability at California’s regional centers — a network of 21 nonprofits that coordinate services for about 400,000 children and adults with developmental and intellectual disabilities.

The Lanterman Developmental Disabilities Services Act makes the State Department of Developmental Services responsible for providing various services and supports to individuals with developmental disabilities, and for ensuring the appropriateness and quality of those services and supports. Pursuant to that law, the department contracts with regional centers to provide services and supports to persons with developmental disabilities.

This bill would enact the Disability Equity and Accountability of 2023, which would make various changes to the act for purposes including gathering relevant data and providing increased oversight of regional center operations and performance. The bill would require an evaluation of regional center performance by the department, which would be implemented using a common set of performance measures. The bill would require the assessments to use performance measures in 7 specific domains: community integration, employment, equity in access, case management, client and family choice, experience and satisfaction, human and civil rights, and health and safety. The bill would require the department to establish standards for theses performance measures, as specified, by July 1, 2024.

The bill would require the department, as part of its planning process for the planning and development of a uniform, statewide data automation system, to develop a charter for approval by the Secretary of the California Health and Human Services Agency and the Department of Technology. The bill would require the charter development process to include the participation and input of program consumers and families, researchers and quality and outcome evaluators, regional centers, and service providers. The bill would require the charter to include specified components, including, but not limited to, an impact statement, project guiding principles, and program goals, including maximizing the performance and business processes for the delivery of intellectual or developmental disabilities (IDD) system services to regional center consumers.

Existing law requires the department, in consultation with stakeholders, to identify a valid and reliable quality assurance instrument that assesses consumer and family satisfaction, provision of services in a linguistically and competent manner, and personal outcomes, as specified.

This bill would require the department by March 1, 2024, to submit a report to the Legislature describing the extent to which the requirements of this section have not been met, including the surveying of all consumers, including those who have not purchased services, and providing specific steps and the schedule by which these requirements will be met.

Existing law requires regional centers to conduct client assessments, and requires those assessments to be performed within 120 days following intake, and within no more than 60 days following initial intake if delay would expose the client to unnecessary risk to their health and safety, as specified.

This bill would revise those timeframes to require an assessment to be completed within 60 days of intake, and within 30 days of intake for at-risk clients.

Existing law declares the intent of the Legislature to ensure that the individual program plan (IPP) and provision of services and supports by the regional center system is centered on the individual and the family of the individual with developmental disabilities and takes into account the needs and preferences of the individual and the family, as prescribed.

This bill also would declare the intent of the Legislature for the IPP to be developed consistent with the federal Affordable Care Act, as specified, requiring community-based long-term services and supports be person-centered and self-directed, and ensuring that goals in any plan allow for innovation and nontraditional services service delivery. The bill would revise existing complaint procedures for consumers and their representatives, including requiring complaints to be made to the Director of Developmental Services, and requiring the director to issue a written administrative decision within 30 days of receiving the complaint, and send a copy of the decision to the complainant, the director of the subject regional center or state-operated facility, and the service provider, as prescribed.

The bill would revise the criteria applicable to regional center governing boards with which the state contracts, including with respect to terms, the composition of nominating committees, and training. The bill would require the department to establish and adopt a grievance procedure for governing board members, as specified. The bill also would make regional centers subject to requirements of the California Public Records Act.

Disparities in California

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with Califorinia's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

From Disability Voices United

Disability rights advocates released an alarming new report this week outlining deepening racial and ethnic disparities within California’s developmental disability services system, leading to dramatically reduced opportunities and potentially dangerous situations for adults with developmental disabilities.

DOWNLOAD REPORT: A MATTER OF RACE AND PLACE

“The 2022 Disability Voices United report paints a disturbing picture of systemic discrimination throughout California, despite numerous programs and $66 million spent to reduce chronic inequities,” said Judy Mark, Disability Voices United President, and mother of a son with autism. “In a state that claims to be as progressive and multi-cultural as California, people with developmental disabilities receive radically different levels of services depending on their race, ethnicity, or the region where they live. Our government cannot continue to allow this discrimination to continue.”

