Doris Hill, Ph.D., BCBA-D, an assistant research professor in the Department of Special Education, Rehabilitation, and Counseling, has for many years been working directly with individuals with autism spectrum disorder (ASD). In addition to her teaching, advocacy, and helping families and schools, she has also spent years engaged in autism and disabilities research. As a result of past legislative action and the recent fulfillment of funding, Hill is finally where she has always wanted to be: working and serving full time in her area of expertise and passion.
Hill directs the Auburn University Regional Autism Network (AU RAN). The statewide Regional Autism Network (RAN) was established by legislative action, under the direction of the Alabama Interagency Autism Coordinating Council (AIACC). Auburn University, along with four other university-based networks across the state, provides a variety of services to individuals on the autism spectrum, as well as their families. The AIACC’s statewide coordinator is Anna McConnell. In addition to Auburn, there are RANs at the University of Alabama at Birmingham (UAB), the University of South Alabama (USA), the University of Alabama in Tuscaloosa, and the University of Alabama in Huntsville (UAH).
In its 2009 founding legislation, the council was charged with developing a statewide system of care for those with ASD and their families. The same year that charge was given, the RAN was authorized to form and provide professional training programs, technical assistance and consultation, individual and family assistance, and public education programs; however, the RAN would only be allowed to form once state funding was allocated. The network was not funded for another eight years.
“Alabama’s RAN is staffed by experts in the field of ASD and developmental disabilities,” Hill explained. “Each RAN works to connect people with ASD, their families, educators, and providers to the information and services that best meets their needs. Just since the fairly recent advent of the RAN, much has been accomplished. Besides getting up and running, we have seen expanded insurance coverage for Applied Behavior Analysis (ABA) therapy passed by the Alabama Legislature. The passage of HB284 was critical in allowing access to life-changing services. Lack of availability or accessibility to services has been a persistent barrier in Alabama. Going forward, Alabamians will have improved access to needed therapies, expanded training opportunities, support to those working with people with ASD, and connection to the increasing list of resources.”
A new partner in advocacy and action
In addition to these statewide activities, Hill recently got more good news on the local front. “Just a few weeks ago, we were able to hire an energetic, professional and knowledgeable family navigator to be part of the AU RAN,” she said. “Maria Gutierrez joined us in service to our families. She is a much-welcomed addition to the AU RAN. We are the first university in Alabama to have an autism family navigator.”
Gutierrez, who was born in Mexico and is a native Spanish speaker, has a son on the autism spectrum. She and her family moved to Alabama about seven years ago.
“When I moved here from California in 2012, I immediately began looking for the resources I had grown accustomed to in California,” Gutierrez said. “I’m talking about such services as social skills training, Applied Behavior Analysis therapies, things like that. I was thrilled with the beautiful October weather and low gas prices in Alabama, but I couldn’t find those badly needed resources for my son. He was quickly losing his hard-won proficiencies and I was anxious to find help for him.”
Gutierrez ran a Google search and located Dr. Hill in Auburn’s Department of Special Education, Rehabilitation, and Counseling. Hill connected Gutierrez with other families who had children on the spectrum. Gutierrez came to the group’s initial meeting with a list of questions about local services but mostly got blank stares. She and three others in the same situation decided to set up a non-profit organization. Through their efforts, the group was formed in 2013 and qualified as a United Way of Lee County Partner Agency in 2016. Its mission was to close the gap between available resources, and help parents find a way to navigate a complicated and often frustrating system. The group called itself Lee County Autism Resource and Advocacy (LCARA).
Momentum builds for area families
“We wanted to bring an educational component to families and caregivers,” Gutierrez said. “We began meeting at Trinity United Methodist Church in Opelika and began hosting monthly educational meetings. While the professionals shared their knowledge with the parents, Auburn students volunteered their time to provide invaluable childcare. And this was all done at no cost to the families. It was a great start to a new wave of empowerment in our area.”
