Observations on Self-Advocacy

Reprinted from PN March 2011

It’s important to be an advocate for yourself in order to live a healthier, more independent life.

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After nearly 30 years of living with a spinal-cord injury (SCI), I am moderately confident I can speak to some core truths, or at least my experiences, related to advocating for appropriate equipment and supplies to support a healthy and active life.

Self-advocacy is unique for each of us living with mobility challenges and DME [durable medical equipment] needs, but I do believe there are consistent principles we can all follow to help assure our needs are met. As I write this, I’m speaking to consumers, but as a provider, therapist, or other healthcare professional, you can read this from your clients’ point of view and share with them how effective self-advocacy can help them live healthier, more independent lives.

First, you need to understand your coverage specific to medical equipment. Review your policy and make a call to the support services number. Before calling, know what you want to ask. Write out your questions and have them in front of you. Consider subjects such as, What documentation will you need to support the provision of your evaluation? Fittings? Equipment and provision? Followup?

This will prevent surprise expensive bills on the back end of the process.

Also during the call, be cordial but always get the first and last name of the representative with whom you’ve spoken—even when he/she might not care to share it. Keep a log of all communications including date and time, what was discussed, and what you were told.

If you’re challenged to write, be creative—tape record notes immediately following the call, or have a friend or significant other take notes, dates, names, etc. I have ample personal experience in “fighting” some very expensive bills related to equipment and procedures, and such documentation has been critical to successfully defending my position in many cases.

If you do find yourself in a challenge over equipment provision or payments, know and follow the appeals processes of your provider. Don’t relent simply because it’s frustrating or the process doesn’t seem to be a straight line. It is often anything but a simple and direct process to secure complex rehab equipment and have it supported.

Another great asset can be one or more members of your critical care team—your physiatrist, physical therapist, and certified rehab technology supplier (CRTS). Keep them apprised of progress and enlist their supports fairly.

People with coverage from more than one insurer (for example, Medicare and Blue Cross) need to know which policy is primary and which is secondary—and in some cases, they may even have a third carrier. They can go to and critically review this information if they are covered by Medicare or might have dual Medicaid coverage. There are strong FAQ links for both, as well as toll-free numbers, for any eligibility inquiries. There is nearly always an online resource for private coverage as well. If not, make sure you have the most current hard copy of the coverage/policy manual and review the key sections on medical equipment or DME coverage.

Finally, consumers should not assume that self-advocacy begins and ends with questions of insurance coverage and support. Advocating is a life-long pursuit that includes gaining knowledge, networking with others, and exploring available resources—and there are many. Most will find peer support groups right in their own community. If not, they can consider forming their own support group. And I strongly encourage all individuals to seek out and engage appropriate, respected consumer organizations such as the National Spinal Cord Injury Association (NSCIA, and others including United Spinal Association, Paralyzed Veterans of America (PVA), National Multiple Sclerosis Society, United Cerebral Palsy Association, Muscular Dystrophy Association (MDA), or The ALS Association. These groups can be tremendous assets in holding fast to your rights—assuring you are well-informed of those rights, and perhaps most importantly, taking responsibility for your own health and well-being.

Years ago I read an abstract from a clinical study related to levels of SCI and the incidence of skin ulcers. What I remember most clearly was that the incidence of serious skin breakdown was more prevalent in those with greater independence or lower injuries where the subject had more personal control to observe and monitor his/her tissue health. My experience has been that with knowledge, confidence in that knowledge, and healthy insistence on controlling our own well-being, all of us who depend on complex, or even less complex, DME for our mobility are well-prepared to advocate for ourselves or others for a lifetime.


This column is reprinted with permission from NRRTS Directions.


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Observations on Self-Advocacy


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