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I am the mother of a delightful little girl named Emily. She is quick to laugh and make others laugh as well. She has a spunky personality and a bit of a twisted sense of humor.
Unfortunately, however, she was born with a very rare dwarfism called Campomelic Dysplasia. Her rare condition is associated with multiple health problems and so she is extremely medically fragile. Because of her medically fragile status, she receives MDCP (Medically Dependent Children's Program). I have recently been made aware of the STAR Kids Managed Care Mandate which is scheduled to go into effect in November of this year. This will be devastating to the health of my child and many like her.
Before Emily was born, my husband and I knew nothing about children with special health care needs. We thought, as so many people do, that any pediatrician would be able to handle Emily's medical needs. We thought that pretty much any specialist with proper credentials would be able to provide her with appropriate care. We were very wrong!!!
We began to be concerned with the care our daughter was receiving and so began researching and talking with other parents of medically fragile children. We learned through trial, and unfortunately lots of error, that just because a specialist has proper credentials, that does not make them able to handle the needs of a fragile child.
During our “naive years” as I have come to refer to them, we had our daughter in the care of the physicians at the children's hospital in our home town, Fort Worth, Texas. The hospital actually has a wonderful reputation for caring for children. However, Emily's health care needs were a bit “out of their league.” I can tell you with certainty that if my husband and I had continued to take our daughter to that facility for her care, she would not be alive and with us today!!! There were many “oopsies” that occurred while under the care of those physicians. None were intentional, the doctors simply were in over their heads. Because of their lack of ability to keep Emily in stable condition, she spent much of her time in the hospital. She was literally averaging a 5-10 day hospitalization about every month to six weeks. Not only was this very hard on the family, it was terribly expensive! My husband and I came to realize that we had to find different doctors.
Over the years, we have managed to assemble a terrific team of specialists who care for our daughter. They are in Dallas, San Antonio, Cincinnati, Southlake, Bedford, Flower Mound, and Fort Worth. We have learned that it is definitely worth the commute to get the care that Emily needs. She stays OUT of the hospital most of the time and is much healthier under the care of her current specialists. She's happier! We're happier!
One of the requirements of the STAR mandate is that the recipients of traditional medicaid will be forced to choose and be limited to a managed care plan (HMO) which has no out of network benefits. This mandate currently includes MDCP kiddos. The HMO's are set up regionally, so parents are limited to the physicians in their immediate area to provide care for their children. That is totally unacceptable for these medically fragile kids.
Most doctors who have an interest in a very specialized field end up congregating in certain facilities. For example: Texas Children's in Houston has one of the top cardiac departments in the nation. I personally know several parents who commute to Houston for the care that these top pediatric cardiologists can give to their children because their kids are too complicated for the local doctors.
My daughter had a lethal scoliosis. The only place in Texas where the procedure was performed to treat her scoliosis and still allow her to grow was in San Antonio, Texas. My daughter has been commuting to San Antonio regularly for surgery since she was 3 years old. She has room in her chest cavity for her lungs to breathe thanks to the surgeons in San Antonio. Had we not been allowed to commute out of our area for the procedure, her bones would have slowly suffocated her as she grew until she died.
One of the top surgeons in Fort Worth botched a surgery on Emily's airway when she was 2 years old. Her airway was completely scarred shut and she was left in the very dangerous situation of having her tracheotomy as her only way of breathing. A few years ago, the “airway guru,” Dr. Robin Cotton, at Cincinnati Children's Hospital in Cincinnati, Ohio, built her a new airway. She will never speak because of the damage that the Fort Worth surgeon did, but she has an intact airway which is much safer than before. The surgery was tedious and difficult. As Dr. Cotton says, “She's a complicated girl.” The surgery would not have been possible from just any ENT. That being said, it is important to her life and well-being that she be allowed to seek and obtain medical care from the people most able to meet her needs.
