ALS Association Fights for Greater Support for Family Caregivers

family caregivers

Today, we filed comments with the Family Caregiving Advisory Council supporting legislative and other policy changes to support family caregivers. This groundbreaking report was developed by a committee of caregiving organization and federal organizations to provide detailed ideas on how our country can improve care for our loved ones by supporting our family caregivers. The report was released earlier this year. We offered additional consideration to the Council to address the daily concerns of family caregiving for people with ALS.

The Family Caregiving Advisory Council was established by a federal law passed in 2018 to support the creation of a strategy to support family caregiving. In September, the Council issued its preliminary report on the state of family caregiving, including 26 recommendations on how to support family caregivers better and asked for public comments to be submitted by November 30.

Although people with ALS qualify for the Medicare home health benefit, they are often denied care because their care is more expensive than Medicare’s reimbursement. Many people cannot afford to pay for private duty care because the average cost runs about $15,000 a month. The cost of private care affirms why family caregivers are the backbone for care for people living with ALS.

In our comments we focused on three key issues to support family caregivers in the ALS community.

  • Update the Medicare Home Health Benefit: While people with ALS often qualify for the Medicare Home Health benefit, they are often rejected during the intake process. This is because the Medicare home health reimbursement system discriminates against people with ALS and others who are more costly than the average Medicare home health beneficiary. The Medicare Home Health benefit should be updated to ensure access for people with ALS whose costs may exceed the average cost.
  • Expand community based long term care options. The community needs expanded access to community long-term care, respite care including training for caregivers, support to pay for home modifications and paid leave for family caregivers. In addition, the Family and Medical Leave Act should be expanded to include small employers, and the definition of “family” in FMLA should be expanded to include grandparent and kin caregivers.
  • Ensure health care insurance for family caregivers and their children. For people with ALS who choose Medicare as their health insurance provider, spouses and children may have to secure alternative health insurance. For ALS spouses and children, they should have continued insurance coverage covered either under Medicaid or through subsidized insurance under the Affordable Care Act.

To file comments with the Family Caregiving Advisory Council, go here.


Submitted by: Debra D. on Thu, 01/05/2023

I am the primary care giver for my husband who has ALS. We receive no benefit from Medicare for any caregiving and are seniors on a fixed income. Paying for private caregiving is a financial struggle. We appreciate the 20 hours per month Respite Care reimbursement from the Michigan ALS Association. However, I believe most caregivers are entitled to more than 20 hours of “mental health” care per month!!

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