The group next created a program called Teens in Transition. The goal here was to enhance social skills training in an environment where no one would be judged. Again, Auburn students — especially those in the Department of Special Education, Rehabilitation, and Counseling — were instrumental in bringing this program to fruition.
“Our next step was to try to develop a summer camp program, but we were parents and not professionals,” Gutierrez said. “We had never written a grant proposal. But we applied for a grant from Children’s Harbor at Lake Martin, and they granted us the use of their amazing facilities for free. We developed a weekend respite camp that included an educational component. While professionals shared their knowledge with the parents, students provided the children with fun and safe camp activities. These University students met families in their natural environment which really gave them a chance to know the impact of disability on the family unit.”
As momentum kept building, the group was invited to make a presentation at the annual Transition Conference in Opelika. The conference is an annual event offered by the Auburn Transition Leadership Institute, a unit housed within the Department of Special Education, Rehabilitation, and Counseling. The topic was autism from a parent’s perspective. The crowd was standing room only. It had become increasingly obvious this was something families across the region desperately needed. More presentations followed across the state. While the family group thrived, Dr. Hill remained a steady partner.
“I had known Maria for a while even before this all started,” Hill said.
“Following her initial call to me, we continued to work together when I was on the coordinating council before the RANs were funded. When I chaired the Medicaid working group, Maria was appointed as a family representative and our collaborations continued at the state level.”
After Gutierrez and Dr. Hill discussed the benefits of social skills in 2016, Hill launched a series of 16-week courses that provided evidence-based social skills interventions for motivated teens in middle and high school. Entitled “Program for the Education and Enrichment of Relational Skills,” or PEERS, students were didactically taught and had the opportunity to practice and develop social skills. Gutierrez had knowledge and firsthand experience with PEERS, which is used in California, and she was excited to see it available to her community.
“We were all volunteers at LCARA and we put in a lot of hours for the benefit of families, so PEERS was another opportunity for our families,” Gutierrez said. “It is now an ongoing program sustained through Auburn Parks and Recreation’s therapeutic programs series. We’ve collaborated with vocational rehabilitation on something similar with a program called Connections. Everything we did was about connecting families. It’s still the same in my new position as family navigator.”
A final aspect of the Lee County Autism Resource and Advocacy’s work was visiting legislators. “We’d tell them our individual stories and help them see what families like ours were going through,” Gutierrez said. “This advocacy and increased understanding helped pass the insurance legislation that was so badly needed.”
But changes were on the way. The LCARA board examined its best options and decided to ultimately dissolve since services were beginning in Lee County and Gutierrez was now working with communities beyond Lee County. After years of collaboration, Dr. Hill was excited to offer Gutierrez an opportunity to expand the RAN by taking a part-time position as a family navigator as part of a Department of Mental Health contract.
The purpose of RAN is to inform, connect, train, and navigate for families impacted by ASD in the state of Alabama.
“Our AU-RAN, and the other RANs around the state, were all doing well, but we were really missing that important parent component,” Hill said. “Only parents who have walked the walk can connect with families in a real-world way. We are so fortunate to have Maria as part of the AU RAN. We couldn’t afford to lose her expertise, passion, and her knowledge.”
Gutierrez was also inspired to reach underserved communities as part of her work. She was included in a grant written and submitted to the Health Resources Services Administration (HRSA) which called for family navigators and provider training in underserved areas. In Alabama, most of the state is considered medically underserved. The AU family navigator will help identify and train family navigators and primary care providers should the grant be funded.
Being bi-lingual and culturally competent, Gutierrez has also been a resource for outreach to Spanish-speaking families as well as other minority groups. This has been a plus for all the RANs since their purpose is to inform, connect, train, and navigate for families impacted by ASD in the state of Alabama.
Hill summarized the next steps for autism research and services in Alabama. “Legislation. Litigation. Advocacy. Research. These are the things that keep the movement going forward. As a Carnegie R1 research university, Auburn is a central part of making these things happen. We are well poised to do so, and having Maria on board rounds things out for AU and for the other RANs as well. I am excited about our future in service to others and research related to outreach.”