Anna

Anna

Age 5, Virginia

Meet Anna.  She is a typical 5 year old in many ways. She loves to play with her brothers. She loves Play-Doh and to play with her dolls. She is very into princesses right now. Anna loves to sing along to songs from Disney movies.

Anna’s medical diagnoses are cerebral palsy, tracheal bronchial malacia, subglottic stenosis, chronic lung disease, metabolic bone disease, allergies, eczema, and global developmental delays. She has a tracheostomy to breathe and uses a gastric tube to be fed. Anna needs oxygen at home intermittently for when she gets sick. Anna and her twin brother were born at 25 weeks in Arkansas. We became their foster parents shortly after birth. The prognosis all along was very grim for Anna. Several times a DNR was signed for her while she was still a foster child. After her second birthday we were fortunate and able to adopt her and her brother. In 2014 Anna developed a bone condition that caused over 30 bone breaks in 18 months. Due to this new condition the military stepped in to have my husband move so that she could be seen by Walter Reed in Maryland. In May 2015 Anna and I were flown by medical flight to Bethesda.

Anna’s current medical needs includes several machines to maintain her life here in the home. Anna is wheelchair bound at times. She also needs a medical bed to keep her safe while she is asleep. Anna attends 6 different therapies a week and has 3-6 appointments with specialist a month. We are currently taking her to Cincinnati Children’s Hospital for some of her more specialized care.

My husband has spent the last 22 years in the US military. Being military has afforded us very good health coverage but it does have some flaws. In order for Anna to be seen in Cincinnati we have to have a copay. Her cap ($1,000) was met 4 weeks after the plan started. Anna also needs a specific machine that the military health system deems experimental. This machine costs around $15,000. Medicaid has picked this cost up for us. Without this machine Anna spends 75% of her life in a hospital.

Once my husband retires from the military we will be responsible for a much larger copay. In Virginia this copay should be paid for by Medicaid. If this bill goes through, we could lose Medicaid. This would be devastating for our family. We could be one illness away from being bankrupt. The lifetime caps also affect us. Anna spent over 100 days in the hospital in 2015. Her medical bills were well over $1,000,000 for that visit alone. The clause about pre-existing conditions also applies, and applies to multiple members of our family.

Medicaid also pays for her nurse to attend school with her. Without a nurse Anna cannot attend school. She has came so far; she deserves to see how far she can go.

We know the ACA isn’t perfect but it seems more effective to fix what we have rather than recreate the wheel.

Anna  has fought so hard to be here. She was once considered to be in a vegetative state, but look at her now and she is head of her class. Spend five minutes with her and you will see how truly amazing she is.

You can read more about Anna's story here: www.speaknowforkids.org/annalyse_s_story

Submitted by Anna’s mother, Angie

Melanie

Melanie

Age 5, Arizona

Meet Melanie. She’s five years old and loves swimming, playing catch, and jumping on her trampoline.

Melanie has a long list of medical diagnosis which includes Trisomy 21, Xp 22.33 deletion, Complete AV Canal Defect, sensorineural Deafness, and many more.

Melanie’s biggest medical needs currently revolve around the diagnosis of Xp 22.33 deletion and the way it presents as Glycogen Storage Disease. As her parents we battle daily to keep her blood sugar steady via G-tube feeds and getting her to grow. At 4.5 she has barely hit 30 pounds and is tiny.

The second largest issue revolves around her being Deaf. Accessing medical care for her cochlear implant has been difficult given her co-morbid diagnosis of Trisomy 21.

Access to affordable healthcare means the world to us. If this bill passes, our daughter’s Medicaid benefits will likely be cut and the stark reality of a cap on benefits could not only crush us financially but there is a very real possibility it could put her life in danger.

Medicaid paid for Melanie’s open heart surgery which exceeded 1 million dollars. If she had not had access to Medicaid we would have been required to pay a deposit of 1/10 of the estimated cost to the hospital prior to them performing her surgery at 8 weeks old.

How would the changes in the proposed healthcare bill affect Melanie? Once her dad retires, Melanie will likely rely heavily on Medicaid to offset the large costs of medical care. Currently Medicaid pays all of our co-pays and for items Tricare refuses to cover such as thickener for formula that is required to take liquid by mouth safely.

Melanie is only 1 of the 4 children we have in our home with all 4 having varying degrees of special needs and all 4 qualifying for Medicaid based on those needs.

Submitted by Austin, Melanie’s mother

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Pierce

Age 4, Maryland

Meet Pierce. Pierce is four years old. He loves playing with his light up train and going to the aquarium.

Pierce was born with Moebius Syndrome, a rare craniofacial/neurological disorder that manifests itself primarily in facial paralysis. Like many people with Moebius Syndrome, Pierce was born with a small chin (micrognathia) and was diagnosed with Pierre Robin sequence.  Pierce was born with an internal cleft palate that was repaired surgically when he was 13 months old.   Pierce has been diagnosed with Cortical Visual Impairment, a visual dysfunction resulting from injury to visual centers of the brain. Pierce is also deaf and has global hypotonia and developmental delays.  He has been diagnosed as having myoclonic seizures.

