Death by waiting list.

The waiting list for people with disabilities to get an IDD waiver from the state has more than a thousand people on it. It takes about 4-5 years to be approved. Children with autism miss their best chance for early treatment--waiting. It’s not uncommon for people to die waiting.

“We don’t need people to tell us what we need. We know everything we need to know. It’s happening to us,” Delmar said.

“I bet you love your wife, but you probably don’t want her to go everywhere you go. I have to have someone with me all the time… People don’t value freedom like they did when I was a kid.”

Federal law (the Olmstead Act of 1999) promises people with disabilities the opportunity to live in the least restrictive, most integrated setting available. But state government ignores this directive, and gets away with treating people with disabilities as less than human.

The demands are humble:

  • Give us freedom of motion–the ability to be alone sometimes, to never be forced to have a roommate in our own homes, to choose less expensive home care instead of institutionalization.
  • Clear the waiting lists–IDD and Age and Disabled–so that our friends don’t die waiting for the help the law requires.
  • Pay the people who take care of us a fair wage (one Direct Service Professional we met is still making the $8.75/hr minimum wage after 4 years).

Finally, Delmar asked, “Do not, do not forget the people with disabilities.”

No single politician can do everything that must be done on behalf of people with disabilities. If we want a government for people with disabilities, we must have a government of people with disabilities: We must have people with disabilities in our legislature. We must have people with disabilities serving on emergency response teams and regional task forces. We must have people with disabilities serving at the highest levels of the executive branch.

See some of the plans to address these issues:
Platform Plan by people with disabilities