John Loeppky speaks with Roxanne Bolden, Executive Director (E.D.) of Aloha Independent Living Hawaii. Roxanne talks about the challenges that the pandemic has brought to the islands, difficulties in transportation, and how home health care differs from the mainland.
“We are advocating on a different level," says Roxanne Bolden on the unique needs of islanders.
Bolden is the E.D. of Aloha Independent Living Hawaii, one of Hawaii’s two CILs. Aloha is located in Pearly City and services people in all areas of Hawaii that aren’t metropolitan Honolulu – where Access to Independence-Honolulu is the first point of contact. The two organizations, however, aren’t the only providers to have ever existed there. In fact, it was partially the prolonged scandal and mismanagement at Hawaii Centers for Independent Living that brought Aloha into the picture.
Bolden used to work at the former CIL, at the time the only one in the state. In 2005 she came together with a number of local non-profit executive directors to work towards opening their own center. From 2005 to 2009 Bolden and her team continued to build towards being able to offer services, gaining non-profit status in 2008, state funding in 2009, and wider federal funding in 2014 after Hawaii Centres for Independent was shut down. That decision came after its then-director was charged with embezzling almost $180,000 in funds.
Aloha started with ten consumers, all students transitioning out of a local high school program on the north shore of Oahu. That’s now grown to approximately 400, who are now supported by just shy of 20 staff members, some of whom have positions because of CARES Act funding made available because of the pandemic. It’s COVID-19, Bolden says, that has had a large impact on Hawaii’s consumers with disabilities.
“We'd taken a survey [...] called our consumers during the pandemic to ask them, what were some of the greatest needs that they had. And we found out two of the biggest things, and they kind of work together. One is loneliness, isolation, and the lack of connectivity [...] and then the next one was transportation.”
Barriers to transportation
One of the biggest issues facing consumers was that the pandemic had limited the opportunities for disabled people to bring along care attendants. According to Bolden, some state and county agencies would take people to their medical appointments, but not their pharmacists. Another area of concern was the limited timeframes being offered – sometimes as short as 15 to 20 minutes -- for disabled people to pick up their groceries and return to the transit system. When the CIL received a donated accessible van in Hilo on the Big Island of Hawaii, it was a relief.
“There were so many barriers and our transportation alleviates and eliminates all of that. Because if John needs to go somewhere, it doesn't matter if the doctor's appointment, the pharmacy, you know, the post office, the laundromat, wherever in the community, we will transport him and take him exactly to that location without any time restraints.”
Mitigating social isolation
Aloha also offers a wide variety of support group programs and has hired a technical trainer to teach consumers how to use electronic devices in order to reduce isolation and increase access to appointments with medical providers. That connection, between social groups and technology, has been a real plus for the organization, according to Bolden.
“On every island, we used to meet. But then the pandemic happened and that's where the magic of Zoom came into place. Because together with tele-connect to help set up these folks with Zoom, instead of each Independent living specialist meeting with their groups on their island, now we can have an inter-island Zoom peer support group where all the consumers from different islands get to meet each other and connect.”
Limited housing
Beyond connections, like many of Hawaii’s approximately 1.4 million citizens, housing is a large concern for those with disabilities – alongside goals related to transportation, financial wellness, education, and employment in the wider state plan. Bolden says that housing makes up the “bulk” of requests from consumers.
“Well, we can’t control housing here in Hawaii, because we're limited − what's available is what's available − and we can't produce any more housing.”
She also says that mainland understanding of nursing homes does not translate to life in Hawaii particularly on what is locally called the neighboring islands – those that aren’t Oahu.
“Hawaii doesn't necessarily have nursing homes. It's not like the mainland where it's very dominant. On the neighbor islands, there are no-nurse nursing homes, they're actually private care homes and they're owned by individual people who have two rooms that they rent out and they bring in people.”
Bolden says that the distinction between private care and state care makes advocacy more complicated because the homes exist on private property. She says they can only support consumers who get in contact with them about wanting to transition out of that environment.
“When we're talking about transition it's more divergent . . . We want to make sure that we keep them out of those private care homes or from group homes and so forth.”
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