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Thread: New blog post about fairness in policy-making for family caregivers

  1. #1
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    Default New blog post about fairness in policy-making for family caregivers

    http://www.donnathomson.com/2012/10/...or-family.html

    Also, just an update: we are visiting friends in Austin for a few days and thank goodness Nick is doing well in our absence. Prayers that today will be OK - anyway, we felt we could get away and made the decision at the last minute when we got the appt with the specialist for next week. Austin is amazing and the music festival is on now, love Texas! Love to all my friends here on Braintalk. xo
    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))))))

    So glad to hear that Nick is feeling better ~ may it continue to be so. Hope the doc appt next week gives you some answers. Please see my most recent replies to your post about Nick ~ I mentioned abdominal seizures, which you had already contemplated.

    Have a blast in Austin! I'm sure the music festival is terrific. Safe travels ~

    Regarding your blog post ~

    Here is a perfect example of the lack of fairness in policy-making for family caregivers:

    Because I am Jon's mother, I am not allowed to have payroll deductions for Social Security and Medicare on my IHSS income. If I were the neighbor next door to Jon, or some stranger to Jon, and I worked as his IHSS caregiver, those two items would be deducted from my paychecks as contributions to these programs. So, because I don't qualify for those deductions, I have to save a portion of my current income for "retirement," because my Social Security payments, when I'm eligible for them, will not reflect the years I've worked.

    Why am I punished by the government, denied benefits that others receive who are IHSS careproviders unrelated to their recipients? I am also taxed heavily on my IHSS income, as are all IHSS careproviders, related or stranger.

    I have never been able to discern the answer to that question. Believe me, I have asked.

    Part of it goes to the notion that I should be taking care of my son. That is my responsibility. Society sees it this way. Society also believes that I should not need a government program to pay me for that care. I should just do it for free. Of course, how we survive on NOTHING doesn't enter their thought processes.

    I WORK FOR A LIVING. 24 hours every day of every year. No vacations, no sick leave, no holidays off. We don't live off of the dole. Sadly, a large number of our citizens think we do get something for nothing and are happy to see budget cuts to IHSS and other social services programs for disabled and elderly people.

    We have to beg for services and programs for our disabled and elderly loved ones. Where in home care is tremendously more fiscally prudent, as well as offers the best quality of life, it is difficult to obtain. Proper in home care reduces costs by reducing visits to the ER and hospitalizations.

    Too many cooks spoil the broth. We have bureaucracies at every level, all of them run inefficiently, with no regard to the human lives affected by their ineptitude. But when the government starts looking for waste to justify slashing budgets for these programs, they don't look at the bureaucracies. The burden is on the backs of the recipients and their careproviders.

    Since I am willing to care for my son, thus saving the government millions of dollars in his care throughout his lifetime, the least they could do is give me the same benefits as non-relative providers and not force me to grovel to get the services my son needs.

    Moreover, when I think about this, it boggles my mind:

    I am paid by tax dollars as Jon's careprovider. I pay ridiculous taxes on that income, at a higher percentage rate than millionaires/billionaires.

    It's like a revolving door. The money goes out, then the money comes back in, then it goes out, then in ...

    Am I actually just paying myself?

    Also this: if Jon is hospitalized, I am not paid. I am only paid for his care when he is in his home. The system believes that nurses and doctors are caring for Jon in the hospital, and I can take a 40 day vacation to Jamaica.

    And, if Jon wasn't my son, or my relative, I can't say that I would not take that opportunity to at least live my own personal life, and maybe take a vacation if I could afford one.

    But, the reality is that if Jim and I were not there day and night at the hospital, monitoring everything happening to Jon, then Jon simply would not be here. Of course, that would suit the System just fine, because it would save It money.

    People are just living too long. That must be it. Our children defy the odds against them, and folks are living well into the 90's now.

    It's not 1950, and this isn't Father Knows Best. It's time for us collectively as a society to acknowledge the needs of others, who are vulnerable, who will only get older and more frail, and provide appropriately for their care.

    And families, who face these challenges, should be respected and supported.

    But, I haven't heard a single word uttered during this campaign season from any side about the needs of our elderly and disabled citizens. It's hard to get help, when you're forgotten.

    And so ends my rant. Written in between suctioning Jon and checking his vitals.

