Friday, July 24, 2015

The Catalyst Center is looking for examples of families of children and youth with special health care needs who face inequities in health care coverage and financing

Who is the Catalyst Center? 
The Catalyst Center is a national center dedicated to improving health care coverage and financing for children and youth with special health care needs (CYSHCN). The federal Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services funds our work. We work with families, states, and other partners to help ensure families of CYSHCN have access to adequate public and/or private insurance to pay for the services they need. At the Catalyst Center, one of our goals is to raise awareness about inequities in health care coverage and financing for CYSHCN. We accomplish this by learning from families and sharing their stories.

Can you help us understand the barriers and highlight the need for reducing coverage and financing inequities among CYSHCN? 
Families raising CYSHCN often face challenges getting access to and paying for adequate health care. Our experience in working with professionals and family leaders tells us that this can be particularly difficult for families of color, immigrants and families from diverse cultural backgrounds, those who speak a language other than English, have limited income, or whose child has physical, mental, behavioral, or emotional health needs that greatly affect their ability to do things the same way as other children their age.

Lawmakers and others who shape health care policy don’t always realize this. Your story will help policymakers, advocates, and family leaders at the local, state, and national levels learn about the importance of improving coverage and access to care for diverse children and their families, especially those who have faced increased barriers to coverage and paying for services. Your story will help start conversations and may help generate policies that will provide “real world” solutions.

We want to know what works. Please tell us about resources or specific services you may have received that have helped your family overcome barriers. We also want to know about continued barriers you may face, and what more can be done to support your family.

How will the stories be used?
We intend to include these family stories in written materials that can be printed and posted on our website and sent to policymakers, health care providers, family leaders, advocates, legislators and other interested parties. We also may use the information to publish research on outreach strategies to reduce inequities among CYSHCN. Neither your child’s nor your family’s identifying information will be used without your permission.

We are parents of CYSHCN too.
Meg Comeau, Co-Principal Investigator, and Beth Dworetzky, Project Director, are both parents of CYSHCN; they, and the entire Catalyst Center team, understand that the families who share their stories with us are giving us a gift. We honor your trust and will respect how you want your story to be told. We will protect your family’s privacy by leaving out any personal information you don’t want us to share and we will only share your story with your consent. Your story can be anonymous.

If you would like to share your story with us, we would like to set up a time to speak with you over the phone and hear about your family’s experiences. You can answer all, some, or none of the below questions and/or provide us with any other information you’d like us to know. You can also limit the information you’d like us to share with our partners in any way that feels comfortable for you.

Thank you!
Kasey Wilson, Research Assistant
wilsonka@bu.edu



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