It is of utmost importance that the MDCP recipients be exempted from the STAR Kids Managed Care Mandate!! These medically fragile kids have to be able to obtain medical care from the specialists who are most qualified to treat their unique needs. This mandate will force parents to use the local doctors, which, our experience has shown, will end up with frequent and prolonged hospitalizations that are expensive and unnecessary. Please help the MDCP kids to be exempt from the STAR mandate.
The Lumpkin Family
There is no doubt in our minds that our daughter, Chloe Fields, has the quality of life she has today because of what Medicaid and the Medically Dependent Children's Program have allowed us to do for her. Chloe is 7 years old. She is happy, has a great sense of humor, and is very social. She attends school and is well known and loved by her fellow students.
Chloe has Leigh Syndrome which is a fatal Mitochondrial Disorder and has numerous difficulties due to this disorder. She has been diagnosed with lesions of the brain, dystonia (muscle contractions), Cortical Vision Impairment, hip dysplasia, kidney reflux, dysphagia (speech/language disorder), low tone/high tone, heat intolerance and dysphagia (swallowing difficulties). She is fed through a GTube, uses Ankle Foot Orthotics, and is incontinent. Chloe is nonverbal and nonambulatory. She is completely dependent for her care.
Due to the many medical complications Chloe faces daily, she has a team of physicians that care for her. Besides her pediatrician, Chloe is under the care of 11 specialists, a dietician, occupational therapist, physical therapist, speech therapist, and vision impairment specialist. She utilizes a DME for medical supplies, home health agency for nursing care, and an equipment supplier. We are fortunate that Chloe's pediatrician is outstanding, understands Chloe, is aware of her complexities, works well with all of her physicians and other care services, and knows our family. We could never put a price on what he means to the wellbeing of our child.
Can you imagine losing any piece of this coordinated care? It has taken us years to put together the right team. Not all physicians understand the complexities of Mitochondrial Disorders. Plus, Chloe is the only documented person in the world with a particular gene mutation. It is critical she has the right medical professionals in place. Starting over through a MCO would be detrimental to Chloe's well being and potentially fatal. Being able to find and select the right specialists has allowed us to keep Chloe alive. It has allowed us to get her critical medical care in a timely manner, which is vital with a Mito disorder. It has allowed for decreased hospitalizations, increased quality of life, and even given Chloe the ability to go to school.
Chloe receives nursing care through traditional Medicaid and the Medically Dependent Children's Program. This has been important for Chloe but also our family. It's another set of eyes looking at Chloe and keeping her healthy. Having nursing care allows Chloe to safely attend school. It allows us to leave Chloe in capable hands while we attend activities to support her brother. Due to her dystonia, Chloe does not sleep well almost every night and having nursing care allows me to rest during the day when the night has been particularly difficult. Chloe's care is full time and hands on because she can not care for herself. It is physically and mentally exhausting at times. Having nursing coverage gives me the breaks I need so I can better care for Chloe. Most importantly, it allows for us to care for her at home.
When we started this journey, our private insurance capped out on services for Chloe and we were panicked as to how we were going to be able to provide for our daughter. Qualifying for MDCP changed all of that. We had to prove that Chloe was medically fragile and dependent for care to receive services through MDCP.
Chloe's care is complex. There is a fine balance that has to be maintained by her medical team to keep her stable. When we do end up in the ER, the emergency physicians are at a loss as to how to care for her. It takes a coordinated effort from her pediatrician, metabolic geneticist and her outoftown mitochondrial specialist to guide the hospital physicians. Restricting the physicians, the care facilities and the service area will adversely affect the care of my child.
Please exempt the Medically Dependent Children's Program from this transition. These are medically fragile children with complex needs who will not thrive under a restrictive medical plan. These children need quick access to their medical teams, who know them, so they receive appropriate treatments in a timely manner that can keep them home, healthy and safe. Our family is already under significant stress and restructuring Chloe's medical care would be a tremendous burden mentally, emotionally and financially.
