In transitioning to full time work for Not Dead Yet, I’m bringing my last fifteen years of independent living and health care advocacy experience. I’ve served on a number of boards and committees related to achieving universal health care, protecting and improving health care access for people with disabilities, and reversing the institutional bias built into Medicaid long term care, aka long term services and supports.
It’s probably obvious to most that quality health care is generally important in helping people live well while managing serious chronic conditions, whether they are considered terminal or not. What may be less obvious is the role that long term care policy plays in how people feel about their lives, their relationships and their options.
The Oregon assisted suicide reports are at best thin and superficial, but the doctors who prescribe death-causing drugs indicate that 35 percent of the individuals had “feelings of being a burden.” That’s pretty much a long term care issue.
The infamous case of Kate Cheney makes this point painfully. Ms. Cheney got a lethal prescription in Oregon, in part at the urging of her caregiver daughter. However, she didn’t take the lethal dose until after her daughter put her in a nursing facility for a week so she could have respite from care-giving. Ms. Cheney was effectively given the “choice” of feeling like a burden, being confined in a nursing facility or dying sooner than she otherwise would.
While there are many aspects of long term care that disability rights advocates address (e.g. consumer direction, home care worker training, pay and benefits), the overwhelming majority of advocacy effort is focused on stopping the crushing civil rights violations of a system that is all too quick to shuttle people off to nursing facilities and institutions.
In the public discourse leading up to this week’s deal on the debt ceiling and budget deficit, senior groups kept Social Security and Medicare front and center, but Medicaid was not often mentioned. Over the years, I’ve learned that a surprising number of people mistakenly believe that Medicare covers long term care. But when the time comes that a person needs long term care, all but the well off in our society discover the crucial role of Medicaid in meeting this basic and very human need.
I was just on a national conference call about the “debt deal” and Medicaid, because Medicaid is only exempt from budget cuts if the soon-to-be-appointed Congressional “Super Committee” fails to act or if Congress rejects their plan. One of the conference call speakers said that in the upcoming “Super Committee” negotiations, there is a “bull’s eye” painted on Medicaid.
Moreover, the Super Committee will not just be crunching numbers, it will be writing Medicaid policy. In an aging society, it’s difficult to imagine how cuts to Medicaid would not amount to an unconscionable abandonment of seniors and people with disabilities who need long term care, and many of our family members who do what they can but need help to keep the family together. Whatever happens with the debt deal, we must find ways to stretch Medicaid dollars further to meet this growing need.
The leading disability rights group ADAPT has been pushing four proposals to reform Medicaid by reversing its institutional bias:
- Expand the use of home and community-based services.
- Demedicalize services, reducing over-reliance on skilled nursing for routine daily tasks.
- Expand consumer directed service options, reducing over-reliance on professionals.
- Reorganize services based on functional needs rather than age or diagnosis to reduce wasteful and duplicative bureaucracy.
It’s critical that we put these proposals squarely and forcefully before the Super Committee.
To do just that, ADAPT is spearheading a Rally for REAL Medicaid Reform in Washington, D.C. on September 21, 2011 at noon. Not Dead Yet is a Rally co-sponsor and we urge people to attend and help to boost turn out in every way possible. For more information, including materials and contacts to help organize folks from your state, go to http://www.adapt.org/main/medicaid_rally .
Before Not Dead Yet existed, in the late 1980’s, ADAPT spoke out in what we have come to call the “Give Me Liberty or Give Me Death” cases, in which men using ventilators sued for freedom from nursing facilities or, in the alternative, death (David Rivlin, Kenneth Bergstedt, Larry McAfee). ADAPT filed friend of the court briefs in some of those cases, arguing the right to liberty. Nevertheless, courts in state after state articulated what was then a new right to “pull the plug”, no questions asked, and completely ignored the plea these men made for freedom from institutions.
For the disability community, it is as clear now as it was then: threats to Medicaid, and the home and community-based services it supports, are a Not Dead Yet issue. – Diane Coleman
