Topic ILRU Independent Living Forums / Access to Medical Equipment - Where are We? / Welcome!

By mgordon On 01-05-07 05:44 PM

Welcome to the discussion forum on access to medical equipment and services. Your stories will be shared with NCIL and other organizations who are compiling this information. To post to this discussion, simply reply to this message. You do not need to register in order to participate; however, if you do not register you will be listed as 'guest' with no contact information available.  If you want a reply or to be contacted, please either register or make sure your name and contact information are in the body of your message. Thanks for your participation in this very valuable work.

By Guest On 01-08-07 09:10 PM

Posted by: June Isaacson Kailes, Associate Director Center for Disability Issues and the Health Professions Western University of Health Sciences, Pomona, California  310 821 7080, FAX 310 827 0269, TTY 909 469 5520 jik@pacbell.net || www.cdihp.org || www.jik.com just to get things going: ----Original Message----- From: Carmen Turner [mailto:carmen@ucla.edu] Sent: Wednesday, March 30, 2005 4:04 PM To: info@rerc-ami.org Subject: Basic Health Care for Persons with Disabilities I just saw your posting on the LILA website, too late for your March 21 meeting. My son Kim Mathenge is 24 and in a wheelchair due to cerebral palsy. He has not been weighed since he got too big for me to hold him. We have Health-Net insurance through my employer (UCLA) and go to Les Kelley Clinic in Santa Monica. It seems that it should be possible for such a sizable organization to provide a scale that can be used by people in wheelchairs, so they don't have to guess at the dosage for meds. I have mentioned this to their nurses or doctors several times and get no response." They keep asking him if he can stand on the scale. When he says no, they say "OK," and that's the end of that.

By heinsohn On 02-14-07 01:45 PM

1/8/07 Hi Elizabeth, I had a consumer who called and asked for a referral to a clinic for a mammogram. She used a wheelchair and was extremely uncomfortable getting out of the chair and on a table I tried to find a clinic that used the type of machine that allows you to either stand or sit this machine moves around you. Most of the clinics are aware of this new mammogram machine but they do not have them. They site costs as the reason. There should be at least one clinic in each borough dedicated to the special needs of people with disabilities that they could go to and keep their dignity, unfortunately my consumer had no chose and reluctantly participated in a breast exam and most likely does not look forward to the coming exam this year. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:47 PM

1-9-07 Hello Elizabeth, Recently, the medical supply company Jeffquip informed me that the lift on my power wheelchair, known as "the elevator lift" has been denied by Medicare.  I explained that the lift  is not a luxury item --- Everyday it helps me in and out of bed, retrieve items in  and out of cabinets, freezer and my closets.  Before the conversation ended I asked to please inform Medicare that without the elevator lift on my power wheelchair I would need a Personal Assistant just about around the clock. Most recently, a plumber had come to my home to discuss placement of a washer and dryer.  Because of limited space, we discussed a stackable washer and dryer.  It is only because of the elevator lift can it even be considered. If you would like further information, please do not hesitate to call on me. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:49 PM

1-9-07 I live in Central VT (Barre).  Starting in January 2006, I was referred to a sleep clinic operated by Dartmouth-Hitchcock for a sleep study (I don't know what you call that "equipment".  It took me until July 2006 to get the "study" started where I spent a night "sleeping" at the Central Vermont Hospital (which is a division of Dartmouth-Hitchock). It took about 3 weeks to get the "study results" back - and in summary it stated that I have "severe obstructive apnea".  The recommendation was for a bipap machine. It took another 2 weeks for the head of their sleep clinic to write the prescription for the Bi-Pap machine. When given to Keane Medical in Montpelier VT, Keane said something was wrong.  I have to wait another 3 weeks for the head of the sleep clinic to return "from vacation" despite the fact that the clinic's letterhead show three other MD's! When I finally received the Bi-Pap, thing were radically wrong and I repeatedly called the head of their sleep clinic about 3 dozen times in which case I was offered an appointment in FEBRUARY 2007.  On the last Friday in December, I reluctantly returned the Bi-Pap to Keane Medical! I later found out that if the State of VT (I'm on Medicaid) outright purchased the machine instead of renting it, it would have been paid for after a mere 13 months.  I believe that the rental of these type of medical equipment goes contrary to common sense as the States could own the equipment, especially since there is really no maintainence needed. I also believe that the access both in VT and elsewhere to these types of medical services places patients (myself included) to a servere risk of aggravating their original condition and may cause permanent injuries and/or even death. In my own case it is well known that obstructive apnea causes lowering of blood/oxygen which can damage the brain and utimately be fatal! I should also note that without the Bi-Pap machine, I cannot lawfully drive since one of the symptoms is that patients like myself can fall asleep without notice and to do so while I am driving is but one example along with operation of machinery, etc. that can cause a danger to myself and others. I also have tenderness on left side of my body and therefore cannot use seatbelts due to the pain from the pressure from the belts. VT recently removed all waivers of any type.  So I am forced to drive without seatbelts (when I do drive) and risk tickets, points on my driver's license from the violations if convicted, and most importantly higher insurance based simply upon the conviction(s) for operating without seat belts. Needless to say all of these acts/omissions violate state and federal laws but I can't seem to find a way to fight this stuff! This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By Guest On 04-14-07 02:23 PM

I also use a CPAP machine to prevent stroke or massive heart attack.  I developed severe sleep apnea at the age of 24 which was considered a "rare" case because I did not "fit the profile" (I was young, female, and 110 lbs.).  I am now 44 years old.  For twenty years, all utility companies have refused to provide "emergency or priority service" in the event of power outages for customers who use CPAP (even when physician letters are provided). They claim sleep apnea is not considered life-threatening by "their standards".  It's against the law to drive if one is not properly treated but it's not a law to protect our lives should electricity become unavailable.  To complicate matters, I must take a medication nightly which renders me virtually unconscious (treats another severe, rare sleep disease).  CPAP machines do not provide 100% protection to anyone; therefore, apneic events will occur despite 100% compliancy in use of a CPAP machine.  Nonetheless, the CPAP machine is saving my life (again) during those times when an apneic episode occurs and my brain is unable to respond appropriately by "jumping into action" and attempting to jolt my body awake. Should an electrical outage or power failure occur at these times, I will stop breathing, my brain won't respond to wake me, and I will die.  Sleep apnea is a potentially fatal disease, but utility companies do not consider CPAP or BiPAP equipment to be essential or life-saving devices, they do not grant any kind of priority to users when determining who will be serviced first, and they do not consider users eligible for life-saving generators.  I have learned in these twenty frustrating, heart-wrenching years that our lives are at the mercy and in the hands of utility companies, angry, uneducated housing employees and medicaid caseworkers who seem to enjoy their ability to misuse power, physicians' clerks who could care less, and volunteer workers at food cupboards who shouldn't bother (volunteering) and have the power to control who gets what.  I can do everything correctly, fill out reams of forms on a regular basis (while I can't do anything else because I'm so limited in my ability to function and complete even daily living tasks), make dozens of phone calls, visit all necessary doctors, renew prescriptions and drop them off, go to foodcupboards begging for protein, vegetables, and fruit, but it's all futile.  Ultimately, the rest is in the hands of employees and volunteers who know or care nothing about the health or needs of those less fortunate and have the last word in our health care.  I used to believe if I could find a good doctor and had medical insurance, I was in good hands.  Ha!  What a joke.  That is truly insignificant in today's world.  I coped and managed considerably well for fifteen years, but the last five years have truly done me in.  The sicker I have become, the less I am able to function, the more mistreatment I receive and the less help I am able to obtain.  Only five years, and I have truly grown bitter, depressed, hopeless, and definitely have lost my faith in humankind.  I don't care who runs for the next election, what new program emerges...bottom line, the disabled are continuously overlooked and consistently fall through the cracks.

By heinsohn On 02-14-07 01:50 PM

1-9-07 In response to your e-mail: I have found that examining tables are too high to access from my wheelchair.  I have also found that most tables on diagnostic equipment are too high and too narrow.  X-ray machines used for mammograms are too high to access for a person who uses a wheelchair.  I appreciate that Senator Harkin is addressing these problems. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:51 PM

1-9-07 Dear Elizabeth, I am writing in response to NCIL's Action Alert regarding access to medical equipment and services in support of Senator Harkins proposed legislation. In addition to being an advocate at a Northern Illinois Center for Independent Living, I am the mother of a 21 year old college student who sustained a c-6 spinal cord injury five years ago. At the time of my sons injury, we were fortunate to have a very good health insurance policy through my employer. Most of the acute care and in-patient rehabilitation therapy were covered because of our insurance. When it came time to order equipment, however, it was somewhat of a different story. Aside from the wheelchairs, which his therapists deemed a need for a power as well as a manual chair, my son requires a shower chair that he can self propel in order to perform his bowel program and shower independently. Insurance considers this a "luxury" item and though we appealed three times, they would only cover about $300 of the $1100 cost of the shower chair. We paid out of pocket for one of the wheelchairs as well, as insurance would only pay for one. Shower chairs for people with certain disabilities are not luxury items, but essential to a persons ability to live as independently as possible. This should change. The second issue that I wish to raise is the fact that once an individual with a spinal cord injury is discharged from rehab, there are no options for ongoing outpatient therapy, rehab or simply supervised exercise. Exercise programs and continued therapy are proven to reduce secondary complications such as skin issues, urinary tract and bowel issues, and combat weight gain. I believe that in my son's lifetime he will have the opportunity to regain his abilities, and I wish the programs were in place to allow him to be ready when that day comes. Prior to his injury he was the starting center for his championship high school football team and worked hard to get into excellent physical shape. In the five years since his injury, he has gained nearly 40 lbs and I fear for his health and longevity. Please convey my thanks to Senator Harkin for his constant care and support of the issues that affect people with disabilities. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:53 PM