Pierce has a tracheostomy (placed at 6 weeks old) and requires BiPAP (Bilevel Positive Airway Pressure) delivered through a ventilator when he sleeps.  Safe monitoring of Pierce’s tracheostomy requires 24 hour alert and awake caregiving to prevent suffocation due to obstruction or as a result of seizures.  Pierce receives all his nutrition through a feeding tube (placed at 3 weeks old).  We monitor Pierce’s oxygen 24 hours a day with a pulse oximeter.  Pierce requires nebulized medicine 2-4 times daily to assist his pulmonary functions and prevent pneumonia.  When Pierce is sick he requires oxygen.  Pierce has been hospitalized at least five times during his three short years for illness, (in addition to the 66 days he spent in the Neonatal Intensive Care Unit) each stay lasting an average of 1-2 weeks and most stays are in the Pediatric Intensive Care Unit (PICU).  Pierce has also had a number of surgeries and he is regularly monitored by gastroenterology, pulmonary, neurology, otorhinolaryngology (ENT), audiology, and genetics as well as his regular pediatrician.

Affordable quality healthcare means everything to our family.  Without it, we would face crippling medical bills that would most surely impact our ability to keep our child healthy and safe.

Pierce is on the Model Waiver funded by Maryland Medicaid.  Without Medicaid, one of us (Pierce’s parents) would have had to quit our jobs because Pierce’s tracheostomy requires 24 hour awake and alert caregiving.  Because no person can maintain awake and alert caregiving 24 hours per day, we would have lived in fear of catastrophe if one of us fell asleep while caring for Pierce.  Because of Medicaid, both of us have been able to keep our jobs and we know Pierce is safe because we have nursing care to monitor Pierce when we are sleeping and at work.

Cuts to Medicaid would have a dramatic impact on our family.  We have home nursing care for Pierce to cover only those hours that we are working and sleeping.  If Medicaid no longer covers those hours, one of us may need to quit our job and we will live in fear that our child will die if we fall asleep while watching him overnight.  Pierce’s medical bills crested $1 million during the first few months of his life; his medical care continues in the millions.  Lifetime caps on medical insurance coverage would financially destroy our family.  If the proposed healthcare bill handicaps individuals with pre-existing conditions, our son would face even more challenges and a loss of independence as an adult.

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.

Submitted by Pierce’s mother

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Timmy

Age 6, Maryland

Meet Timmy. Timmy is a newly minted kindergarten graduate who loves robots and pirates, plays on a local soccer team, and dreams of growing up to become a police officer, firefighter, “ambulance man,” garbage collector, or robot repairman. He is exuberant, hilarious, creative, and one of the most resilient children you will ever meet.

Timmy has Opitz G/BBB syndrome, a genetic syndrome that is associated with airway abnormalities and several other medical conditions.

Timmy breathes through a trach and has a feeding tube. He relies on several pieces of specialized medical equipment, including a ventilator (at night), a pulse oximeter, a nebulizer, a machine that provides intrapulmonary percussive ventilation, and an oxygen concentrator (when he’s sick). 

We have excellent employer-sponsored health insurance that allows Timmy to thrive at home. That insurance keeps him healthy and provides for the medical supplies and equipment that he relies on; it also allows us to access out-of-state specialists, which is necessary because Timmy’s condition is rather rare. Quality healthcare and excellent insurance means that Timmy lives a fairly normal kindergartener life; it also drastically reduces the cost of his medical care because we are able to avoid lengthy in-patient hospital stays.

Timmy spent his first six months in the hospital. He was born just six days after the initial provisions of the Affordable Care Act kicked in. Among those was a ban on lifetime maximums. Our insurance policy at the time included a lifetime limit of $1,000,000, which Timmy would have reached by the time he was three months old. Because of the ACA, we didn’t lose our insurance. Timmy was born in Ohio and was approved for the Medicaid waiver when we finally brought him home; however soon thereafter we moved to Maryland and have been on the Medicaid waiver waiting list for nearly six years. We are managing because my employer-sponsored insurance is very good. However, because our insurance does not cover daytime nursing (kids usually access this service through Medicaid), we cannot both work outside the home. If Medicaid cannot even manage current needs, what will happen to children like ours when the proposed drastic cuts are implemented?

Timmy is thriving primarily because we have great insurance. Even with the ACA, our employment options are extremely limited because of Timmy’s insurance needs. Under the proposed healthcare bill, a loss of employment, a change in jobs, or even a decision on the part of our insurance company to reduce covered benefits would be devastating, both for Timmy’s health and for our family’s finances. Essential health benefits are just that–essential. What would we do with an insurance plan that didn’t cover hospitalizations, durable medical equipment, or outpatient care?

Submitted by Mark and Michelle, Timmy's parents

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Charlie

Age 5, Virginia

Meet Charlie. She is five years old and loves playing outdoors, live music, things with numbers, and anything with animals.

Charlie was born more than three months early and, as a result, is developmentally delayed.

Currently, Charlie requires physical therapy (PT), occupational therapy (OT), and speech therapy. She has a g-tube (feeding tube) and wears orthotics.

What does access to affordable, quality healthcare mean to you? Affordable care is the difference between independence as an adult or permanent disability.

