Save Critical Therapies for at Risk Children in Northeast Texas!
This petition had 2,753 supporters
To Gov. Greg Abbott, the Honorable Louie Gohmert, and other Texas Policy Makers:
I am writing to you as the mother of a nineteen-month-old baby girl with a disability. Her name is Collins.
My purpose is twofold. The first is alert you that Early Childhood Intervention services for Smith, Wood, Henderson, Anderson, Van Zandt, Cherokee, and Rains county will be closing on Sept 30, 2016. This is an absolute infringement of our children’s right to education in accordance with the Free and Appropriate Public Education Act (FAPE) and the Individuals with Disabilities Act – Part C. My second is that the drastic cuts for pediatric therapy providers appear to be so severe, that even the government cannot sustain their own federally funded and mandated program. ECI provides case management, speech, occupational, physical, nutritional, vision, and auditory therapies for children ages 0-3 years. Services are provided in the home because the primary goal of ECI is to educate children and families in their natural environment, creating a nurturing, educational, healthy home for children with disabilities regardless of race, religion, or socioeconomic status. They have helped us prepare for entry into the school system and explore ways to care for Collins both now and in the future. I have also been made aware that counties in the Wichita Falls area are also undergoing a difficult transition due to being underfunded and neglected.
I have been a pediatric speech therapist in Texas for the last eight years. Being a therapist requires working closely with children and their families for the best possible outcomes. At times, it also means helping them find their voice in a chaotic system so that their child can receive the help they need to thrive. Upon hearing of ECI’s closing in East Texas, it is time for me to find my voice as well.
On August 27, 2015, at only 6 months old, my Collins was diagnosed with a regressive seizure disorder caused by a rare genetic mutation. Her seizures, called Infantile Spasms, are catastrophic to brain development. Collins would have approximately 70-100 seizures upon waking and going to sleep. We approximate that Collins had more than ten thousand seizures within two weeks before they responded to medication. When we left the neurologists office, he explained that early intervention therapy would be critical for her development of functional skills. Skills necessary for preschool, friends, play dates, college, jobs, weddings. From birth until the age of 5 will be the most critical and telling years for her overall outcome. After all, 90% of the brain is developed by age 5, and neurological synapses are more than doubled during the first three years of life. What that means in simple terms is this: the brain is drastically expanding and developing during the first years of life. Motor pathways are routing, rejuvenating, and rapidly developing. How else can a neurotypical newborn transition from her only skills being primitive reflexes, sleeping and crying to an infant who can sit, crawl, stand, walk, and talk all within 12 months or less?! The first years lay our children’s foundation for how they will move, interact, socialize, and learn. For Collins, and many children like her, none of these things can happen without extra help from multiple therapeutic disciplines, which is why I had to find ECI services for her immediately. The professionals with ECI were comforting and compassionate. They gave me steps to take to help us get things organized with Collins until they could see her for an evaluation.
Because of the extensive need for ECI in the East Texas area, we waited two months before getting an evaluation. As I previously explained, two months for a baby is a lifetime. Therefore, we pursued private therapy for her OT and PT needs. This is a luxury many families do not have as there is no road map (outside of ECI) to tell families how to obtain skilled services for their child. Empowering and educating parents in how to teach their children is one of the highest values ECI offers to our nation.
When ECI did evaluate Collins, they told us she qualified for all services: PT, OT, ST, and Vision. However, since ECI for our county is already spread so thin they would only be able to see her at a frequency of once or twice per month, and it would cost us approximately $140 per month. As a team, we created her Individualized Family Service Plan (IFSP) recommending ongoing Case Management, Vision Intervention, and Orientation and Mobility Services. Collins has greatly benefited from these services!
Approximately 3 months ago, we were informed that the Andrews Center was terminating their contract with the state, and they would no longer be the provider. We were assured that the transition would be smooth as the State attempted to find a new provider for the federally mandated program. However, on Tuesday I was informed this would not be the case.
On September 30, 2016, ECI will have no provider, leaving many East Texas professionals without jobs, and 7 counties without mandated ECI Services. Over 300 families will be affected. As it stands today, all therapies and case management will stop until another provider is found. This is time lost for our children that we cannot get back. They will be casualties of transition, which is simply unacceptable. Over 100 children are on the referral list to get into the ECI program, with new referrals coming in daily. Children are still being placed on a waiting list when referred to ECI, even though the state knows there is no contracted provider to meet their needs.
Due to recent and drastic cuts to Medicaid for Texas therapy providers, the Andrews Center reportedly lost over $300,000 for housing ECI last year. ECI cannot find a non-profit provider who will agree to a contract with the State of Texas. Other reports say that a provider in Longview was in negotiations with the State; however, the State refused to cover the cost of start up to a new location, and the negotiations were stopped.
It is my understanding that under the Free and Appropriate Education Act and the Individuals with Disabilities Education Act part C, ECI services are a child's right. If the state of Texas does not urgently seek out a contract and provide adequate funds to cover the transition, they will be infringing on our children’s right to education. It is a breach of contract that each family has with the state of Texas as we all have an IFSP. A provision of IFSP (like IEPs in school) also states that if the state of Texas cannot provide a service recommended in the IFSP, then the state is responsible for paying for the child to receive those services privately.
I ask that you please bring this to the attention of Governor Abbott, Senator Eltife, Senator Cruz, and any other state representatives whose counties this may affect. I have alerted the media to this issue, and am finding ways to educate others in how to find their voice until this matter is resolved.
My new passion is that not only would the program be saved, but that it will be revived as a program that has enough funding to thrive in Texas. My hope is that it will be funded and staffed appropriately where children can receive the services they are entitled to at a more beneficial weekly frequency. This program was developed for a reason. For many families, it is their lifeline. It is our children’s chance to live normal, healthy and fulfilling lives.
Thank you for your time and consideration of this matter. I would love to meet with you soon to discuss this further.
Collins' Mom M.S., CCC/SLP
P.S. Because of her therapists and the family support our therapists have provided, I am thrilled to report that Collins is imitating sounds, belly laughing, crawling, and so very close to walking. She loves to be told she's pretty! Girls. She loves her therapists and lights up when they come to see her. She’s exploring, loves bath time, and plays peek a boo. ECI matters. Therapy matters. I look forward to sharing more with you soon.
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