    All brain cells now expended ~

    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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    Distinguished Community Member andromeda31's Avatar
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    Well said Rose! I quit my job when Caitlin was born, and of course, provide her care w/o pay. I do the gas mileage reimbursement for all the medical appointments she goes to. It is a HUGE hassle but I keep doing it out of spite...politicians make it harder but I will jump through their stupid hoops. I feel like I will never be able to do "real" (paying) work again...her health could turn at the drop of a hat and who would give me off for a month while we are at the hospital for shunt infection. (This has happened a few times so no exaggeration!) And when she graduates school eventually...well I like how it was put when WI froze FamilyCare and there was a group fighting for it to be put back in place...graduating to nothing. I worry what my day and hers will be like without school someday. At least I have that respite right now. I am lucky to have good family that helps but my parents & hubby's are in their mid 60's now and my mom already cannot lift Caitlin. I have told Brian I hope to find a nice place where Caitlin can live outside of our home when she is grown. Somewhere close where I can check on her daily and make sure all is good. Even a duplex with us on one side and her and a roommate (like another girl with similar disabilites) on the other side. Just some separation. I wish we had the RDSP or something like it here in the US. My sister is going back to school for her Masters in Social Work and I was calling the gas reimburse place and she was standing there listening to me rant after about how it is and she said I should come talk to her policy class. I said I would gladly do that and would love it! If we don't speak, how do people know how it is? I would like to write to my congresspeople about the RDSP and maybe put a bug in someone's ear about it...squeeky wheel gets the grease? I don't think I will bother though until after elections. I've been thinking about that ever since reading your book Donna. Even if we didn't get the 1 to 3 match and just could set something aside for the future....

    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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    Hi Rose and Lisa,
    Thank you SO much for voicing your experience - everything you both say, I relate to very strongly. We are walking in each other's shoes. We need to fix our problems and when/if we do, many other problems in terms of social policy will fall into place. I would say that our families are typical of the most extreme kinds of needs being met at home. But there are legions of seniors who need care and many more coming including ourselves. You can't just sweep us under the carpet! I think the reason that this situation is so out of hand is that we are women and tend just to get on with it at home and not speak out. Can you imagine if all caregivers suddenly became men? Not that some men aren't great caregivers! I'm just talking about numbers. Anyway, love you both, Donna xox
    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


  5. #5
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    ((((((Lisa))))))

    Definitely fight for a similar program to RDSP. It just makes so much sense. So naturally, no one in our government will consider it! (Sorry ... I'm cynical.) But you are so right: the squeaky wheel does get the grease. The more parents, who write to their legislators to consider an RDSP like program, the more effect it will have upon finding a legislator willing to sponsor the legislation for that program. What would be great would be to establish a group of dedicated parents, who put some pressure on Congress to do this.

    Now is the time to start looking for that ideal place for Caitlin, so that you know that it's there whenever she's ready to leave the nest. Believe me, you can't start planning for that too soon. The next time you blink, Caitlin will be 18. So start exploring existing possibilities, and if you don't like them, then start complaining and creating the environment you want for Caitlin as an adult.

    I had to file a Fair Hearing against Michael's school, because no appropriate adult day programs existed after he graduated at 22. I visited the most dismal, disgusting warehousing "day programs" during a full year of mediation meetings prior to the hearing. We should have started that process at age 14, but the law was only passed that year, and Michael was 21. Transition planning was part of the IEP process then. Should still be.

    I know that your plate is overflowing now, but if you can slate some time to begin exploring what is available and determining what you want for Caitlin, you will be ahead of the game. You may have to fight for years to get what you want too. Better to start now than when she's an adult.

    ((((((Donna))))))

    If men were caregivers and responsible for advocacy for their loved ones, they would be heard and programs would be in place to make their lives easier. Women hold up half the sky, but it's still a man's world.

    More families are facing extreme needs like ours, with cancer, Alzheimer's, MS, ALS, and developmental disabilities on the rise among our population. Baby boomers (like us) will be the next to need care. The older I get, the less fond I am of that thought. I would prefer to just ride off into the sunset.

    A grassroots organization, with many members, is a good place to begin a campaign to change things socially and politically. But that is a lot of work and requires a tremendous amount of time and energy. I have neither. I did my thing when my kids and I were much younger. Now, I'm just hanging on to every thread trying to care for Jon's continuously changing needs.

    It's just wrong that we have to fight so hard for what our children and we need. We should be respected and supported, as I said. We could just give up. But we don't. And we could do so much more, if we had the right resources.

    And powerful people working on our side.

    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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