How has the ACA and/or Medicaid helped you? Due to a three month NICU stay, Charlie would have exceeded her lifetime cap before she ever came home for the first time. Then, she would have been uninsurable due to her birth being a preexisting condition. Also, Institutional Medicaid paid for a large portion of her NICU stay. Upon discharge, a Medicaid waiver helps with out of pocket costs and provides services that insurance doesn’t cover. She would not be where she is without any of these things.

The changes in the proposed healthcare bill would cause Charlie to drastically lose access to these services. Receiving healthcare services is her chance to leave a life-limiting disability behind.

Submitted by Charlie's mom, Rebecca

(For more on Charlie’s story, see this CNN story that featured Charlie and Rebecca.)

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Aadi

Age 4, North Carolina

Meet Aadi. Aadi was born 2 months premature with cerebral palsy. He had a life and death situation during birth. It started with hypoglycemia and pneumothorax then respiratory failure from weak lungs. He needed a chest tube and was on a ventilator right after his birth. He then “coded” multiple times from cardiac tamponade and needed emergency drainage of the fluid from around his heart. The medical team was able to keep him alive. He developed hypoxic brain injury from all the events and developed severe cerebral palsy, periventricular leukomalacia, seizure disorder, legal blindness, and severe global developmental delay.

Aadi needs total care and full assistance with feeding, sitting, standing, and personal hygiene. He suffers from seizures once in a while, and receives follow-up care from a neurologist. He also gets frequent ear and respiratory infections.

Aadi recently got accepted into North Carolina’s CAP/C waiver program and with this waiver he was also able to get Medicaid. We are really grateful to be living in North Carolina as Aadi will now have access to a nurse aide and various other quality services under this CAP/C waiver program, which is basically covered by Medicaid. Just having employer sponsored private health insurance is not enough to cover the medical bills incurred during care of a medically fragile child.

Budgetary cuts in Medicaid mean Aadi will be denied of all the healthcare access through CAP/C, and could even mean CAP/C waiver program going away. I can’t even imagine the horrible situation that Aadi and many other medically fragile kids will have to face with the proposed changes. For the parents it will be a huge financial and economic constraint. Bottom line is that we will go broke and we will not be able to contribute to the economy as we will have to continue taking care of our child. So it’s a lose-lose situation for everybody!!!!!

Submitted by Dipendra, Aadi’s father

Xiomara

Age 4, Maryland

Meet Xiomara. After spending the first five months of her life in the hospital, Xiomara is eager to explore the outside world. She loves going to the playground, library, school, and grocery store. She enjoys meeting new people and visiting new places. Most of all, she loves watching Sesame Street and playing with her big brother.

Xiomara has Tracheobronchomalacia, Chronic Lung Disease, Pulmonary Hypertension, Pulmonary Vein Stenosis, Chronic Kidney Disease,  and Global Development Delays. She has a tracheostomy and is ventilator and oxygen dependent. She also has a feeding tube for all her nutrition needs.

Despite a healthy pregnancy and uncomplicated birth, Xiomara was born with multiple significant health issues. Access to quality healthcare covered by our health insurance means Xiomara received the care she needed during an extended NICU hospitalization, and she can now live at home with her family and be monitored by specialists in regular outpatient appointments.

Medicaid has helped Xiomara receive the habilitative therapies she needs to catch up on her developmental milestones, including physical therapy, occupational therapy, feeding therapy, and speech therapy.

If lifetime caps or preexisting conditions are reinstated, she would be uninsurable and our family could be bankrupted...and she still wouldn’t get the medical care she needed thus severely impacting her quality of life.

Submitted by Elena Hung, Xiomara’s mother

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Simon

Age 11, Maryland

Meet Simon. He loves music, Disney movies, and playing Mario Kart with his big sister.

Simon has Cerebral Palsy, Hydrocephalus, a rare form of Epilepsy, and a unique genetic disease. Simon's medical needs include: Medications (including infusions), regular testing both inpatient and outpatient (bloodwork, EEGs, and MRIs are a regular thing), Medical equipment (a pulse oximeter, AFO braces for both legs, a walker, and a wheelchair), frequent doctor appointments with a wide range of specialists (both local and out of state), surgeries and emergency care, maintenance of his VP shunt, therapy multiple times per week, specialized education, neuropsychological appointments, and other evaluations.

The protections in the ACA prevent us from losing healthcare/going bankrupt despite Simon's multiple pre-existing conditions and the high cost of his care. Though he's  currently on a waiting list for Medicaid, his school is still able to provide vital therapies to all students through its funding. In the future, Medicaid will be the only option for Simon to get the medical care he needs after he ages out of our insurance.

Medicaid and the protections mandated by the Americans with Disabilities Act also provide support for the vital programs and accessibility accommodations that will allow Simon to stay home with his family and in his community, with as much independence and quality of life possible, preventing him from becoming institutionalized. 

Submitted by Laura Hatcher, Simon’s mother

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Jack

Age 6, Virginia

Meet Jack. He loves all things science related, especially weather and storms. He does experiments of his own making regularly. He also loves to swim in the ocean and play with other children.

