Health Care Reform and the Disability Community
As we speak, Congress is deliberating on vast and important changes to the system of health care in the United States. This issue is one of crucial importance to all Americans, but of particular interest to those Americans who interact with public health insurance more than almost any other group -- people with disabilities. Ranging from veterans with disabilities who receive care through the Veteran's Administration health care system to the many low-income disabled adults who are eligible for Medicaid, the disability community interacts with the public health care infrastructure in the United States in a wide variety of ways. As we consider how to reform, streamline and expand that infrastructure through any of a variety of means, it is incumbent upon us to remember the key issues for making sure that health care reform doesn't leave disabled adults and youth behind.
1. Long Term Services and Supports (LTSS): Ever since the passage of the Americans with Disabilities Act 19 years ago, the main priority of the disability rights movement in the United States has been eliminating the institutional bias in Medicaid. This bias imprisons Americans both young and old in nursing homes and institutions in order to get the basic services necessary to survive. This is both tragic and unnecessary. Individuals and families are forced to choose between having to fend for themselves or living out their lives in institutional care. Both research and the experience of countless people with disabilities show that, with the right support, people can live in the community rather than be relegated to institutions. Community living settings, when properly implemented, improve quality of life, reduce the risk of abuse, make it more likely that a person with a disability will be able to work and are actually much less costly than institutional care.
Right now, the main obstacle to LTSS reform is the bias in Medicaid long term care policy which reimburses states for costly and segregated institutional care but makes it extraordinary difficult to use the same money to support adults in the community instead. A person who uses a wheelchair or an adult with a developmental disability such as autism or Down Syndrome can get the government to pay for a costly institutional placement with low quality of life, but often must spend years on a waiting list for far less expensive services, such as attendant care that could keep them in their home or their family's. The abuses that take place within nursing homes and institutions are well documented and are truly shocking. This situation benefits nobody but lobbyists for the nursing home/institutions industry, which has been quite active in opposing reform on this issue.
The Senate Finance Committee has recognized the need for some action on LTSS, but so far has only recommended limited reforms like increasing the federal Medicaid reimbursement for Home and Community Based Services by 1%. The real answer can be found in the Community Choice Act, which would add a benefit to Medicaid that would require states to allow people who meet an institutional level of care to instead control their own supports while choosing to live at home or with their families. President Obama won kudos from the disability community by supporting the Community Choice Act during his campaign, but since then the White House has signaled that this issue will not be considered as part of health care reform. The Community Choice Act should be properly considered a civil rights issue, as it means the difference between segregation or integration for millions of disabled citizens as well as many senior citizens for whom LTSS reform may be what keeps them out of a nursing home and living a life of dignity. Health care reform that fails to include this issue is health care reform that fails to meet the needs of over 50 million Americans with disabilities.
2. Health Care Disparities for People with Disabilities: Both Congressional leaders and the President have talked about the importance of addressing health care disparities on the basis of race, income and geography. But what about disability health care disparities? Too often, medical problems faced by people with disabilities are assumed to be normal and unavoidable as a result of being disabled. However, disability and ill health should not be considered synonymous. People with disabilities face significant barriers to access quality health care, due to both poverty and accessibility problems. In addition, most physicians lack necessary expertise on common co-existing medical issues that people with disabilities of various kinds face.
For Autistic adults and children, who often have sensory hyper- and hypo-sensitivities as well as trouble with social and/or verbal communication, communicating medical problems can be exceedingly difficult. For people with Down Syndrome and other developmental disabilities, a doctor's expertise on co-existing medical issues can mean the difference between living full, meaningful and fulfilling lives or facing an early death due to preventable secondary conditions. For Deaf people, getting access to sign language interpreters in hospitals and doctor's offices is often exceptionally difficult. For many wheelchair users or people with other mobility impairments, even getting in the door to the doctor's office can be a problem. If they can, they often face inaccessible examination tables and other medical equipment that prevents them from getting the same medical care available to any other person. One woman with a mobility impairment was told by her physician that the scales they possessed were inaccessible to people with her disability, but that she should consider going to the post office and being weighed on the scale for large packages instead!
