Whether incidence is truly on the rise or medical professionals are just counting better, the number of developmentally disabled children is up. The map of milestones for developmentally disabled children is different, in some cases indescribably so. The ultimate milestone - reaching the independence of adulthood - is in many cases unattainable.

By most accounts, Delaware leads the curve on addressing special needs children. However, no matter how slowly, the calendar changes and the same children need continued services as they become adults. Opportunities for continued education and employment opportunities fade for special needs people as they age out of the school system at age 21. Opportunities for independent living are even more rare.

Parents and advocates of these citizens are poised to make 2004 a watershed year. The issue of post-21 needs is more than a whisper in the ear of several legislators and the state has settled a class action suit filed against Delaware for failure to provide for its special needs citizens.

“We need to approach this as political beings, unemotionally, as case workers for our own children,” said Kathy Graybeal, a Sussex County representative on the new legislative committee of the Autism Society of Delaware (ASD).

Remaining unemotional is a difficult charge for parents such as Graybeal. Her 16 year old son has never spoken a sentence to her. Severely autistic, completely nonverbal and formerly selfinjurious, Jonathan Graybeal is just five scant years from completing his education at the Sussex Consortium. Losing the safety and continuity of his school routine could amount to losing years of progress.

“I have been pushing for a legislative committee for years. We need to keep the legislators apprised of the needs of the community. Our legislators are so far ahead, even visionary in some cases, compared to those in other states on these issues. In all fairness, we probably have not presented enough in an organized manner in terms of the long term needs we are facing. We are organizing to be more proactive,” said Graybeal.

Legislative priorities of the ASD group include improving vocational training to career pathways and establishing more group homes with an educational component. They believe they can demonstrate savings to the state by providing opportunities for autistic adults to earn versus consume resources.

Karen Shaud, a board member of the Lower Delaware Autism Foundation (LDAF), supports that goal. “Our children can become taxpayers instead of tax drainers and that will allow the parents to work as well,” she said. While Shaud’s autistic daughter is well over a decade away from needing extended services, she and other parents are taking action now.

Many local businesses, such as The Movies at Midway and Hocker Manufacturing, currently work with the school system to have special needs students work part-time. However, essential components of their employment such as transportation and job coaching are no longer funded when the student graduates the school system at age 21.

The LDAF is currently investigating several business ideas for longterm employment that would accommodate varying degrees of ability, such as a printing operation or greenhouse business.

The ASD legislative committee is chaired by Rob Gilsdorf, whose 13 year old son is autistic. Gilsdorf acknowledges that the developmentally disabled population spans a broad spectrum and is interested in working with other groups focusing on garnering state resources to the benefit of all.

“We’d love to join or be joined. We realize we are not the only ones using state services and we don’t have a ‘me first attitude.’ You can’t have five groups doing that and have five groups succeed,” said Gilsdorf.

ASD hopes to be a significant voice in the current budget budgeting process and have requested a luncheon with the joint Finance Committee this month to state the case for increased funding as the number of graduates increase.

“An adult may be eligible for services but funding must be available to actually receive services,” said Theda Ellis, executive director of ASD. In Delaware, most special needs graduates have at a minimum received family support services such as a case worker and a day program. According to Ellis, a few receive residential services but the supply of independent living group homes is simply inadequate.

“The impact of more adults entering adult services will be significant. It cannot be handled by spreading resources just a little thinner,” said Ellis.

Planned community
approach an option
A fledging organization by some standards, The Lower Delaware Autism Foundation has made great strides since its establishment in 2001. Outstanding fundraising and strong parental commitment have propelled the organization to a place where they can envision a bright future for their children and others with a disability.

A vision of establishing a housing and recreational campus is a long term goal that is coming quickly into focus. The foundation has established a Long Range Goals Committee to work toward the foundation’s ultimate goal of building adult residential housing for the post-21 population to include dormitory-style housing, a common building for recreational and social use, many amenities and possibly a small business run by the residents.

“It is imperative that we, as parents, be proactive while our kids are young because, as of now, the services aren’t there. It will take years of advocating, pushing the government, raising funds and fighting for the funds necessary to run the daily operations of these facilities. It is not a process that will quickly evolve; it will take time and an enormous amount of effort,” said Dorian Kleinstuber, vice president of LDAF.

Kleinstuber’s son is high functioning and while she hopes he will escape the need for constant care, she recognize the importance of creating solutions for all as soon as possible.

“It just doesn’t make sense to have a school system this great for our kids and then cut them lose without a parachute. While they are in school, the kids are at the top of their game, every minute they are out of their productive routine, they lose,” said Rudy Beitzel, president of LDAF.

The group is considering farmland options in close proximity to Lewes or Georgetown.

Susan Kelly, a member of the committee, hopes the visions of the committee are realized before her young son graduates. At eight years old, he responds well to behavior supports but she and her husband Tom worry about his continued progress. She recalls mornings, preparing for school, that something peculiar will set him back into an unexplained world. “There are idiosyncrasies, maybe he couldn’t find his favorite toy lizard and it is a ‘bad lizard morning.’ There are not always explanations,” said Kelly.

Seeing her son thrive and have residential options are particularly important to her because the Kellys have another child, a nine year old daughter who has already brought up the scenario of having to care for her younger brother in adulthood. “It is just heartbreaking that she is discussing that at her age.”

Lawsuit settlement
an encouraging sign
Hope of expanding and improving services for those with disabilities is held out by the recent settlement of a lawsuit against the state for failure to provide for its disabled citizens. While the settlement awaits court approval, expected this month, the agreement is expected to yield 79 new community residential placements in 2005.

As a result of this agreement, The Arc, Homes For Life Foundation, Delaware People First, and the individual plaintiffs have agreed to withdraw the lawsuit which had been filed in Federal Court in April, 2002. The lawsuit was originally filed because of the number of persons on waiting lists for services and the often difficult time families had in trying to access services.

The state will also work with the plaintiffs to improve and stabilize state dedications resulting from reducing the Stockley Center and increase funding of community service agencies.

According to Bill Love, Arc director, the agreement is a positive step in bringing the state closer to fulfilling the needs of its special citizens. He said although most on the state registry of individuals with developmental disabilities are receiving some level of services from the State Division of Developmental Disabilities, usually vocational services and case management, many on the registry need housing. Most of those that do are living with aging caretakers who are increasingly unable to provide care for them because of their own medical or economic situation. As of August, 2003, there were 1385 individuals on the registry. One-hundred-seven of those individuals were urgent due to homelessness, safety issues or high risk and needing placement within three months.

“The remainder needed housing at some point in the future, including children of parents who are aging and ill. The registry does not even include those at Stockley who still need a community placement or those still in the educational system who will be transitioning out of educational services in the future. I have also seen estimates that up to 2000 Delawareans with cognitive disabilities are living with parents over 60 - a potential crisis as their parents continue to age,” said Love.

Editor’s note: In the next installment, state educators, officials and legislators weigh in on the issues, including the status of the Stockley Center. Also, learn about existing local opportunities and group homes for special needs citizens.