We need to talk. We need to have a serious discussion about health: more specifically, health care of the preventive kind. This is an important conversation, as it is one that affects us and our loved ones.

It is a basic human instinct to put off until tomorrow what we find distasteful or difficult today. Some of us are so good at it that we can put off or postpone for years those things that we do not like. I can attest to that, through personal experience, as I am my own worst example.

In an earlier blog I discussed the years when I was invincible, prior to my disabling spinal cord injury in 1988. Healthy living, physical fitness and a lot of luck meant that I only saw doctors a few times to stitch something up or make sure I had done no permanent damage with a sports-related concussion. During my 23-year railroad career, the only physical examination I had was my preemployment physical.

Even after my spinal cord injury, it has been far easier to deal only with the most pressing physical issues instead of getting overall checkups. Since my doctor visits have usually been scheduled to deal with specific ailments, the only additional measurements taken that might indicate some other types of problems were my blood pressure, temperature and pulse. Those simple tests did not reveal any significant problems, so I went about my life without changing habits or worrying about some of the other minor indications that things might not be quite right when it came to my health.

It is pretty easy to ignore the little things even though you fear what they might be indicators of regarding your health. The truth is that there is nothing to be gained by ignoring them. Can frequent, or even periodic, headaches or dizziness be an indicator of a brain tumor, aneurysm or something else that might be just as sinister? Could frequent awakening during the night, or still being exhausted after getting up in the morning, be a sign of sleep apnea?

How about that continuing series of urinary tract infections that have been treated with every type of antibiotic available to modern medicine? Could they be a harbinger of bladder cancer or perhaps renal failure in the future? What happens when the germs in our system become resistant to even the most powerful antibiotics?

There are even more things that should concern us and prompt us to have a conversation with a medical professional. That periodic tingling or numbness of our lips or one side of our face might be a sign of a blood vessel becoming blocked, or an indicator of high blood pressure that might lead to a stroke.

The rare but frightening spots of blood that have shown up in the toilet periodically could be a symptom of five or six different maladies of minor to major concern. All require a look at our innards by someone who specializes in whatever can go wrong with such private parts. Unusual changes in spasticity, flexibility or our capabilities for self-care might merit a discussion with a physiatrist, neurologist or others who specialize in our particular type of disability.

Changes in hearing or vision, especially if they occur relatively quickly, are a sign that some medical attention is needed. A skilled optometrist or ophthalmologist can detect early onset of glaucoma or cataracts, and might be able to spot indicators of more serious issues taking place in other parts of the body.

Some of those items get more common as we age, or if we have close relatives who have had certain diseases or complications related to the above. When you add in the additional indicators that might be unique to spinal cord injury or disease, or similar paralyzing disabilities, the signals being sent by our bodies can become even more complex.

Several of the aforementioned items have been a part of my life, and seem to be occurring more frequently recently. I found that the menu of medications that I was ingesting each day, when I included those that were recommended by well-meaning friends and could be purchased over-the-counter, had risen to over 25 types of pills. It was only recently that my primary care physician was able to start reducing the list through continuing discussions with me concerning how I was feeling, and coupling those discussions with blood tests to see how those changes were affecting me.

Yes, it’s human nature to procrastinate, especially if we can convince ourselves that some signal our body is sending doesn’t warrant review by a doctor. I don’t know about you, but I think it’s better to heed those signals than to try to explain to my family why I continued to ignore such warning signs.

© 2012 Michael Collins

Have you experienced problems during diagnosis or treatment at your favorite doctor's office, medical clinic or hospital? Were any of the problems you encountered caused by the inaccessible nature of the medical diagnosis or treatment equipment? There is hope on the horizon, and you can become a part of the solution.

Some of you who read my blog regularly may remember that it has been about 22 years since I was actually weighed, because none of my providers had a scale that could accommodate my large and immobile body. I was recently hospitalized for a short time, and the bed that was in use in my hospital room actually had a feature that allowed them to weigh me while still in bed. It was a new model of hospital bed that not only included a scale but actually had a built-in air mattress that could provide alternating pressure to prevent pressure sores.

