In Search Of A Place For Lauren - Honolulu Civil Beat

About the Author

Sandee Oshiro

Sandee Oshiro is a veteran journalist and digital strategist, formerly with Hawaii Public Radio, Southern California Public Radio, Poynter Institute, AOL/Huffington Post Patch Network and The Honolulu Advertiser.

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.

This drawing by the author’s daughter, Lauren Kato, shows the two of them together at home; Lauren is on the left, Sandee on the right. Lauren is an adult on the autism spectrum and currently lives at home with her aging parents, who help her to manage her daily life. She is one of many facing an uncertain future when her parents are gone. Lauren Kato

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.

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About the Author

Sandee Oshiro

Sandee Oshiro is a veteran journalist and digital strategist, formerly with Hawaii Public Radio, Southern California Public Radio, Poynter Institute, AOL/Huffington Post Patch Network and The Honolulu Advertiser.

Latest Comments (0)

A friend who has schizophrenia had been living with his parentls until they died. He was not able to find adequate and appropriate housing after that, even with the help of a social agency. In a way it was lucky that he just snapped and managed to get himself to the mainland, to Oregon. After a spell in a hospital, he was found a foster home unlike anything offered here. He is monitored professionally and is safe in an open, family-like environment.  Without it he would have become homeless and would have died. There is a desperate need for such housing here. I echo aapcis' call for our state to learn from positive examples such as is found in Oregon and California. It is the right thing to do and will help solve our homeless problem.

taueva · 2 years ago

Sad topic.  I know some afflicted families.  Retirement age parents my age that put their child into various programs while young, but very little help now just coping with the demands on them. I just video conferenced with one such family over the holidays and their only child is the same as I remembered when I first met them.  That was about 30+ years ago. I pray there is an answer but far too often our government does not hit the high mark when dealing with the most vulnerable in society. It makes me ill when I read this article and compare to another Civil Beat article today where someone's child got an unadvertised job from the city and jumped to another city job. Think about which one needs more help from government.

CKMsurf · 2 years ago

The State and County needs to step up and convene a task force to resolve this issue. A need to identify models in other States that work and viable funding. Perhaps some funding help from the federal level also. As a retired social worker I am aware that has been a long time issue that most families are not equipped to resolve on their own.  Where is the Dept. of Health and DOE on this area? 

Kupuna · 2 years ago

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