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.