[emphasize]CEO, Center for Neurological and Neurodevelopmental Health. [/emphasize]
As a group we’ve been honored to interact with leaders who see beyond bottom lines and operate out of strong ambition and mission. It’s a hard thing to do at times with the pressures of performance bearing down while at the same time patients seek better methods of treatment in a constantly changing healthcare environment. This is especially true in the fragmented world of behavioral pediatrics.
The Parnassus Group recently came across Kathleen Stengel and her story, a career dedicated to children with developmental disabilities. Her work spans more than 20 years of developing programs around the treatment of these individuals through her expertise in Applied Behavior Analysis (ABA). She has degrees in both Psychology and Behavior Analysis, but in talking with Kathleen, the role she’s played in this part of healthcare clearly goes far beyond academics.
“I finished my Masters degree in Applied Behavior Analysis and was licensed by age 22. I was a young service provider with all the vigor and enthusiasm a new scientist practitioner typically maintains. My job was to treat children with Autism and it was my love. As part of treatment, parent training was essential, however, no amount of formal education teaches you how to be a parent. Without children of my own at that time, it was very difficult to train parents on interacting with their own child. For me, it took a few bad assumptions and families asking for a different provider to really shape my own practice.”
Over the years Kathleen’s feet have never been far from the fire, even starting her own company where she and her team of behavior analysts worked in organizations and school districts specializing in behavior change for staff and clients. During that stint she ran everything from training to developing clinical protocols to payroll. Now the CEO of the Center for Neurological and Neurodevelopment Health in Philadelphia, PA, she still notices pieces of the puzzle that are yet to be put in place.
“My job was to treat children with Autism and it was my love”
The most notable of these for Kathleen is around clinical data that point to real outcomes. She referenced that in physical health for nursing, speech and any type of medical professional, they would first ask for things like rates of hospitalization, number of discharges, etc.
“After years of treating children with behavioral needs, I have been astounded by the lack of clinical outcomes in the behavioral health domain. The vast amount of anecdotal information that is taken as fact can be frustrating. Specifically in the area of Autism, there are many case studies of individual outcomes, but not much in the way of aggregate data and standards to strive for in our field and for these patients.”
A lot of this has to do with the maturation of the field in general according to Kathleen. It’s one that’s historically been funded through local school districts and home based private pay. With the advent of insurance coverage for ABA, the regulations and implementation standards are much different than educational standards and the single-subject design studies, while great to show progress on treatments, are difficult to aggregate and standardize outcome measures. She’ll show you 2,000 children who she made progress with and how their individual goals have been met, but what hasn’t been done is a group design to aggregate those data points for future use and to create benchmark standards.
“It is not impossible to show large outcomes, however, it is difficult to control all variables for a population that has a huge spectrum of needs with many confounding variables. At some point, though, the market and funding sources will demand outcomes. Those looking to invest or work within the field need to have outcomes as the driving force for the services that are provided.”
That’s what Kathleen has been preaching for the last 20 years in trying to get agreement on what the appropriate clinical outcomes are for this population. The field hasn’t truly arrived there yet because there isn’t agreement on baseline metrics and what aggregate outcomes look like. If you meet one child with autism you can’t necessarily generalize his/her progress with another.
For example, Kathleen referenced an individual who she worked with from the ages of 3-7 who, through treatment, no longer met the diagnostic criterion by age 7 for Autism. The same treatment for that child was provided to another in the same age group, with the same socioeconomic background and the same resources, and that child had completely different outcomes and will ultimately never fully be independent.
“It’s very hard to say this group of kids with “X” diagnoses made “This” progress. I think we can do it, but it’s very difficult to nail it down.”
We also discussed private equity as an interesting topic related to behavioral health. According to a recent Modern Healthcare article citing Bain & Co.’s 2019 private equity and corporate M&A report, in 2018 provider deals led investment domestically at 84 transactions worth $23.2 billion. The report also stated that behavioral and retail health were among two of the top categories of interest.
“Over the past several years there has been around 24 different PE groups in the autism/ABA space, which is absolutely outstanding. There are positives and negatives to having that level of interest in the field. I see mostly positive. Equity groups command a level of professionalism and set standards. This allows our field to begin to mature and see the bigger picture in treatment. It is helping the field drive toward metric driven service for larger populations.”
With the high dollar amounts being infused into the space and the level of professionalism private funding can bring, certain structure is forced and standards are put in place, which in turn reduces pseudoscience treatments and allows patients to be treated with more evidence-based practices that are higher caliber. For Kathleen that looks like a highly multi-disciplinary approach to care.
“Every aspect of behavior intervention for pediatrics has to be multifaceted with multi-disciplinary practices. Therapeutic intervention is most successful when you have a team of experts across different domains such as developmental pediatrics, behavior analysis, neuropsychology, neurology, speech and language pathologist and occupational therapy. You are able to pinpoint diagnostics and treatment while continuing to evaluate and reevaluate the treatment toward outcomes that our patients strive to achieve.”
This is easier said than done, per Kathleen, and the conversation around behavioral pediatrics is a long and complex one to be sure. Many like Kathleen have dedicated their entire careers to the field. The beginning for their journey and the ones who follow will often begin in similar fashions.
“I think you have to have a vision and a heart for the work we do, behavioral health is a difficult industry. Without an innate motivation to help someone in need, it is difficult to continue to strive forward. I continue looking for ways to help those in my service through a vision of support and outcomes. Outcomes give us hope and the ability to affect change in peoples’ lives each day. I love the fact that our services change lives and I get to support that toward a vision for others.”
Kathleen considers herself lucky because she gets a blend of all the above. It takes someone like her to stay in the game with individual patients while also rising up as a catalyst for the field as a whole.
“I think anyone who steps into a role within the areas of pediatric health, and specifically pediatric behavior health, you have to have empathy. You don’t have to have a personal connection, but you have to have a desire and a goal to be able to help someone in need.”