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Thread: Bad Situation for Our Fellow Families in Florida

  1. #1
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    Default Bad Situation for Our Fellow Families in Florida

    http://health.wusf.usf.edu/post/sick...os-doctors-say

    What about an ethic and standard of care for ALL? How can it be so arbitrary state to state????
    Love to you all, my friends,
    Donna
    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
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    ((((((Donna)))))) ~

    The autonomy allotted each State allows State's to pass laws in conflict with Federal laws. For example, States have legalized marijuana for medical and recreational use and that violates Federal law, which considers marijuana a Class 1 drug. States close down abortion clinics, and that is bordering on violating Federal law. Same sex marriage is not regulated, per se, by Federal law, but States can enact laws permitting or denying same sex marriage. States have differing minimum wage laws.

    In Home Supportive Services is a Federal program, but States have the option of not providing IHSS, because it requires State and local (County) funding to add to the Federal funding.

    Florida, as well as Texas, refused the Medicaid expansion contained in the Affordable Care Act (Obamacare).

    http://www.washingtonpost.com/blogs/...ns-of-dollars/

    Now, Medicaid patients, particularly those who are disabled or elderly, are suffering as a result. And the Floridian taxpayers will have a whopping bill in a few years.

    In 2000, our County was selected for a pilot program of managed care for Medicaid. We were told that it would be easier for us to get our sons' needed supplies and services. Along with other advocates in our County, I fought against this program, wrote reams of letters and testimony for State committee hearings, but it was still foisted upon us.

    It was a nightmare! Four levels of bureaucracy: Medicaid; the County managed care agency; the care plans (with insurance companies), who were for profit; the physicians and medical vendors. My boys were denied everything from Depends diapers (use the generic brand, they insisted, which caused rashes and didn't hold the bodily fluids of grown men) to air mattress (no, he can't have alternating, here's a static one). I was constantly on the phone battling between all of the agencies, and no one took responsibility. My boys' needs were meaningless to all of them, as long as the agencies weren't spending but were making money.

    I spent an entire summer fighting to keep our doctor, hospital and nursing agency, all of which are connected to a Catholic diocese, with the mission to serve those in need. They had decided that they couldn't continue to serve Medicaid patients with the issues associated with the managed care approach. They are mighty powerful in our county, and their threat to back out caused the Managed Care program to be restructured.

    Jon and all patients associated with the Catholic hospital, doctors, and nursing agency are on Direct Care, so there are no middle men raking in dough by denying care, services or supplies. I don't know about the remainder of the managed care program, because I have too many other issues to address on a daily basis, and we are free now from that horrible tangled mess.

    You might recall our discussion awhile ago about Floridian children with developmental disabilities being placed out of their homes into nursing homes. So, the current denial of services to these children/adults in Florida is not surprising, sadly.

    Election Day for Mid-Terms is only a few weeks away. If we want to change the way things are, we need to make our voices heard at the polls. We need to remember that politicians lie and break promises. So our choices may come down to the lesser of two evils. Who is willing to go to bat for our children? I suggest that we all determine that by visiting the websites of our candidates, and emailing or contacting them by phone to ask some basic questions.

    I guarantee that the only time politicians are concerned about persons with disabilities is when they are cornered and forced to respond to direct questions about services for disabled citizens. I have listened to thousands of speeches, and I wait for an acknowledgement of persons with disabilities and our elderly population, which is growing steadily (raising my hand). We are not on their radar. Why? We are tax dollar dependent. We are a drain on the economy.

    After President Obama was elected in 2008, he opened a website asking citizens to start blogs about their concerns, by topic. When I finally discovered this site, it was too late to submit. And I scoured that site for quite a long time, and not one blog addressed disabilities.

    People with disabilities are the Forgotten Minority, and they are disrespected and discarded, devalued and dehumanized. If we don't speak out, we won't be heard. If we don't fight, we can't win.

    And, while we are all concerned about this injustice to our beloved children, and our friends with disabilities, the rest of the country (perhaps the world) is focused on Ebola. There is always another crisis to divert attention from the basic needs of our most vulnerable citizens.

    In the 60s, 70s and 80s, we did more than write letters and make phone calls. We showed up at rallies, at committee hearings, outside the door of an elected official's office, organizing meetings, etc.. That does not happen any longer. We elect people, who don't care about us, and then we just let them do whatever they want to do to us.

    So, if the people of Florida, who are affected by this travesty, band together and demand change, then perhaps something will change. In the article you linked, it was apparent that the Floridian authorities just laughed off the letter written to them as non-specific. It's a political game, and the pawns are children with severe medical needs.

    And based upon my 45 years of playing this game, it is painfully and sorrowfully obvious to me that nothing has changed.



