Adult Years: Getting Services

A Regional Center is a private, nonprofit agency that is contracted by the state of California to provide services to people who have developmental disabilities.  Regional Centers receive their funding from the state of California and from private donations.  There are 21 Regional Centers that serve approximately 220,000 developmentally disabled children and adults in California.  The Lanterman Developmental Disabilities Services Act of 1969 is the law that spells out the rules and regulations that all Regional Centers must follow. Governed by their own board of directors, each Regional Center must abide by the Lanterman Act as well as adhere to their specific contract with the California Department of Developmental Services (DDS).

There are four specified diagnoses – Cerebral Palsy, Epilepsy (seizure disorder), Autism, and Intellectual Disability – written into the law that are “automatically” eligible to receive services if they meeting the State’s criterion of a “substantial disability” defined as having “significant functional limitations in three or more of the following areas of a major life activity:

  1. Self-Care
  2. Receptive and expressive language
  3. Learning
  4. Mobility
  5. Self-Direction
  6. Capacity for independent living
  7. Economic self-sufficiency

A “Fifth Category” for eligibility includes “disabling conditions found to be closely related to intellectual disability or to require treatment similar to that required for individuals with intellectual disability, but shall not include other handicapping conditions that are solely physical in nature.”  Many children with PWS will meet the criteria for Intellectual Disability, a few will meet the criteria for Epilepsy, and the remainder of individuals with PWS can successfully be argued to meet the Fifth Category of eligibility. (Many years ago PWCF advocated California legislature to include PWS as an automatic eligible condition, but the then-Governor vetoed the bill.  When the “climate” is right, we will once again pursue amendments to the law to include PWS.)

Many Regional Centers mistakenly inform parents that Regional Center eligibility terminates when the child turns three years old because the school district “takes over” or that the child has “graduated” out of the Regional Center system.  While it is true that Early Start early intervention services end at age three years when the school district takes over responsibility for providing services that relate to the child’s educational needs, individuals with PWS may absolutely be made eligible to continue to receive Regional Center services.  It is never too late to apply for eligibility.

Families are encouraged to get a copy of the easy-to-read book Rights Under the Lanterman Act, written by Protection and Advocacy, Inc., and the Department of Developmental Services publication titled, A Consumer’s Guide to the Lanterman Act.  The links and contact information for these books and organizations are listed at the in the side margin.  Stay informed of the laws; don’t let your adult or your family be denied services you’re entitled to.  You are your adult child’s best advocate and PWCF can help you advocate.

Up to your child’s 22nd birthday they should be eligible to continue to receive educationally-related services through your school district if they have not received a high school diploma. Once the school district terminates services, either at age 22 or upon issuing a diploma, the primary source for services is the Regional Center. Your adult child should have annual Individual Program Plan (IPP) meetings to determine what services are needed. Below are examples of some of the services that might be provided to adults:

  • Assistance accessing community resources or entitlements such as SSI
  • Day Programs
  • Supported Employment
  • Supported Living Services
  • Residential Care Home Placement
  • Adaptive Skills Training
  • Competency Training (for court-related issues)

Of course, just as with younger children, there is always the option to privately pay for services as well.

Make Connections | Get Support

PWCF has a host of parents to support and help guide you, in-person share and support groups, and links to online support groups. Click Here for Individual Support and Support Group information . You never need to feel alone.