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Thread: Joining forces in the Caregiving Movement - Political/Social Change Now!

  1. #1
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    Default Joining forces in the Caregiving Movement - Political/Social Change Now!

    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    AWESOME POST! BRAVO DONNA!!

    In the U.S., the fight for Olmstead (to get folks out of institutions and into the community) and the ADA were supposed to lead toward better caregiving and higher standards of caregiving.

    In our state, efforts have been made through the years to improve the professional caregiving through IHSS, by requiring training, and even (to my chagrin after 25 years as Jon's IHSS careprovider) fingerprinting and background checks. I'm pleased to report that I am not a felon. My friend and I resented that we were put through that after all of our years of caring for our sons in this program, but we see the benefit in general for the new standards. If a stranger became our sons' careprovider, we would want that person to be trained and have a background check. We just thought it made more economic sense to "grandfather" us into the program.

    But the fact is that careproviding is a difficult job, a back breaking job, and the pay is absolutely not stupendous and certainly not commensurate with the level of responsibility. For example, should a caregiver who delivers groceries, cleans house, and gives a bath to a recipient twice a week be compensated equally to a caregiver, who works every day for 9 hours, providing head to toe constant care? Or who cares for a person with a serious illness, or who has multiple disabilities, or is on a vent? NO, but they are.

    Careproviding is not an easy job, and it takes a special person to be a good care giver. Just like it does to be a nurse, or a medical professional. To attract people to the profession of caregiving, the actual profession deserves respect and recognition. As activists and as persons with disabling conditions, we need to be vocal about how important caregiving is as a profession, and how the need for compassionate, qualified caregivers will always be a job in demand, likely to increase over decades.

    Better wages, better benefits, all of those things are factors in bringing new caregivers into the fold.

    Programs to compensate family members, who care for loved ones, also need to be implemented. We can't work outside the home, and be at home, providing care to our loved ones at the same time. Unless a person is independently wealthy, they are going to need an income to support themselves and the loved one for whom they are providing care.

    The battle for this needs to be waged now, and parents of younger children need to lend their voices to the movement, because if they wait until their children are adults, it will be too late. The foundation needs to be laid now for the future.

    And it's easy to think it won't apply to you, because you have family members, friends, or some kind of plan, but the fact is that a lot can and does change in 10 years. Who knows what things will be like then? We have to establish a system, put it in place, so that it will be functional in 10 years. That's how slow things move.

    Hold the banner high and work toward ensuring that all who need care receive that care in a safe, compassionate manner. It is the right of every human.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 09-20-2012 at 06:35 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Will do, Rose, will do. Thank you!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  4. #4
    Distinguished Community Member andromeda31's Avatar
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    well said ladies! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Bravo Donna and Rose!! PCA's need to be paid more! I think how lucky I am daily cause I don't need them. But I have friends who do, it'd be scary, how do I get people I'd want in my home if my state is paying such a low rate?

    Added to say: I think the ADA has failed in a lot of ways. It got the basic's-more parking, made public buildings more accessible but I have not seen it help employment(for me) or issues around care giving(effecting families on this board). Really all the time I feel the internet has helped me function way more than the ADA! The first college I went to was built totally accessible in the 1970's, prior to the ADA. Really I don't see what thee ADA has done..
    Last edited by jul97; 09-28-2012 at 10:46 PM.

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    I don't live in the states, but having lived in Canada (which is OK because everything is mostly newly built) and in the UK where everything is old and protected by heritage (there fore no ramps allowed very often), I would say that ADA is probably similar to a lot of pieces of huge legislation. It's effectiveness falls somewhere in between peoples' best hopes and worst fears. But I think that it would be worse if nothing existed to protect at least w/c access, don't you? I remember in the 90s in London, England, there were plenty of times with my son when we could not enter a building because there was literally a sign reading 'no wheelchairs allowed'. I would always ask, of course, why on earth they would have such a sign and the response was 'health and safety'. "Huh???" Apparently, because a wheelchair user might not get out in a fire, they could use that as an excuse to avoid expensive architectural mods (which, in a beautiful old building would not have been allowed on heritage grounds anyway). So, all in all, I think the ADA may not do all it promised, but it's probably better to have it than not. But that's looking from the outside. I have lived in the US since the 1980 before my son born!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((jul97))))))

    The ADA certainly isn't a panacea, but it has had a positive impact on increasing accessibility for persons with disabilities. Without it, I have no doubt that changes in infrastructure and accommodations would not have occurred.

    Even with the ADA in place, many lawsuits were filed regarding violations, because business owners didn't want to be forced to provide access to persons with disabilities. One famous noncompliant business owner, Clint Eastwood, even testified before Congress that the ADA was unnecessary and a violation of HIS rights. He refused to retrofit his resort in Carmel) to accommodate wheelchair users. He was sued by a patron in a w/c, and he countersued, claiming that the woman never attempted to stay at his resort. He prevailed, but the jury determined that he needed to retrofit his resort, which he said he was doing.

    http://www.sfgate.com/bayarea/articl...ys-2736250.php

    At his age now, he might discover the need for accessibility.

    Our courts have been tied up with countless ADA violation lawsuits, so much so that many were dismissed without consideration. Just because we have a law, it doesn't mean that it will be enforced. But at least it is there as a protection to allow due process (when the courts allow due process, that is).

    In our state, the Olmstead Act has been quite effective in closing down institutions and moving folks into the community, as well as providing services, like IHSS, so that people can remain safely in their own homes.

    Change doesn't happen, because we have laws. We make change happen. First, we advocate for the laws, then we advocate for enforcement of the laws. And if we're not on the battle lines all of the time, writing to our legislators, filing complaints, organizing or joining public protests, and telling our stories to the world, all of the laws in the universe are of no benefit to us.

    We put people into elected office, and we pay their salaries. They work for us. And it is up to us to make sure that they do.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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