Housing comes up constantly in conversations across the HIE community; how to organize the space you already have, when to renovate, when to move, and how to plan for a future you can't fully predict. So Hope for HIE brought three HIE parents together to talk through how they've actually navigated it.
MSW intern Kimberly Taylor hosted the session, with parent panelists Motti Eisenbach (also a Peer Support Mentor), Quanteria Williams-Porche, and Sarah Bell sharing what housing and home modification have looked like for their families. All three panelists are in the US. As Kimberly noted at the start, what's available varies by location; so their experiences are a starting point, not a universal roadmap.
We're sharing the key notes from the Peer Perspective Panel, along with a link to the full video on YouTube.
Each family's home looks different, because each child's needs are different.
As Motti put it, families are relying on each other, because "we don't know what we don't know." There's no template for navigating how to make spaces accessible in the way your specific child needs.
A recurring theme between the panelists was that the paperwork and approval process for home modifications is slow, even when the need is clear.
Quanteria's waiver-funded bathroom remodel took roughly a year from first request to completion, including getting quotes from multiple contractors, therapist sign-offs, and state review. Sarah's family began the process for a ceiling lift, bathroom remodel, and garage lift system months before they even closed on their house. The ceiling lift, ironically the lowest-cost item, generated the most pushback.
The advice the panelists gave was to begin the process before you think you need it. Equipment and needs change fast, and a child's current size is not a reason to wait.
Both Quanteria and Sarah went through county or state waiver programs to help fund home modifications. Both described a system that could move slowly and unevenly, and pointed to specific people along the way (a case worker, a contractor) who stepped in with information or product knowledge that made a real difference.
Quanteria named the pattern directly: navigating these systems means encountering real gaps, alongside people who genuinely try to help. Families are often the ones pulling together bids, coordinating therapist documentation, and tracking down someone who understands what their child's home actually needs to look like.
For families managing medical equipment, storage isn't just about tidiness; it's about safety and speed in an emergency.
Across all three families, a few practices came up:
Sarah summed up a feeling several families share: home organization isn't a one-time project. As a child grows and equipment changes, the system keeps evolving with them.
For families with children who use ventilators or have significant medical needs, proximity to care and backup power aren't afterthoughts. They factor into where a family chooses to live at all.
When asked what they'd tell a family just starting to realize their home needs to change, the panelists offered a few things worth holding onto:
Thank you to Motti, Quanteria, and Sarah for so generously sharing your personal experiences and insights in this Peer Perspective panel. Your voices bring connection, understanding, and real hope to families navigating HIE and housing considerations together.
To watch the full Peer Perspective Panel or to read our key takeaways at a glance, click the buttons below!
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