Cedar Park, TX
My son’s name is Preston Hall. He is 8 years old and I thank God for his life every day. He has changed every part of who I am to my core and that has all been for the better. I have learned the true preciousness of life from the moment of his birth. I have learned that many of the things that I thought mattered in this life truly didn’t and I quickly learned about the things that matter the most. I have also learned what pure, innocent joy looks like and I get to see it much more often than most. Preston will teach me much more in this life than I will ever teach him and he probably already has.
Preston was born at 30 weeks along with his twin brother Luke so he came into this world fighting to live. As a newborn we quickly learned he had a craniofacial disorder – trigonocephaly – and he started missing milestones that his twin brother was mastering. We soon felt his global delays were not likely due to his prematurity. Something much more serious was wrong. As a baby he suffered from severe gastroparesis (delayed stomach emptying) so severely he vomited 10 times a day – full feeds. He spent many days at Children’s Medical Center and then at Medical City Children’s for failure to thrive, and by that I mean clinging to life, because he could not keep any formula down and his temperature would drop so low he needed the “bear hugger” to warm his listless little body. He was treated for meningitis as a last resort because physicians were “at a loss” for a diagnosis or treatment plan. His head was still a squishy, swollen bowling ball from the cranial vault remodel surgery he had had just 1 month earlier. My husband and I spent nights no parent should ever have to endure praying that our 11 month old baby would live, all the while watching his twin brother lay in the hospital crib next to him with failure to thrive as well.
Preston has not known a life without complex medical conditions. He has a craniofacial disorder, which is rare, a genetic syndrome called PTEN Hamartoma Tumor Syndrome, which is more rare and unrelated to the craniofacial disorder and can cause tumors or polyps to grow in his body along with developmental delays, Autism Spectrum Disorder, Mild Cerebral Palsy among many other medical issues. These disorders cause him to vomit, have chronic constipation requiring him to need digital stimulation and enemas to relieve. He gags on food that he finally learned to chew minimally at 4 1/2. He receives breathing treatments for a floppy airway that causes him stridor and vomiting and he goes to feeding therapy to overcome years of oral aversions from vomiting so constantly during the first year of his life among many other therapies.
Building a team of medical professionals includes Preston’s pediatrician, who has seen him since birth in the NICU and continues to care for him to this day, has taken years to assemble. This team has historically allowed Preston to remain medically stable and safe at home. However, being forced to rebuild a medical team of professionals and facilities that are contracted with one of the available MCOs for our area will limit Preston’s access to physicians, therapists, and facilities. Immediate access to specialty care is vital for children like Preston with complex medical issues and disabilities. This is crucial to prevent complications and promote long term stability Preston.
We also currently chose to see one specialists who is not a Medicaid provider but on our primary private health insurance plan because they keep Preston medically stable and provide care that best suits his complex medical needs and two rare disorders. We pay out of pocket private insurance copays when surgery or procedures are performed by this physician but often times the facility, anesthesiologist or imaging center are covered by Medicaid. We chose to do this to keep Preston as healthy and stable as possible because this GI physician provides the most appropriate care for him.
His current and now going on 7 year GI physician was the only physician able to care for him when the GI physicians at Children’s were failing to provide adequate care and putting Preston’s life in jeopardy. This will no longer be allowable with the move to MCOs and will inhibit access to appropriate care along with threaten the wellbeing of my medically fragile child. Also from a cost perspective, not allowing my family to fully utilize our primary private health insurance will force increased reliance on Medicaid and translate into even greater costs for the State of Texas.
At the time of Preston’s cranial vault remodel we had to jump through hoops for an out of network exception with our primary insurance company (and only at the time because we were unaware of MDCP) for his surgery due to all the craniofacial surgeons in Dallas grouping together to make the decision to not be in network with any insurance company. It was insanity and caused terrible stress during an already stressful time of having a sick baby who needed a surgery that was possibly deadly.
