The Curse of Dependency

Posted by Michael Collins in Life After Paralysis on June 05, 2015

When it comes to dependency, those of us who are paralyzed provide the ultimate examples of the negative impacts of having to count on multiple layers of people and systems for our very independence, and perhaps survival. The fact that we must deal with this on a daily basis does not make it any easier to accept. It simply means that every day has the opportunity for some link in our "chain of independence" to break, and the results can be catastrophic

The turmoil taking place in California with their Medicaid-supported personal assistance services, known as IHSS, is but one example. Other states are facing similar problems, and it is even worse in those states that have chosen not to provide such services. People with disabilities who are barely surviving on the poverty-level "wage" provided by SSI or SSDI are now facing possible reductions in the hours of caregiver services they can receive because of either state budget cuts to the program or the application of new overtime rules from the federal Department of Labor that may end up reducing the number of hours that caregivers can work. Those changes would affect even family caregivers; many do not want an outsider in their homes to care for their children who are disabled, as they have been the sole providers of such care throughout their lives.

Such major upheavals in a personal care program that has been used as an example for other states to follow in years past causes a huge break in the chain of independence that people need to remain living in their communities. To make matters worse, the state cannot handle its role as paymaster for the caregivers. Many are weeks behind in receiving their pay, with the state blaming everyone including the Post Office for the problem. It makes my own past problems with caregivers who fail to show up on time, or at all, seem minor by comparison.

As this is being written, the piece of the chain that determines my mobility continues to be frail, and even broken, in several places. My decade-old power wheelchair is barely operable, as it suffers from unexplained electronic malfunctions that cause it to die unexpectedly and for no identifiable reason.

The Centers for Medicare and Medicaid Services (CMS) has entered into a nationwide competitive bidding program for awarding the dealerships for wheelchairs and similar complex rehabilitation technology, so I am restricted to using one particular vendor that serves this area. Despite numerous attempts to diagnose the problem, that vendor has not been able to determine what is wrong with the chair. That mystery has not kept them from attempting three different solutions, and in the process I have been forced to pay hundreds of dollars in copays for parts and labor costs, and even spent an entire afternoon in bed at home while the malfunctioning wheelchair was transported to the shop to replace a drive motor -- that didn't solve the problem.

My urgent need to get this problem fixed finds me scheduled for another diagnostic visit to the vendor tomorrow while hopefully learning, far too late, what is actually wrong and how it can be repaired. That will not be the end of my mobility woes, as the manufacturer has discontinued selling the model chair I use and has only limited repair parts for it in stock.

In order to stay mobile, I am being forced to replace it with something newer, and hopefully better. That means that my circle of dependency has grown to include my primary care physician, my insurer's Physical Medicine and Rehabilitation staff, a vendor's wheelchair salesperson, my insurer's approval desk, a person or persons responsible for approvals at Medicare (probably a contractor), and the vendor technicians that will need to fit the new equipment to protect my body and meet my needs.

If any of those steps hit a snag (like a denial), or a delay, the replacement may drag on for months. There are just too many opportunities for this process to get bogged down if people don't perform as needed, and in a timely manner. Judging by the recent experiences of friends who have found it necessary to purchase a new wheelchair, I'm not optimistic that my situation will be any different from the challenges they faced.

I have already had the Medicare "in the home" wheelchair restriction mentioned to me twice, in response to my statement that it would take a powerful wheelchair to be able to traverse the steep grade between my home and the nearest bus stop. A flimsy, under-powered mobility device suitable only for indoor use would be unlikely to have a long life with my large body riding on it. Policies like that are a clear indication that the current system is not able to focus on the mobility needs of active people who participate in shopping, social opportunities and employment outside their homes.

CMS needs to change their funding rules, and hopefully soon. My elected representatives in Washington, DC will be hearing about the problems I face as this replacement process progresses, and if enough of us express our dissatisfaction perhaps they can even work together to change it.

Webcast: Dr. Dan on independence

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