Issue 20: Collaboration Between Service Providers and Caregivers: Better Outcomes through Working Together | Carrie Cherney Hahn

Before I was a mom, I was a pediatric speech-language pathologist (SLP), and before I was a pediatric SLP, I was a graduate student. In graduate school, many classes center around formal aspects of speech-language pathology, like assessment procedures, evaluation considerations, diagnoses, and treatment strategies. The model is designed to create professionals who feel confident in their abilities to serve the clients that are on their caseload. Professionalism has an implication of independent competence. When I was in graduate school, what I envisioned professional competence to look like was a service provider who walked into the room knowing exactly what to do. I had no idea, at that time, how competence in caregiver collaboration is a key element in being an ethical and impactful practitioner.

When I was in graduate school, I had a unique opportunity to participate in a grant project called the Communication and Autism Project. (CAP) In addition to taking autism-related coursework every semester and doing graduate research related to autism, CAP also paired students up with a family who had at least one autistic child. As a part of CAP, I went on community outings with the family that I was paired with and provided respite care to them every month.

I don’t care if he ever strings a single bead in his entire life. I would love for him to be able to pull his pants up, though.

At the time, I had no idea how positively impactful or rare this opportunity was. Because I was paired with a family, I had the opportunity to experience day-to-day happenings in their home. I had the opportunity to hear the primary caregiver talk about upcoming IEPs, her feelings about goals that service providers were recommending, and her explanations regarding their misalignment. I’ll never forget when she told me how annoyed she was that her son’s occupational therapist was recommending a goal for stringing beads. “I don’t care if he ever strings a single bead in his entire life. I would love for him to be able to pull his pants up, though.”

This experience was invaluable and offered me a different perspective. In graduate school, much of my instruction was “by the book,” and what I didn’t know then that I know now is that “the books” that we are instructed from have historically not been written by people who have ever actually received service or cared for someone who has.

After graduation, my first couple of jobs were in settings that limited my interaction with caregivers. In these settings, the clients that I served typically arrived at the setting via bus, and the only opportunity that I had to connect with caregivers was via phone call or during meetings, which didn’t happen very often. In these settings, my role was often more prescriptive and without the level of caregiver input that I now have come to consider to be ideal.

After about four years as an SLP, I was assigned to work with the birth-to-three population, and services were provided in the home. Collaboration with the child’s primary caregiver was a foundational principle of these services. The model that I was operating in while working with the birth-to-three population was to be flexible and collaborative. We were to check in with the caregiver at the beginning of each session to find out what was most pressing and then come up with a plan together of what might help. I was initially a bit nervous, as I had become accustomed to pre-planning my sessions, and felt anxious about being able to “think on my feet.”

‘The books’ that we are instructed from have historically not been written by people who have ever actually received service or cared for someone who has.

Looking back, I had no idea at the time that this model would help me develop the skills that I did not receive a lot of instruction on during school but would someday consider to be the most important.

Once I settled into this model, I absolutely loved it. I found that collaborating with parents was not only best for the child, but it also helped me understand a couple of very important concepts that are paramount to service provision; that the caregiver is a wealth of information and instinct and that the functional impact of service is of greatest significance. I looked forward to interactions with caregivers and became a bit of a meeting nerd, loving every chance I had to sit down and talk to caregivers about their kids.

Shortly after the opportunity to do birth-to-three services, I became a mom to my older son, whom I will refer to as Pete. As a recently self-diagnosed ADHDer, I have discovered that my investment in knowing topics of interest inside and out is a gift of my neurology, and my kids are at the top of my list of interests. Pete is now 12, but when he was in preschool, and I found out that they did parent-teacher conferences, I was absolutely thrilled. I looked forward to sitting down with his teacher and talking about nothing but my kid for the 10 to 15 minutes that I was allotted. I always had a million questions and probably kept them over time because I love to talk about my kids.

When Pete was almost 6, we adopted his younger brother, who was 4 1/2 at the time. We’ll call my younger son Dan. Dan is blind and has other disabilities, so we had already had a meeting about Dan with the early childhood program that would be serving him before we even brought him home from China. The long IEP meetings were so much fun for me. Dan had a comprehensive set of services lined up with service providers who were excited to work with him, and I enjoyed the chance to talk about him and his progress.

