When ALS enters a household, it brings more than a diagnosis — it brings significant financial strain and nonstop caregiving demands. For families facing ALS, the cost of care can feel as relentless as the disease itself. Luckily, there are resources that can help.
ALS United Rocky Mountain is one of 15 independent ALS United organizations nationwide dedicated to helping people with ALS live their lives to the fullest. Started 30 years ago by a family impacted by ALS, ALS United Rocky Mountain now serves over 600 families annually in Colorado, Utah, and Wyoming by providing dozens of free programs and services.
“Our mission focuses on research, care services and community involvement,” says Megan Frisk, Senior Director of Care Services for ALS United Rocky Mountain. “We are always looking for grant funding to support our work, and every dollar awarded goes directly toward our programs.”
Thanks to ALS United’s collaborative approach, the Rocky Mountain organization learned about the Christopher & Dana Reeve Foundation Quality of Life Grants through ALS United Greater Chicago. In 2024, ALS United Rocky Mountain received a $30,000 grant to create a Caregiver Support Program to address the financial burden of in-home care.
“Caregiving for those with ALS is a significant expense, and many families struggle to afford the necessary in-home support,” says Frisk. “This program provides financial reimbursement to assist with caregiving costs, helping families maintain a better quality of life”.
At an estimated $45-60 per hour, many families choose to forgo in-home help, often leading to caregiver burnout. The Reeve Foundation grant will enable 30 families to receive $1,000 toward in-home care services, which covers about 24 hours of help.
“For an individual with ALS, caregiver support is often needed around the clock. Home care gives exhausted caregivers a much-needed break to run errands or focus on their own self-care,” says Frisk. “It also gives the person with ALS an opportunity to engage with a new person.”
In-home care providers can also help with daily needs such as mobility support, personal hygiene and medical assistance. Another benefit is that families who use home care can keep their loved one at home and in their local community, potentially avoiding the need to go into a skilled nursing facility.
ALS United distributes the support on a first-come, first-served basis through a simple application process. In a pre-program survey, 90% of caregivers reported being extremely stressed, primarily due to financial strain and limited access to help.
“Caregivers often don’t realize how much they need help until they are connected to support; they don’t realize how burned out they really are,” says Frisk. “For the person with ALS, it is nice to have someone new to talk to or play cards with, which can lead to a new friendship.”
One caregiver who benefited from this program noted, “I can’t express how much this meant to us. It gave me the flexibility to get Christmas shopping done, and he genuinely enjoyed the time and companionship.”
In-home care for ALS is an out-of-pocket cost not covered by insurance unless an individual is on Medicaid or is a military veteran. Often, families don’t have the resources to pay for these services up front, and the grant allows ALS United to pay a home care company directly.
“Just a couple hours of in-home care a week can be so beneficial,” says Frisk. “This grant helps remove the barrier to getting started with home care. We are also able to offer referrals to help families find providers more easily.”
The new Caregiver Support Program is a great addition to the comprehensive programs ALS United Rocky Mountain offers, including free medical equipment loans, a dozen support groups, monthly educational webinars and a personal care coordinator assigned to every family.
“We are so grateful for this Reeve Foundation grant,” says Frisk. “The opportunity to expand our impact by delivering in-home care support and financial relief helps families focus less on costs and more on care, dignity and time together.”
Learn more about our Quality of Life Grants program here.