Disability, Obesity and Community Living Reforms – Some Food for Thought:

Disability, Obesity and Community Living Reforms – Some Food for Thought:
Increases in obesity and weight related health conditions, long-term illness, disability, institutionalization rates pose vital questions, civil rights issues and dilemmas as well as opportunities that the disability community needs to help grapple with, frame and address. This piece is meant to begin that conversation. Here are several findings from a recent research brief by Rand -- ”Disability & Obesity -- The Shape of Things to Come” – that should be a wake up call to those interested in creating equal access to community living services as well as possible ways to finance it:

. Obesity in the U.S. population has been increasing steadily over the past two decades – nearly one in five Americans (127 million adults) is overweight and 60 million are obese.
. The rate of severe (aka, morbid) obesity – generally defined as exceeding one’s ideal body weight by 100% or more – also rose perspicuously by 50% from 2000-2005.
. This means that today nearly one out of every twenty or about 9 million adults are severely obese in this country.

Obesity, particularly at its most significant forms, exacts mounting human and economic costs leading to increases in poor health outcomes, early death, higher disability rates among working age and older Americans and yes, increases in nursing home occupancy rates. Disability rates among elderly persons both here and in other developed countries have been generally on the decline over the past few decades. Researchers hypothesize this trend will reduce the need for long term services and supports but hedge their bets on just how much of an effect there might be. In contrast, there is much less gray area in Rand’s findings re: obesity related increases in disability and institutionalization rates among working age adults. According to Rand:

. Disability is trending upward among the post baby boomers and rising most steeply among those in their 30’s. Disability rates among this younger group have increased by 50% -- much of it linked to the growing girth of Gen-McD, cutting across all economic and social strata.
. Indeed, while mental illness is still the major cause of disability among working age Americans, the fastest growing causes are diabetes and musculoskeletal conditions that are often secondary conditions of obesity.

Persons who have existing disabilities also are more likely to be obese than those without a disability. This is particularly true for women and blacks who are disabled.

The Rand researchers further found that:

"Weight … has a dramatic effect on people’s ability to manage five basic activities of daily living: bathing, eating, dressing, walking across a room, and getting in or out of bed. For men, severe obesity is associated with a 300 percent increased probability of having limitations on these activities. The effects are even larger for women."

If these current trends continue, they further posit that “the nursing home population would likely grow 10-25 percent more than historical disability trends predict” and that LTSS costs borne by Medicaid as well as individuals, families and society would skyrocket. Of course, reversing or significantly slowing obesity and the secondary conditions and poor health outcomes it results would likely produce savings of the same magnitude.

But, can we prevent or at least ameliorate the effects of obesity without punishing and making pariahs out of those who are obese? That is a vexing open question.

Disability prevention has a troubling history and effect. Such effects have at times been extremely maudlin, reinforcing the worse in societal stereotype and most crushing of self-images (ala, the Jerry Lewis pity-athons). At other times, attempts in preventing and/or controlling a disability or an entire group of people with disabilities have had downright malevolent effects even to this day (ala, the pseudo-scientific attempts at eugenics, electro-shock and forced medication). Too often, the most blatant of discrimination and injustices have occurred thinly disguised as public health measures.

It is unfortunately easy to see how something similar could happen and is already happening with regard to obesity. Public ridicule and what is termed weight bias/discrimination targeting overweight and obese children and adults is rising. In a mid-1990’s, 7% of adult Americans said they were discriminated against due to their weight. By 2006, the proportion reporting weight discrimination nearly doubled to 12% of all adults. According to Yale’s Rudd Center for Food Policy and Obesity, weight bias can seriously undermine working age adults’:

n health and psychological well being;
n educational opportunity and achievement; and,
n hiring, promotion and earnings potential.

In children and youth who overweight or obese, it adverse consequences are equally if not more insidious and tragic. According to the National Education Association, for “fat students” going to school equals:

“ongoing prejudice, unnoticed discrimination, and almost constant harassment.… From nursery school through college, fat students experience ostracism, discouragement, and sometimes violence.”

This, of course, sounds sickeningly familiar to many of us who experienced the same bullying, harassment and worse in school due to our disabilities.

The most recent “in the news” example of how government can fuel and sanction such bias and scapegoating of persons based on their weight is debate over the so-called “fat tax. Many tax experts argue that such a tax would be both highly regressive and unlikely to produce much in the way of federal or state revenues. They might drive down consumption among some just as the high tax on cigarettes is thought to be contributing to driving down demand there. But at what costs in social ostracism? Why not bring the Ugly Laws back while we are at it.

Clearly, great care must be taken in designing and implementing public health strategies to prevent and ameliorate the obesity epidemic in ways that also aggressively combat the bigotry that accompanies it. Efforts in AIDS/HIV education and prevention offer important clues and lessons learned about how best this can be done without running roughshod over the humanity and fundamental rights of others.

