National Multiple Sclerosis Society
Ensure that Congress provides funding for MS research and the U.S. Food and Drug Administration so that we can stop disease progression, restore function, and end MS forever.
The Ensuring Access to Quality Complex Rehabilitation Act creates a separate benefit category under Medicare for complex rehabilitation technology (CRT), protecting access to these customized products so that people with significant disabilities can have their medical needs addressed and remain independent.
Caregivers of people with MS spend about 24 hours a week providing care. Of these caregivers, 64% are emotionally drained, 32% experience depression and 22% have lost a job due to caregiving responsibilities. The Lifespan Respite Care Program helps states better coordinate and deliver quality respite care that improves the health of family caregivers and allows the person living with MS to continue living at home.
The U.S. Senate should ratify the United Nations Convention on the Rights of Persons with Disabilities to affirm the rights of Americans with disabilities--including veterans--working, traveling, studying and living abroad.
Medicaid provides comprehensive health coverage to nearly 9 million non-elderly people with disabilities and to 10 million low-income Medicare beneficiaries who rely on Medicaid to fill Medicare’s gaps including many people living with MS. Medicaid is a true safety net for people with MS as MS is one of the most expensive chronic diseases and people with MS are often forced to stop working because of their disease.
Lack of public information on the price of healthcare services, the paperwork required to attain care, and insufficient notification of benefit changes contribute to the burden of living with MS.
People with multiple sclerosis (MS) have a variety of healthcare needs including neurological symptoms, emotional and psychological issues, rehabilitation interventions to enhance mobility and independence and long-term care. These healthcare needs vary dramatically person to person. Every person with MS needs meaningful access to a comprehensive network of providers to meet his or her unique needs.
Partnerships and the relationships that result allow us to be at the table when decisions are being made and advocate for changes that have a positive impact on the lives of those with MS.
The Massachusetts state budget Line Item 4513-1111 funds the Department of Public Health’s (DPH) prevention and disease management programs including, but not limited to, the Multiple Sclerosis Home LINKS program administered by the Greater New England Chapter of the National Multiple Sclerosis Society.
Senate bill 1869 extends the jurisdiction of the Massachusetts Architectural Access Board (AAB) to make it coextensive with the Americans with Disabilities Act (ADA). The bill would update the AAB’s jurisdiction where it falls short of ADA standards (AAB does not cover employee-only spaces that are covered by ADA). This change also provides for federal certification of the AAB code, meaning building owners and designers can ensure federal compliance when meeting state regulations.
Many people with MS rely on accessible transportation known as The MBTA Ride. On April 6, 2011 Governor Patrick signed Executive Order 530 which established a commission that examined and provided recommendations to improve and reform Para transit transportation services. Linda Guiod, Executive Vice President of Chapter Programs, Services and Advocacy, was sworn in as a member of this commission.
House Bill 2057 establishes standards for the minimum technical criteria for medical diagnostic equipment used in physician's offices, clinics, emergency rooms, hospitals, and other medical settings. The standards shall ensure that this equipment is accessible to, and usable by, individuals with disabilities, and shall allow independent entry to, use of, and exit from the equipment by these individuals to the maximum extent possible.
Senate bill 564 would require the Massachusetts Division of Medical Assistance to apply for a spousal waiver by requesting an amendment to an existing 1915 (c) home and community-based waiver for physically disabled adults who meet criteria for nursing level care. Concurrently, the Chapter is pursuing a pilot program to waive the income for married people with MS who are severely disabled.
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.
House bill 136 requires Massachusetts to set standards for recruiting, hiring, and reporting on employment of people with disabilities on all multi-year vendor contracts.