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When ‘De-institutionalization’ Goes Overboard

Forcing the lowest functioning “into the community” is inexcusable

My adult daughter suffered profound brain damage at birth due to a bungled delivery. Had someone been on the ball and decided to deliver her by Caesarian section three hours earlier, she’d have had the prospect of a normal life. Instead, she survived her birth trauma with cognitive abilities permanently akin to that of an infant, and with a panoply of medical complications that require her to be fed through a tube, have excess stomach fluids drained through another tube, wear devices to keep deformation of her spine and wrists in check, and receive numerous medications to control seizures and other problems. I thought that I would never encounter anyone less worthy of respect than the obstetrician responsible for this negligence.

But after decades of seeing to it that my daughter received the best care available, I encountered, a few years ago, a far worse evil: a threat to the lives of my daughter and others like her that is premeditated and makes no apology. I discovered that a coalition of real estate developers, professional litigators, and advocates for higher-functioning cognitively impaired individuals had judicially kidnapped my daughter into a legal class composed of individuals they claimed to represent without their guardians’ consent. And I learned that they had gotten a federal judge and the state of Massachusetts to sign on to a program of moving the individuals in this class into residential group homes providing far lower levels of medical attention, staffing redundancy, and programming than the specialized nursing home that provides for my daughter’s every need since she is incapable of performing even the simplest functions for herself. I learned, finally, that what’s happening on institutional care in Massachusetts is part of a broad national trend.

When I and other family members of the patients in my daughter’s nursing home learned what was happening and told friends and members of our extended families, they were disbelieving. How could anyone assert that moving such fragile and cognitively impaired individuals into smaller houses with less staff would improve their quality of life? We all assumed that a mistake had been made and would be corrected once we brought it to the attention of the authorities. That didn’t happen. Our governor and secretary of state never answered our letters and phone calls. The judge lectured us in his courtroom, telling us that we were ignorant and giving us no opportunity to respond. The Department of Disability Services told us to wait our turns, that they would decide each of our children’s fates in their superior wisdom. A state official hinted that if we offered too much resistance she would look into revoking our facility’s license. I was personally told to mind my business because they had put my daughter on a list of those less likely to be moved, with no explanation as to why others like her were on the likely moving list.

My daughter lives in what is undoubtedly one of the top facilities of its kind in the world. Licensed as a pediatric nursing home, residents who arrive before adulthood are never turned away as adults because there are no comparable facilities for adults like them. They have in-house daytime activities every day, are attended to by certified nursing assistants, nurses, nurse practitioners, and doctors, are regularly visited by a variety of musical performers, and are taken on frequent trips to local outdoor and indoor sites in a fleet of wheelchair-adapted vans. Most costs are covered by Medicare and Medicaid, and the non-profit organization owning the home raises additional funds to cover any gaps.

Residents of this facility do not know, as you or I might, where in particular they live. At best, they can sense that they are being cared for by individuals whose voices and touch they are familiar with. There is a high level of continuity of staffing, as well as much redundancy, so that if one caregiver who knows my daughter well is ill or leaves the facility, others who know her equally well can fill in and help to train successors. These nurses and nurse’s aides are walking, breathing angels who get profound satisfaction from caring for disabled individuals whom others would find it difficult to be among. Amazingly, they can tell when new trainees are capable of the same caring attitude towards the residents, and they make sure that those who aren’t don’t stay.

A group home can afford only a small staff, often with high turnover and little redundancy. Medical crises invariably mean a trip to a hospital, with attendant dangers. Several patients transferred to small group homes under initiatives similar to the one facing our nursing home have died due to inadequate monitoring in the last few years in our state alone. In one case, a patient with a well-known tendency to put dangerous objects in his mouth died predictably from choking not long after being moved to a group home. The staff at his old institution had successfully protected him from this danger for many years.

What motivates the “de-institutionalizers” to inflict a hell of fear and uncertainty on my fellow parents, insisting that they know better and that our children would be better cared for elsewhere? Some are apparently imbued with an ideology which says that only “mainstreaming” and living “in the community” is acceptable. It seems that if an individual could not live but could only die in a more “normal” community setting, such a death comes closer to their ideals. But the explanation in most cases is less strange. Developers and group home operators earn millions building and operating the homes mandated by the de-institutionalization legal settlements, and the lawyers concerned make a handsome living in the process. It’s a business like anything else.

The most disappointing part of the mix is the role played by organizations that offer programming to higher-functioning retarded individuals. They’ve supported suits like the one that threatened my daughter and her fellow patients because they believe that taking government support away from residents of specialized nursing homes and institutions is the best way to increase the budget for their own programs. They would sacrifice the most helpless to expand services to their preferred constituents. Since my daughter cannot speak for herself, I have to do my best to make their stand better known.

More from Louis Putterman Ph.D.
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