MindShift Is Helping Parents Navigate The Health Care System
(Bloomberg) — Parents of children with special needs are getting help in navigating the health care system from a new resource at a time when estimates show about two-thirds of children who require continuous, regular medical treatment will remain uninsured.
“This portal is for parents that are looking for advice and information in navigating the health care system,” said Sidney Libman, president of MindShift. “This is about pediatric advocacy and about the health care system.”
The service, published Tuesday by ParentsConnect.org, is a repository of online resources from caregivers and special-needs organizations that range from daily journal entries written by nurses and doctors to the latest recommendations from specialists, advice from other parents and resources on Medicaid, alternative medicine and autism treatment. Libman described it as “the social network” for parents of children with disabilities.
“Being a parent of a special needs child is one of the most stressful jobs that you could possibly take on,” said Libman, whose toddler son, Ben, was diagnosed with autism spectrum disorder when he was 14 months old.
The website is part of Libman’s nonprofit organization, ParentsAdvocate.org, which is funded by grants from the Jeffrey Salomon Family Foundation, the Foundation for Autism Research and Education, and The Family Research Council.
Financial and Government Assistance
More than half of parents of children with special needs coverage have been unable to find one-on-one help in the health care system, according to the website. As a result, they are most likely to wait for symptoms to worsen or they give up care altogether.
About half of parents with children on Medicaid who use the website are finding Medicaid to be more complicated to navigate.
“We have been disempowered,” Libman said. “They give us valuable feedback. Parents will say, ‘You have to read this page, this piece of evidence, that piece of research.’”
ParentsConnect is available to anyone using the Internet and can be viewed free of charge at www.parentsconnect.org. Before the site opened, Libman said, parents had to pay hundreds of dollars to subscribe to the organizations’ other online sites.
Free Public Health Care
Many parents want to advocate for their children, Libman said, and the web service will “keep it from being a self-indulgent, passive, unknown affair.”
“Mom and dad are in school from the day their kids get diagnosed and until their kids are in preschool,” he said. “They need to understand, who in government is offering these services? Who is providing these aids?”
Among the parents listed on the website are families that are on Medicaid, which provides free public health care to low-income individuals or families. Others have children who are covered through private insurance, although many are unable to obtain services they need from the insurance companies. Some parents also listed have children in state programs for children with disabilities, such as New York’s Special Health Care for Children.
Libman said his goal is to keep the site running until those with disabilities get the services they need through public health programs and he plans to survey the site for ways to keep it online.
“These are the voices of real families,” he said. “This is real information about pediatricians, about autism, about pediatric neurodevelopmental services, about how to navigate the Medicaid system. This is information that is too often unreported.”
To contact the reporter on this story: Susan Berfield in Boston at [email protected]
To contact the editor responsible for this story: John Wilen at [email protected]
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