February, 2014 First Quarter Newsletter of the Joseph Groh Foundation
The Foundation in 2014
Working off the strategic plan developed by the foundation board in early 2013, the board has a number developmental opportunities we are pursuing this coming year. In coming days and weeks you will be hearing more about them, they include:
Global Initiatives and the Disabled
Most of us are disabled at some point during our lives, the magnitude might range from having a broken leg to the lack of access that comes with aging. Consider however these mind-boggling statistics, courtesy of the Department of economic and social affairs of the United Nations.
In 2013 Congress fell 5 votes short of passing this treaty, and Senate Foreign Relations Committee Chairman Robert Menendez plans to try again this year. Like everything else in Congress, support for this treaty is split among party lines. Supporters say ratification would not impose any legal requirements on the United States, but would press the rest of the world to get up to par with the Americans With Disabilities Act. Opponents say the treaty would empower UN bureaucrats to influence a broad swath of US laws.
This article is not meant to make argument for either side, because in the end it is not about politics but about people. No one in the US today would likely argue that ADA was a bad thing, so a global initiative in the same vein is noble and worthwhile. I only hope common sense prevails, and that the world continues to open access to everyone so as to benefit from what disabled individuals have to offer.
If you wish to read the complete text of the convention on the rights of persons with disabilities, go to the foundation website/links/UN And Global Resources.
In last fall's newsletter we told you about Rick Hansen in the "People You Should Know" column. In that column we referenced the tool that Rick's foundation has developed which allows users to submit and obtain reviews from a mobility, site, or hearing perspective on the accessibility of buildings and public services in communities around the world. You can find a link to this tool under the newly created UN and Global Resources button on our links page.
National Career Development Association
We were made aware of this new website by a high school student in North Carolina as part of a research topic on vocational rehabilitation. We appreciate the fact that people find our website to be a great focal point of information. The National Career Development Association was founded in its original form in 1913, and is a recognized leader in developing standards for the career development profession, for the provision of career counseling programs and services for the evaluation of career information materials. This link can be found on our website under National Resources.
Competitive Bidding in Medicare
Everyone knows that Medicare is is in need of financial overhaul and that the present Congress is unlikely to address it, particularly in an election year. Recently however the concept of competitive bidding has started being used, but to inconclusive results at present.
For almost all of its services Medicare uses an administrative pricing approach in which the price of any service Medicare covers is calculated and set by the government. Competitive bidding however allows healthcare providers to bid for contracts for goods or services. All of this sounds like it makes a lot of common sense, especially for those in the business world who live under this concept every day. Recent healthcare proposals from both Democrats and Republicans have sought to expand the use of competitive bidding in Medicare, ranging from small expansions of services to large overhauls of the entire system. Those in favor of competitive bidding argue that increased competition will lower health care costs and shave billions of dollars off the federal deficit. Critics argue that the potential savings under such plans are unrealistic and would lead to reduced access for Medicare beneficiaries. So which is it?
Both, it would appear. In the first year of trial use with competitive bidding for durable medical equipment, (wheelchairs etc.) The Government accountability office determined that competition saved Medicare $7.5 million that year and beneficiaries $1.9 million – without significantly affecting beneficiary access. The GAO also warned however that concerns of competitive bidding may prompt suppliers to cut their costs by offering lower quality items and curtailing services. As the program has been expanded, suppliers of durable medical equipment are confirming issues of profitability, lower quality and service curtailment. In the Riverside-San Bernardino-Ontario, California area, first year results with competitive bidding have reduced the number of service providers from 375 to 37. Some consumers are now traveling long distances for service. While overall costs to Medicare for durable medical equipment in this area dropped 5.6% during the year, a good number of the small businesses losing contracts ended up going out of business. It is beginning to look like the competitive bidding process has reduced cost for Medicare, but at the expense of consumer choice, access and quality. So what is the answer?
The American Association for home care and others have proposed an alternative, urging Congress to enact the market pricing program. This is a reform of the pricing system that would establish fair market pricing for several categories of equipment through an auction process. Using smaller geographic areas, the prices would be more in line with actual costs in each region and allow many more vendors to participate in the program.
There is no doubt drastic things need to happen with Medicare, hopefully however government bureaucrats will be able to distinguish between the marginal utility of providing a motorized scooter for an elderly patient in the middle of New York City to that of a custom power chair for a high-level quadriplegic in rural North Dakota – instead of the one-size-fits-all solution that is usually applied. Time will tell.
People You Should Know
Paul Smith, typewriter artist. Paul was born with severe spastic cerebral palsy in 1921. Doctors did not believe he would live very long, as this was a time when people with cerebral palsy received little support or attention from the community. He was not taught to read or write and most physicians recommended that children with this form of cerebral palsy be institutionalized. The loss of fine motor controls of his face and hands made it impossible for him to do almost anything by himself, but he persevered. It took him 16 years to learn to speak, and 32 years to learn to walk.
