My first full-time job after high school in the late 1980’s was at a private care facility for people with intellectual disabilities in a rural Pennsylvania town along the Delaware River. A narrow road meandered through the forest uphill from town, opening to a beautifully landscaped property where birds, squirrels, fox and deer often visited. A graceful mansion overlooked the forest, an old carriage house and guest house overlooked the road; it was a storybook picture of a peaceful countryside home. The family who owned the property had a disabled son and opted to create a safe, permanent home for him and others with developmental disabilities.
Inside, the mansion had been renovated to house about 40 older adults with developmental disabilities with low support needs. The back of carriage house had been expanded out over the hillside into a two-level facility that housed about 80 men, women, boys and girls with complex medical and support needs. The guest house had become the day program building; 10 or 20 people from the carriage house went there each weekday. A school bus arrived daily to pick up the youth. Another building down a hill housed an industrial kitchen and laundry.
I worked as a nurse’s aide on the evening shift in the carriage house building. Of the 80 or so people who lived in this building, about two dozen were able to eat by mouth, about one dozen were able to walk, and none were able to speak verbally. Many people received nutrition through tubes that went up their noses down into their stomachs (NG tubes), or tubes surgically inserted into their stomachs (G tubes). Many had scoliosis and/or contractures so severe that even with careful individualized fitting, sitting in chairs or wheelchairs was quite painful. Professional staff included doctors, nurses, and speech, occupational and physical therapists. Positioning experts and respiratory therapists visited often. Habilitation aides worked during the day to implement therapists’ recommendations, and nurse’s aides worked all shifts. Maintenance and kitchen staff were essential.
My job as a nurse’s aide was to help people get comfortable, fed, cleaned, and to bed. Formal duties included repositioning people in their beds, wheelchairs, floor mats or wedges to avoid bedsores; feeding people who were able to eat liquid, pureed or chopped food; carrying people to and from cold, waist-high bathtubs (four to a bathroom) for evening baths; dressing people into pajamas for the night (6-10 people to a bedroom) and changing lots of diapers. The building smelled of urine and cleaning fluid yet I was assured it was much worse before the carpets had been replaced with linoleum floors. There, during evening and overtime overnight shifts when the administrative and habilitative staff weren’t present, outside of the formal training provided, I learned what was never written in the charts. I learned the value and abilities of the people who lived there. Myra taught me with her eye contact and silent laughter that she understood every joke that staff made within her earshot, Joe taught me that he had a soft spot for babies and loved holding and playing with them to help them settle, Dermott taught me that he could tell me what he wanted if I bothered to ask and listen carefully, Botia taught me that she loved the sunshine, Paul taught me what made him uncomfortable, Denise taught me about her fears, every single person taught me lessons about themselves and about myself and about our relationships with each other; these lessons guide me still.
Ownership of the business had transferred from the mother to the daughter by the time I started working there, and the passion for the mission was absent. Pay was low, reputation was poor, staff turnover high, and community engagement absent, resulting in very few local people choosing to work there. Nurse’s aides were hired 50 miles away in Philadelphia and bussed in for double shifts. With few local roots and without oversight from management who worked weekday shift only, many evening, overnight and weekend staff had little incentive to comply with regulations. A number of staff used illegal drugs at work. Educational, recreational, spiritual, and social opportunities for people living there were absent, as was any support for their communication. Verbal, emotional, physical and sexual abuses were rampant. Therapies were not provided, neglect was common, and the health of people who lived there was pitiful. Use of narcotic and psychotropic medications were stunningly high. Bedsores caused dangerous infections, hip contractures were treated with bilateral hip resection surgeries so frequently and with such poor care that the favored surgeon lost her license to practice medicine in the state. Stories too awful to share are burned into the memories and experiences of many who lived and worked there. We planted many trees in memory of people whose lives ended too soon.
The founder’s vision was to create a safe and healthy home for people with disabilities. However, over time, the private for-profit business model prioritized budgets over lives. Isolation from the local community enabled abuses to continue unchecked, as no one off-grounds would ever see the worsening conditions or the bruises, broken bones, and other injuries. Inaccurate assumptions and beliefs about the lack of ability, value, strengths and gifts of people who lived there resulted in lifetimes of trauma. The efforts to close institutions across the country did not result in closing this one, as it is still in business at the time this blog post is being written. How can it still be open?
Thirty years later, families still struggle to find appropriate community services for their loved ones. Poor public funding results in inadequate services, long waiting lists, high staff turnover, wages so low that direct support professionals aren’t able to exit poverty or support their own families, and mistrust of the system overall. Families will do all they can to ensure their loved ones get the services they need. Some families have the means to create the home or neighborhood they believe to be safest for their children with disabilities. Yet I worry that the lessons from the past are being forgotten. The best-laid plans for safe, permanent homes might not be carried on by future generations, as the above story shows. Where services for disabled people are provided in settings away from the communities where the vast majority of us live, everyone loses. People with disabilities lose the educational, recreational, spiritual, social and other opportunities to become their best selves and live their best lives. People without disabilities lose the opportunity to tune in deeply to people with significant disabilities in our community and learn their gifts, strengths, preferences and contributions. We can all benefit from together learning to listen carefully, be compassionate, serve our neighbors and friends, understand our differences, and value our diversity. A fully integrated community helps us all.
I wonder how the disability service system might be transformed if the money being directed toward segregated settings is instead funneled toward community services available to all who need it…if we build strong systems to be sustained long beyond a single generation of kind-hearted benefactors…if public and private funds from governments, managed care insurance companies, and philanthropists can be applied together to solve problems that cannot be solved by each entity alone…if we rise up together to stop the neglect and abuse and segregation of disabled people…if we all learn from each other as equals…if we listen to people with disabilities regarding how and where they want to live, and what safety means for each person…if we can become a society practicing what we preach, where all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness.
AUCD Policy Talk 