Tuesday, June 24, 2014

Olmstead, with Charts!

Information Bulletin #390
Steve Gold - June 20, 2014

This past Sunday was the 15th Anniversary of the U.S. Supreme Court decision in Olmstead vs. LC and EW ... or just Olmstead for short. It is an imperfect analogy, but not too far off to say that Olmstead is to people with disabilities what Brown vs. Board of Education is to racial segregation.

In its Olmstead decision, the Supreme Court applied the Americans with Disabilities Ac, an act of Congress in 1990, in a novel way. It found that "long term care" is a service, like any other, and that state governments that fund long term care must be sure to offer the service in the "most integrated settings", i.e., in peoples' own homes, not just nursing homes and institutions. It also affirmed that a person's choice of where and how to receive long term care services should play a role at least equal to the opinions of doctors and social workers. Finally, the decision ... and the President's Executive Order in 1999 which endorsed strengthened it ... underscored that states and localities might have to change their long term care programs and practices, even to the point of complete overhaul, in order to comply. "The way it's always been done" would no longer be an acceptable limitation, and "We don't offer that kind of service here" could no longer be an excuse.

Let's put it another way. If you, or your disabled child, or your aging parents, need help with everyday self-care every day, or several times a week, and your county or state says the only way they can get that help to leave their home and go into a nursing home, assisted living, group home, or other institutionalized facility ... that is a violation of their civil right to choose getting care in the manner and place they choose. It doesn't say they can't go into the "old folks' home" if they want to, but they can't be forced to just because nobody can or wants to figure out another way for them.

Most people, given the choice, would rather live in their own homes than nursing homes. With this Olmstead concept asserted at the highest level of U.S. law, the expectation was that more people would get care in their own homes and fewer in institutions.

A good way to measure how Olmstead has changed long term care for disabled people is to look at how Medicaid spending on long term care overall is divided among institutional care and community care ... between "facilities" with numbers of "beds", and care provided to people in their own homes and apartments. Steve Gold, one of the foremost advocates and policy analysts on long term care, recently published national and state-by-state data on community vs. institutional Medicaid spending, comparing 2000 with the latest complete data for 2012. Here, in chart form, is some of what he found:


2000 Medicaid Average Spending on Long Term Care, United States, 81.3% Institutions, 18.7% Community - 2012 Medicaid Average Spending on Long Term Care, United States, 61.2% Institutions, 38.8% Community
We still spend a good deal more than half of Medicaid long term care dollars on institutional care than we do on providing care in peoples’ own homes, but there has been a 20.1% shift towards community-based care. That’s a pretty big shift that almost certainly is the result of policy changes and peoples’ choices, not changes in peoples’ physical needs. In other words, it’s a shift that has occurred because we wanted it to occur, and made it happen.


2012 Medicaid Spending on Long Term Care, North Dakota, 86.0% Institutions, 14.0% Community - 2012 Medicaid Spending on Long Term Care, Minnesota, 34.6% Institutions, 65.4% Community
There is a vast difference among the 50 states. It’s interesting to note that the two states at the opposite ends of the spectrum are the neighboring states of North Dakota and Minnesota. North Dakota is still much more invested in institutional care, while in Minnesota, institutional care is still substantial, but also a clear second to community services, a still a rarity when in most states, institutional care still outweighs community services. Finally, it’s encouraging to see that while some states have made only modest changes, and others have a long way to go, every state has improved it’s balance in favor of community care.

Again, these different numbers can’t be driven by differences in need … disabled and elderly people most likely have the same kinds of needs and preferences in both states. Such a huge difference in spending must be due to different policies, and policies can be changed.

What it means for people is that more of the people who need long term care … children, young disabled adults, and people with disabilities from age … now are able to get it in their own homes, and fewer wind up in nursing homes or other institutions against their wishes. That is progress, and it’s far more dramatic than any chart can fully demonstrate.

A Little Moxie Summer Blog Hop - "My Connection with Disability: An Introduction"

Summer Blog Hop Series: Challenge!
This is my first contribution to the "A Little Moxie" Summer Blog Hop.

