To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

[Cross-posted with permission]

When taking The Black Balloon with that premise in mind, it’s a movie I found to be both honest and challenging.  The movie takes risks, which I like from an artistic standpoint.  It has a solid, not-too-subtle message of acceptance at its core, which I like from an advocacy standpoint.

If taken outside that premise the movie can be problematic.  This movie is biased.  Charlie, the brother with autism, is not the viewpoint character.  Nor is he the main character.  While he is not dehumanized, The Black Balloon does not tell Charlie’s story.  For some viewers that’s going to be frustrating.

At face value, Charlie seems to be “the problem” that the plot intends to solve.  Thomas, the non-autistic brother (also the viewpoint character and the main character), starts off the story seeing Charlie as the problem that needs to be solved.  This can be hard to watch.  There is violence between these brothers, which can be hard to watch.  There is violence between the parents and the children, which can be hard to watch.  Charlie’s autistic traits are emphasized to the point of stereotyping, which can be hard to watch.

But—and this is a very important but—that bias is not the movie-maker’s bias; it’s Thomas’ bias.  This movie is about transforming Thomas’ perceptions of his brother.  It’s about Thomas’ journey as he grows towards acceptance, reaches for understanding, and builds an appreciation for the person Charlie is.

If I had to classify The Black Balloon, I would not call it an “autism movie” or an “advocacy movie” or even a “prejudice movie,” though there are elements of all of that within this movie.  The Black Balloon is a coming-of-age movie, in which Thomas must come to terms with his brother as he is as part of growing up.  So, while there is stereotyping in the movie, it is because for most of the movie the viewpoint character sees his brother as his autism, not because that is how the movie-maker’s envisioned Charlie.

Another thing that makes this movie problematic is my concern that viewers who have no direct experience with autism might mistake this portrayal of one autistic character as a portrayal of autism as a whole.  Obviously no movie can do that, but that doesn’t stop people from internalizing a movie and using that movie as their basis for understanding. 

Yet, despite the hard-to-watch parts and the risks of further stereotyping, the movie resonates with me.  I have a great appreciation for the parents’ struggle to provide opportunities for both their children.  I have a great appreciation for the mistakes the parents make.  I have an appreciation for Thomas’ struggle to come to terms with his own life and all the people within it.  And I have a great appreciation for the subtle way the movie-makers showed Charlie as an outsider looking in, even within his own family.  I liked how they showed that there was a person behind the stereotype—a person who wanted very much to be included in his brother’s life and for his brother to take part in his life.

Overall, I would consider the movie to be very well-done.  It’s a story with a point, but the focus was on telling the story, not on telling the point—which is very much appropriate.

“If you know of a good autism-related blog, please comment with its url! Let's see how big a directory we can create! If you don't mind, please link to this directory, too!

If I miscategorize your blog, let me know where you want it! :-)”

In related news, I checked and the following blogs are not as dead as they once appeared:

• Autistic Input
• First Signpost Late in Life
• Interverbal: Reviews of Autism Statements and Research
• Moms of Special Needs Children
• My Thoughts On…
• Normal is Overrated
• Preservation.org
• The Point of View of an Aspergian
• The Rettdevil’s Rants
• Venus Speaks

Click on through and happy reading!

*Disclaimer* I do not monitor the behavior of my fellow bloggers.  I link to other blogs and Websites to provide information.  I do not necessarily support the content of these blogs, but I do support open communication.  If you feel I should be aware of unacceptable behavior, please e-mail me and I will provide a warning to other bloggers.  *End Disclaimer*

Happy reading!

And if there are any more not-so-dead blogs out there, please let me know!

• First, note that this network is not exclusively for women or for those who are autistic.

 “AWN is dedicated to building a community of autistic females, their families, friends, and supporters who have a place where they can share their experiences amongst a diverse, inclusive, and supportive environment.”

• Organized much like an e-zine, there are also articles of interest to AWN’s target audience.  Here is an excerpt from Amy Caraballo’s piece on Zakhquery Price:

“During a typical school day in October, Zak had a behavioral tantrum in class. It has been reported that while in mid-tantrum, he was cornered and “taken down” by school staff in an unspecified restraint technique. He fought back and allegedly caused insignificant injuries to the staff involved.”

• AWN also offers a calendar of events, which lets us know about expected radio guests and other relevant events.
• AWN provides a forums section, which includes forum areas like “Strategies for Daily Living,” “Advocacy,” and “Networking.”
• There is a directory of prominent participants of the Autism Women’s Network and contact information.