In the summer, when Pete was 8, he was diagnosed with dyslexia and ADHD. He attended the same school as Dan, and Dan had been so well supported by his school team that I assumed support for Pete would come swiftly and without incident. I eagerly anticipated the meeting, like I did all of his parent-teacher conferences and all of Dan’s IEP meetings. What happened in the meeting, and in the two meetings after it, came out of left field. I found myself explaining all the ways that Pete’s inability to read was negatively impacting him and was met with stiff rigidity, eligibility criterion exclusions, and dismissal of my attempts to explain that they were getting it wrong. The tense energy and resistance was disorienting to me.

Every meeting I had ever been to prior, whether I was the SLP or the parent, had felt collaborative. I had always felt the positive energy and connection that came when people were invested in a child and sharing supportive information and ideas. These meetings about Pete felt very different. There was disconnection and a power dynamic that felt terrible on my end. As a professional, I suspect that dynamic doesn’t feel great on their end either, but, nonetheless, it took up the space between us. I tried getting creative in my attempts to remedy what felt like an unwillingness to partner. It felt like there was a wall of glass between us, and they, holding all the power, were looking down on me - not hearing me and not interested in information that I knew was paramount to the situation. I was shattered.

It felt like there was a wall of glass between us, and they, holding all the power, were looking down on me - not hearing me and not interested in information that I knew was paramount to the situation.

After having this experience with Pete, I have connected with other parents who have had similar experiences during meetings with their child’s service providers or administrators. Based on my experience as an SLP who has years of positive collaboration with caregivers, our experience with Pete, and the experiences that other parents have shared with me, I have come to a few conclusions about collaboration between service providers and caregivers.

1. Caregivers have countless hours of direct experience with their kids, as well as instincts about them. Both are invaluable. In our experience with Pete, the administrator finally had to acknowledge that what I was saying was accurate, but only after being initially resistant and their data eventually confirming it. It turned out that I understood his struggles more thoroughly than they did. That was after time wasted that was very hard on Pete’s self-esteem and quality of life.
2. It takes the same amount of energy, if not more, to push back than it does to take the time to listen to caregivers and put effort into doing everything you can to honor what they are telling you. Certainly, administrative and systemic barriers sometimes compromise what can be done at any given moment. A service provider that hears and affirms caregivers, however, and outlines what those barriers are and what is planned to address them is demonstrating a commitment to partnership. There have been times as a professional when I have said, “If we can’t overcome this particular barrier, I promise you I will do everything I can to equip you with information and resources that will move you past what I can help with and move you closer to what you know your child needs.”
3. When professionals are rigid and don’t leave time or space to collaborate WITH caregivers, we miss the opportunity for partnership. Partnerships with caregivers often bring positive impacts beyond what can be accomplished without them. Outcomes are typically better when people are working together.
4. As professionals, we have the education that empowers us to support clients, but we must not forget that the client and/or their caregivers should be dictating the relevance of what we have to offer for THEIR life. Part of our job is to explain the ins and outs of our profession, findings, and recommendations to clients/caregivers, but they should be given the autonomy to decide which of our offerings they decide to take OR leave.

Partnerships with caregivers often bring positive impacts beyond what can be accomplished without them.

Whether you are sitting on the professional side of the table or the caregiver side, the best interest of the child who needs support should be what everyone has in common. When we keep that in mind and commit to a partnership, we can facilitate positive outcomes through working together.

Carrie Cherney Hahn

Carrie Cherney Hahn is a pediatric speech-language pathologist and mother. She has served children of a variety of ages in a variety of settings and has taken on additional endeavors of interest, such as an autism support group for caregivers, the distribution of a parent education newsletter, and giving talks at conferences for family advocacy groups. She creates and shares content related to disability and neurodivergence on her website and social media and uses her platform to promote education and advocacy. Hahn is the mother of two neurodivergent children, one of whom also has physical disabilities. Her book ‘Beyond Inclusion: Raising Anti-Ableist Kids” is set to be published in July 2024. Carrie’s professional and personal lives have intensified her passion for making a safer and less ableist world.

Extracts from Dystinct Magazine