(Names changed for privacy)

Sarah Smith’s world changed when her son arrived. Her heart had never had love for a human like this one before, and she also could never have imagined all the ways she would be called on to care for this new human. Early in Sam Smith’s journey, he was diagnosed with Agenesis of the Corpus Callosum (ACC), a rare occurrence where the pathways between the left side and right side of the brain are not formed in pregnancy.

For Sam, this diagnosis meant that he struggled eating and swallowing as an infant. It also meant that for the rest of his life he would struggle with certain tasks that require integration between both sides of the brain. Walking, tying one’s shoes, going to the bathroom - these daily tasks could all potentially come with challenges because they require the integration of both the left and right side of the brain. 

As Sarah and her husband began to learn more about ACC, they also learned that early intervention programs like therapy could significantly improve abilities Sam might struggle with down the road of development. Because of the plasticity of the human brain, Sam would be able to build synaptic connections to generate pathways between the left side and right side of the brain.

But here’s where their story connects to conversations around education and parent choices. Similar to the public school system, the government provides resources to help with Sam’s development and growth as a disabled American. However, depending on the state that a family lives in, parents like Sam’s have more or less control over the “best” care for their child.

Right now, the Smith family is leaving the state of Tennessee, where Sam has received all his care, to follow a family career change. But for Sam, this change might mean significantly lower quality support, especially in the pandemic era where some states only offer virtual therapy.

In Tennessee, the state gives families funds for therapy and special needs based on their diagnosis. Parents can choose the therapy that best meets their child's needs. For some families, state therapy programs are an excellent answer. But for Sam, there have been many benefits to attending private therapy programs. 

Now, to continue similar therapies with Sam in their new state, the Smith family will have to pay out of pocket if they want to receive the same level of care because their only state funded option is in state-operated therapy programs. In fact, the Smith family strongly considered not taking the career opportunity in their new state because they knew they would lose access to such high-quality care options for Sam.

Looking at Sam, it is easy to see that his therapy significantly affects both his and his parents quality of life. But if Sam had been in a different state this year, he may have received some virtual therapy in state-run programs, or he may have received no therapy at all. It could have meant the difference between learning to walk or not walk for Sam. 

In the same ways that parents should be able to receive a professional diagnosis and then choose the appropriate therapy for their children, all families should be able to make the same choices for their children’s growth and development in schools. In many states, having a child with special needs can bankrupt a family. When families know their children need more than the services a state-operated program can give, they will sacrifice nearly anything to help their children succeed.

What about the children in your state? Are their educational and developmental needs being met? Consider some of these recent educational opportunities available in other states and ask yourself, “Should I be advocating for this where I am?” For families wanting assistance advocating for special needs programs in their area, EdChoice has a staff member dedicated to this work. Contact Keri Hunter at EdChoice, and don’t miss their state by state resources. Finding support can feel overwhelming, but families of children with special needs should know they are not alone.