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Letters about our May/June cover story

  • Nursing home 'a miserable situation' -- D. Dickinson
  • Segregation is segregation -- Steve Gold

    Plus . . .

  • Killer therapy -- Carolyn Reed

  • Nursing home 'a miserable situation'

    I wonder why the guardian of the young man in your cover story, "Bed Money" (May/June), did not feel the community was safe for him to live in? A nursing home is a most undesirable place to be. I would have to carefully weigh which life would be more dangerous. Nursing homes aren't exactly safe places.

    Both my parents (ages 80 and 81) are in a nursing home. It's a miserable situation. They have an assortment of illness and disability. At their age and with so little in the way of possibilities, this nursing home seems to be the only alternative.

    Four years ago when faced with putting my mother in an institution, I tried to find out about a Medicaid waiver in Michigan, but there was precious little to find out. The person I was referred to at the Area Agency on Aging knew little about it. No help there. The ombudsman just referred me back to that agency. Social workers at the hospital she was leaving knew nothing!

    So my mom, who was at that time much more able to live in her own home, ended up in an institution. It has been a hellish four years.

    I managed to keep my dad out, worked out a few safeguards and when he had his fourth stroke my brother took him into his household. However that didn't last long, as my dad had yet another stroke and didn't rehab to the point where he was able to live without someone to assist him during the day.

    Since my brother didn't have the requisite fortune to spend on private care and my dad's assets were minimal, Dad too ended up in a nursing home.

    Of course my siblings and I feel a great deal of guilt. I've often thought how great it would be if I had the funds that are spent on my mother and dad (by the state!). I know I could do better managing their care within a real home -- my brother's or mine -- where they could be with those who love them instead of with strangers who are often abusive or disinterested.

    Some people are too mentally disabled by diseases such as Alzheimer's and senility not to be in a nursing home. Some are very ill and really do need to have a very managed care situation. Some have no family left, or their families are often aged themselves and hanging on by a thread.

    However I also know that people in nursing homes do not get the level of care they need.

    So I see two needs (objectives) here: That those who can live in the community be allowed to do so, and that those who cannot receive better care within the institutional setting.

    I cannot say that I feel that nursing homes are even close to ideal. I could make a much more radical and damning statement, but I'll leave it at that.

    I also wonder whether there is enough "private" care available to those who need it, especially "around the clock" type arrangements. I have had some disappointing experiences with agency help and wonder if there is such a thing as good private care? I ask this because my mother is unable to stand or walk and needs pretty intensive care. Does such care exist?

    D. Dickinson

    People who are "unable to stand or walk" do not need nursing care; they need someone to help them get around. An accessible home and a power wheelchair are great aids; but older people are often not given them. To contact advocates in Michigan who are trying to change the system to get more in-home services, visit www.freedomclearinghouse.org online and follow the link to "advocates." -- ed.

    In nursing homes or schools, segregation is segregation

    When are advocates going to wake up as to how the Individuals with Disabilities Education Act -- P. L. 94-142 -- has perpetuated segregation?

    In a recent report to Congress, the U.S. Department of Education reported that for children who had only "orthopedic impairments" only about 40 percent of them were fully integrated in "regular" classes. About the same number were totally segregated in separate classes and separate schools, with the remaining 20 percent partially segregated, partially integrated -- in "resource rooms."

    As long as children with disabilities remain segregated in school settings, these children, their parents and the nondisabled folks will not understand why we fight to end segregation in other institutions, including nursing homes.

    Just as we know how to educate children with disabilities in integrated classrooms, we know how to provide community-based services for adults with disabilities. In order to end our culture's assumption of "special" -- let's call it what it is, "segregation" -- it must be confronted for every age and in every setting.

    Steve Gold

    Killer Therapy

    She was only 10 years old. Her name was Candace Newmaker of Durham, N.C.. News stories in May reported that her mom had taken her to a center in Evergreen, Colorado for "re-birthing therapy." She died of suffocation, said the news, during one of the "procedures." The news reported that there was an arrest warrant out for the mother.

    The girl had been accused of "failure to bond." Her medications had apparently not worked, according to the mother.

    One wonders: which meds, and how many different trials? -- just as one wonders what other less restrictive and non-aversive therapies had been tried first. Had this pseudo therapy been regulated, had these pseudo therapists been monitored, or held accountable, maybe Candace would still be alive.

    Maybe if the four people who had held her stuffed in a blanket and pillows for over an hour had listened to her the numerous times she told them she was dying or couldn't breathe; maybe if they'd checked her for vital signs in the half hour she lay motionless after that . . . maybe she could have lived.

    Maybe if this so-called therapy were made illegal . . . maybe, maybe, maybe.

    Not to disparage all therapies, but maybe if this society didn't devalue people with mental and cognitive disorders, didn't punish them, blame them, shame them, tie them up, beat them, shock them, reject them, or deny them their rights. . . . maybe we'd be talking about another world -- a world where some therapies didn't kill people.

    But in the final analysis, why should we be surprised? A million little murders (metaphorically speaking) are committed everyday in the name of sanity. The Great Un-labeled -- the ones who think they're Sane and Able, are always waiting, watching, judging people with mental disabilities.

    It's a game they play: "I'm-Better-More-Right-More-Appropriate-Than-You-And-I-Can-Save-You-Because-I-Know-Best."

    Sane and Able genuinely believe in their techniques. They do it for someone's "own good," or they do it to teach "appropriate behavior." The sickest part is they really do mean well, or convince themselves they do, just like the "therapists" in Evergreen.

    Carolyn Reed
    Los Angeles


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