2015 Research Fellow
This summer I’m moving. Again. It will be my sixth “residence” since graduating college. Over the last seven years, home has included a three bedroom apartment in Somerville, my parent’s basement (Cellar Dwellers Unite!), a grad school dorm where adults regress to freshman status, full-size bunk beds on the Lower East Side (full-size bunk beds are a real thing), and a bedroom that was actually a closet found somewhere deep in a Brooklyn craigslist. Despite all the quirks that came with each dwelling place—communal showers, head whacks on the top bunk, et cetera—each one was home in some special way.
But, for many adults with disabilities, a suitable home is hard—sometimes almost impossible—to come by. In the time that I moved five times, hundreds of thousands of individuals with disabilities across the U.S. have sat on housing waitlists. They’re waiting, often many years, to make just one crucial move, the move out of their parent’s home into community or independent living. The United States spends over $77 billion dollars annually on special education, often working to prepare individuals with disabilities to be successful, independent, and included. Yet those opportunities for independence inclusion are almost non-existent after exiting the school system. We spend billions in public funds preparing individuals with disabilities for opportunities they may never be able to have.
The most obvious issue here is funding and availability of housing offerings. Most state agencies who are on the front lines of addressing this need are finding there simply isn’t enough public funding to support placements and support services for the high number of individuals with disabilities who need it. As state developmental services budgets are cut and numbers of adults with disabilities increase, the challenge is only growing over time.
While increasing funding (or at least preventing budget cuts) is a key part of the solution, it will only incrementally address the growing waitlists for housing services. Absent an increase in the supply of suitable housing options, funding alone won’t likely fix the problem. Many providers, families, and organizations have taken it upon themselves to innovate new solutions to housing placements; experimenting with different operational structures, engaging private funders, rallying parent support, and innovating new housing models. By understanding what makes these innovative models effective, and where they face challenges, policymakers can better support new solutions for the disability housing crisis. With support from the Joint Center, I spent last summer examining a few of these approaches and what we can learn from them, and have reported my findings in the paper “Disability Housing: What’s happening? What’s challenging? What’s needed?”.
Perhaps the most obvious finding from spending time with consumers and providers is that one size does not fit all. While there are some common best practices—engaging families, supporting choice, linking to employment and transit, and retaining quality staff—there is not one single housing type or model that is right for all people with disabilities. As for people without disabilities, what people want their home to look like varies greatly. Some people desire an apartment in a city while other prefer a house with lots of land in a more rural neighborhood. Some people want to live alone and other want to be surrounded by lots of friends, family, and activity. Policies must support a range of options and choices for individuals with disabilities.
The second key issue in finding housing solutions is the right to risk, meaning that housing options shouldn’t be unduly constrained by concerns about residents safety. A right to risk would bring a willingness to innovate and provide support for experimenting with new models. Policymakers and regulators, perhaps wary of litigation, seem to be resistant to anything that may lead to failure or risk. They want to protect people with disabilities, sometimes at any cost. But people with disabilities should be allowed to take risks themselves and providers should be supported to innovate with new approaches. While we should protect people as best we can, we can’t let protection stifle new ideas. The only way disability housing can improve is if we give it space to innovate, and even make mistakes.
While providing housing and adult services for people with disabilities presents challenges, it’s also full of opportunities. It’s an opportunity to better integrate our communities. Thinking about these issues helps us reexamine what it means to support quality and affordable housing for all populations, not just those with disabilities. It’s an opportunity to re-evaluate and innovate around how we create communities, connect with our neighbors, and age within our homes. With the right program design and service delivery, we can start to change the predominant concerns of parents of children with disabilities. No longer will they worry, “Where will my child live after I die?” or “Who will care for my child?” Instead, they can wonder: “Which housing option is right for my child?” And most of all: “What community will be lucky enough to have my child as a member?”
Individuals with disabilities and advocates have been fighting for thoughtful supports, inclusion in communities, and independent living since the 1960s. The challenge isn’t new, but the solutions will need to be.
Micaela Connery was a summer research fellow for the Joint Center for Housing Studies. She is an MPP Candidate at Harvard Kennedy School focusing on disability, inclusion, and community development. She is a member of the inaugural class of New World Social Enterprise Fellows at the Center for Public Leadership at Harvard. She will continue with her studies as a Mitchell Scholar in the Fall of 2016, pursuing her MBA at the Smurfit School at University College Dublin.
She is presenting a Housing Studies Seminar on this topic at noon on Friday, April 27, 2016 at the Joint Center offices. See our calendar listing for more information.