Respectfully, people with disabilities are not postal mail. It is disturbing to think of the number of preventable medical conditions caused by lack of access to appropriate medical care. This is imposing a cost that can be measured both in terms of quality of life and dollars spent later on preventable secondary medical conditions. Congress must recognize people with disabilities as an underserved population subject to health disparities by undertaking both data collection and serious policy reform to ensure that issues of access, expertise and coverage are address for the disability community.
3. Insurance Discrimination: According to the Executive Director of Access Living, a Center for Independent Living in Chicago, and past Chair of the National Council on Disability Marca Bristo, insurance discrimination has been one of the single largest obstacles to full integration of people with disabilities in society. States have tried to address this matter with a patchwork of insurance mandate laws, virtually all of which have represented disability and methodology-specific approaches that do not come close to comprehensive reform. As Congress determines the structure of our updated health care system, it is important that obstacles to access, such as pre-existing conditions, as well as obstacles to coverage, such as the refusal of many insurance companies to cover "habilitative" care for children and adults with developmental disabilities, be considered and addressed.
4. Stop discrimination in the provision of care: Too often, people with disabilities are denied necessary -- sometimes even life-saving -- medical care because of assumptions that non-disabled people make about our quality of life. For many people, disability is still considered a fate worse than death instead of a part of the human experience. As a result, it has been disabled people who are pushed over the side first when resources become scarce. As recently as last year, a task force including doctors from the Centers for Disease Control and Prevention, the Department of Homeland Security and the Department of Health and Human Services issued guidelines stating that, in the event of a flu pandemic or similar emergency, people with intellectual disabilities as well as those with chronic health conditions may be excluded from care.
The eugenic impulse that views people with disabilities as "burdens on society" or "life unworthy of life" is still regrettably alive and well within our health care system. Just last week, Disability Rights Wisconsin, the state's protection and advocacy system for people with disabilities, filed suit against the University of Wisconsin hospital as a result of their decision to withhold medication and basic nourishment from two patients with intellectual disabilities who had pneumonia. These individuals were not in a persistent vegetative state, were not dying and one even asked for food. The decision to refuse anti-biotics, nutrition and fluids for a treatable medical condition was made by hospital officials based on their determination of "quality of life" for the individuals in question. Health care reform must include non-discrimination protections that prevent these types of atrocities by health care providers.
These concerns are also relevant because of the likelihood that cost containment measures will be included in the health care reform initiative. Congress should avoid repeating the highly controversial Oregon Health Plan of the early 1990s, whose priority list of services ranked medical conditions in order to ration out care on the basis of a government determination of severity. Americans, with or without disabilities, deserve not to be pitted against each other in their efforts to obtain the health care services they need. With limited resources, Congress will need to make difficult decisions - yet discriminating against people with disabilities in the provision of health care services should never be considered an acceptable option.
One of the key critiques of the Disability Rights Movement has always been that, for many of us, the problems we face are not inevitably associated with whatever condition or diagnosis we may possess but are as much the result of societal discrimination in the form of infrastructures that were built without consideration that people like us might one day use them. Nowhere is this issue clearer than in health care. A health care reform agenda that includes these concerns can drastically improve the lives of many millions of Americans. One that simply reinforces the status quo will represent yet another wasted opportunity. It is no longer acceptable to doom a considerable portion of the American populace to more discrimination, more segregation and more disparities in access to meaningful health care.
Disability has often been called the great equalizer -- our community reaches throughout every racial, religious, gender and political classification. Furthermore, though we are wide and varied, including both people with acquired disabilities, such as many of our brave men and women in uniform coming home from overseas, and others who were born with their disabilities, such as myself and the rest of the Autistic community, we can unite around our common dream for full participation, inclusion, integration and equality of opportunity for all. The disability message is a civil rights message. It is time for Congress and the President to hear our voices: Nothing About Us, Without Us!
Loading comments…
Want to reply to a comment? Hint: Click "Reply" at the bottom of the comment; after being approved your comment will appear directly underneath the comment you replied to
It frightens me to think that no matter how far my son has come with his overall health and success in school, he could be on the list of people to overlook in a pandemic. Keep up your efforts, Ari. People are starting to take note. We won't be going away anytime soon.
