A research and progress report from Autism Speaks’ 2016 summer intern for public health
By Kelley Kraemer, Autism Speaks’ 2016 summer intern for public health and a student at the College of the Holy Cross, in Worcester, Mass. Autism Speaks enjoys a special relationship with Holy Cross, the alma mater of co-founder Bob Wright.
As I wrap up a wonderful summer at Autism Speaks, I’m pleased to share the findings of my internship research project. I’d like to start with a little about what made my assignment so deeply meaningful for me.
During high school, I volunteered and then interned in the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center. The center is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN).
My days in the clinic were beyond rewarding. My experiences with the patients, families and staff fostered and nurtured my interest in autism.
At the same time, I couldn’t help but notice that most of the families receiving services were suburban and urban and ranged from middle to upper class. Where were the families from rural areas? Where were the less affluent?
So I was thrilled to learn that my Autism Speaks internship project would have the potential to directly benefit these two groups of underserved children and families. Specifically, my assignment was to identify, assess and recommend state and federally funded programs that would be appropriate for implementation of the World Health Organization’s Parent Skills Training program, which Autism Speaks helped develop.
Learn more about the WHO Parent Skills training program, developed in collaboration with Autism Speaks, here.
The program’s goal is to support families who lack access to adequate professional autism care for whatever reason. It involves a system of master trainers and community facilitators who provide parents and other caregivers with evidence-based strategies for working with children who have autism and other developmental disabilities.
Trainers instruct parents in groups and one-on-one home visits, teaching them how to address their child’s social and behavioral challenges. A crucial aspect of this program is its flexibility and adaptability to the cultural needs of a community, be it overseas or here in North America. By design, it fits into a community’s existing health and education programs – crucial for reducing the costs of implementing the program so that it can be provided free of charge to families.
That’s where my summer project came in: Finding the state and federally funded programs that would be a good fit for facilitating Parent Skills Training programs for American families. I found several programs funded through the Autism Cares Act and Title V Block Grants that might be a great fit. They included:
Autism Cares and the Autism Speaks ATN
The Autism Cares Act (originally the Combating Autism Act of 2006) supports autism-specific research and service programs in the United States. For instance, the act funds the Autism Speaks ATN in its role as the Autism Intervention Research Network for Physical Health. As part of this work, the 14 centers in the Autism Speaks ATN provide parent education programs in their communities. Potentially a great fit for WHO Parents Skills Training.
Title V and autism
Congress created the Title V Block Grant program to ensure the health and wellbeing of mothers and children. Already, the program supports a broad range of services for children with autism across the nation. It’s another potential avenue for delivering Parent Skills Training to communities and families who need it across the United States.
I finished my summer internship feeling tremendously hopeful that the WHO Parent Skills Training program could soon be benefitting families across the United States – not as a substitute for professional services, but as a much-needed support for the many families who live far from autism specialty centers and/or end up on long waitlists for autism services in their communities.
In closing, I want to thank the many people on the public health, family services and advocacy teams who supported my work this summer – as well as the larger Autism Speaks community who so generously funds the organization’s mission through their donations and volunteer work.