Thursday, June 5, 2014

Return to Community for DD Patient Results in Death

The community mental health movement of the 1960s was all about respectful, adequate and compassionate treatment for those with mental illnesses. Included in the movement’s target audience were those who had severe developmental disabilities. Many of the former could find homes, day treatment centers and even work in the community. But for some, especially those with disabilities that imposed severe limitations on their ability to integrate safely and successfully, it would not be a smooth change of environment.

Enormous in-patient facilities had sprung up all over the United States where thousands of patients found either temporary or, seemingly, lifelong homes and care. I’ve worked in community facilities where I met former patients who had been admitted to these huge institutions at age 4 and up. They spent their childhoods in confinement, never knowing what it was like outside the four walls or fenced-in areas.

Do you know what it’s like to never receive a birthday card, a holiday greeting, to use a ballpoint pen, open a car door, use a telephone or go into a supermarket? Can you imagine how bewildering that would be? If you had spent over 65 years in one of these places, would it be unusual for you to give someone the gift of a package of bacon as a present? No, it’s not funny. I once received bacon and I accepted it graciously because I understood the intent.

How could you integrate some of these patients into the community and was that the compassionate thing to do after you had taken away much of their vitality and ability to adapt? Would you think that a woman with a childlike mentality and many physical ailments should be placed in an apartment alone? She didn’t even fully understand the concept of money or how to use it or not to give it to strangers who asked for it. Then, she was raped by a stranger and left in her apartment to be found by a mental health worker who came to check on her.

Another patient was murdered and they never, to my knowledge, ever found the person responsible even though the scene had many items of forensic evidence. One patient pleaded not to be forced from her job in a community center. But the site supervisor felt it would be “best” for her to get a job and an apartment in the community. She failed in any job because she was a 65-year-old, extremely near-sighted woman with overwhelming anxiety.

Broken glasses and a fall didn’t even change the supervisor’s decision. She had to go and be reintegrated. How many hospitalizations had she had and how long had she been in what she called “the campus?” I recall her saying, “That’s what we call it, Pat, the campus. Is that all right?” Let’s just say she had more hospitalizations than you can count with two hands and for more years than anyone wants to know. Strong psychiatric medications failed to quell the anxiety and the tachycardia that sent her into higher and higher spasms of fear. She died of a heart attack. Her roommate in the apartment died first, however, and that must have contributed to her fear of being away from the campus.

One by one the states are closing their psychiatric hospitals and developmental centers where the most seriously ill and impaired live. They are being forcibly returned to community housing with the promise of adequate supervision and service. One has to wonder how a developmentally disabled person, on a supermarket trip with a mental health worker, died if they were supervised. What happened? Poor impulse control took over at the sight of cupcakes and in a flash the individual stuffed as many as they could into their mouth. The worker asked a customer to watch this person as they went to get help. A customer? Is that what you do when someone is choking? Death was the result.

This is the second death I’ve heard about and I’m sure there may be more. Not all the workers are adequately trained or inclined to care. The jobs pay poorly, have high turnover and lack supervision. The former patients often have multiple medical disorders and require specific training. The result of this new rush to deinstitutionalization will surely be more legal suits against state authorities who promised and never delivered on the care that was needed.

Where are they closing hospitals and developmental centers in your area? Do you feel powerless to help insure these former patients will have the care they require or be placed in really supervised housing with medical care? What do you want done?