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  • Posted on July 6, 2012 at 8:03 AM

Willy chose sooner, rather than later.  So, he went to bed right around his usual time.  Four hours later, I woke him up.  The three primary pre-EEG conditions were 1) four hours of sleep maximum, 2) no caffeine, and 3) clean hair.

The EEG wasn’t scheduled until 10 am the next day, so those eight hours of forced wakefulness were pretty rough.  Willy kept trying to go to sleep on me, but I couldn’t let him.  Willy told me he didn’t want an EEG after all, but that wasn’t a choice.  He said he wanted to heal his seizures all by himself and I told him “That would be wonderful, but we don’t know how.”  He said, “Well, I wish I had magic, then.”  I said, “You know, so do I.”  He folded his arms across his chest, harrumphed at me, and flounced away.

At this point he was more grumpy than anxious, which was something of an improvement.  At his doctor’s appointment, I’d used the pain chart to ask him how anxious he was.

He chose number 9.  He was scared that the doctor was going to send him to the emergency room and that he would die there.  I’m not sure where this came from, since his own emergency room visit went relatively well.  We reassured him, of course.  I did.  The nurse did.  The doctor did.  But Willy was unconvinced.  I drove him by the hospital the next day, showing him the big hospital and the (relatively) small emergency room wing, and showing that we’d be going to the big hospital for his EEG.  I found a YouTube video of an EEG and we watched it together.  We talked about seizures and EEGs.  All told, these efforts reduced his anxiety from a 9 to a 7.  Being sleepy and grumpy trumped anxiety and brought him down to a 5.

Seven and a half hours of grumpiness later, it was time to go.  We drove to the hospital, avoiding the entrance that shows the big red EMERGENCY ROOM sign.  When Willy got inside, he was in hypersocial mode, trying to introduce himself and chat up everyone in the waiting room.  I had to caution him against stepping in front of people who were in a rush to actually get some place, but otherwise I tried to let him do what he needed to do to make himself feel better.

The best part was when Willy introduced himself to two gentlemen who were talking in the lobby.  I knew who they were—rather, I knew what their function was—but Willy had no clue.  So, when the receptionist asked one of them to take us up to the next waiting room, Willy was shocked (imagine a cartoon-style performance, with bug eyes and dramatic gestures) and said, “I just met you!”  So, we explained that the gentleman was a volunteer who made sure people got where they needed to get when they needed medical care.  That eased Willy’s anxiety quite a bit.

Then, of course, there was the waiting in the waiting room, and that’s never good.  But finally, we got to the appropriate room, met the very nice and understanding sleep technician, and spent quite awhile getting Willy hooked up.  Getting him hooked up took longer than the actual EEG.  Even getting him unhooked took longer than the EEG, but the hooking up took longest of all.

She started with a wax pencil and a tape measure, making marks in the shape of plus signs to indicate where the electrodes should go.  Then she “erased” the center of each plus sign using an exfoliant, which she called a “scrubber” for Willy’s benefit.  Then, she gooped up the electrodes and stuck them on, placing a bit of cotton over them to hold them in place.  I didn’t count how many wires she used, but there were lots of them.  Finally, after all the electrodes were in place, we were ready to go.  She dimmed the lights.

There was a lot of closing and opening of the eyes, without strobes, then with strobe lights, then with progressively more “aggressive” strobe lights.  (I don’t react to strobe lights, but even I felt they were aggressive.)  Willy had a hard time complying.  At first, it wasn’t a problem, but towards the end of the strobe light session he wouldn’t keep his eyes open because “it’s messing with my brain.”  Willy was not at all comfortable with the idea of actively triggering a seizure, even with the technician and me right there with him.  Later, when it was time to try to sleep while hooked up to the EEG wires, Willy was especially uncooperative.  He feigned sleep, but he resisted actually letting himself sleep.  Even afterwards, he wouldn’t let himself sleep.  So, I can’t help but thing that, whether it’s conscious or not, Willy has some self-defense mechanisms against triggering seizures.

So, I’m not sure how productive the whole thing was.  I’m hoping they could see enough to tell if they had found what they were looking for even though they did not trigger a seizure, but the technician wasn’t allowed to indicate the relative success of the EEG.

However, a little birdie did confirm that the minor fugue episodes we’d been seeing were examples of seizure activity.  After the grand mal, I’d been working under that assumption—not that there’s anything I can do about it at this point—but the birdie confirmed it.  Like the technician, however, the birdie is not a neurologist, so it’s a birdie, because birdies can’t get in trouble for passing along information that’s above their pay grade, I mean medical qualifications.  Still, I trust the birdie.

Now that this part is over, Willy’s a lot less anxious, even though nothing has actually been resolved.  He’s still clinging to both Mark and I and he still needs a lot of emotional support, but his anxiety levels aren’t hovering around 9 anymore.  Now, it’s back to the waiting and the hoping that there will be answers that give us the power to do something.

ASAN Update: Joint Letter

  • Posted on June 13, 2010 at 12:44 AM

Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations


Kathleen Sebelius
Health and Human Services

Mary Wakefield
Health Resources and Services Administration

Pam Hyde, JD
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.)


Access Living
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
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

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
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:
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]


  • Posted on May 15, 2010 at 10:00 PM

Executive Summary:  Alex dislikes dental work.  I believe in empowering patients to make choices regarding their own dental care.  Yet, I do not allow Alex to refuse dental care.  The difference is that care is being sought for my child’s benefit, and not my convenience.

