With All Our Might...Elevating Child Health Policy

Congressional Briefing Addresses Why Medicaid Matters for Kids

On Monday July 16, the Congressional Children’s Health Care Caucus helped host the last briefing in a four-part series addressing why Medicaid is essential to children’s health care. The briefing focused on reducing “red tape” barriers for children enrolled in Medicaid. In addition to providing a background on the issues most important in pediatric mental health, panelists discussed various initiatives that work to reduce administrative burdens to patients, and improve quality of care for children. The briefing was sponsored by the Children’s Hospital Association (formerly the National Association of Children’s Hospitals), the American Academy of Pediatrics, Family Voices, First Focus, March of Dimes, and the Georgetown Center for Children and Families.

Panelists included:

• Kate Linzey, Mother of Annabelle, a child caught up in red tape
• Renee Fox, MD, FAAP, Associate Professor, Division of Neonatology, Department of Pediatrics, University of Maryland School of Medicine
• Jodi A. Ray, MA, Project Director, Florida Covering Kids & Families, University of South Florida College of Public Health
• Stan Dorn, JD, Senior Fellow, Health Policy Center, Urban Institute

Congresswoman Kathy Castor (D-FL), a co-chair of the Congressional Children’s Health Care Caucus, gave opening remarks at the briefing, and spoke to the relevance of the topic given the Supreme Court’s recent decision upholding the Affordable Care Act (ACA). Said Castor, “It’s timely to talk about how we work to make health care work better for families in America. We need to take the right next steps for our families as we work to expand Medicaid in the states.”

Kate Linzey, the mother of a young daughter named Annabelle spoke to the “red tape,” she and her family experienced while securing her daughter’s Medicaid application. She spoke to steps to help families like hers, with permanently disabled children eligible for Medicaid their entire lives, to better access coverage such as automatic renewals and expressway eligibility. She also spoke to how critical the Medicaid program, and the services it covers, is to her family, “Without Medicaid, we would be unable to care for our child.”

Providing a clinic perspective was Renee Fox, MD, FAAP, an associate professor in Neonatology at the University Of Maryland School Of Medicine. Dr. Fox spoke to the difference between eligible and enrolled, and the need to enroll all Medicaid-eligible children in the program. She also spoke to CHIPRA (Children’s Health Insurance Program Reauthorization Act) provisions that need to be included in the budget process including 12-month continuous coverage, automatic renewals, presumptive eligibility and express lane eligibility.

The third presenter, Jodi Ray, Program Director of the Florida Covering Kids & Families program, spoke to barriers at the state level in reducing red tape in Medicaid. Medicaid provides access to health care for over 1,736,000 of Florida’s children. Ray spoke to the importance of Medicaid to these children as it means children receive the care they need like well-child check-ups, medical, vision, dental, and hospital care. She also spoke to the additional pressure state Medicaid programs face as more children are enrolled in Medicaid due to the recession.

The final presenter, Stan Dorn of the Health Policy Center at the Urban Institute discussed some of the solutions that are being used in states to reduce “red tape” barriers in Medicaid. Specifically he spoke to the state of Louisiana’s Medicaid program which has seen major success in improving enrollment rates for children. This success was due to recent innovative initiatives in electronic case records, automatic renewal and express lane eligibility.

For More Information Contact: Jenny Robbins, Assistant Director of Federal Affairs, Children’s Hospital Association, 703-797-6040, [email protected].

Julia and Mia's Stories

by Gina Paparella

I am forever endebted to Childrens' Specialized Hospital as I not only had one child who desperately needed their services, I had two.... 

Julia was born a little smaller than the average baby at six pounds but everything seemed as perfect as you could dream for in a newborn. All her fingers and toes were there and she took to nursing easily. At her nine month check up, the doctor told us that Julia had dropped her growth curve. She seemed to be tolerating the solid foods that were being introduced and she was nursing well, so no intervention seemed to be needed at the time. At her 12 month visit, she dropped again and the doctor was concerned. We started the search for answers as to why she was not growing. Many tests were done over the next six months. Because her growth continued to decline, she was diagnosed with "failure to thrive."

