Next Book: Brain Injury

Since I suffered my brain injury in 1984 when I was shot and since I began working in the field of brain injury in 1995 I’ve witnessed the presence of the heartfelt commitment of the extraordinary among us as well as the presence of the greedy, self-serving, narcissistic and dictatorial.  I’ve written pages of notes about my experience and with the end of the memoir now in site, one of my next writing projects will be a tell-the-truth book about my experience in the world of brain injury.

Some will be pleased, some won’t. Some will be surprised, some won’t.  Some will be happy, some will be angry. Some will agree, some will disagree. How do I feel about all this? I don’t much care. My responsibility is to be honest and tell the truth to the best of my ability.

One of the things I will write about is what one might call the non-profit myth. The notion that if an agency, company or advocacy group is non-profit it means it really cares. Not so. To be sure, there indeed are terrific non-profits  like the Rochester-based CDR (Center for Disability Rights) headed up by Bruce Darling. CDR is all one could possibly hope for in a non-profit as both a service provider and  advocacy organization.

However, I’ve seen individuals in leadership positions in non-profit settings that are all about themselves. They  have arrived at the rather stupefying notion that the world revolves around them. They lay claim to the advocacy mantle when in truth they offer only lip service and consider their environments to be little more than petri dishes in which they can grow the bacteria necessary to further their self-aggrandizement. As a result, when it comes time to leap into the advocacy trenches and have at it, they are nowhere to be seen. Brain injury survivors and their loved ones along with quite a few healthcare providers know who stepped up to the plate and who didn’t when the New York State Department of Health decided to bring Timothy J. Feeney of bogus-college-degrees fame back into the fold. Brain injury survivors and their loved ones along with quite a few healthcare providers know who spoke up and who remained silent when the state’s DOH began to tell waiver providers they cannot support brain injury survivors at Medicaid Fair Hearings.

No organization of any kind, for-profit or non-profit, ought to be about or solely reliant on only one person or a handful of people.

I will also write about the for-profit myth, the myth that says anything that is for-profit is greed based. While this is often true, there are times it’s not. Until recently, Cortland, New York’s CCRP (Cortland Community Re-Entry Program), a for-profit that operated under the oftentimes problematic umbrella of Healthcare Associates, was one of the best if not the best Traumatic Brain Injury Waiver program in the entire state. The program crumbled when, after the untimely and tragic death of the head of Healthcare Associates, Anthony Salerno,  the running of the organization fell into disarray and CCRP fell apart, but not because it was a for-profit.

I may well write more about this upcoming writing project, but this is enough for now. Stay tuned.

 

We Are Not Cottage Industries

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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We Are Not Children, We Are Not Slaves: Living With a Brain Injury- Part I

Discrimination denies people what they deserve – their freedom.

I have lived with a brain injury for nearly 20 years and have worked in the field for nearly 15 of those years. Raised in a civil rights family I am very much an advocate for every individual’s right to be who they are, in safety, with equality, in the world they live in. When I talk with survivors of brain injuries in this state and others, the number one complaint I hear is They treat us like we are children. Tragically this is true.

My injury was sustained when I was held-up and shot in the head at point blank range in 1984.

The dehumanization of people with brain injuries (of people with disabilities) is epidemic in scope. In too many instances those who live with brain injuries are treated by health care providers as chattel. Living things used to make money for the greedy. No matter how you hold this truth up to the light, it is a form of slavery: emotional, spiritual and physical slavery.

My state, New York State, offers what in common parlance here is referred to as the Medicaid Waiver. The waiver is a form of Medicaid reimbursement for healthcare providers who offer services to people with brain injuries who live in the community. While the lives of many brain injury survivors has improved as a result, the lives of many on the waiver have been turned into a form of community-based incarceration.

This is not a situation that calls for broad brush strokes. There are waiver providers in this state who, in my view, do an extraordinary job. The Cortland Community Re-Entry Program in Cortland and Living Resources in Albany are two superb providers. Others, like the Albany-based Belvedere Brain Injury Program is not even close to its website’s claim that it is “the Capital District’s leading traumatic brain injury community rehabilitation program”. An arrogant and unfounded claim if ever there was one.

to be cont’d