Unfortunately the news about my weight was not what I had hoped to hear. I have apparently been gaining weight continuously since my spinal cord injury in 1988, and might now qualify to be listed on the same chart as some smaller sumo wrestlers.  My snack drawer will not be replenished when it gets cleaned out, and I am cutting back to only two meals per day. That should be plenty when you consider that I have limited opportunities to exercise.

The United States Access Board recently published proposed ADA standards for diagnostic medical equiupment on February 9, 2012  and it is now time to finalize them.. The next step is the convening of a panel of stakeholders of all types to determine what types of equipment are actually accessible, and where improvements are still due.  That is where you have an opportunity to get involved and make a positive difference in the application of the new standards. 

I am pasting the actual e-mail announcement just received from the Access Board in case you can get involved. Please note that the notice states that no one will be reimbursed for expenses. However,  if you do not live in the immediate vicinity of Washington, DC, I would recommend that you call the Access Board directly to see if anything is possible if you really want to get involved. It may not  matter, but if this type of assignment would create a financial hardship for you and you have limited income you should at least make the request.

 Here is that announcement:
"Applications for Medical Diagnostic Equipment Advisory Committee Due April 27
The Access Board is organizing an advisory committee to advance its development of new standards for medical diagnostic equipment and seeks applications from interested parties to serve as committee members. This committee will provide assistance to the Board in finalizing standards for diagnostic equipment it released for public comment in February. Medical device manufacturers, health care providers, disability groups, standard-setting organizations, and other stakeholders are encouraged to apply. Committee membership is voluntary, and members will not be paid or reimbursed for their services.

The deadline for applications is April 27. A notice published by the Board provides further details, including application instructions. For further information, contact Rex Pace at pace@access-board.gov, (202) 272-0023 (v), or (202) 272-0052 (TTY)."

Good luck, and thanks in advance for stepping up to the plate when such opportunities arise.

©  2012 Michael Collins

Doom and Gloom; Disgusted; Fed up; Beat up, or Beat down? All of these terms could describe various moods I have expressed recently about attacks on disability civil rights and our ability to live independently. Please accept my apologies if my recent blogs on the elimination of the CLASS program and the current push to keep the Department of Justice from enforcing some Americans with Disabilities Act (ADA) regulations have depressed or disappointed you. I don’t think you’re alone.

Congress apparently has no qualms about eliminating rights granted to us with passage of the ADA in 1990. As I stated in my last blog, both the House and Senate are considering legislation that would prevent the Attorney General from administering or enforcing ADA regulations that require the permanent installation of pool lifts. This is an unprecedented action, as it denies the civil rights of an entire class of protected individuals: people with disabilities.

Despite the damage being done by the aforementioned actions, there are a few bright spots that are also worth mentioning. We do have allies in Congress and throughout government who continue to serve as our champions when our rights are threatened. Just last week, Senator DeMint tried to force a quick vote on the Senate bill (S. 2191) that would prevent the Attorney General from enforcing the ADA’s requirements regarding pool lifts. His move was met by an immediate objection from Senator Tom Harkin, Chair of the Senate Health Education Labor and Pensions Committee, who has been a champion of the ADA since it was first proposed. That bill is still alive, but advocates have rallied to phone and write members of Congress to let them know that these bills should not pass.

We can still have an impact on the enforcement of the pool lift regulations, as the Department of Justice (DOJ) has voluntarily suspended enforcement until May 21, 2012 and is asking the public to comment on that suspension (and a possible 180 day extension of it) by responding online to the Notice of Proposed Rulemaking
at regulations.gov. The initial deadline for those comments is April 4, 2012! If full access to recreation is important to you, I would recommend that you click on the above link and leave your comments as soon as possible.

