Editor’s note: This is the first story in a two-part series about the challenges people with special needs have getting help in Hawaii County.
Parents of special needs children say there’s a lack of support for them on the Big Island — and the pandemic has only made it worse.
In a “normal” year, Omak Moses, 35, can be found playing bocce ball with a big smile on his face as he prepares for the Special Olympics.
Unfortunately, Special Olympics and the state competition on Oahu have been canceled since the onset of the COVID-19 pandemic.
According to Chantel Ikehara, spokesperson for Special Olympics Hawaii, the organization is attempting to plan for a full spring and summer games season, but has asked all teams to hold off on starting practices until the end of the current surge in cases.
“Special Olympics is one of the only things we look forward to together, because it helps both of us connect with others,” said his mother, Filomena Milong. “Without support, activities and friends, they can become lonely and isolated.”
Moses has autism and is nonverbal, so he spends nearly all of his time with his mother or at the day center at The Arc of Hilo.
“He comes with us everywhere. We can’t leave him,” Milong said. “It’s hard for me to let him have an assistant, because of his communication, so it’s really been just me and him for his whole life.”
The day center did not reopen until May 2021 after closing in 2020 during the early days of the pandemic, which left Moses without some of his regular enrichment activities for more than a year.
Moses quickly picked up fishing last year and has fallen in love with the process, but is lacking social activities that would allow him to connect with people outside his family.
“What I’m really wanting is for my son to have friends. He asks me for friends all the time,” Milong said. “I want him to be exposed to different things with different people, but there aren’t many opportunities for us since he is nonverbal.”
When they do go out together, Milong has found that people do not know how to approach Moses or talk to him, which is an issue that many parents and families have faced with their special needs children.
Cristine Acupan is a single mother to C.J. Corpuz, a 21-year-old with autism who needs extra help.
Acupan spends most of her time working at her job or taking care of her son. With a lack of support, she does not always have the ability to take Corpuz to community events or activities.
“I hardly take him to community events, because people don’t understand the way he is,” Acupan said. “In the past 20 years of raising my boy, I have never heard of a parental support group that could help my child or me on the island.”
To help lighten her load, personal assistant Dan Foster spends time with Corpuz to help enrich his life and experience new things.
Foster and Corpuz spend their time walking through the park, feeding ducks, going thrift shopping and talking to each other.
After working in states across the U.S., Foster has found that there are very few resources in Hawaii for children and adults with developmental disabilities.
“There are not many activities for people with special needs here, and not a lot of community understanding of how people operate with disabilities,” Foster said. “Police aren’t trained to handle situations that involve someone with autism or other disabilities, and there is not a lot of general awareness in community.”
Foster believes that more opportunities for people with disabilities would help families, but also would give people in Hawaii County the opportunity to volunteer and learn how to interact with people who have developmental challenges.
“I thought it would be neat to have a community garden tended by special needs people where others can volunteer and get to know them,” Foster said. “I think it would also be great to teach parents how to talk with people with special needs. Some people just don’t know how to approach the subject with their kids.”
A new Big Island nonprofit is working to connect people with special needs to more resources and support their families through challenges, especially those perpetuated by the pandemic.
Rosalinda Larkin is the president and founder of Autism Support and Disability Center, or ASDC, and is a single mother to a 29-year old son with autism.
“When my son had a crisis in 2018, I realized there was no official protocol to facilitate a transfer for people with autism,” Larkin said. “I also saw that there is a communication gap between public services and the community, which are the driving forces that led me to start an autism support center.”
The mission of ASDC is to open a 24-hour call center to link people with disabilities and their families to a wide range of professional resources, especially in a crisis situation.
Larkin said that team members working with ASDC would act as a third party to law enforcement and emergency medical services to diffuse a situation that first responders may not be trained to handle.
“Prevention is key. We can prevent people from being misunderstood, because the fact is that our law enforcement are only trained in handling mental disability with adult behavior,” Larkin said. “There is no specific autism training, so this is where we fill in the gaps, so it will be easier on everyone.”
Along with assisting in crisis situations, ASDC want to provide group support to clients and families.
“While working in the Developmental Disability Division, I have seen the need for a family support systems here,” Vice President Ceraida Amar said. “This system would bring more fellowship and give people the opportunity to give support to one another and to discuss strategies on how to go through daily life.”
ASDC also aims to provide clients and families with a way to communicate and collaborate with the agencies and resources that can help people through challenges.
“One of our most important goals is spreading awareness and to educating the community, because autism is a complex developmental condition,” Larkin said. “If we have proper resources, services and support groups, we can ease some of the conditions that people with disabilities experience.”
ASDC is in the process of looking for a facility for the call center, although they currently run an ongoing family support group.
ASDC can be reached at (808) 339-8726.
Email Kelsey Walling at kwalling@hawaiitribune-herald.com