1-9-07 Elizabeth, you can share my story with anyone who would listen.  Thank you. I received a telephone call about 2-3 weeks ago from the medical equipment company Jeffquip, explaining that Medicare denied the lift and I would have to pay for it.  I asked them to send me the paper work as I would appeal it.  To date I have not received the denial or information where I can send pictures documenting why my lift is so important and NOT a luxury item. Thank you Elizabeth. PS Elizabeth I have a new issue regarding age discrimination, the ADA, and personal assistance services.  I wrote to Steve Gold (attorney) and not sure who else I should tell my tale of woe to.  Can you advise please. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:54 PM

Hello Elizabeth, Recently, the medical supply company Jeffquip informed me that the lift on my power wheelchair, known as "the elevator lift" has been denied by Medicare.  I explained that the lift  is not a luxury item --- Everyday it helps me in and out of bed, retrieve items in  and out of cabinets, freezer and my closets.  Before the conversation ended I asked to please inform Medicare that without the elevator  lift on my power wheelchair I would need a Personal Assistant just about around the clock. Most recently, a plumber had come to my home to discuss placement of a washer and dryer.  Because of limited space, we discussed a stackable washer and dryer.  It is only because of the elevator lift can it even be considered. . This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:55 PM

While I have never been denied medical access, when I worked as a case manager with the elderly, I saw it several times.  Doctors insisted that my elderly and frail clients get onto tables that were too high and one even refused to treat someone because she couldn't get on the table.  Would you be interested in me writing that up or are you looking for stories from the folks who were denied access? This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:56 PM

1-10-07 Elizabeth, I am person with a spinal cord injury who uses a wheelchair for mobility. My biggest complaint when accessing medical services is the lack of accessible examination tables in almost all of the hospitals and clinics that I've been to over the past 17 years. This is something that needs to be addressed. I find it degrading to have others lift you onto an examination table and then the tables are usually so narrow that I've actually fallen off on two occasions. Please continue to address this issue in the Promoting Wellness for Persons with Disabilities Act. Thank you! This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:56 PM

1-10-07 From where I sit, life requires courage.  As a wheelchair rider finding an accessible mammogram has not been easy, even here in Minnesota where we have very high standards of healthcare. Quality healthcare overall is a very different matter indeed from wheelchair accessible quality healthcare.  Diagnostic machines set on a long vertical track are few and far between and there is no repository of accessible information to facilitate appropriate referrals.  In 2000 the medical facility where I had been getting mammograms closed.  My very large HMO was unable to tell me if, and where the mammogram machine had been moved.  Nor could they tell me where I could find another.  They suggested I come in and be held in the air up to the machine while seated in my chair.  Being held in the air with part of my body caught in a machine was not the answer, if someone coughed I would be a rolling medical disaster story.  I was seeking a standard diagnostic test for a woman in her late 40's, not a lawsuit. Clearly we needed another solution. Over four years, my doctor's staff and I looked - an accessible machine was not found, but a lump was.  Disease moved the system to action as prevention had not.  In two days my HMO found an accessible mammogram machine at the University of Minnesota Breast Center.  After multiple surgeries and chemotherapy for breast cancer with metastasis to the lymph nodes, I am back at my desk.  But I do not enjoy the prognosis of those who had access to early detection.  The Promoting Wellness for Individuals with Disabilities Act of 2007 would allow Americans who follow me on wheels to enjoy the medical advances available to those on foot.  This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 01:58 PM

1-10-07 Dear Elizabeth, I have a difficult time getting access to medical examinations due to my disabilities. For me, and others with a host od serious physical disabilities that cannot be observed except on blood tests or on MRI's, medical personell do not realize we are "disabled" as we appear "normal" to them.  I have been told "you can do that" when I explain I cannot.  I have not been given enough time to complete "tasks" shuch as dressing, or undressing.  Even worse, no one consideres that perhaps changing clothes in not even necessary for the exam. I became disabled in an HCV tainted blood transfusion on June 8th 1981. I am one of the 17% of people who are symptomatic right away. However, there is mush disinformation about this serious disease, even today, and many medical personell do not believe thate are any people with symptoms at all, as all they focus on is the "mantra" "most people don't have symptoms." Therefore it is difficult for me to get the support, or treatment that I really need. I had refused the transfusion, but was held and forcabally transfused. There should have been alternatives. 15 years later, after many doctors tried to find out what was causing my symptoms, I was "mis-diagnosed" as being psycotic and delusional because I was experiencing severe itching, pain and nasea, and had repetedly asked "Is it possible I got a disease in the blood transfusion I recieved in 1981? Do you have any blood tests that could find out?" The disability community also seems not to understand that paralisys or blindness are not the only debilitating physical conditions, and there is little sympathy, little understanding, and no support for those of us who can walk around and see. Just the same, we need help and we don't get it because others see our request for help as us being a pest or worse, "crazy." I hope you can succeed in getting access to medical services to be improved, and that all disabilities will be supported. Please see the second e-mail that follows. 1-10-07 To Whom it May Concern: I was infected with HCV in a tainted blood transfusion during natural childbirth on June 8th 1981. By August I was symptomatic. I had profound fatigue, itching, continuous "flu-like" symptoms, "wrap-around" headache, chills and sweats, neasea among symptoms. I was unable to "work" effectively for more that one hour per day. I could not "concentrate," and felt extreemly sick at night, rolling about, dreanched in sweat, or feeling ice cold, even though it was a hot summer, and I had no air conditioning. Only 17% of folks infected with HCV exibit symptoms immediatelly, most don't have symptoms until they experience liver failure some 20-24 years later, and there was no blood test for HCV until 1992. Therefore, when I went to my doctor, and when he referred me to other doctors, no one could figure out what was the cause of my "weird" (one doctors term" for my symptoms. By the mis 1980's I was experiencing "balance" problems, elevators caused severe pain to my ears, and I had repeted "mysterious" ear, sinus infections, including spontaneous breaking of the ear drum with blood and pus flowing out for several days. I had a full exam at the Eye and Ear but no "cause" could be found. I was tested twice for HIV and two doctors, one a GP and one a dentist believed I had a "virus." Another believed I had "some kind of allergy." Whenever I was subjects to "stress", symptoms would increase, I would be covered with hives, as the iching became unbearable. I was treated with over the counter meds like tylenol, ibuprofin, benidryl, and prescripting meds, including antihistimines, anti fungals and anti biotics. The symproms did not abate. By the 90's I spent most of my time in bed, as walking and sitting became increasingly more painful. Having been very active before childbirth, (I was a size 8 then) I was worried about my "health" and weight gain, and tried as hard as possible to "exercize." I would take my son to the zoo, or a park, but by the time I got home I was so exhausted I would literally "pass out." My pediatritian worked with me to devise a safe way to "watch" my son, and I was forced to send him to day care when he became older and more mobile. All this time my doctors were very concerned. My "flu-like" symptoms kept me sick all the time, my skin was itching from no apparent cause, I had rashes and hives, and my ears were constantly "infected." No cause for these "allergy like" symptoms could be found.  The chills and sweats continued, and the neasue was debilirtating. I also developed internal bleeding "events" showing "brusing" where I had not touched anything. I developed heart palpatations, and severe pain in my lower legs, feet, arms and hands. Although I had a one year maternity leave I was unable to return to teaching due to these symptoms. I tried to work, but was unable to do even simple tasks, like write a coherent lesson plan. I was miserable, with "flu", ear infections, itching and balance problems. I could not follow throu8gh, write, type, I could not even "follow" a movie. I had muscle spasms, weakness and fell often. My "balance" problems were neither "dizzyness" not "..." Most of my friends and family believed I was "lazy and crazy." i would drive up to my mother's house for thanksgiving, and go into the bedroom, lie down and sleep until the meal was served. Then I would not "help" with the clean up either. Although my doctors knew I was ill, ordinary folks could not "see" anything wrong with me, other that the hives and ear infections. In 1996 my sister had come to my house to help me clean. She used lots of chemical cleaners in spray bottles. Later that day I lost all feeling in my lower legs and collapsed in a mall parking lot. I called my friend who took me to the Hostipal. I had itching, pain/pressure in my ears naseu and weakness. I asked the ER doctor, an internast, if my symptoms could be caused by something I may have gotten in the blood transfusion. She tested me for alcjholol and drugs all tests neg. she did not reveal the liver function tests came pach very bad. she insisted that I was psycotic and dilusional. "proof" of my dilusion was I kept asking if there was a test to see if I could have a disease from the blood transfusion. She did not order any hepititis tests. In 1999, changing doctoers again, the new doctor ordered a HCV test based on my history of blood transfusion. It came back positive. he referred me to a Hep Specialist at Mass general. One thing I learned was many folks with HCV compl;ained they couldnt sleep at night. he said the liver does most of it's work at night. he refused to order geno type testing, however, and tried to get me on a double bling trial of a new med for HCV. I changed doctors again, and had a second opinion with another Hep specialist. She immediately ordered a geno type test, and I am Ib. That is not good news, she informed me, as none with my genotype who are symptomatic right from the beginning have ever had a positive response to the Chemotherapy currently being offered for HCV. When I questio0ned her, she gave me the address and phone number of amgen, who did send me the comp-lete info on this. She was right. she also affirmed my question that the interferron in my own body was fighting virus and was the cause of my symptoms, and was the reason, it was believed, why folks who were symptomatic did not respond to the interferron based Chemotherapy. I applied for SSI disability in Dec 1999 and was accepted right away by March 2000, as all my past medical records showed the symptoms and I had a history of trying to work, but not being able to perform the work due to disability. So, you might say that my symptoms are consistant with those on Chemotherapy. In addition to the Liver disease and symptoms, I have deen dxed with sever cervicle osteo atrhritis, in my neck, also lordosis, spondylosis, itis, formatial nerrowing of the nerve canal, stenosis, among other problems. I have radiculkitis which is triggered when my neck gets "jerjed" of "jostled." This could explain some of the symptoms such as pain in the extremities, I cannot hold an umbrella or cane except for a very short period, when I type, like now, my lower fight arm feels like it is broken, and my left arm feels like it is burned. Every disk in my lower back is "bulging" and this could explain the weakness I experience in my legs, and the pain I have when I lie down. When I walk on a surface with a cross slope I feel neasue and a "woosie" feeling. Not exactly "dizzy" but I lose my balance. I would compare it to "sea sickness." I can't walk right, experience pain and fall without warning. I obtained a dog and trained her to be a service animal. I followed guidelinbes I found on line, and had excellent results. The dog is trained to perform work for me. She does many different things. One thing is she helps me to get up, up from a chair, up onto thye bus, etc. I have trained her to get me up by ipm in the "morning." I have trained my dog to walk in front of me, pulling with a constant tension, providing a counter-balance. This relieves my neck from constantly being jostled. she walke in fron and "parts the crowd" so folks dont bump into me. I have taught her both individual word commands, and well as a single command that has many tasks with it. I have trained her to walk in the cross walk and head for the curb ramps, which here in Cambridge do not line up with the cross walks. In addition I use her at night to do bracing, as I am quite ill overnight, and do not fall asleep until 4-6am. My previous dog was trained to alert me when I was about to "pass out" from my liver problem, but my current dog does not show the ability to sence my liver problems. perhaps when she gets older. My service dog is also a medical benifit due to her presencer alone. for example, since I have had her my blood perssure has gone down to normal. In addition, she is trained to help alieviate the pain, thereby minimizing my reliance on meds which are bad for folks with liver disease. since I got my service dog, and stoped taking "meds" many of my symptoms have improved greatly. I have regained my independence and, with the encouragement of my therapist, I am able to go out and become "involved" with my community. This "activity" has also produced a healing effect, and resulted im my overall condition being stabelized. al;though my dog can help me with my balance, help me with my locomotion and help eleviate the necissity for meds with bad side effects, she cannot help me enjoy a symphany, read a book or a report, nor can she type for me, organize thoughts and follow trouugh with "projects." she cannot help me sleep at night, only help aleviate the pain, and "be with me" so I am nopt so terribally alone. She has enabled me to go out, make friends, and I am not isolated the way I was before I got my service dog. I have been denied access when acompianied by my service dog, on the ambulance, and the hostpital refused to have her present. This was for a fall and a sprained ankle. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:02 PM