The new data show disparities are most glaring in Latino communities, where adults can receive as little as 43 cents for every dollar spent on services for white adults. Geography also plays a role. For example: a white adult in Golden Gate Regional Center (San Francisco) gets an average of $85,295 in services annually versus Latino adults at Inland Regional Center (San Bernardino) who receive $19,813 and Asians at Central Valley Regional Center (Fresno) who get only $17,299 in average annual services.

“As parents and advocates, we know that a day that goes by without services for our children is a day that can never be replaced. We need to see that same level of urgency from all of the 21 regional centers,” said Fernando Gomez, co-founder of the Integrated Community Collaborative and father of a teenage son with developmental disabilities. “We’re tired of excuses and our children can’t afford to wait. We can’t leave behind another generation of Latinos because the State allows inequities to plague our regional center system.”

The new Disability Voices United report is entitled “A Matter of Race and Place: Racial and Geographic Disparities Within California’s Regional Centers Serving Adults with Developmental Disabilities.” It looks at service funding levels at regional centers across California and includes detailed analysis based on race, ethnicity and geography. The DVU report follows a study released earlier this year by Public Counsel focusing on children of color with developmental disabilities, called “Examining Racial and Ethnic Inequities Among Children Served Under California’s Developmental Services System: Where Things Currently Stand.” The Public Counsel report also found that inequitable funding remains deeply rooted and is worsening between Hispanic and white children at most regional centers.

“Sadly, California’s regional center system still operates haphazardly with wild inconsistencies in funding,” said Brian Capra, senior staff attorney with Public Counsel and author of the report. “DDS continues to use a convoluted funding formula that gives unequal resources to different regional centers and employs a laissez-faire approach to service delivery that allows inequities to fester. Tragically, our most disadvantaged families continue to get the least amount of support.”

The reports include a list of recommendations to end disparities, including more regional center oversight, transparency and monitoring. They also recommend targeting funding that is tied to accountability and results

Disability Voices United is a California statewide advocacy organization exclusively directed by and for individuals with developmental disabilities and their families. DisabilityVoicesUnited.org

Public Counsel is the nation’s largest provider of pro bono legal services, utilizing an innovative legal model to promote justice, hope, and opportunity in lower-income and communities of color in Los Angeles and across the nation. PublicCounsel.org

The Integrated Community Collaborative supports Latino families affected by developmental disabilities in navigating support systems on a peer-to-peer basis through its Integradora Program to address cultural and language barriers to obtaining equitable services. IntegratedCommunityCollaborative.org

Inequitable Access in California

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with Califorinia's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

A news release from Public Counsel:

– A new report from Public Counsel shows that a six-year, $66 million effort by the State of California to reduce inequitable access to developmental services for children has been largely ineffective and that inequity “continues to plague communities of color.” The report evaluates the outcomes of a disparity reduction program established by the state in 2016 to reduce inequities within California’s regional center system – a network of state-funded but independently run agencies charged with providing services to Californians with developmental disabilities.

“Our report confirms what many families and advocates have said for years – this system is broken,” said Brian Capra, the report author and senior staff attorney with Public Counsel. “While California’s efforts were well-intentioned, its piecemeal approach to reform is inadequate for fixing deep, systemic discrimination that has dogged this system for decades. Tragically, our findings indicate that many racial and ethnic disparities have only gotten worse, and the most disadvantaged families continue to get the least amount of support.”

The report’s findings include:Inequitable funding is worsening between white and Latino children at most regional centers.Disparities in service expenditures between Latino and white children have improved in four regional centers over the past six years but worsened in the other 17 regional centers.Disparities for Asian children have worsened statewide over the past six years, yet the state does not have improvement goals for this population.Without explanation, California’s Department of Developmental Services (DDS) has not assigned improvement targets for Asian children in its disparity monitoring process and has not been tracking this group’s inequitable trajectory under this process.Disparities between children of “other ethnicity” and white children are the most profound among all race/ethnicity groups and are worsening.As with Asian children, DDS has not assigned improvement targets for “other ethnicity” children in its disparity monitoring process and is not tracking this group’s worsening plight under this process.
Children with “other ethnicity” are the fastest-growing race/ethnicity group.