When Paul was 11, a neighbor discarded an old typewriter and Paul began toying with it. By the time he was 15 Paul discovered a technique for using the typewriter to create pictures. He was able to use one hand to steady the other enough press the desired key. His creations became an outlet for child to find new ways to express himself, since being nonverbal he could not easily convey his feelings to others. The subject of Paul's focus included pictures of animals, nature scenes, spiritual symbols and outdoor scenes. They also showcased his childhood fascination with trains. Amazingly, Paul's images were created by only using 11 or so symbol keys, which were accessible along the top row of the typewriter keyboard. It's pretty remarkable when you consider that the type of manual typewriter that he was using required the ribbon to be positioned, the roller to be adjusted and the paper to be secured. Later on, the addition of color allowed Paul the flexibility to layer in color, and he would press his thumb on the ribbon to create shade.
Working a couple of hours a day on his art, it would take Paul anywhere from two weeks to three months to complete one piece of art. Surprisingly, Paul did not seek to sell his works, rather he gave them away. For Paul, creating art was a leisurely pursuit and a form of expression. Due to advanced age and cataracts, Paul stopped creating pictures in 2004 and he passed away in June, 2007. In all, it is estimated he created over 400 pieces of art during his lifetime. That work remains an inspiration for all of us about what is possible.
For more on Paul, his work and his amazing life, this YouTube video is a must see. Thanks to cerebral palsy.org for this story and images.
A Day in the Life
This feature is a sometimes humorous, sometimes offbeat, and sometimes irreverent look at life as seen through the eyes of a severely disabled person. Management takes no responsibility for these ramblings.
Your First Set of Wheels
Do you remember your first car? Of course you do. You had been dreaming about it ever since you got your driver's license. In all likelihood it was an older machine whose best days were behind it, but to you it represented nothing short of freedom and independence. You would lavish great attention on freedom and independence, constantly tinkering with it and making sure it had a good wax job. Your friends might have razzed you, but that didn't bother you in the least. Remembering it nostalgically, you've probably thought "they don't build them like that anymore."
I had similar feelings when I first received my power wheelchair. For the first two months after my accident, the only "mobility" I had was when they moved my bed from one room to another. The first time they let me sit up in a wheelchair, it was for 45 min. and I asked them to park me at the end of the hallway in front of a window where I could see the buildings of downtown Dallas. The warm sunlight had me feeling very snug, and the session ended all too soon. Gradually I progressed to a manual wheelchair, which was a definitive step up – as long as there was someone willing to push you! As sometimes will happen in hospitals, your charge would take you down the hall only to get interrupted. Off they would scurry to take care of some immediate crisis, telling you they would "be right back." The definition of that timeframe is in the mind of the beholder! That is when I began to dream of a power wheelchair – one that would allow me the freedom and independence to go anywhere I wanted.
Eight months later my dream came true. The chair was truly remarkable once I learned how to control it without maiming someone or destroying something. Like a new car, it had its shakedown issues. Three weeks outside of the one-year warranty a controller and actuator went out on it, and the cost to replace both was $3200. After much wrangling with a local supplier and the manufacturer, the most expensive of the two components was handled under warranty. One other time I had just gotten in the chair as we were headed to an ACCA dinner. As soon as the power was turned on, the chair begin tilting backward, then forward unrelentingly. Not even turning it off stopped the problem. I forget what we did to correct the problem, but at least it was better than the time it completely died just short of entering a Macy's department store in December, allowing for some very interesting people watching – and only 5 feet from warmth!
I am now going on year six years and four pressure sores with "my ride", but they tell me I am getting to the end of the line. Parts for this particular chair are no longer available from the manufacturer, part of the reason may be that they are in hot water with the FDA over quality control issues. None of that wants to matter with me however. Like your first car, you're reluctant to give it up because of all the memories you have associated with it – a family trip when it was 1, my daughter's innumerable basketball games, graduation dinners, our children's weddings, special anniversary dinners and on it goes. They tell me the new chair will make pressure sores a thing of the past (which I am not banking on) and that it will help prevent further scoliosis. (Which I think means to roll up in a fetal position and mourn the loss of your chair) They also tell me that unlike the model T Ford, I can have it in colors other than black. Well that all sounds fine and well, but I am a bit concerned about what's coming down the track given the changes that are taking place with Medicare and durable medical equipment. At least now you'll know what happened if the next time you see me I am in some fire engine red/sky-blue/fiery orange chair. Meanwhile, to my trusted steed I say, "thanks for the memories."