Perriello & Bennett: Penny-Wise, Pound-Foolish for Americans With Disabilities

Let’s consider a future where Medicaid as we know it has ended.

It’s 2015 and essential programs that support 8 million Americans with disabilities were gutted.

A 40-year-old woman sits in her bed in a nursing home. When she was 25, she was diagnosed with multiple sclerosis. At 30 she was in a wheelchair.

Medicaid once paid for a personal care attendant who helped transfer her from her bed to her wheelchair. This made her life in the community possible. She once worked at an independent living center and volunteered with organizations that serve people with disabilities. That was before her government told her that her contribution wasn’t valuable by cutting funding for her aide.

In 2015, her nursing home care is costing taxpayers more than Medicaid and Supplemental Security Income from Social Security ever did. She has lost her basic dignity, and we have gained nothing financially.

A mother from Ohio stays at home with her 26-year-old son, who has Down syndrome. Before Medicaid was cut, she worked full time, paid taxes and contributed to her community as a volunteer. Medicaid made that life possible by providing support services for her son. Now she stays home to care for him but is forced to consider putting him in a nursing home so that she can return to work to pay her bills. This choice is heartbreaking for her because she knows her son’s quality of life would suffer and he would no longer be able to do many things he enjoys, such as volunteering. Either option, of living off public assistance or institutionalizing her son, will cost taxpayers more money than Medicaid services did in 2011.

These are two possible scenarios for real people we know if leaders in Washington, D.C., cut essential programs for people with disabilities. And American taxpayers will get no grand bargain in the process. Disability is a part of life, and people with disabilities are a part of every American community. Our deficit reduction decisions cannot change this, but they can deny people the opportunity to live the independent, productive lives that are their right.

We can reform essential services for people with disabilities and save taxpayer money without limiting opportunity. We welcome reforms that include programs that support life in the community rather than in nursing homes and initiatives that make it possible for more Medicaid recipients with disabilities to work. These real reforms can produce real savings and protect the dignity of real people.

A more thoughtful debate is in order.

That’s why the American Association of People with Disabilities and United Cerebral Palsy have convened a shadow super committee called “America’s Supercommittee.” Our committee is looking at how to reduce the federal deficit without doing it on the backs of the most vulnerable. The members are real people and they or their loved ones will be profoundly affected if Medicaid services get slashed.

While Medicaid doesn’t have an army of Washington lobbyists defending it, the majority of Americans do not want to see the program eviscerated. In fact, an April Washington Post-ABC News poll found that 69 percent opposed cuts to Medicaid to reduce the deficit.

People with disabilities suffered another blow when Health and Human Services Secretary Kathleen Sebelius announced that the Community Living Assistance Services and Supports Act, which would make long-term care insurance accessible to millions of Americans, would not be implemented. The White House subsequently indicated that it did not want to repeal this vital program, but it is already under attack. Without the CLASS program, Medicaid is the only option for many people who need long-term care.

Rather than dispensing with the law, included as part of the 2010 health care overhaul, we urge continued dialogue and development of a viable path forward. The need to address long-term services and supports and how these services will be paid for in a way that is affordable to individuals and society as a whole will not go away. Families will continue to need a workable long-term care option to protect themselves, and a path forward is essential because the need for these services will only continue to grow.

Any deal reached by our leaders must recognize the intrinsic value of all of America’s citizens and ensure that Americans with disabilities and our loved ones are able to continue contributing to their communities. Then, and only then, will we set this country on a firm path toward recovery.

Mark Perriello is president and CEO of the American Association of People with Disabilities. Stephen Bennett is president and CEO of United Cerebral Palsy.

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