The right-wing noise machine has continued to crank the outrage for those poor Wisconsin Special Olympics athletes, whose ceremony with Governor Walker on the Capitol Square was visited by some zombie-protesters who turned their backs on the governor. (I diaried a few days ago about what REALLY happened there.)
Now a group of Wisconsin Special Olympics athletes have had their say, in a public letter to Governor Walker. And, after thanking him most graciously for his support in the past, they make it very clear that he needs to support them NOW, by lifting the budget-imposed caps on new enrollees in community long-term care.
The letter is short; I'll quote it in its entirety.
As Special Olympic athletes, we appreciate Governor Walker’s support of
Special Olympics. He has been on TV talking about how much he admires our accomplishments. For this we thank him. His support of Special Olympics means a lot to us. We want Governor Walker to know there is another issue that we need his support on. In addition to being Special Olympics athletes we are all also members of People First Wisconsin which is a statewide grassroots self advocacy organization run by and for people with disabilities, especially intellectual disabilities. We don’t want Governor Walker’s budget to put caps on Family Care and IRIS. These programs help people like us live and work in the community. If you support Special Olympic athletes, please Governor Walker do not cap the money in Family Care and IRIS that helps us and could help so many others in the next two years to be independent and contributing citizens in our communities.
The letter is signed by 15 athletes who, as the letter says, are also members of People First Wisconsin. The contact person and first signer on the letter is Cindy Bentley, a true Wisconsin hero who rose above her early years in an institution to become a Special Olympics champion and passionate self-advocate, who has met with heads of state both domestic and foreign. I've heard Cindy speak -- she's amazing. Her story has been told in the children's book "Cindy Bentley: Spirit of a Champion." I recommend it highly! When Cindy Bentley takes a stand, people would do well to pay attention.
Until this past week, the caps on Family Care and other community long-term care funding were flying under the radar, totally overshadowed by the legion of other outrages in the Wisconsin budget. Wisconsin had been making great progress in providing assistance for people with disabilities and frail elders to live in the community instead of institutions or nursing homes. With the right dollars in the right places, it's MUCH cheaper to fund community-based supports -- and it gives people like Cindy, who once was thought to "require" institutional care, the option to live a full life and work with dignity.
The Walker budget tells the young Cindys of this state, just graduating from high-school: Congratulations, and welcome to the waiting list. If this budget passes in its current form, there will be NO NEW ENROLLEES in these vital community support programs. The only new-enrollee funding is for crisis situations -- and only for nursing-home care.
In a recent survey, families of people with disabilities "were asked about both economic impacts and the health and emotional impacts related to the longterm care of their loved one with a disability."
The results?
The stark results show the following economic impacts:
-- More than 85% of respondents say that a lack of supports as their sons and daughters leave high school and enter the adult system will create economic hardship for their families.
-- Six in ten say their family will experience job loss (in order to provide care).
-- 60% said they would have difficulty paying for basic monthly needs (e.g. food, shelter, utilities).
-- Nearly three in 10 would lose health care coverage due to being forced to reduce employment.
-- Two‐thirds say their son or daughter would lose important work‐ and independent‐living skills they learned in school and more than six in 10 say their son or daughter would now be unable to work.
When asked about the potential health and emotional impacts on their family due to a proposed freeze on longterm care:
-- Nearly all (92%) say their family would experience significantly increased stress.
-- 62% say they or another family caregiver would experience significant deterioration in mental or physical health.
-- Nearly half say their son or daughter with a disability’s health would deteriorate.
-- 65% say their son or daughter with a disability would be unable to access the community (e.g. friends and activities).
-- Nearly 80 percent say their son or daughter would experience challenging behaviors or depression with no meaningful activity during the day.
-- 82% say concern about caring for their son or daughter would keep them up at night.
Nearly 4 in 10 say they would no longer be able to care for their son or daughter at home.
A press conference on Thursday, coinciding with the release of these results, was filled with passionate accounts from families, educators, administrators, and legislators -- all pleading for the lifting of the freeze. (We got an excellent write-up in Madison's Capital Times.) Rep. Peter Barca and Rep. Brett Hulsey stood with us and are fighting on our behalf. Even some Republican legislators have been quietly raising questions about this heartless, counter-productive budget provision.
But the Republican leadership has called the legislature into "extraordinary session" and plans to ram the budget and goodness-knows-what-else through, with as little debate and as little amelioration as possible.
My girls and I, including my future Special Olympian and potential Family Care recipient, will be on the Square this morning as the budget travesty moves forward. And the Republican majority in the legislature will continue to turn deaf ears to us, and to Cindy Bentley and her fellow Special Olympics athletes, as the right-wing noise machine continues to demagogue in their names.