Adding Strands to an Autism Safety Net

Array of Proposals Would Help Adults

Christopher and Theresa Waddell have set up a basement playroom in their Arlington County home for their sons, Will, 9, Paul, 7, and Sean, 5, complete with educational games for the children's development. It's a comfortable room yet is distinguished by some of the special toys and activities for the older two. Will and Paul have autism, and the room is equipped with a special swing set and large rubber balls for their physical therapy.

The Waddells are doing all they can to ensure that their two sons with disabilities can have as productive childhoods as possible. But even as they juggle the here and now, as illustrated by the playroom, they are focused on the inevitable: One day, the parents will be unable to care for their children. How will their two autistic sons care for themselves?

This dual struggle is particularly acute for families whose children have autism, cerebral palsy and other ailments that do not classify the children as mentally retarded, which is determined in Virginia by an IQ test score under 70. Special services for this group of people is even more limited than services for those with more severe intellectual disabilities, making both the present and the future difficult to plan for many families.

"We're struggling with what this picture is going to look like when they do reach adulthood," Theresa Waddell, 43, said on a recent afternoon. A main concern, she said, is making sure housing, day centers and other support services are available for their children when they reach adulthood. Her husband is president of the Northern Virginia chapter of the Autism Society of America and has worked hard over the years to support families in the region who struggle with finding supports for their kids.

"It's never too early to start really planning this," she said.

Virginia provides services for eligible children who have conditions like the Waddell boys' through a Medicaid program known as the Individual and Family Developmental Disabilities Support Waiver, but unlike other services, the benefit is paid for with state dollars only, limiting its scope. The program provides group home placements, daytime support and respite care for parents. Money from counties and cities, which might be able to expand the program, is not available. As a result, while nearly 600 people receive the benefit statewide, 613 others were on a waiting list as of Aug. 21. It can take years to receive services.

To address this issue, parents such as the Waddells are pushing for the state to include people who have autism and similar conditions in the same funding structure as those with more severe disabilities, making more support available to them now and for the future. This would give adults with autism more access to group homes, day programs and other housing options. State officials are considering the change and are expected to have a solution about how to fund and manage services within a year.

"This is really an isolated group of people," said Nancy Mercer, executive director of the Arc of Northern Virginia, an advocacy and services group for families, children and adults living with intellectual and developmental disabilities. She added that although many autistic children go to regular schools through age 21, they often depend on their parents and family well into adulthood because options are so few in Virginia. Many adults with autism and similar conditions can work, but they often need transportation and housing support.

The uphill battle is one of many that parents with autistic children have to fight. One of the most prevalent battles is ensuring that school systems provide the array of services many children with these conditions qualify for under laws governing special education. Parents often sue school systems to ensure that the services are provided.

Parents in Northern Virginia also are focusing their efforts on pushing for more federal services. Congress is considering the Expanding the Promise for Individuals with Autism Act, legislation that would increase funding for lifelong services for people with autism.

The bill would authorize approximately $350 million in new federal funding for key programs related to treatment, intervention and services for children and adults with autism. The bill is awaiting action in a congressional subcommittee.

Congress also is considering an amendment to the tax code to provide for the establishment of financial security accounts for the care of people with disabilities. The accounts could be used for housing and medical and educational expenses for adults with disabilities.