UPDATE: 12/15/13
Tami Weber passed away yesterday, surrounded by her family. In just three short weeks, Tami was to be sworn in as the newest member on the board of directors of WI Voices. She was a fearless advocate for persons with disabilities and also a passionate Packer fan. Her wisdom and perspective will be greatly missed. Rest in Peace, our friend, Tami Weber.
Original post: 5/24/13
Tami Weber has lived in Wisconsin’s Senate District 10 her entire life. Now in her forties, she grew up in the late Senator Gaylord Nelson’s village – Clear Lake. Tami now lives in a modest apartment in River Falls. She told me that due to impending budgetary cuts in Gov. Walker’s Budget Repair Bill, supported by Senator Harsdorf, she may soon find herself living in a nursing home. You see, Tami is quadriplegic. And the changes coming at the state level are eroding the structure upon which Tami’s life is based.
Here’s her story.
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Have you had a chance to travel much?
As kids we did the Glacier thing, Mt. Rushmore thing…the last 20 years I’ve gone to Vegas multiple times. I’m not a gambler, plus I have no money, but the people watching is phenomenal. I could just sit on a bench all day, watch people and chuckle. I also like to sit by the pool with my sister-in-laws and friends.
A little history, is that I have a rare metabolic neuromuscular disorder that stems from an error in my DNA which leaves me obese and functionally a quadriplegic. When I was in high school I was in some sports and extremely active in many organizations. By the time I was 21 I had my first wheelchair. For the most part, I try to have a positive outlook because people don’t want to be around those that are crabby…and having a pity party serves no purpose…and that’s not who I am.
With that said, there are days that I get real down and look around and I want what everyone else wants, you know – kids, family and career. I have my bachelor’s degree and started my masters. I think my ultimate dream job was press secretary for some Governor or Senator…public speaking was really my forte. I do a lot of advocacy work…try to bring awareness to anything from how to treat people with disabilities to how things could be improved in the community for those who are disabled.
One of the things I like to do is try to teach those around me. As an example, I like to go to ShopKo and it is really interesting…kids are so fascinated with my power wheelchair. They like the wheels and they are also wondering “why can’t she walk”? Kids could care less, and so I start talking to them. But a lot of the times it is the parents who are telling their kids “don’t stare” or “don’t look”. And I say “Oh its ok” and I try to educate both the parents and the children about disabilities.
What exactly is going on in your world right now?
There are many ideas and some rumors floating around regarding portions of Medicaid. Walker is trying to freeze, or else limit funding, for the “Specialized Transportation Program.” At best, this will make transportation significantly difficult. To get to my medical appointments at Mayo [Clinic in Rochester, MN] I need to use a specialized transportation company [Handi-Lift]. First of all, they [Walker and supporters] forget about NW Wisconsin. The [Handi-Lift] company gets paid for the initial pick-up and by the mile. If the funding is frozen and gas is high, companies will have to start billing more.
Walker is also trying to limit the transportation companies from crossing state lines. If I couldn’t go to Mayo, I would have to go to Marshfield or Madison. Now, door-to-door to the Mayo Clinic is 70 miles. Marshfield is 3 hours from here, Madison is 3 ½ hours.
So instead of going to Mayo, you’d have a 7 or 8 hour trip in the van, not counting the extra money spent for personal care workers. Not only does that seem to be a complete inconvenience for you – but also an ineffective cost scenario because of the number of miles the taxpayers would have to pay in gas alone.
Exactly. And not to mention that I have personal care workers that instead of getting me in the van by 7:30 or 8:00 in the morning, I’d have to be in the van by 5:00. So let’s talk about tax payer money. If you start adding more co-pays and start decreasing the medical benefits, clinic visits may go down, but ER visits will shoot through the roof. The other people in the community will suddenly have to start paying more to eat those costs of ER visits.
[Tami’s monthly income of $777/month from Social Security is quickly consumed by rent, utilities, food, medical co-pays, etc.]
What would it mean to you if all of these policies in the Budget Repair Bill were enacted?
If Walker’s budget repair bill goes through I most definitely see myself in a nursing home within two years. If you cut my general healthcare (Medicaid), funding to my personal care workers, and my transportation – what choice do I have? Then add Congressman Paul Ryan’s purposed cuts to my other insurer, Medicare….a nursing home is most definitely going to be my only option.
I’m 44-years-old. I’m college educated…a completely cognitive individual. Is a nursing home really the appropriate place for me? Not too long ago the big push was to keep people in their homes. This isn’t 1950. They let us out of institutions for a reason. And as I’d like to say, “You let us out – you can’t push us back in.” Contrary to what Mr. Walker would like to do to us; this is 2011 darn it, and we have just as much right to live where WE want! People should be able to live among their peers.
