Developmental disabilities are generally recognized to be disabilities that begin prior to age 18, affect the person's day-to-day functioning, are expected to last indefinitely, and are not strictly medical or psychiatric in nature. Thus, while conditions such as vision loss, muscular dystrophy, depression, or hearing loss are clearly disabilities, they are not considered by most to be developmental disabilities.

And, while many of those we at Regional Center of Orange County serve have dual-diagnoses (persons with two conditions), only developmental disability criteria are considered for eligibility for state-funded Regional Center services. So, for example, the State of California excludes services for those who have only one of the following: learning disabilities, psychiatric disorders or deficits resulting from psychiatric disorders or their treatment, and physical conditions that are acquired and not associated with neurological impairment.

These exclusions highlight one of the major differences between eligibility for developmental disability-specific benefits and eligibility for public school special education, which is governed by the federal Individuals with Disabilities Education Act (IDEA) and covers a much broader and much more diverse range of disabilities.

ELIGIBILITY FOR SERVICES AND SUPPORTS

In California, where I live, children and adults with developmental disabilities are entitled by state law to needed services and supports – regardless of family income – throughout their lifetime. This is different from many other U.S. states, which do not guarantee services for those with developmental disabilities. In those states, residents may only be entitled to specific services that can be paid for with whatever funding that state receives from the federal government, primarily through Medicaid.

Also, eligibility criteria for California's state-funded services are written in state law. Being a resident in our service area and being diagnosed with a developmental disability as described above, is not enough on its own. Currently, our law also requires that the person exhibit substantial disability in three or more of these key developmental categories:

This critical distinction can be especially confusing and often frustrating for some families, since a child with special needs likely does receive services and supports through their local public school – regardless of where in the U.S. they reside.

PARTICULAR CHALLENGES OF AUTISM

At this point, you're probably already seeing how these sorts of definitions and eligibility criteria can pose particular challenges for those with autism. Since it's a spectrum disorder, autism can manifest in dramatically different ways in different individuals. As many of us often say: "If you've met one person with autism, you've met one person with autism!"

Even among those who meet the eligibility criteria and receive state-funded services and supports, we see enormous variability in

service needs. Since the law we follow requires that all services and supports are provided according to each individual's particular needs and circumstances, even those with similar diagnoses and of similar age may receive very different service sets. For example, one young adult with autism may be ready and eager to begin living independently while another – for personal, cultural or other reasons – prefers to continue living in the family home.

WHEN IN DOUBT, ASK FOR AN ASSESSMENT

Since definitions, eligibility criteria and program limitations can vary greatly from place to place, we always encourage parents to inquire about getting an assessment for their child – both minors and adults -- before assuming they don’t qualify for services and supports. It is especially important to assess children as soon as there are any concerns about their development because early intervention has proven lifelong positive outcomes. Also, in cases where a professional assessment indicates a child does not currently meet eligibility criteria, it’s important to remember that determination is not necessarily permanent or unchangeable. An individual can be reassessed at a later time.

"It is especially important to assess children as soon as there are any concerns about their development because early intervention has proven life-long positive outcomes."

This is key because program eligibility criteria can evolve and new programs can be introduced to address newly-recognized concerns or trends. In California, for example, eligibility criteria for Regional Center services is not as stringent as it was only a few years ago. And just this past year, we implemented what’s called “provisional eligibility” for three-year-olds exiting the Early Start early intervention program. Now, those youngsters who don’t quite meet eligibility criteria for ongoing services, but for whom concerns remain, can continue to receive services under provisional eligibility, until their fifth birthday.

Certainly, our hope is that every child in early intervention closes the developmental gap and no longer needs our services after Early Start, but we want all parents to know they aren't alone. Even after age five, if a child with special needs doesn't meet the state's eligibility criteria, our Regional Center and perhaps some others, are able to provide support and guidance about other free and low-cost resources. •

ABOUT THE AUTHOR:

Larry Landauer is Executive Director for Regional Center of Orange County, the private, nonprofit organization contracted by the State of California to coordinate lifelong services and supports for nearly 24,000 Orange County residents with developmental disabilities and their families. The Regional Center is the first stop for those seeking to obtain local services and supports to help them live safely and with dignity in the community. Developmental disabilities include intellectual disabilities, autism, epilepsy and cerebral palsy. Learn more at rcocdd.com.