1-10-07 Recently, I needed a second mammogram at the Comprehensive Breast Care Center at Brigham and Women's Hospital, Boston.  I always fear what will happen if my MS progresses any further, so I am unable to stand for a few minutes while the mammogram is done.  Much to my shock, the Center had moved without bothering to make the entrance accessible!  I am all too used to inaccessible exam tables.  The doctor told me she was strong enough to personally lift me up to the table, which was a scary , humiliating experience.  How are disabled women  supposed to avoid breast cancer when the health care system disregards their rights to equal access? This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:03 PM

1-10-07 I am a physician and I have a spinal cord injury (T8, complete).  I have a wonderful family practice doctor.  However, I can't think of the last time that I have had a complete physical exam since I have been injured (11 years) because the tables at his office are too high for me to get onto.  At best, he listens to my heart and lungs while I am sitting in my wheelchair.  I have only had one pap smear in the past 7 years (I am 40) because it seems like it is just too much to ask the people at his office to lift me up to the exam table.  Still have not gone for a mammogram or colonoscopy (my dad has colon cancer so I know that I am due to get one soon) because it seems like such an effort to have to follow through, explain to technicians my needs, get them to lift me (if need be), etc.  And this is coming from a professional who is a doctor themself!  I don't know what other folks do. I am also attaching 2 reports in which I am an author that I think are the first population based analyses of barriers to health care.  While they were performed in LA County, the county has a population of 10 million people, is very diverse, and I think is an important microcosm of the US.  I don't think that our findings are limited by geography but I think that they tell a common story across the nation. Feel free to contact me for further information This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:05 PM

1-10-07 Dear Elizabeth I worked at Lawrence Livermore National Lab (LLNL) and used my own MRIs for a presentation I gave a group of doctors there this PowerPoint presentation on curing the SCA3/MJD protein, the active part of the disease I have. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:07 PM

1-10-07 Hello Elizabeth, I am so happy to hear about this legislation.  I have lived with Multiple Sclerosis for 27 years and have experienced hundreds of incidents of inaccessible medical care. I have progressed from one cane to using a wheelchair continuously. Exam tables in physician's offices are the most challenging. My wheelchair/scooter has a power seat which will raise me up close to the height of most exam/ treatment tables. If not for that, I would have to forego treatment.  I do live in a large metro area ( Chicago) with a Rehab hospital, so I believe we have better access than most. I choose my physicians and hospitals according to accessibility. I am a nurse and have often advocated for equal access.  I am also a trustee and GRC/advocacy committee chair of the greater Illinois chapter of the National Multiple Sclerosis Society. We will post this email on our website. Please let me know when you have a bill number so I can ask Senators Dorbin and Obama to co-sponsor. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:07 PM

1-10-07 i lived in arizona. i had a job that was hurting me. i ended up having neck surgery and being fired. right now i am in michigan. i am the last on the list for anything. i still have no medical because i have no kids they have to determine if i am disabled. in the meanwhile i cant get x-rays i need or get glasses or a wheelchair so i can better get around stores. i sit here and wait on administrators to decide my fate when they get around to it. i never wanted to be in this position but i found out too late i have a rare disorder that wrecks the spine. i am only 39 and so far no one speaks for me thanks This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:08 PM

1-10-07 I have had issues when I need a dexxa scan. I can not get on the table by myself and Kaiser will not provide a person to assist in getting me on the table. I weigh about 110 pounds. I have to bring someone with me whenever I need this test (next week is the second time). It is really inconvenient for me to have to arrange someone to go with me. If you have any questions or concerns, please do not hesitate to contact me. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:09 PM

1-10-07 Dear Elizabeth, thank you for asking!  As a paraplegic for 25+ years I have encountered many problems with access and with care.  Once when I went for a bone density test, they had to reschedule it because they forgot that I needed to be lifted onto the table!  I I had to be lifted onto the tall table many, many times, finally the doctor had a somewhat shorter table they still had to life me onto.  Only once did I get to use a short table specifically made for paraplegics at the Rehab section. In March 1992 I had surgery for a radical cystectomy as I had bladder cancer from wearing a catheter for 11 years.  Could that have been prevented?  Who knows my paraplegic friend had it at the same time and we both had the same operation. In March 2000 I ended up with a terrible decubitus and drove myself to the surgeon's office at Kaiser in Sacramento to have it debrided and then drove myself home!  No one had offered to help me nor did they think to admit me to do this procedure.  It was infected and I ended up going to the ER THREE times over the next 2 months!  The first time, they kept me for 4 days and gave me CIPRO which I had to pay for myself! I had a nurse come to my home 2x a day to dress the seeping wound but had to fend for myself as I lived alone.  Fortunately I had good neighbors and a boyfriend who came and helped me out.  The second stay was the same as above but with a different medication that didn't help either; however, a nurse, ON HER OWN (I think) took a culture which determined that I had MRSA.  The final time I had a 105o temp and they kept me for 6 weeks because of the MRSA and they couldn't put me into a nursing home/convalescent hospital until I was deemed non contagious.  Then they took me to a convalescent hospital where I had to continue lying in bed with them doing my bowel care, etc.  The food was awful and one of the aids managed to spread c-dep (diarrhea) to the whole wing. Finally I was liberated after about 10 weeks. After being a Kaiser patient for 12 years, I became patient of my husbands' doctor who didn't know anything at all about my disability.  He never examined me and therefore did not catch the return of my decubitis.  It festered again until I was able to transfer to a Dr. at the UCD Med Center.  On my second visit after they had lifted me onto the table, I said why don't you get a lower accessible table?  They said, Oh we forgot we just got one.  I used it a lot over the next years.  At some point they moved it to a storage room but I insisted on using it anyway.  This new Doc was great and did a lot of testing finding that I had very high Triglycerides!  I don't ever remember any blood test results at Kaiser (except the coumadin I took for 12 years). Unfortunately the sore came back sometime in 2002 and I futzed around with it for another 3 years getting a home nurse again to help try to get it under control.  Finally I insisted that I get a CAT Scan to check whether I had an infection (I did).  In Jan 2005 I ended up at the UCDavis hospital  where they tested me and finally debrided it again.  Then after 2 days I was instructed on how to administer my own IV and was sent home with my husband.  Again the nurse came several times a week to check up on it. Fortunately my husband was able to help me and I only got up for my bowel care 2x a day.  It took me about 5 months for it to finally start to heal.  I paid for my own Aquilla alternating air pressure cushion ($2600) which has kept the sore at bay so far. After that in October my doctor told me I had Diabetes!  In addition, I have high blood pressure, and am obese.  THERE SEEMS TO BE NO OR LITTLE MEDICAL EDUCATION FOR HOW TO TREAT PEOPLE WITH SPINAL CORD INJURIES OR OTHERS WHO NEED TO USE WHEELCHAIRS.  Now over 60 years there have been people who have survived SCI, etc. why aren't they teaching doctors how to help people live and cope with issues that are brought on by disabilities and the problems of normal aging and heredity. (My father had heart bypasses, my grandfather had heart attack & strokes & my grandmother had high blood pressure and strokes.)  Hope this helps This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:10 PM

1-11-07 Ms. Leef,  The following tale is, in my mind, both amusing and instructive of the difficulties people with disabilities have in gaining not only basic access to medical care, but access that is safe. I have Charcot-Marie-Tooth disorder (CMT). Among other symptoms, I have difficulty with balance that is not immediately apparent to most people, even to those in the medical professions. In 1999, while birdwatching in northwestern Indiana, I tripped, fell and broke my right tibia. As described to me, the top of the tibia looked as if it were a small piece of wood that had been repeatedly pounded by a hammer at one end. The small county hospital where I was taken told me they could find no evidence of a break. My wife saw the x-ray and nearly fainted when she saw the extent of the damage. I believe I was sent home (3 hours away) because they were frightened by the complexity of such a break on top of my CMT. Once back home, I was sent for an x-ray, again. The technicians asked me to stand on a small platform that was several inches taller than a standard step. Not withstanding the severity of the fracture, they seemed to know nothing about the symptoms of CMT which are documented in my medical chart. My wife and I first responded with a surprized laugh, then explained to them how difficult and dangerous this would be. While this is not as clear-cut an example as, I'm sure, many others can provide, I hope it is of help in supporting the bill offered by Senator Harkin. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:11 PM

