Weekend with Irene

Everyone is talking about the “hype” of the hurricane coverage in the media and by the politicians.   I suppose if you did not actually experience a major storm, then you would feel somehow robbed; robbed of your end-of-summer weekend, robbed of your piece of mind, robbed of your ultimate hurricane life experience.

I am glad that we were warned of the potential for disaster even if that disaster did not actually befall our family and place.  When you constantly worry about another person (who is incapable of worrying for herself) then, it helps alleviate anxiety to be over-prepared.

In order to alleviate my own anxiety, I brought my daughter Lily home to Maine with me and we spent the entire weekend eating and sleeping and not worrying.  The actual storm, although less than initially predicted for us at the coast, was, nevertheless, quite spectacular to watch from the windows as the wind built and changed direction and the waves grew and the rain came in waves and sheets.  We have a generator so when the power went out for an hour or so we just kept on watching the animated video and talking on Skype to Lily’s Dad.

However, I do not think I was prepared for the kind of devastation people are facing in Vermont right now.  They probably did not think it could happen to them, either.  I know of friends who are completely isolated because of road wash-outs.

Are we really in for worsening weather patterns now because of climate change?  Or is this really just our time in the cycle for bad weather?

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?

 

Access to Medical Care for Adults with Intellectual Disabilities

Recent news stories point to the decreased access to medical care because of less availability of primary care practitioners, especially those willing to take on Medicaid and Medicare because of reduced reimbursement rates.

This from an article in the New York Times today: http://www.nytimes.com/2011/06/27/health/policy/27docs.html

“In a recent study, the Massachusetts Medical Society found that 53 percent of family physicians and 51 percent of internal medicine physicians were not accepting new patients. When new patients could get appointments, they faced long waits, averaging 36 days to see family doctors and 48 days for internists.”

“Most doctors accept Medicare patients, who are 65 and older or disabled. But many say they do not regard the government as a reliable business partner because it has repeatedly threatened to cut their Medicare fees. In many states, Medicaid, the program for low-income people, pays so little that many doctors refuse to accept Medicaid patients. This could become a more serious problem in 2014, when the new health law will greatly expand eligibility for Medicaid.”

Some people might not be aware that most severely intellectually disabled people, such as those with severe autism, usually are dependent on Medicaid for their health care as well as for many other services (such as residential).  Many are also “dual eligible”, using both Medicare and Medicaid.

It is almost impossible right now to find adult primary care for those adults transitioning from their pediatricians to adult health care services.  Many stay with their pediatricians or utilize the Emergency Department for any health care needs that they might have.  Routine health maintenance is not done and there is no primary prevention.

When I asked a hospital group about ordering and performing mammograms on women with intellectual and developmental disabilities they were stunned because they really had not considered this problem.  Once it was pointed out, however, they were very interested in exploring solutions.  And this was a group specifically set up to examine and address access problems for the disabled.

Our adults with severe disabilities due to autism are facing discrimination above and beyond what the merely physically disabled face.  And the tsunami has not yet arrived.