Federal Updates
MS Public Policy Conference
The chapter delegation attended the annual conference in Washington D.C. held March 9-11. Priority issues were Comprehensive Health Care Reform, National MS and Parkinson’s Disease Registry Act, and Increased MS Research Funding through the Congressionally Directed Medical Research Program (CDMRP). Members visited Senators Gregg, Shaheen, Kerry, and Kennedy and Representatives Shea-Porter, Hodes, Delahunt, Markey, Frank, Tsongas, Olver and Neal. The delegation urged all members to join the House or Senate MS caucuses.
Congressional MS Week Resolution
MS Awareness Week 2009 was marked by the first ever federal “MS Awareness Week” resolution in Congress read on the floors of the U.S. House and U.S. Senate.
Eliminating the Two-Year Wait for Medicare
Are you currently approved for SSDI and stuck in the two-year wait for Medicare or did this previously apply to you? The National MS Society is committed to eliminating the wait period and wants to hear your story.
Contact Michelle Dickson at 1-800-344-4867 ext 146 or michelle.dickson@mam.nmss.org
MS Activist Blog. Check out the latest federal news and share your views! http://msactivist.blogspot.com/
State Updates
Massachusetts
 MS Action Day, April 15, 2009. From left: Sheila Levanson, Robert Burke, Gary "Shane Levanson, and Senator Bruce E. Tarr, Minority Whip |
MS Action Day
On April 15, two-hundred activists, including individuals with MS, family members, legislators and staff, disability advocates, state personnel and health acre professionals, gathered for the seventh annual event. It coincided with MS Week in the Commonwealth as declared by the legislature and the Governor. The rally line-up included key note Speaker Amy Whitcomb Slemmer, Executive Director of Health Care For All; Senator Montigny and Representative Elizabeth Malia; Laurie Burgess from the Executive Office of Health & Human Services; and MS activists Bruce Wright and Jim Beagan. The rally was followed by visits with legislators.
Funding for MS Home Links
State funding for the chapter’s care management program was not specified in the Governor’s FY’10 budget but the House budget restored the line-item with appropriate language and the Senate budget is in process.
Funding for the Community First 1115 Medicaid Waiver
The Governor’s budget includes funding for 21 million dollars and the House appropriated $16 million. This waiver, if funded, would provide an array of home and community based services for the first time for severely disabled younger adults and would waive spousal income when determining eligibility.
Legislative Priorities
The chapter has filed two bills and is still determining the full priority agenda for the two year session. SB2009 is a resolution urging Congress and the President to eliminate the two-year wait for Medicare. SB582 urges the administration to waive spousal income when determining eligibility for severely disabled adults.
New Hampshire
Budget Funding for the Catastrophic Illness Fund (CIF)
The Governor’s two-year budget recommendations propose eliminating funding for the CIF. MS was included in the eligibility criteria for this state fund in 2005 as a result of MS legislation. 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 people with MS accessed this fund. The chapter has begun working with the media, MS beneficiaries and the American Cancer Society (ACS)-NH Chapter to foster public awareness about the impact of the loss of this funding, including a joint-Op Ed with the ACS. We are taking action to urge the legislature to include funding in their proposed budget this spring.
Parking Advocacy with State Officials
Chapter staff and GRC members continue meeting with staff from the DMV and department of Safety Commissioner of Safety to seek improvements to the drivers manual, DMV website and public education about laws pertaining to accessible parking.
Legislative Priorities
The N.H. Government Relations Committee has filed legislation for the 2009 session. HB485 establishes a committee to study enforcement of the walking disability placard. The bill passed the House and is in the Senate. HB564-FN, relative to designating accessible parking spaces “Van Only,” was retained in the House.
Government Relations Committee 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.