Issue: Fall 2007

Growing Up, With Help

(Page 4 of 5)

New Jersey Takes Legislative Action

A lack of housing is one of the primary problems facing autistic adults who cannot live on their own. His mother explained that while his group home is in good condition and staffed by caring and responsible managers, she has seen homes and job environments where the staff is negligent or impatient and the facilities are in serious disrepair.

“It was rocky sometimes,” Pamela said about Young’s transition into adult autism services. “A couple months ago he was having extreme high anxiety, because the people at school were being very negative with him. They weren’t following his behavior plan.” She explains that often, the staff at schools and workplaces for the autistic are not adequately trained, and that the people who worked with Albert failed to follow the detailed schedules and goals designed to regulate his behavior.

“It’s a hard job, you know,” Ashley added in reference to those who work with developmentally disabled individuals. “And I don’t think these people get paid enough.”

The new legislation aims to correct such staffing inadequacies, especially for school-age children. It stipulates that all public school educators must be familiar with and equipped to handle autism in the classroom, and that a condition of certification for educators will be training in autism awareness.

But there are problems with legislation that focuses on children. Advocates like Paul Potito, executive director of the Center for Outreach and Services for the Autism Community, in Ewing, say that services for autistic adults in New Jersey are largely inadequate because the majority of funding for autism programs goes to education and development for children, at the same time that many New Jersey residents with autism are aging out of the public school system.

“Most of the time, energy and money is spent in early intervention and for people of school age, so adults really fall into a black hole,” Potito told The New York Times in March, adding that “tossing people into workshops and hoping it works” is not a sustainable policy for maintaining a high quality of social services for autistic individuals.

Kristina Chew, a mother of an autistic 10-year-old son, writes a Weblog called Autism Vox and prepared testimony in favor of the new legislation to be presented to the Assembly. She wrote that she worries about her son’s future after seeing some of the facilities for autistic adults.

“The adults were usually sitting at tables or in front of a video in the large warehouse-like space,” Chew wrote of the day program for developmentally disabled adults she visited on several occasions, “For the most part, they were not being engaged by the staff; the atmosphere was quiet and grim. I strongly hope that an Adults with Autism Task Force can propose and advocate for improvements in programs and services for adults in New Jersey.”

One bill awaiting hearing by the Assembly targets the dreaded waiting lists for housing, on which Albert Young sat for months before being placed into an appropriate living situation. It would provide $5 million to develop residences for DDD clients on the waiting list, accommodating between 50 and 80 of them.

But even with an increase in the number of residences, the problem remains that maintaining quality in the staff of these group homes is difficult, and there is the additional difficulty of assuring that roommates will be compatible in the severity of their disorders and their functionality.

“Garret: he’s really a problem,” Young said of his younger roommate in the group home, “He doesn’t listen. He still hits me. He shouldn’t be in the house with us because really he’s low-functioning and he always makes trouble.”

Garret is supposed to be assigned a staff member from DDD who supervises him at all times. Young frowned in annoyance and said Garret’s one-on-one worker left months ago and that a replacement still has not been appointed by the state.

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