The next two years were years of panic as we desperately tried to find out what was happening. In that time, she began to to slowly refuse almost all the food offered to her. Several diagnosises were discussed as possible causes but the additional testing revealed that it wasn't any of them. We spent every 3 weeks bringing her to the hospital to be stripped, weighed and all her body parts had to be measured. At every visit, my heart would break as she would scream. She would reach her hands out for me to rescue her as she was unknowning what testing was going to be done this time.

We had to endure putting her under anesthesia because gastro exploratory surgery was necessary as her significant drop off the growth chart became life threatening. It was discovered that she had many food allergies that caused a baby ulcer and it was too painful for her to eat. Her allergies went undetected because her reaction was happening on the inside, as she had sores throughout the lining of her stomach.

We were immensely grateful for our experience at Children’s Specialized Hospital because their nutritionist and feeding team was instrumental in putting her back on the chart. They were so creative in their discovery of finding what works.  Because of their intervention, Julia was spared the need of a feeding tube.

As we seemed to be working on getting out of the woods with the feeding issue, another one began to emerge. Julia was developmentally delayed with her speech. She could label things but couldn't put words together. She was approaching her 4th birthday and only had a few two-word utterances. Her speech therapist never gave up on her. Julia was a bright, blue eyed preschooler who could only communicate through the sign language her therapist taught her. She was five years old when she began to speak sentences. Julia was diagnosed with Central Auditory Processing at age eight. We now understood the reason for the speech delay. 

We also have another daughter, Mia. She is 3 ½ years younger than Julia. All of Mia's well visits in infancy were stellar. She was a healthy baby girl and growing well. As her toddler years immerged, it was noted that she also had a delayed in language. Something else seemed different, she was more active than her other two siblings and she craved input. By input, I mean pressure; she was very “tiggery”, constantly jumping and bouncing, which gave her pressure in her feet. She was always climbing, that gave her pressure in her hands as well as her feet. She could scale a wall with ease. Brendan and Julia, her siblings, called her “spider baby”. She also loved bear hugs as that gave her body the pressure it craved. She seemed hypersensitive to fabrics as she always wanted to be without clothes. It was extremely difficult to get her dressed. At times, life with Mia was not easy. We already had very positive experiences at Children’s Specialized Hospital so we turned to them for evaluation. Mia has sensory integration disorder. As the Occupational and Speech therapists assisted Mia in leaps and bounds of growth, they also assisted us as a family because they taught us what to do at home so we can continue her growth when she was not in therapy. Their actions were always above and beyond any expectation a parent can have.

It is difficult to remember the journey without wiping the tears. I feel so grateful to Children’s Specialized Hospital for the quality of life they gave my children that they would not have had without them.  I whole heartedly believe Julia wouldn't be where she is today if it was not for the compassion and expertise of the team that brought her out of a life threatening situation and worked so diligently to give her the gift of language. Mia still receives therapy but I know she will be an amazing and productive adult. She is a very intelligent and resourceful little girl. The sky is the limit for her. I sincerely believe this would not be the case without Children’s Specialized Hospital. The amount of gratitude felt for the hospital cannot be measured that is why I am elated to be a part of this special cause for Family Advocacy Day. The kids are also equally as excited to be in Washington and to be able to be a voice for all the children of our country.

Traveling with Children

by Cathy Wilson

I remember packing for a long weekend before I had kids - it didn't take long.  Pack up a few outfits and quickly pass through the bathroom for toiletries and cosmetics, and I was done with packing.  Make sure the car had gas and buy a few snacks and I was ready to hit the road. Things are a bit more complicated when we travel with our two daughters, because when you are traveling with a child, especially one with special needs, planning is key to success. 

I love lists - they are the only thing that can keep me even half-way organized.  When traveling, a good packing list is key.  If an item isn't on the list it is very likely to be forgotten. I have a master list that I use as the base for most of our trips and a separate list for our annual camping trips. I try to think about everything we use on a daily basis (e.g., clothes, toothbrush, special stuffed animals) and things we occasionally use (e.g., a thermometer, nail clippers) when making my list.  Looking at the master list after you get home from a trip also helps because you can add or delete items while traveling is fresh on your mind.

