Federal Updates
Collaboration with the Obama administration
The MS Public Policy office began working with the Obama transition team and Senator Kennedy’s office to get an early start on advancing priority issues such as funding for biomedical research and comprehensive health care reform.
Peer Reviewed Medical Research Program Funds Three MS Programs
Last year, MS activists helped secure funding for MS research programs through the Department of Defense (DoD). Advocacy played a crucial role in getting MS listed, for the first time, in the Peer Reviewed Medical Research Program (PRMRP) for the FY’08 Defense bill. The PRMRP is a competitive program that funds initiatives that prove scientific merit and a direct relevance to the health of individuals connected to the military. This promising opportunity resulted in three awards being approved for MS research. Congratulations to investigator recipient Heather Wishart from Dartmouth College, one of the three nationwide winners.
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 1-781-693-5146 or michelle.dickson@mam.nmss.org
MS Activist Blog. Check out the latest federal news and share your views! http://msactivist.blogspot.com/
Massachusetts Updates
Chapter Priorities
Join hundreds of activists for the seventh annual MS Action Day on Beacon Hill from 10: 30 a.m.-1:30 p.m. in the Great Hall, State House. Voice your support for key legislation and budget funding to support the needs of people with MS and their families. Amy Whitcomb Slemmer, Executive Director for Health Care for All, is the keynote speaker. This year’s sponsors are Senator Mark Montigny and representative Elizabeth Malia. Visit online for more information and to register. See you on Beacon Hill.
The remaining MS HomeLINKS State funding for the chapter’s care management program survived despite January emergency cuts by the Governor and the chapter is working with the legislature to restore full funding for the FY’10 budget.
Legislative Priorities
The chapter has filed two bills and is still determining the full priority agenda for the two-year session. The first bill is a resolution urging Congress and the President to eliminate the two year wait for Medicare. The chapter is also working to change the state medicaid eligibility rules so that a spouses’ income is excluded from a severely disabled individual’s application. Spousal income can penalize an individual’s ability to receive care in the community, yet be insufficient to pay privately for these critical services. If you have been denied Medicaid due to your spouse’s income and have been unable to meet the one time deductible or “spend down” for Common Health, please contact Michelle Dickson at 781-693-5146 or michelle.dickson@mam.nmss.org to share your story.
New Hampshire Updates
New Winter Parking law effective January 1, 2009
A law initiated by the chapter requires private and public parking lot owners to keep accessible parking spaces clear of snow, debris and other objects or face a $250 fine issued by police. Speak up and report violations in your community!
New Parking Access Aisle signs for sale!
Do you struggle with drivers who park in or block the accessible parking space access aisles — the adjacent striped area for individuals to navigate assistive devices? A reminder, it is illegal to block this space and drivers are subject to a $50 fine.
Signs to further discourage this practice on public and private property are now available for purchase by the public at large. Contact: Allen Burgess, Sign Shop, Prison Industries at 603-271-1874
Manchester Accessible Parking Awareness Day
Manchester Mayor Frank Giunta joined local officials, including the parking enforcement division, in kicking off the “winter accessible parking event” on December 2. Kudos goes to the Mayor and city officials for their commitment to the rights of citizens with walking disabilities and for serving as an exemplary model for all communities.
Parking advocacy with state officials
Chapter staff and volunteers continue meeting with staff from the Department of Motor Vehicles and the Commissioner of Safety to seek improvements to the drivers manual, DMV website and public education about laws pertaining to accessible parking.
Community accessible parking awareness events
If you are interested in your community hosting such an event, call 781-693-5146 for a community toolkit of resources.
Legislative priorities
The NH Government Relations Committee has filed legislation for the 2009 session:
- HB485-Establishing a committee to study enforcement of walking disability placard.
- HB564-FN relative to designating accessible parking spaces “Van Only.”
Government Relations Committee members: This committee meets monthly in Manchester with conference call opportunities and welcomes new members with a passion for advocacy or legal, public policy or health care experience. To inquire further, contact Michelle Dickson at 1-781-693-5146.
Amendment restoring ADA protections passed
The Act became effective January 1, 2009, bringing millions of people back under the protection of the Americans with Disabilities Act of 1990 (ADA).
How the ADA was eroded
As originally written, the ADA was designed to ensure that all people with disabilities could receive reasonable accommodations in the workplace. But over time, court rulings narrowed the definition of “disability” to exclude those who could “control their symptoms.” This included people with MS responding well to their disease-modifying drug.
The new Act reverses four Supreme Court decisions that had eroded ADA coverage for people with MS and other conditions, including diabetes and epilepsy, that are controlled by medication, are episodic and/or do not always severely restrict major life activities.
New protections
Starting this year, courts may not consider “mitigating measures” such as prescription drugs, hearing aids or artificial limbs. The new law says “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”
To learn more about this historic bill, and the protections it provides, visit adabill.com.
MS Action Day
The National MS Society,
Central New England Chapter
presents
April 15, 2009
Keynote Speaker: Amy Whitcomb Slemmer
10:30 a.m. - 1:30 p.m.
Register
A unique opportunity to raise awareness of MS and advocate for better public policies for those with adult onset disabilities. Action Day consists of a rally, followed by the opportunity to meet with your legislators. All materials are provided.