My connection with disability is that I have disabilities. Actually, I have one underlying genetic condition called Arthrogryposis, which produces a variety of impairments.

That doesn't mean that I have always connected with my disabilities in the same way. Looking back, it seems like I have gone through four phases in my understanding of disability:

Aware and Ignore

I can’t remember a time when I didn’t know that I was physically different from most other kids, and it feels like I always associated this with words like “handicapped” and later “disabled”. When I had to have surgery, intensive physical therapy, new braces or orthopedic shoes, I would focus on my disabilities for a brief window of time. Mostly, I ignored them while adapting to them. That is, I never tried to act like I could do everything non-disabled kids did … I didn’t ignore my disabilities that way. But I didn’t think about my disabilities or excessively worry about them during times when nothing in particular was happening with them. Until my Senior year in college, for the most part, the topic of disability in general bored me.


I was a Senior in college in 1989, the year that students at Gallaudet University made national headlines with an extremely effective protest that resulted in the appointment of Gallaudet’s first Deaf President. Gallaudet is the nation’s premier university for the Deaf, nearly all of its students are Deaf, and their protest was the first time I became aware of people with disabilities focused on disability but in a militant and empowering way, not pleading or pitying. This was the era when Jerry Lewis was still broadcasting a popular and admired telethon fueled on tears, sad photos of bereft children, and the catchy by in retrospect creepy concept that kids and adults with Muscular Dystrophy were “Jerry’s Kids”. This was disability activism in my eyes, until I saw the Gallaudet uprising. It’s important to note that it was not at all the first mass protest by disabled people in history, just the first one I knew anything about. My attitude towards my own disability started to change then. I began to realize that there might be a connection between a part of myself I sort of despised … my disabilities, and something I had come to love, political thinking and activism. I still didn’t do anything about it right away, but for the first time I could envision another way to think about disability that was both personal and political.


A few years later, after writing a Master’s thesis on depictions of disability on television, I learned that a Center for Independent Living had opened in my home town. I didn’t know what a CIL was, but I soon found out, and got a job there after doing a summer internship. Over the next 23 years I went from a staff position to being Executive Director. No matter what position I held, however, the important thing is that I got to know literally thousands of people with all kinds of physical and mental disabilities, from every conceivable background, with a variety of strengths and human frailties, and facing social, physical, and sometimes most significantly … financial barriers to independence and fulfillment. This experience broadened my horizons, and gave shape to my understanding of things like ableism and discrimination, body shame and acceptance, trauma and empowerment, and how disability crosses with race, gender, education, and economic status. I also developed strong convictions about long term care, education of disabled kids, and the importance of policy in affecting the lives of people with disabilities. And, I got very tired, and very burned out. Worst of all, from my point of view, I started to feel cynical about the people we were trying to “help”. It seemed like “we” in the Independent Living Movement were more interested in independence and empowerment than the people with disabilities we met in our communities. For that and other reasons, I stepped down from my position, and started “disability blogging”. Physically, I needed to rest. Mentally, I needed to refocus and recharge … or else cut my connections for good and do something else entirely.

Listening and Learning

Blogging turns out to have been the perfect choice. I went in thinking that there were few good disability-related websites and blogs, and instead found not one, but several vibrant disability blogging communities that restored my faith in the disability community, and my humility about having all the answers. I found parents of kids with disabilities, whose blogs provoked me, challenged me, and gave me new insight into my childhood and family. I found younger people with disabilities … teens and young adults … who seemed to perceive no great contradiction between complaining when disabilities got hard, calling out ableism in everyday life and culture, and being awesome in their disabled bodies and minds. There are lots of 25 year olds who are more comfortable with their disabilities than disabled people twice and three times their age. I also found that my ideas of disability weren’t necessarily state-of-the-art anymore. Some aspects of newer thinking about disability I have a hard time with, but for the most part, new formulations and ideas have energized me, and given me a renewed respect for disabled people of all sorts who do what they must to survive and thrive.

Finally, this journey has brought me to the point where I feel both more comfortable with my own disabilities, and more unsettled and curious … in a good way.