Give disabled choice of home

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By MICHAEL VOLKMAN

First published in print: Friday, May 15, 2009
If you are a taxpayer in these hard times, then you will want to pay attention to this.
Medicaid, a health insurance program for people with low incomes administered jointly by the federal government and the states, is enormously expensive. For several decades now, Americans with disabilities have been pushing very hard to change an injustice within Medicaid that ruins people's lives and wastes your money.
The Medicaid statute requires all states to cover long-term care provided by institutions such as nursing homes, but does not require any state to support people to live in the community in their own homes.
New York is one of the few states that offer optional community-based services. However, the care available varies from county to county. For example, New York City and other urban areas can provide 24-hour coverage, while some rural counties only can afford to provide six or eight hours a week.
Twenty-seven states provide no community-based assistance, so people like me living in those states are taken from their families and shut away. Many other states restrict services and have long waiting lists to get them.
There are people who could live independently with just a few hours of aide service each day for less than $100, and others who need more hours but still could live independently. Instead, they are forced into nursing homes at a cost of hundreds of dollars more for each person for each day.
Disability advocates managed to get Congress to introduce bills in each house that would end this institutional bias and give consumers real choices with the full range of options for living in the community. These bills, now known as the Community Choice Act (HR1670 and S683), were first introduced 12 years ago. They do not move through the committees and get to a floor vote. They just sit there.
This year we thought we might finally get some progress. As senators, both President Barack Obama and Vice President Joe Biden were co-sponsors of the bill. During their campaign for the White House, they pledged that they would call for passage.
The Obama administration has made reforming health care a priority. It would make sense to include the Community Choice Act as part of this process.
The disability rights organization leading the charge on this is American Disabled For Attended Programs Today. At a recent series of meetings and rallies in Washington, ADAPT members encountered a very unexpected and very disappointing roadblock.
A small contingent of ADAPT leaders met with Nancy-Ann DeParle, the administration's health care reform czar. After that meeting, those who met with her quoted her as saying that the Community Choice Act would not be part of the health care reform and that we would just have to live with the institutional bias.
ADAPT responded by having several hundred people, mostly in wheelchairs, chain themselves to the front fence at the White House. Ninety-one people were arrested. Many veterans of these protests don't mind. One of their often-used rally chants is, "I'd rather go to jail than die in a nursing home."
Now the White House has changed the disabilities issues page on its Web site. Gone is mention of the President's intention to enforce the Community Choice Act. The new paragraph merely states that, "the President believes that more can be done to encourage states to shift more of their services away from institutions and into the community, which is both cost effective and humane."
Encouraging states to take the lead doesn't mean they will. If they wanted to, they could have done it years ago.
Is this really how the President feels about this issue?
Did he just give us lip service during the campaign?
Does he realize how many billions of dollars are being wasted every year to pay for a "service" that hundreds of thousands of Americans neither want nor need?
Congress has to act now. This is not just about money. This is also about freedom.
We can't keep wasting money this way. We can't keep wasting lives. And we can't waste another day.
Michael Volkman is a Capital Region resident and an advocate for people with disabilities. His e-mail address is mvolkman@nycap.rr.com.