Elliot

elliot_mslThis my 15 month old son, Elliot, who is sitting up and holding a ball…two things he would likely not be doing without the physical and occupational therapy he receives twice a week. He was born 3 months prematurely and suffered grade III and IV brain bleeds, damage associated with motor impairments and, very often, cerebral palsy. He also developed hydrocephalus from the bleeds, has a shunt, and with no cure, will always have a shunt. Elliot cannot sit like this long, but we are working on it with our wonderful therapists. Elliot cannot crawl, pull up, stand or walk yet (all typical for a one year old or younger) and with his brain damage, these are all things we were told he may never do. Early intervention has been key for Elliot’s progress and is having a huge impact on what he’ll be able to do in the future.

TEFRA is a wonderful program for so many reasons, but best of all, it isn’t a “hand out”; we pay premiums based on income. Without this coverage, our family would have been in medical bankruptcy before we were discharged from the NICU.

Harrison

harrison_msl

Today he talks (he goes to speech twice weekly; he actually qualifies for five hours a week). He laughs, he plays, and thanks to OT, he can dress himself and use the restroom. Because of Behavorial therapy he was able to potty train at nearly seven and learn to stop screaming violently every time we went to the grocery store. Today he is not the child he was last year, and tomorrow with therapy provided by Tefra he can be even more.

TEFRA is a wonderful program, and I gladly pay the premiums, along with carrying full medical insurance via my employer. Because TEFRA covers life altering therapies that my regular insurance does not.

Letters from Parents to Legislature concerning Therapy Cuts (Public Comments)

Do you wonder what you should or could say if you wrote a letter?
Here are a couple of examples that concerned parents have sent:


emmaDear Distinguished Representatives,

Please hear me when I say that we are truly thankful for the Medicaid system and Medicaid provided for those who need it. My daughter is one of those who has benefited from Medicaid more than I can express. She is 3 years old and was born with Down Syndrome which keeps us bouncing between as many as 10 specialty clinic doctors, ER’s, and therapists. She attends The Allen School in Little Rock where I’m also fortunate enough to work. We PAY for our Medicaid in the form of TEFRA. She receives the maximum 180 minutes a week from physical, occupational and speech therapies because she is more than a year behind in most everything.

See, our story is one where we have already experienced what these Medicaid cuts can do. Emma was born and lived the first 2 years of her life in Oklahoma City. The Medicaid system in Oklahoma is VERY different than here. For one, they don’t do physical therapy for ANY child under the age of 3. They explain their reasoning as Occupational Therapy and Physical Therapy is the same until age 3 because children don’t develop fine motor skills until then. However, what they don’t take into account is that Occupational Therapy also includes a sensory focus for children who are born with sensory needs. Emma had severe sensory needs and so her Occupational Therapy time was all used up by sensory development just to help her live without fear of everything around her. Therefore, when it came to things like rolling over, head control, or crawling, she had no more therapy time for that. Medicaid wouldn’t allow it. Although I stayed home with her and chose not to work to be able to provide better care for her, and even though we worked on physical movement and did her therapy “assignments” for 6-8 hours a day, she still was not even close to walking when we left Oklahoma July of 2015. She started physical therapy at 180 minutes/week in August of 2015 and by October of 2015, she was walking! She has made INCREDIBLE strides in all areas of development since we moved to Arkansas. Please do not let Arkansas cut services like in Oklahoma. Yes, a prior authorization could give her more needed hours. However, in Oklahoma, Medicaid takes 60-90 days to approve a prior auth.

The Medicaid services here in Arkansas are already so backed up it takes 3-6 months just to APPLY for Medicaid, much less change it. This is not a realistic cut and it will greatly impact disabled children who so desperately depend on these services.

I am pleading to you, as a mother, please don’t let this bill go through. Find a way to add accountability to the system without cutting services so drastically. There has to be a way to hold those who are abusing the system accountable without taking the services away from all children. I have confidence in you as our governing officials. Think outside the box. Create a solution. Brainstorm with those who are in the system for ways to navigate it more efficiently. Ask questions. Do the dirty work to fix this system for my child, for our children, for all the children in Arkansas. I know you probably got into government to help change the way things are done and to help people. This is your time. What you do with this decision will very likely shape the future of services in Arkansas. You can do this. Please, just try.



jackie-letter2 Hello, my name is Jackie Palmer and I am writing this so that my son Adam Devosha can have a voice on this issue. It is very dear and important to us. My son is 5 years old now with E.O.E and autism. This little boy has come such a long way and it’s all due to the therapy that he was able to receive through Medicaid. When Adam was a year and a half old, we had to teach him sign language in order to communicate with us because he couldn’t speak. He had so many issues from E.O.E where he needed eating therapy all the way to physical therapy and speech therapy because he couldn’t dress himself, hold a pencil, or talk. Thank goodness we were able to get all the therapies he needed not only in the Francis Allen school, but he was able to receive these therapies at home when he was very young. These therapies changed my son’s life in such an amazing way. He is now able to speak so well you can’t even tell that he needed the therapy, we also almost have him off his feeding tube now due to the eating therapy that he is still receiving. These therapies are getting my son to be able to bring him to the full and healthy potential that he needs to have a full, happy, and healthy life because without the therapies that he received there is no telling where my son would be today. We pray that in the future children like my son Adam will have the same opportunity in life to reach their full potential through these therapies, so please do not cut therapies for Medicaid it would truly cause damaging and irreversible effects to these children throughout their lives and we want the best for all children like my son Adam. Thank you and God bless.