Another bright spot is the work that is being done by the US Access Board to follow up on initial ADA regulations in several areas that could benefit from a more refined definition. Working in tandem with the DOJ, they solicited input on the height and characteristics of hotel beds, and have been working for several years on reviewing the dimensions of medical equipment and establishing standards for accessible medical devices of all types. The Board has scheduled two hearings on diagnostic medical equipment, and will be taking public testimony on their recommendations through June 8, 2012. The Centers for Medicare and Medicaid Services (CMS) has also joined with the DOJ in publishing guidance for the medical profession about how to provide care for people with mobility disabilities.

DOJ and the Access Board continue to refine the ADA Standards for Accessible Design in order to expedite compliance through better understanding of the regulations by business owners and government agencies who need to comply with them. New ADA regulations which have taken effect during the past two years provide additional guidance on such items as service animals, the use of Segways as mobility devices, recreational facilities of all types, timeshare accessibility, ticketing and lodging reservations. The Access Board recently concluded two hearings on the Telecommunications Act Accessibility Guidelines, and additional action will be taken once the hearing testimony has been processed.

While it appears that not much improvement has occurred in the last 20 years, expanded employment opportunities for people with disabilities are actually bright spots. Public testimony is being evaluated on a new rule by the Department of Labor that would require federal contractors to increase their percentage of employees with disabilities to 7% of their total workforce. That change coincides with an effort led by the Office of Personnel Management and DOL to increase federal agency disability employment percentages.

The sun is really shining on three cities that have recently improved access to accessible taxi cabs because of solid work by disability advocates. Congratulations are due to those who fought for those changes in New York City, Washington, DC and Chicago. Thanks to their efforts, and if the Supreme Court will just leave the Affordable Care Act
intact, I may have a use for my sunglasses after all.

© 2012 Michael Collins

Bulletin: Showing a complete lack of CLASS, elected representatives in Congress proudly proclaimed that they were voting to repeal the CLASS (Community Living Assistance Services and Supports) provisions in the Affordable Care Act. Read More

It’s the start of another year, but some things remain unchanged. At this moment, thousands of my colleagues are experiencing the effects of a glut of health conditions that can result in premature death and the onset of diseases most people will never face.  We wait, impatiently, for research scientists to discover the elusive cure for paralysis. That cure is unlikely to help many of us who are wheeling around today if we are so out of shape and unhealthy that we are seen as not able to benefit from whatever cure protocols are discovered. Read More

Regifting is an art. In some families the word is taboo, but with seven siblings it was a common practice in our family as I grew up. Passing the clothes and toys we had outgrown down to younger brothers and sisters did not qualify as regifting. Rewrapping a new or slightly used Christmas or birthday gift did qualify, and was often the practice when we did not take the time to actually shop for that special someone in our family. Read More

Recounting my early years, it amazes me that my circle of friends survived to adulthood, especially absent major traumas. We didn’t consider strains, sprains, concussions and fractures to be major injuries, as we healed from those in time. We even jumped or dove off towering cliffs into murky lakes during our teen years, but none of us drowned or became paralyzed. Read More

It sometimes amazes me how easy it is to kick off a cascade of memories. One random thought leads to another, and soon they keep coming. It almost seems like they've been standing there, like dominoes, waiting for someone to knock the first one over. Read More

People who live with paralysis support a huge network of medical professionals and related suppliers. The costs associated with keeping us alive and healthy can easily exceed $2 million in a lifetime—even without medical complications. They tell me that the six months I spent in rehab after my injury cost my insurance company, and earned the hospital and those who treated me, over $500,000. With that in mind, you would think that we would get treated with more respect. Read More

Revelations can appear at surprising times, and in unexpected places. I'm sure that Newton's theory of gravitational pull seemed so simple at the time that he discovered it that perhaps he wondered why he hadn't thought of it before. A similar thing happened to me last week, and it brought into focus the reality of the world we live in today. Read More

by Michael Collins

The New Year! I really like the sound of that: rejuvenation; starting anew; forgetting the past; and getting a fresh start on life. We all want this year to be better than the last one, but the reality is that we’re also another year older. For me, the start of the new year forced me to take a serious look ahead to what is sure to be a challenging future for many of us.

