A few years ago I was talking with a woman whose husband suffered a brain injury. She said, “The moment he got his disability he became a cottage industry.”  While the definition of a cottage industry involves work done at home, the point she was making was and is spot-on accurate. People with disabilities are often seen as a way of making money.

As those of you who are regular readers this blog know, I live with a brain injury and have worked in the field for 15 years, for the most part in the arena of New York’s Traumatic Brain Injury Waiver, a welcome form of Medicaid reimbursement that funds services designed to help survivors of brain injury remain in the community and grow their independence.  Companies and individuals who provide waiver services run from the gamut, from superbs to slugs. The superbs are those who really work to help someone grow his or her independence which results in their actually needing less services over time. The slugs are those who pile on as many services as possible, often more than any person, brain injured or not, can handle, or, for that matter, needs. The slugs do all they can to keep survivors in their program and have no intention whatsoever of helping them increase their independence.  I call it community-based warehousing.

A perfect example of a slug provider at work was an example cited in an April blog post.

“I know someone who lived with a brain injury. She is extremely bright and nobody’s fool. Were she in a coma she could likely outwit 99 percent of the people I know. Anyway, she was attending a day program and made it known she wanted to get a part time job. So the program tells this woman that they will clear out a little office space they have and set it up with candy and soda so she can sell the items a few hours a week and she can keep some of the money. This woman said to me, “Do they think I’m stupid or what? Do they think I don’t know that the only reason they’re offering this is so they can bill for the hours I’m in selling their damned candy?” In other words, all this Albany-based provider cared about was not losing the money they would lose if this woman had a part time job in the, wait for it, community!”

This same provider enlisted some in their program to clean their offices, paid them a pittance, and reported them as people that had successfully returned to the workforce. Oh, the program billed Medicaid for the time the survivors were cleaning their offices. Bill trumps humanity on too many fronts.

We are not cottage industries, we are human beings.

There are some extraordinary providers who know this. Cortland Community Re-Entry Program in Cortland is wonderful, Living Resources in the Albany area is too, and  so is the Long Island-based program, RES. They know we are not cottage industries and they also know something else too. By providing high quality services, people with brain injuries grow their independence, the word gets out, and more people want to go to their programs.

If you are inclined to blame the current state of affairs solely on the New York State Department of Health, don’t. Like most state agencies,  in my view, they are, through no fault of their own, understaffed and overworked. It is not easy for them to send out the number of survey teams they’d like to in order to take the slugs to task and praise the superbs.

The responsibility of making a slug a superb falls on all our shoulders. The dysfunction of dehumanization needs to be brought into the light. If you are someone who knows of this type of dysfunction and you are unsure of what to do with it, or you are scared of what might happen if you do act, drop me a line.

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