If you want a glimpse of how people with intellectual and developmental disabilities are regarded relative to our American human services system, you need only look at what happens when an organization chooses to close a group home.
The current state of things
It’s important to understand that group home closures have become increasingly common in recent years for the simple reason of cash flow. Few families can afford the private pay rates necessary for housing and daily living support, so the vast majority of people with intellectual and developmental disabilities who live in group homes receive Medicaid funding. That money is paid to the provider agency but, at present, the amount is inadequate to provide quality services. And it’s not getting better. Staff who work in group homes account for the largest expense and they are not paid well. In fact, a 2017 study found that half of direct support staff nationwide receive government benefits themselves because their pay places them below the federal poverty level. Unsurprisingly, staff turnover is very high and the national shortage of qualified workers is critical. The end result is that provider organizations tend to eliminate programs (i.e., close group homes) that no longer break even.
What happens to people?
Organizations whose public relations rhetoric has included the “this is your home and we’re all like family” narrative can find themselves making decisions that very negatively impact the lives of those who, just yesterday, were the heart of their mission. So what happens to the people whose lives have just been turned upside down?
- Some move back with family. For many reasons, this is not a popular option. There may be no family to “move back” to, or it’s just not practical to do so. There is also the matter of seeking personal care, employment, or day services programs. The disappearance of a consistent provider can mean that people find themselves back on what are often very long waiting lists for services.
- They can trust the state, counties, or managed care organizations to find them a new place to live and receive services. They will be placed in a situation similar to the one they are leaving behind, but their community, their home, their roommates, and their personal care providers will all be different.
- They can be sold. And if that language strikes you as hyperbole, consider the practical reality. One organization, in effect, says to another, “We have a fully furnished house, occupied by 4 (or more) individuals, each of whom currently receives $XX/day in Medicaid-related funding to pay for housing and personal care services. Also, because the home is currently staffed with people who will no longer be working for us, they may be available to work for you — if you want them to.” And the sale is negotiated.
A common reason for providers to close group homes is that they have been operating at a loss for some time. With that, why would a new organization want to acquire that program to begin with? After all, wouldn’t they lose money too? Not necessarily. Their cost structure may be very different. Maybe they only staff the home at legal minimums where the previous organization was unwilling to do so. Maybe they pay staff less, offer fewer benefits, or have found other places to cut costs. Maybe their corporate overhead is less. There are many factors in play but one thing is both certain and disturbing: The building, the furniture and, sadly, the Medicaid-eligible people have become company assets in a business transaction. It is the system we have built and, though it is both inhumane and financially unsustainable, it is widespread. So, how can people of faith respond?
Where do faith communities come in?
People in communities of faith are already prepared to do what few other organizations, no matter how well-intentioned or well-funded can do, not only because of their altruistic nature, but because of their very practical and purposeful way of being. What practical steps can they take?
- Friendship. People with intellectual and developmental disabilities are likely to be those at the mercy of funding and bureaucracy. The people they know the best and often count as friends are really just the staff who are paid to be there. Congregations can offer something better — authentic relationships, real friendships, welcoming and belonging.
- Family support. Families — especially parents — of people with disabilities have likely known a lifetime of instability of support services. They have seen it in healthcare, education, and adult services. They too need support in times of transition, and they long for continuity. Imagine a faith community as a crowd of real friends with arms and hearts wide open.
- Advocacy. The inadequacy of funding intended to support people living in the community has left those same people on very unstable ground. People of faith, being human and civil rights oriented, recognize injustice when they see it. There is a call here for a more stable and sustainable public policy. The problems are complex, to be sure, and we cannot pretend that the solutions will be anything less. But there is evidence that a system that and allows for more first-person control and choice may save money and, in the end, preserve a better chance for life, liberty, and the pursuit of happiness.
As with many other issues, congregations are uniquely positioned for an indispensable role at the intersection of faith and disability.