Cash | Alma

cashHi! This is Cash. We live in Alma! He was given a postnatal diagnosis for Down syndrome where we also found out he has transient leukemia. Though he is overall very healthy and has not developed full blown leukemia, we do frequent testing with both oncology and hematology. He receives 90 mins/wk of PT, OT, and Speech. We would not be able afford these therapies without secondary coverage from TEFRA.

Wyatt

brewsterThis little guy gets 120mins/week each of PT, OT, and ST and 60min/week of Developmental Therapy. He’s had an adenoidectomy due to 80% blockage of his airways, a frenulotomy, PE tubes, glasses due to farsightedness and strabismus, he’s had an EEG which indicated a tendency for seizures, an MRI, and he takes medication for seizures. He also wears orthotics on his ankles. He is also in the process of diagnostic genetic testing. Absolutely none of that would be possible without Medicaid.

Ava

praterOur daughter was born at 37 1/2 weeks with the cord around her neck. She was diagnosed with Hypoxic Ischemic Encephalopathy which is lack of oxygen to the brain. Her MRI at 5 days old showed severe global brain damage. We were told she may never walk, talk or eat. Over the past 4 years she has also been diagnosed with Microcephaly (a babies head is significantly smaller due to abnormal brain development) Developmental Delays, Seizures, Dysphasia and Apraxia of Speech. We have primary insurance but she has TEFERA as her secondary as the primary doesn’t cover all her therapies. With the help of Medicaid Ava is walking, eating solid food and talking. Today she is Dysphasia free!! However, she does wear AfOs. She is still delayed and desperately needs Medicaid to help her develop. Currently she receives 180 mins of PT, 180 mins of ST and 90 mins of OT. Along with Developmental Therapy. Medicaid has helped Ava get to where she is today. I can’t fathom where she would be without the assistance of Medicaid.

Olive | Mt. Home

olive

Olive is 2.5 and has private health insurance and a few months ago was approved for TERFA Medicaid. 12 days after she was born we were flown down to ACH where we stayed for 21 days battling encephalitis. 3 days into our stay we received a phone call stating that Blue Cross Blue Shield only covers $5,000 of her $12,000 helicopter ride and how would we like to pay for that? We knew nothing about Medicaid. We were naive and assumed that since our child had insurance that would cover what our daughter needed after we met our deductible. Boy, were we wrong. Since then we’ve had another $12,000 helicopter ride! ACH helped us sign up for Medicaid and we were on AR Kids until we were accepted into TEFRA! Olive was eventually diagnosed with Dystonic Spastic Quadriplegia Cerebral Palsy. Since she was 6 months old she’s received 120 minutes of OT, 180 minutes of PT & 180 minutes of ST from a local CMHS facility per week. We maxed out what BCBS covered in February. On top of helicopter rides & therapy there is also equipment that Olive needs to help her progress. Some of which insurance flat out won’t cover, private or Medicaid. My husband and I have spent thousands of dollars out of our pockets on Olive’s care and we are happy we are able to do so as that’s our responsibility as her parents. But without Medicaid we would have been completely bankrupt after her first 8 months of life. In a perfect world insurance companies would cover what a child needs but that doesn’t happen and when your child has a disability such as Cerebral Palsy, Medicaid becomes a necessity.

Tank

tankOur son was born at 37 weeks with a postnatal diagnosis of Down Syndrome. By 4 months of age practitioners informed us that our son had Plagiocephaly, also known as flat head syndrome, which is a condition characterized by an asymmetrical distortion (flattening of one side) of the skull. They informed us that a cranial helmet would be potentially 99% effective in correcting the Plagiocephaly. Unfortunately, our primary insurance denied the request for treatment. Thankfully, we had TEFRA and without TEFRA we would not have been able to afford not only one, but two of these helmets. Today our son is 18 months and he is free of a helmet and plagiocephaly. We desperately need medicaid for instances such as this and for daily physical, occupational and speech therapy.

Kennadi, Griffin, & Macy | THE BATESVILLE DAILY GUARD

batesville-daily-guard2

Kennadi Pretty, Griffin Cossey and Macy Bryant are three Independence County children born with special needs whose families, without receiving Medicaid benefits, would not otherwise be able to afford treatments, therapies and other medical expenses for their children. They fear a cut in Medicaid funding will affect these families and many others — as well as a loss of jobs in this area (physicians’ offices, therapy clinics, developmental daycares, dental offices, Arkansas Children’s Hospital and other hospitals in the area).

Their story, “The real faces of Medicaid…” is in today’s Batesville Daily Guard.

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