In the vast possibilities of mothers’ nightmares is one that regularly haunts my dreams.

My daughter is missing. This time she is about 12. In a crowded auditorium, I search desperately, accosting strangers, imploring anyone to help me.

In all of these nighttime imaginings, I wake with a start. Lauren is safe and sound and asleep, and I can feel the panic ebb away.

But fear is not replaced by relief. What seeps into my consciousness is the hard reality that, while Lauren is at home, she remains a 32-year-old with autism spectrum disorder, lost in circumstances from which her parents cannot rescue her.

Like millions of children with disabilities now grown into adults, Lauren’s horizon bears little resemblance to one conjured up at high school commencements, futures filled with unrestrained opportunities.

Instead, what she and many like her face is often unemployment or underemployment and the real threat of homelessness. Despite college degrees and training programs that promised independence, Lauren is unable to find employment and housing on her own.

We are not alone in our experience. We’re part of a small support group of Hawaii mothers and fathers in their 50s, 60s and 70s seeking, with increasing urgency, workable and sustainable jobs and housing for adult children on the autism spectrum, all of whom are living at home.

These aging parents, and others whose adult children deal with intellectual or developmental disabilities, are keenly aware of their approaching mortality. The clock is ticking away.

National Needs

About 75% of people with intellectual/developmental disabilities live with a parent or other family caregiver, according to a 2019 report on disability housing by The Arc of the United States and The Council on Quality and Leadership. Over half of all caregivers are 50-plus years old and about 7% are 75 or older, reports the National Alliance for Caregiving and AARP in a 2020 update on caregiving.

The Arc study found an overwhelming number of people with intellectual/developmental disabilities want to live in their own homes and apartments. They look forward to learning new skills like cooking and cleaning, becoming more independent, seeing their friends when they want to and being treated with respect.

Families with resources can plan for this hopeful future. They can set up government benefits, trusts, guardianships and caregiver arrangements to cover the needs of their relatives.

But those who live in states where needed supports and programs are sorely lacking often are engaged in a hardscrabble search for what limited local help they can find. For parents without resources, living in communities with sustainable employment and independent, affordable housing is beyond a dream. It’s a fantasy.

Shortage Of Affordable Housing

WalletHub, the financial website, recently issued a study on the best cities to live in for those with disabilities. Of the 182 cities evaluated, Honolulu ranked 89th, weighed down by its high cost of living and housing.

Even with the safety net of Social Security benefits, living independently is unaffordable. The Technical Assistance Collaborative’s Priced Out report on housing for people with disabilities notes for those who receive $783 a month in SSI benefits, it would take 209% of that income to rent a one-bedroom apartment in urban Honolulu.

Vulnerable groups — the homeless, seniors, low-income, immigrants, impacted communities of color — encounter similar problems with housing availability and stiff competition for affordable homes.

But an ever-graying population, the continuing economic impacts of COVID-19 and our particular concern — the prevalence of autism that has risen to one in every 54 children — call for a different, at least renewed, look at how to better provide sustainable shelter for Hawaii’s most vulnerable communities.

Solutions From Elsewhere

Groups in states like Arizona, California, Florida, Texas and Michigan have created replicable models where those with intellectual/development disabilities can receive supported shelter, employment and socialization.

On one end are communities like First Place in Phoenix, Arizona, a 55-unit residential project that offers housing, help with residents’ transition to independent living, employment and integration into community life. This is not a cheap option: First Place leases a one-bedroom for $4,000 a month, including support for shopping, cooking, budgeting, daily living and transportation.

Then there are nonprofits like the Friends of Children with Special Needs, based in Fremont, California. FCSN began in 1996 as a support group of ten Chinese American families that went on to develop a community center and family-financed apartment project for adults with special needs.

Several of these projects are coupled with social enterprises like coffee houses or bakeries, generating revenue as well as training and jobs for individuals who can thrive in a supported workplace.

In an ideal world, Hawaii families would have a range of living options to choose from, taking into account factors such as costs, needed levels of support and their son’s or daughter’s desire for independence.

From concept to opening, these communities take several years to develop. In Hawaii, where financing is a challenge and obtaining permits and permissions can slow projects to a crawl, the timeline can extend out even further.

But taking steps now to assess the desires of those with special needs, identify residential properties and employment opportunities, and begin the journey toward workable solutions can perhaps bring an end to the grim dreams that keep some of us up at nights.