For Mary Quay, who has spina bifida, the packing list includes not only her clothes, but also  prescription and non-prescription medicines, medical supplies, and a CD of her most recent CT scan images.  For the most part we travel by car, but for our upcoming trip to D.C. we will fly, which means we need to pack these extra items carefully, taking into consideration airline baggage fees.  I have recently learned that some airlines will let you check a bag with only medical supplies free of charge.  We will definitely be doing that for this trip! I will bring some of our supplies on board with us in a carryon in case our checked luggage is delayed, but I also have some friends who won't check any medical supplies out of concern that their luggage will be lost. We will check Mary Quay's stroller at the gate so we can use it in the airport and will just bring her crutches on the plane with us.

Another part of packing is making sure I have plenty of things to entertain the girls during the trip.  When we drive, their main entertainment is a portable DVD player and movies from Redbox.  With Redbox, you can rent most movies for $1 per night and return them to any other Redbox kiosk -- even in another state!  There is an app to help you find the closest one. We also bring plenty of books, crayons and coloring books,  notebooks and pens, small toys like Barbies and Polly Pockets, and of course lots and lots of snacks!   When flying we don't bring the DVD player, so I usually bring some new books and small toys to help keep them entertained.  It is amazing what you can find for a dollar if you shop before your trip.  We avoid airport gift shops since they are usually so expensive.

Once you arrive at your destination you will want to make sure you know where to go and what to do to make the most of your trip.  I love planning trips and figuring out what new things we can do at each destination.  The Internet is a great tool and we also will sometimes  check out books from the library to help educate the girls on where we are going or stop by AAA for tour books and maps.  Talking to friends who may have also recently visited or people who live where you are going is a great way to find out more information.  In D.C., we can't wait to visit the many museums and monuments that will be so close to our hotel.

Traveling with kids is definitely harder than traveling without kids, but we love the wonderful memories we make as a family as we explore different parts of our beautiful country and experience once in a life time events like Family Advocacy Day.

The Wilson Family will be representing Le Bonheur Children's Hospital at Family Advocacy Day

The Johnston Family's Story

by John, Nancy, Mike and Emma Johnston

On April 18, 2011, we took our 13 year-old son Mike to Children’s Hospitals and Clinics of Minneosta in St Paul. That same day, he began receiving treatment from Children’s. It turned out that Mike had a cancerous Germinoma tumor that was blocking the flow of cerebral spinal fluid. The fluid was building up in his skull, putting pressure on his brain, and causing him to have tremors and headaches. As we began Mike’s cancer journey, it became obvious to our family that Children’s treated not only the patient, but  the entire family. Every staff member that came into our room introduced themselves to all of us, including Mike's 7 year-old sister Emma. We felt secure with the staff sinc e they all made time for us and made us feel like we were their only patients at that moment.

Throughout Mike’s treatment, several important events were planned. The first was American Cancer Society Relay for Life in White Bear Lake, MN. Mike was one of the featured speakers. The oncology team scheduled chemotherapy and other appointments to make this special event possible for Mike and our family. The second major event for Mike that summer was his junior high school trip to Washington DC. This was a can’t-miss since the teacher in charge was Mike’s favorite teacher, and helped Mike get passionate about history. Mike enjoyed the monuments, the museums and the capital and was able to take it all in even though his blood counts were low.

Throughout our family’s journey with Children’s Hospitals and Clinics of Minnesota we all felt blessed to have this institution charged with our son’s care. We felt so proud to have Children’s in our life that our family made a commitment to give back. Mike is now a member of the Youth Advisory Council and both parents are active in the Families as Volunteers program. 

All of this led to the opportunity for our family to journey to Washington, DC to advocate on behalf of Children’s Minnesota for Family Advocacy Day. We are all very excited for this opportunity to be able to give back. We even accepted this opportunity knowing that we would be travelling on Emma’s 9th birthday. We can hardly wait to see the sites as a family and meet many wonderful people that have also been touched by children’s hospitals around the county. See you in DC!