Autistic Self Advocate Speaks at NY Assembly Autism Forum
Robert Deemie delivered the following comments at the Assembly Republican Regional Forum on Autism Awareness. He is currently in the process of setting up a local chapter of the Autistic Self Advocacy Network in upstate New York. He is an adult on the autism spectrum working for the Southern Tier Independent Living Center.
Testimony, Assembly Republican Regional Forum on Autism Awareness, April 21, 2009
There are two important issues that I would like to discuss today:
- services provided to adults with autism and
- the terminology associated with autism.
Currently, the Office of Mental Retardation and Developmental Disabilities has a pilot project in place to create four group homes around the state for 32 autistic youth, aged 14 to 18. They plan on putting eight people in each group home, when current practice is no more than four. I cannot imagine what a house with eight people on the spectrum will look and feel like for the people who are placed there. Based on how effective these group homes are a decision will be made on building more. As a person who has Asperger’s and who works for an Independent Living Center, this project is far from what is actually needed. Not only does there need to be greater effort from OMR/DD to provide individual (and sometimes intensive) services in the home, to keep kids in their homes, but the community based services provided to adults with Autism need to be funded. Services that target adults with autism are extremely limited and extremely hard to access. OMR/DD says they want to provide a continuum and group homes are part of this continuum, but the waiting lists paint another picture.
Our region has very long waiting lists for various services (day-habilitation without walls, respite, residential habilitation, Community Support Services to mention a few). We just heard last week that there are no funds for Support Brokers, the people who help families write the plans for Community Support Services, those individualized, community based services designed to help people survive in their own homes. Since OMR/DD has placed their priorities and dollars on group homes and institutions, what are the costs facing individuals and families? What are we asking them to give up? Congregate settings deny people with Autism their civil liberties and expression of free will. I work many hours every week assisting people who are trying to get out of these congregate settings and their stories are chilling. A terrible burden has been placed on parents. What parent wants to send their child to a group home or institution? Not any parent I know. What they want is for their children to be able to live their own lives in their own homes near their own friends. This is not accomplished in a group home that may quickly turn into 8, or 16 or 32 or more group homes if the “research” shows it can work. We have lots of research from other states that have shown that it doesn’t work. There are thousands of children on the spectrum growing up in NY; do we plan on putting them all in segregated, congregate service settings like this? That is a very scary thought. These are questions that I want to have answered.
Onondaga Community Living in Syracuse is supporting over forty people in their own homes (several had severe behavioral issues and autism). We have a working model here in the state. To my comments I have attached the story of the Jay Nolan Community Services Agency in California. They converted over thirteen group homes for people with autism into individual residential services. Their architect, Jeff Strully, travels the country teaching others how to do this. We do not need research in how to create a new wheel. We merely need to look at those who have created a working system from a vision we can all share.
So my recommendation to this committee would be to stop funding research into countless therapies and start funding programs that directly impact peoples’ lives. Will your research dollars help people find employment, their own apartments, or learn the independent skills all adults need to learn? Will the ongoing dollars be available for supporting people so they can live independently after they find a place to live and a job? We are raising a generation of children to be incredibly dependent on other people, because so many have their very own teacher’s aides in school shadowing all their decisions and all their actions. At what point do we trust people to learn how to make their own choices and learn from their own mistakes?
As I was writing this I found that the English language doesn’t have the words to describe the thoughts and emotions inside my head. I am reminded daily about how we as a society talk about autism. There needs to be less talk about how autism is a disease and an epidemic; how unless treatments are available for autism the person’s life is less meaningful. And there needs to be less discussion about what people can’t do. What needs to be done is more talk about what individuals can do and how autism is life long. In the current climate autism is thought of as a “thing” that unless treated early will never improve. This is not true; I stand before you as testament. I succeeded without being put though special “autism treatments.” Autism is a developmental disability that a person will have for their entire life. As long as we keep deluding ourselves of this fact and don’t start providing services around the lifespan of a person, we are only going to be seeing more people going into institutional settings. This is the greatest tragedy of all because we are the last people asked. We are the experts. Involve us in the decisions that will be made regarding how the limited dollars will be spent. Our country was founded on everyone having a voice. Please hear ours.