It is estimated that about 1 percent of the world’s population lives with autism. The prevalence of autism spectrum disorder in Asia, Europe, and North America averages 1-2 percent. The Centers for Disease Control and Prevention (CDC) estimates that 1 in 59 children in the United States (about 1.5 percent) fulfill clinical criteria for an ASD diagnosis. When you add in the number of children who have other intellectual or developmental disabilities, that’s about 1 in 6 children (or about 17 percent).
That’s a lot of children — children who grow up to be adults. The developmental, behavioral, psychosocial, and medical services these children require are expansive — and expensive — and are, more often than not, needed throughout a lifetime. Because American society decided long ago to shoulder the burden of providing the funds to pay for all these services, collectively, these children, by and large, receive the services they need. However, unless their families receive a “consolidated waiver” from the state in which they live, government funding for support services and staff runs out at age 21. Kate Giammarise says the 21st birthday can be an “unhappy milestone” for a Pennsylvanian with autism or other intellectual disabilities:
Until age 21, the care they receive, such as behavior and occupational therapy, is considered a federal entitlement — that is, Medicaid has to pay for it. At 21, that entitlement ends, which can lead to a “cliff” effect of a sudden cutoff of services and being put on a waiting list until additional funding is available. There are more than 13,000 people in Pennsylvania on a waiting list for intellectual disability services — there are more than 4,500 on the emergency waiting list.
These waiting lists will only grow as the number of children receiving intellectual, physical, special educational and vocational services increases. Unless citizens agree to bear these added costs throughout the lifespans of disabled Americans, and unless legislators find the political will to fund these services, tens of thousands of adults will be left standing on the edge of the “cliff”:
Advocates have pushed for years for the governor and state Legislature to fully fund services and have succeeded in driving down the number of families on the waiting list. However, at a state Capitol hearing in September, Pennsylvania Department of Human Services officials said they will not be able to fund additional spots to take individuals off the waiting list this year.
Several state legislators said they believed $6.5 million from the state budget they passed in July specifically was appropriated to move 250 people off the waiting list, in addition to 700 graduates from special education programs.
Ted Dallas, state Department of Human Services secretary, said the cost of providing care to people currently receiving services has increased, and that last fiscal year’s budget left him with a $21.6 million shortfall for services that had already been provided.
Children with disabilities become adults with disabilities. They are people, too — family members, friends and neighbors, acquaintances and strangers — people who need our help. Eventually, they are all of us when we become disabled ourselves with physical or psychological infirmities which result as one gets older or sick, less flexible and tolerant, more frail.
We’ve all got something that disables us now, or will later. No one’s perfect. We all need to help each other, don’t you think?
More about what happens next when autistic kids age out of their support systems from May 2015 on The PediaBlog here.