1-11-07 Hello,  I am writing you in regard to the insurance/medical  horror story of my child. He is presently a 14 year old Asperger teen. My son is where he is today because of  my background in special education and our determination that he will succeed. My son was 3 years old and had just recieved his chicken pox vaccination, for 3 long days he ran a low grade fever. After the 3rd day, he could not walk, talk or do anything that he was able to do before. Being an educator, I knew that treating the symptoms before diagnosis was the fastest way to get results. So we started Occupational, Physical and Speech therapy. Now mind you, our insurance company denied it because they said he had not been in an accident or had a stroke. So we paid out of our own pockets. My husband took on extra work so he could recieve the services. Our next step was to get a diagnosis to what had happened to our child. We went to  his doctor and he recommended Cincinnati Children's. So we started the long process of getting prior approval. This took at least 3 months for this, and we had to wait. We were finally rewarded with a confirmation number to go with the evaluation. So we arrived at Cincinnati on time with the insurance card in hand, and low and behold. The insurance company denied entry for the evaluation even with the confirmation number. We had to make the decision right then what would be the best choice for our son, so we decided to make payments and fight the insurance company. He was diagnosed with Asperger syndrome and low muscle tone. Now started our 2 year battle with the insurance company. This insurance company was the one that teachers recieved and they were suppose to be good. How can we get the doctors to do what they need to do, if they have to fight the insurance companies. I understand the physicians need to be taught but the physicians that do understand don't know how to get the insurance companies to pay for the recommendations. Evaluations, OT, PT, and speech, not just 20 times a year, for what the child needs. Parents and physicians need help, the whole medical community needs to know that if a child recieves services early then the chances of success is more than doubled. Please help parents to get the medical needs that each child deserves. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:11 PM

1-11-07 Dear Elizabeth:  Please ask Senator Harkin to include in his bill that women who use wheelchairs must be given the option of a thermography scan rather than a mammogram.  Mammograms are excruciatingly painful from a seated position, as it necessary, basically, to hang one's self by one breast at a time from the machine.    Thanks for your consideration. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:12 PM

1-11-07 My story is my mother's story, but she has passed away since this happened.  About three years ago, I took her to the doctor because she had persistent stomach pain and nausea.  I won't even go into how difficult it was to get transportation for her in a wheelchair.  When we got there, the doctor wanted her to get on the exam table and lie down.  It was way too high, so the doctor and nurse tried to help by grabbing her under the arms and lifting.  This was excruciating for Mom, and they could not get her up.  Even if they had, she could not lie down flat on her back because of her spinal problems.  She ended up having to go for x-rays because the doctor could not palpate her stomach adequately while seated in the wheelchair.  The whole experience was awful for Mom, and she resisted going back to the doctor ever after this experience. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:13 PM

1-11-07 Having been born with Spinabifida, and having just turned 60, there aren't many negatives issues that I haven't faced in the health care arena. Currently, I am dealing with a pressure sore for which I spent 4 and a half months in a nursing home so it could heal. The stay in the nursing home did little to help it to heal. I am currently dressing it myself and it is staying stable. It was able to become a stage 4 wound because my doctor told me on two different visits that it didn't need any attention-it would take care of itself. After hearing that a second time I found a new doctor, and because of her, the wound begin to get the attention it needed. I can't count the number of times I have had to be lifted on a table because the facility didn't have a lowered one. Now, when I arrive for a visit with the doctor, often the accessible table is being used for other things. In February, 2006, my doctor approved modifying my power chair so that it would recline in order for me to remove some of the pressure from my wound when I was at work. The modification is still inot complete. I have been denied a mammogram because "I didn't tell them in advance that I was in a wheelchair and that means the mammogram takes longer". Some of my observations about health care that come about because of my personal expereinces are:     --Most facility don't have accessible equipment for use by people with disabilities;     --When they do have accessible equipment most often staff has not been trained to use it correctly;     --Often staff use the accessible equipment for things for which it was not intended, and therefore, the equipment is not available when needed;     --Attitudes by many health care providers have not changed with the times-often they still consider those of us with significant disabilities as "sick". These observations have come about not only because I have a significant disability, but because I adopted a little girl with a significant disability, also Spinabifida, 24 years ago, and she faced and continues to face some of the same barriers to good health care that I faced. So I have seen the health care system from a personal perspective and from the perspective of a parent. My assesment is that the system has not made the adjustments over the years that are needed. Thanks for the opportunity to share my story. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:14 PM

1-12-07 My daughter was 8 when she had a stroke and became wheel chair dependent, because of this we had to change her dentist and so I got in the phone book and called a few dentist after carefully checking out the dentist I found one that was for "kids" so I called them before any thing else I told that my daughter was in a wheel chair, they assured me that this would be no problem that they have had wheel chair patients before so I made an appointment. After weeks of waiting it was time for the appointment we got her in the van and drove to Charleston, there we found the dentist and in the front were 4 stairs, I went inside to see if this was the right place and they said yes and I asked if they had a back entrance for the wheelchair they said no, they replayed that they could carry the wheel chair up the stairs that's when I took them out to show them the 400 LB wheelchair with ventilator on the back... Of course they said that they were sorry but that didn't get my daughter to see the dentist.  This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:14 PM

1-13-07 I have been on disability since March of 2003.  I have autoimmune hepatitis, ulcerative colitis with only 10% o f my colon, hypoparathyroidism, epilepsy, osteoarthritis, osteoporosis, and now have to be tested for numbness and tingling in my fingers, which has been going on since 2000. I don't have special equipment, but I am constantly tired, have difficulty walking, can't bend down, and because of medications that I take, am medically compromised, which leaves me at risk for other diseases. I have some cirrohis of the liver, had biopsy in 2000 and have to have another one.  I am a 59 year old single woman who has worked most of her life as a counselor, helping adolescents, adults with psychiatric problems, with chemical dependency problems, and everything else in between.  But when I became sick no one helped me, I lost my job. This past year my total income per month was $1,119.50.  I spend $426.00 per month on suplemental health insurance, $88.50 for medicare, $600 for rent, $53.39 for a medicare part D prescription drug coverage.I have gone through over $12,000 this year, mostly on medical expenses. But somehow, the government doesn't see me as "in need."  Why?  Because I have some money in the bank.  Instead of taking in to consideration what your income is and what you spend per month, the government does not see it this way. In 2005, I was eligible for premiums to my discount drug prescription card and received a discount on my medications (I have to take 8 medications) because of my low income.  I don't have a house.  I don't have a car.  I am in pain most of the time.  Believe me, it is not a quality life if you have to figure out how many more years I can afford to live until my money runs out.  I know people who are on "disability" that have the government pay for their housing (most of it), get their medications free, have link cards, and get almost everything else free.  And they are not sick, they just don't want to work.  They take their money out of the bank in "travellers' checks" so that it won't be reported.  This just does not make any sense to me.  Can you help me? This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:16 PM

Elizabeth, (2nd e-mail 1-19-07) I do have a story for you, and not  a pretty one.  It's mine.  I was refused treatment.  I lost my job in March of 2003, as I was very sick with Autoimmune Hepatitis.  I was running out of money, so I moved from the north side of Chicago back to the south side, in with my mother. Since I had moved, I had to change doctors.  I went to see a Dr. Parakrama DeSilva, 4248 W. 63rd street. I chose him because he and  my gastroenterologist who treated me for the hepatitis were both at Advocate Christ Hospital.  I told Dr. DeSilva that I wanted to see him, as I was supposed to see him every 4-6 months.  The next time I went back to him, he said "So you want to be treated for Autoimmune Hepatitis?"  I told him yes, I wanted to continue with my treatment.  He told me that there was no such doctor there (at Christ Hospital) by the name of Dr. Majmundar, and that I should find myself a new doctor .  He then walked out of the room in a huff. This was in August of 2003. His secretary gave me a referal for another gastroenterologist who was not a specialist in Liver Deseases.  I had to find a new internist, as even if I went to see this specialist, I did not have a primary care physician anymore.  I finally got in touch with Dr. Majmundar in November of 2003 (my mom had died in the meantime and everything was a mess) and found out that yes, indeed, he was and had been at Christ Hospital all along.  But in a few weeks, he was leaving, and my insurance at that time was address-specific and would not pay for me to see him at his new address.  I was so disgusted.  I did not see anyone until August of 2004 where I saw Dr. Majmundar at a location in Countryside, where BC/BC HMO finally said I could see him at. The short version is that this Dr. DeSilva refused to treat me after I told him I had autoimmune hepatitis.  He did not bother to contact the University of Illinois, where it was confirmed that I had this disease, he lied, saying my gastroenterologist was not at Advocate Christ Hospital, and he basically left me out on al limb.  In May of 2000, I had had a liver biopsy that showed some cirrohisis and scarring of the liver.  I was approved for disability because of this.  Sorry this is so long, but I'm trying to not leave anything out.  Do you know who I would contact in Illinois about this? This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:20 PM