Jack has Cystic Fibrosis, Allergic Broncho Pulmonary Aspergillosis, and Distal Intestinal Obstructive Syndrome.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  Everything, it is the difference between life and death for my baby and thousands of other children like him.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  Eliminating pre-existing conditions, my son has been a pre-existing condition since 4 weeks of age. He already cannot get life insurance; prior to the elimination of pre-existing conditions our options and his for healthcare were so much more limited. Should we have a lapse in coverage at any time, it was feasible that he could go without care for a minimum of 12 months while we wait out the clause...that would be fatal for him. We cannot afford his care on our own, just one of his 14 medications is $58k per month, another is $6k per month. He needs them to perform the basic function of breathing.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT JACK?  The return of pre-existing conditions is the most terrifying aspect for me. Why should an insurer be allowed to tell a child who was born with a condition that they are too much of a risk to insure? Neither I nor my son chose this for him; my government should be doing everything in its power to help me save him and children like him. They are important, their lives matter. They need to be given every opportunity to thrive and participate in every moment of their life just as healthy people do.

Submitted by Tasha, Jack’s mother

Victor

Victor

Age 12, Texas

Meet Victor. He loves going to school with his friends and playing Miracle League Baseball on the weekends. He's a big fan of all types of music and especially likes when others dance with him. He laughs a lot when his younger brother gets into trouble and he loves to swing and attend social events whenever possible. When the weather is good, he loves to be outside taking in a stroll around the neighborhood or even using his special tricycle.

VICTOR’S DIAGNOSES: He has no known syndrome. In fact, at birth he was deemed "typical". However, seizures developed rapidly at the age of 10 days and a full Epilepsy diagnoses was given at 12 weeks of age when he had a long lasting convulsive status seizure. Following this, he was diagnosed with Infantile Spasms-- the worse seizure diagnosis for an infant, whereby he had upwards of 50 seizures per day. Cerebral palsy, cortical vision impairment, scoliosis, reflux, restrictive lung disease, spastic quadriplegia, non-verbal, and cognitive delay are also among his many diagnoses.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  Affordable quality healthcare to me, is the difference between life or death and owning our home or going bankrupt! Healthcare is a human right and a moral obligation to support LIFE and cherish every second of it while it exists.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  Prior to the ACA, when Victor was an infant, we spent many hours and sleepless nights in the hospital. With all of the heartache we went through, I still paid the bills and read every Insurance EOB. Our lifetime limit was $2millon. At the age of 2, Victor's tab showed he had reached over $600k. I worried constantly about how we'd survive this. I also saw things coming in mentioning pre-existing condition. I used to wonder, "does that mean before he was born?" we had no idea about his medical concerns during pregnancy.

Then came the ACA and my worries went away! He remained on a waitlist for 8 years before obtaining a Medicaid waiver. We were very lucky to have an amazing policy through my husband's employer all those years, so we made due. Then, Victor's name finally came up and Medicaid was granted. It was a Godsend! At that time, I had my 2nd child and was no longer working so knowing that we also had Medicaid alleviated much of the financial burden.

Shortly after receiving that Medicaid waiver, we relocated out of State. We had to reapply all over again and not every State is the same. Thankfully, Victor was accepted into the Medicaid waiver program and at a time when we needed it because my husband's job situation changed. With the worry of caring for our boys while both unemployed, we were grateful that Victor had Medicaid--his health concerns became greater and even endured a spinal fusion surgery. There is no doubt that Medicaid has helped us offset his high medical costs but it has helped tax-payers for years as we've cared for our son, in our home and not run up larger bills if he were otherwise forced in an institution.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT VICTOR?  I dread the thought of this! If the current proposed bill moves ahead with drastic cuts or even elimination to Medicaid, we would go bankrupt and while we don't ever plan to place our beautiful boy anywhere else but our home, this bill could literally force a choice upon us that no parent wants to make!

Victor's 2016 medical expenses alone cost over $600K! A little more than half of that was paid through our private insurance and Medicaid picked up the bulk of the remaining portion. Without Medicaid we would have had to pay over $300k! Who can cover costs like this annually? ---NOT the average hardworking American!

As a 1st time mother and especially of a medically fragile child, I struggled with so many things in those early days--all of the doctor visits, missed milestones, inability to socialize the way we would have normally, going to the store without stares to my baby boy, giving him emergency rectal seizure medication nearly on a daily basis--it was all so horrible. I refer to those days as our “Dark Days”.

I didn't want to share everything about my son back then. I was jealous of other families with typical babies and sad for my boy, myself and my husband. Then, one day I somehow got stronger. I accepted every bit of it and when people asked me the most personal questions that I couldn't freely answer during the Dark Days, I began to answer most of them and then began to share our story.

I discovered as the Little Lobbyists have, that sharing my story adds value to our communities because we can learn by our experiences and that of others. Sharing our stories is what helps create CHANGE and we must continue to strive for everything better. I will never stop fighting for my son and others like him!

Submitted by Laura, Victor’s mother

Jack

Jack

Age 10, Illinois

Meet Jack. He loves Mickey Mouse, watching bubbles, and being read books.

Jack has cerebral palsy and a seizure disorder. He is developmentally delayed and requires a trach to breathe.

