Families are asked to navigate systems that weren't built for them.
When families work to make their homes accessible, they are confronted with overwhelming hurdles. Outdated systems, mountains of paperwork, limited funding, long waiting lists and conflicting information make changes feel impossible. Every time the system fails to provide families with the home modifications they seek, they face on-going threats to health, safety, socialization and well-being.
“A lot of times, families have no idea what resources are out there. There’s, I think there’s a panic level that hits for families; they’re overwhelmed. When we ask them to look into something or give them a phone number to call, it becomes one more thing they have to do. And they’re just like, “Oh my god, I cannot make one more call.”
Leader from a maryland advocacy group
Even With the Gaps,
Families Find a Way Forward
Turning a home modification from an idea into something real takes persistence, planning, and the right support. Even when systems are slow or confusing, families piece together their own paths — guided by professionals, advocates, and their deep understanding of what their child needs day to day.
1. Assessing Environments
How do families identify needs and find help?
Some families are fortunate to work with professionals who understand home modifications, such as occupational therapists, physical therapists, nurses, or independent living specialists. They talk with the family and may visit the home to recommend changes, which can get written up in a report to submit for funding approval. Other families are dependent on advice from parent-to-parent networks or their own ingenuity.
2. Raising Funds
How do families pay for modifications?
Home modifications can be expensive, so families explore options like Medicaid or private insurance, waiver programs, low interest loans, assistive technology programs, centers for independent living, other state agencies/programs, non-profits, and community organizations. Some families also use savings or support from friends and relatives to cover costs that aren’t covered.
3. Modifying Homes
How do modifications get built?
Contractors carry out the work — building ramps, widening doorways, installing grab bars, and more. Contractors, especially those experienced with home accessibility, can be difficult to identify. Some funding programs require bids from multiple contractors before approving the project. Medical equipment companies, or donated equipment reuse programs, can supply durable medical or adaptive equipment.
What's Needed to Fix This
The United States has the foundation to lead the way — world-class hospitals, passionate disability advocates, innovative agencies, and strong policy leaders. To make home modifications faster, fairer, and accessible for all, we need:
ACCESSIBLE INFORMATION
Clear and centralized guidance so families know where to start and what's possible
STREAMLINED PROCESS
Fewer approvals, simpler forms, and wait times measured in weeks, not months
SUSTAINABLE FUNDING
Programs that reflect actual costs and adapt to diverse family needs
FAMILY SUPPORT
Guidance and advocacy from assessment through completion
CROSS-SYSTEM WORK
Real coordination between health, housing, education, and disability services