The waiting room was okay.  Alex bounded from spot to spot, reading as many words as he could find.  Then, the dental assistant came.  We talked for a few moments.  When it was time to go into the back I called Alex to me, but he didn’t come.  I took him by the hand.  He walked with me and stopped a few paces in front of the door.  I tugged gently on his hand, an act that was more communication then force.  He looked at me, and took just enough steps forward so he was inside the door.  The door closed behind him.  Step by step, we moved forward—him resisting, me encouraging.

I said, “I will carry you if I have to.”

Alex chose to walk.

The dentist’s office is a difficult place for Alex to be.  He generally resists anything that involves others touching his mouth.  He resists brushing his teeth, flossing, and all forms of dental care.  He resists us looking at his teeth or checking for wiggly, loose ones.  He resists the removal of wiggly, loose teeth or the removal of any miscellaneous particles he decides to chew on.

I expect resistance, which is why I travel two hours to take him to this clinic.  The staff is prepared for his resistance and the facility is equipped to make dental care as safe and as comfortable as possible.

This particular appointment was a “quickie.”  The task was to fill a chip on his front tooth.  Easy access.  No drilling.  No paste.  If Alex had cooperated the whole thing would have taken 5 to 10 minutes.

Of course, Alex did not cooperate.  Or, to be more accurate, Alex cooperated as much as he was able to do with his current level of oversensitivity and anxiety.  He squirmed most of the time.  He cried quite a bit of the time.  He got out some good words, through a pry-thing that forced his teeth apart, saying, “I don’t want.  Don’t want.  I don’t want.”

We acknowledge his words.  We told him we understood.  We explained as best we could that we had to fix his tooth so the big-boy tooth didn’t rot and break the way his baby tooth had done.  He understood.  He took a few ragged breaths and was relatively calm (but still squirming) for a few precious moments, which gave the dentist the opportunity she needed.

The dentist was quick as she could be.  She talked to Alex with respect while she worked within his limited range of cooperation.  She chided him when necessary and complimented him whenever possible.  In the beginning of the session, she joined in as I sang Alex’s special song to him to help him control his anxiety.

Alexander, Alexander.  I love you.  Yes I do.

Really special boy-oy.  Really special boy-oy.

I love you.  Yes I do-o-o-o-o.

Despite not liking the work she does, Alex likes his dentist quite a lot.  He made excellent eye contact with her, which is rare.  When it was all done, he even smiled for her.  But for all that he likes he, that doesn’t mean he’s able to cooperate while he’s in that chair.

The experience is hard on all of us.  He doesn’t want to do this.  I empathize, because I find the dental experience to be a miserable one myself.  I also don’t want Alex’s teeth to deteriorate the way mine have after a childhood (and much of my adulthood) of not receiving proper dental care.  I know, in the long-run, the misery of receiving dental care today is much, much better than the misery of decayed teeth with its tooth aches, drilling, pulling, and fake teeth.

One might think that all of this is beyond his understanding, but Alex gets it.  As much as he dislikes this he does get that we’re not trying to hurt him or ignore his wishes.  He gets that this needs to be done, and he gets that we try to make it as good for him as we can.  There was a precious moment after the filling was put on and set when Alex was calm.  He stopped squirming and crying.  He took a few ragged breaths.  He looked at the dentist’s face and he waited.  It was like he was saying, “Okay, what happens now.  I’m ready.”

The only thing that was left at the point was the x-ray.  Last time it took an extra person and four tries.  This time it only took two tries and no extra assistance.

We’re making progress.  Alex did really well.  The dentist and I praised Alex profusely.  Alex left with a smile, but he also left as quickly as he could.

Still, I look back and think about that precious moment of stillness.  As a mom, one of my biggest challenges is doing things to my kids that I know they don’t want, but need anyway.  Things like dental care, shots, and surgery.  These unwanted needs make me wonder how deeply my respect for my children really goes.  I strongly advocate the patient’s right to choose the type of care received or to forego care entirely.  I advocate these rights for patients who society deems incompetent to make these decisions.  Yet I make decisions like this for my children.

There are times I feel like a hypocrite.

Then, I think about that moment of stillness.  I think about the smile Alex gave to the doctor.  I think about the way he cuddled close to me after all of it was over, and how he relaxed after I told him he did a good job and that I was proud of him.

I think about how there are times, even as an adult, when I don’t want, but still need medical care.  I think about how anxiety-laden my own dental appointments are.  I think about how much it hurt to regain the mobility of my wrist.  I think about how, after the surgery on my wrist, I kept apologizing for needing a heftier dose of pain medication.  When I got home I apologized for needing my husband and my mother’s help.

And I let go of the guilt and the doubt.  I’m not a hypocrite.  As a parent, I have to make some tough decisions.  I have to decide what medical care has sufficient value to force that care on my children.  Sometimes this means dosing the child with antibiotics.  Other times it means restraining my child so a dentist can fix his teeth.  Sometimes it means talking the child through the anxiety of getting blood drawn or getting a shot.  But at no time do I do these things for me.  At no time do I put my convenience over my child’s care.  At no time do I treat my child as if his will doesn’t matter.  I talk, I explain, and I comfort.  I give my children choices whenever I can.  I refrain from making choices based on my needs or my convenience, but base my decisions on the long-term best interests of my child.  And my children recognize the difference.  That difference is going to empower my children to make their own decisions in the future.