Key to Autism Access Answer Lives in Community Physicians
June 10, 2013
by Cindy Hutter
What keeps Donna Murray, senior director of the Autism Speaks Autism Treatment Network (AS-ATN), up at night?
“I think about all the families on wait lists, for months and months, to see autism specialists. I think about how people don’t have access to the critical intervention services they need,” says Murray. “We simply have to do better.”
Autism spectrum disorders (ASD) are a complex set of neurodevelopmental disorders that are expressed through a variety of behavioral and physical symptoms. The earlier children are treated for autism, the more likely they are able to progress like typically developing children. However, as the rate of autism diagnoses continues to rise, the number of specialists trained to treat children with autism has not kept pace.
NICHQ and the AS-ATN are working with 14 autism clinics across North America through the Collaborative to Improve Care for Children with Autism Spectrum Disorder to make changes that lead to better care for children with autism. The clinic teams are targeting three areas: improving access by reducing long wait times for treatment and improving treatment and outcomes for constipation and insomnia.
NICHQ recently sat down with Murray, a former site lead for the Cincinnati project team before taking on her new role with at the AS-ATN in April, to discover how sites are improving autism treatment.
Tell me about your transition from the clinic site to an oversight role at the ATN?
It is the first time in more than 25 years that I haven’t had patient contact, which is the biggest shift. In my career, I went from being a full-time clinician, to overseeing clinical operations in a multidisciplinary clinic, to directing clinical program development and management for a division. It seemed natural that the next step was to focus on an even larger scale. At the ATN, we are thinking about how we build capacity, meaning how do we improve services for children with autism, not just at one institution but in a network of sites and from there, in the broader community.
What are you discovering as you begin your new role?
There are long wait lists and high need and limited resources across centers. We have to begin to think about how we train and collaborate with individuals in community medical care settings, community-based therapeutic intervention settings and school districts. Those are the folks on the front line and it will truly “take a village.” It is not just about improving individual autism treatment sites in our network, but thinking about how we get this information out to the broader community, which will really have an impact on children receiving high-impact medical care and intervention at non-specialty sites.
How do these demands for better autism treatment translate to what the collaborative teams are doing?
The teams are working on developing guidelines for treating the common symptoms of insomnia and constipation in children with autism, as well as improving overall access to care. When we develop treatment guidelines, we can share them with primary care physicians, who might not be as comfortable following the medical needs in children with autism. Then primary care physicians may be more likely to manage these issues in individuals with ASD rather than specialists, which opens up slots in the specialized care centers for children presenting with more significant issues or diagnosis needs.
The collaborative is using an “n=one” approach. Can you explain the model and why it is being used?
In contrast to other quality improvement work, which often tests changes with small groups of patients, we have pared it down even further: we start with one patient at a time and follow his or her progress in greater detail throughout an entire system. In quality improvement work, when you are doing tests of change it is really important to think in small increments. You take that learning and you refine it. By testing changes incrementally, you can make the adjustments needed on a small scale more rapidly. You figure out what works with that one patient and then see if it holds true for five patients and then 25 patients, and so on.
With the autism spectrum being so broad, is it difficult to scale results from one patient to a larger population?
We do have a broad spectrum of children and need to think about segmenting our population because sometimes information gets lost in averages. We have spectrum variety in our “n=ones” across our different sites and since multiple sites are using this approach, we as a collaborative have data from multiple patients. The approach is still beneficial because, for example, we may find that if a patient presents in one particular way that a certain intervention is more successful. Those are the types of learnings you find in a smaller test versus a larger pool, where you may lose that critical data.
You talked about addressing the access issue by training community physicians to provide follow-up care in their local communities. Are community physicians receptive to this idea?
Yes. The more we open the lines of communication, the more physicians are going to tell us what they need from the specialists in order to build their capacity. It shouldn’t be a one-way street. We have a lot we can learn from community physicians about what they see every day, what they find challenging and what supports they need in place to feel successful seeing patients with autism. The need for services is growing exponentially; we can’t get specialists trained quickly enough so we need to partner with the community physicians to get better access.
In what other ways is the collaborative addressing access?
There are issues around what we think is happening with access and what is actually happening with access. A lot of sites have understandably been trying to improve access with Band-Aids and workarounds, such as adding short-term additional help or adding visit slots to one age group while limiting another. These workarounds are happening without having accurate data to be able to make informed decisions. Now sites are analyzing supply and demand, mapping out workflows and seeing where breakdowns are in their sites, what they can reasonably expect with current staffing and identifying changes that can have the greatest impact on access.
It’s exciting work. It’s always going to be a field that has limited resources for the demand. We can no longer think the answer is to throw more people at it because there simply aren’t enough trained people. We need to maximize what we have and utilize multidisciplinary teams to the highest level. We need to be as efficient as we can be. We can’t afford not to; there are too many children who need services.