Now, I would like to draw your attention to latest issue of Autism-Asperger’s Digest Magazine.  Not only are there some great articles in this issue, one is of personal interest to me!  A few that caught my eye right away follow:

• “Nothing to Hide: The Danger of One Wrong Provider” by me

“Like many of you, I’ve read articles and heard lectures on the importance of carefully choosing providers and selecting services for our children with autism.  I’ve walked away from doctors, and even a school because of what I’d learned.  I took charge of my children’s care and actively led every team involved.  Then, I learned how much damage one wrong provider could do.”

• “Neurodiversity: A balanced Opinion” by Nick Dubin, Psy.D

“And that’s where the battle lines seem to be drawn: ‘High functioning’ autistics versus the parents of ‘low functioning’ autistics and various adults on the spectrum who also advocate for a cure.  What’s the solution?  Is there a solution?”

• “Asperger’s Adults and the Court System” by Laura Larissa Scott

“My second court system interaction was much less pleasant, made more so, I believe, by the fact that I am an adult with Asperger’s Syndrome (AS).”

Please check this issue out if you can!

Autism: The Musical was released in April, 2007, and seemed like “old news” when I watched it.  Now, over two years later, it’s still having a newsworthy impact.

“I cannot make people value my daughter,” one mother said, while speaking of her child during an emotional showing of “Autism: The Musical” on Sunday.

That one quote quickly became a talking centerpiece at the event.

Honestly, I don’t remember the entirety of my reaction to this movie.  I do know there were some parts I considered seriously controversial.  I also know that Autism Speaks posted this description:  “As it follows their journey, the audience not only better understands the nature of what autism is, but celebrates the joyful spirit of each child.”  Not without irony.  I also remember that it provided an excellent platform for my brother to experience the diversity that is autism beyond what my three unique little boys can provide.

What I also know is that Autism: The Musical supports getting involved in Autism Speaks, Cure Autism Now, and the (seemingly out-of-place) Miracle Project.

If it serves as a vehicle for communicating the value of autistic persons, that’s pretty good news.  However, I can’t help but think valuing autistic persons and curing people of autism are conflicting paradigms.

Elesia of Aspitude! is a woman with Asperger’s who is also a Research Assistant for Academic Autistic Spectrum Partnership In Research and Education (AASPIRE).  She recently wrote a post called The Fingerprint of Autism that reminds people that each person on the autistic spectrum is a unique individual.  As obvious as that seems to me, it really is worth saying, because there are people who just don’t get it.

Besides, there’s a really cool picture of a blue butterfly!  What can I say, I appreciate pretty things. :-)

As the first professional periodical to accept my non-fiction work for publication, I would like to highlight Autism Asperger’s Digest and tell you a little more about it.  AADigest won the Gold Award three years in a row from the National Parenting Publications Award competition.  “This is NAPPA’s highest honor, and the prestigious award recognizes the AADigest as one of the most useful products geared to expectant, new or veteran parents today,” says the AA Digest.

“Autism Asperger’s Digest has the unique distinction of being the only NAPPA winner to receive a NAPPA Gold Award three times in a row. We salute the editors and writers who provide such reliable, reputable and positive information for families with children and adults on the spectrum,” said NAPPA spokesperson Barbara Smith Decker.

After finding AADigest (far too late for comfort) I immediately became a subscriber.  Being accepted for publication, I got an additional year’s worth of subscriptions as payment.  For those considering trying to place an article here, I should warn you that there’s no financial compensation, but you’ll be published, you’ll get several copies of the issue in which your work appears, and you’ll get a subscription.  For a magazine like this, that’s a great deal – especially if you’re like me and are both trying to reach this particular audience while also being part of this audience.  Of course, parents aren’t the only ones who read AADigest.  They also publish information that is useful to service providers and family and friends of those on the spectrum.

One feature that I believe adds special credibility to AADigest is the column written by Dr. Temple Grandin, Autism & Asperger’s: The Way I See It.  Thus far I’ve been very satisfied with the magazine.  I don’t agree with everything I read there – I’d be disappointed if I did, because that would show a particular bias that is uncharacteristic of good journalism – but they take a very balanced approach between respecting the differences and blessings of autistic people and aiding people who trying to educate and assist autistic people.

