Watch Out for Lite Waivers or Waiver Lite

Dohn Hoyle, Partners in Policymaking Faculty Member, Activist and Organizer

34. Watch Out for Lite Waivers or Waiver Lite

Some time ago I was asked to talk by The Arc in Virginia. I was asked to come talk about some of the things we had done, the things where we'd moved things, remember now I, whatever I've said, at some point the Arc Michigan hired me. And so no matter what their, what I'd call sketchy history was they decided I should help them.

So, The Arc in Virginia asked me to come and talk about, and their executive director said to me that there were people from the outside coming in and working with their department on a waiver to help parents. So I asked questions enough to figure out what was going on. And when I talked, I said, you need to be aware of those kinds of things that are halfway steps. That, what they're really doing is indenturing parents to providing services basically until they die to their sons and daughters.

The principle should be, as is stated in the preamble to our waiver, people should grow up in families as children. I believe in permanency planning, and children belong in families. With whatever supports are required, and if it can't be the biological family, then it needs to be another family that they grow up in. And I also believe that they should live apart as adults, and that parents should have the opportunity to support their child living apart from them, whether they have a disability or not. And that should be an important part of moving into adult life, is at some point you live apart from your parents, as an adult, and your parents are supportive of that. And, that's what should happen.

I don't believe that parents should be indentured through the payment of some kind of money. a pittance usually to continue to provide services to their son and daughter for the rest of the parents' lifetime. I don't like the idea that a child doesn't live apart from their parent till the parents die or can't care anymore. I don't like the idea of having both those bad things happen at the same time. You lose a parent and you lose your supports and you have to move and everything all at once.

I think that person, just like any other person who doesn't have a disability, should get to live apart and feel the support of their parents living apart from their parents first. And then when they lose the parent, it's more natural and it's not disruptive to every part of their life. But I also think it's unfair for parents who happen to have a child with a disability to now be told, okay, here comes some additional money to help you for the burden you have.

But by the way, there's no end to that burden in your lifetime. That just seems to me to be grossly unfair to both the person with a disability and to the family. And it seems to me to be a cheap way out for the state. who ought to be looking instead at, how do I make this as generic, as typical as possible. rather than the exception. Back sometime ago, people proposed host homes in Michigan. Where someone else would get paid to take in this person with a disability as a member of their family. and treated like the other children in their family. Adult children. And take in this person who is gonna be staying with this host family. Even while the other children left.

Well, again, that's infantilizing, among other things. It's the opposite of, it's the opposite of what we should, or ought to expect for people as they grow older, as they age. This waiver lite lets the state off the hook. But when you have big waiting lists, I suppose it says to them, well, we can claim our waiting list is smaller now, cause we have these people on a waiver. I guess it says to them, well this is sure a cheap way out. Without having to provide whatever services the person needs to live in their own place. And seek employment and all the rest of it. I just, unfortunately in Virginia they did adopt it anyway. And some people who supposedly are advocates on our side were responsible for some of that.

And I see it in many other states as well. people being offered a pittance. And of course that's better than not getting anything, in their eyes. but it also means, here's a new income source that's hard to lose at some point. And so, there's the revenue coming because you keep your son or daughter at home. it's tough to give up too. It sets up the wrong, it sets up the wrong expectations on everybody's part.