THERE'S NO PLACE LIKE HOME
BY STACEY LEDBETTER
The rise of person-centered communities hold promise for young adults with autism and I/DD by providing sustainable housing and services along with new technology and tools that support independent living.
"What will happen when I'm not here?" is a recurring thought that weighs heavily on the minds of most parents of adult children with autism and intellectual and developmental disabilities (I/DD). I admit that I grapple with my own mortality when considering how my autistic teenage daughter will manage life on her own without me.
The reality is that once young adults with autism and I/DD leave high school and reach the age of 22, they hit the so-called "services cliff" that denotes the end of their free, school-based services, like psychotherapy and life skills training. There's an "autism avalanche" coming, too, as over 500,000 kids with autism will leave high school over the next decade.1
VERY FEW EMPTY NESTERS
The biggest challenge facing these young adults, by far, is where they will live. The lack of affordable and available housing presents a significant crisis for families. Most options center around group homes and immediate care facilities that provide food, shelter and a full gamut of services under one roof. Wait times are long, and not every adult with a disability needs the intensity and 24/7 programming of a group home.
Many adults with I/DD are caught in the middle—wanting to live independently, still needing supported independence, but not qualifying for the whole nine yards of a group home.
No surprise then, that three-fourths of young adults continue to live at home with family,2 even if they don't want to. As adults with disabilities age, so do their parents. Over half of caregivers to I/DD adults are older than 50, and 10% are 75 or older.3 Many are also responsible for caring for their own aging parents. Autism Speaks
estimates it costs families $1.1 million to care for an autistic person over their lifetime, a cost that more than doubles to $2.4 million if there's an accompanying intellectual disability.
MODERN HOUSING THAT FILLS THE GAP
This is a crisis in need of innovation, and through the passion, resources and grit of special needs parents, the tides are starting to turn. Over the last few years there has been a movement to build sustainable, affordable person-centered communities and technology tools that create supported independence ecosystems for I/DD adults who do not require a high level of services and support. Parents are finally seeing their hopes come to life in these homes.
Person-centered communities are unique in many ways. Importantly, these communities decouple services from housing and provide a far less restrictive environment for residents. They're analogous to senior living communities that serve the housing and social needs of a population that's staying alive longer, but who want to keep their own doctors, therapists and individualized programming.
Unlike group homes where everyone shares a floor, person-centered communities consist of separate apartments and townhouses that offer easy access to transportation, life skills training, and amenities like a swimming pool and on-site laundry facility.
Some of these residential models are progressive, bringing together a mix of neurodiverse and neurotypical residents, allowing for a diversity of interactions that are beneficial to society and bring awareness to the social and emotional capacity of people with disabilities. The majority of homes are constructed with universal design principles to accommodate a variety of physical and sensory needs. Even neurotypical adults can appreciate sensory soothing communal areas that incorporate natural light, areas for quiet refuge, and a variety of comfortable seating configurations.
THE RISE OF SUPPORTIVE AND SOCIAL COMMUNITIES
Taking this modern approach to disability and shedding the institutionalized model, encourages autonomy and social interaction,