For 30 years, advocates and families have raised concerns about disparities in service access. An L.A. Times exposé in 2011 revealed stark racial differences in services for children with autism, prompting then State Senator Darrell Steinberg to create a Task Force on Equity and Diversity that identified dozens of recommendations for reform – many of which remain unimplemented. Public Counsel’s report calls for a joint legislative oversight hearing to thoroughly review the worsening predicament, noting that there “have been just two legislative hearings dedicated exclusively to examining funding inequities” (in 2012 and 2017), and neither consisted of a fully impaneled set of legislators from both the Senate and Assembly.

“California’s elected officials and decision-makers have been aware of these inequities for well over a decade, yet we still have a system of separate and unequal services for children with disabilities,” said Sharon Balmer Cartagena, directing attorney of Public Counsel’s Children’s Rights Project. “A family’s race, geography, and language should never influence the services a child receives from the state of California to treat developmental disabilities. Yet each year, this discrimination is allowed to persist, and it is time for a full overhaul of this system.”

The report identifies nine recommendations for addressing the system’s problems. For example, it highlights that the Department of Developmental Services (DDS) has a flawed funding methodology that perpetuates the system’s inequities: “DDS’ current budgeting formula allocates funding to regional centers not according to their consumers’ needs but on what the regional centers have previously spent.” The formula results in drastically different spending on services for children – often thousands of dollars or more annually – even between regional centers within the same city.

“Sadly, California’s regional center system still operates haphazardly with wild inconsistencies in funding,” said Capra. “DDS continues to use a convoluted funding formula that gives unequal resources to different regional centers and employs a laissez-faire approach to service delivery that allows inequities to fester. We are proposing a targeted spending plan for each regional center to provide earmarked funding to unserved and underserved groups to bring them closer to funding equity with their white peers.”

In another example of haphazard oversight, the report found that DDS has allowed regional centers to categorize their clients such that “other ethnicity” is now a predominant racial category at many regional centers, even though U.S. Census data for local population characteristics indicate otherwise. The report states there is a “burgeoning population of children of ‘other ethnicity’ who currently suffer from these inequities in relative anonymity.“

In addition to inequities in service delivery connected to race, the report found that significant gaps persist in services between English-speaking and Spanish-speaking children. While disparities in service expenditures between these groups improved in eight regional centers over the past six years, the disparities worsened in the other 13 regional centers.

In a positive finding, the report identified that service delivery for Black children improved significantly over the past six years: “This is one instance where considerable progress has been made in reducing funding disparities.”

In another positive finding, the report identified that the South Central Los Angeles Regional Center (SCLARC) made significant progress in reducing service disparities among its clients: SCLARC was “single-handedly responsible for causing a five percentage point increase in disparity reduction improvement to the statewide aggregate data for Hispanic children and an eight percentage point increase in disparity reduction improvement to the statewide aggregate data for Spanish-speaking children.” It was able to make these improvements by “more than doubling its total expenditures in the past year for its children ages 3 through 21” (from around $65 million to $137 million) while keeping the size of this group essentially unchanged.

In one of its recommendations, the report suggests that “one potential model could be a targeted spending plan that effectuates more equitable results similar to those recently achieved by SCLARC during the 2020-2021 fiscal year.”View the report here
View the report fact sheet here (ENGLISH)
View the report fact sheet here (SPANISH)

US Identifying Autism at Earlier Ages

In The Politics of Autism, I discuss evaluation and diagnosis.

Kelly A. Shaw and colleagues have a report at MMWR titled "Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018."  The abstract:

Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates ASD prevalence and monitors timing of ASD identification among children aged 4 and 8 years. This report focuses on children aged 4 years in 2018, who were born in 2014 and had a parent or guardian who lived in the surveillance area in one of 11 sites (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) at any time during 2018. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement (diagnosis) in an evaluation, 2) a special education classification of ASD (eligibility), or 3) an ASD International Classification of Diseases (ICD) code. Suspected ASD also was tracked among children aged 4 years. Children who did not meet the case definition for ASD were classified as having suspected ASD if their records contained a qualified professional’s statement indicating a suspicion of ASD.

