Story and photos by Jennifer Gledhill, Search's Community Inclusion Coordinator
We’ve made a lot of progress in the last few decades in how we honor the rights of those with disabilities in this country. As recently as 1986 it was hugely controversial when Search opened its first group home in Chicago. Folks with disabilities? Living in regular houses? In regular neighborhoods? How would that even work?
Fast forward to 2018 and it’s no big deal to see a group of adults with disabilities sharing a home down the block. (Heck, a Search ‘family’ is a pretty great neighbor to have if you think about it. No wild parties on Friday nights, immaculate lawns, and always a friendly wave back if that’s your thing!)
But as far as we’ve come, those of us who work in the field know there’s always more to be done to offer folks a life lived at the level of independence wholly dictated by each individual’s abilities, dreams, and personalities.
Thanks to the tireless work by advocates across the country, the federal government now recognizes the need for even more freedom and choice, and is doing its part to push the envelope even further towards authentic inclusion for individuals with developmental disabilities.
The federal Centers for Medicare and Medicaid Services (CMS) have developed new requirements for agencies like Search to receive funding. The Home and Community Based Services (HCBS) Final Rule is the newest set of guidelines from CMS. These guidelines apply to community homes (known as Community Integrated Living Arrangements or CILAs) that are run by Search and other agencies. While many quality agencies already follow some or all of the HCBS Final Rule principles, the sum of its parts is a game-changer.
In May, Leanne Mull from The Council on Quality and Leadership visited Search, Inc to share the good news with about 50 individuals at the Kensington site in Mt. Prospect.
Some of the bullet points were old news, like the rule about privacy. Many in the room were were already aware of their right to privacy in their own home. Heck, that right is listed in the front of the handbook that every new resident receives when they come to live at Search.
But what was surprising to many was that they will eventually be given their own key to the front door. Just that simple tweak can change one’s address from “group home” to ….. “home.”
And it got better:
“You should have the freedom to furnish and decorate your room or house within the limits of the lease or other agreement.”
“You should have access to the internet.”
“You should have access to a TV, and watch it late as you want.”
“You should have access to food and drink whenever you want.”
“You should choose your own goals.”
To you and me, these may seem so obvious: trivial, perhaps. But even agencies with the best intentions have historically leaned so heavily into caregiving and safety that some of the simplest hallmarks of independence have been overlooked.
Until now: the CMS has given every state in the country until March 22, 2022 to make it happen.
It won’t be easy, mind you. It’s never easy to break with tradition, especially when agencies are forced to run on shoestring budgets. What may seem incidental to some can be a puzzling budget line for a non-profit.
But budgetary challenges are nothing new to social service warriors. The only people who want to see these freedoms granted more than Search, Inc staff are the folks who were in the room listening to Leanne paint a beautiful picture of the (very near) future.