1-13-07 DEAR ELIZABETH, I HAVE ACTUALLY LEFT THE HOSPITAL BECAUSE I WAS EXPECTED TO GET UP ON AN EXAM TABLE AT A TEST THAT WAS 8 TO 12 INCHES HIGHER THAN MY WHEELCHAIR.  I WAS OFFERED NO HELP WHAT SO EVER.  MY HUSBAND WAS EXPECTED TO LIFT ME UP TO IT.  THERE WAS ALSO NO DRESSING AREA AVAILABLE TO ME.  GETTING UNDRESSED WOULD BE ACHIEVED BUT GETTING DRESSED WOULD HAVE BEEN A BIG PROBLEM. I AM A PARAPLEGIC, NON-WEIGHTBEARING, T 6 INJURY.  THIS WAS AT THE CONCORD HOSPITAL IN NEW HAMPSHIRE. I HAVE BEEN GOING TO DR'S OFFICES FOR ALMOST 10 YEARS NOW AND HAVE YET TO FIND A SINGLE EXAM TABLE ACCESSIBLE TO ME.  MY HUSBAND HAS TO PICK ME UP.  TRY GETTING AN X-RAY, NO FUN AT ALL.  WE ALSO HAVE BEEN TO DR'S NOW IN  CAPE CORAL, FLORIDA  AND NO CHANGE.  IT IS VERY SAD. I BEILIEVE MY HEALTHCARE IS BELOW WHAT IT SHOULD BE BECAUSE OF THIS PROBLEM.  I'M JUST TOO MUCH TROUBLE WE ARE NOW IN OUR EARLY 60'S AND MY HUSBAND IS HEALTHY.  WHAT WOULD HAPPEN TO ME IF HE HAS ANY PROBLEMS?  WE TRY NOT TO THINK ABOUT IT. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:21 PM

1-14-07 Goodmorning, Elizabeth, I am 62 years old and I see abuses all the time in this country to me and to Senior Disabled in Convelesent Homes.  We need cameras in the homes and in the hospitals in every single room to stop this.  Stealing of their clothes,jewelry,etc. I was denied access to my doctor for over one year,aprox. one and one half years because the doctor's receptionist refused to check my HMO Insurance ID Number and thought I was another patient with the same name.  I fell on my knees and injured my left knee and had to take care of it myself for two long years with no help from doctors. Also, I went to Valley Radiology in Poway and was terribly mistreated.  Given too many X-rays, aprox. 12 of them and down talked by their Receptionist and watched numerous other Seniors down talked in the same way.  I kept reporting this until they finally, after about a year, removed the mean Receptionist. I will do everything I can not to go into a Convalesent Home or a USA Hospital because they are killing our own Americans there,not trying to help them.  I hope this can help stop these abuses This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:22 PM

1-15-07 Dear Ms. Leef, I just received this email and I feel compelled to tell you a bit of a story that is related to your request.  I am a special education expert and have worked for many years to promote the welfare of members of my community in DC and my own family.  However, I have had more difficulty being an advocate for my brother who lives in an institution in Indiana.  I was appointed his guardian several years ago.  And despite being his guardian, it is difficult for the institution to respect my wishes with regards to his care when he resists treatment.  In this particular case, my brother needed dental care for many years and I authorized the hospital to put him to sleep if necessary to provide dental treatment.  What ultimately happened ( and this occured in November, 2006) is that all of his teeth were pulled.  I wasn't notified.  I learned this on a phone call to him on Thanksgiving.  I was crestfallen.  I know that my brother is difficult to treat; he has mental illness and he also has an undiagnosed learning difficulty.  But when someone is a guardian, that person is authhorized and is indeed responsible for making decisons about their care.  I think this example shows that otherwise well meaning professionals do not understand the nature of guardianship.  Further, I think that for many people with disabilities, that by promoting guardianships, that the quality of their lives and opportunities for well being become strengthened.  I am not in any way opposed to self-determination goals.  But I think we have lost sight of the basics in terms of ensuring that people's basic health needs are maintained. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:24 PM

1-15-07 Elizabeth,  My staff has provided the following stories to support the need for improved legislation regarding wellness and healthcare for PWD. We strongly support Senator Harkin's proposed bill and will be happy to do more advocacy on this issue in the coming weeks. Please review the below stories: 1.  One of my consumers uses a bipap machine to help him with sleep apnea.  His father has the same condition.  Both have completely different face masks.  My consumer has the one that is cheap, barely fits and needs to be regularly replaced.  However, he cannot get a new one for two years because of insurance regulations.  Since it fits so poorly now, he takes it off in the middle of the night, and needs to be woke up by staff to put it back on.  If without the bipap, his organs are deprived of oxygen.  So, everyday, his body is damaged from the lack of oxygen. 2.  Many female consumers who use wheelchairs do not get the benefit of having a mammogram because the equipment is not accessible. 3.  Many of my consumers who use wheelchairs do not get routine pelvic exams because of exam tables are not able to lower.  In addition, many examination rooms are not equipped to transfer the person from their wheelchair to the examination table. 4.  One of my consumers went to the hospital emergency room for treatment for pneumonia.  He was taken to the x-ray room and placed on his side on the table.  My consumer told the technician that he was unable to stay on the table without support because of paralysis from the waist down.  The technician told him that he was okay, let go of him and walked out of the room.  He fell off of the table and hit his head on the floor.  The hospital refused to allow sensitivity trainings for their x-ray staff. 5.  Consumer goes to the psychiatrist to request a medication change to help with anxiety.  The psychiatrist turned his back on her while she cried hysterically for help.  He kept his back to her the entire time until he told her there was nothing further that he could do for her.  She was in and out of the office in ten minutes with no help. 6.  Consumer is in the Janes Street clinic for prenatal care.  The doctor says to her and I,"you are mentally retarded, should you even have a child?"  "Don't you have a guardian to make these decisions for you?"  "Maybe you should consider getting your tubes tied" 7.  Consumer is in the hospital and has been taught to ask what medications that they are giving her.  She and I were looking at the meds and noticed one that is out of the ordinary.  She asks what it was, she was told xanax, but it is a different color than what you are used to.  Later, I stepped around the corner to leave and overheard the nurse tell another that she had accidentally given a double dose of the xanax and had been doing so the entire stay.  She hoped that I would not find out. 8.  Respiratory therapist gets exasperated at a consumer for her unwillingness to comply with treatment.  He says to her "you know, all I have to do cover your face.  No one would even know about it.  Just get it done" 9.  Consumer, her boyfriend and I go the doctor to request that he complete a medical needs form for Home Help assistance.  He refuses to sign the paper because the consumer belonged in a group home because she wasn't capable of caring for herself and that she was wasting the systems dollars to request home help. The consumer is so upset that she walked out the appointment crying.  I disagreed with this doctor and was escorted out of the clinic. 10.  Consumer is hospitalized in the intensive care unit.  I was asked by the family to check on her.  When I arrived the doctor was in the room talking with her.  I introduced myself and he told me that I could not talk with the consumer.  The consumer demanded that I be able to stay through the exam and that he answer my questions.  He told me that she was incompetent because of being sedated and needed a guardian.  I was asked to leave the unit.  Two minutes later I was asked back into the room by the consumer who insists to the nurse that she tell me when she was being moved to another floor.  The nurse refused.  The consumer was taken to the next floor that night and was released the next day.  I was unable to arrange staff on short notice and demanded that the hospital hold her until arrangements could be made.  In addition, this person required and IV antibiotic, and shots of Coumadin twice daily.  The hospital tried to discharge her without these arrangements being made with nursing services.  My complaints to the hospital were unanswered. 11.  Consumer is hospitalized for abdominal pain.  One doctor diagnoses him with undescended testes and told staff to prep him for surgery right away.  I requested additional medical testing to be sure of the diagnosis.  The doctor finally agrees, runs and ultrasound and finds out that the testes are not the problem; it has to be a urinary tract infection.  The consumer spent three weeks in the hospital.  No one was able to find the cause of the pain.  He was sent home on the same antibiotic he been on for three weeks.  We finally changed doctors, who after looking at him decided that he should see an urologist.  The urologist believes that a biopsy of his bladder needed to happen while under sedation and while he was on the table; he should get his testes removed because he had a 5% chance of cancer in the undescended testes.  We refused the procedure and requested another opinion.  He was seen by yet another doctor.  He had an enlarged prostate!  No invasive treatment.  It is treated by medication. 12.  Consumer has had metal rods placed in her legs.  One leg has a significant infection in it.  The doctor simply grabbed her leg, snipped the sutures and began to squeeze the pus out.  The consumer is crying and begging for pain medication before he continued.  The doctor said nothing.  He continued to squeeze her leg until massive amounts of infection came out of the suture holes.  He said nothing after he finished.  Wrote a prescription and ordered her back in one month and walked out. 13. One in which a woman who could not transfer herself was scheduled for a routine physical, including pap and pelvic.  This situation doesn't even involve any specialized equipment, other than the examination table.  Because the woman was overweight and difficult to transfer and the table height was not adjustable, the physician was reluctant to put his staff 'at risk' by lifting her.  To justify his decision to skip the pap and pelvic, he noted that since the woman was not sexually active, there would be no need for concern; saying out loud to her that it was OK not to do it since she 'didn't use those parts anyway' Please keep us posted on the status of the bill. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:24 PM

1-15-07 Dear Ms. Leef. I am 28, and live in Manchester, NH, and am a wheelchair user due to a Demyelinating Disease.  I could make this E-mail very long, but I feel the biggest problem we wheelchair users face, is the inaccessibility of our Dr's offices. A lot of people I have spoken to, and some of my own personal experiences have been: not being able to get onto the tables for a proper exam, not being able to have a certain test done due to not being able to fit in a bathroom, and, not having the correct scale to weigh someone wheelchair bound. If these issues could be addressed, it would be wonderful, and greatly appreciated. I thank you for your time.  This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:25 PM