Since I live independently, I know how important it is to be vigilant about my health and to do everything possible to conserve resources so financial situations won't force me to sell my house and move into a nursing home. Independent living is so important that the Supreme Court, in its 1999 Olmstead decision regarding the Americans with Disabilities Act, reaffirmed the requirement for states to administer services, programs, and activities "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." Being isolated in a nursing home or institution is not an “integrated setting,” and we all have good reason to do whatever is necessary to avoid that isolation.

My own family serves as an example of why the Olmstead decision is so important. Christmas Eve dinner was the first time that we had gathered together all members of four generations to enjoy the holiday. My father stays in a nearby nursing home, in the Alzheimer's ward, and we brought him to my house for dinner. While he didn't recognize everyone, he did have an enjoyable time and plenty of personal interactions throughout the night. The atmosphere was a stark contrast to mealtimes in the nursing home, where there is little effort made to encourage interaction between the residents and those who support them.

Most nursing home residents simply sit quietly and stare blankly unless they are being asked basic questions about what they would like to drink or if they would like to have their meat cut up. Their living space is no larger than an office cubicle, and roommates rarely speak to each other. Is it the lack of interaction that causes Dad’s Dementia to worsen, or is it the Dementia that is causing the lack of interaction? Living in close quarters, when combined with advancing age and weakened immune systems, can mean that deadly diseases such as pneumonia or influenza can be easily transmitted between the residents. It is not a quality living option, especially for younger people with disabilities who find themselves being given no other options. Dad’s situation makes it clear to me that we should all do whatever possible to try to stay independent throughout our lives.

In case you thought the government would continue to provide the support we need in community settings, it's time to evaluate the reality of that as well. Medicaid  is a federal program to provide healthcare for certain people who live on low incomes and have minimal assets. For many people with disabilities, this is the only option for health insurance. This federal program is administered by states, and states must pay a portion of the costs: that's where the problem lies.

Many states offer Personal Assistance Services in the home, which are known as Home and Community-Based Services. Unfortunately those are optional services under the Medicaid rules, and states have to pay a much larger share of the costs when such services are delivered in the community rather than in a nursing home or similar group setting. This becomes a huge factor when states are struggling with decreased revenues and trying to reduce costs wherever possible. Today many states are reducing the number of people eligible for home care, or simply reducing the payment rates for home care providers and others providing Medicaid services.

There was a glimmer of hope when the Affordable Care Act  was passed by Congress last year. Several provisions of that law benefit people with disabilities who seek services in the community. The law contains a long-term care insurance program which is voluntary but can be self-funded for later use. There is support for Medicaid enrollees who seek Home and Community-Based Services. The Money Follows the Person demonstration programs were extended, and the “donut hole” for prescription drug payment was eliminated. The ability of insurers to use pre-existing conditions to deny coverage as well as the limitation on costs of healthcare were eliminated. Prescription drug costs were reduced, and parents could maintain children on their insurance until age 26 under certain circumstances.

Just when it looked like things might get better for those who have been working so hard to maintain their health while living independently, some members of Congress have decided that their first task in this session will be to dismantle the Affordable Care Act. While the recent House vote to repeal the law will go nowhere, those who are against the law have pledged to pick it apart piece by piece through elimination of funding where possible.

My purpose in sharing this is not to spread gloom and doom. However, many of us depend on programs and supports that allow us to remain in the community rather than be isolated in an institutional setting. If you have not been paying attention to what goes on in the nation's capital, this would be a good time to start. You may even decide that it is worth your time to contact your representatives and let them know how important it is for you to be able to live independently throughout your life. I will, because that is my new year’s resolution.

© 2011 Michael Collins