People with Down Syndrome are Diverse and Have Diverse Needs

The launch of Forever Homes for Us during Down Syndrome Awareness Month 2019 is intentional. It's a month where we typically celebrate that the possibilities for people with Down syndrome are limitless. And that is so true for many. But it's also a moment in time where we should be completely honest that for some people with Down syndrome and other intellectual/developmental disabilities the journey is perhaps more complicated and the possibilities are limited.

Just as each person in the typical population is unique, so to are people with Down syndrome or other intellectual/developmental disabilities. Many have dual diagnoses, comorbidities and/or mental health issues that contribute to complex behavior challenges.

Some families like ours have made the difficult decision to place our children with disabilities in out-of-state residential treatment centers (boarding schools) specially designed to help our complex children succeed. But for many of these students, they are not "cured" of their complex behaviors once they age out of the residential programs at 22. When they leave the residential programs they fall off a cliff into cobbled together adult services that often lead to behavior regression and increased isolation. They would continue to benefit from life-long, 24/7 behavior support in a residential community of care, close to their families.

It's not easy to take an adult with disabilities and serious behaviors into the community. Going to the store, a movie or church is a journey steeped in trepidation. You pray that your child can keep it together this time. Some of our children need the adult equivalent of a residential treatment center where they can continue to grow and learn in a supported community throughout their adult lives.

The policy shift away from congregant living toward small group homes (4 residents) and affordable apartment units for people with disabilities is well-meaning, but turns out to be more isolating and less inclusive for some people with ID/DD and complex behaviors.

A February 20, 2019 article in The Atlantic states, "About half of adults with autism continue to grapple with aggressive, self-injurious behaviors as they get older, and about half are also unemployed—the lowest employment rate among disability groups. Especially for those with greater challenges, it is more difficult to attain the basics necessary to live a comfortable life: housing, job training, and social opportunities."

Just as assisted living communities are considered inclusive residential living options in our neighborhoods, farmstead-type supported communities of care can also be inclusive for our most complex residents. There are successful models around the country where people with intellectual and development disabilities are living and working together in congregant settings. The Brookwood Community in Texas is a shining example.

Some advocates of people with disabilities might disagree with congregant living and working. To those I would say, we can all agree that we need diversity in housing options for people with intellectual/developmental disabilities -- and we should have choices.