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.

Eating with Autism-2

There is controversy around the various ‘bio-medical’ treatments of autism and one of the most controversial areas is diet.  Many parents and physicians think that their children with autism are helped by restrictive diets of one form or another, the most common variant being the gluten-free/casein-free diet. Others include Feingold diet, the Specific Carbohydrate diet and the low-oxalate diet.

A recent study of the nutritional issues in autism can be found HERE.

When my daughter was  in her late teens she developed symptoms of anxiety: pacing, increased tantrums, aggression toward some of her teachers and upper GI symptoms of regurgitation and belching.  The neurologist recommended trying medication with risperidone.  I was not ready to make that leap at the time and the school did not approve of medications for behavior control anyway.

The school did not approve of  restrictive diets and supplements either.  Their method was to increase the student’s tolerance for a variety of foods by slowly encouraging new tastes, smells and textures.  Many children with autism are undernourished because of multiple food aversions and self-restriction.

After I attended a conference on the bio-medical treatment for autism put on by the group Defeat Autism Now! (DAN!),  I thought that it could not hurt to try some diet and supplement changes to see if it would help.  The school was willing to try the gluten-free/casein-free diet for 3 months and we also gave her some vitamins C and B as well as a balanced fish oil supplement.

The short story is that her behavior and happiness level improved immensely with this small change in what she ate.  Even her teachers admitted that she was able to control herself more easily and that she was able to concentrate longer in class. We added some digestive enzymes and things continued to improve.   When the neurologist mentioned trying a low-glycemic index diet for seizure control we instituted that as well.   Her last year at school was her best ever.   Her noise aversion disappeared and she was able to enjoy bowling for the first time.  She began learning to use a communication device and was more connected with people and more social.  Her gastrointestinal symptoms improved and she was more purposefully energetic.

The longer story is that when she transitioned into the adult world they refused to continue her diet  and despite many attempts to change things we have been completely unsuccessful in instituting even a reasonably healthy diet at her house.  We think we are making headway, we get nutritionists and dietitians involved, we get a commitment from the Agency to provide the diet (which is prescribed by a physician), then the staff at the house changes and all is lost to the wind.

Now, sadly, we have been forced to go the medication route anyway and are dealing with yet another set of side effects.  We are also changing seizure medication; tapering up and tapering down.  And we have yet another house manager to educate about food.

I am in constant awe of the parents who have been able to keep their children at home, who have control over what  their children eat and how they are treated.  It is extremely difficult to maintain these restrictive diets even at home and it takes maximum dedication and caring to do so.

So stop making fun of those over-protective moms who won’t let their kids eat the birthday cake; support them instead and be glad you do not have to do it at your house.

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?

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?

 

Dolphin swimming

I recently read a blog post about swimming with dolphins as a healing for autism and I was reminded of my early efforts to help Lily with her problems.

When Lily was 4 or 5  she had a 2 week spring vacation from school and I rented a condo in the Florida Keys. The condo came with a pool which we both thoroughly enjoyed. A friend came with me for the flight and the first week and my sister-in-law joined us.

I had read about this place near Marathon that had a “swim with the dolphins” program for children with disabilities so we drove down to check it out. The dolphins were in pens but the pens were connected to the open ocean so it seemed as though they could leave at any time. They could certainly jump over the net if they felt like it; however, there was a plentiful supply of fish at the dock and some little people who might have been interesting to the dolphins, (who knows what dolphins think…) so they stayed and played.

Lily was only interested in the playground dolphins made of cement that were located near the entrance under some trees in the shade.  When we took her out onto the dock, she squinted and cried; I think the bright tropical sun on the water was too much for her.

I watched as other children, one with “Down’s Syndrome” and one with a wheelchair,  swam with dolphins in one of the natural pens. The children really seemed to enjoy the contact and the dolphins did not seem to mind either.  My thoughts were that even if the children were not “cured” of their disabilities, they seemed to be having a rewarding experience and I wished that Lily could have participated on some level.

Later in the vacation, my husband joined us and we went to a small sea life park where you could touch the dolphins in a tank which was located in the shade.  Lily did touch them and some other things at the park drew her attention as well.

I experimented with many “cures” during Lily’s childhood, some actually helpful and some snake oil.  I always avoided those methods that carried serious risk. The desperation that parents feel when their babies have been stolen from them, the urge to do anything that might have some small effect to bring their children back, is hard to describe to the non-parent. It is similar to bribing your way into Hades and trying not to look back while you are leading your child back to the surface.  Your child has essentially died and been replaced by a shade.  You will do almost anything to bring her back to life.

I wish I could say that I am beyond all that anguish and that I am fully accepting of our situation. While it is true that I am fully accepting of Lily as she is and love her completely unconditionally, it is also true that I still want to tweak everything to make things easier and better for her.  I am always reading the scientific literature, waiting for the discovery, for the cure, for the magical cure.