Hardy Plumbing
May 03, 2006

Advocates Resolved To Empower The Disabled

A single day can deliver a series of hardships enough to enfeeble even the strongest person. For most people, luckily, these days are atypical. For others, however, overcoming adversity can be an unremitting challenge — without the proper help, that is.

Those touched by developmental disabilities are no strangers to pain. Scarce resources, un-navigable entitlement programs, and the stigma of being disabled only compound the problem.

In the spirit of alleviating these conditions, the East End Disability Associates, Inc., in conjunction with several other service agencies, including the Child Development Center of the Hamptons, commenced the Developmental Disabilities on the East End Day of Awareness Conference on Saturday at Southampton College.

The inaugural event was inspired by Abby Irwin, who was a passionate advocate for people with developmental disabilities and whose own son struggles with Asperger's Syndrome, an autism spectrum disorder. Irwin died from cancer two years ago to the day the conference was held.

Seven workshops were held throughout the daylong affair. Seminars offered tips on obtaining early intervention and pre-school services for children with disabilities, negotiating the educational system and transitions through schools into adult systems; adult programs and services; understanding benefits and entitlements; diagnosis, treatment and interventions for autism; how to advocate; guardianship; health care proxy and special needs trusts.

The roughly 200 people in attendance were also encouraged to sign up with East End Disability Associates.

Ken Miller, the Associate Director of Clinical Services at EEDA, said that in addition to apprising individuals of the services available to people with developmental disabilities on the North and South Forks, the conference also helped service agencies learn what else residents need.

The resources for people with developmental disabilities, such as after school programs, are slim, he said. Joy O'Shaughnessy, Associate Director for Resident Services at EEDA, agreed.

"We have an afterschool program in Westhampton Beach, a therapeutic recreation program, and we have kids coming from Orient and Montauk," she said. "There might be other programs but they might not be able to handle children with developmental disabilities as well."

Another demographic in need of more assistance out east is the young adult population, who age out of school systems. After turning 21 years old, young adults have only scant day programs on hand, and getting around is difficult because many are unable to navigate without assistance.

"And then as far as socializing for adults and young adults, there's nothing . . ." said Miller.

The conference proved informative for many parents who were simply unaware of the services they could tap into on the East End.

One parent, who wished to remain anonymous to protect her child's identity, said that until recently, she has not had to worry about how to care for her son, who has Prader-Willy Syndrome, a genetic disorder marked by cognitive impairment, poor muscle tone, behavior problems, obesity, and mild to moderate mental retardation. In August, he will turn 19, aging him out of Child Health Plus, a U.S. Department of Health program that provides children with affordable health insurance.

"I've never seen a coordinator because he's always had wonderful health care. I've always been very proactive on getting the best doctors I can get," she said. Now his needs are changing. "I need to be educated on what I can do for him now that he's getting older." Her son could be eligible for Family Health Plus, the adult counterpart, or for Medicaid.

People with developmental disabilities and their families are not the only ones struggling. Service providers encounter many obstacles that frustrate progress, from neighbors opposed to group homes to poor coordination between agencies, the government, and the disabled.

At EEDA O'Shaughnessy provides housing opportunities for people with developmental disabilities as they become adults. The agency has placed more than 30 people in apartment programs known as Individualized Support Services. Individualized Support Services are designed for those who do not need around the clock care but do need to learn the basic tenets of independent life, such as how to balance a checkbook and keep a tidy home. EEDA also has three group homes and is opening up a fourth in Baiting Hollow, to no small amount of controversy.

"[Neighbors are] afraid that people moving into group homes are sex offenders or drug addicts, so they don't really understand that we're just working with people who are developmentally disabled with things like mental retardation and autism, and so there's this fear because they don't know," said O'Shaughnessy.

Keeping the lines of communication open among all interested parties can also be tricky.

"[What] we're really working hard on is a collaborative effort to try to have everyone from the district level to the national, [and] state level . . . to be really involved in trying to work together to make sure people succeed," said Helene Fallon, a parent advocate on the East End and the disabilities service coordinator for the town of East Hampton. "Everybody thinks they're doing the best they can . . . so one of my goals in my work is to try to teach our community, to teach our school district, to teach our government officials . . . to work with [people with developmental disabilities], to understand what they really need."

Ensuring that a person with developmental disabilities is properly serviced from childhood to adulthood often leads to success, Fallon said, "they can be self-sufficient and they can be very valuable parts of our community."

Certified in elementary education and special education, Irene Morsch has several success stories about children who have flourished in the right programs. Morsch works with kids in grades kindergarten to fourth who are either non verbal, have limited speech, or who are higher functioning but require academic support.

Morsch, a speaker at the conference, discussed the success families have had with the Picture Exchange Communication System, a modified behavior analysis program for nonverbal children.

"Because they have the communication skills, they can now get involved in situations socially that they couldn't get involved in before," she said after her presentation. "They can communicate with their teachers . . . also the fact that they're not disruptive, now other students and other adults will come and approach them because they don't feel threatened" by sudden outbursts or uncontrollable acts of violence on the part of the physically disabled.

Clearing obstacles and creative thinking come with the territory in caring for the developmentally disabled. And while services on the East End may be emaciated, progress is on the horizon, as information becomes more readily available and advocates continue blazing the trail.

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