Real Life Story

Title V: Giving Families Strength - Q & A with Nicole Schomberg 

Nicole Schomberg is the Project Director at Family TIES of Nevada for the Nevada State Implementation Grant for Improving Systems of Services for Children and Youth with Special Health Care Needs. She also is a board member for the Down Syndrome Network of Northern Nevada, and a parent representative on Nevada’s Title V Advisory Committee. Nicole and her husband have three children – Roman, 23, Heather, 21, and Becky, 18. Soon after Heather was born, she was diagnosed with Down syndrome and two holes in her heart, requiring intensive care and services from a variety of healthcare providers. Please read on to learn more about Nicole, her family and how Title V supported their health care journey.

How did you first become aware of Title V?

My husband and I were a young, married couple and we didn’t have health insurance when our daughter, Heather, was born. When she was two weeks old, we started her in early intervention services. After six months of monitoring Heather’s condition, our pediatric cardiologist told us that Heather would need open heart surgery, and early intervention services referred us to Title V and their children with special health care needs services. Title V was a payer of last resort for parents without health insurance and fortunately, we were connected to them, because they paid for Heather’s surgery and medical bills when she was hospitalized for two months following her surgery because of complications – she had a blood clot and her heart doubled in size. It was great to know that there were services like Title V our there to help us, because it was a really hard time for us.

What is something that occurred through your work with Title V that you didn’t expect?

Before Heather was born, I didn’t know services like Title V were out there – that they had put money aside to help families with children with special needs and provide services for them. The process was simple and easy – we had an initial meeting with Title V staff and they helped take care of everything we needed and helped with our medical care and bills. 

What would you want other families to know about Title V?

One of the big things is that they [Title V] do care about families and they do have many programs, including those for pregnant women. Title V also has advisory committees that families can participate on. It’s important for parents to know that Title V also partners with family organizations, like Family TIES of Nevada, to understand their needs and then provide services to meet those needs. 

Please describe the strengths and value that families bring to Title V?

Families need to tell their stories and talk about their challenges. In Nevada, Title V helped organize the Families First conference and they surveyed families at that meeting, to get their feedback on what specialized health services they need. Getting this information from families helps get doctors into their communities and more services for children. 

What advice would you give to Title V Directors and staff that want to work more with families in their state?

Having families on advisory committees is very helpful and it’s also important to partner with family organizations and agencies to reach out to and connect with families and learn about what they need. 

How has your experience with Title V impacted you and your family to this day?

They really helped us to truly have health services. My husband lost a lot of work, and we almost lost our daughter. Title V gave us strength. It also helped Heather’s siblings to understand the importance of health insurance and making their own health a high priority. Becky, our youngest daughter, is in a mentorship program at the hospital and going into nursing – her focus is the pediatric intensive care unit. We’re big advocates for all of our children to grow up to be independent, have self-determination, and be able to live lives like everyone else. When we were close to losing Heather, that changed our attitudes and our family’s major goal became making her happy and being a part of the community and do whatever anyone else can do. We don’t know what would have happened if we didn’t have the support from Title V.

Interviewed by Angela Tobin, AM, LSW, Manager, Technical Assistance, American Academy of Pediatrics.