Skip to navigation Skip to content

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.

Take Action Now

Share

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: The Society urges passage of:
    • The Ensuring Access to Quality Complex Rehabilitation Technology Act 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.
    • Another bill which would protect access to CRT accessories by clarifying that CRT manual and power accessories are to be paid at traditional, non-competitive bidding rates. Congress passed protection of CRT power accessories through June 30, but passage of the bill is needed for permanent protection.
  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 $4 million for the program in Fiscal Year 2017 and Congress to reauthorize the program.
    • The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act 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. 

Take Action Now

State Information

Interested in taking action nearby? Simply filter by state and see what you can do in your area.

Share