Ensuring Access
Families Speak Out to Protect Medicaid and Insurance
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| Kelly Ackley with son Evan in their home in Cincinnati. |
Children need advocates – people to tell their stories. And when public policy prevents children from receiving the best treatment possible, parents often step in to actively advocate for their kids.
Cincinnati Children's Hospital Medical Center offers families support and assistance in advocating for change. "The Ohio General Assembly and United States Congress can be complicated and intimidating. We provide a road map so families can reach elected officials to talk about the realities of their lives," says Dee Ellingwood, senior vice president of Planning and Business Development.
Speaking Out
From improved seat belt laws to lead paint removal, Melissa Saladonis, government relations officer at Cincinnati Children's, connects families and policy-makers. Parents of medically fragile children travel regularly to Columbus and Washington, DC, to advocate for their kids. Melissa helps coordinate appointments with legislators. And through email campaigns, Child Advocacy and Government Relations at Cincinnati Children's alerts interested parties when programs are in danger of being cut. "Our goal is to help elected officials understand what their decisions mean to children and their families," Melissa says.
Ohio remains one of a few states that allows private insurers to exclude mental illness from covered health conditions. In 2001, after her son was hospitalized at Cincinnati Children's, Pamela Mattson was informed by her health insurance company that her 14-year-old son Peter, who has bipolar disorder and Asperger's syndrome, had exhausted his insurance benefits for inpatient and partial psychiatric care "for the rest of his life."
Pamela testified before Ohio legislators when her family – thousands of dollars in debt – faced losing their home to continue paying for Peter's treatment, including medication, therapy, case management and hospitalization. "I know my child can be successful. We have had long periods of normalcy when he gets the treatment he needs. That's why I support legislation to secure mental health coverage for all children."
Evan's Story
Another issue that mobilizes parents is Medicaid funding. For Chip and Kelly Ackley, whose 4-year-old son Evan has been a patient at the Cincinnati Children's Center for Infants and Children with Special Needs since he was 3 weeks old, the battle to protect Medicaid coverage is ongoing.
Faced with multiple physical limitations, Evan lives a difficult life. He has cerebral palsy, chronic lung disease, reflux and sleep apnea. He will never walk, speak, see or sit up. To stay alive, Evan relies on a complicated regimen of medication, a special diet, physical therapy, nursing care and frequent visits to Cincinnati Children's. Any one part of Evan's care would bankrupt the Ackley family if it weren't for a Medicaid waiver, combined with support from the Bureau for Children with Mental Handicaps and their own insurance.
One Voice Among Many
When state legislators consider freezing or cutting Medicaid reimbursement, as they have virtually every year of Evan's life, Kelly is among the first to write, call and visit the Ohio Statehouse. "I've learned that if you don't speak out for your child, no one else will," she says. "I've had to fight and scratch for every benefit."
Children like Evan aren't the only ones who rely on Medicaid. "When government funding is cut, all children suffer," Melissa says. "The very services that meet the highest community need for low-income and severely ill children cannot be sustained when they are not supported."
Standing Up for Families
A core belief at Cincinnati Children's is that all children have the right to medical care, regardless of a family's ability to pay. In addition to helping families advocate, Cincinnati Children's has financial counselors who help arrange payment plans and financial assistance, as well as identify other financial resources for families who have children with special medical needs.
When statistics aren't enough, the heartfelt stories told by parents can tip the scales in favor of policies that support children. Only when all children have access to the best medical care possible will parents and advocates from Cincinnati Children's know their jobs are done.
