Massachusetts Legislative and Other Policy Priorities for 2011-2012 Session
(Check back for periodic updates)
A white paper briefing: Facing Multiple Sclerosis in Massachusetts. This directory was produced for the Massachusetts legislature with information on our policy priorities.
State Budget Funding
H1 / MS Society Home LINKS—An Act making an appropriation for FY ’12, Line Item 4513-1111. The language for Home LINKS is in the State budget and is included in the line item amount $3.4 million, a decrease of $5.9 million from 2011. The Massachusetts Department of Public Health has allocated $75,000 for Home LINKS. This was a tremendous victory for the Greater New England Chapter given the decrease funding in the FY 2012 state budget.
State legislation
1) S455 / An act reforming prescription fee practices—An insurer shall not create specialty tiers that require payment of a percentage cost of prescription drugs. An insurer shall not establish tiers of prescription drug co-pays in which the maximum prescription drug co-pay exceeds by more than five hundred percent the lowest prescription drug co-pay charged under the health benefit plan. High cost specialty drugs are generally classified in tier 4, the highest and most expensive tier. As a result of the tier 4 drug formulary, patients with serious diseases such as multiple sclerosis, hepatitis, epilepsy, HIV/AIDS and others that require specialty medications are being asked to pay hundreds and even thousands of dollars for prescriptions to treat their diseases. Insurers are abandoning the traditional arrangement that has patients paying a fixed amount, like $10, $20 or $30 co-pay for a prescription, and instead are charging patients a percentage of the cost of certain high-priced drugs, usually 20 to 30 percent for tier 4. These costs can amount to thousands of dollars a month and limit access to vital, life-saving medications.
Committee Status: Assigned to Joint Committee on Financial Services
Hearing Date: 10/25/2011
2) H2352, H2383, S548 / An act relative to prescription drug coupons—This amends the prohibition against offering rebates or coupons for medicines or the use of certain medical devices to allow for the use of coupons or rebates for out-of-pocket expenses. Prescription discount programs are designed to hold down the cost of medications for patients and can encourage adherence to medications. By reducing the cost of a co-pay, for example, these discounts are designed to help patients afford to stay on medications that their doctor has decided are medically necessary (and their insurer has approved). Studies show that as out-of-pocket costs for patients increase, they are less likely to take their medication as prescribed. For example, patients may refill their prescriptions less often, take less medication than prescribed, skip doses, or not fill an important prescription at all. It is in the best interest of everyone that consumers refill their prescriptions and continue to take their prescriptions as directed by their physician (and approved by their insurer). This can lead to a reduction in long term healthcare costs. Massachusetts is the only state that does not allow the use of prescription drug coupons.
Committee status: Assigned to Joint Committee on Public Health
Hearing Date: October 4, 2011
3) S1246 / An act relative to the Architectural Access Board—Extends the jurisdiction of the Massachusetts Architectural Access Board (AAB) to make it co-extensive with the Americans with Disabilities Act, thereby permitting the AAB to seek certification of its regulations by the federal government, and allowing contractors to comply with both state and federal regulations by referring to a single set of provisions.
Committee status: Assigned to Joint Committee on Public Safety and Homeland Security
Hearing date: The hearing was on May 5, 2011. The bill was reported favorably by the Joint Committee on Public Safety and Homeland Security and referred to the Senate Ways and Means Committee on June 2, 2011.
4) H 3672 / An act promoting accessible housing for persons with disabilities—This is a new draft of H1557, S608 / An act relative to accessible housing for persons with disabilities. The disability community along with the MS Society strongly opposed this legislation as written. The prior legislation sought to create a funding program to support housing production and modification for persons with disabilities, elderly and homeless individuals or families, but it also proposed changes that would sacrifice accessibly removing the needed authority of the Massachusetts Architecture Access Board (AAB) under the auspices of aligning it with weaker federal standards. The new draft removes the language affecting the AAB’s jurisdiction and retains the language appropriating funds for accessible housing.
Committee status: The bill was reported favorably by the House Committee on Housing and referred to the House Committee on Bonding, Expenditures and State Assets
Hearing date: To be determined
5) S1080 / An act to create a genetic bill of rights—The Commonwealth recognizes that genetic information is a unique product of an individual’s body, the unauthorized use of which interferes with both privacy rights and property interests of that individual. It is hereby declared that it shall be a goal of the Commonwealth to declare genetic information the exclusive property of the individual from whom the information is obtained. It is a further goal of the Commonwealth to maintain an individual’s privacy by prohibiting the disclosure of said genetic information without the informed written consent of the person to whom the information pertains.
Committee status: Joint Committee on Public Health
Hearing date: April 11, 2011
Other Public Policy Issues of focus:
Air Conditioning and Heating Regulations
Janice Ward, member of the Boston Commission for Persons with Disabilities, brought to the attention of the Greater New England Chapter an issue regarding the Massachusetts heating and air conditioning regulations that affect people with multiple sclerosis and other disabilities. By law apartment management companies do not have to turn on the air conditioning until June 15th and can turn it off on September 15th. There were 5 days in April 2010 when the temperature was over 90 degrees. Many people in Massachusetts were unable to access their air conditioning before June 15th. The heat has a negative impact on people with MS and can exacerbate symptoms. As the weather is getting increasingly warmer, this becomes a real health concern. It can adversely affect the quality of life for people with disabilities as well as the elderly and children with asthma.
