Inclusion First: Forum set for developmentally disabled advocacy in West Hawaii

  • Sanoe Wong, right, Isaiah Wong and Robbie Sanoria gather for the pule at the 2017 Inclusion First West Hawaii Island Disability Legislative Forum at Old Airport Makaeo Pavilion. (Laura Ruminski/West Hawaii Today)
  • Heidi Hargett presents John Perillo, Kona Safeway manager, with the 2017 Inclusion First West Hawaii Island Disability Legislative Forum Outstanding Advocate Award at Old Airport Makaeo Pavilion. (Laura Ruminski/West Hawaii Today file)

KAILUA-KONA — West Hawaii’s developmentally disabled population is largely misunderstood, from the services its members require to the value they can offer the community once their needs are adequately addressed.

“What you hear are these biases or stereotypes — that people have a poor quality of life or that they’re unhealthy or that they can’t do different things, and that’s just not true,” said James Kilgore, executive director of Full Life Hawaii. “Beyond functioning and living, there’s value these people add (to their communities). They have unique abilities. They are people that are ready and willing to work.”

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Advocates for the developmentally disabled like Kilgore and Jeri Raymond, adult day health service coordinator at the Arc of Kona, say the battle for inclusion into mainstream society is an uphill climb littered with roadblocks.

The Inclusion First, West Hawaii Disability Legislative Forum that will take place 3:30-6:30 p.m. Oct. 25 at the Old Kona Airport Makaeo Events Pavilion is dedicated to helping special needs individuals, their families and advocates overcome those barriers together.

The forum will feature a panel of state legislators, county officials and state Department of Health officials who will discuss concerns and legislation regarding transportation, employment, education, housing and health for West Hawaii’s developmentally disabled community.

Those who attend can submit questions or concerns to the nine panelists, which this year will include Rep. Nicole Lowen (D-North Kona), Sen. Josh Green (D-Kona, Ka‘u and Democratic nominee for lieutenant governor), and Hawaii County Council Chairwoman Valerie Poindexter.

Sponsors are in talks with and hope to secure Hawaii First Lady Dawn Ige as the event’s keynote speaker.

There will also be 19 vendors on hand, mostly local agencies, with whom interested parties can make contact. Light refreshments will also be available.

Kilgore asserted there is value in attendance for even those who aren’t directly touched by developmental disabilities, whether they be special needs individuals, families or caregivers, service providers or educators of some sort. It’s really for anyone who cares about his or her community, Kilgore said.

Raymond said one issue remains the headlining barrier facing developmentally disabled people as they strive to gain societal inclusion.

“Transportation is still the kicker for them to get a job, keep a job and go have a life,” she said.

Difficulties with the fixed route public transportation system in West Hawaii abound, and while a county-funded Hele-On paratransit system, which offers door-to-door pickup services, has helped, much more remains to be done to spread the word about the program as well as to expand its impact.

Those who can get to and from work have had great success, Raymond said. Last year, Safeway was honored at the forum for its excellence and dedication in efforts to employ the developmentally disabled. This year, the honoree will be Kona Community Hospital.

Another keystone issue is housing. Kilgore said there is precious little housing inventory for this unique community to live on their own, especially as their familial caregivers age.

When that happens, these individuals are often displaced and potentially separated from living, loving members of their families through no fault of their own — almost akin to refugees created by a lack of institutional resources.

“It’s pretty challenging, and we hear stories of people having to leave the island if their families are having difficulty caring for them,” Kilgore said. “If their parents are getting older … there’s not the housing resources.”

He added he’s aware of only two group homes in West Hawaii, each with extremely limited bed space and long waiting lists.

Workers and volunteers with Arc of Kona, many of whom are familial caregivers to special needs loved ones, often come to Debi Buchholz, a service provider with the organization, with the simple yet overwhelming and daunting question of, “What do I do?”

“(Their children) can’t stay in their communities,” explained Buchholz, adding these individuals don’t just lose their parents and caregivers, but also the people they’ve come to know and trust in their neighborhoods. “They have to go live somewhere else because they can’t live on their own.”

Another option is adult foster care, but Raymond explained that is also in short supply. Those interested in becoming foster families for adults with developmental disabilities would be served by attending the late-October inclusion forum, she added.

Other barriers exist that are less obvious.

Despite fighting for years, advocates still can’t secure preventative dental care for any members of the developmentally disabled community. Medicaid waiver services, which make organizations like Arc of Kona possible, don’t offer such dental care.

Kilgore recalled the case of a blind man in Kona who waited a year for the installation of an audible signal so he could safely cross Palani Road.

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Even attitudes, like those tinted by bias and stereotype referenced by Kilgore earlier, are barriers to inclusion. The forum is a chance to address those barriers with the officials who make laws as well as shape and implement policy.

“When do you (get the chance) to ask questions directly of an authority?” Raymond posed. “This is an opportunity.”

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