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The Missouri Rapid Response Project

Background Information

Parents of children with autism spectrum disorders (ASD) and other developmental disabilities report significant challenges in their ability to access comprehensive and coordinated care. Service systems are fragmented and families face significant problems in navigating the system of care. Over the years, family members, professionals, and state agency personnel from Missouri have worked together to address these concerns.

The action steps, shown in the map below, have built a foundation of public-private partnerships in Missouri that promote a more rapid and effective response to the needs of children and families. In 2008, Missouri was one of six states to be awarded a State Implementation grant to improve comprehensive and coordinated care for children and youth with ASD and other developmental disorders (Health Resources and Services Administration [HRSA] funding from 2008-2011). The MU Thompson Center administers this grant with our state partners:

Focus areas of this project are:

Care Coordination and Family Supports
Family-Professional Partnerships
Learning Collaboratives
Youth Transition Activities
Systems Change
- Access to Care Issue Brief

Care Coordination and Family Supports

The current project has implemented a care coordination model for children with ASD at three diagnostic and treatment centers across the state. Elements of the model include:

Family Resource Specialists

identify unmet child and family needs,
link families to needed information and resources, and
support effective communication among families, primary and specialty care providers, and other community professionals.

Family Mentors

provide emotional support through parent-to-parent mentoring
partner with the statewide Sharing-Our-Strengths program at the University of Missouri-Kansas City for sustainability

Family-Professional Partnerships

The project has created a model program to enhance family-professional partnerships.

ASD Family-Centered Care Survey developed and tested.
ASD Family-Professional Task Force formed to identify common goals for quality improvement in clinical settings.
ASD Quality Improvement strategies under development that measure outcomes of activities that aim to improve child- and family-centered care.

One of our partners, University of Missouri-Kansas City Institute for Human Development (UMKC-IHD), has developed a method to prepare families for leadership and advocacy roles.

Learning Collaboratives

Learning collaboratives have been established to improve the quality of care for individuals with ASD in community settings. This involves bringing together key stakeholders, setting goals for quality improvement and taking action to achieve these goals.

Central Missouri Rapid Response Initiative. Established in 2006, the “Rapid Response” pilot project in central Missouri was designed to build community capacity for timely access to ASD screening, diagnosis, and evidence-based interventions for children 0-5 years and their families. Community professionals in this Learning Collaborative still work together to enhance awareness of ASD, build child and family support systems, and encourage rapid access to high quality, coordinated care. For instance, members of this group have developed two training modules – Understanding Autism and ASD Screening and Referral – that have been delivered to audiences across the state. One of the partners, the University of Missouri Extension Office, helps presenters to disseminate the training modules through its remote Interactive television (ITV) feed, thereby allowing greater access to the training by services providers at 14 sites across the state. In addition, the Extension Office is hosting a free, online version of the Understanding Autism module to ensure continued access to the information by families, students, and services providers across the state.

St. Louis Rapid Response Initiative. This Rapid Response Learning Collaborative is under development, with a group of professionals and families in the process of identifying activities to improve the ASD system of care in their own community. In Year 3 of the grant, two more Rapid Response Learning Collaboratives will be formed.

Youth Transition Activities

ASD Youth Coalition :This group brings together individuals with ASD, families, and service providers to focus on activities in Missouri that would better support the transition from adolescence to adulthood for those with ASD. Members include representatives from local and state agencies that serve individuals with special health care needs; University-based agencies such as the MU Thompson Center for Autism and Neuordevelopmental Disorders, UMKC Institute for Human Development(UMKC-IHD), and University of Missouri Extension; and the local school system. Currently, the Coalition is focused on developing an ASD-specific training module that would provide an overview of services needed for a successful transition to adulthood for youth with ASD. The group has also developed a list of web based resources on youth transition.
Youth Advisory Council: This group is facilitated by our partners at UMKC-IHD. It is comprised primarily of youth with special healthcare needs, including ASD and other developmental disabilities. The group has convened a series of focus groups across the state to gain input on the healthcare transition services needed by YSHCN. The Council members will then develop training materials to help educate youth, their families, and service providers on the services needed for a successful healthcare transition and how to obtain those services.
The Thompson Center offers a list of resources that may be helpful in planning the transition of a child with ASD into adulthood. Visit Transitioning into adulthood with ASD.

Systems Change

Missouri Autism Guidelines Initiative: Partners in the State Implementation grant provided leadership to the development of Missouri’s best practice guidelines for ASD screening, diagnosis and assessment for treatment planning. This document will be published by March 2010.
Access to Care Issue Brief: This Issue Brief provides information on the unmet needs of MO families that have a child with autism. Nearly three-quarters of children (71%) did not receive needed behavioral therapies and almost two-thirds of families (61%) were not able to obtain needed family mental health services. Only 20% of parents of children with ASD reported having a medical home.
These data were collected as part of a three-year state autism implementation grant from the Health Resources and Services Administration that the TC received in 2008. A portion of this grant involved a partnership with Dr. Paul Law at Kennedy Krieger Institute in Baltimore, Maryland, to survey families in Missouri and across the nation about their ability to get services for children with ASD. Dr. Law developed a national, voluntary, online autism registry called the Interactive Autism Network (IAN) that was launched in 2007.

Thompson Center Autism Intervention Conference: This annual conference will focus on topics that have the potential to improve comprehensive and coordinated care, such as transitions across the lifespan, best practice guidelines, care coordination strategies, and workshops on evidence-based treatments included in the National ASD Standards of Care.

Our partners in the Division of Developmental Disabilities and Missouri Families for Effective Autism Treatment (MO-FEAT) developed a guide for families and professionals called, Navigating Autism Services: A Community Guide for Missouri. The HRSA grant funding has helped disseminate this guide, and it is also free and available online.

Thompson Center for Autism and Neurodevelopmental Disorders

University of Missouri