Results: For 2018, the overall ASD prevalence was 17.0 per 1,000 (one in 59) children aged 4 years. Prevalence varied from 9.1 per 1,000 in Utah to 41.6 per 1,000 in California. At every site, prevalence was higher among boys than girls, with an overall male-to-female prevalence ratio of 3.4. Prevalence of ASD among children aged 4 years was lower among non-Hispanic White (White) children (12.9 per 1,000) than among non-Hispanic Black (Black) children (16.6 per 1,000), Hispanic children (21.1 per 1,000), and Asian/Pacific Islander (A/PI) children (22.7 per 1,000). Among children aged 4 years with ASD and information on intellectual ability, 52% met the surveillance case definition of co-occurring intellectual disability (intelligence quotient ≤70 or an examiner’s statement of intellectual disability documented in an evaluation). Of children aged 4 years with ASD, 72% had a first evaluation at age ≤36 months. Stratified by census-tract–level median household income (MHI) tertile, a lower percentage of children with ASD and intellectual disability was evaluated by age 36 months in the low MHI tertile (72%) than in the high MHI tertile (84%). Cumulative incidence of ASD diagnosis or eligibility received by age 48 months was 1.5 times as high among children aged 4 years (13.6 per 1,000 children born in 2014) as among those aged 8 years (8.9 per 1,000 children born in 2010). Across MHI tertiles, higher cumulative incidence of ASD diagnosis or eligibility received by age 48 months was associated with lower MHI. Suspected ASD prevalence was 2.6 per 1,000 children aged 4 years, meaning for every six children with ASD, one child had suspected ASD. The combined prevalence of ASD and suspected ASD (19.7 per 1,000 children aged 4 years) was lower than ASD prevalence among children aged 8 years (23.0 per 1,000 children aged 8 years).

Interpretation: Groups with historically lower prevalence of ASD (non-White and lower MHI) had higher prevalence and cumulative incidence of ASD among children aged 4 years in 2018, suggesting progress in identification among these groups. However, a lower percentage of children with ASD and intellectual disability in the low MHI tertile were evaluated by age 36 months than in the high MHI group, indicating disparity in timely evaluation. Children aged 4 years had a higher cumulative incidence of diagnosis or eligibility by age 48 months compared with children aged 8 years, indicating improvement in early identification of ASD. The overall prevalence for children aged 4 years was less than children aged 8 years, even when prevalence of children suspected of having ASD by age 4 years is included. This finding suggests that many children identified after age 4 years do not have suspected ASD documented by age 48 months.

Public Health Action: Children born in 2014 were more likely to be identified with ASD by age 48 months than children born in 2010, indicating increased early identification. However, ASD identification among children aged 4 years varied by site, suggesting opportunities to examine developmental screening and diagnostic practices that promote earlier identification. Children aged 4 years also were more likely to have co-occurring intellectual disability than children aged 8 years, suggesting that improvement in the early identification and evaluation of developmental concerns outside of cognitive impairments is still needed. Improving early identification of ASD could lead to earlier receipt of evidence-based interventions and potentially improve developmental outcomes.

From the report:

The site in California had the highest cumulative incidence of ASD by age 48 months and the fewest cases of suspected ASD and was the only site where prevalence among children aged 4 years was higher than among children aged 8 years (11). Multiple factors could contribute to ASD identification at this site. One of the site’s data sources was a state-funded regional center that serves persons with developmental disabilities and their families, including providing evaluations and service coordination (15). In addition, efforts have been made to promote early identification in the area. For example, the “Get SET Early” program has trained hundreds of pediatricians to developmentally screen children at well-baby examinations and refer them for evaluation when indicated (16). The contribution of these and other factors to variability in ASD identification across sites and over time merits further investigation.

 

Action Item from Regional Center

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with Califorinia's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

Email rom the Frank D. Lanterman Regional Center:

TAKE ACTION - Call Governor Newsom's Office and Ask Him to Support the Regional Center Service Coordination Funding Request Help us support our California Legislature! We need Governor Newsom to support and strengthen services and supports for people with developmental disabilities. The California Legislature heard our voices and they reached a legislative agreement that our system needs: 921 service coordinators   Rate increases for our service providers   Lifting the suspension on non-medical therapies, social recreational services and camp

Please call Governor Newsom's office and say: "I would like the Governor to please support the regional center service coordination funding request and implementation of the Burns and Associates Rate Study, and lifting the suspension on low-cost high-value services."   How do you do this? It's easy! Call TODAY!   Call 916.445.2841   Dial 1 for English   Dial 6 to transfer to a representative   Dial 3 for option to leave a message, opinion or request.