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:

“Among other things, Medicaid has provided my daughter with overnight nursing so that I can sleep at night, knowing that she is as safe as she can be. Before nursing I was so exhausted from her care, lack of sleep, and fear that she'd have a seizure overnight and I'd find her not breathing in the morning, that I couldn't give her the best care possible day or night...let alone do anything beyond that.”  - Hillary, mother of Esmé (6yo), from New York

“Losing Medicaid would mean losing our nursing, which would mean I can no longer work outside the home - resulting in the loss of our private insurance.” -Ellen, mom of Owen (14yo), from 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:

“I work as an unpaid nurse 24/7.  It would take a PDN (making $20 or more an hour) to replace me.  Going out and getting a job so I can get him off of Medicaid isn’t currently an option.  We need Medicaid to remain available as it is for kids like Sam.” - Sheila, parent of Samuel (13yo), from Idaho

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:

“My husband and I have good jobs and good private insurance. I have a professional degree and work as a lawyer. My husband works in management at one of the country's largest property management companies. We own our home, pay our taxes, contribute to economy as consumers, and generally work to be responsible citizens. We planned for years to achieve our professional and personal goals. What we did not plan for and could not have prevented was our son's medical condition. We did not plan to spend months in the hospital watching our baby fight for his life. We did not plan to face the choice of giving our son a tracheostomy or leaving him in a nursing facility to prevent his death. We did not plan the millions of dollars of surgeries, nursing care, tests, ambulance rides, hospital stays and medical equipment that he needs to stay alive and healthy. Everyone needs affordable health care and the option to enroll in Medicaid or a Medicaid waiver because as parents and as human beings we simply cannot plan for good health.  Sometimes, the smallest, most innocent among us are born with the most fragile bodies. America should support a healthcare system that doesn't require bankruptcy to deal with unplanned health crises.” - Nicole, mother of Pierce (4yo), from Maryland

“My husband and I are both public school employees.  I am a high school principal, and he is a middle school assistant principal.  Both of us have good insurance from our jobs. Without the ACA, Raphael would have maxed out his lifetime insurance cap during his first hospital stay.  Thankfully, in November he qualified for Medicaid through a special waiver program. My insurance only covers 7 weeks of home nursing a year. Medicaid has allowed him to receive in home nursing, physical therapy, occupational therapy and speech therapy.  Without this waiver program, we would have had to either have one parent quit our jobs or put Raphael in daycare and risk his health. I believe that Medicaid kept Raphael out of the hospital during his first cold and flu season. Medicaid has literally been a lifesaver for him.” - Gillian, mother of Raphael (1yo), from Texas

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:

“Medicaid's Home and Community Based Services and Supports (such as Medicaid waivers like CAP/C) allow people with disabilities to live at home, which is generally far less expensive than their living in an institution. Cutting these services will end up costing the government much more because Medicaid is the primary funding source for long term care, including nursing homes and other institutions.” - Elaine, mother of Lydia (5yo) and Carol (5yo), from North Carolina

“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

Financial Security

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:

“Rowan spent a total of 286 days in the NICU and PICU. Without Medicaid/waiver programs, we would have gone into bankruptcy—which would have been a shame since we are small business owners who continually donate our services for others. Currently, her monthly supplies total more than $1000—and that's just what's covered by Medicaid. We pay an additional $500/month for the rest.” - Maggie, mother of Rowan (16 months old), from Georgia

“I am extremely terrified. I am a waitress that makes $2.25 an hour. Without Medicaid I will not be able to pay for the medications, doctors, supplies, or home health care that Gunner needs to have in order to survive and thrive daily. Without these things my sweet boy WILL NOT LIVE!!!” - Carol, mommy of Gunner (3yo), from Kentucky

“Cuts to Medicaid could be catastrophic for Jonathan and our family. We are a middle class family - we don't have a million dollars to pay for his care, to hire nurses, to buy medical equipment. Cuts to Medicaid likely will end up cutting his health benefits, and though we will do whatever we can to bridge the gap between what healthcare he needs and what healthcare he would get, we will likely go bankrupt trying, and I don't know that we will be able to get him what he needs, even then.” - Jessica, mother of Jonathan (3yo), from Massachusetts

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:

“Saved her life!  Without Medicaid and services available, she wouldn't be able to speak or walk. Couldn't go to school or have friends and live with her adopted family who adores her. She would have died or been institutionalized (worse).”  - Shelly, grandmother of Claire (9yo), from Alaska

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:

“Caroline didn’t start showing symptoms until after she turned 1 -- when she still wasn’t walking or even crawling yet. Then, around 14 months, she started choking on her food, she could no longer get her words out, and she struggled to hold on to her toys. My husband and I got the official diagnosis when she was 17 months old. We were stunned and completely devastated, but we promised her that we would give her a happy and full life no matter what. I never imagined that I would have a child who would depend on us for every aspect of daily living for the rest of her life. And I certainly never imagined I would have a child who would rely so much on a government program like Medicaid. But that’s the thing about life, everything can change in a second, and you never know when you or your loved one will have to turn to a program like Medicaid just to stay alive. Caroline and millions of kids like her who are disabled and chronically ill deserve a chance at life.” - Marta, mom of Caroline (7yo), from Virginia

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.

ThoughtsLaura Hatcher