Board chair Doug Bryant and board members Bob Picone, Ken Jones, and Gail Kelly attended the Public Policy Conference in March. Gail was recognized as “Congressional Staffer of the Year” and Senator Olympia Snowe of Maine received a new “Lifetime Achievement Award.” Federal sequestration cuts included $1.55 billion from NIH funding and $209 billion from the FDA.
The chapter is actively supporting four legislative measures: expand Medicaid coverage under the federal Affordable Care Act to ensure low income working adults can be covered, preserve funding in the state budget for Maine’s Low Cost Drug Program for the Elderly and Disabled, reverse parts of Public Law 90 which has disproportionate health insurance rates for individuals and small businesses in rural areas, and remove barriers for property owners to build accessible ramps on their homes. The chapter is proud to be a member of Cover Maine Now!, a coalition dedicated to working with state government to pursue the Medicaid expansion option.
Five legislative priorities have been identified: funding for Home LINKS, legislation to prohibit specialty tiers and high co-pays in prescription drugs, paratransit funding and reform, Spousal Medicaid waiver, and amending the state building code to match key ADA requirements. Also, the chapter continues to push an amendment to require power door openers in the state building code for all new buildings and certain renovated buildings, as well as a change in the heating regs for apartment buildings.
The chapter continues to participate in the Governor’s Commission on Disability’s ADA and Parking committees. Three priorities this session are: expansion of Medicaid, legislation to provide a consumer friendly review process for durable medical equipment under the Medicaid program; and involvement on the New Hampshire health care exchange under the provisions of the Affordable Care Act. The chapter is participating in the NH Disability Planning Group at the Institute on Disability at the University of New Hampshire, with goals to promote and maximize health, prevent chronic disease, improve emergency preparedness, and increase the quality of life among people with disabilities.
NH Respite website launched at: nhlifespanrespite.wordpress.com
The chapter is supporting four policy initiatives: create a new office for consumer patient health care protection, the Green Mountain care board promulgation, expand telemedicine beyond the health care setting, and track progress of the VT Medicaid/Medicare “ Dual eligible proposal” not yet approved.
The Burlington Advisory Committee on Accessibility has been re-tasked with presenting a plan to address accessibility needs and concerns in Burlington, including infrastructure and programming. The plan will tackle various issues such as: accommodations in City facilities and public areas, accessibility of City-sponsored programs and events, and the development of a culture of awareness.
New Accessible Adventures website launched at: AccessibleAdventuresVT.org
Check out the latest federal news and share your views!
A Little Time Makes a Big Impact! Become an MS activist and make your mark against MS.
- Visit nationalMSsociety.org/get-involved/take-action/index.aspx
- Take Action and sign up to receive federal and state alerts.
- Recruit a friend!
Are you a person with MS or have a connection to the disease? Do you have professional expertise in the area of law, medicine, disability, fundraising, policy, or community organizing? Do you have a commitment to working towards achieving short and long-term goals? Are you willing to speak before government officials, at public hearings, or with the media? Are you committed to working as a team and working on projects? If any of these describe you, contact Michelle.Dickson@nmss.org.
New health insurance programs are still offering coverage to uninsured individuals with a pre-existing health condition, including MS. Need assistance understanding this new program or advice about health insurance? Call 800-344-4867.
By Jennifer Larue Huget
Your whole life changes when you learn you have multiple sclerosis; 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 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 healthcare, education opportunities and play dates possible.
But 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 at nationalMSsociety.org/selfadvocacy 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 who are navigating the healthcare system. In the case of 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 needed 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. The law 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 at medicareadvocacy.org/take-action/self-help-packets-for-medicare-appeals to help people understand coverage rules and learn how to contest Medicare denials for outpatient, home health or skilled nursing facility care.
Of course, it’s important to bear in mind that the 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. Visit her website at jenniferlaruehuget.com.