Off Label Bill Introduced
The National MS Society introduced new legislation which would require Medicare Part D coverage for prescription drugs to cover “off-label drugs” used to treat MS.
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!
The Americans With Disabilities Act (ADA) Turns 20!
The Greater New England Chapter served as an event sponsor for each state’s ADA anniversary event. MS informational booths were at each location. Chapter members, disability activists and public officials joined together in celebrating the milestone passage of disability rights. In Maine the celebration hosted by Apha One coalition was held at Husson University, Gracie Theatre with ADA recognition awards presented and officiated by Governor Baldacci. In Massachusetts, nearly 1,000 citizens gathered on the Boston Common which began with a processional march, followed by a full program of speakers, entertainers and activists including Governor Patrick, Mayor Menino, national activist John Hockenberry and comedienne and chapter member Jonathan Katz. In New Hampshire, activists gathered in Concord. The program included keynote speaker Andrew Washburn from the U.S. Department of Justice, ADA awards, Governor Lynch’s proclamation and refreshments. In Vermont, a large gathering was held on the lawn of the State Capitol in Montpelier with speeches followed by a picnic.
Gov. Baldacci, Maine,
at ADA Celebration
l-r, Michelle Dickson,
Jonathan Katz, Comedian
VT GRC at the VT
ADA Celebration in
Special thanks to our members who volunteered at the event or attended!
MS Policy Issue Feedback Wanted
Are there policy issues you would like our chapter to address? Do you have ideas on how we can improve the independence and well-being of those affected by MS or want to share your experience as it relates to the need for a change in laws or regulations? The government relation committees in Maine, Massachusetts, New Hampshire and Vermont are actively determining priorities and would like feedback from you! Contact 1-781-693-5146 or firstname.lastname@example.org.
Government Relations Committee Volunteers Wanted!
The GRC in all four states is actively seeking committed individuals to join us for our monthly meetings to change public policies to better support people with MS. 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 at email@example.com.
Government Relations Committee
A volunteer government relations committee is now forming. Check back in the next issue for updates!
State Funding for MS Home LINKS
Home LINKS has taken a 73% cut since 2009. The FY11 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 Department of Public Health is allocating $75,000 from this line item to help fund Home LINKS in FY11. Given the current state economy, the funding was in jeopardy and we are grateful that some funding was preserved. Hopefully, we will see an increase in the state support for this program in the future.
MA Coupon Bill—HB 4689 was voted favorably by the House and Senate and is expected to become law in informal session before the start of the next legislative session in December.
Medicaid Spousal Waiver/ “Marriage Penalty” Stories Sought—Are you married and have you 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 1-781-693-5146.
Lifespan Respite Coalition—The chapter is actively participating in a newly formed coalition seeking a federal grant to enhance family caregiving resources and supports. Massachusetts applied for a three year grant to expand respite care programs to benefit those caring for family loved ones across the lifespan. A federal decision on our application is pending.
Catastrophic Illness Program (CIP) Funding has been preserved and is now available!
The state’s next two-year budget still includes continued funding for the CIP due in part to the joint efforts of the chapter and the 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. Funding for FY11 is now available and persons with MS are encouraged to apply. 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 http://www.dhhs.nh.gov/DHHS/BEAS/cip.htm.
HB1262 Thanks to Representatives Carol Williams and Bob L’Heureux for sponsoring HB1262 for the Chapter, which imposes fines on property owners for violations in accessible parking signage. The bill was signed into law by Governor Lynch!
The Burlington City Council is considering a proposal submitted by the Chapter’s Government Relations Committee to require power door openers in public buildings that are new or undergoing renovation.