My daughter is about to fall off the ‘disability cliff,’ and Medicaid might not be there to catch her | Perspective

When my daughter Leta was 5 years old, one of the few words she mastered, besides "mom" and "dad," was "home." Leta has a rare genetic disorder called CHOPS Syndrome. Words have never come easily to her.

The fact that "home" was part of her vocabulary at this young age — at a time when words expressed her most fundamental needs — speaks volumes about how much home's security, love, and peace have always meant to her.

For 10 years, Leta has been a student at Camphill Special School in Glenmoore. It's a place she happily calls home. But when Leta's 21st birthday arrives this summer, she will age out of educational services, and her choice of a home will become more restricted.

>> READ MORE: Falling Off the Cliff, Part 1: A Crisis for the Disabled

We are as prepared as any family can be for Leta's fall from the "disability cliff." (That's how the disability community describes what happens when people with disabilities age out of educational services.)

Thanks to the advice of a social worker at Leta's preschool, I put her on the waiting list for Medicaid waiver funding for adult support when she was 3. Even with 18 years' notice, Medicaid funding isn't guaranteed.

A few years ago, I began researching adult housing options, and discovered that federal and state waiver-based regulations offer a narrow definition of what constitutes acceptable living arrangements for people with disabilities.

>> READ MORE: Falling Off the Cliff, Part 2: Finding Good Help

Some families we know have found homes for their loved ones run by state-approved agencies and integrated into local neighborhoods.

These check the box for inclusion when it comes to where people with disabilities live. But they don't allow Leta to lead the life she loves at Camphill Special School. There, she is part of a community that values and supports her, happily working on the farm, painting ceramics, collecting chicken eggs, shopping at the local market, and helping cook dinner alongside friends and teachers.

Leta has the cognitive age of 5 or 6, still needs a booster seat, and never tires of trips to the zoo or listening to the Wiggles. She will never hold a job, and requires one-to-one attention in all aspects of her day.

But she still finds joy in belonging and having purpose. She still wants a home where she can do different things and have life in her days — not just days in her life.

>> READ MORE: Falling Off the Cliff, Part 3: Finding Work

Our country has come a long way in moving adults with disabilities out of institutions and insisting on inclusion in communities. Even so, there is much work to be done. The backlash against the abominable institutions of yesteryear has given way to institutional bias against any community outside of the mainstream.

As society strives to provide better choices for adults with disabilities, our goals should be fostering dignity, creating a sense of home and providing meaningful days, whether in a group setting, on a farm, or in a city apartment. When these goals are overlooked, lower-functioning adults with disabilities still live in extreme isolation, even when they are "included" in communities.

Likewise, funding must support an individual's right to choose what feels like home and embrace models that provide a genuine quality of life. Given the broad range of disabilities and personal preferences, it seems obvious the answer could never be one size fits all.

For the last two years, I've worked with several other parents of young adults with special need to found a home called Little Acorn House, which is planting the seeds of change in Kimberton.

>> READ MORE: Falling Off the Cliff, Part 4: Life After Death

Opening this summer, Little Acorn House is the home that Leta chooses. And it offers what many young people with disabilities want as they become adults: a safe environment, loving live-in caregivers, meaningful days, and exposure to people and events that enrich their lives.

I hope the journey to give Leta a home where she will flourish inspires a larger movement.

By recognizing our universal need for places that feel like home and reconsidering preconceptions about what that home should look like, we can nurture dignity, a sense of belonging, and whatever degree of independence and interdependence people with disabilities are able.

Lainey Moseley is a mother of four, a freelance news producer for NBC News, and founder of Little Acorn House. She writes about Leta's journey and her work to champion the rights of people with disabilities on her blog, savingleta.com.