We were forced to prove that there was no provider in the area that was a craniofacial surgeon available to perform the operation Preston needed. For a surgery that risks your child’s life and involves exposing a large portion of your child’s brain for an extended period of time a parent’s needs to have a choice in who they feel most comfortable working on their child. Not having that choice would be a living nightmare. For children who face life threatening surgeries year after year dealing with a limitation based on a managed care’s network of providers is a parent’s real life hell. My family dealt with this situation once and it will forever stay with me. It gives me much grief to think there are parents whose children need continual surgeries and procedures and could face an issue similar to this.
The Medically Dependent Children Program was designed to support families caring for children and young adults who are medically dependent. Our children and families already face enormous and stressful challenges on a daily basis. In these children’s short lives they face and endure more than most adults will face in a lifetime. A forced moved for the MDCP program to managed care organizations greatly increases the burden on parents and children, as well as, places unnecessary restraints on our ability as caregivers to create and maintain an appropriate plan of care at home. The STAR Kids mandate will adversely affect the health and wellbeing of our state’s most fragile and medically needy children by disrupting care, and placing more restrictions on care for fragile children who are already an uphill battle on a daily basis. As taxpayers, citizens and parents we believe that it is in the best interest of the State –financially, politically and morally—to exempt the Medically Dependent Children Program from this transition.
Please help to protect the weakest and most vulnerable of our tiny citizens who have no voice or say in this process by exempting the Medically Dependent Children Program from the STAR Kids mandate.
My daughter, Ainsley Grace, is part of the Medically Dependent Children’s Medicaid waiver program (MDCP). She was born at 34 weeks and had more problems than anyone expected. She spent time in the NICU, and then 6 weeks inpatient at Dallas Children's Hospital before being referred to Boston Children's Hospital for further investigation. We were seen all over the state of TX first. She went to Texas Children’s Hospital in Houston, as well as Memorial Hermann Hospital. No one could figure out the entire overarching diagnois that encompassed all of her issues.
Ainsley was born with a laryngeal cleft, hypotonia, bradycardia, apnea, and stomach motility issues. She has trouble with her autonomic nervous system in regulating her temperature and runs very high fevers and then has trouble maintaining her body temperature at other times. She has had pneumonia multiple times and really struggles to keep healthy. Her immune system has some deficiencies. She was aspirating constantly until the doctors at Boston Children’s Hospital discovered and repaired the cleft. BCH is one of two speciality centers In the US for this diagnosis. She had a fundo surgery on her stomach at 4 months old to save her from aspiration of reflux. She spent 100+ days in the hospital in 2 years so far.
We tried to do it on our own for 8 months before finally finding out about the MDCP program. We have private insurance, but it wasn't enough. We were in more medical debt than we knew what to do with . We were spending every penny trying to get Ainsley all of the care that she needed, including home care nursing.
Ainsley was on oxygen at home her first year of life and still has a feeding tube. She sleeps on a pulse ox to monitor her breathing and heart rate. She still needs oxygen at times. She needs braces for her legs due to her hypotonia. She takes an antibiotic daily to try and help her body fight off infection. She requires multiple drs. visits a month just to maintain medical baseline. We are getting closer to a big picture diagnosis with Ainsley. She will be starting a med soon to hopefully help with her walking and gait. We have worked very hard to establish a care team that keeps her medically stable and out of the hospital. The new mandate to move to MCOs threatens all of this. Changing everything and making hoops for us to jump through just to get and keep the care that our kids have been receiving is not doing our little ones justice.
Ainsley needs her specialists, therapists, and her care team. The new MCO would consider many of her doctors in Texas, including her pediatrician, and Boston "out of network," despite the fact that our primary insurance covers all care at 80% anyways. I am asking you to exempt the fragile children in the MDCP program from this mandate. While it has its place both financially and in preventative care of healthy children, it does not fit the bill for our medically fragile children. My daughter deserves better. Thank you.
Abby & Brenton Whitaker