Caregiver support programs - ALS

Support for caregivers of people with Amyotrophic Lateral Sclerosis (ALS) – Senator Tomassoni Caregiver Support Program

In 2022, the Minnesota Legislature appropriated $25 million to support Minnesotans living with Amyotrophic Lateral Sclerosis (ALS) and the family, friends and neighbors caregiving for them. This bipartisan legislation, introduced by the late Senator David J. Tomassoni, elevated issues many Minnesotans were unaware of including:

  • ALS is a nervous system disease that affects nerve cells in the brain and spinal cord. It is a progressive disease which causes loss of muscle control.
  • The exact cause of the ALS is not known. About 400 people in Minnesota have ALS and nationally there are 30,000 individuals with ALS. The average age at diagnosis is 56 years old and the average life expectancy after diagnosis is two to five years.
  • ALS often begins with muscle twitching and weakness in an arm or leg, trouble swallowing or slurred speech. Eventually ALS affects control of the muscles needed to move, speak, eat, and breathe. There is no cure for ALS.

Many families impacted by ALS do not have the financial resources to bring in the care they need to support the individual at home during this aggressive disease timeline. While there is a network of certified ALS clinics and disease-specific organizations available to offer resources and guidance, the experience is challenging and often devastating.

ALS Legislation in Minnesota

The 2022 legislation has strengthened the network of support for individuals with ALS and their family and friend support systems. Minnesota Legislature. (2022). Session Law, Chapter 42: Appropriations for ALS caregiver support. 

The statute specified that $5 million of that funding should be used for caregiver support programs, including ALS specific respite services and specified that the services should follow the rules and guidelines of the National Family Caregiver Support Program (NFCSP). The NFCSP is funded through the federal Older Americans Act (Title III-E) and is distributed through the Minnesota Board on Aging (MBA), to area agencies on aging who contract with providers across the state to provide services.

Programmatic support

MBA designated the Arrowhead Regional Development Commission’s (ADRC), Arrowhead Area Agency on Aging (AAAA), to administer ALS funding. AAAA issued a request for proposal and ultimately contracted with the Minnesota chapter of the ALS Association (ALSA) to:

  1. Promote caregiver support programs that serve Minnesotans in their homes and communities
  2. Provide within limits of available funds, the caregiver support services that enable the family caregiver to access caregiver support programs in the most efficient manner,
  3. Provide information, awareness, education and training to inform caregivers and volunteers about caring for, managing and coping with care for a person with ALS.

Funds were also available to coordinate respite for Minnesotans caring for someone with ALS.

Senator Tomassoni Caregiver Support Program

ALSA named the respite program supported by this funding, the Senator Tomassoni Caregiver Support Program, in honor of the late state senator. ALSA staff work to identify and assist caregivers who need respite support to access respite funds by:

  • Hiring someone privately and utilizing a Fiscal Management Service (FMS) to coordinate payment and employment-related tasks; or
  • By contracting directly with a homecare agency to provide care.

In 2024, legislation was amended to authorize MBA to directly allocate funds for the program, along with an additional one-time appropriation of $2.5 million. Under the updated statute, caregiver support service funds must be used to reach family caregivers of people with ALS, including those under age 60, and must be used to provide social, community-based services and activities that provide social interaction for participants. The funds may also be used to provide respite care. Minnesota Legislature. (2024). Minnesota Statutes § 256.9755.

Progress reports

MBA, in collaboration with ALSA, submits a yearly progress report to the legislature.

The 2024 and 2025 progress reports can be found at Minnesota Legislative Reference Library: Progress Report: Funding for Support for Caregivers of People with Amyotrophic Lateral Sclerosis (ALS)