1-16-07 Dear Ms. Leef,       I recently received information regarding "Promoting Wellness for Individuals with Disabilities Act of 2007" which Senator Tom Harkin introduced.  I am involved in Tampa's disability,by participating in community organizations.  I also serve as a board member for one of the agencies.  I was recently invited to be part of a Model Patient program at The University of South Florida College of Family Medicine created by Professor Dr. Lori Woodard.  I appreciate and commend her efforts in organizing this program on behalf of the university. It creates sensitivity training between persons with disabilities and the medical students as they prepare to pursue their careers. The medical students and group participants share valuable information.  The ongoing feed back  I received, from the Founder of YES OF AMERICA UNITED! Ms. Becky Forsell, throughout this year has always been positive.  This educational program is a model for many other programs to follow in the very near future. The University of South Florida  offers many different medical advancements for people with their treatment.  We are very fortunate in the Tampa area to have such a facility that offers us the most advanced technology and  research in the various medical areas.  What areas are included in the grants or training, which "Promotes Wellnes Program for Persons with Disabilites "?  I recently graduated with an advanced degree from The University of South Florida in 2006. I am presently pursuing business and career interests.  Would a grant be available, along with counseling services  in the areas of dietary mangement or nutrition? I feel that this is an area that many people of all ages could benefit from.  Children need to learn the importance of how to eat appropriately at a young age so that they make the right choices for a lifestyle. The rise in diabetes and obesity in children are issues that we can no longer ignore.  Children who  have a disability, face a "triple" uphill battle learning how to manage everything.  I would be  interested in exploring these topics and assisting the community in this area. I appreciate all of your efforts on behalf of the disability comunity. Please share this with Senator Harkin.  This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:27 PM

1-16-07 Dear Elizabeth,  First I want to express my gratitude to Sen. Harkin for recognizing the pervasive problem of physical access to medical and dental facilities with regard to examination and treatment areas with the "Promoting Wellness for Individuals with Disabilities Act of 2007."  In addition, I want to thank NCIL for its support of this legislation.  As a quadriplegic secondary to polio, I have experienced an almost universal lack of recognition of universal design and accessibility principles in spite of the ADA being in place since 1990!  With the exception of some medical facilities in hospitals and doctors offices dedicated primarily to orthopedic medicine, my experience since 1950 has been that examination rooms and tables and dental treatment rooms and chairs have become more compact and less accessible to persons in wheelchairs.  In my case, my wife of over 40 years must actually physically pick me up out of my wheelchair and place me onto an examination table or into a dental treatment chair because they typically are not adjustable in such a way that allows "transfer" from one to the other.  In the case of dental offices, often the space is so tight that I must be carried from the hall or a nearby room or lobby.  The examination tables are all short and narrow with pull out extensions.  These tables are designed to save space and allow someone who does not require any assistance to be examined.  In my case, after being placed there, I require substantial assistance in being undressed and removing braces.  The size and configuration of these tables makes it extremely difficult to do.  As a result of these access barriers, it has become a growing problem to receive medical or dental treatment to the point that I no longer seek preventive or maintenance health care.  I now only receive medical or dental care when it becomes an emergency situation.  Thank you again for efforts to improve this situation.  This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:27 PM

1-16-07 Hi Elizabeth Leef, I'm not sure if the following story fits what you're looking for, but I'll share it anyway. X-Ray Equipment Inaccessible to Wheelchair User When my son needed an X-ray of his head for dental purposes (it was very clear his gums and teeth needed to be evaluated and treated) we took him to my dentist. Not only was the pathway into her office wheelchair inaccessible but even after we hauled him up the steps to get into the office, the X-ray device was located in a small space in the office;  worse yet, even if it had  been pulled out into a "bigger" space there was just no way for him to have an X-ray taken.  The device was not adjustable enough; the camera lens did not lower or raise enough to be at the level of him in his wheelchair, nor did it have attachments properly positioned and adjustable that could be used to hold his head in place. This attempt to X-ray his head to see all his gums, jaws and teethline, was a colossal failure, causing a month's delay in the full dental evaluation he so badly needed. So we went to a dentist, in another state, and who was used to seeing more patients with disabilities and in wheelchairs, who appeared to have a better more adjustable set of X-ray equipment.  Even though this had greater flexibility, it was still problematic.  The metal "feet" of the standing X-ray device created great manoeurvrabilty problems as he attempted to wheel into the space where a patient was to sit. The manufacturing assumption seemed to be that a person would be transferred into a regular chair to get the X-ray, something not particularly possible for my son. Even though the device had adjustable up/down leveling features, there was a problem, too, with the camera, which was set to automatically "circle" his head to take the X-ray.  It was limited to less than an 180 degree range so we had to pull the whole device around to re-position it (blocking some of the operator controls somewhat), but we made do and ended up "making him fit" to the X-ray device.  Since it had more flexible and adjustable head-holding equipment, we were able to have an X-ray taken successfully after 2 to 3 attempts. Each attempted positioning and adjusting of the device unnerved my 19 year son (with CP and MR ) a lot who was becoming scared of the X-ray machine and the anxiety the clinical staff were manifesting as they couldn't get it to work for him. One of them in fact wanted to cancel the whole attempt! It was only because I was there and insisted that everyone relax and calm down a bit and take their time, that we were able to get this X-ray machine to do the job. The X-ray led to a diagnosis where immediate oral surgery was recommended.  Without this X-ray, he would probably have had abscessed teeth and other consequences from gum infection. It seems to me that at least one manufacturer of standing X-ray equipment could develop one that any size or type of wheelchair can wheel into, that has flexibility so that the head-holding devices are adjustable up and down and sideways, and so that the "metal feet" of the device do not get in the way of the wheelchair, so that a wheelchair user can just wheel into it and have the X-ray taken with a minimum of fuss and ado.  P.S. note that he was using a battery powered custom wheelchair.  We believe that had he been in his more maneuverable manual custom wheelchair the problem would have been similar as these standing X-ray devices do not seem to accommodate to  wheelchairs users well. P.P.S. the biggest barrier to accessible medical care remains attitudinal, in my opinion. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:28 PM

1-16-07 I have a son who is now 29 years old.  He has developmental disabilities, including mental retardation, mild cerebral palsy and psychiatric difficulties.  We live in Virginia.  As a child he had exhibited symptoms of anxiety and depression, and as a teenager I had taken him to a psychiatrist for treatment.  The more serious psychiatric aspects of his problems did not really become apparent until he was an adult, after an accident that left him afraid to leave his room and not speaking.  This then evolved into delusions and hallucinations.  He heard voices and saw people, all of whom were "after him" trying to hurt or kill him.  He is a big man, about 200 pounds, and I was very worried about keeping him safe and comfortable at home. I called the psychiatrist who was then treating him and asked about a short term residential placement to stabilize him and to keep him safe.  I was told that no hospital psychiatric unit would accept someone who is retarded; perhaps an advanced Alzheimer's ward would consider admitting him.  This seemed totally inappropriate. I was also told to "just call the police" if you're worried. For the next two years we went from psychiatrist to psychiatrist in search of someone willing to treat him.  In most cases he was refused service by phone when I tried to make an appointment, always with the line that "we don't really work with individuals who are mentally retarded."  In some cases we would be referred to colleagues who also turned him down.  In a few cases he was given an appointment but we were then told that "we don't really have experience working with individuals like him". Apparently one has to be totally normal to be mentally ill. Finally we found a facility in Baltimore, at Johns Hopkins Bay View, which specializes in treating people with both developmental disabilities and psychiatric conditions.  They helped. When I went back to early psychiatrists who did not refer us to Hopkins to ask why, they said "it is out of state and medicaid won't cover out of state facilities." First off, why won't medicaid cover out of state facilities when there are no in-state facilities available? Secondly, payment was not my question: medical assistance was what I requested.  Determining help based on presumed ability to pay should not be allowed. I believe the mental health field needs to take responsibility for their discrimination and lack of professional care for people with disabilities, including mental retardation. I appreciate your attention to the health care needs of citizens with disabilities.  Thank you so very much. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:30 PM

1-17-07 Hi Elizabeth! Hope all is well with you!  I wanted to send the following anecdotes: Back in 1992, I broke a bone in my hand while being assisted in getting down from a typical GYN table. I'd had local anesthesia and did not direct the staff in how to help me as I usually do. When I reached my wheelchair, I landed on one hand first. Of course, I was sent to an orthopedic surgeon who advised me not to use my hand for six weeks--I use a manual wheelchair and drive with hand controls!  This resulted in an AWFUL six week period in which I had to manage getting around with a splint on my hand....could have been prevented if they'd had an accessible table. I also recall a hospital in a community back in NY. They insisted that they were unable to afford an accessible exam table for the emergency room. Then we discovered that they did have a height adjustable table in the inpatient rehab unit of the hospital. It had been purchased because the head rehab doctor insisted that he needed it because of his bad back!!! I have NEVER had a physician who had an accessible scale in his or her medical office. That means they never really know what my weight is for medication prescriptions, monitoring, etc. Good luck with this effort--it is important! This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:31 PM

1-17-07 Hi Elizabeth,  I received this e-mail / request for stories from a co-worker.  I work for the US Forest Service and I'm also a union representative with the National Federation of Federal Employees. Through my union duties and also through personal experience I have quite a story to tell but I'm not sure if it's something that meets the needs of what you're looking for. Every year thousands of Federal employees are injured on the job and many of these injuries leave the employee with permanent disabilities. Injured federal employes are covered under the Federal Employees Compensation Act (FECA) which is administered by the Department of Labor. While the Department of Labor provides oversight of this program the injured / disabled employee must rely on help from their agency or home unit, and that type of help varies widely.  Unfortunately for the injured employee who becomes disabled in the service of their country, their injury often leads to abuse, neglect, and lack of adequate accommodation. The injured / disabled employee often has to fight with their own agency for fair treatment and accommodation and then must fight with the Department of Labor for medical treatment and payment of medical bills. Unlike the civilian workforce, Federal employees lack attending physician rule and agency specialist often dictate courses of action which place the disabled employee in confrontational roles with their employer over accommodation and placement. Becoming disabled through an "on the job injury" is bad enough but having to fight for your rights afterwards adds insult to injury. The National Federation of Federal Employees looked at this issues on a very small scale just within the US Forest Service and received hundreds of testimonies all of which of which were negative and pointed to massive problems with how injured and newly disabled employees are treated. I don't know if this is within the scope of what you're looking for, but if it is I'd be glad to visit with you to provide you with more specific information and stories. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:31 PM