Hey this is great!
There are 50 people with disability plus their families.L
Mr. Ne'eman thank You, for this timely article. You address many concerns caregivers of the disable experience all the time, I believe until society sees the disable as people who need a helping hand this injustice will go on. You really gave a good description on some of the handicaps that an autistic child may have, especially in the area of communication as a caregiver to an autistic young man I have found that doctors sometime don't really want to listen to the caregivers about the child with the disability, and let me clear this up not all doctors but some I have found that they are not good listeners when you are telling them about the child and what prescription seem to be affecting the child in a negative way. I have found that I have to be adamant about what I want done. Thank you, again for this article.
Arzu Forough, Washington Autism Advocacy
Our foster son, 22, has moderately severe cerebral palsy and developmental delays. He was taken to the ER when he grew too tired to successfully clear a mucus plug through coughing. Before we left the next day, I had to insist on a chest x-ray and script for augmentin to ward off potential infection. The Dr. complied and told us the chest x-ray was clear. After the 5-day course of augmentin, JD took a turn for the worst. We were back via ambulance.
We found out that the x-ray he'd had before release was not clear, but was deemed inconclusive. He was so sick that the Dr. wanted info on advanced directives. The Dr. also stated that he would be reluctant to use a respirator on DJ in a way because his quality of life was marginal. So untrue. His last pneumonia was nine years ago. This young man is a bundle of joy when he's feeling well and an inspiration to many. Dr. also said that he wouldn't allow his young daughters to experience a fever without medicating them and having them see a colleague of his. Luckily, DJ recovered and was out of there ASAP. We filed complaint, but the assumption that his life wasn't worth living and wasn't worth fighting for in the most rudimentary of ways just blew my mind.
Health care in this country is all about business, and that has totally corrupted it...I am sure there are thousands more stories...
I'm horrified for you just reading that.
How terrible.
Thank you for fighting for him. :)
It is horrible that in a civilized world, things like this continue to happen. Thank you for standing up.
I have a relative in a group home in NYC called Finson on 16th St in Manhattan. . The manager Curtis Walker,is a homosexual who has been known to have "conditioned" sex with male consumers and gives showrs while he is in the nude. This is an AHRC Facility. The abuse that goes on in these homes is well known and atrocious. The laws passed that is supposed to safeguard the rights of these people is totally insufficiant
Fabulous piece. This issue does not get enough attention, especially given that at some point every individual &/or family is effected by it. There is still so much stigma & so many goofy assumptions attached to being able to live well with a disability. But maybe the time has come for true progress. Hope so. Lots of people have been waiting for decades!
I am beyond livid that it took nearly 3 days for this to make the main page. This should have been a feature main page issue
It is so rare to see a blog on disability, especially a sensitive, understanding presentation of the issues. I would like to add that the disability community needs assistance in lobbying the Obama Administration and Congress for the United States to sign the Convention on the Rights of Persons with Disabilities. The Bush Administration did not sign the Convention [paraphasing what the Bush Administration stated], saying that the disabled have protection in the law in the US and the Convention is unnecessary. The Convention was more than 10 years in promogation and the stakeholders, the disabled, where part of the process. They listened to stakeholders on a global basis and the result is a Convention that does assist in filling in the gaps in the law and makes it clear the problems we suffer.
Disability issues have a range and scope from those of us with invisible disabilities, such as cancer, AIDS, inflammatory bowel disease, heart disease, to those of us with visible disabilities, that Ari has written so sensitively about. Hopefully, we can join together to articulate our position in the political process in the health care reform debate that can move beyond the type of attitudinal handicapps so prevelant in the United States that prevent disabled people from fully participating in life.
Great Article. In California the workers compensation medical treatment guidelines tend to exclude the treatment that helps disabled workers from entering or staying physically capable of being in the labor market. I liken these guidelines to the torture memos. How to refuse medical treatment already provided for in previous contractual agreements legally or how to breach a contract without being sued. The long and the short of it is that the new guidelines just wiped away the State's duty to provide medical care for industrial injuries to a large majority of disabled workers who need ongoing treatment for chronic conditions. Why? to save money of course.
