What Does Medicaid Mean to You? (by Mark Morrison)
Parents and family members of children with complex medical needs from across the country have sent us their stories. Stories of faith and hope, anger and tragedy. Stories that are written by parents in between daytime therapies and appointments, and those magic quiet hours between midnight tube feeds and 2am vent alarms. These stories that we have taken to Congressional offices can’t be boiled down to a representative few. Each and every child and family is different with different diagnoses and experiences but I felt it necessary to compile a few key quotes from these stories to illustrate what Medicaid is and what it means to these families.
Medicaid is one of the most frequented topics in the stories submitted to us. Parents have communicated to their Members of Congress through us the vital role that Medicaid plays in their lives and in the lives of their children. All of these parents have given permission to share their story here and I hope you will take some time to listen to them. Listen to their stories. See the worth in their children that they as parents see. And then call your members of Congress and tell them how vital Medicaid is to the families that need it.
Home Nursing Services
Home nursing services are vital to so many children who rely on Medicaid. Hillary and Ellen communicate this from experience to their Senators in New York:
And also Sheila, even though she doesn’t currently have nursing for her son, feels as though she is doing the work of one:
The Ability to Contribute to the Community
Nursing services comes up as often as Medicaid does in the parents’ stories and you will see further evidence of that in some of the following remarks. In the form of nursing and many other vital services, Medicaid gives these families and their children the ability to be successful, contributing members of society through gainful employment. Nicole from Maryland and Gillian from Texas share the importance of Medicaid support for their children in relation to continuing employment and successful careers:
Being Able to Stay in Your Own Home
Many critics of Medicaid decry the cost labelling those who depend on it as a strain on society. But Elaine (North Carolina) and Susan (Illinois) outline how these services have allowed their children to stay at home preventing the need for their children to be forced into an institution which would cost the taxpayer much much more:
“It is an unfortunate fact that some children who are medically complex pass away. We neglect to talk about how to best serve these children, who may or may not have access to comprehensive palliative care and hospice services through insurance, and rely on Medicaid to allow them to live at home. My daughter was one such child. Having Medicaid allowed her to stay at home on hospice for the last two years of her life, with home nursing care meeting her needs. Without these benefits, she would have had to be hospitalized for months or even years in the intensive care. Not only would this care be more expensive, but it would rob us as a family of those last precious moments we celebrated while she was in hospice. Medicaid provides critical services to children on hospice and children who are dying. We cannot forget these children and their families.” - Susan, mother of Karuna (passed away at age 11 in 2014), from Illinois
Overwhelmingly, the parents that submitted their child’s story to us talked about experiencing bankruptcy or extreme poverty if Medicaid services are cut or lessened:
Quality of Life
Finally, many parents, such as Shelly from Alaska, shared about the life and quality of life that Medicaid gives to their children. These life-sustaining services have played vital roles in these little lives:
I will leave you with this final quote from Marta, a Little Lobbyists mom who has joined us on the Hill multiple times with her daughter, Caroline. Here is just a little bit of her story:
Thank you to all of these parents and many more who submitted their stories to us to take to their Members of Congress. You all have helped us put a face on the need for a strong, robust Medicaid program in every state. To share your family's story with us, please visit our storytelling form by clicking here.