Federal Updates
Health Care Reform
The recent passage of the health care reform bill represents an important step toward comprehensive reform. Passage serves as a critical first step as we continue to advocate for the development and modification of legislation that will ensure that the needs of people with MS are met. MS Activists met with Health & Human Services Secretary Sebelius to discuss issues including health care reform, care-giving issues, ongoing physical therapy coverage under Medicare for people with MS, and to request full funding for the Lifespan Respite Care Act.
The ADA 20th anniversary approaches!
July 26 marks the signing of this landmark legislation which has opened new doors for all people with disabilities. Check nmss.org for more information.
MS Activist Blog
Check out the latest federal news and share your views!
http://msactivist.blogspot.com
Action Alert Network
Are you registered as an MS activist? We need your voice. One link will sign you up to receive federal and state alerts to take action. Recruit a friend!
http://www.nationalMSsociety.org/get-involved/take-action/index.aspx
State Updates
Maine
The chapter is seeking a full-time advocacy coordinator. Visit the chapter web site employment section for more details.
Massachusetts
MS Action Day on Beacon Hill
More than 150 activists, family members, health professionals and lawmakers rallied in the Great Hall then met with elected officials to advocate for funding for the MS Home LINKS program and passage of SB582 (see below). Senator Montigny and Representative Mary Grant cosponsored the event and presented resolutions recognizing the week of May 1-7 as “MS Week in the Commonwealth”.
State Funding for MS Home LINKS
Home LINKS has taken a 73% cut since 2009. The FY’11 House budget appropriates $ 6,124,484 for line-item 4513-1111 which includes funding for Home LINKS but falls short of last year’s amount. The senate (budget not completed) must restore level funding to 4513-111 in the amount of $7,295,685 to ensure funding in the amount of $112,000 for Home LINKS. A conference committee must reconcile differences before the final budget is sent to the governor. To take action, check the alert on the chapter web site.
SB582- Medicaid Spousal Waiver
The bill sent recently to a study committee but the chapter continues to advocate for this issue and identify couples who would benefit from this waiver.
Medicaid Spousal Waiver/ “Marriage Penalty” Stories Sought!
Are you married and been denied Mass Health/Common Health because of income and are unable to meet the one-time spend down to qualify? If so, please contact Michelle Dickson at 1-800-344-4867.
Lifespan Respite Coalition
The Chapter has joined and will actively participate in a newly formed coalition seeking a federal grant to enhance family care giving resources and supports.
Government Relations Committee Volunteers Wanted!
The GRC is actively seeking committed individuals to join us for our monthly meetings in Waltham. 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, please contact Michelle Dickson at michelle.dickson@nmss.org
New Hampshire
Catastrophic Illness Fund Program Threatened! (CIP)
The state’s next two-year budget includes continued funding for the CIP due in part to the joint efforts of the chapter and American Cancer Society. The fund provides financial assistance up to a maximum of $2,500 to qualified low-income residents who incur out of pocket medical expenses. Last year, 58 individuals with MS accessed this fund. Cuts have already been made to this year and funding is threatened. Contact Michelle Dickson at the chapter if you have accessed these funds. To learn more about the program contact 1-800-852-3345 ext. 4495 or www.dhhs.nh.gov/DHHS/BEAS/cip.htm.
NH Policy Forum
In April activists and public officials gathered in Concord for the second annual Chapter-sponsored event: Improving Community Accessibility: Progress and Challenges. A lively panel discussion included representatives from disability organizations and activists who shared perspectives on the history and status of the ADA.
HB1262
Thanks to Representatives Carol Williams and Bob L’Heureux for sponsoring HB1262 which imposes fines on property owners for violations in accessible parking signs. The bill has passed the House and is in the Senate.
Government Relations Committee seeks new members. This committee meets monthly in the Manchester office with conference call opportunities and welcomes new members with a passion for advocacy or professional, legal, public policy or health care experience. To inquire further, contact Michelle Dickson at 1-800-344-4867.
Vermont
The ADA Turns 20!
Plans for public celebrations in recognition of the Americans with Disabilities Act are underway. Check back in the advocacy section at MSnewengland.org for updates!
Vermont Day at the Capitol
On March 29, Vermonters affected by MS met at the statehouse in Montpelier to raise awareness of multiple sclerosis. The morning included a coffee with legislators in the statehouse cafeteria. Our members met with the Lieutenant Governor, Speaker of the House, Chairs and members of Appropriations & Health Care committees for both the House and Senate, the House Human Services committee Chair and gubernatorial candidates, among others. Our presence and purpose were announced on the floor of both the house and senate. This was one more step on the part of our Vermont Government Relations Committee to raise awareness and affect positive change for people in Vermont with MS.
Legislative Priorities:
Recently signed in law: S. 150 increases the fine for illegally parking in a space reserved for persons with disabilities to $200 and adds ADAAG conformity requirements.
H.659- An act relating to prescription drug coverage by health insurers.
“Challenges for Change”-legislative proposals to address and reduce millions in spending in FY 2011-2012 which focuses in particular on coordinated health systems and community based long-term care.
Legislative Platforms Supported through Membership in Local Coalitions
Vermont Coalition for Disability Rights Priorities include S.150, maintaining current Medicaid benefits and the Medicaid long-term care services for individuals with disabilities and state-funded programs to ensure independence, community participation and employment, preserving and increase community transportation and public transit funding, including state and federal funds for critical care transportation and senior and accessible transportation.
- Vermont Businesses for Social Responsibility
- S.88/H.100 Health Care Financing and Universal Access
- H.510 Public Health Care Coverage Option
- H.372 Vermont Freedom Health Plan
- H.512 Vermont hospital security plan
- H.491 Single-Payer Health Care
- AARP Vermont-GRC aligns with the transportation and smart growth principles
- H 741 An act relating to adhering to complete streets principles in transportation project planning, development and implementation.
To learn more about these bills or get involved contact Christine Lloyd-Newberry at 1 800 344 4867, option 2
MS Activists Make MS a Priority on Capitol Hill in March
More knowledge needed
Currently, there are no accurate estimates of how many people in the United States have MS. A national MS registry could provide invaluable information on the incidence and prevalence of the disease, allowing researchers to investigate potential geographic, genetic or environmental risk factors.
Toward this important legislation, MS activists, who gathered in Washington, D.C., this March, sought co-sponsors for the National MS and Parkinson’s Disease Registries Act.
Supporting respite programs
The availability of respite care for all age and disability groups is at a dismal low. While the Lifespan Respite Care Act was passed in 2006, the program has been severely underfunded ever since its creation.
Activists urged legislators to commit a much-needed $94.81 million to help stressed-out families and caregivers.
For the more than 20,000 U.S. veterans diagnosed with MS, as well as all others living with the disease nationwide, more research funding from the Department of Defense could make a real difference.
Activists are requesting a $15 million appropriation to the DoD’s Congressionally Directed Medical Research Programs for MS research. Supportive legislators are already taking action, circulating a Dear Colleague letter in the House of Representatives and in the Senate.
To find out more about MS advocacy and how to get involved in public policy issues, visit nationalMSsociety.org/advocacy. Or call our office to find out about state and local issues.