'Be involved in politics as if your life depends on it … because it does," said the late Justin Dart, who pushed hard for the Americans with Disabilities Act and was a tireless advocate for people with disabilities. That phrase has never been truer than right now, the 2012 presidential campaign.
My son was born with a neuromuscular disease and needs a ventilator to breathe. Even though he is vent-dependent, he can use a Medicaid waiver that enables him to live at home with a family that cares for him, a community that values his contributions, and at far less cost than institutional care. In his case that would be hospitalization at more than $10,000 a week. And yet my son has already lost all personal care assistance under Medicaid cutbacks. So now when he has a doctor's appointment, he must go by ambulance — at an astronomically higher cost to taxpayers than before.
Nationally, Medicaid serves about 60 million people — roughly 10 million more than Medicare. Two-thirds of all Medicaid spending is for seniors and people with disabilities. In Florida, Medicaid insured more than 3.5 million people, or nearly one out of five of our state's residents.
No one chooses to be disabled. My 31-year-old son Michael certainly didn't. But the reality is that we are all one wrong step off a ladder or one car accident away from being a member of a group whose voice is so often unheard and unthought of.
Families of those caring for a loved one with a disability don't ask for much. In fact, they give of themselves in a way few can understand. Yet, theirs is not a story of burden. It is a story of love. It is a story of commitment and principle and standing up for those who cannot stand up for themselves.
Families also have an economic value. According to the American Association of Retired Persons, if a dollar figure were affixed to the amount of care family members provide as "natural supports," the estimated economic value of families' unpaid contributions would equal roughly $450 billion. Until someone creates a day longer than 24 hours, families are doing all they possibly can.
People with disabilities being served in Florida through the Medicaid waiver program have already experienced service reductions and eliminations that have severely affected their quality of life. These cuts aren't just taking away services; they also are taking away any hope recipients had for living independently and participating in inclusive settings that allow those with disabilities to live naturally in their communities.
Also, Florida has a governor who refuses to implement the Affordable Care Act, which calls for the expansion of Medicaid and greater flexibility for beneficiaries to receive care at home or in settings of their choice. Studies have shown that home and community-based care can lead to better health outcomes and at a far lower cost than care in more restrictive environments.
Under Republican vice presidential candidate Paul Ryan's budget, projected federal spending on Medicaid would go down by about $800 billion over 10 years. The Ryan budget is in sync with Mitt Romney, who believes that "states can better design programs that effectively serve those in need," according to a Romney campaign spokeswoman. The cuts would result in millions of America's most vulnerable losing their health care.
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President Barack Obama has shielded Medicaid cuts in budget negotiations and has proposed new ways to allocate funding that could reduce the federal share, whereas the Ryan plan proposes a block grant. The big question under a block grant system is: Would people with disabilities still have a legal right to coverage?
This presidential election will have a great effect on care for people with disabilities. President Obama believes that "all Americans — including people with disabilities and seniors — should be able to live at home with the supports they need, participating in communities that value their contributions — rather than in nursing homes or other institutions." Does our governor? Does his party?
Karen M. Clay of Tampa is a statewide parent advocate for the disabled. Her son, Michael Phillips, was featured on "Escape," an Emmy-Award winning episode of NPR's "This American Life."