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Posted June 13, 2012
Interview with Elaine Kolb, disability rights activist, conducted by Melinda Tuhus
On April 23, 74 disability rights activists were arrested in the Cannon House Office Building in Washington, D.C., there to protest the Republican-led House of Representatives' proposed plan to cut $800 billion from the federal Medicaid budget. The protest was part of the disability rights' group ADAPT's My Medicaid Matters Campaign. ADAPT used to stand for American Disabled for Accessible Public Transportation, but with the passage of the Americans With Disabilities Act in the early 1990s, that battle was largely won. ADAPT now stands for American Disabled for Attendant Programs Today, emphasizing the need for personal care assistance to help disabled citizens to remain in their own homes and not be institutionalized.
Actor Noah Wyle, a star of the "Falling Skies" TV program, was among the ADAPT activists to be arrested at the April protest. ADAPT says that like Americans of the past, disability activists are practicing nonviolent civil disobedience to prevent the nation from stepping backward toward oppression and segregation.
Elaine Kolb was one of those arrested in the April protest. She uses a wheelchair as a result of a stabbing injury many years ago. This was her 19th arrest since joining ADAPT in 1987. She is also a singer/songwriter whose work focuses on disability rights issues. Between the Lines' Melinda Tuhus spoke with Kolb, who explains why she participated in this latest protest, as she considers what the future may hold for Americans with disabilities.
ELAINE KOLB: This last time, the real focus was on the fact that the Republican budget that they've come up with would absolutely destroy Medicaid, Medicare and a lot of the services that all different kinds of people – but especially people with disabilities – require. This is a pretty big deal, because without Medicaid, most people with disabilities – low-income people with disabilities – will not survive. People will die. It's very simple.
BETWEEN THE LINES: The House Republicans are putting forward many bills they know will never get passed. How much was your demonstration an organizing tactic and how much do you really fear you'll lose these services?
ELAINE KOLB: It's already happening. You see, what most people don't understand is that Medicaid is a buy-in system. There are 50 different Medicaids in this country, because each state gets to decide how much of the federal program they will buy into with matching funds. So everybody has a different formula; some states are a whole lot better than other states, like some states provide dental care, some states don't provide any dental care. Now, theoretically, Medicaid provides dental service in this state, but it's almost impossible to provide a dentist who will take it. So even if you qualify – which is not so easy to do, by the way – then it doesn't mean you're going to get good care. So people are barely surviving, and all the cutbacks haven't even gone into effect – the ones that have already been set up in the different states around the country. So in some areas, for example, whole clinics have been closed, rehabilitation clinics. Rehabilitation clinics are for people with disabilities. Think of the safety net, okay. And what's happening all over the country is they're cutting strands of the safety net. The people that will fall through first are already falling through one by one, but it's by the hundreds and the thousands. If the Republican budget goes through, it will be the millions of people.
BETWEEN THE LINES: Elaine Kolb, that raises a question. How many people with disabilities are there in the U.S.?
ELAINE KOLB: Well, it depends on who cuts the cards, but they say something around 58 million people, and it's a growing percentage. So this is where it gets really, really terrifying.
BETWEEN THE LINES: Why is it terrifying?
ELAINE KOLB: Nursing home care is mandatory – states have to provide nursing home care. Services in the community – home care, personal assistant services, the stuff we're promoting – that's optional. So when the states are trying to balance their budgets, where do you think they make their cuts? Well, yes, they limit or cut back on home care services...or respite care, because a very high percentage of the care that's provided for people with disabilities is provided by spouses or family members. In most states, those people can't receive any payment for providing the services that they do, so in some cases the only way they can actually provide services for their loved one who has a disability is to...in some cases, parents have to, you know, give up their children, because they can't do it anymore. Or people end up going into a nursing home, or in a mental hospital or, you know, there are different kinds of institutions. And a very high percentage are now in prison, or there's other kinds of institutional settings, too, like there are group homes – some are good, some are not so good. There are developmental disability places, I mean there's a range of institutional settings that people end up in.
BETWEEN THE LINES: I imagine over the past ten years a much greater proportion of people with disabilities in this country are veterans.
ELAINE KOLB: Absolutely, but once again, the whole system is so disjointed, and a lot of disabled veterans end up spending years trying to get services, because they haven't been designated as having a disability. There are still people that are dealing with Agent Orange, for example, from the Vietnam War, that were never officially considered to be disabled, so they didn't qualify for services, and of course now what's happening is the very high percentage of soldiers who are coming back who have very severe post-traumatic stress syndrome, and chronic head injuries. It's the same thing here, in this country, but a lot of the people who have those similar sorts of injuries or disabilities are because of the horrible crime and violence in this country – in our homes and on the street.
BETWEEN THE LINES: Does the disability rights movement make common cause with other groups, especially other groups promoting health-related reforms?
ELAINE KOLB: Yes, we try to build coalitions, but unfortunately, it seems most organizations, even if they're considered progressive organizations, are still themselves caught in the old charity approach to disability and really have not recognized that this is a civil rights issue.
Find more information on ADAPT at ADAPT.org.
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