JFK Partners at the University of Colorado Denver, School of Medicine, is currently implementing a study on the use of telehealth (receiving treatment or services using videoconferencing technology, such as Skype) and youth with autism spectrum disorder (ASD) and anxiety. The study is an exploratory grant from Health Resources and Services Administration (HRSA) that examines the feasibility of providing an evidence-based anxiety treatment program to youth with ASD and co-occurring anxiety and their families in rural communities through online, videoconferencing technology. This study illuminates a vitally important problem families are struggling with in Colorado: a lack of funding for resources in all areas of support for their children with ASD.
With this underserved population in mind, a research team, lead by Principal Investigator Dr. Susan Hepburn, has been modifying an anxiety treatment program for delivery over the internet that helps families develop coping strategies for phobias and anxiety for their children with ASD. This type of intervention can then be delivered to families in rural areas of Colorado where there is virtually no access to expertise, and travel for treatment is prohibitive. The goal is to understand the feasibility of providing treatment to a family through sessions online that include one-to-one family and clinician time, small groups of parents with a clinician, and a website that contains educational modules. A benefit to this delivery directly into the home is that many of the children with anxiety are able to interact from their homes, in increments that work for them, rather than traveling to an unknown therapy site and interacting with a group that they don't know. Another component of this study, and one of great importance to the funder and study team, is outreach to the families of children with ASD. This outreach includes educational and training opportunities for parents, school staff and youth in these rural communities.
In the process of piloting this treatment, the study team traveled around Colorado to conduct focus groups with parents in rural communities and find out what services/supports they thought this videoconferencing technology could provide. The team met with groups of 7-10 parents in the mountain region of Roaring Fork Valley, the Yampa Valley, Durango, and Grand Junction. The team anticipated the families in rural communities to be struggling with a lack of resources. They found the groups to be rich not only with logistical information, but also provided an emotional forum for parents and the study team to be able to share their personal stories. Woven into the narratives of these wonderfully unique families, a number of themes began to emerge, as part of the rural challenge. Many parents felt disconnected from the hub of the metro Denver area. It is hard for them to travel to access the expertise in diagnosis and intervention that is simply unavailable in their areas. For example, a five hour trip one-way from a mountain community during winter months is an incredible hardship, and adds to the feeling of isolation that often accompanies trying to advocate for children with ASD. Many parents conveyed a common frustration with a lack of understanding or training among school staff involved with their children. Many of the school staff in the rural communities simply do not work with many children with ASD within their districts, and parents report they feel that their child's behaviors or learning styles are often misunderstood.
Another theme that was revealed in the discussions throughout the state was the desire for children with ASD to have a way to integrate into ongoing social and recreational activities in the general community. Community awareness was important to parents, as many felt they did not want their children to be segregated by disability. Parents expressed much frustration and emotion about both the lack of ASD-specific programming, and the difficulties in becoming an accepted and successful addition to typical, community youth activities. Some parents felt that they lived in "big hearted" communities that were lacking in awareness of how to integrate their families. While being a part of a small, rural community was thought to be a real benefit in some ways, a side effect of that small town environment is that some felt if they advocated for their child, they would be ostracized and their child would not receive the services they needed.
Some of the most poignant and emotionally charged feedback received from parents was the trend of services and supports dropping off dramatically for children with ASD at the secondary education level. Many parents felt that early intervention and elementary school experiences were more nurturing and accommodating. They felt more empowered to advocate for their children at those younger ages. Parents of children that are in middle and high school expressed an intense mismatch between the learning styles of kids with ASD and the environment of public, secondary education. These parents felt sheer exhaustion at trying to educate a teacher for every subject from year to year, and hoping for at least one teacher who "got" their child and enlist their help in navigating the complex educational and social structure of the school day.
Armed with all of the information received from spending time with parents, the study team has been able to adjust the study objectives to include opportunities for clinicians to provide webinars on specific topics, small group discussion with parents through videoconferencing, and school consultation with school teams in these rural communities. In connecting with regional parent leaders in rural communities throughout the state, the hope is to continue to collaborate on important projects to educate and build awareness of autism spectrum disorders. Essentially, this study has been a vehicle to assist families in building capacity within the existing, limited state educational resources.
Parent input and participation has been a vital component to the study, and the focus group meetings were a rare opportunity to hear about the stark realities faced by families dealing with ASD in areas where a lack of resources is impacting the stress level of the family, and exacerbating the anxiety experienced by the youth with ASD. The team is incredibly grateful for the insight, grace and vigilance of these families. The team feels that they are an inspiration in their constant search for ways to ensure the lives of their children with ASD will be happy and successful. *
Kristen Kaiser, MA is a Parent Liaison and Instructor at JFK Partners, at the University of Colorado Denver, School of Medicine. Ms. Kaiser is a community leader and parent liaison to families of children with ASD in the community, as well as those families involved in research studies. As part of the LEND faculty at the University, Ms. Kaiser co-teaches multidisciplinary post-doctoral fellows in disability and the family experience.
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