Recently I had the opportunity to be part of a local delegation of parents who have adult children with severe cognitive disabilities. We met with the executive committee of our state’s Board for People with Developmental Disabilities. They’re a state agency receiving some Federal funds charged to make recommendations on service delivery, offer resources, hold conferences, etc. Considering new federal CMS regulations and the Workforce Innovation and Opportunity Act soon to be signed into law, there’s talk of phasing out center-based workshops and day services.

All of us are in favor of work at a competitive, living wage for all, no matter whether the person has a disability or not. All of us are in favor of full inclusion of everyone in community life. But the devil is in the details, as usual. Some people because of disabilities will never be able to work and earn a living wage, but may be able to do some work tasks slowly or with a lot of help. Some may not be able or willing to volunteer in the community. If work and preparing to work are the only options available, I fear that these folks will be shunted aside and not have a place to go and things to do.

When states get rid of sheltered workshops (as such services used to be called), they do so for many good reasons, and e.g. they were poorly run, warehoused participants and didn’t move people through the service to competitive employment where possible. There may be bad programs in Wisconsin, but the local ones I’m familiar with are well run, staffed by caring individuals and do help people move on to real jobs in the community if possible. Just like in every community, there aren’t enough real jobs and sometimes the community does not want to embrace a person with major disabilities in their business, their church or neighborhood, etc.

It reminds me of de-institutionalization of the mentally ill in the ‘60’s. We thought the money and services would be delivered in the community. Sometimes that worked well but sometimes people fell through the cracks and did not get needed mental health services. Nowadays we have high rates of people in prisons, jails and living on the streets with mental health issues. So many people are better off because of de-institutionalization, but some aren’t. I fear by closing all work centers/sheltered workshops we may do the same thing to another group of vulnerable individuals — people with severe cognitive disabilities.

So I went to a meeting with several awesome parents who wanted to lobby for a continuum of services, not just for their loved ones, but also for other people’s adult children with cognitive disabilities. Our pleas were met with statements like: “Our hands are tied” and “change is hard”. We didn’t get a meaningful discussion of how we can work together for good services for all. But I’m betting these activist parents will have more discussions with their legislators and other state agencies and won’t quit until they do get some real help from their government.

Maybe they’ll nudge services into looking at options other states have found useful. A friend who works in Washington told me that “In Washington, we have a service called ‘Community Access’ for people of working age whose barriers to employment cannot be overcome by the system. When I was county manager of a community access program in an extremely rural area, what we did was identify the person’s gifts, contributions, and interests, find the kinds of resources and activities that were available in the community, and connect people to those resources and support them to be successful in them.”

It was a privilege to labor alongside the parents even though the particular disability they’re dealing with is different from mine. I was blessed to have parents who advocated for my needs to be met. It’s only fair that I carry that forward for somebody else’s kids.