Be your own best advocate

Jennifer LaRue Huget

Your whole life changes when you learn you have MS; mine sure did. In my case, those changes weren’t largely physical. Rather, my diagnosis caused me to reconsider my place in the world and the way I interact with other people and institutions.

Like many others with MS, the process of learning to live with my condition has opened my eyes to the necessity for me to become an advocate – for myself and, by extension, for others with MS.

I suppose I was accustomed to the concept of advocacy before I was diagnosed. As a mother I advocated for my kids, seeking the best health care, education opportunities and play dates possible.

Those of us with MS also have to learn to advocate for ourselves. We need to assert our own needs and effectively communicate them to our doctors, employers, insurers, even our families and friends. But self-advocacy doesn’t necessarily come naturally. I, for one, have always been a bit reticent to ask others to do things for me.

The National MS Society, recognizing that many people are in the same boat, offers helpful advice for learning to take on the role of self-advocate in the key realms of our lives, from our workplaces and schools to our families and communities.

A recent legal settlement highlights the importance of self-advocacy for people with MS navigating the healthcare system.  In the case Jimmo vs. Sebelius (in which the Society was a plaintiff), a federal judge on January 24 approved a settlement that reaffirmed patients’ access to Medicare benefits regardless of whether their condition improves as a result of the treatment provided.

A bit of background: For decades, Medicare beneficiaries, especially those with long-term or degenerating conditions and those who need rehabilitation services, have been denied care on the grounds that those services didn’t result in improvements to their condition. For patients whose conditions remained stable or chronic, rehabilitative services were often deemed to be for “maintenance only,” and thus weren’t covered.

The new settlement reinforces the original intent of the law – that it’s not legal for Medicare to deny coverage on that basis. It requires the Centers for Medicare & Medicaid Services (CMS) to revise its Medicare Benefit Policy Manual and numerous other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled maintenance services in home health, nursing home and outpatient settings.

Here’s where self-advocacy kicks in. The new policy is already in force. People with MS don’t have to wait until the CMS revises its documents to gain coverage for the care they need. People who are denied Medicare for skilled maintenance nursing or therapy because they are “not improving” can appeal those decisions right away. That’s a very important form of self-advocacy.

To that end, another of the plaintiffs in the settlement, the Center for Medicare Advocacy, offers self-help materials to help patients understand coverage rules and learn how to contest Medicare denials for outpatient, home health, or skilled nursing facility care. And the Society has produced a guide to facilitate communication between MS clinicians and health plans when disputes over coverage arise.

Of course, it’s important to bear in mind that the Jimmo settlement doesn’t guarantee coverage; providers and people seeking Medicare coverage for treatments still have to demonstrate that the care is medically reasonable and necessary. Still, eliminating the standard that required patients to show improvement in their condition, not just maintenance, is a big step in the right direction – and one that we should all be aware of as we navigate the healthcare system.

The term “self advocacy” can sound kind of daunting; when I first heard it, I thought it meant going to Washington, D.C. to lobby for funds for MS research. I have since learned that, yes, lobbying is at one end of the self-advocacy spectrum. But at the other end of that spectrum there are many everyday opportunities for self-advocacy. Making sure you’re getting the medical attention you need? That’s self-advocacy. Reminding others that you can still do your job well, despite any limitations your MS places on you? That’s self-advocacy.

At the most basic level, though, self-advocacy begins with becoming informed. As I said at the start, self-advocacy doesn’t come naturally to me. But I can read and learn and discuss issues related to MS. Armed with information, I can advocate for myself with the best of ‘em.


Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her Web site is www.jenniferlaruehuget.com.