Disabling Help: How 30 Years Later the Promise of Deinstitutionalization has resulted in Reinstitutionalization and How the Problem Can be Remedied

We felt we were part of the last civil rights movement in our efforts to include persons with developmental disabilities in the mainstream of society. We approached our work with a passion and zeal as we knew what we were doing was important and needed.

The Past:

It was thirty years ago this year, my wife and I opened the first group home for people with developmental disabilities in our community of Clarksburg, West Virginia. It was early in the deinstitutionalization movement in our state and we were excited to be part of a movement that we believed would lead people with developmental disabilities to experience richer lives: living, working and playing as a part of the community rather than segregated from society.

Money was limited but passion and creativity were not. When we met much initial resistance to having a handful of unrelated adults living in a “group home” my wife started the first “supported living” program whereby rather than transition people from group homes into their own apartments, she developed flexible supports in an individualized home setting. With this new model community resistance was minimal.

When we waited endlessly for a DRS assessment of one of housemates only to be told she could not work, we started the first supported employment program for adults with developmental disabilities in West Virginia starting with one person at a time.

Because money was so tight in order to secure additional supports for a person you needed to document the need and garner the assistance of an advocate. There had to be a compelling reason to add support and other less intrusive methods had to be attempted before additional monies could be secured. 

When the state began to secure Medicaid funding for services, the program was able to expand but the focus changed from the person to meeting the needs of the funder. My wife and I became disenchanted with the increased emphasis on paid staff and bureaucracy and we left the field to pursue other dreams.

The Present:

The current Medicaid system for delivering services for people with developmental disabilities hinders the growth and development of people being served. In a time of mandatory budget cuts, the waste of money and lives resulting from a broken system is unconscionable. It doesn’t have to be this way.

I became involved again this year in the work of supporting people with developmental disabilities in living contributing and productive lives. I was shocked to see that several of the people whom we supported with minimal support 30 years ago, now receive 24/7 staff support. The gains we had made in the early 1980’s were lost in a system operated by for profit entities implementing unnecessarily restrictive federal and state regulations resulting in a cost per person served in  24 hour a day, 7 days a week care of  $200,000 or more per person per year. What benefit other than to be “safe” does the person receive?

Not meaningful employment: The National Association of Councils on Developmental Disabilities cites the percentage of all people with developmental disabilities as unemployed at 88%. Of the remaining 12%, how many earn a living wage? How many earn subminimum wage in segregated settings?

Not contributing roles: The Medicaid Model focuses on deficits and remediation. The more that is documented as lacking in people, the more hours that can be billed. When $200,000 a year is spent to marginalize people with developmental disabilities and their support staff, wouldn’t it be possible to think of business ventures that could be implemented to get both entities off of government subsidy?

Thirty years ago there was a belief in the least restrictive environment for a person with an idea called the “dignity of risk”. Today some people are smothered with support 24 hours a day, 7 days a week and the rules make it virtually impossible for them to escape this life of disabling support. Others with greater support needs are denied services. Typically, people who are denied services live at home with family and those receiving services are supported by for-profit businesses. In several instances in order to receive services it is necessary for people to move away from their home community of family and friends.

The irony is when individuals are surrounded only by people paid to be with them they are most vulnerable. With high turnover, and a lack of permanent reciprocal relationships the service recipients are doomed to a life of loneliness, dependence, and insecurity. We all understand the necessity of family and friends in our lives and the richness that comes from our relationships.

When I questioned the need for 24/7 care for the individuals being served who slept all night, there was a list of onerous requirements needed to escape this level of care/support. No attempt had ever been made to teach people the required tasks in order to escape this level of support.

With no independent advocacy component in place there is no motivation on the agency’s part to reduce level of service provided and tremendous resistance to doing so.

When we started 30 years ago, we did everything we could think of to enable people to take as much control over their lives as possible. For example, one typical goal was to enable people to take as much control over their medication as possible. In teaching “self-medication,” we would teach people the type of medicine they used, the names, the purpose, the amount to take and develop systems to teach them how and when to take their medicine with a checklist for them to check off when the pills were taken.

Today, virtually all medicine is distributed by nurses who come to their homes at set times to distribute the pills. When I asked at a team meeting of professionals hired to support persons with developmental disabilities if a picture of each pill could be shown, I was told in order to “self-medicate” people must be able to read the names of the pills. If employers had similar restrictions on employees with a disability they would be sued for not making a reasonable accommodation. How able are you to work or play in the community, when you are stuck at home waiting for the nurse to pass her meds to you?

Thirty years ago we believed in the power of friendships between persons with developmental disabilities and non-disabled peers. One of our housemates ended up meeting a woman who worked at a parking lot on his way to catch a city bus to his “day program.” At first he'd buy pop from a machine there. Eventually a friendship developed. They began to do things together and have lived together for many years. In a sense she became the mother he never had.

Today such a possibility would be virtually impossible. In order for a nonpaid friend to spend time with a person who receives 24/7 care the friend needs to speak with a service coordinator who then gets approval at a team meeting for “natural support” which is written into the care plan. The concern of the team becomes if a nonpaid friend is with this person who is responsible if something bad happens to this person. If somehow the team approves time without staff present, the nonpaid friend must contend with the direct care staffs who are threatened by loss of hours and wages. The only person nearly as vulnerable as the service recipients is their poorly trained and low paid direct care staff.

The irony of this “safety at any cost” model is it makes the people extremely vulnerable. Without active loved ones and friends and no one independent of the agency to check on their behalf, the person is manipulated by the agency and system into a life of total dependency and external control. It does not have to be this way.

The Future: Money needs to be used to enhance the lives of people with developmental disabilities rather than keeping them disabled. Control needs to be with people with disabilities, their loved ones, and independent advocacy groups rather than for profit entities that gain from the disability of others.

I recently watched a movie which chronicled James Meredith’s journey from first student enrolled at Ole Miss and unable to attend a football game to sitting next to the President of the College at a game 30 years later. I contrasted that with the lives of people with developmental disabilities over a similar timeframe.

Sadly, while people are physically present in the community, they are being smothered by support staff and therefore they make no contribution and have no opportunity to shine. Perhaps rather than focus on what is lacking in the individual being served, it is time to demand accountability and positive outcomes from service providers. How many generations of lives will be wasted before our dream of 30 years ago is realized?