CURRENT MEDICAL NEEDS:  Jack has many medical needs. He has currently been in the hospital since January 11, 2017, waiting for enough home nursing so that he can be discharged home. He was admitted for gastrointestinal surgery. Due to complications from surgery, he now has a trach.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  It means that we can receive the necessary and complicated medical care that our child needs without financially devastating our family.  I had to quit my job to care for him.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  It has helped him to receive the extensive medical care he requires to remain as healthy as he can and have a good quality of life even with his severe disabilities.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT JACK?   It could affect his medical care, his quality of life, and financially ruin our family.

Submitted by Lynn, Jack's mother

Claire

Claire

Age 9, Alaska

Meet Claire. She loves her dogs and meeting people.  A social butterfly with no fear. Lots of hugging for everyone.  Most well-known child advocate in the state.  Loves music and dancing.

Claire is a trauma survivor - completely blind, seizure disorder, severe developmental delays and mental health complications due to child abuse and attack at 3 months of age.

CURRENT MEDICAL NEEDS:  Speech therapy, OT, PT, psychiatrist, medication, neurological care for seizures, compromised immune system, behavior management, aides for blindness

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  Funding for the services necessary for Claire to receive and still live at home.  She is a child who would require nursing home level of care without these services.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  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).

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT CLAIRE?   Funding cuts would reduce services and states would be forced to cap the amount of money allocated per recipient; prescription coverage is considered optional!  Her meds are $7K per months; without them her seizures would require her to be hospitalized at last daily - seen through the ER.

Claire is an amazing child who inspires others daily by overcoming her challenges, and helps her grandmother advocate for all disabled children in Alaska.  She is at protests, rallies, political functions and regularly appears before the State Legislature.

Video about Claire: //vimeo.com/234104193

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Submitted by Shelly, Claire's grandmother

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Myka

Age 7, California

Meet Myka. She loves the Girl Scouts, ice skating, playing with her friends.

CURRENT MEDICAL NEEDS:  Myka has a congenital heart defect. She's already had two open heart surgeries and will need a third in future.

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  No lifetime caps (she hit $500k before first birthday) and no discrimination for preexisting condition.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  We have a private, unsubsidized healthcare plan due to my husband opening his own business. He was able to do so b/c the ACA protected Myka.

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT CLAIRE?   She could lose her healthcare due to her serious preexisting condition.

Submitted by Angela, Myka's mother

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Ethan

Age 8, West Virginia

Meet Ethan. He loves piano, horseback riding, going to church, and spending time with his family and friends.

Current Medical Needs: He has Congenital Myasthenic Syndrome - Slow channel. G-tube, tracheostomy, night time mechanical ventilation, walker, stroller, pulse oximetry

What does access to affordable quality health care mean to you? Ethan will have treatment like OT and PT and maintain access to the CDCSP Waiver which serves as gap coverage with his private insurance. 

How has the ACA and/or Medicaid helped you? Ethan received Medicaid as a result of a waiver program which covers his home nursing, enabling him to attend public school. He also receives therapies which have improved his quality of life by increasing accessibility. As a child with a genetic condition he will never be denied lifesaving medical coverage.

According to Ethan's mom, Christy, "As he grows, we are teaching Ethan how to be a responsible citizen who gives back to his community, and Medicaid has given him to tools to do so. He attends school with the support of a licensed nurse, and his stroller and wheelchair allow him to explore our neighborhood. If you ask him what he wants to be when he grows up, Ethan will confidently respond: 'a substitute assistant principal, children’s doctor and barber.'"

Ethan is a sweet and smart little boy. With the current programs in place he has the ability to grow into a fully functioning member of his community. College and the workforce are in his future. If he loses access to public school due to the loss of a nurse his potential would be limited. 

Read more about Ethan in this Op-Ed written by his mom, "My son's life depends on Medicaid. When will lawmakers stop sabotaging his care for political gain?"

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Emma

Age 4, North Carolina

Meet Emma. Emma enjoys playing with balls, blocks and exploring outside in the grass.

Current Medical Needs: Emma doesn’t have an overarching diagnosis, but she is a twin born at 28 weeks with bilateral vocal cord paralysis (BVCP), neurological deficiencies, global developmental delay, severe Reflux/GERD, nonverbal with tracheostomy and gastrostomy, and pulmonary disease. Emma needs 24h "eyes on" care. She requires frequent suctioning to clear secretions from her trach, multiple nebulizer medications, 100% gtube feeds (16hrs/day), incontinence support along with 100% support needed for self-care.

What does access to affordable quality health care mean to you? Not drowning in debt to provide basic, life-sustaining care for my child.

How has the ACA and/or Medicaid helped you? Our private insurance will not cover Emma's in home nursing, a majority of her general and respiratory supplies and the frequent therapies she needs to make progress. Medicaid is covering that different that would be financially insurmountable if she were to lose it.

Read more about Emma in this Op-Ed written by her mom, "Hold Your Breath."

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Caroline

Age 8, Virginia

Meet Caroline. 

