Protecting Chronically Ill Young People

What it means for families when kids transition to adulthood

By Deborah Jeanne Sergeant

Chronic illnesses in children can cost hundreds of thousands of dollars. As teens become young adults, a rite of passage necessary for chronically ill young people is transitioning to adult health coverage.

Parents shouldn’t delay making their plans.

Physician Dennis Z. Kuo said that parents need to start as early as age 12 to develop processes for moving into the adult health system, as recommended by the American Academy of Pediatrics. While that may seem inordinately young, the system is so complex that the “extra” time is warranted.

“There’s a lot of issues,” said Kuo, who is the division chief of general pediatrics at the University at Buffalo and medical director of primary care services at Women & Children‘s Hospital of Buffalo. “Eighteen is a big age where things change. The law treats you as an adult at 18 to make decisions.”

He thinks that starting at age 12, the child should be assessed by parents for the ability to administer medication. By 14 or 15, the child should be able to recite their medication and dosage. At 16, most teens can set up doctor’s visits and how they’ll pay for medication.

Kuo’s daughter, 17, manages a costly chronic health condition and he has been working with her since she was a pre-teen to assess and plan for when she will go to college. The family is also mapping out how she will transition out of pediatric care, a step that can be difficult for some chronically ill children.

Some pediatric specialists wait until their patients are in their mid-20s. Other adhere to a strict cut-off age of 18.

Kuo’s daughter uses the family’s private insurance and may continue to do so through age 26.

“A lot of the systems that our young adults navigate are pretty fragmented, which is why we encourage planning during the teenaged years,” Kuo said. “We see young people go through periods where their coverage is dropped for two to four years. They slip through the cracks. When this happens with a chronic health condition and they don’t do well, they end up in the emergency room.

“These issues can’t be jammed into a single visit when they’re 18. You have to start when they’re 12.”

Once cognitively disabled teens on Medicaid reach 19, they must recertify as adults. The process isn’t straightforward, according to the physician.

Lisa J. Allen, an attorney operating The Law Offices of Lisa J. Allen, PLLC, in Williamsville, knows the routine as the parent of a young person with disabilities and extensive health conditions.

As for a chronically ill young person who is also cognitively disabled, she advises parents to obtain a court ruling that their 18-year-old is an incapacitated adult so they can continue to help make decisions about health care, residence and education.

For young people without a cognitive disability, they can sign a power of attorney and health care proxy to continue receiving parental help in making decisions.

Otherwise, “once any child reaches 18, you have no ability to know their medical interests or their decision making,” Allen said.

Without those legal instruments, the parents are left out, even if their now-adult child entirely depends upon their input for making medical choices about their care. That’s why it’s important to discuss the family’s needs with a caseworker to fully know their options and make an informed decision. The teen’s medical provider can offer recommendations on caseworkers that can help them navigate the often complex processes and make plans that work well for their family.