When I first started working as a speech-language pathologist in 2010, I felt so lucky to have landed my dream job as a full-time clinician on a cleft palate team. My favorite part of cleft care was working with families as a member of their interdisciplinary team to help guide their child’s progress in communication skills. I saw kids grow from having severe cleft speech difficulty, where only their closest friends and family members could understand them, to having speech that sounded like everyone else. The amazing speech transformations that happen for kids with cleft are so exciting to be a part of! But, after a few years, I started to feel worried about some of the kids I was following. Not everyone was making expected progress. And the main reason why kids with cleft weren’t making progress with their speech therapy? Not enough access to speech therapy. And this was the same story when I later moved to another team in another state, and spoke with other cleft SLPs around the country.
I still vividly remember an experience I had about three years into my career as a cleft team SLP. I was meeting with a family new to our team. They had been struggling for YEARS to figure out why their child wasn’t making progress. That’s years of having been enrolled in speech therapy but not knowing why the needle wasn’t moving—they were getting more and more concerned because people couldn’t understand their child, who was getting older and older. And the therapy did not seem to be helping. This particular story made an impact on me early on in my career because I realized that there were kids out there in the world who were not getting the care they needed. And that those kids who weren’t getting care were people who were struggling to express themselves. And I wanted to figure out why they weren’t making progress and how we could help them.
School speech therapy caseloads are overloaded, making it hard for kids with cleft to access enough speech therapy
One reason why kids with cleft palate don’t get enough speech therapy is because schools are short staffed when it comes to their speech-language pathologists’ time compared to the kids’ needs. This creates challenges with getting enough face to face time with the school speech pathologist. Because speech and communication are so important for academic success, public schools are required to offer speech therapy services, and school based speech is most kids’ main source of therapy.
For many kids with cleft palate, a maximum frequency of speech therapy is needed. This means that kids might need at least 120 minutes of speech therapy a week, with home practice in between sessions. Sometimes, there just aren’t enough school hours in a week to fit in this many sessions. The school team has to carefully weigh the academic impact from the communication difficulty, with the prognosis from more speech minutes, and the impact of missing class time, as well as the basic scheduling needs of getting everyone’s speech minutes met.
Over the years, I’ve been humbled by school based SLPs who have gone above and beyond to try to find the perfect solution to this tricky balance. I’ve seen kids from all over the country, and been able to talk to and collaborate with SLPs from dozens of school districts. One SLP would go with the school social worker to do house calls for a family who needed help. Another SLP was willing to use her lunch break to get in extra time for a teenager who still had severe cleft speech errors.
As awe-inspiring as these individuals are, I’ve also encountered situations where the school SLP felt unable to make a case for why a child would need speech therapy in the school. Some districts still follow a grade-based criteria for determining if a speech sound disorder negatively impacts academics. So, if a child with cleft palate speech errors is getting good grades, they may not qualify for school based services. However, grades on assignments may be influenced by whoever that child’s classroom teacher is. I’ve often felt like we can do better as a society. We should be able to improve all kids’ access to speech therapy. SLPs deserve to take a lunch break (and probably are required to in many settings). A child’s potential for success in improving their communication skills shouldn’t depend on who their assigned therapist is, or what school district they live in.
Private practice cleft speech therapy may be too expensive to access
Private speech services are another option for families, but access to these private services can be challenging too. Insurance coverage for speech therapy varies, and there aren’t enough speech pathologists in private clinics either. I’ve known families who have been on waiting lists for months. Sometimes they cycle through private clinics in three month spurts, only to be put back on the waiting list.
For families paying out of pocket, private speech therapy may cost hundreds of dollars a month. Depending on the family’s circumstances, this may not be possible. Clinics that accept Medicaid may be hard to find, and sometimes families travel long distances to get to the clinics that do accept their insurance. If sessions happen weekly, this can mean an hour commute each way at least once a week. I’ve worked with kids who were 30 minutes late to a 60 minute session because the bus just didn’t come.
How can technology help improve access to speech therapy for kids with cleft palate?
I think what I realized in witnessing all these challenges families were experiencing is that my expertise, and the expertise of my coworkers and team members, only stretches as far as our physical reach. By that, I mean that in all of these stories, there are families and professionals working double time to solve an access problem. It’s not that parents don’t know their kids need speech therapy, or that there aren’t speech therapists who know how to treat cleft errors (but finding the right therapist for your child with cleft is something I get into in this post). There are amazing surgeons around the country with interdisciplinary teams with decades of collective experience. But the struggle in each of the scenarios I talk about here is that access is a burden for many families. And the ability to navigate that burden is kind of based on luck. Were you lucky enough to go to a school where the therapist could get creative to set up a schedule for your child to get one on one sessions and enough minutes of therapy? Were you lucky enough to find a private clinic close to your home, that took your insurance, with immediate availability to get started with your child for therapy two times per week at no cost to you? In over a decade of cleft team care, I can say that those types of therapy access outcomes are kind of a “holy grail.” It’s the exception, not the norm.
We all learned first hand how much we could depend on technology to keep our lives going during the Covid pandemic. For families, the struggles of virtual school and lack of reliable child care has been exhausting. But I think there are some valuable lessons about the positives of technology for speech therapy.
First, we’re continuing to grow our evidence base that virtual speech therapy works. For families who need to have access to high frequency speech therapy, this is great news. Having more options for doing therapy from your own home is a major win. Plus, because neither the parent or the therapist is commuting for a telesession, it’s much easier to use a more frequent, shorter session delivery model. This is something that I’ve loved personally, because teletherapy sessions can be more intensive. Children can engage with me in short bursts of time, which lessens the burden on the parent as facilitator for the session. Plus, it’s allowed me to work with families of kids with cleft from all of the states I’m licensed in. I can see a kiddo in Michigan and Illinois in the same day with no commute time. That’s pretty amazing when you think about it.
Asynchronous service delivery is also gaining traction along with remote patient monitoring, although these technologies haven’t quite become mainstream in speech therapy. This refers to using technology to record or track health information and then have it reviewed by a practitioner at a later time. Why would this be great for cleft palate speech therapy? Because access is so hard for speech therapy, if kids could practice their sounds at home, and then have a therapist review the practice log later on, the need to match on availability of schedules could be such a lower priority. And, as machine learning based technologies are being developed, the potential for making that home practice time more meaningful and impactful for kids with clefts is growing.
In fact, I couldn’t be more excited that this is exactly what we’re building at Verboso. Developing the tools and technologies to allow for remote speech monitoring, with fun practice for kids at home, brings huge hope to solving the therapy access problems for kids with cleft palate. If we can reduce the amount of direct time kids need with a speech pathologist, while also increasing how frequently they’re able to get in quality speech practice time, we can help kids make faster progress at lower costs. For families of kids that need frequent speech therapy, this is huge!
If you’re looking for help with getting enough speech therapy for a child with cleft, check out our therapy solutions and learn more about the speech games we’re building.
