It’s April, and therefore Autism Acceptance Month. We talk about how acceptance of and even respect for people’s Autisticness is important, not just for Autistics ourselves but for our communities. People have varied support needs, and respecting that and supporting access to having those needs met is an essential part of what we mean when we talk about acceptance. Community services and supports are for everyone, even though they can look very different for each of us.
A lot of the supports that non-disabled people need are already present (barring other forms of discrimination) just in how our communities are laid out. Not all of us have access to that though. We have further needs that will need met, or perhaps different ones, in order to make aspects of our communities accessible to us.
In my state, there is something called the Autism Waiver, designed to provide supports to people who might not be able to be integrated into their communities should they not receive supports. Because my state has an Intellectual Disability system instead of a Developmental Disability system, people like me have few options for receiving funded supports and services. This is one of the ways, and I’ve applied this year.
Last fall, after a few months living in my place, it started to become obvious that I needed supports. My mother has her own disabilities, yet once a month she has to come and help me clean my house, without pay, to keep my living environment safe. I don’t have the time sense or executive functioning to understand when different tasks need done, and I often need another person present to keep me on task or remind me what comes next when it comes to taking care of my house. This is doubly true when there are changes or interruptions- in those cases, it is all over with. Inevitably it reaches the point where I’m too overwhelmed to know how start on anything on my own, and I end up feeling trapped by it. At some point I stop being able to follow through on personal hygiene, too overwhelmed to do anything until my environment is re-stabilized. This process is one that has led to major medical issues on my past attempts at independent living. All this for want of just 4 hours a week support.
A friend told me I probably won’t get the waiver money, first based on his (incorrect) perception of how I am doing, then on the fact that there is a long list of interest with people in much more critical situations. He’s right about my chances on this second point. The Autism waiver is a smaller waiver, and there isn’t enough in the larger Office of Developmental Services budget right now to get all the people on the Intellectual Disability wait list the services they need. There isn’t money to re-appropriate, and expanding the budget for the Autism Waiver would require more funding for the Bureau of Autism services and for the ID services. So the “list of interest-” or as some of my friends call it, “the not-wait list list-” is long, and grows longer.
Some of the services and supports others are seeking under the waiver are certainly more extensive than mine. Some folks need one-on-one supports to be out in the community. Some people need assistive tech, including AAC, that they are able to have with them, rather than only in therapy or only at school. Some people even need the basic habilitative services already offered to people on my state’s intellectual disability waivers, but which their IQ score bars them from eligibility for.
My needs fall under informal respite. In addition to what I’ve already discussed, it could mean having someone who could go to the grocery store and other errands with me so that they can be completed even on my less focused or high anxiety days where sending me into the store alone is not productive. I also can’t transport myself, which presents further barriers. These things are different from habilitative in that they are skills I have but need support to follow through on them, whereas habilitative is seen as skills that need learned.
Under this waiver, in my state, I’d be allowed to hire family members who might not have been able to afford to provide these supports. This is a big deal, as family members do hit burn out like any other person who provides services. By treating them like any other provider of services in this respect, we can establish limits with our families because we don’t owe them everything for our supports. Obviously they will still have limits to what they can do, but the efforts they put forward can be balanced by this type of hire.
If I don’t get the waiver, I’m lucky enough that my sister needs child care and is open to bartering. It’s not as effective on making sure she’s reliable, though. It also presents a problem: I’m completely out of luck if I want to move someplace with more general community resources, be it a (in my case) synagogue or better public transit, if my sister doesn’t want to move to the same area. I might want very much to live in Pittsburgh or Harrisburg, PA, but because I’m currently reliant on unpaid support from family I am unable to do so. In turn, I’m further denied access to things that would provide accessible community involvement.
This is something many people, whatever support needs they have, deal with if they are entirely or primarily reliant on unpaid supports. You are, unfortunately, too often stuck living not where you want, but where those supports find convenient. While many people with paid supports are pressured into similar situations, there is at least a recourse process for them. But when your supports aren’t paid, and your level of support is such that you need a certain amount, the alternatives are not having meaningful access to the community at all.
Can we get on this, as communities? Can we work, together, to accept and ensure access to meaningful community inclusion, and the supports, formal and informal, that allow for that?
There are things, real, concrete things that we can do here. There are efforts out there already that just need our communities to back them, efforts on things like wait lists and funding freezes. Efforts that allow people with disabilities to pay their families or friends for their hard work as support staff. Efforts to ensure that our communities, friends, and families are taught not only what truly meaningful inclusion is, but also what is out there about how to do that.
We have steps we, as communities, can take to ensure this side of inclusion becomes a reality for all citizens. Let’s get to work.