[Tami is one of 61,000 of Wisconsinites that needs Medicaid to remain in the community of choice rather than an institution. She asserts that she is less expensive for the tax payer in her own home. She tells me that her personal care workers earn $12/hour and are on hand for her 11 hours/day. Using those figures quick math puts the current cost for tax payers at a little over $48,000/year for Tami. In comparison, according to Special State Report From Families, nursing homes in Wisconsin average $81,400/year.]
How does Walker’s phrase “Wisconsin – Open for Business” make you feel?
Yeah – if you have a lot of money – come off it…let’s keep taking things away from the most vulnerable…let’s put people in institutions where they can’t be seen. He wants to decimate the middle and lower class…absolutely decimate it.
I have fought so hard to stay in my home and keep good personal care workers who respect me. It’s not easy to have people come in and bath you and dress you, feed you. And sometimes it can be difficult because I feel like I have a revolving door of workers. But, it is still a choice for me and better than being in a nursing home. If I want to go for a walk in the park – I can go. All of my nieces’ and nephews’ birthday parties and family holidays are here. Would I still be able to do all of that if I were in a nursing home?
And, I know what I’m talking about. I’ve been in a nursing home – for a month when I was 27 and recovering from major surgery, I was there for 4 weeks. It is not a place for a younger person who is fully cognitive. You start getting up at 5:00 a.m. because the aides have so many people to get up that they have to do that. The aides, bless their hearts, do the best they can. Then after breakfast the CNAs lay everyone down for a nap. Suddenly, they thought that I needed a nap, too. Then, they get everybody up for lunch. Then back down for a nap. Absolutely no privacy or dignity–just the nature of institutional life.
Now, I have freedom to walk out that door whenever I want to. Once in awhile I like to have some friends over – say a Friday night and we play board games or watch movies…I might have a couple of beers, I might have a couple of wine coolers. On a warm summer evening I like to sip on brandy slush and watch a ball game. I’m a sports fanatic. In a nursing home all of your clothes are written on too – so they know who it belongs to. I am picky about some of my clothes. Should we label all of your clothes Governor? Or maybe we should have his meals unseasoned and “soft” just for starters.
Sound bites coming from the Governor’s office suggest that folks have to demonstrate an ability to adapt.
How much more adapting are we suppose to do? How much more adapting? Our whole life is about adapting. Our whole life. I can tell you right here and right now, that my health would get worse, faster, because I would have no purpose and no will to live. How would you like your basic dignity taken away?
What is your sense of Senator Harsdorf who was just recalled and is now facing a special recall election?
(Pause) Do you have 8 days?
(Laughing) Have you ever met her?
Ah, it is funny that you should ask that. Sheila and I are personal friends. Sheila has been in my home numerous numerous times. We’ve made dinner together, gone on walks together! She has said, “You are such an inspiration” or “I’m so proud of you.”
I take this whole thing like a slap in the face. And not that I expect her to change her vote solely because she knows me, but do I think that she gave one second thought to me? Not at all. I’ve given her numbers on how keeping me in my home is cheaper. And it is cheaper. I’m on a program called “SDS” (Self Determined Support) which means I get to decide who I hire and who I fire. I get to decide a lot of my life instead of having a county social worker or home health nurse do that – which also saves a lot of money. I fail to see why I should not have all of the same choices as to where I live. There is no reason that I shouldn’t have say in my life – absolutely none. Somehow I don’t think that she gave one second thought to me. I’ve tried to call her and she has not returned one phone call of mine. I completely understand that Senator Harsdorf is incredibly busy, but she’s got to know how I feel about this.
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Policies of Gov. Walker and Sen. Harsdorf call for a shared sacrifice among all Wisconsinites. But I can’t help but wonder how much one human can be expected to give? Tami is a happy, productive member of society. If the impending cuts to her medical care, personal care workers, and transportation are enacted – moving into a nursing home would be the only way she could have her basic needs met. Then, her human need for self-determination and choice will seem a luxury. Tami’s personal story illustrate that these policies may not only be more costly for the tax payer, but also exact a human toll which cannot be quantified. So, once again Tami asks, “Is a nursing home really the appropriate place for me?”
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Tami sounds like an amazing woman. Another sad story about how devastating Gov. Walker’s “plan” will be to our people with disabilities. It is so scary. Thanks Heidi for another wonderful interview.