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Liz Brandt thought her family was at a financial dead-end when it came to providing the residential care and medication her oldest son needed to effectively manage his schizophrenia diagnosis.
Despite being financially comfortable, the Brandts had dipped into college funds, retirement savings and other monetary avenues to ensure their son had access to crucial support and medication at a top-notch care facility that came with a daunting price tag.
“When he’s healthy, he’s my buddy again, we’re working together and he’s trying to get better, and none of that’s possible without the medication he’s on—Clozapine—which needs to be started in a residential setting where they can be really closely monitoring you,” Brandt explains. “We got him transferred to [a hospital] in Connecticut, which costs a fortune—but at the same time, it offers these cutting-edge treatments and they really know what they’re doing. They’re using this medication that no one else seems to be using because it can be tricky, and little by little my son was coming back.”
And while the results were promising, Brandt notes that they came at about $35,000 a month. A friend eventually sent Brandt information about the New Jersey Catastrophic Illness in Children Relief Fund Commission (CICRF), a financial assistance program for New Jersey families whose children have a condition, illness, injury, disability or disorder necessitating expensive care not covered by insurance or other resources.
Interim Executive Director LorieAnn Wilkerson-Leconte, MPH, explains that the Commission helps families alleviate the financial burden of medical expenses that exceed 10% of their annual income—regardless of the child's condition or the family’s financial status.
Wilkerson-Leconte adds, “CICRF was the nation’s first program to offer direct medical debt relief to families, awarding over $208 million on behalf New Jersey children since December 1989.”
Brandt still wasn’t sure CICRF would see her family’s need, though, and was floored when the commission awarded them a reimbursement covering a truly significant portion of her son’s treatment—twice. She enthusiastically praises it for being “a lifesaver,” from alleviating her family’s medical debt to restoring her son’s quality of life. That impact has not only made Brandt a staunch CICRF advocate but also encouraged her to volunteer as one of the parent advisors to the commission.
“Honestly, if this fund hadn’t been there for us, we couldn’t have kept paying for the hospital,” Brandt confirms, adding that she believes her son would have become a tragic cautionary tale without it. “The difference in care that my son has had because of those two grants is why he’s now functioning at such a high level.”
And while CICRF does support families with children who have various diagnoses, Brandt especially appreciates how its team “respected my son’s diagnosis the same way as any other illness” when the family had become so accustomed to navigating the stigma associated with so many mental-health diagnoses.
It has also helped her connect with other parents who understand the uniquely difficult challenges her family went through, while giving her an opportunity to spread the word about a powerfully impactful program that helped her family climb out of debt without compromising her son’s well-being.
“It puts a strain on your family and it puts a strain on your marriage when you’re going through all the money you’ve saved up—you can’t have a normal life living like that,” Brandt recalls. “I am all about community, so I’m always talking about the Fund because people just don’t know about it—I even told someone about it at the playground once. … I know people have their doubts just like I did, but you’re allowed to ask for help. This fund is for people who need that help.”
Most of all, though, Brandt says that the CICRF has “given me my son back” and set him on a course where he’s now able to attend college and look forward to a much brighter future than the one his family feared before the fund changed their lives for the better.
And it’s a future she wants for every child struggling to regard their next chapter with optimism.
“I’ll meet people who have been going through the worst for 15 years, and it breaks my heart because it doesn’t have to be like that: The fund has completely changed my son’s trajectory,” she says. “You can get real, meaningful help. Your kid has a chance.”
New Jersey Catastrophic Illness in Children Relief Fund
(609) 292-0600 | NJ.gov/HumanServices/CICRF/