    But, we keep hoping, praying, and working for change. It's all we can do. And we must do it.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Hi Rose,
    I remember Obama's site and I remember feeling so hopeful that parents like us would write in and change everything. It's so disappointing and Florida definitely seems to be the worst. That said, I am on a committee at the moment (there are 5 of us on it) and we are called 'The Expert Committee on Home and Community Care' advising the minister of health for the province. We know that this new minister 'wants to act quickly' to make changes. Maybe, just maybe, we can effect some real change. For sure, we all agree with each other on just about everything which is wonderful and we are determined to make recommendations which we believe, if enacted, will be transformational for people receiving home care in our province. It's not a long timeline (Jan. 31st is when we submit our report). So I'll keep you posted on how it goes! It takes someone at the top (in this case, the minister) who is willing to act and is brave and ethical - we'll see if all the stars align in this particular case. It's much harder to instigate change as a consumer when those who hold power have a vested interest in the status quo. I guess that's the case in Florida. Anyway, just to change the subject for a moment, I guess you've read about the terrible events this week in Ottawa, where I live. It's been a shocking and sad week for our country. It continues - it's just so hard to believe what happened. Now there's a makeshift memorial of flowers at the tomb of the unknown soldier where the young soldier was murdered. Everyone is steadfast in not letting this change our free access to Parliament Hill though. Yoga on the lawn on Wednesdays will continue and there will be no building of high fences. Canadians are unified on that. Sad week. Sending love to you, my dear dear friend. xoxo Donna
    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
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    ((((((Donna)))))) ~

    Thank you so much for your efforts on the The Expert Committee on Home and Community Care! How I wish such committees were in existence in the U.S. If they are, we don't hear about them. How wonderful, too, that your Province's Minister of Health wants to make changes in the System to serve individuals more effectively and compassionately. Indeed, a high level elected official is the key to change. I have no doubt that you and the other 4 members of your committee will present a firm, articulate and well-researched recommendation to the Minister. By all means, please do keep us updated on the progress!

    You and Jim were my first thought as we watched the news unfold after the shooting of Nathan Cirillo in front of your Parliament. I cried to Jim, "This is Canada! It's not the U.S.! This shouldn't be happening in Canada! They don't have this kind of thing happening there!"

    Here is Nathan, proudly guarding the Tomb of the Unknown Soldier, only 12 minutes before his Earthly life was cruelly taken ~

    Screen Shot 2014-10-24 at 7.00.58 PM.jpg

    My heart breaks for Nathan's parents, family, friends, loved ones, and all Canadians.

    Yesterday, I watched and cried as Kevin Vickers received a nearly 4 minute standing ovation for shooting and killing the terrorist, who killed Nathan and invaded Parliament. And Kevin's facial expression said it all.

    I stand with you, Canadians, in your strong reserve to continue on with your peaceful life. Because, if we live in terror, the terrorists win.

    And, about President Obama's blog site ... I was writing furiously to submit the one and only blog on disabilities, thinking that would get it noticed! A neighbor knocked on our door and began to tell us her tale of woe for several hours, and by the time I returned to the blog and the site, the deadline had passed. And, while I realize that everyone has their own pot to boil, her problems were not worth that sacrifice.

    We need elected officials like your Prime Minister of Health. But alas, and alack, we have money-hungry opportunists running for offices in our local, state, and federal elections. "What's in it for me?" seems to be the motto of every candidate on our ballot. Sure, they spout promises and feign caring for the disenfranchised, but at the end of the day, they are in it for the money and the glory. Our governor was once a Jesuit priest. Now he has attempted to decimate the IHSS program over the past few years. Wolf in sheep's clothing ... Beware!

    Look at the elections in Florida ~ even if the Governorship changes, will other things change too? It didn't quite work out in a positive way for us in my State.

    Politics. Blech!



    Prayers for Peace in Canada, and around the world ~

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Politics - Blech!!!! Is right!!!!!! Thank you for your prayers, Rose! We are praying for Nathan Cirillo and his family too. Last night Jim and I went to the war Memorial which is not also a shrine to Nathan and there were hundreds of people standing silently. Many, many bouquets of flowers line the tomb of the unknown soldier. This year's Remembrance Day service will be more poignant than ever.
    I do hope that our committee will result in lasting, positive change. We'll see, I hope so!
    Last night Nick got to meet Mick Foley from the WWE who was in town to do a standup routine at a comedy club. Mick is the most interesting star of the WWE - he's a book author and actor - his books have actually received very good reviews in the New York Review of Books. And he's funny. Anyway, Nick had a great time of course, he was sore afterwards, but he's feeling better today. So all is well. :)
    How is Jon today?
    xoxo Donna
    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


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