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Life After Paralysis is a blog that represents a variety of paralysis community members. It is a place for open conversation about the issues and the interests of people living with paralysis, their family, friends, caregivers, and the professionals that serve them. Comments are welcome!
 
The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

2015: Our Challenges Continue


When I awoke on New Year's morning it felt a lot like it did the morning of the day before. My process for getting up, dressed and into my wheelchair took as long as usual, and the cold, cloudy weather cast a somber mood over the day. I felt more like the old bearded guy carrying a sickle than I did the diaper-clad kid in a top hat that usually accompanies him in illustrations of the New Year's holiday.

In a valiant effort to change the mood of the moment I shaved off my own beard, but even that drastic move didn't seem to have any impact. The reason for my melancholy mood was probably due partly to the way 2014 ended, with too many challenges on the plates of people with all types of disabilities.
 
The new members of Congress who were elected in the midterm elections of 2014 have promised a continuing stalemate when it comes to passing bills that the President might sign. They also promise to undo as many of the recent presidential executive orders as possible, and apparently relish the opportunity to force the President into vetoing bills that they themselves seem to acknowledge are unrealistic at best.
 
Okay, I know that that sounds like politics as usual, so why should the coming year appear any more challenging than the ones that came before? I suppose it is because the needs of the disability community will be set aside once again, in favor of the political arguing that we have seen far too much of during recent years. It doesn't matter which party or candidates you support: if Congress or state legislators don't discuss, introduce bills about or vote upon the causes you believe in, the programs that many of us rely on will continue to be under attack or at risk.
 
As one example, consider the Convention on the Rights of Persons with Disabilities (CRPD). Disability leaders from around the world have worked for several years to create disability rights legislation that generally follows the outline of our own Americans with Disabilities Act (ADA). That treaty doesn't undo anything that the ADA has created, yet the Senate has refused to ratify it for fear of losing American "sovereignty." Fortunately for the rest of the world, over 140 countries have seen fit to adopt or ratify the CRPD. Unless the Senate brings it up for a vote, the hope of getting it ratified in the US in the near future appears dim at best.
 
I hope that I didn't intimate that Congress is ignoring us completely. After all, they did pass the Achieving a Better Life Experience, or ABLE Act, shortly before they took their annual holiday recess last year. This law will allow people who are disabled before age 26 to accumulate up to $100,000 in a tax-free savings account without jeopardizing their Medicaid Insurance. That seems like a good deal, right?
 
Durable Medical Equipment, especially mobility devices, will continue to be a problem. The Centers for Medicare and Medicaid Services (CMS) has touted the money they have saved through the elimination of fraud in the Medicare program by closing the Scooter Store and similar vendors that were charged with defrauding the government. That resulted in CMS establishing a competitive bidding program and drastically reducing the number of equipment vendors in each region. As a result, it can take over a year to receive a new wheelchair, even after it is authorized by medical professionals, and the vendor who sells it may be located many miles away and may not even be able or willing to keep it repaired. Despite those drawbacks Congress likes the savings that CMS has reported, so competitive bidding will continue.
 
Home-based attendant care is a critical component when it comes to independent living and deinstitutionalization. New rules, either in effect or being discussed, are having a major impact on those striving to remain independent. Overtime pay is being required, even for family caregivers, and homecare unions are working to establish a requirement for 75 hours of mandatory but unpaid training for caregivers. Since that training is even going to be required for part-time help, it is sure to become increasingly difficult to recruit individuals for that important profession.
 
Transportation, especially for those who use mobility devices, continues to pose problems. Breakdowns of wheelchair lifts on buses continue to make public transit problematic, but it is sad how many cross-country vacation or business trips have been ruined when airlines discriminate against us, mishandle or damage our wheelchairs, then take their sweet time about getting them repaired or replaced. We shouldn't have to risk injury or damage to our mobility devices whenever we travel. Hopefully the petition being circulated to encourage Congress and the Department of Transportation to mandate wheelchair tiedown spaces on planes will eventually work.
 
All of the above may explain why the new year didn't seem quite as rosy to me as it might have been. In fairness, I should point out that not everything is "doom and gloom."
 
I predict that more research findings will be announced this year that will get us closer to finding a "cure" for spinal cord injuries and other neurological conditions. An important part of life is being able to have hope for a better future, so for all of you researchers out there, "keep on researching!"
 
We are also fortunate to have dozens of organizations and thousands of disability advocates who work tirelessly to protect our rights and the programs we depend upon. There are far too many to mention individually, but you probably know them . Their efforts are sure to prevent or minimize, at least to some extent, some of the problems that I mentioned above. Whenever I have an opportunity to support them financially, sign on to one of their petitions or generate letters to lawmakers, I plan to do so. Hopefully you will as well, since we all depend upon them.
 
Here's to a better 2015, despite the challenges.
 


© 2015 Michael Collins | Like Mike on Facebook
Posted by Community Admin on Jan 13, 2015 4:50 PM America/New_York

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