Make no mistake about it, though, the debate over obesity has been joined and the disability community would do well to be an active and thoughtful part of it. My take is simply this: Like any other disabling condition, to the extent that obesity and/or its effects can be prevented, ameliorated and/or effectively managed, it would produce a series of vital win-wins. In this case, an ounce of prevention and effective management of obesity could well be worth hundreds of billions in savings. A small fraction of which would probably be more than sufficient to invest in and finance most reforms needed to reverse the institutional and isolation biases in both Medicare and Medicaid by equalizing access to community living services and supports. Proponents of a just and effective LTSS policy in the U.S. would be wise to join with the public health community, civil rights advocates and others in arguing that this can and must be done in a way that maximize the health, independence, inclusion, rights and liberties of all Americans.

Governing, Social Networking Sites – Leading to Greater Accessibility and Free Speech ????

Accessibility and Web 2.0 is currently one of the third viewed articles on Governing magazine’s website. The main point of this piece that it glosses over a lot is that governments at all levels are increasingly using social networking sites in two ways: 1. To make a virtual town hall meeting 24/7 where the public can voice their opinion, lodge greivances, seek redress, presumably even practice or not practice a religion as one sees fit; and, 2. Deliver and/or facilitate goods, services and equal opportunity especially in respect to such things as education and employment. The article mentions that a government entity's failure to address web access issues when using these sites may violate the Rehab Act. Now I am no lawyer but to me it likewise violates something that if memory serves is called the 1st Amendment as well.

Improved Diabetes, Obesity and Disability Management Could Yield Savings

The study, “Using Clinical Information to Project Federal Health Care Spending”, which was published as a September 1 Web Exclusive in Health Affairs, yields important insights in at least two key areas. First, it presents a model for how the Congressional Budget Office and the Office of Management and Budget can forecast the short and long term costs and savings associated with initiatives to better manage and ameliorate the effects of major long term conditions such as diabetes. Current costs estimating methods look at cost and savings only over a relatively short 10-year time span, which often distorts what true spending and savings patterns might really look like over the longer haul. In reporting on the study, The Washington Post notes:

"Preventive services for the chronically ill may reduce health-care costs, but they are unlikely to generate the kind of fantastic savings that President Obama and other Democrats have said could help pay for an overhaul of the nation's health system, according to a study being published Tuesday." "Using data from long-standing clinical trials, researchers projected the cost of caring for people with Type-2 diabetes as they progress from diagnosis to various complications and death. Enrolling federally-insured patients in a simple but aggressive program to control the disease would cost the government $1,024 per person per year — money that largely would be recovered after 25 years through lower spending on dialysis, kidney transplants, amputations and other forms of treatment, the study found. However, except for the youngest diabetics, the additional services would add to overall health spending, not decrease it, the study shows." These findings offer health care reform advocates added ammunition regarding arguments "that the 10-year horizon typically used by CBO analysts is too brief to capture the savings that eventually result from improved public health." The authors suggest that the CBO use a 25-year budget window to calculate prevention program costs (Montgomery, 9/1).

The Post further reports that House Speaker Nancy Pelosi and Sen. Tom Harkin (D-Iowa), among others, have been highly critical of how under the current rules CBO cannot include potentially large long term savings that might occur outside the ten year window in any of its scoring of health and long term services reform legislation. Studies like this one offer two sets of important insights and opportunities:

First, such research clearly shows that if we as a nation are to have any real chance of “bending the curve” of health and LTSS spending, we must get better at identifying, managing and mitigating the effects of diabetes, obesity and other chronic conditions. Rand recently published a brief aptly entitled, “Disability & Obesity -- The Shape of Things to Come”, that is also a must read for anyone committed to bringing about true health and community living services and supports reform and finding savings to pay for it. One just has to go to nursing homes in DC a stone’s throw away from Congress and the White House to see that the shape of things to come is already here and the time to reshape things is now.
Second, while these studies come too late to have much of an effect on the current health reform debate, they can and likely will affect how CBO and OMB as well as the little known but extremely influential CMS actuaries score future initiatives. Disability activists and our policy-making allies would be well advised to recognize, however, that this brings with it both good news and bad news – for where there are potential long-term savings there are likely to be long-term costs to be identified and scored as well.

August 24th with the White House Health Reform Team

Several of us recently met with Nancy Ann DeParle, the President's chief strategist on health reform, to discuss ways to include key components of the the CCA in the final legislation. It was extremely good to sit down first with President Obama in July and then his health reform team in August and know that they are genuinely interested in working with people with disabilities and our families. As is self evident to all of us, we have the most to gain or lose in the next week as health reform takes shape or the insurance ... Read Moreindustry and their allies on the fringe are allowed to beat it to a pulp. Both on the health reform debate writ large and working to include the Community First Choice Medicaid Option in the final legislation, I am convinced we can and must make the vital difference."

See “Disability Leadership Meet With White House Staff on Health Reform”