What Our Kids (Who Will Be Adults Tomorrow) Need: Listening Tour with Sen. Robert Menendez’s Staff

I just got back from a meeting with a Senior Advisor and a Legislative Assistant on the staff of New Jersey U.S. Senator Robert Menendez, and with five other parents of autistic children. I was the parent of the youngest child: The other parents had children who were 28, 20, 17, 16, and 11-about-to-turn-12 shortly. Parents of younger children—preschool and elementary school age—had been asked, but none had been able to attend a meeting.

It was an educational session for me, to be sure. Most of the conversation centered around the issues of housing and employment—about adult issues. As one mother put it, what our kids transitioning into adults need is:

• somewhere to live
• something to do during the day
• transportation

(Of course, there are many and more and more autistic adults who attend college, live on their own, work, and raise families; the children of the parents at the Listening Tour this morning—of myself too—have children who will need support throughout their lives.)

We’re doing a better and better job teaching children in schools, whose right to education is described in IDEA, it was noted. But then, in New Jersey, equivalent services and programs are not available for children when they reach adulthood, and there is a major (that’s an understatement, really) shortage of supported or supervised living environments for autistic adults in the state: There are over 3400 adults on an “urgent/priority” list for such housing. And, there is seemingly endemic confusion among state agencies (specifically the state’s Department of Developmental Disabilities) about how to evaluate autistic adults, and to fund and deliver the services they need.

A parent suggested that companies receive tax incentives for hiring autistic adults and also to keep them as employees. Other parents noted that there needs to be fair and competitive compensation for job coaches to support adults who need such supervision——and, too, fair and competitive compensation for all who work with autistic adults. This would also include staff who live 24/7 in group home or other a supported living environment: In one adult residential program in New Jersey that serves about 100 individuals, some $2 million per year needs to be raised to pay the staff, over and over government funding. I noted that one of the main reasons that my son has prospered in his current school district is due to the level of training, support, and supervision of the aides and other therapists in his school program; another parent noted that Bergen County Community College is starting a program to train teachers/therapists in teaching autistic students.

Other questions that came up: Can private funds be used to supplement state programs? Is it possible for a parent to provide health insurance through an employer for a child after the child turns 23? How can changes to Medicaid and the Community Care waiver system occur so that families can have access to as many funding sources as possible to help pay for their children’s needs?

I mentioned the NIMH’s Request for Information about autism research priorities and, in light of what I learned from the other parents, I have a better sense of what to include in my statement: We need research about what kind of models for housing and employment of autistic adults work best. We need research about how to fund these programs, and how private as well as public funds can be used. We need research about how to train, fund, and support “life coaches” (so to speak) who will live with those autistic adults who require such supervision, and who will assist them at work and in their leisure time. In New Jersey, an autistic adult is only “eligible” for services but not “entitled,” and a federal entitlement is needed.

A number of us went out for lunch and continued the conversation: I learned about more sports programs for Charlie, more about Medicaid, more about respite care and waiting lists, and was encouraged (that’s an understatement) to send Charlie to camp. “The earlier he knows he can be without you and your husband, the better,” the other parents told me. We talked about how it is mostly—totally—younger children who are featured in “autism awareness” campaigns and how it’s autistic adults and older autistic children whose faces need to be seen. (But little cute kids bring in more donations, someone noted that someone had mentioned at a fundraiser once……..)

It was in September 2007 that New Jersey’s Governor Jon Corzine signed the package of seven autism bills, one which established a task force to study issues concerning autistic adults—but nothing about this has since been heard. Back in October of 2006, New Jersey’s largest autism organization, COSAC, issued Meeting the Needs of Adults with Autism: A Blueprint for the Future, which outlines a number of issues pertaining to the housing and employment needs of autistic adults: It’s time to start pouring the foundation and start building. I’ve heard more than a few parents of young autistic children say that they did not want to think of these issues as it was too depressing—-but I felt emboldened listening to the other parents recount their concerns and their struggles, their love and their acceptance, and the patience, bafflement, and persistence with a lot of bureaucracy.

The other parents and I exchanged contact information: Do I have a lot to learn and lot to keep on advocating about. Wasn’t it just yesterday that Charlie was 2 years old?