1-18-07 Elizabeth, My interest in your collecting stories for Sen. Harkin's initiative was immediate joy.  I work for an assistive technology nonprofit in Knoxville, TN.  I am always looking at how we can widen our range to beyond the devices we help people with at the center to deal with inadequate supply of other AT products.  I have been forcing this issue as one we need to address here in Tennessee.  Last year the rolls to our extended Medicaid population were cut severely.  And yet, these people just did not go away.  So the state gave a large chunk of money to the rural health departments, not the four large cities---Memphis, Nashville, Knoxville, and Chattanooga who offer this already---to develop larger primary care operations.  Of course the health departments say it wasn't enough, so they went to their county governments as well for help.  But I maintained early on that one of these exam tables in their new rooms needed to be adjustable.  But with all my other duties, I did not push the point at the state level like I should have early enough.  I understand from speaking with one of the directors that the state sent them a list of vendors from which to order exam tables.  But none were adjustable.  Needless to say I was not happy.  I know we could make this an ADA case, but education is more of what my executive director wishes me to do first.  I have discussed this issue with others in the disability policy advocacy community in Nashville, and they are willing to work with me on this.  I sent your alert out to others in Tennessee to send you their stories, requesting that they also send me their stories to better make our case with the powers that be at the state.  Doing our bit at physician's conventions would be easier as well if we had some stories.  But I don't know as if people will follow through to also send me the story they send you.    If anyone does do this, could you share them with me, so we can work on this at our state level as well?  I understand if you cannot, however. This is my story for you.  I have a rare, progressive neurological condition: olivo ponto cerebellar atrophy.  It affects among other things my walking and balance.  So I use either two canes or a rolling walker to get around.  When I use my canes, doing steps without handrails is out of the question.  Getting up on exam tables is also out of the question.  I can usually put my foot on the step up, but sometimes that is a real stretch.  I have never had a nurse say they cannot help me, but I usually do have to tell them that I need their assistance.  Keeping these flimsy paper gowns on they give me is rarely possible in the process.  Turning around on this little step to sit down on the table is really frightening, and I hold on to the nurses' necks for dear life.  Once somehow the doctor forgot about me, after he said, "ok, get undressed and I will be right back in."  A good half hour transpired before the nurse popped in to realize that he had not seen me.  I could not get off the table to let them know I was still waiting for them.  My purse was on the floor, so I could not write a shopping list, or read, or do anything valuable with that time except look at the patterns on the wooden door.  Thankfully, he did not break for lunch before the nurse checked in on me---simply because she wanted to put another patient in that room.  They were duly apologetic, and I laughed that giving me a pap smear was probably not the highlight of his day.  Still I would have liked to have gotten off the table to ask what was taking them so long, as I had a meeting to go to after the exam, which I dearly wanted to get to on time and do some errands before getting there.  The errands waited to another time.    Well, good luck Elizabeth collecting your stories.  I hope mine helps, even though I don't have to use a wheelchair.  I am sure you will get your fair share because everyone I speak with here who uses a wheelchair has a story.  Now on to reading the ILRU webcast on this subject.  Share stories with me as you are able.  Thanks for doing this, This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:34 PM

1-19-07 Hi Elizabeth Leef, I am asking for your help and to care about important things to this matter. Access to Medical Equipment see lLRUs webcast  with June Kailes on 4 January 2007. http://www.ilru.org/html/training/webcasts/archive/index.html When I go to get x-ray, mammogram, and other things at the hospital there is nothing to me me get on the table and there should be a lifter to help and lifters for homes to for wheelchair bound and bed ridden people or over weight people. Only a few people can get it at home and that is only bed ridden and over weight people who can and it should be for all disables who are wheelchair bound, with no balance control, bedridden and all hospitals. But it's not this way and to get the on table it 2 to 3, or sometimes more people to help me on the table. They try to do or lucky to get the help to do it. Most of the time people will not do because they no want to hurt their backs or anything else. For you and I together should understand it. So a lot of times people will not get it or if they are in the wheelchair it does not show what it really going on with the person and it will show up better on people when it to late to do anything about it and treatment to death and it should not be this way but it is and is happening to this day. For other medical equipment's to have at home not all will be paid by medical and the Insurance plans and it should be for all medical and Insurance plans and for a lot of people have to change so they lose out on other things and have to pay out of your pocket or both. So we can have it and a lot of times people who are diabetes, have asthma, cancer, HIV, high blood pressure and other diseases or injuries can not get all the things they need to help them live or at home and that because they no care or want to do or fight harder to get it. This is about me but other disables need so must more than I do. Please can listen to me. The lifters for disable people if people with lifters in the home and hospitals can have one it would be so much better because when CAREGIVER IHSS PROVIDER, NURSE, OR TRAINEE IS AROUND THEY NEED HELP BUT WHEN NOT ENOUGH HELP OR GONE HOME AND THEN THE CLIENT NEEDS HELP OR TO GO THE BATHROOM IT WILL HELP MORE BETTER and for the caregiver IHSS providers or nurses and etc backs would not hurt them so much. When the client end up hurting the providers back to where he/she no can work no more, for the client will lose out on so many things that is needed for the client is a person. I lost my provider because of the same reason and because she was in a car accident in her Van because the tire blow. So now me is looking for a new provider and it is hard to find on. Plus me is deaf and disable. When my rheumatoid arthritis hurts my body so bad and when the weather is changing my wrist hurts so bad and hard to get my body to work to go to the bathroom and I wet the bed sometimes because of it. When I need to take shower or for steam because of asthma it help more after the machine and no can do without no provider here and only get 8 hours a day. Most of the medical equipment is there but the make it for over weight people or bedridden only and it should be there to help consumer and provider etc.. Plus we are losing all medical benefits due to people changing the budget on top of all that. But now I have to pay for some of my medicines because it is over medicines and when I get a cold it turns into a sinusitis infection with sore throat, ear infection, with a cough and turn into pneumonia all the time and with other people colds, my body can't fight it and all of Fall to Winder long all the time no broke only lucky in summer time a little but then I am dealing with asthma and allergies to everything in/out doors. It is not easy for me and sometimes the doctors is lucky to get the right antibiotic to work. But then I would get a cold again and the last antibiotic that work is not working right for my body and my asthma/allergy specialist sometimes can't find the right one. My body changes on him all the time and some medicines I no can get because medical no pay for it due to high of price or I'm allergic to it. Where I no cam come up with the money.  Because I only on SSI income.  Now this year so many disabled people have lost out on so many things. Now nobody can buy false teeth for them to eat food.Know one can the medicines they had before because Medical changed, no more medicare so their medicines, medical equipment, nobody can get asthma machine, no more face masks for my asthma machine because medi-cal stopped it.  So on my shots they are not paying for it me is worried about it, for some shots I cannot get and have to pay two to four for a lower dose of medication to get it, and some of the other medicines I cannot have because I'm allergic to it. My high pressure stays high all the time now and talking medicine to try to keep it down it no work no more but to take it. This is not good for my body and is now making bladder problems and other problems in my body, some of us disabled people have died because of this and the change on the bodies have made it happens because the cant get the right medicine now only can get what medi-cal will let us have I no want to die because it costs so much for me to have it and that's not fair. With the medicines and medi-cal equipment should not be taken away because someone wants things different or because they think they know  better and because of this.  I just lost a good friend in the hospital and some people are in the hospital because of medical changes and things. Because of it and because of all the medi-cal stuff their doing is not fair. But it happens because people don't care. But I do care, that's why I'm emailing because I do care.Please care to fix things back or make it better. The medical equipment is there to help us. Why not let us have it to make things easier for other to help us and hurt them for wanting to help us, to help us as the client, and not hurt them ( caretaker, IHSS provider,nurses and trainee) for wanting to help and caring to do so. Because of things I need sometimes I no can have the help I need, there are no caretakers to help because they are sick too. I lose out and be stuck in bed, plus on top no can get to the phone to call for help. I am deaf all the way now, grew up on hearing aids and an implant, no work no more, due to ear disease and cut doctors had to cut things out of ear, and nothings inside. Me is deaf and disabled and live alone now and have beg to get someone to come and stay the night. Not all the time I get it and when power is out I have no phone.  TDD/TTY works only on phone line and SMUD power line. To much of a high phone or sidekick, and they no do paymentsa ND then more money to get it to work at AT&T or SBC it costs more to get it to work and can have a different plan and have TTY's/TDD with cell phone, but without different plans and cost more. Plus when you get out on the street and away from the phone, its dangerous me because of asthma attacks no help  and lucky if a person will no what is going on to help or if care to do so why is so important to take things away from us when it was made to help us, and now lucky if can get the money to buy it. Because medi-cal no can help us nowbecause people who stopped it no care about other people but they are in office and say they can make it so the poor middle class, and disable no can afford to buy it to get it or help the people who need it I pray you will not be one of these people and will stop them and make them do things so we can have it to help us the medical equipment will make our lives better so we can live in this world. With me I care to show it Some will not I guess they want us to die or die trying to get the things we need just to be here on earth. God no asked you to do this, he says to help us, just Jesus tried. But we no have Jesus and people killed him and now we lucky if he can help us. Please help God and Jesus to help us poor, middle class, and disabled to make things better the way it should be, not the way other people want it to be. Do God and Jesus and see how proud he will be of you, I know I will be, I pray you are my hope and future to make things happen and me see it done. Thank you for reading this just to listen This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:34 PM