"She [Caroline] is very observant and engaged, and she understands everything we say to her. She uses her eyes and makes sounds to communicate, and she is also learning to tell us what she wants with a computer that tracks her eye movements. Caroline is not defined by her missed milestones, but by her strength and sweet spirit. She loves spending time with her family and friends. She is daddy’s little girl. She loves books about dinosaurs, and her favorite movies are Tangled and Beauty and the Beast. In a lot of ways, she’s just like any other girl her age.

But unlike typical girls, Caroline’s medical needs continue to worsen and grow more complex with time. Even with four medications to control her seizures, they keep coming. Caroline had 85 seizures last year alone. She also needs medication to keep her from vomiting and medication to let her know when it’s time to sleep. Caroline’s muscles and tendons are often very tight so she has to take yet another medication and wear braces on her ankles and hands to keep contractures from developing. Caroline’s condition also makes her susceptible to pneumonia and respiratory failure."

Read more about Caroline in this article written by her mom, Marta Connor - "Medicaid Fulfills Crucial Role for Children with Special Health Care Needs Like My Daughter."

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Abigail

Age 8, Pennsylvania

Meet Abigail. She loves music and dancing. She loves to move with the trees when the wind makes the leaves dance. She loves all things Disney likes to cuddle her Mickey Mouse dolls. She loves her big sister and her big brother. She is the most authentic person you will ever meet, never afraid to just be herself.

Abby has a rare genetic syndrome called Primrose Syndrome. She has epilepsy and mitochondrial dysfunction which impacts many of her organs. Medicaid helps her family significantly. Even though her family has private employer-based insurance, it wouldn't be possible to afford Abby's extensive medical bills without Medicaid. It has been essential in allowing Abby to access the care she needs to grow, live, and participate in her community.

Abby is Deaf-blind and attends third grade at a local school for Deaf children. Even though she can't speak or sign, she understands what people are saying and she cherishes her friendships. At school, Abby receives multiple therapies and specialized education. Medicaid assists the school district in funding these therapies as well as the 1-1 aide that Abby needs.

Abby uses a wheelchair when she is out in public, which means she needs accessible rams in stores and restaurants as well as accessible public transportation. Additionally, as a Deaf child, Abby needs an American Sign Language interpreter in order to understand what is being said. The ADA allows Abby to access her community, just like every other kid.

Submitted by Erin Gabriel, Abby’s mother

 

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Louie

Age 4 Louisiana

Meet Louie. Louie is a bright, funny, sweet kid who's always quick with a hug. He loves reading and numbers, painting, Thomas the Tank Engine and playing in water, sand and dirt. 

Louie has autism spectrum disorder and global developmental delay. He uses a communication device to speak and he receives more than 30 hours of therapy a week, including speech, occupational, physical and ABA. 

Louie's family has health care coverage through the ACA exchanges. The increasing cost of health care is a burden for Louie's family, and his mom says they have to sacrifice a lot to afford his care. But that isn't what has been keeping her up at night:

"What I lose sleep over isn’t the thought of paying for the insurance; it’s the fear that my child could lose access to these protections altogether. He would never have been insurable before the ACA. I have spoken to families who were bankrupted trying to keep up with therapy bills. What I want is for my child to have the best possible shot at living a healthy and happy life. But he needs this care for that to happen."

Submitted by Kathleen Ide, Louie’s mother

 

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Penny

Age 7, New York

Meet Penny. She is six years old and loves being around her friends and loved ones, especially when she can spend it outside.  She’s a true nature girl and can gaze at the trees, flowers, and the vibrant colors of her surroundings all day.  Take her to her favorite koi pond and she’s at bliss.

Penny has Aicardi Syndrome, a congenital neurological disorder that severely impacted her physical and cognitive abilities.  She needs a wheelchair to get around and a G-tube to eat, and often gets respiratory illnesses including pneumonia which require her to use oxygen.  Penny also has seizures, which need to be monitored constantly.

The ACA and Medicaid helps Penny get the therapies and equipment that not only help her live, but make her comfortable, keep her out of pain, and give her the quality of life every child deserves.

Penny's dad, Josh, says this about her current care: "Three years ago, we had a series of conversations among ourselves and with Penny’s doctors and decided that considering how traumatic, painful, and precarious Penny’s life had become at home, it would be the best choice for us and her if she moved into an excellent children’s facility nearby.  I can’t imagine I’ll ever do anything harder in my life.  But it turned out to be a Godsend.  We see our Penny all the time, and she is so well taken care of.  She has nursing care 24 hours, as well as a staff of technicians and nursing assistants who care for all of her activities of daily life, from dressing her in the morning to bathing her and putting her to bed at night.  The place is beautiful, with recreational areas, kids wearing their actual clothes instead of gowns, toys, decorations, a wonderful playground.  She’s so happy there and as healthy as can be possible.  Maybe .0000001% of people could actually afford this facility on their own.  Penny is on institutional Medicaid, as most of the children there are.  That means everything is paid for, and her facility is given enough money from Medicaid to make the facility one that medically fragile children need and deserve. "

Penny's dad also says this about the way being a special needs father can bring out the best in some dads: "I have come to know some of the most spectacular special needs dads that I could ever meet. I’ve known dads to build entire rooms to accommodate their kids, convert a van themselves, carry a 60-pound daughter miles through the hilly woods because she loves it, change jobs and move the family cross country for better services for their children, and create enough adaptable devices (and Halloween costumes!) to earn an engineering degree."  

