For many families affected by Ataxia, becoming a caregiver isn’t something that happens all at once. It happens gradually through driving to more appointments, helping with mobility, researching treatments, navigating insurance, modifying a home, managing medications, or simply making sure a loved one can safely participate in everyday life.
Over time, those responsibilities can become a significant part of a caregiver’s life.
During the National Ataxia Foundation’s Caring for Caregivers: Federal Advocacy in Action webinar, family caregivers shared what that experience really looks like. Their stories highlighted not only the love and commitment involved in caregiving, but also the financial, physical, emotional, and administrative challenges families often face.
They also highlighted an important opportunity: caregivers can use their experiences to advocate for policies that better recognize and support the work they do.
Caregiving Is a Journey
For Melinda Richard, whose two youngest children have Friedreich’s Ataxia, caregiving evolved naturally from being their mother.
After her son was diagnosed, she immersed herself in learning about the disease. Soon, she found herself filling many roles of researcher, appointment coordinator, transportation provider, caregiver, and eventually advocate.
“I transitioned from mom to caregiver to researcher to appointment maker to traveler,” she explained.
Sue Moore described a similar evolution while caring for her husband, who has SCA3. Because Ataxia is progressive, caregiving responsibilities have changed gradually over time. Bill eventually stopped driving and began using mobility devices, and the couple moved from their long-time home to one that could better accommodate his needs.
The incremental nature of those changes can make planning difficult.
Caregivers may realize they need a home modification, new mobility device, accessible vehicle, or additional assistance only after the need has become urgent. Thinking ahead can be emotionally difficult, but it can also help families prepare for future changes.
The Costs Extend Far Beyond Medical Bills
The webinar participants repeatedly returned to one issue: caregiving can be expensive.
Families described paying for or contributing toward:
- Mobility devices and adaptive equipment
- Home modifications, including ramps, grab bars, wider doorways, and accessible bathrooms
- Travel to specialists and medical appointments
- Hotels and meals associated with medical travel
- Physical and occupational therapy
- Accessible transportation and vehicles
- Home maintenance and tasks a loved one can no longer perform
- Medical expenses not fully covered by insurance
Caregiving can also affect income and retirement savings.
Melinda shared that she is no longer able to work because of her children’s needs. Sue discussed the financial impact of her husband retiring at age 52 and her own decision to retire early. Sharon Hardel explained how caregiving responsibilities affected the types of jobs she could realistically pursue because she needs flexibility to take her husband to appointments and cannot comfortably leave him alone for extended periods.
These stories demonstrate why the financial impact of caregiving cannot always be measured simply by adding up medical bills. Lost wages, reduced retirement savings, time away from work, and career changes can have consequences that last for years.
Accessibility Affects the Entire Family
Accessibility was another recurring theme.
Something as simple as visiting a friend or family member can become complicated when there are stairs or inaccessible bathrooms. Travel may require accessible hotel rooms, but caregivers described finding that the term “accessible” can mean very different things from one property to another.
Transportation creates another challenge. Mobility devices can be heavy and difficult for caregivers to load into vehicles. Eventually, some families may need an accessible vehicle or lift which is another potentially significant expense.
As Sue explained, these practical considerations ultimately affect whether families can continue to participate in their communities.
The goal is not simply mobility. It is being able to “still be out in the world.”
Navigating the System Is Work, Too
Caregiving isn’t limited to physical assistance.
Family caregivers frequently become advocates and case managers, navigating insurance, Medicare, Medicaid, disability benefits, rehabilitation services, and other systems.
Sharon described appealing a Medicare decision after her husband broke his arm and needed rehabilitation. Although he was not necessarily demonstrating continued improvement through therapy, she felt he still was not ready to return home safely. After multiple levels of appeal, the family ultimately paid nearly $7,000 out of pocket for two additional weeks of care.
Situations like these illustrate another hidden cost of caregiving: time spent navigating complicated systems and fighting for needed services.
Caregivers may spend hours completing paperwork, making phone calls, documenting medical needs, appealing decisions, and trying to understand eligibility requirements—all while continuing to provide care.
Federal Policies Could Help
The webinar also highlighted several federal proposals intended to address some of these challenges.
The Alleviating Barriers for Caregivers Act would require certain federal agencies to review their eligibility processes, forms, procedures, and communications with the goal of reducing unnecessary administrative burdens on family caregivers. Importantly, the legislation would also incorporate caregiver input into efforts to improve these processes.
The Catching Up Family Caregivers Act focuses on the long-term financial impact of caregiving. It would provide qualifying family caregivers additional opportunities to make catch-up contributions toward retirement after years in which uncompensated caregiving may have limited their ability to save.
The Credit for Caring Act would provide an up to $5,000 federal tax credit for qualifying working family caregivers with eligible caregiving expenses.
Although these proposals address different aspects of caregiving, they reflect a common principle: supporting a loved one should not require caregivers to sacrifice their own long-term financial stability.
As Melinda put it during the webinar, “We shouldn’t have to become financially vulnerable simply because we’re taking care of somebody we love.”
More Support Is Still Needed
Financial assistance alone won’t address every caregiving challenge.
Panelists identified additional needs, including support for home modifications, accessible transportation, mobility equipment, clearer accessibility standards, rehabilitation and therapy intended to maintain function, and assistance that helps people with Ataxia remain safely in their homes.
Audience members also raised an important issue for renters. Families who don’t own their homes may have less ability to make accessibility modifications, creating another barrier to safe and independent living.
Local resources vary significantly. Families looking for assistance may want to explore their local Center for Independent Living, Aging and Disability Resource Center, state disability agencies, and other community organizations. Congressional offices may also be able to help constituents identify federal, state, or community resources and navigate federal benefits.
Your Caregiving Story Can Be a Powerful Advocacy Tool
One of the clearest messages from the webinar was that caregivers don’t need to be policy experts to advocate effectively.
Congressional staff participating in the webinar encouraged caregivers to contact their elected officials and explain how policies affect their everyday lives. Personal stories help lawmakers understand what statistics alone cannot show.
If you’ve spent hours navigating benefits paperwork, tell them.
If you’ve reduced your work hours to provide care, tell them.
If your family has paid thousands of dollars for a mobility device, accessible vehicle, home modification, or rehabilitation services, tell them.
And then explain what could make things better.
Personal experience paired with a specific policy solution can be a powerful advocacy message.
Caregivers Deserve to Be Seen and Supported
Perhaps one of the most important points raised during the webinar was how we talk about caregiving.
People with Ataxia are not burdens.
Rather, caregivers and families can encounter burdens because healthcare, transportation, financial, accessibility, and social-support systems do not always adequately meet their needs.
Family caregivers perform essential work often around the clock and frequently without compensation or formal recognition. Supporting caregivers ultimately helps people with Ataxia remain safer, more independent, more connected to their communities, and better able to live the lives they choose.
As Melinda reminded attendees, caregiving is work: “We work full-time…24 hours a day.”
By sharing their experiences and advocating for better policies, the Ataxia community can help make that work more visible and help build systems that better support both caregivers and the people they love.
