Rational
Over the years, agencies have used different service delivery models to work with children with special needs and their families. Historically the expert-driven model was the model of choice. In the 1980s the conceptual frameworks of the family-centered model and positive behavior support (PBS) began to change the negative approaches used in the past (Turnbull & Turnbull, 2002). The experts no longer imposed their practices on the families. The family-centered model focused on the strengths and individuality of the family and included the family in authentic decision-making (Turnbull, Turbiville, & Turnbull, 2000). This new practice led to quality outcomes for the child and their family. During this same time, the preferred approach to addressing challenging behavior began changing from punitive practices to positive behavior support. Based upon extensive research, PBS is a proactive, constructive educational approach for resolving challenging behaviors. It is focused on the rights of all students to be treated with dignity and to have access to educational opportunities. At the heart of PBS is gathering information about why the behavior occurred, or the “function” of the behavior. It is grounded in person-centered values and meaningful changes to the quality of life (Becker-Cottrill, McFarland, & Anderson, 2003). The PBS process also helps to prevent problems from occurring and helps the student acquire more effective, desirable ways for interacting with the environment (Dunlap & Fox, 1999)
The preferred approach to service delivery has continued to evolve. More recent models of service delivery have been gaining momentum where services are provided as a collaborative approach to families in the context of their family situation with a focus on overall improved quality of life for the entire family. The theoretical framework behind this type of service delivery is that of collective empowerment. The collective empowerment model focuses on developing and enhancing the capacity or the power of the family, the professional team, and the community to access resources and collectively and creatively problem solve to best meet the needs of the child and family (Turnbull, Turbiville, & Turnbull, 2000).
There is much research to support the belief that family involvement in their children’s education derives many benefits and positive results. (Watson, Brown, et al., 1983; Paulson, 1994; Henderson and Berla,1995; Levine and Lezotte, 1995). It is often acknowledged that parents can be the most important resource for their children (Atroul and Friedman, 1996). According to the National Research Council (NRC) Educating the Child with Autism Report (NCR 2001), family involvement is crucial to programs for children with ASD and contributes to their effectiveness.
However, families can find it difficult to become involved and truly feel that they have a say and a part in their child’s education. Families may feel that their child is being “worked on” in isolation by an expert and without the understanding or input from the family in terms of values and goals. Sometimes barriers involving meeting times or places, other family obligations or disagreement about strategies or goals can reduce the family’s ability to become and stay involved. Some recent models of service delivery have been gaining momentum where services are provided as a collaborative approach to families in the context of their family situation with a focus on overall improved quality of life for the entire family. This service delivery model begins with gathering information about the family’s history and values and develops a home, school and community team that plans and implements activities and supports to achieve goals desired by the family.
Usefulness
The number of children with Autism Spectrum Disorders continues to increase, where the March 2012 prevalence report from the Centers for Disease Control and prevention now estimates about 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to Autism and Developmental Disabilities Monitoring (ADDM) Network. Whether this increase is due to better identification, increase awareness, changes in diagnostic criteria, a true increase or a combination, it remains that there are many more children with autism spectrum disorders than we had previously thought and they will challenge our schools, families and communities to provide effective supports and services to address their complex needs. There is a great need for a multi-level service delivery approach to match the multiple levels of needs of families and school personnel when trying to develop and implement effective plans for individuals with ASD. There is also a great need for multi-level support for individuals with ASD. It addresses both these needs, crosses environments of home, school and community and results in a team that supports the family over time. This family support process is a comprehensive intervention model combining positive behavior supports and person-centered planning for families of children with ASD. If we are to address the needs of these youth in a way that assists them to be successful and happy in school, family and community, we must engage in skill-building, systematic individualized support and relationship development across environments. Families, special educators, related service personnel and administrators are all components of the process. General educators, administrators as well as community members add to its success.
Measurable Participant Outcomes
Participants will gain knowledge of the critical components of this process. This session will describe the process used in this project to build dynamic support teams for families and schools and share outcomes across home, school and community environments. Participants will gain understanding of how this approach can be replicated by other agencies and states. The process is an intervention model that can be adopted and adapted by schools and agencies that serve individuals with ASD. It addresses both these needs, crosses environments of home, school and community and results in a team that supports the family over time. The presenter will stress the importance of a positive behavior support approach and data-based decision-making, supporting both team members and family and expanding interventions to focus on critical quality of life issues for the individual with autism. Finally, participants will be offered enough information to be able to consider if this approach to comprehensive intervention might be adopted/adapted in their local or statewide agencies and what factors and resources are involved in its implementation.
Relevance to Diversity and families
Because autism spectrum disorders affects all cultures, races, ethnicities and socioeconomic statuses, it is critical that schools and agencies understand what features of a delivery system can increase potential effectiveness with children and families of diverse backgrounds. The specific features of this service delivery that address this diversity will be discussed.
This presentation will describe the model, how it has been implemented and present outcome data that has been collected thusfar in this ongoing project. This is a service delivery model based upon collective empowerment and originates from the work of the West Virginia Autism Training Center (Becker-Cottrill, McFarland, & Anderson, 2003) and the research of Dunlap and Fox (1996;1999), among others. The West Virginia Autism Training Center developed the Family Focus Positive Behavior Support (FFPBS) process. The FFPBS was funded in part, by a grant from the Centers for Disease Control with the purpose of developing an intensive program to support families and communities in developing expertise in autism (Becker-Cottrill, McFarland, & Anderson, 2003). The model is based on the components of the Individualized Support Program (ISP) and the core principles of Positive Behavior Support. The Individualized Support program was oriented toward helping families gain the knowledge and practical skills necessary to provide effective interventions and advocacy over the course of their child’s life (Dunlap & Fox, 1999). The core principles of Positive Behavior Support, as described above, designate the process of conducting a functional assessment for the purpose of building a multi-component support plan. Together, the three models provide the foundation for the framework. The critical components of the process are (1) family and person-centered planning; (2) support teams which are comprised of the family, school personnel/employers and others involved in the focus person’s life; (3) training for support teams through educational workshops related to evidence-based practices in autism intervention; (4) the development and implementation of a comprehensive and individualized behavior support plan for each focus person with an ASD; and (5) on-going data collection and data-based decision making which is individualized to each individual family and child.
The critical components of the process are 1)family and person-centered planning, 2)support teams comprised of family, school personnel/employers and others involved in the focus person’s life, 3)training for support teams through educational workshops related to best practices in autism intervention, and 4) the development and implementation of a comprehensive and individual behavior support plan for each focus family
Kathy L. Gould, M.S.
Director
Illinois Autism Training and Technical Assistance Project
Kathy Gould is Director of the Illinois Autism Training and Technical Assistance Project, a statewide initiative of the Illinois State Board of Education. Kathy was formerly Executive Director of the Learning Disabilities Association of Hawaii, Director of Hawaii’s OSEP Parent Training Center, and helped create Hawaii’s first Autism Training Project.