Read more about Josh's reflections on being a special needs father in his Little Lobbyist blog post  and listen to his interview on the podcast for and by caregivers "Who Lives Like This?" 

Submitted by Josh Fyman, Penny’s dad

 

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Louisa

Age 3 Michigan

Meet Louisa. 

She loves playing on the swingset and going for wagon rides with her brother, reading stories, playing games, listening to music, and everything other kids her age like to do!

Louisa has Hypoplastic Left Heart Syndrome (missing 2 chambers of heart), tracheomalsia, and gaestroparesis. She is awaiting a 3rd stage heart surgery, had a tracheotomy, and is fully tube fed. She uses a pediatric medical walker to help her get around.

Before Louisa was born, her parents knew she would need open heart surgery at just days old, and that if she survived she'd need another surgery at 4-6 months, and yet another at 2-3 years old. They didn't know she'd need a trach and be ventilator dependent for the first 2.5 years of her life.

Louisa's mom says that someday, Louisa will likely need a heart transplant.

"ALL of these conditions and the necessary medications and medical supplies are beyond what both my husband and I can ever earn and save. It is our fear that an insurance company could tell us she is not insurable, or has met a maximum.

If pre-existing conditions weren’t covered, our children would die. If you allow insurers to have a limit for lifetime, our babies would have hit it at 6 months old.”

Read more about Louisa and her family's journey here.

Submitted by Andrea Pietrowsky, Louisa’s mother

 

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Owen

Age 15, New York

Meet Owen. Despite his many physical challenges, Owen is a really smart kid who loves science, books, mystery shows on TV, trips to New York City's great museums and especially strolls through the Brooklyn Botanic Garden. He has an indomitable spirit and is incredibly brave and funny and filled with curiosity about the world. He loves his younger brothers very much, but like all teenagers, sometimes they get on his nerves

Owen was born with a genetic disorder known as Spinal Muscular Atrophy Type I, which means he lacks the protein that supports motor neuron activity. Owen is completely paralyzed and uses a wheelchair for mobility, depends on a ventilator to breathe at all times and tubes for feeding. He requires nursing care at all times and assistance with all aspects of daily living.

Losing Owen's Medicaid waiver would be an absolute disaster for our family. Medicaid pays for those things that our private insurance will not cover, most importantly the home nursing care that allows me to work outside the home. My job  provides our income and private health insurance coverage, and losing our nursing would jeopardize everything that holds our family together. Medicaid also pays for really important things like ambulance transport to see his doctors and non-durable supplies, without which we could not care for Owen safely.

Owen loves trips to New York City's great museums and especially strolls through the Brooklyn Botanic Garden. Unfortunately, the subway is largely inaccessible, which is a huge problem! (read more about the difficulty presented by New York City's inaccessibly subway here) That said, New York is a pedestrian city, and curb cuts at every intersection make the difference between being able to have Owen out and about safely and streets being just totally impassable.  

 

Submitted by Ellen Goldstein, Owen's mother

 

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Esther

Age 16, Arkansas

Meet Esther.  Estie was born with a unknown muscle disease. When she was 3 months old, she was adopted by her forever family, and at only 6 months her lungs collapsed. Estie has a tracheostomy and uses a ventilator to breathe, but this does not stop her!

Estie is entering the 11th grade, she sings in the choir, is in the chess club, and is a straight A student. Thanks to the Individuals with Disabilities Education Act (IDEA), Estie qualifies for an Individualized Education Plan (IEP) that provides things like school nursing and transportation which helps her to participate in school activities and has contributed to her success as an honor society student.

Medicaid cuts are Estie's family's greatest fear. They rely totally on medicaid for all her equipment, school nursing, and doctor appointments and procedures. Without Medicaid, they would not have the financial ability to provide for her. 

Estie's medical conditions and disabilities do not stop her, but losing access to medical care and nursing assistance could. When she graduates from high school she will no longer have day time care. She would like to go to college, but would have to have someone with her at all times, which isn't currently an option covered in their state.  

Estie speaks to others about what it’s like living with her disability and hopes to be a motivational speaker some day. In fact she's already gotten started. On June 26, 2018 Estie spoke at Little Lobbyist's first bicameral press conference.

You can watch it here:

   

Submitted by Lori Johnson, Estie's mother

 

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Liam

Age 10, California

Meet Liam. Liam loves to ride his bike and hang out with his mom and dad watching the San Francisco Giants play. Liam's smile touches the heart of everyone he meets.

Liam was born with a heart defect and has had multiple surgeries. After his 3rd surgery at 19 months, he had an hypoxic brain injury which left him quadriplegic, trach and JT dependent, with cortical visual impairment and daily seizures. 

Liam requires care 24/7 at home and at school. Liam loves school, and the therapy he receives there helps him maximize his abilities. Liam also loves to be out and about, though his mother says one of her dreams is for there to be at least one bathroom in every public building with an adult changing table. It's much more comfortable to explore the world when you're clean and dry!  