1-20-07 Dear Elizabeth, Thank you for your support of the "Promoting Wellness for Individuals with Disabilities Act of 2007". Please share our story with Sen. Harkin. My husband is an incomplete C6 quadriplegic. He has great difficulty finding facilities which have scales accessible to a power wheelchair. We live in Cincinnati & receive primary medical care from Alliance Primary Care, part of the Health Alliance of Greater Cincinnati. They have always had a scale for "typical" patients, but the wheelchair scale has remained "broken" in the basement for years. I have asked about this on numerous occaions & have always been told that the medical director doesn't want to pay to have it repaired. When my husband & I went to see the doctor on Tuesday, January 13, 2006 for routine appointments we discovered that they had a brand new scale for the "typical" patients (which I used). I asked if they had also gotten a new wheelchair scale. The medical assistant rolled her eyes. I brought the subject up with our doctor who is, incidentally, the medical director of the practice. He got defensive & said that such an expenditure would have to come out of his own pocket. He said, "Do you know how much those scales cost?" I replied, "Yes, about $3,000."  He implied that that was too much money to spend, even though his practice specializes in treating adults with pediatric pathology; e.g., spina bifida, cerebral palsy, mental retardation & other developmental disabilities. I asked him how many of his patients use wheelchairs, & he said, "I don't know." End of conversation. I believe that if it is important to know the weight of "typical" patients, then it is also important to know the weight of those who use wheelchairs. It is actually probably more important to know the weight of those persons because many have bodies which are architecturally atypical, & it is necessary to know a correct weight in order to acurately dose many drugs. I look forward to hearing of the progress of Sen. Harkin's bill. Thank you. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:35 PM

1-22-07 Lee and Elizabeth, I'm so happy that Senator Harkin will be introducing the Promoting Wellness for Individuals with Disabilities Act.  As a program consultant with a health promotion training program called Living Well Iowa, I see firsthand the many benefits which this Act will provide. Living Well Iowa provides us the exciting opportunity to educate students in the University of Iowa's College of Medicine and Physician Assistant training programs.  This training is strengthened by the first-hand experiences of our trainers, all of whom either have a disability or have a family member with a disability.  Carol McClure, one of our community trainers who experiences a physical disability, has given me permission to share the following story, written in her own words.  It is a testament to the value of legislation which Sen. Harkin is introducing: I been meaning in the few  weeks to write you this note to tell you a cool story regarding the 2005 training we did in Iowa City for the PA's (physician assistanttraineees). My main physician was Dr. Barbara Barnett out of Mercy Care Marion and she recently left her practice. The woman that took her place is now one of my doctors, her name is Jessica Quinn. The first day I saw her, she said to me "I know you from somewhere, didn't you come do a PA Training presentation on disabilities with a few others last year (meaning 2005 because I saw this woman for the first time the end of December 2006). I just had to giggle and told her yes. She is now one of my doctors (she said she had just graduated and took over this position for my other doctor) and I like her lots. The first thing she asked me was "How do we help you to get you up on the table?" giggles. It is cool to know that the training made a difference in one person's education and their career in the medical field. Jessica said she liked the training and did learn from it. I just thought you might enjoy hearing about that one . An additional tidbit that just happened today January 11th, 2007 regarding the PA program and Jessica Quinn. My last appointment I spoke of where Jessica asked me how to get me up on the table, it ended up being that my appointment got changed from the "womanly" exam on the table to my foot (which is infected at this time with ulcer) was treated instead that day. My appointment for the womanly exam was scheduled for today and I went in and saw Jessica Quinn again. She had asked one of the other doctors to let me use one of their rooms because the table was really low to the ground for me to get onto. Jessica was very attentive as to what I wanted and needed her to help me with today and I think that is also an outcome of what she learned from the PA Training.  It is very exciting seeing the end result of an awesome training program for the PA's. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:38 PM

1-23-07 I have Juvenile Rheumatoid Arthritis.  Tears of sadness and joy filled my eyes learning of Senator Tom Harkin legislation - Promoting Wellness for Individuals with Disabilities Act of 2007. When it comes to my J.R.A. there were no struggles finding an excellent Rheumatologist in Washington,D.C. - Doctor David Borenstein and his staff dispense care and attention. However, for two years I went without a Mammogram because George Washington University Hospital didn't have a lift chair. I was told a new lift chair would be ordered, and that the old lift chair was being used in the new addition across the street. So I went over to Sibley Center for Breast Health and encountered long hours waiting in the cold room for medical assistance from staff to lift me from my wheelchair up to the x-ray machine. The examining rooms at George Washington are close and tight. I can barely get my wheelchair inside the door. There are no lift chairs nor tables and sometimes little staff.  Doctor E-Bayoumi, my doctor at G.W., has had to assist me on countless visits with my dressing and transferring me into my wheelchair by herself. It's alright, having a disability; it's not alright being embarrassed by your disability. I find dignity in Dr. J. El-Bayoumi's words. Having a disability shouldn't get in the way of medical benefits for all citizens. Time and time again people with disabilities are denied the basic medical treatments non-disabled people receive. Over the years many friends of mine have died for lack of treatments, and no one educated them about their rights. This is outrageous here in America. When I was growing up, health workers, teachers, clergymen would say, "We know what Katie can't do. Lets figure out what she can do." Promoting Wellness for Individuals With Disabilities Act of 2007 gives a population that is often underserved and overlooked in society the tools for medical accessibility. Much credit must go to Senator Tom Harkin. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By heinsohn On 02-14-07 02:39 PM

I just saw your posting on the LILA website, too late for your March 21 meeting. My son Kim Mathenge is 24 and in a wheelchair due to cerebral palsy. He has not been weighed since he got too big for me to hold him. We have Health-Net insurance through my employer (UCLA) and go to Les Kelley Clinic in Santa Monica. It seems that it should be possible for such a sizable organization to provide a scale that can be used by people in wheelchairs, so they don't have to guess at the dosage for meds. I have mentioned this to their nurses or doctors several times and get no response." They keep asking him if he can stand on the scale. When he says no, they say "OK," and that's the end of that. This message was sent to Elizabeth Leef [elizabeth@ncil.org] at the National Council for Independent Living and forwarded to Dawn Heinsohn [Heinsohn@ilru.org] at ILRU for posting on this discussion page.  Personal information has been removed. If you have any questions please contact either of them.

By Guest On 02-21-07 04:53 PM

I don't  know if this really meets the needs of your request, but I think it is definitely significant. There is a greater need for training of people giving medical care. Last year I slipped on the ice and had a concussion and required some stitches because the top of my head hit the ground first. The people in the local hospital were trying to get me to tell them what medication I use, but I could not think straight. It did occur to me to show them my medic alert necklace, but they did not know how to contact medic alert although the toll free number is on the back and did not know how to identify me to them although the necklace has an id number. Medic alert had my medical history including dosages of medications, 3 previous brain surgeries, high blood pressure and glaucoma. Even after getting the information from medic alert which included my wife's and sister's phone numbers neither of them was called by the hospital. My wife could have been there in 10 minutes. They could also have looked in my wallet and seen that I work out of the US Forest Service office 2 blocks from the hospital and they could have spoken with coworkers. If I were to go in with a concussion and they wanted to do an MRI in my case it can be fatal because I have a Vagus Nerve Stimulator (VNS). They should know that. I spoke with an EMT recently and they had never heard of a VNS. Even though this is a town of about 15,000 people I know there is at least one other resident with a VNS and another will get one soon.

By Guest On 04-06-07 12:47 AM

Aloha, I am a student at the University of Hawaii-Manoa in the rehabilitation counseling field. I also work at Child and Family services as a counselor for children. I am writing because of the lack of resources and funding there is for those with disabilities. Even though some areas are being addressed such as making things more accessible for many, it is still lacking in so many areas. According to ADA law this should not only be a social and moral responsibility, but a legal one as well. This is not the case with my experiences and with some that I work with. All too often, employers and schools do not adhere to their responsibilities and also medical needs are not met. I also am a Deaf person and struggle with trying to find help in that area of employment and schooling. I do work with hearing aids and devices, but my deafness is quite profound and I often need to use interpreters. Because I am raising a family, my funds are quite limited. The hearing aids are very expensive (approx. $9000.) and there is little help with that let alone the constant maintenance that needs to be done on the hearing aids. I also am feeling exclusions at work because of my disability and this makes a job, that I love, difficult to bear without the support. I am advocating the fact that there needs to be more done and more funding available for ALL people with disabilities. Whether it be medical, accessibility, or devices to make life easier to be able to work/and or go to school. There is also a need for those with more severe disabilities to have access to programs, medical, insurance, and facilities that can help them in their journey of life. Thank you for listening, Roxanna

By Guest On 06-05-07 11:19 AM

My son has paralyzed bowels and can not release his stool at all. He has had three severe bowel impactions and the third made it impossible for him to do any bowel release on his own. He had been on a bowel training program but when he went into a private institution, paid for by the state educational agency and through the school district, I was told the program was continuing but they lied. I found out that the placement through the school district only required that my son be educated and it didn't require that his medical needs be addressed. When he had another impaction I learned they had lied. I had called the GI doctor repeately because of my son's bowel leakage and asked if the institution was bringing him in for the appointments. All I got for a couple of years was the nurse on the phone slamming the phone down and refusing to answer. Later I learned the nurse thought I was refusing to take him to his appointments as he never came in when an appointment was made. He was too violent then for me to dare handling him in the car to an appointment. And, he was in the institution because of his violent episodes. Shortly after he aged out, I learned about a device called the PIE, pulsated irrigated evacuation system, that would pulsate and do a thorough cleaning of the GI tract. His private insurance initially paid for the device and he was in a medicaid waiver program that took care of the nurses to administer the bowel relief treatment. However, when my husband retired and Medicare kicked in then when my son needed a replacement assistive piece of equipment, called PIE because the old one had worn out, then Medicare refused to pay for it. I couldn't ask the old insurance because it was secondary and so we had to try and get Medicare to pay. The medical supplier spent two years fighting the battle and WE WON finally when at the end the administrative law judge looked at the case. However, still whenever we need to order disposables then the suppliers have to do appeals and they do manage to get the supplies funded. My son needs this device in order to live. He has autism and a colostomy would be very risky. My son, by the way, is now age 33. We shouldn't have had to go through such a long appeals process for essential medical equipment? Martha TEXAS

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