Saturday, April 21, 2012

New Salt Lake Tribune story



For disabled Utah professor, there’s no place like home

Wife and philosopher says it’s “unconscionable” not to have a choice.

First Published Apr 20 2012 04:50 pm • Last Updated Apr 20 2012 11:33 pm

Home is where retired University of Utah English professor Brooke Hopkins is, and wants to be, as he carries on with life 3½ years after a paralyzing bicycle accident.

But Hopkins and his caretaker wife, U. philosophy professor Peggy Battin, said Friday they know his ability to live outside of an institution is possible largely because they had financial access to care resources unavailable to most people with disabilities.

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And to an ethicist such as Battin, it is "unconscionable" that social policies driven by insurance coverage and health care reform proposals prohibit some people from choosing where they reside while coming to terms with their circumstances.

"The bottom line," she said, "is we ought to make it possible for it to be your choice" to live at home or in an institutional care facility.

Hopkins and Battin were keynote speakers at the 2012 Disability Studies Forum, whose topic was "There’s No Place Like Home."

Other sessions dealt with the home-care issue from the perspectives of others with disabilities — a deaf and blind woman, a schizophrenic formerly addicted to drugs, a traumatic brain injury victim and the parent of grown children with autism — as well as service providers.

Speaking from a wheelchair, flanked by his wife and one of the nearly dozen home health care workers hired to tend to his needs around the clock, Hopkins said that returning to his Avenues home after two years in medical institutions was more difficult than he expected.

He worried whether home-care arrangements would work. Would he be safe? Psychologically, too, it was hard to see so many things around the house that reminded him of what he could do before his spinal cord was severed in a bicycle collision in City Creek Canyon in November 2008.

Nevertheless, Hopkins said, "whatever pain is associated with living in this chained condition [with] reminders of the past, my feelings of belonging outweigh all of that."

"I belong there," he added.

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Battin said the decision to move her husband home was frightening for her and other family members as well.

But in weighing the benefits and disadvantages of home care, and of institutional care, she said it became clear Hopkins and the family would be better off with him living under his own roof.

"That way you can live with the person and not just visit them," she said, lauding the extra spontaneity and flexibility available at home. "Just think about what you can do at home that is not permitted or is frowned upon somewhere else."

The couple’s systematic evaluation of their available options impressed Andrew Riggle, who has spent most of his life in a wheelchair because of cerebral palsy but has his own apartment.

But he was struck by Battin’s observation that victims of devastating spinal cord or brain injuries often are young men with little or no resources or health insurance — people who usually end up tucked away in care facilities.

"I’m really happy that folks like Brooke and Peggy have the time, resources and ability to be able to make the choices they do and are able to make it work," said Riggle, a public policy advocate for the Disability Law Center.

"I just wish everybody could be treated that way," he added. "We need to find a way to make their experience the norm, not the exception."

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Showing 1-10 of 32 comments

  • A true love story never dies.

    Thank you to both of these remarkable professors.If any two people can bring attention to this and enact change; I believe these are the people who will.

  • gfitzger

    This is one of the best series of comments that I have seen in some time-- thanks to all for the excellent observations. Brooke--Peggy hang in there and we will be in touch in a week or so. G&K

  • FreeMarketsFreeMinds

    Would Brooke Hopkins be eligible for any of this when Obamacare kicks in? I don't think Dr. Ezekiel Emanuel would provide for care or any of the treatment for a person of his age. For those of you unfamiliar. Just google " Complete Lives System" or Great Britains DALY. Those with a disability are valued at 50% of a fully contributing citizen and therefore dollars are not devoted to them. Perhaps you should read the papers co-authored by Dr. Ezekiel Emanuel and Dr. Battin. Wake up America!

    (Edited by author 23 hours ago)

  • beenthruit

    Apparently, you don't know much about what I proudly call "Obamacare".

    I am the Chair of the Utah Disability Caucus.

    Trust me...we would all be better off.

    Get the facts before posting...

  • frank james

    hardly anyone regardless could get all these services. I work with families setting up
    for services and this level is RARE. Obamacare would help the many more who have NO services.

  • fudgiemonkey1

    No, he would not. That's the nefarious underpinning of Obamacare. The papers you cite are chilling and they were Obama's closest advisors on this nightmare healthcare overhaul. The disabled, and the elderly in general, will be allowed to wait in pain or need until they give up or die. Think of the money saved in SS payments when people don't live "so long" - Obamacare is a serious threat to the lives of those getting older or those with disabilities and to those who have serious, very expensive care needed. Let's hope the Supreme Court tosses out this horrible nightmare.

  • formersaltlaker

    Right now you can wait in pain or die in the street if you are working poor. Don't even argue with me about that. I will admit I do not know much about ObamaCare, but you have no idea what I have been through.

  • I've been a
    quadriplegic for 9 years. I've spent about 7 of those years in nursing homes
    and care facilities. When you’re in my situation your options are extremely
    limited on where you can live. I was 18 when I got hurt so I don't qualify for
    most benefits that older people so, that limits my options more. Basically I
    have 3 options live with family, community housing for the disabled and nursing
    homes.

    Opt. 1 living
    with family is a challenge often requiring expensive remodeling or even moving.
    Than finding homecare that accepts your insurance. That's probably the biggest
    problem either they don't accept it or the ones that do are already at capacity
    and not accepting new clients. Opt. 2 Community housing has 2 year waiting
    lists or not accepting applications anymore because their list is over 5 years.
    Opt 3 Nursing homes are a place to eat and sleep and that's about it. Don’t get
    me wrong I'm thankful for them but it's NOT a place to live. Your options and
    actions are extremely limited due to laws and rules. These institutions are
    designed for warehousing the elderly and people with Alzheimer’s mainly. For
    younger people like me it's almost like prison. Your told when to do almost
    everything including eat, sleep and shower.

    Before
    living in a nursing home I was basically normal and probably could have
    accomplished more than I have. Now I have issues I get anxiety attacks when I
    go out in public because for 5 years I had almost no contact with anyone. My
    family and friends couldn't visit often or take me out. I got so use to people dying around me that I can't
    develop or maintain a relationship with anyone including family. Nobody knows
    what it does to you psychologically to wake up with somebody you live with 5ft
    away all day everyday for years that's 50 years older than you and usually
    mentally ill. You’re in a room big enough for 2 beds with absolutely no privacy
    and nowhere to go to get privacy. But the thing that probably messed me up most
    is watching people die almost daily. I’ve woken up to dead roommates more times
    than I can count. Waking up with somebody 3ft away starring at eyes wide open
    and dead there’s no words to explain it especially if you’ve developed a
    friendship with them. The other worse part listening to people scream all day
    for various reasons most of the time it’s just random gibberish others it’s “Oh
    god I don’t want to die!” Here’s my conclusion this is a serious issue in our
    society that needs to be addressed.

  • Professor_Whitney

    Great comment Ronnie, good to see some perspective from someone who has experienced it first hand.

  • Ronnie:

    All I can say to you is thank you. Your perspective is valuable.

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