Health Care Disparities: Not just for the Physically Disabled

Adults with intellectual and developmental disabilities suffer from health and health care disparities that are not addressed in most discussions of this topic.

Many studies document disparities in access and quality of health care and the resulting health problems for minority and disadvantaged  populations.  The ADA highlights issues for those with physical disabilities. However, there are few published studies documenting the increased morbidity and mortality of those whose disabilities are less vocally obvious, for those who cannot speak for themselves.  I am attempting to add my voice to speak for them as best I can by speaking with and educating physician and hospital groups.

The current issue of the magazine Health Affairs is devoted to Health and Health Care Disparities HERE.  The following abstract addresses the issue of disabilities in general.

  • Fifty-four million people in the United States currently live with disabilities, notes author Lisa I. Iezzoni of Massachusetts General Hospital, who says that eliminating health and health care disparities in this population should be a national priority. The number of people with disabilities is set to grow substantially in the next 30 years as the baby-boom generation ages and children and young adults face complications related to overweight and obesity.  People with disabilities confront disparities in their use of preventive and other health services, and health care professionals often get little training in how to care for people with disabilities.
Advertisements

No good deed goes unpunished

I have written before in this blog referencing the ongoing New York Times reporting of abuses in the New York State Office for People with Disabilities.  Now, in this article today, the issue is: Why is the state punishing the man who is reporting the abuse?

http://www.nytimes.com/2011/08/22/nyregion/cuomo-administration-continues-to-pursue-case-against-jeffrey-monsour.html

It is, of course, possible that we do not know the whole story.  It seems to me, however, to follow a pattern that is all too common in these whistle-blower cases nation-wide; the whistle-blowers lose everything and the evil-doers are never punished.

Let’s hope that in New York the good deeds of this direct care provider serve to force the system to improve and that he will  “go unpunished”.

Fire: Please be aware for your children with autism.

Recently I heard of a boy suffering from severe autism who had a fascination with fire and was burned on 60% of his body when he walked into a fire pit in his family’s backyard.

Some might question the competence of parents who allowed this to happen.  Those of us who are familiar with this issue know otherwise.

I am reminded of the two incidences that resulted in our banning of candles from our house forever.  The first time my daughter erupted in flame was at a friend’s birthday party.  We were toasting with champagne and I realized that LL was mesmerized by a candle on the mantle-piece. Before I could take the one step behind me to reach her, the flames were on her bangs and there were small blisters on her forehead.  Luckily we were able to put this out in a hurry and apply ice and she was not permanently disfigured.  She did not learn from this and the next year, on her birthday, she did a face plant into her birthday cake, candles and all.  Only the quick reaction of her uncle, sitting across the table from her, averted a catastrophe.  The singed bangs grew back in and she is as lovely as ever.

I think we should have a public warning go out to all parents and care-givers to be especially aware of the risks of fire and the potential for severe injury.  This may be as common as “wandering” and cause as many deaths and suffering families left behind.

I would be interested if  anyone who happens to read this knows of any children or adults with autism who have been injured by fire.

Health report card

The Affordable Care Act, or, for those tea partiers out there, Obamacare, has made some changes to how health care is funded and tracked. Many of these changes are apparently still in the administrative phase in terms of setting the regulations and rules that pertain to medicare, medicaid, provider reimbursement and the like.

The recent “Health Report Card” given to Massachusetts in a report by the Boston Foundation and NEHI can be seen HERE.  This report gives the state’s efforts at healthcare reform in primary care a “C” grade, stating that “the state’s health care reform and health care payment reform strategies have not as yet put the expansion of highly coordinated, team based care at the center of plans for improvement”.

Those who work in medicine for the developmentally disabled adults in Massachusetts see this as a turning point.  Perhaps we can be successful in building a new, coordinated system of care based on a team of providers that will result in more “wellness” and less emergency department visits.

The existing system is very entrenched and the new policies will have to contain incentives that no one will want to refuse to be successful.  Monetary incentives are not enough.  We need to make it easier to navigate the system for individuals, for agencies that provide direct care, and for the health care providers themselves. Better communication between all parties, better education and health literacy, and healthier environments must be included.

Massachusetts was given an “F” in the area of Public Health Funding.  Severe budget cuts on the state and federal level have the potential for weakening further efforts at prevention of chronic disease and the reduction of long-term health care costs.

If Massachusetts cannot lead in this area, what hope for the rest of the country?