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Foreword

The Autism Spectrum Disorder Consortium was formed in March 2002 at the request of the State Interagency Council for Children’s Mental Health. The Consortium was charged with providing a unified voice to assist SIAC in understanding the needs of children and youth with Autism Spectrum Disorders.

The Consortium is a 31-member body consisting of parents representing various support groups from across the state as well as representatives of parents who may not be associated with support groups. The Consortium also includes parents who have youth in transition to adulthood. The remainder of the Consortium consists of providers of services to children with ASD and their families, staff from the Kentucky Autism Training Center, a person with Asperger Syndrome and representatives from local and state level educational authorities.  The ASD Consortium works in partnership with several identified consultants from state agencies, private non-profit agencies, evaluation centers and universities.

As the Consortium was forming, the 2002 General Assembly passed HB 455 which requires the Cabinet for Health Services to apply for a federal Medicaid waiver to address the needs of children and youth with ASD in Kentucky.  The bill includes a three-month timeframe for the application.  Despite the limited amount of time available for planning, The Department for Medicaid Services desired significant input from consumers, family members and providers and asked the Consortium to provide recommendations.  In just four working days together as a full body the Consortium developed their initial framework for recommendations for the program and included those recommendations in this document.

“Recommendations: A Framework for the Future” is an initial attempt to aid the Consortium in their future endeavors and to provide primary information to Medicaid and the SIAC members.  The document identifies numerous needs and concerns as well as initial recommendations, strategies and ideas to address the concerns.  While sharing this preliminary document with SIAC, the Consortium asks that SIAC and her member agencies be aware that the ideas and recommendations included in the document are first steps and provide simply a framework based on the information available to the Consortium at the time. It is anticipated that the recommendations will evolve over time and will include more detail to aid the agencies in possible implementation.

Purpose of the Consortium

Prior to the formation of the Consortium, state agencies and policy makers were being besieged with massive amounts of differing types of information and ideas from various organizations, providers and families on the best approaches to serving children and youth with ASD. Many of the suggestions and ideas were conflicting in nature. These conflicts resulted in frustration, anger and eventually stagnation of progress for children with ASD.  The ASD Consortium was formed to provide a unified voice by collectively utilizing the expansive expertise of the members. The

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