This spring marked a big milestone in our family; it was our daughter Claire’s second anniversary in her shared living townhouse. Yet the journey to get to this point started many years before.
When Claire was young, I’d often hear stories about adults with developmental disabilities who live their entire lives with their parents, only to have their world turn upside down when their parents pass away or become too old to care for them. I vowed not to let that happen to Claire, who is now 28 and falls in the middle of the autism spectrum. While she is able to do many things independently, like ride the Metro bus to her part-time job and community activities, she has some language difficulty, behavior challenges, and tremendous generalized anxiety. We knew we’d need to find a living solution for her well before we reached our retirement years.
We were struggling to connect with the right people … to find a model that fit … for Claire and for us.
I began researching possible housing options about 10 years ago, struggling to find a model that would fit. Then a friend introduced me to her shared living solution, the first model I’d seen that could provide the right balance of supervision and independence, with access to the community activities Claire loves, while still being potentially affordable for our family.
After exploring one possible shared living situation that ultimately didn’t work out, we decided to create our own. After a bit of searching, we found the perfect location and bought a townhouse in the community where Claire grew up, attended school, and was familiar with the bus routes. The location was ideal -- walking distance to the transit center, shopping, Claire’s day program, movie theater, library, and a 10-minute drive to our family home. We closed on the purchase two and half years ago.
At the same time, we began to search for a partner family to share the journey. After a long search, we finally connected with the right family whose son proved to be a great match for our daughter. They had known each other for years through therapy programs, school, and extracurricular activities. And his mother was a good friend; we had worked together on nonprofit fundraising. Both Claire and her housemate work part-time, riding the Metro buses independently to work and attending the same day program and some shared activities. Most importantly, our family philosophies meshed in wanting our adult children to be out in their community while remaining safe.
The next big hurdle was finding a caregiver; thanks to our relationship with our exceptional housing consultant we had an incredible caregiver fall into our laps.
The next four months were a whirlwind of prepping our caregiver with information about my daughter and her roommate, furnishing the townhouse, finalizing contracts, setting up accounts, registering with a caregiver agency, meeting with our partner family, and introducing Claire to her new caregiver … all prior to telling Claire about the townhouse. Claire doesn’t deal well with uncertainty, so we wanted everything in place before we told her. Claire happily moved into her new home in April 2019 -- because “that’s what adults do” as she told us at the time. Her new housemate joined her in May.
Our shared housing solution is still a work in progress; we will likely need a second caregiver as we currently give ours a generous amount of time off. We enjoy having Claire with us on weekends and holidays, but we know this isn’t sustainable in the long run. A second caregiver of course brings up the issue of affordability, so that’s another unknown. I worry about having to replace a caregiver and potentially also Claire’s roommate and our partner family. I wear a lot of hats to make this solution work -- parent, guardian, caregiver, landlord, manager of accounts and benefits, shared living partner manager. Wondering how to divide up these roles in the future without dumping all the responsibility on Claire’s only sibling keeps me up at night.
The best advice I can give? Just start.
So what would I tell families just beginning to think about housing solutions? The best advice I could give is this -- just start. It is a daunting process, so start now meeting other families and attending workshops and webinars. And I highly recommend working with a consultant who knows their way around the system. We worked with Pam Blanton of Partners4Housing and it was the best decision I made.
Setting up this shared living home for Claire has been crucial to preserving my mental health. Many years ago on this journey with my daughter, I left my career as an Internal Medicine physician behind. I don’t regret that decision, yet I do admit to a bit of envy when I would see other parents become empty nesters and enjoying new adventures.
Now, thanks to Claire’s shared living home, I hold out hope for that next adventure!