Autism study offers ideas for future services

Minnesotans with autism spectrum disorder (ASD) would benefit from full funding for programs and services, a services guidebook, and more coordination of services. Those are among many suggestions in a report released by the Autism Spectrum Disorders Task Force.

The task force was set up by the 2009 Minnesota Legislature. Its charges included studying ways to improve services provided by all state and political subdivisions. Another focus was public and private funding sources available for treatment and ways to improve efficiency in spending.

The group just released its report and held its final meeting last month. The report, as well as meeting minutes and other information, can be found at www.commissions.leg.state.mn.us/asd/asd.html

Dawn Steigauf chaired the task force. She was a parent representative and represented the Autism Society of Minnesota.“We had a very good, very thorough process,” she said. The group benefitted greatly from presentations as well as stories of shared experiences. People brought many points of view to the group and shared much useful information.

State lawmakers will be the ones who make the task force recommendations become reality. Autism is a complex developmental disability that affects a person’s ability to communicate, form relationships with others, and respond appropriately to the environment. According to the report, ASD is the fastest growing developmental disorder in the United States. The Centers for Disease Control reported in 2009 that it affects one in every 110 children.

Since 1993 there has been an increase of more than 1600% in the prevalence of ASD in Minnesotans between the ages of 6 and 22 years. The state’s December 2010 Child Count data indicates that there are presently 14,646 students identified with ASD as their primary disability. This number includes Minnesotans from infants to 21 years of age, who are receiving special education and related services in the schools. One recommendation of the task force is that more be done to determine the actual number of Minnesotans with ASD.

Task force members worked with advocates, community organizations, and the state departments of education, health and human services, and employment and economic development.

While much attention to autism focuses on children and teens, the task force also looked at ways to help people with ASD pursue independent living and higher education. Methods to improve coordination in the delivery of service between public and private agencies, health providers, and schools, and to address any geographic discrepancies in the delivery of services were topics studied by the task force, as was increasing the availability of and the training for medical providers and educators who identify and provide services to individuals with autism. The task force also studied treatment options supported by peer-reviewed, established scientific research.

The task force recommends developing and implementing a statewide autism early identification and information awareness campaign. Every Minnesota county would have a standard screening and follow-up program for all preschool-aged children.

Because early identification and intervention is critical, an identification campaign would teach community members the signs to look for and where to go for an assessment and evaluation. While there is already a universal preschool screening program for children ages 3-5, not all counties currently have Follow Along screening for children ages birth to three years.

The task force recommends that early intervention in Minnesota follow the guidelines from the American Academy of Pediatrics. Because public schools provide legal access to services for all children with autism the task force recommends Individual Family Service Plans and Individual Education Plans address a specific set of criteria for early intervention.

Another request is that a Minnesota guidebook for ASD be developed. “Navigating through the system to find the appropriate services and treatments for individuals with ASD can be daunting,” the report stated. The guidebook would be available electronically and in print form. It would be reviewed and updated every three years.

The task force recommends implementation and funding of an autism service coordinator for at least one year for children ages 3 to 5 and for school age children as deemed appropriate.

While service coordination for children ages birth to 3 is already mandated in federal law, expanding this service would provide families with more resources. Increased training for doctors to help children receive an earlier diagnosis, establishing a standard practice for diagnosis, and physician screening are also suggested. One recommendation is that every child in Minnesota has access to a primary health care professional for establishing a medical home. Within this relationship, it is recommended that each child receive developmental surveillance and screening throughout early childhood for all developmental domains, including autism spectrum conditions based on American Academy of Pediatrics guidelines.

The task force also supports an ASD teacher license. One concern the group raised is that special education teachers can graduate from Minnesota colleges and universities with very little information about ASD. Another school-related recommendation is to enforce existing policies and create strong policies where none exist to protect students from bullying. Another idea is decrease disparity for minority and immigrant children with ASD by assuring that all state agencies train staff to follow federal guidelines and provide services and resources in a manner that is culturally and linguistically appropriate.

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