From the very start of her life, our daughter Sully faced obstacles that not every child has to endure. Sully has Down syndrome, had open-heart surgery at seven weeks and has a feeding tube surgically implanted in her stomach. She is beautiful, loving, courageous, strong and silly, but at 19 months, our child cannot crawl, walk, talk and most important, cannot drink liquids – things that most children can do at her age.

Our daughter needs intense developmental, occupational, physical and speech therapy on a weekly and sometimes twice-weekly basis to catch up and meet these milestones. Texas lawmakers are debating right now over whether they will restore funding to Texas’ Medicaid acute-care therapy and early childhood intervention programs.

In the last legislative session, lawmakers cut hundreds of millions from this therapy program and while Sully is still receiving care, other families in situations like ours have lost or are still waiting for care. This session, the Texas House budget partially restored funding and canceled changes in policies that further cut reimbursement to the therapists who treat Sully and kids like her.

We travelled to Austin in January to testify before the Senate Finance Committee about the need to restore funding to the therapy program. At that hearing, Sen. Jane Nelson, R-Flower Mound, the chair of the committee, told us: “I absolutely want to make sure that your daughter and all of these other children receive these services. It was never our intent to take away services.”

Despite Nelson’s promise to us and to dozens of other parents there that day, the Senate did not restore funding in its budget and left the harmful policies in place.

The therapy providers in our area made temporary adjustments after the cuts last session and continued providing services to Sully. More recently, we were advised by our therapist that if Medicaid cuts are not reinstated, they likely will not remain open because they serve only pediatric patients, many of whom receive Medicaid.

Sully cannot achieve and be successful in life without pediatric therapies. She needs the expertise and qualifications of each of her therapists to learn to do the most important things in life – crawling, walking, talking and drinking. Without the intense developmental therapies that Sully requires, she will not be able to grow into a successful and independent member of society, who will not have to depend on the government to be cared for as an adult.

Every day, Sully does something that she wouldn’t have done without the help of the consistent therapy she receives. The squealing and the whining Sully makes that causes people to turn around and smile at us, or others annoyed, is only possible because of her speech therapy. Without occupational therapy, she could not pull on our ears or hair, and without physical therapy she could not lift her head to smile at us. To achieve more milestones like these, Sully must have access to care, which will continue to be threatened if the funding is not restored in the state budget. Sully will not be able to receive occupational therapy where we live if the therapists in our area stop providing service. This will not only affect Sully, but also every other child who receives occupational therapy in the area. Our only option would be to drive over 70 miles one way three to four days a week for therapy appointments – over 420 miles a week – which the state considers appropriate access to care, but is impossible to do with both of us working. We will be left to choose between life-improving therapy for Sully or providing for our family.

We never imagined being in a position where we would have to depend on the government for our daughter to succeed in life. Our other children did not need the approval and funding to reach their basic milestones, but we cannot say the same for Sully. She needs the government’s approval and the Medicaid funding cuts to be restored for her to achieve her basic milestones.

The Texas Senate can now keep its promise to the thousands of families and Texas children receiving therapy care by restoring the funds they cut from the Medicaid budget so that Sully and thousands of other kids like her can receive the care they need to thrive and survive.

The Drakes live in Livingston.

Published by: Houston Chronicle

Author: Rachel Drake & Marty Drake

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