Massachusetts Legislative and Other Policy Priorities for 2011-2012 Session
- Home LINKS
- Prescription Drug Coupons
- Prescription Fee Practices
- Architectural Access Board
- Accessible Housing
- Spousal Waiver
- Health Care Cost and Quality
- Air Conditioning and Heating Regulations
- Power Door Openers
- Paratransit Commission
- Respite Care
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
H2 / MS Society Home LINKS—An act making an appropriation for Fiscal Year 2013, Line Item 4513-1111. The language for Home LINKS is included in the budget line item amount $3.343 million, a decrease of $57,000 from 2012. The Massachusetts Department of Public Health has allocated $75,000 for Home LINKS. This is a great victory for the Greater New England Chapter given the decreased funding for 2013.
1) H2352 H2383 S548 / An act relative to prescription drug coupons - The fiscal year 2013 budget also included the prescription drug coupon language. This language allows co-pay assistance programs for medications with no generic version. This legislation can help patients afford increasing co-pays and co-insurance for brand name prescriptions. Massachusetts will join the 49 other states to permit patient pharmaceutical assistance programs. The Greater New England Chapter has worked for four years to get this legislation passed. Another victory!!
2) 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. These costs can amount to thousands of dollars a month and limit access to vital, life-saving medications.
Committee: Assigned to Senate Committee on Ethics and Rules
Status: The bill will be refiled for the 2013-2014 legislative session.
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. In Massachusetts the AAB only has jurisdiction on places open to the public; it does not extend to employee spaces. The Americans with Disabilities Act (ADA) does extend to employee spaces. The ADA regulation, however, requires an employee to request a reasonable accommodation or to file suit to request an accessible workplace.
Committee: Joint Committee on Public Safety and Homeland Security
Status: The Greater New England Chapter provided testimony to House Ways and Means in support of the bill with the AAB amendments.
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: House Committee on Bonding, Capital Expenditures and State Assets
Status: Testimony was submitted to the Joint Committee, Capital Expenditures and State Assets in support of the new draft of the bill.
5) S550 / An Act relative to spousal waiver for home and community-based services for physically disabled adults age 60 and under. – This bill requires the Massachusetts Division of Medical Assistance to apply to Center Medicare & Medicaid Services for a spousal waiver by requesting an amendment to an existing 1915(c) home and community -based waiver or 1115 state waiver that pertains to adults under 60 with progressive physical disabilities who meet criteria for nursing care.
Status: This is a refile of last year's bill (S582). The bill died in a study order.
6) H4127 S2270 / An Act relative to Health Care Quality Improvement and Cost Reduction Act of 2012 - Comprehensive bill to reduce the cost of health care, includes the following elements: a new, quasi-governmental agency called the Division of Health Care Cost and Quality would oversee the transition to a new payment and delivery system with a board including consumer, government and industry representatives; establishes a specific cap for health-care spending that would be linked to the Gross State Product -5%; authorizes imposition of a possible 10% tax on hospitals if they charged more than 20% of the state median price for a given service; gives greater prominence to Accountable Care Organizations; requires electronic health records for all providers by 2017; requires greater disclosure of out-of-pocket costs to patients up front; requires the establishment of “patient-centered medical homes” so that patients could have a single point of coordination for all types of care; creates 180-day cooling off period in medical malpractice; establishes "smart tiering" which allows patients to pay more for more expensive services; increases MassHealth rates paid to providers; authorizes loan forgiveness to primary care doctors who practice in rural or underserved areas.
Status: This bill was passed by the legislature.
Other Public Policy Issues of focus:
The chapter is working on an issue concerning the residential “heating season” regulations, which govern when landlords, property owners and building managers are required to provide heat to its residents. By law, they must provide residents with access to heat during the “heating season”, which ends on June 15. For many residents the building’s heating system remains on until June 15th and they are unable to access to air conditioning until after June 15th. Similarly, the heat must be available to residents on September 15th and they may not have access to air conditioning after that date.
This becomes an issue when unseasonably hot weather occurs. There were days last spring, prior to June 15th, when the temperature climbed above 80 degrees. Residents were left coping with temperatures of 90+ in their apartments. Residents faced the same challenges in the fall, after September 15th when the temperatures climbed into the 80’s. As the weather is getting increasingly warmer, this becomes a real health concern. In 2011 and 2012, disability activists met with the Department of Public Health (DPH) to highlight this issue and the adverse impact that the current regulations are having on residents with MS and other chronic illnesses as well as elders and children.
As a result of these meetings, DPH has proposed changes in the Sanitation Code to address this issue. The goal is to amend regulations to provide local boards of health with a more flexible waiver process. The new regulation allows boards of health to issue a waiver in light of a high temperature forecast, allowing property owners to turn on the air conditioning. The other change is to end the heating season on May 31 rather than June 15.
To address the situation in the near term, disability advocates worked in collaboration with DPH to send a letter from the Commissioner of DPH to all 351 city/town localities to clarify existing regulations. The letter explained that property managers are able to provide air conditioning during the heating season prior to June 15th. In fact, building owners can keep air conditioning systems on all year round so long as heat is also available during that time. The chapter also sent this letter to local Disability Commissions in the state to make them aware of this issue.
Status: Because the proposed changes in the Sanitary Code could impact other building codes, the Building Code Coordinating Council must first clear the proposed regulatory changes of any conflict. After the regulatory changes are cleared, these changes are then proposed to the Public Health Council and voted upon. Upon approval of the Public Health Council, the code changes are published for public hearing and comment.
MS 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. Joann was instrumental in getting the Greater New England Chapter involved in proposing 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 Public Policy Advocacy at the chapter, presented the proposed change to the Massachusetts Architectural Access Board Subcommittee. 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 in July 2011. This code change must now be approved by the full board of the AAB. The AAB is in the process of rewriting the building code book and has not yet reached the section where this proposed change will be included.
The approval process by the Commonwealth for building code changes begins with the Building Code Coordinating Council. The AAB has presented the sections of the rewritten code book that have been approved by the full AAB Board to this council. This process is currently stalled.
Status: The chapter will send a letter to members of the Building Code Coordinating Council to elevate this issue and make them aware of the importance of these building code changes for people with MS and all individuals with disabilities. Waiting for another person to open the door or maneuvering to open a door with great hardship is not “equal access”.
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
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 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
2012 Update on MLRC Activities
Supplemental Funding for Respite Care Services
In September 2012, the Massachusetts Lifespan Respite Coalition (MLRC) was awarded a grant for supplemental funding to provide high quality respite care services to meet the needs of underserved populations and address service gaps in Massachusetts.
In March 2013, the MLRC awarded $10,000 mini-grants each to the B.Fit! Program at The Boston Home; the Oak Square YMCA in Brighton; and the Hockomock YMCA in Attleboro to increase capacity for their innovative respite care programs. These programs provide respite care services for people with MS that benefits both the care recipient and the caregiver. This project represents a bold and necessary step to connect stressed families and friends with respite care services.
Contact Amy Nazaire, Massachusetts Lifespan Respite Coalition Project Director with any questions at firstname.lastname@example.org.
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 email@example.com.