The disabled are kicked to the curb even though many of them were public safety officers. Disgraceful!
And those are workers who probably have lawyers to plead their cases in court against the state. If you're economically disadvantaged, and don't have the $$$ to hire good lawyers, or you want to retain your dignity and self respect and not have a judge put in charge of your medical care in the first place, then Lord only knows what your fate will be
As a woman who spent her teen years confined to a wheelchair and the mother of one child who is autistic and another who is deaf I have to say that the state of health services for the disabled is horrifyingly abysmal.
We, both the able bodied and the disabled, cannot ALLOW "health care reform" that does not INCLUDE ensuring that the disabled receive necessary care, at a level that ensures that the medical needs that they have are met and that their quality of life is not further eroded; regardless of where they live OR who is ultimately paying the bill for medical care.
In the case of developmental disabilities, they're essentially passing the buck (and the tax burden) to our grandchildren. Children who receive proper care and supports early on don't need as many later on. That isn't to say they won't need ANY support, just not as many.
Nice job Ari...as I said..."Yo
Are there people with disabilities even at the table in the health reform negotiations? Not that I am aware of. Most people I'm sure missed the article right here on HuffPo talking about how 91 people, some quads in wheelchairs were arrested at a protest outside the white house, after President Obama willfully negotiated the Community Choice Act out of the negotiations.
It sickens me and breaks my heart to see how many people these days are living in a "it cant happen to me" world, and assume that people with health care are going to remain generally healthy and live into their 90's or 100's, and only have the smallest of ailments to worry about, a broken arm, stubbed toe, jock itch, etc.
But, lets face it people, there ARE people who ARE born with disabilities, and we have just as much a right to high quality affordable health CARE as anyone else. and, notice, I said HIGH QUALITY first, over affordability. The higher the quality the care is, the less need there may be for some of us to seek more care, which will lower costs even more than just the paperwork and profit margin obsessed folks want you to believe.
We must stop the vicious cycle of snowballing one medication on another on another, which inevitably leads to organ failure, which leads to premature avoidable death.
We are, but not as much as we need to be, PlaceboStudman. We at ASAN have been participating in some coalitions with other groups, and organized with Special Olympics a joint letter from over a hundred disability groups from across the country on the issue of health disparities specifically. I think the Senate Finance Committee heard that to some extent. On the other hand, that effort was sparked because some of the other coalitions out there (I won't say who, not in this context) decided that disability wasn't important enough to include as compared to race, gender and income disparities. To them, disability is something that is caused by health care disparities not a cause for disparities themselves. We know differently and this is yet another example of how even in progressive circles our civil rights are still viewed as charity by far too many people.
I and a few other folks in the disability community spoke on a panel about this yesterday at an AAPD/Cornell University event in DC on disability, health care reform and employment. It was streamed live via the web, but I don't know if there will be a recording posted at any point. I'll post another response to you if they do. It was a good discussion and some of the issues around my fourth point - the concerns over rationing - were unpacked in an interesting way during the Q&A, as we discussed the comparative effectiveness research funding that's being allocated.
We're keeping people informed about how they can help out through our listservs and our change.org site. I've included the links below if you're interested. This is a crucial issue for us - health care reform is expected to go through this summer, and opportunities for radical changes in health care only occur once every two decades or so, if history is any guide. The time for action on our community's needs has to be now. ADAPT (the group whose activists were arrested at the White House advocating for the Community Choice Act) understands that, and so do we.
http://www
http://www
Thanks for the reply, and keep fighting the good fight for those of us who wish we could be, but can not be there by your side supporting our cause. Information is the best defense against the disinformation that people hold toward us, and we must not let anything but our own death stand in the way of our fighting for our lives.
You know as well as I do, and better than most people this isn't just about civil rights. This is about our very lives!
So Kudos to you, Mr Ne'eman!
We CAN hold on to our American values AND save our nation financially. This is our year! Yay, Ari!
-Eleanor
You must be logged in to comment. Log in or connect with