Janice rallied disability activists to testify at a public hearing in Boston that took place on March 4, 2011. The objective is to seek a change in the regulations so people can access their air conditioning in times of extreme heat. The Massachusetts Department of Public Health has it within their jurisdiction to change heating and cooling regulations. Currently there is no language in the regulations that addresses cooling issues.
Status: A follow up meeting took place at the Massachusetts Department of Public Health (DPH) on July 25, 2011 with Commissioner John Auerbach and Associate Commissioner Suzanne Condon. There were 13 disability activists that attended this meeting. As a first step, DPH will draft a letter to be reviewed by the participants at the meeting and it will then be sent to 351 city/town localities to clarify existing regulations and provide guidance to these districts. The regulations are more flexible than how they are being applied and the regulations should not be read so strictly. Apartment owners can turn on the air conditioning prior to June 15th as well as turn it on after September 15th during times of extreme heat.
Power Door Openers
Disability advocate Joann D’Amico Stone uses a scooter and she found over the past several years that there are buildings that she is unable to enter because there is no push button door opener and she is unable to reach the door handle to open it. As she said, “I feel like a dog waiting for its owner to let me in”. She took this issue to the Disability Commission in her town and they explained that the building codes do not mandate the use of power door openers at building entrances. Joann spearheaded this project and was instrumental in getting the Greater New England Chapter involved to propose a change to the Massachusetts building code. This amendment would mandate the installation of power door opener systems in new and renovated buildings. Individuals cannot fully partake of the rights and responsibilities of citizenship if they are unable to get through the door.
On July 28th 2010, Joann D’Amico Stone and Michelle Dickson, Director of Advocacy/Public Policy at the chapter, presented the proposed change to the Massachusetts Architectural Access Board Subcommittee. On July 28th, the Architectural Access Board (AAB) Subcommittee met to review the section of the building code where the chapter’s proposed change would be amended. This subcommittee reviews and updates the state building code (CMR520) that pertains to all accessibility standards including parking and buildings. The AAB Subcommittee voted unanimously to approve the amendment to the building code, mandating the installation of power door openers at one entrance for new and renovated buildings.
Status: The next step requires the full Board of the Architectural Access Board to vote on the amendment to the Massachusetts building code.
Commission for the Reform of Community, Social Service and Paratransit Transportation in Massachusetts
Governor Patrick issued an Executive Order to establish a commission of 16 members who will examine and provide recommendations to improve and reform community, social service and paratransit transportation services. This commission is co-chaired by Secretary Bigby of the Executive Office of Health and Human Services and Secretary Davey of MassDOT. Linda Guiod, Executive Vice President of Chapter Programs, Services and Advocacy at our chapter, was sworn in as a member of the commission. The first meeting was on Thursday, August 25th 2011.
Status: Six listening sessions were convened throughout the state that allowed the public to address their concerns, issues and recommendations to the commission. The Greater New England Chapter submitted testimony on Monday, November 14 concerning the existing barriers and recommendations to improve paratransit transportation.
- Executive Order 530 - Establishing a Commission for the Reform of Community, Social Service and Paratransit Transportation Services in the Commonwealth
Respite Care to Support Family Caregivers
What is Respite Care?
Respite care is a coordinated system that provides person-centered and community-based planned or short term relief to primary caregivers from the demands of the ongoing responsibilities of caring for an individual with special needs regardless of age, race, ethnicity, or situation. It allows caregivers to remain in the workforce and to delay or prevent institutionalization for their loved ones.
What is the federal government doing to support Respite Care?
In 2006, Congress passed Lifespan Respite Care Act, PUBLIC LAW 109–442. The act authorizes funds to states to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training.
What is Massachusetts doing to address the needs of family caregivers?
In April, 2010, parents, services providers for people with disabilities, children, older adults and state agency representatives came together to form the Massachusetts Lifespan Respite Coalition. Its mission is to promote and support access to quality respite care options that enhance the lives of individuals and families with special needs throughout the lifespan.
In September, 2010, Massachusetts received a three year grant from the Administration on Aging to:
- Further develop a statewide respite coalition
- Developing a comprehensive, accessible directory of services
- Expand the availability of Lifespan Respite Services in Massachusetts
In November, 2011, the MS Lifespan Respite Coalition sponsored “One Voice for Caregivers”, a tribute to family caregivers at the State House. One of the coalition’s key initiatives is to educate legislators, policy makers, and consumers. Read about an MS family caregiver.
What is the Greater New England Chapter doing about respite care?
We are an active partner in the coalition and serve on the Advisory Committee which oversees the implementation of the grant.
What can you do to help us determine the unmet needs of family caregivers? Respite is one of the services most frequently requested by informal caregivers to help them continue to provide at-home care. The MA Lifespan Respite Care Coalition would be interested in learning about the MS care giving experience. If you are a caregiver and have problems accessing respite care, please contact Ginny Morse at virginia.morse@nmss.org.
Massachusetts Legislative Priorities for 2009-2010 Session