The Last of the Institutions – A Personal Reflection

Today’s blog is from Stacy Gillett, the executive director of The Arc of King County. She shares her personal thoughts about institutions for people with developmental disabilities.

StacyInstitutionA recent investigative series on King 5 talks about institutions for people with developmental disabilities in Washington. If you have not yet seen it, I encourage you to watch reports from Susannah Frame. The Arc of King County has taken a stand against institutions because our mission states that we believe everyone deserves to live, learn, work, and play in the community of their choice. When our society includes everyone, we all live a better life as a result.

Personally, I believe this to be true because I have seen what it is like first hand.  Many have heard me speak about my own connections to the disability community through my sister Colleen, but not everyone may know that my own family struggled with the choice of an institution.

Currently, I am co-guardian for my sister Colleen who is 51 years old and has a developmental disability. Colleen needs support in every aspect of her daily life.  She has behavioral challenges, psychiatric issues, needs daily medication management, help with personal care, communication support, help to buy groceries, assistance to get to her volunteer job, and support making everyday choices.

Colleen was raised in our family home until her mid-20s.  My mom fought hard for Colleen to experience all of the same milestones growing up that my other sister and I enjoyed.  She went to public school in the Lake Washington School District where she was “mainstreamed”, she rode the school bus and packed her own lunch.  She had a plan for employment when she left school and, at the time, it felt like her future held so much promise.

When Colleen aged out of school at 21, however, she sat at home, waiting for the school bus to come day after day, with no job support, no day program, no continuing education opportunities, and no hope.

This was the 1980s – a time of historic cuts and low funding.  Colleen’s sense of confidence, the skills she had worked so hard to gain in school, her independent capabilities and her mental health eroded when she had nowhere to be, with no sense of purpose.  My other sister and I moved out of the house to go to college and begin our young lives, and with no one home to help care for Colleen, she became increasingly isolated, depressed, and non-communicative within a few short years.

Colleen needed more than my mom could provide as a single working parent with no support.   When Colleen became dangerously unresponsive and completely dependent on others to care for her, my mom asked for help.  After many trips to hospital emergency rooms, Western State Hospital, and Harborview to beg for some sort of support, placement was offered at Fircrest.  I’ll never forget my mom’s stinging tears when she realized she had spent all those years keeping my sister home, raising her like she raised all of her children, only to have Colleen end up alone and in an institution. It is not where she belonged.

There are times in everyone’s life that, in hindsight, you realize are game changers.  In our family, my sister’s crisis eventually lead us to the home, job, and community connections that we had envisioned for her in high school, but it came at quite a high price – to my sister’s mental health; to my mom’s dignity as she begged for help; the wasted years of struggling to maintain my sister’s right to an education and to live with her family only to see her skills erode in a few short years; and to the state – with a $200,000 annual pricetag for the institutional care of someone who became much less functional when she left high school because she lacked support for employment or a life in her community.

The reality is that my sister didn’t need an institutional placement until the system failed her.  It failed to recognize that with a few low-cost/high-impact programs that support employment for high-school leavers, that offer community access programs for volunteer work and recreational activities, and respite and individual supports to families willing to continue caring for their family member, my sister wouldn’t have lost her skills, lost hope, and fallen into crisis.

Within three years of my sister’s arrival at Fircrest, this institution was the subject of a Department of Justice investigation, and as a result of multiple violations, it was ordered to downsize.  My sister was included in a group of individuals who were offered community residential services, and we took the option.  She has thrived living in the community ever since.

Now, she volunteers six hours a week at the local food bank, and she loves sorting new baby diapers into bags and handing them out to needy moms and families.  Just like the rest of us, she picked out what color of paint she wanted in her room, she helps decide what groceries to put on her shopping list, she has a cat, and she picks out what movie she wants to watch on a Saturday night.  That didn’t happen at Fircrest.  She is thriving among her family and friends in the community with a level of independence that is just right for her because of the availability of the federal Medicaid waiver program that allowed her to leave the institutional setting, because of a court decision called Olmstead that requires she live in a community setting if she chooses, and the support of employment programs that cultivated a job she does well and with pride.

Something has to change.  It is time for a revolution – that includes a revelation that institutional care is inappropriate for people with intellectual and developmental disabilities.

In a recent Harris poll described in the Shriver Report: Insight Into Intellectual and Disabilities in the 21st Century, more than 40% of the country said they do not personally know a person with an intellectual disability and 2 in 5 adults say they are not familiar with intellectual or developmental disability (never heard of it).  Only about 13% of Americans say they have a friend with an intellectual disability and less than 5% know what it is like to work with someone with an intellectual disability. That means that nearly half of our country continues to hold onto outdated views of people with intellectual and developmental disabilities, laced with fear and misunderstanding.

What the Shriver Report tells us is that inclusion works – that of the more than 50% of Americans who do know someone with an intellectual disability, they are significantly more informed, accepting and compassionate toward people with intellectual disabilities.  Exposure is a key indicator of American’s attitudes toward people with intellectual disabilities.  For those American’s who report not knowing someone with an intellectual disability, they cling to old judgements, dated stereotypes and confusion about people with intellectual disabilities.

Perhaps most sobering, 91% of Americans think some, most, or all people would give a child up for adoption or have an abortion if told the child would have an intellectual disability. This is a decision based on fear of being able to handle the situation emotionally, financially and physically.

I grew up seeing my mother fight for my sister’s civil rights—her right to an education and her human right to be seen as a valuable and important member of our family and community. I grew up being told, and being shown, that people with intellectual disabilities were capable and able beings who could not only beat our expectations, but surprisingly out-perform the rest of us when given the right supports, and who could teach us so many lessons about family unity, perseverance, courage, and love.

There are many challenges in the fragile system we have developed to support someone like my sister in the community.  What my sister has is exactly what we believe everyone with an intellectual and developmental disability deserves – the ability to live, learn, work, and play in the community, improving the quality of life for all of us.   But it is time to change a world where someone with an intellectual disability is forced into crisis in order to achieve it or never has the opportunity to make that choice.


5 thoughts on “The Last of the Institutions – A Personal Reflection

    1. But the crisis didn’t have to happen. What the author is describing is not just an intrinsic effect of intellectual/developmental disability. It happened because her sister became isolated from her community. It was the de facto systemic dependence on institutions and not community supports that *caused* the crisis.

      Hospitals exist to stabilize people in psychiatric crisis. She should never have had to be institutionalized in order to eventually access community-based supports. The choices are not institutions or nothing.

  1. I fully support the closing of institutions. It is not a popular nor easy road to travel when advocating for our adult/children’s right to live a full and inclusive life. Unfortunately, many of these barriers such as supports after a person ages out at 21 still exist. Much needs to be done to successfully bring our most vulnerable and marginalized population to be fully included into the community where they choose to work and live. I firmly believe we need to give these folks a voice. “No voice-No choice” goes along with the saying “I may not speak, but I have much to say”. Can you hear what is not being said? Are you listening?

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