Phoenix Children's Autism Focus
April is National Autism Awareness Month and while it’s the perfect opportunity to communicate, promote and ensure acceptance and inclusion for the tens of thousands diagnosed each year across the country, Phoenix Children’s is focusing on another very important aspect – early diagnosis.
While research has proven early intervention results in better outcomes for children with autism in the long term, it’s difficult to obtain when the national average age of diagnosis is 4 years old and, in Arizona, is even older at 4 years and 10 months. Robin Blitz, MD, director of developmental pediatrics for Barrow Neurological Institute at Phoenix Children’s, decided to tackle this problem. “Every year, more than 2,000 patients referred to us for a developmental pediatrics evaluation cannot be scheduled for an appointment because the demand for services is so great,” Dr. Blitz said. “I like to be creative in addressing societal problems. In looking at this one, I determined the only way I could help undiagnosed kids on waiting lists would be to exponentially expand the number of people in our state who are competent and confident in diagnosing, treating and providing care for children with autism.”
A Learning Collaborative
For a child to be eligible for state-supported autism services, a diagnosis must be made by a licensed clinical psychologist, child psychiatrist or developmental pediatrician. Low numbers of Arizona providers in the first two categories and the small pool of developmental pediatricians who accept Medicaid have resulted in a significant backlog of patients awaiting diagnosis. “To change this picture, we developed a six-month learning collaborative for practicing pediatricians in Arizona,” Dr. Blitz said. “Participants commit to a course that involves learning modules, reading materials, twice-monthly webinars and four days of in-person conferences and trainings.” Those who complete the learning collaborative receive continuing medical education credits and are then able to provide early diagnosis that opens access to essential services.
Early Access to Intervention
Once an autism diagnosis is made, children are entered into Arizona’s Division of Development Disabilities (DDD) system. If entered prior to reaching 4 years of age, the child is eligible for two years of applied behavior analysis (ABA) therapy. Because children who undergo ABA therapy score higher on IQ tests, demonstrate better adaptive skills and are more likely to attend grade school with their peers, they benefit from starting these services as early as possible. “My role isn’t merely to see patients,” Dr. Blitz said. “I also train and support interested practicing primary providers with the hope that all kids in Arizona can receive an early diagnosis and access to early intervention.” Regional assessment teams have been assembled to build relationships between program-trained pediatricians, early intervention experts and school personnel. The early intervention and school personnel receive training in the Autism Diagnostic Observation Scale (ADOS), a diagnostic tool for autism. Their evaluations provide supportive evidence to the pediatricians in the diagnosis of autism.
Future Training Opportunities
The Early Access to Care–AZ (EAC–AZ) training program has been refined based on feedback from the cohorts. The EAC–AZ team is working closely with Arizona’s DDD, Department of Education, Early Intervention Program and the state Medicaid system to formalize how to accept diagnoses of autism from pediatricians specially trained through the program. Until those agreements are in writing, Dr. Blitz is available to support pediatricians’ diagnoses via telemedicine or in-person consultations. “I’m excited that by working together we have the ability to change the process in Arizona and improve early identification and treatment for children with autism and their families.” And progress is definitely being made. “With the ending of the third cohort we will have trained 40 PCPs and 89 ADOS evaluators, who are members of the regional team,” Dr. Blitz said.
The EAC–AZ program is grant-funded by the Board of Visitors, Arizona’s oldest charitable organization. That means providers don’t need to pay to attend, removing yet another barrier to early diagnosis, but it also means receiving a diagnosis from a familiar face. “Because of this training, the life-changing diagnosis of autism is now coming from a familiar care provider that the family sees on a routine basis. Families can experience significant anxiety and stress during this time due to wait times, lack of familiarity with the specialist, significant travel and concern about the specialist only having a short amount of time with the child. Bringing their child to a provider they see on a routine basis and with whom they have a good relationship helps parents know the provider will fully support their child as they adjust to having a diagnosis of autism,” said Jennifer Holmgren, DO, FAAP, general pediatrician with MVP Kids Care, member of Phoenix Children’s Care Network and participant in the Early Access to Care – AZ program.
So what are the next steps to keep moving this program forward? “We are working on developing a pilot program to support parents in parent-mediated intervention for children with autism using telemedicine,” Dr. Blitz said.
If you want to learn more about EAC–AZ, call Jessica Armendariz in developmental pediatrics at Barrow Neurological Institute at Phoenix Children’s at (602) 933-2327 or firstname.lastname@example.org.