Column: Home sweet home: Time running out for some with disabilities

Where each of us calls home is essential to us as individuals, families and communities. We make memories there, we strengthen relationships there, and most importantly, we make decisions there — in our home.

Now for many adults with intellectual and developmental disabilities (IDD), these opportunities are about to disappear. Their parents are their caregivers. These parents are all aging. The state has very limited, not very creative, options for them when the time comes for them to leave their home and access the support system and community that they know and like. We are talking about an estimated 2,500 people. This is a manageable number if we think creatively, develop new partnerships and apply our unique sense of aloha to solutions.

Consider this:

>> Institutions in Hawaii were closed in 1999 so that individuals with IDD could live in their home communities, attending neighborhood schools, participating in church, and making lasting connections in the community. These individuals are now adults and need a range of appropriate living options as parents will soon be unable to care for them.

>> Appropriate living options in home neighborhoods and with age-appropriate house mates are extremely limited, and individuals can wait 10 years or more for such options, and, when a vacancy is offered, it is likely many miles from their home community. Housemates can be 25-plus years older.

>> A survey our organization did in 2018 indicated that 67% of families surveyed, who currently have an adult with IDD living with them, will need an alternative residential placement for the person in five to 10 years.

>> 71% of families report that they have made no plans for future placement.

>> 94% of the adults with IDD desire to live in or near their home community when a future placement is found.

These facts and numbers highlight a clear need to mobilize, develop a plan, and implement it. This plan will require collaboration among many sectors in Hawaii — city and state agencies, the state Legislature, the business sector involved in residential development, nonprofit organizations, the faith community and the families of individuals with IDD.

We envision a plan that identifies new ways, through legislation to:

>> Provide incentives for developers to set aside units for individuals with intellectual and developmental disabilities in their projects;

>> More flexible use of state and federal dollars to underwrite community-based housing for individuals with IDD;

>> More opportunities for families and their members to play a direct role in the state infrastructure for delivery support services; and

>> A coalition of developers and families to explore residential models and to pilot-test some models.

If we do these things, many benefits will result: Families and their members with IDD will have some peace of mind because their pleas have been addressed; public dollars will have been spent more wisely; community groups will be better educated; and developers will have reaped the benefits of smart collaboration.

We are not alone in these concerns and have garnered interest from the Hawaii Autism Foundation, Center on Disabilities Studies at the University of Hawaii, Pacific Housing Assistance Corp. and the Hawaii State Council on Developmental Disabilities.

We are encouraged that new legislation is being considered — House Bill 1749 — for a supportive housing task force, which proposes to bring stakeholders together to develop a roadmap for implementing supportive housing, address financing opportunities, bridge housing developers with supportive housing service providers, and develop best practices for supportive housing in the state.

Inaction is not an option. Acting within silos will slow things down.

Please join our organization, Fuller Lives (www.fullerlives.org), to push to bring all relevant partners together, to support this legislation and shape a future for adults with intellectual and developmental disabilities, offering a model for the nation and future generations that is worth replicating and sustaining.

Susan Berk is president and Patricia Morrissey is a board member of Fuller Lives.