In my humble opinion, we should be most concerned about life-long services for the disabled, and how they are determined.
1. There should be a list of life-long, immutable disabilities so those with these disabilities are not periodically forced to prove they have them. In my situation, I have been forced to allow psychological testing to prove my son still (yes, still) has Down Syndrome. Doctors records were not accepted by Social Security (where staff told me DS “could go away or get better”). Now, I’m dealing with OPWDD, same issue.
2. There should be a shared data base for personal info, with your agreement, so one agency can get info from another, again with your signature.
3. Disabled/ Parents should be involved in bureaucratic protocol involving disability issues. Not sure at all what personnel in gov’t agencies know about anything.
4. Many of the same problems exist in dealing with insurance companies.
5. Not personal, but educational decisions often make no sense – ex. I personally was diagnosed with JRA at age 7, when I was out of school, I was too sick to do school work. Rules for tutoring only allow help when you are out of class, not when you return. When you’re out you’re too sick to benefit.
The list here could go on and on, and we need to get these issues out to Congresspersons and State Dept. of Ed. Make your voice heard, and, above all, vote.
