Updated 1/12/22, 9:30 a.m.
"We are always at a disadvantage with our kid's disability, right? We're always behind the eight ball," said Amanda Kaʻahanui, a parent of an 18-year-old son, Ikaika, with a disability.
"We look at other families doing things, and we can't often do the same things."
Kaʻahanui's son, like many others with disabilities, relies on state and federal benefits — such as Medicaid and Social Security — in order to pay for everyday expenses.
But in order to maintain their eligibility, they cannot have more than $2,000 in savings.
"We kind of force people to live in poverty, to make sure they don't go over that amount," said Daintry Bartoldus, executive administrator for the state Council on Developmental Disabilities.
Bartoldus says individuals receive roughly $775 a month from supplemental security income — if they don't live in a licensed or certified home. If they do live in a home, they can receive up to $1,400 a month. However, $1,350 goes to room and board, leaving people with only $50 for any other expenses or purchases.
"What happens a lot of the time is a person will save that money up, in order to use it," Bartoldus said.
For most Hawaiʻi families, this income is crucial in order to offset additional care and living costs needed for their child. But with the state's high cost of living, individuals and families struggle to make ends meet, and maintain eligibility for benefits.
Additionally, parents stress over what will happen to their child when they are no longer around.
"For my son, it's really important because he does have Medicaid. And he really needs that Medicaid benefits," Kaʻahanui said.
"We don't want him to live in poverty, we don't want him to live month-to-month, or barely scrape by, or lose that benefit, or anything else that helps him grow and become a member of society."
In the last six years, the state passed several laws that would allow individuals with disabilities to earn and save money, without putting their federal and state benefits in jeopardy.
One of them is the Hawaiʻi ABLE Savings program, which officially launched in November 2020. Under this program, individuals and their families can save up to $100,000.
"You could contribute up to $16,000 a year, where you could spend it on achieving a better life experience," Bartoldus said. "It could be education, housing, basic living expenses. This just really broadens the scope of what the individuals can spend their money on."
The ABLE savings program is an investment account modeled on a 529 college plan, but is based online. Parents, family members and individuals can open an account with as little as $25, and contribute money whenever possible. There is also an option to invest the money, where it can gain interest.
But unlike other investment savings accounts, individuals can access their money with a debit card, and there are no service fees.
The account also allows family members and individuals to set limits on spending — preventing individuals from spending all their money.
In 2019, the state passed Kal's law, allowing individuals with jobs to receive income without putting their benefits at risk.
That combined with the Hawaii ABLE savings program gives parents, like Kaʻahanui, a sense of relief and joy that their child can have more independence.
"I think it's really going to allow individuals, as well, to raise themselves up. And to know that they have value, and know that they're going to be okay."
"We can save money for our children, they can inherit money from their relatives — just like any other cousin or niece or nephew... It takes away some of that worry of what's going to happen."
More information about the state's ABLE Savings Program can be found online at www.hawaiiablesavings.com.
An informational webinar hosted by the Council on Developmental Disabilities is held on the last Wednesday of every month.
Past webinars can be found on the council's Facebook page. And the council can be contacted by phone at 808-586-8100.