I recommend you take a look at AADigest if you haven’t already.  You can browse past issues (some articles are available online), check out the contents of the current issue, or subscribe for a reduced price now!

Another ailment which is distinctly Alex’s (of my three boys) is something I don’t have a good name for.  Basically, when his adult teeth grow in his baby teeth have this nasty habit of not coming loose and falling out.  The adult tooth and the baby tooth compete for space where only one tooth should be.  It creates a double row of teeth in one spot that pushes both teeth out of ailment and affects the surrounding teeth.  He also has a very, very sensitive mouth.  When we first started brushing his teeth, he would occasionally gag to the point of throwing up.  Since then he’s learned to control his reactions.  When he cannot tolerate having his teeth brushed he just clamps down his teeth and lips so the toothbrush can’t get in.  If we catch him at just the right frame of mind and level of sensory management, we can occasionally get a tooth brush in his mouth and clean his teeth.  But, it’s not enough and he already shows signs of cavities.

Due to these complications, taking Alex to the dentist seems very inhumane.  To make the experience less traumatic, we go up to the dental clinic in the Children’s Hospital in Milwaukee.  They have a well-trained staff and special equipment housed in a seemingly ideal setting.  We take Alex into a private room with subdued lighting (except for the dentist’s lamp).  They have a hug blanket, which is a form of restraint intended to help keep him still and apply pressure that helps keep him calm.  But then we have to get the wedge in his mouth so the dentist can poke around in there.  The hug blanket isn’t enough, so on comes the happy gas (which isn’t available at the local dentist’s office).

Last time we took too long turning on the happy gas and Alex experienced such a severe reaction to the cleaning process that he threw up.  After that, a lot of happy gas was used.  Alex fell asleep or a state of near sleep, which allowed the dentist to x-ray his teeth (revealing the near cavities) and finish some of the cleaning.  Even in this state, Alex was uncooperative.  Furthermore, I was concerned that he’d had too much of the gas.  He lolled a great deal and lay down in the car on the way home.  It’s an hour and a half to two hour drive back to our house.  I was alone with Alex and as much as I would have liked to watch him, I had to keep my eyes on the road.  I felt anxious for his well-being all the way home, and would reach my arm behind me to touch him and feel the rise and fall of his shallow breaths.  He was out of it and upset for the rest of the day.

After seeing how traumatic the experience was for Alex, the dentist recommended putting him under general anesthesia in order to perform all his dental care needs at once.  This is a procedure the dental clinic is able to do, but getting MA approval is difficult.  Before we can get that approval we have another regular visit to see if just maybe it’ll go more smoothly this time.  It’s a week away and I’m not looking forward to it.  Luckily this time I will be picking my mother up at the airport on the way back, so I’ll have another set of eyes to watch Alex.

The question I ask myself is:  What would be the most humane way to get Alex the dental care he needs?  I don’t like restraints, I don’t like doping him up with “happy gas” (which, btw, doesn’t make him at all happy), and I don’t like the idea of putting him under.  Yet, without the restraints and the happy gas, dental care would be even more traumatic for Alex.  And putting him under may be the least traumatic alternative.  If teeth problems didn’t cause so much pain (as I know from my own mouth and through observing others), then I would probably say we should just forget the whole thing.  But cavities are painful.  Untreated cavities can lead to cysts, which are even more painful.  And, while I cannot be sure, I cannot imagine that having two teeth where there should only be one would be all that comfortable.  I especially cannot imagine that, since his aggressive behavior started right around the time the first baby tooth refused to come out.  It might be coincidence, but he might be in constant pain or maybe just discomfort.  That would certainly explain his irritability.  But so would the general frustration of being unable to consistently communicate in a manner that is understood by others.

The most difficult thing for me is the ignorance.  I don’t know the best thing to do for my child.  If I knew, but was unable to do it, I could at least plan and strategize how to achieve my goals.  But, not knowing leaves so few options.  At this point, I can only make the best choice possible – using both my head and my heart to see which way to go – and hope Alex can forgive me if I’m wrong.  As a parent, there is just so much of that.  We second-guess ourselves, because some of the choices we make are just wrong.  But we never have all the information; we never know all the consequences; and we cannot see inside our children’s minds or ask their future selves to know what they would choose if they were able.  We must do the best we can and remember to say “I’m sorry” when we’re wrong.

P.S. Left Brain/Right Brain also has a post about autism and dentistry that leads you to an article by Darlene Oakley.