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Long Term Services & Support

People living with MS need access to high-quality, affordable long-term services and supports that meet their needs, and help them remain independent and avoid financial hardship.

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What We Are Trying to Accomplish

  1. Protect Medicaid and reject proposals to block grant, institute per capita caps or significantly cut the program so that people with MS have access to the health and long-term services and supports they need.
  2. Protect and improve access to Durable Medical Equipment (DME) and Complex Rehabilitation Technology (CRT) and related “accessories” so that people with MS can remain healthy and independent.
  3. Provide family caregivers with adequate financial, emotional and practical supports including care management, counseling, training and respite care.

Why It’s Important

  1. Medicaid is the only public healthcare program that covers all aspects of long-term care, including home health services, personal care services, other home- and community-based services and nursing facility services. Approximately 20-25 percent of individuals with MS will need long-term services and supports at some point, and approximately 5-10 percent will require residential care. People with MS need choices across the full range of age-appropriate and affordable home-based, community- and facility-based health and social service options to meet individual needs and preferences.
  2. Some people with MS rely on assistive technology and/or medical equipment like wheelchairs to remain healthy, independent and active. CRT are medically necessary and individually configured manual and power wheelchairs and seating and positioning systems for those with progressed MS. Many times, CRT products have “accessories”—such as tilt-and-recline systems and customized seat cushions—that make the chair usable and beneficial.
  3. Family members are often the primary providers of care, support and assistance to their loved ones. Family caregivers are essential to keeping loved ones at home for as long as possible, but providing 24 hours of care per week on average can have negative ramifications (64 percent of MS caregivers report feeling emotionally drained; 32 percent experience depression; 22 percent have lost a job due to caregiving responsibilities). 

Happening at the National Level

  1. Medicaid: There are proposals to block grant or place per capita caps in the program—both of which the Society opposes. Under either of these models, state-run Medicaid programs would receive a fixed amount of federal money, shifting costs to states and likely leading to service or eligibility cuts. Medicaid currently operates as a federal-state match, with each putting in a percentage of costs to operate the Medicaid program. If costs to the program are higher than anticipated, than both the federal and state governments are required to increase their proportional share.
  2. CRT and Related Accessories: 
    • In late June 2017, the Centers for Medicare and Medicare Services issued guidance that averts significant cuts and protects access to power CRT accessories. This was a significant victory achieved through MS advocacy, coalition partnership and bipartisan support. H.R. 3730 has been introduced in Congress to protect access to manual CRT accessories. 
    • The Ensuring Access to Quality Complex Rehabilitation Technology Act (H.R. 750) which would create separate recognition for CRT, promote community living by exempting CRT from Medicare’s “in-the-home” policy and enhance quality standards for CRT products.
  3. Family Caregivers: The Society urges the passage of:
    • The Lifespan Respite Care Program provides grants to states to maximize existing resources and better coordinate and deliver quality respite services to family caregivers. The Society urges $5 million for the program in Fiscal Year 2018 and Congress to reauthorize the program.
    • The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act (S. 1028/H.R. 3759) which would develop, maintain and update a national strategy to recognize and support family caregivers beginning with an advisory body of representatives from the private and public sectors, and relevant federal agencies. This advisory group would identify specific actions that communities, providers, government, employers and others can take to recognize and support family caregivers; this action plan would be updated annually. The Senate passed the RAISE Act on September 26, 2017 and it is now before the House of Representatives.
    • The Credit for Caring Act (H.R. 2505/S. 1151) which would provide a tax credit up to $3,000 to support caregivers and caregiving-related needs such as assistive technology, home modifications and respite care.
    • The In-Home CARE Act (S. 1606) which would provide grants to states and entities to conduct home visits and comprehensive caregiver assessments to make recommendations for supports like respite, education and training and home modifications.

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