His mother also says that without the ACA and Liam's Medicaid waiver, their family would be lost. 

"Before the brain injury Medicaid covered anything connected to his heart surgeries. This would have been over $1.2 million. With lifetime caps, he would have lost coverage before he was 5.

After the brain injury, for 6 months we had an ACA policy. We’d been paying $1800 for COBRA that had run out. That expense got cut in half because of ACA.

Now I have insurance through work, but without the community based waiver, I wouldn't have a job. Liam requires care 24/7. Without the nursing provided through the waiver, not only would I not be able to work, I wouldn't be able to sleep. We wouldn't be able to get him to the doctor because we can't even drive with him alone.

Because of the waiver, I was able to finish nursing school and earn a MSN. I now work as a case manager at a FQHC clinic helping developmentally disabled adults get the care they deserve. Cuts to Medicaid will hurt them all. We need to be their voice."

   

Submitted by Patty Ryan, Liam's mom

 

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Aurora

Age 4, Minnesota

Meet Aurora. Aurora loves her siblings and she loves preschool. On her first day, she introduced herself as "Princess Aurora" and has been charming everyone ever since with her smarts, sass, and singing.

Aurora has intractable epilepsy. She needs 5 medicines each day to control her seizures, as well as 3 rescue medications. The cost of prescriptions has been crushing for her family. Her mom says: 

"Right now just one of my daughters medications is $3,000 per month. This past week she required an ambulance ride to Children’s Hospital which will come back over $5,000. Come December we will be taking a loan against our home in order to afford her medical costs in January as we have a $7,500 out of pocket maximum, and only 50% of that can be prescription costs. Our monthly premium is $1,000.

If the pre-existing condition clause was brought back or a lifetime maximum was allowed, my daughter would have no coverage. Our medical claims this year have totaled 2.6 million. This isn’t affordable. We shouldn’t have to take out a loan to keep her alive, but we will. "

   

Submitted by Lindsay, Aurora's mom

 

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Ethan

Age 4, New Jersey

Meet Ethan. Ethan loves his family, fireflies, and hiking through the woods to gather stick "bouquets" for his mom (because he likes sticks better than flowers).  

Ethan has heterotaxy syndrome, a rare condition causing internal organs to be malformed, misplaced, multiplied, or missing entirely. Ethan was born with 2 left lungs, 5 spleens, and  9 congenital heart defects. In his first four years of life, he's had four open heart surgeries.

In a series of tweets that went viral in June 2017, Ethan's mom Alison says:

"Without insurance we would owe $231,115 for 10 hours in the OR, 1 week in the CICU and 1 week on the cardiac floor. He's had four of these surgeries, some more involved than others. The one before this had him in the CICU for three weeks. We're hopeful that going forwards he'll need fewer and smaller surgeries, but this was not the last time they'll open his chest.

Nearly a quarter million dollars for one surgery. Reinstate lifetime caps and he's out. He blew past the million dollar mark long ago. As long as we have him with us (and I hope with everything in me that it's forever) we will need to pay for expensive medical care. A lifetime cap on benefits is the same as saying, 'Sorry, you're not worth keeping alive anymore. You're just too expensive.' Look my son in the eyes and tell him that he's fought so hard to be here but sorry, you're just not worth it anymore. I dare you."

Read more about Ethan and his mom Alison Chandra in their CNN interview here, and in the article Alison wrote for Vox about her experience going public (and viral) with Ethan's health care story. 

   

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Jillian

Age 5, Wisconsin

Meet Jillian. When she grows up she wants to be a doctor, nurse, astronaut, teacher, music therapist, and work at the Ronald McDonald House. Jillian sees her medical needs as her super powers.

Jillian has an undiagnosed medical condition. She needs supplemental oxygen to breathe, a g-tube for nutrition, and a wheelchair to get around (which she decorates to make more fashionable). She's able to explain scary medical stuff to her little sister (who shares her yet-undiagnosed condition) in a way that won't make her afraid. She's brave, empathetic, and always stands up for what's right.     

Jillian and her sister are covered under the "Katie Beckett Waiver" - a medical need (not income) based medicaid waiver established by Ronald Reagan in 1981 after he was moved by the story of a child named Katie Beckett, who spent most of her early years in the hospital because she needed a ventilator to breathe and Medicaid would not cover treatment at home.  Since established, more than half a million children have been able to live at home, and not in the hospital, thanks to this program.

Cutting Medicaid, making it more difficult to obtain, or converting it into a block grant program literally puts the freedom of children like Jillian at risk. Learn about the potential consequences in Jillian's home state of Wisconsin here.

Jillian loves to be a part of her community, and accessibility is really important to her. Jillian's mom Amanda says:

"Jillian uses a wheelchair when in public to get around. She gets frustrated when places are not as accessible as needed and often advocates with places to make their buildings more accessible. She talks to people about why ramps are so important. Jillian is very thankful for ADA because it means that she is able to get into so many different places and play with her friends. She also is very thankful for accessible playgrounds so she can enjoy the community."

For more information on accessible playgrounds and how to find one, check out NPR's "Playgrounds for All Children: Here's How to Find One."