Christina Dehen describes the living room of her home in Hudsonville as a “mini ICU.” Among the typical furniture are the monitors and medical equipment Dehen needs to care for her 6-year-old son, Gabriel, who was born with a rare X chromosome genetic variant called PIGA-congenital disorder of glycosylation (CDG). It’s a disease that he shares with just 108 others worldwide.
“When Gabe was born, he came out having a seizure and not breathing well. He needed to be supported with oxygen and he was taken to the NICU shortly after birth,” says Dehen. “He spent 42 days in the NICU, and since he was born, he has had 58 hospital admissions.”
Dehen was tested and learned she is a carrier of the gene that results in CDG. “What’s interesting about it is that it runs in families,” she says, sharing information about boys born to her grandmother, her mother and her sister who all had similar characteristics and who died in early childhood. “It’s a blessing for our family because now females are able to be tested to see if they are carriers before they make decisions on having children or not,” she says.
Medical needs come with expenses
As Dehen and her husband, David, love and care for Gabe, they’re also mindful of the many costs associated with his day-to-day life. Because Gabe spent more than 30 days in the NICU following his birth, he qualified for Medicaid benefits for his first year of life. After that initial period, Gabe no longer qualified for Medicaid because his parents’ income was too high.
With support from a Michigan Department of Health and Human Services program called Children’s Special Health Care Services, Dehen applied for a waiver program for Medicaid. She also learned about a program called MiABLE that allows families to save for expenses related to their child’s disability without impacting eligibility for government benefits.
Typically, individuals limit their eligibility for benefits they need — like Medicaid and Supplemental Security Income (SSI) — if they report more than $2,000 in financial resources. MiABLE allows these individuals to save money for expenses that relate to their disability and help them improve or maintain independence, or their quality of life or health. MiABLE is available to children and adults who became disabled or blind before the age of 26 and are entitled to collect SSI or Social Security Disability Income because of the disability. Current age doesn’t matter, and the individual can be older than 26.
“For families that rely on Medicaid they receive based on their income, MiABLE means that they can save money and not have it show up as an asset, which makes sense for a lot of families,” Dehen explains.
MiABLE helps with expenses related to quality of life and health
While Gabe was granted a waiver that allows many of his supportive therapies to be covered by Medicaid, several expenses fall outside that umbrella. “We are happy to have our MiABLE account even if Gabe qualifies for Medicaid because it’s a separate account for us to keep his money in that makes sense,” Dehen says.
Because Gabe is unable to lift his head or hold on to objects, he’s unable to play with toys and games. But that doesn’t mean he doesn’t need other beneficial items. “We’d rather save money for things that are worthwhile for him,” Dehen says. “We used money from his MiABLE account to buy him a swing that we could hang in a doorway of our house. It cost $475, but it’s something he enjoys and is good for his brain. Any vestibular activities are good for him.”
Gabe’s extended family members can even donate to his MiABLE account, which can accept contributions of up to $15,000 each year, with a maximum of $100,000 in total assets before affecting eligibility for SSI. And contributors who are Michigan residents can take a deduction of up to $5,000 ($10,000 for joint filers) on their Michigan income tax returns.
When the Dehen family held a benefit to raise money for needed big-ticket items, they took what they raised and deposited it into Gabe’s MiABLE account. Together with other sources of funding, they were able to use that money to purchase a specially equipped van.
Building financial security
A MiABLE account can help individuals with disabilities build financial security and have a better quality of life without affecting their eligibility for services they need, which makes a lot of sense, Dehen says.
“We would literally have to be poor to be able to have Medicaid, and this is a disservice to a lot of people,” she says. “We have a child with multimillion-dollar issues, and we’d have to be careful of how much we make so we wouldn’t have medical bills. People can’t live that way. They’re living under the poverty level to qualify for Medicaid.” Dehen says she’s grateful for the Medicaid waiver — not available to everyone with a disability — and for MiABLE, which helps her plan financially for what Gabe needs.
“With MiABLE, you can’t use the money for anything else. If money is in MiABLE, it belongs to that account and not to mine. So, if your car breaks down, you can’t dip into it. We could use it for Gabe’s van because that’s his transportation. The money doesn’t get used for what it shouldn’t be used for. We set it aside for those situations and we know it’s there.”
Dehen says she appreciates having a convenient MiABLE debit card that she can use at the pharmacy or grocery store for supplies not covered by Medicaid. “Diapers are provided through Medicaid, but wipes are not, so we can use the MiABLE account to buy baby wipes or Tylenol if needed,” she says.
Dehen knows that Gabe’s disorder is degenerative, and over time, his organs will begin to fail. “It’s a terminal condition. With MiABLE, we will be able to use that money toward funeral expenses for him. In fact, we have set up some of that already and put the wheels in motion to get him a plot ahead of time, using funds so we don’t have to worry about it when the situation arises,” she says.
Dehen, who recently celebrated her 40th birthday, is returning to school to become a nurse. “This is never anything I thought I would do, but with Gabe’s care, I have figured out this is something I really love. I like to care for others and I’m a parent mentor through the state, which I went through training to do,” she says, adding that she looks forward to being able to help other families navigate the health care system and learn how to advocate for their children.
“My experience has changed my trajectory,” she says. “If I hadn’t had a situation with my son, being a nurse wouldn’t have ever been on my radar.”
Learn more about MiABLE at miable.org or call 844-656-7225.