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My Personal Introduction to Self-Direction for Special Needs

My daughter Talia who has autism has been having community habilitation for years through an agency. When my community habilitation worker, who is well experienced and wonderful with Talia, asked for a raise after having none since she started about four years ago, the agency said they can only provide a dollar more an hour, for $16, a dollar more than NYC minimum wage, for someone who needs specialized training and a lot of patience. I just happened to mention this to one of Talia's therapists who told me that another parent she works with has self-direction and that pays $25 an hour. I also found out it pays for other expenses. For example, I have been unable to get any in home respite forcing my husband and I to take separate vacations for years, but with self-direction, I would have $3000 a year for respite. I would also have funds for community outings. Of course, no one from the state ever informed me of this before.

Last Thursday, I learned my first lesson in self-direction. Talia's care coordinator emailed me to go to Bernard Fineson Developmental Center Building 12 for a self-direction informational session. I drove there to find an old padlocked building. I went next door to building 11. Building 11 was so decrepit that the door knob came off when I opened the door. There was no security and I freely walked inside to a facility for individuals with intellectual disabilities. I asked a staff where to go and he suggested building 72 and was polite and gave me directions. I found out that that building was closed too. I then saw a nice new building, building 80, and thought I would try my luck. When I walked in the security informed me I was in the right place and I attended the meeting. I guess the New York State Office of People with Developmental Disabilities staff made sure at least they had security.