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| Micaela Connery 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.
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