California has long made a promise that distinguishes it from much of the nation. Through the Lanterman Act, our state recognizes that people with developmental disabilities have a right to receive the supports necessary to live in their communities instead of institutions.
Today, that promise deserves reaffirmation.
The federal government is adopting new Medicaid community engagement requirements and refining how disability-based exemptions are administered. At the same time, California is implementing major reforms to the Self-Determination Program, including standardized spending plans, statewide definitions of cost effectiveness and greater administrative oversight.
These are separate legal systems. Yet they are evolving simultaneously.
As an autistic client of the San Diego Regional Center, I find myself asking questions that many families are quietly asking as well.
Will California continue to rely exclusively on the Lanterman Act’s definition of developmental disability? Or will it eventually incorporate evolving federal functional criteria into how support needs are documented, services are authorized, or eligibility is reassessed?
If federal Medicaid increasingly evaluates functional capacity, community engagement or disability-based exemptions using standardized criteria, will California develop its own transparent standards for developmental services, or simply adapt to whatever federal guidance emerges?
Most importantly, what protections will exist for people whose disabilities are lifelong but whose support needs cannot be measured by a single diagnosis or a brief clinical encounter?
These are not theoretical questions.
Many autistic adults, people with intellectual disabilities, cerebral palsy, epilepsy, acquired brain injuries, and individuals with co-occurring psychiatric conditions remain stable precisely because they receive ongoing supports. Their ability to remain housed, avoid hospitalization, manage medications, maintain relationships, communicate effectively, or safely navigate the community often depends on those services continuing uninterrupted.
If public policy ever begins measuring only who appears “independent enough,” California risks confusing successful support with absence of disability.
The consequence would not be independence. It would also entail:
Homelessness Psychiatric crises Emergency room visits Encounters with law enforcement Institutional placements that cost taxpayers far more than community supports ever didThis is why California should act before uncertainty becomes policy.
The Department of Developmental Services should publicly affirm that any future changes to Medi-Cal administration or federal Medicaid requirements will not alter Regional Center eligibility absent legislative action. If California believes additional functional assessment tools are appropriate, those tools should be developed transparently, subjected to public review, and designed to strengthen community living rather than restrict it.
California should also consider establishing statewide functional support criteria that recognize communication disabilities, executive functioning impairments, adaptive functioning, co-occurring mental illness, and the reality that disability exists on a continuum.
The goal should not be identifying who can lose services. The goal should be identifying who requires stable supports to avoid preventable institutionalization, homelessness, incarceration, or repeated psychiatric hospitalization.
We should not wait until people fall apart to decide they qualified for help all along.
The Lanterman Act was revolutionary because it recognized that disability policy should be measured by whether people can live meaningful lives in their communities.
As federal Medicaid policy evolves, Californians deserve to know whether our state still embraces that principle with the same conviction.
Thousands of consumers and families are waiting for that answer.
I respectfully call upon the California Department of Developmental Services and the Newsom Administration to issue public guidance explaining how federal Medicaid changes will interact with the Lanterman Act, the Home and Community-Based Services waiver, and the Self-Determination Program.
Consumers should not have to speculate about whether the supports that keep them safely in their communities will still exist tomorrow.
Henny Kupferstein is a San Diego-based autistic psychologist and policy analyst for the Doogri Institute.
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