KAILUA-KONA — Jeri Raymond heard some of the most profound words of her life 15 years ago in Oregon, at an institution that provided care to people with developmental disabilities.
“You (normals) think you know everything, and you’re afraid of us, too,” a man told her. “We’re not stupid people. And we want the white picket fence, just like you do.”
It was the image of the white picket fence that sunk in that day — Raymond’s first on the job — at the beginning of a group therapy session she was set to lead. And it’s that image that continues to resonate with her today, a decade and a half later.
A white picket fence. Happiness. Inclusion.
“They deserve it,” said Raymond, who now serves as the adult day health service coordinator at Arc of Kona.
The second annual Inclusion First West Hawaii Disability Legislative Forum, set for 3-7 p.m. Thursday at the Old Airport Pavilion in Kona, is about precisely that. Its intent is to help people with developmental disabilities and their families get what they deserve out of life. Help them get that white picket fence.
James Kilgore, executive director at Full Life, explained that there’s even more to the forum than that. It’s also about networking and influencing policy. It’s about building something worthwhile for this population in West Hawaii.
“My vision for this would be a grassroots effort, so the outcome would be people coming together on an issue to advocate,” he said. “They have the legislators’ ears right there, and they have each other. It could just build.”
Several government officials from the county and the state will sit on a panel at the Inclusion First Forum to discuss legislative solutions to serious problems those in West Hawaii with developmental disabilities and their families face every day.
Kilgore said when taking loved ones into account, the number of those affected on Hawaii Island alone reaches into the thousands.
Raymond said the five major challenge areas for this population are education, employment, health, housing and transportation. Many parents are reaching their elder years, and Raymond said steps need to be taken to make sure people with disabilities are prepared for life without those loved ones.
The best way to do that is to help them equip themselves for autonomous or semi-autonomous living situations.
Many in the population want to live on their own, but there is only one group home in West Hawaii. There are even fewer options for those who want independence and aren’t interested in group living.
To live on their own, they must find employment, which can be a challenge. And even when they do, more obstacles eventually appear in their paths.
Raymond noted an example of a man who missed work Sunday because public transportation is so limited on Hawaii Island, particularly the Hele-On Kakoo Paratransit system, which doesn’t run on certain days.
She also mentioned multiple avoidable health problems that pop up across the population and must be addressed.
“At age 18, they no longer have any preventative dental care,” Raymond explained. “Emergency oral extraction is the only care they have. So they wait until there’s an infection or rotten teeth. Bottom line, we are more susceptible to a stroke or heart attack with dental infection.”
Raymond recounted at least one fatality of a person with developmental disabilities that was connected directly to a lack of dental care.
Kilgore explained legislative action is the best — and often only — way to battle these systemic problems. He said decisions are often made based on what policy-makers believe is most important for someone with developmental disabilities, but that such an approach isn’t necessarily the best way.
Through legislative work, he said, that’s beginning to change across the state.
“Now our services are looking at what’s important to someone,” Kilgore explained. “So what’s important to me is I want to have a family. I want to live a long life with my family. … And that’s one thing that I’m really impressed with in the state of Hawaii. Their understanding of that difference.”
Beyond bringing attention to institutional deficiencies and influencing policy by asking direct questions of those who make it, Kilgore said the Inclusion First Forum is also an opportunity for providers to network with one another.
It also affords a chance to people with disabilities and their families to learn what resources are out there to help them, as vendors will be on hand.
“Legislation is a big key — there’s never enough resources and funding,” Kilgore said. “But it’s also about our whole community coming together to understand what the issues are and coming up with solutions.”
Those who want more information or who plan to attend and require auxiliary aids or services may contact Raymond via email at jeri@arcofkona.org or by phone at (808) 640-4838.
