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Advocacy

 
Up-To-Date FAQs on the Affordable Care Act

To help people with MS understand the Patient Protection and Affordable Care Act (ACA) signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ACAFAQ or call 800-344-4867

On this page, people can find answers to questions like: What if I am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out?

The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. In addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues.

As various provisions of the ACA kick in over the next few years, the Society will continue providing up-to-date information and links.


New ADA Rules

More than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of people living with disabilities.

The definition of “disability” had been selectively narrowed over the years. Now, the Equal Employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities, regardless if the disability is in remission.

Multiple sclerosis will almost always meet the “disability” criteria because MS limits a major life activity (namely, neurological function).

The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices, polling places and emergency preparedness centers.

Learn more at www.ada.gov. Also visit the ADA National Network at www.adata.org or call 1-800-949-4232 for information and training on how to implement the ADA in our area.


Wanted: MS “Grasstops”!

Advocacy solutions for issues confronting people with MS require the National MS Society to build and maintain relationships with top community leaders, elected officials, and decision makers who can help us efficiently achieve our goals at the highest point of contact. A “grasstop” volunteer is a person who has a promising to significant level of connection with a local, state or federal legislator or official, an individual serving at a key government agency, or an influential staff person and is willing to leverage these connections to advance MS priorities. If you are an MS Grasstop, to you, please contact Ginny Morse at virginia.morse@nmss.org or 781-693-5140.


Federal Update

US Supreme Court Weighs in on the Affordable Care Act

A conservative-leaning appeals court panel upheld the constitutionality of President Barack Obama's health care law, as the US Supreme Court prepares to consider whether to resolve conflicting rulings over the law's requirement that all Americans buy health care insurance, beginning in 2014.


Maine

Legislative Council Approves Introduction of Specialty Tier Bill

The chapter, in conjunction with members of the New England Coalition for Affordable Prescription Drugs, successfully urged the Legislative Council to approve the introduction of new legislation that would prohibit the use of fourth or “specialty tiers” for prescription drugs that would result in patients paying a percentage or “co-insurance” of the cost of drugs. If you are interested in supporting the passage of this legislation by providing testimony, contact Michelle.Dickson@nmss.org.

Save the Date: March 15, 2012

Join the chapter during MS Awareness Week at the Maine Statehouse to educate lawmakers about MS and the chapter’s policy priorities. More info to come!


Massachusetts

Legislative Priorities

  • S455 An Act Reforming Insurance Prescription Fee Practices
    Seeks to limit co-pay price tiers.
  • H1557 An Act Promoting Accessible Housing for Persons with Disabilities
    Intends to increase access to accessible housing with housing production and modification.
  • H2352/H2383/S548 An Act Relative to Prescription Drug Coupons
    This bill amends the prohibition against offering rebates or coupons for use of certain medical devices or medicines to allow for the use of pharmaceutical discount programs. Two public hearings were held this fall and MS activists provided compelling testimony.
  • S1246 An Act Relative to the Architectural Access Board
    Strengthens enforcement of the Architectural Access Board (AAB) with the Americans with Disabilities Act at the State and Federal levels.

Power Door Openers

An amendment to require power door openers in the state building code, introduced by MS activists last July, is pending approval by the full Architectural Access Board. Passage requires hearings and approval of several agencies. Many thanks to MS activist Joann D’Amico Stone and Attorney Carol Steinberg.

New Massachusetts Transportation Commission

The Commission for the Reform of Community, Social Service, and Paratransit Transportation Services, established by Governor Patrick’s Executive Order No. 530, seeks to improve and reform transportation. Linda Guiod, Executive Vice President of Chapter Programs, Services, and Advocacy, was appointed to the commission.

Heating/Cooling Regulations

Chapter advocates are exploring overheating in apartment complexes.


New Hampshire

Lifespan Respite Care Summit

In October, Chapter Trustee and Respite Care Coalition member Ken Jones participated in NH’s first Lifespan Respite Care Summit. The purpose is to learn about gaps in respite services and determine how to fill them.

Medicaid Managed Care

If you are a Medicaid beneficiary with MS, share your experience to influence the state’s proposed model for managed care. Please contact Allyssa.Thompson@nmss.org.


Vermont

Universal Health Coverage Implementation

A landmark bill was approved by the legislature last spring and the chapter will continue to weigh in on regulations and track implementation closely.

Save the Date: April 29, 2012

Join us at the State House for the annual MS Awareness event. Information to follow.

Banning Specialty Tiering For Prescription Drugs

Last session MS activists took the lead on an amendment to S.104 to prohibit “specialty tiers” on prescription drugs that would result in costly co-pays. The approved final bill included a one-year moratorium on specialty tiers. Special thanks to Senator Sally Fox, who championed this issue. To testify in support of this bill, contact Shanna.McCabe@nmss.org.

Public Accessibility in Downtown Burlington

The Vermont GRC is seeking feedback from chapter members who have experienced barriers in accessing downtown Burlington’s famous Church Street marketplace. Contact Shanna.McCabe@nmss.org or 1-800-344-4867.


We Did It!

More than 23,900 people, from 143 countries, signed a petition that calls on employers and decision makers to remove the barriers that prevent people with MS from working.

The petition was delivered to the UN High Commissioner for Human Rights in Geneva, and helps mark the fifth anniversay of the UN Convention on the Rights of Persons with Disabilities.


MS Activist Blog

Check out the latest federal news and share your views!

http://msactivist.blogspot.com


Action Alert

A Little Time Makes a Big Impact! Become an MS activist and make your mark against MS.

  1. Visit www.nationalMSsociety.org/get-involved/take-action/index.aspx
  2. Take Action and sign up to receive federal and state alerts
  3. Recruit a friend!

Government Relations Committee

Volunteers Wanted!

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.