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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.

Kicking The Can Down The Road To 2016

New Year's Resolutions have always been problematic for me. On January 1st of each year I decide that I am finally going to get the things done that I had been putting off for many years prior, and by the next January 1st I find myself making those same resolutions again. It is like the movie Groundhog Day, only in my case it is groundhog year. By default, unmet resolutions become resolutions for the new year; I can "kick the can down the road" with the best of them.
 

8621634c38632210fc3ea46a07af132b-huge-unMy goals for 2015 were to lose 20 pounds, increase my meager exercise regimen, get out and about more often, travel for fun, and socialize more with friends and family. Unfortunately I am only one out of five when it comes to keeping those resolutions.

Instead of losing weight, I think I gained another 15 pounds; microwaving frozen dinners and purchasing what looks good from the deli counter combined with the contents of my snack drawer to do me in when it came to weight loss. There were also many days when I skipped exercising because I was too busy writing, doing other things that were more fun, or I simply forgot.
 
Most of my trips were for short jaunts to the grocery store to pick up enough provisions to last me for another two or three days, and I took no long vacation trips that were solely for relaxation. The sole goal that was achieved, at least to some extent, was met by attending several family activities like birthday parties, holiday gatherings and grandsons' sporting events--but only when the weather was right and the venues were accessible. Hopefully I will have better luck accomplishing my resolutions in the months ahead.
 
One of my initial intents in writing this was also to reflect upon, and celebrate, the many accomplishments that benefited people with all types of disabilities in 2015. To help do that, I reviewed my first Reeve blog for 2015. Unfortunately, after reading that blog (2015: Our Challenges Continue) and then reviewing my last blog (The Fading Promise of the Disability Voting Bloc), I must now report that there was not much positive change during 2015, just as in the years preceding it.
 

I am not alone in having "kicked" a can or two down the road last year. My failure to accomplish resolutions impacted only me. The inaction of lawmakers, the courts and heads of agencies that had an opportunity to bring about improvement in the quality of life of the disability community but decided once again to either sit back and do nothing or to, in some cases, make things worse had more dire consequences.
 
A glaring example is the failure of the U.S. Senate to finally ratify the Convention on the Rights of Persons with Disabilities (CRPD). This international disability treaty was first introduced in the United Nations in 2006, took effect in 2008 and the United States signed onto it (along with 81 other countries) in 2009. It is a matter of pride to disability advocates in the U.S. that the CRPD is modeled in many respects after our own beloved Americans with Disabilities Act.
 
Since first being introduced, over 140 countries have ratified the CRPD, and many of those were countries that had given no formal recognition to the rights of people with disabilities prior to signing on or ratifying the convention. Yet, here we sit, over 25 years after passage of the ADA, and the Senate does not have the will to ratify this important treaty that would do nothing to change or weaken our existing landmark disability civil rights law.
 
Durable Medical Equipment (DME), especially mobility devices, will continue to be a problem area for people who rely upon this lifesaving, and liberating, equipment. After the Centers for Medicare and Medicaid Services (CMS) pointed out the money saved through the elimination of fraud in the Medicare program by closing vendors that were charged with defrauding the government, they continued to ratchet down the program in other areas.
 
A competitive bidding program for exclusive rights to sell DME radically reduced the number of equipment vendors in each region. Those regional sole provider rights were awarded on a cost basis, not on an organization's ability to provide customer service. As a result, it can take over a year--and several appeals--to receive a new wheelchair, even after it is authorized by medical professionals. The vendors who sell them may be located many miles away and thus may not even be able to keep the equipment operating or repaired. Despite those drawbacks, Congress likes the savings that CMS has reported, so competitive bidding will continue.
 
CMS also threatened to cease reimbursement for many of the critical components of complex rehabilitation technology wheelchairs, which they categorized as attachments rather than key parts of our mobility devices. Wheelchair seat cushions, headrests, electronic controls, the tilt and recline capabilities, adjustable leg supports and trunk supports are not luxury items. Without them, a wheelchair would be unusable for most people. Intense grassroots advocacy efforts led by the Christopher & Dana Reeve Foundation and many disability advocacy organizations including the United Spinal Association caused Congress to put that proposal on hold for a year, but it is still out there, waiting.
 
The availability of home-based personal assistance services is a critical factor when trying to create the opportunities for integration, independent living and deinstitutionalization  as mandated by the 1999 Supreme Court Olmstead decision. For many people, especially if they live in one of the many states that have not yet applied for a Medicaid Home and Community-Based Services waiver, survival in the community is not a possibility without the availability of attendant care.
 

a7577e06b50b65025d3636c360356f16-huge-unWhat more can happen in the year ahead? I wish I could say, but it appears that all of these continuing challenges are like the famed giant boulder that the mythical Sysiphus is sentenced to push up a mountain for eternity. No matter how much we protest and struggle, it seems like that boulder just keeps getting bigger.
 

My friends and I are not about to let those challenges roll over us without a fight. We will continue to send letters to, visit or make phone calls to lawmakers, demonstrate together and sign on to petitions. Those of us lucky enough to have an online "soap box" or editorial presence pledge to inform the public or rally the troops when things are about to go wrong. Without such coordinated efforts, especially in this presidential election year, it would be too easy for our causes to get lost in the shuffle and, in the end, result in change that impacts, and hurts, us all.
 
Here's to some better outcomes in 2016, and I hope you'll join me in pushing that boulder over the hill.
 
© 2016 Michael Collins | Like Mike on Facebook


 
Posted by Michael Collins on Jan 4, 2016 5:53 PM America/New_York

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