Minnesota Autism/ASD Summit Committee State Plan

Summer 2011 Minnesota Autism/ASD Summit Committee State Plan Prepared by: Minnesota Autism/ASD Summit Collaborative Autism Society of Minnesota ARC Greater Twin Cities Autism Advocacy and Law Center Center for Advanced Studies in Child Welfare (CASCW) Minnesota Chapter of the American Academy of Pediatrics (MNAAP) Minnesota Department of Education Minnesota Department of Health Minnesota Department of Human Services Minnesota Early Autism Project Somali American Autism Foundation (SAAF) University of Minnesota (ASD Clinic, Minnesota LEND, Institute on Community Integration UCEDD) Parents, self- advocates, and family members Supporting Organizations ARC Minnesota, Minnesota Governor s Council on Developmental Disabilities, Minnesota House/Senate Autism Task Force Minnesota LEND Leadership Education in Neurodevelopmental and Related Disabilities with funding from DHHS MCH grant # #T73MC12835

Background: Autism Spectrum Disorders (ASD) in Minnesota Autism Spectrum Disorder (ASD) is currently the fastest growing developmental disability in the United States. ASD refers to a complex group of neurodevelopmental disabilities with significant impairments in important functional skills such as communication and socialization. The term autism is often used synonymously with Autism Spectrum Disorders (ASD) and for clarity, the term ASD will be used here to include the related pervasive developmental disorders such autism, Asperger s disorder and PDD- NOS. Differential diagnosis is based on the presence of an identified set or spectrum of behaviors that can affect individuals in different ways. Challenging behavioral issues such as restricted, narrow interests and repetitive behaviors are common in individuals with autism/asd. Symptoms typically appear before age three and persist throughout the lifespan. Intellectual cognitive disabilities are present is a large percentage of individuals with autism/asd. It is estimated that approximately 1.5 million individuals in the U.S. have an autism/asd diagnosis. Most recent estimates from the Centers for Disease Control (CDC) indicate that one in 110 children are currently diagnosed with an Autism Spectrum Disorder (ASD). When the numbers are stratified by gender, the prevalence rates among boys are 1 in 70. In Minnesota there has been more than a 1600% increase in the prevalence of ASD between the ages of 6 and 22 years since 1993 (Center for Disease Control 2010; Data Accountability Center, 2011). Statewide administrative prevalence data from schools indicates that 10.9% of the statewide special education population is identified as having an Autism Spectrum Disorder (Minnesota Department of Education, 2009). Among children who have neurodevelopmental disabilities (NDDs) such as autism/asd, access to adequate health care and educational services are major challenges (i.e. early identification/ diagnosis, access to community services, education, medical treatment and transition preparation to adult life (Minnesota Deptpartment of Health, 2009). Further, significant disparities exist across both socioeconomic and ethnic/racial groups in ASD diagnosis and access to intervention services (Liptak et al. 2008, Mandell et al., 2009). The increase in autism/asd prevalence highlights the need for high quality, accessible services and supports that extend throughout the lifespan. Ongoing, effective supports are required to enable not only young children, but also adolescents and adults, to live healthy and productive lives in their own communities. It is essential that all individuals with autism/asd receive individualized, evidence- based, culturally responsive, inter- disciplinary services and supports. However, autism/asd services and supports have been both vital and costly. The available, yet limited research suggests that the cost of autism/asd over a lifespan is approximately 2.5 to 4.4 million dollars per person (Ganz, 2006, 2007; Jacobson, Mulick, & Green, 1998; Jarbrink & Knapp, 2001). Without modifications or changes to the current systems, the significant expense associated with supporting people with autism/asd is only expected to increase in the upcoming years (Gerhardt et al., 2009). In Minnesota, the significant challenges and costs of providing these services to the growing population of individuals with autism/asd continue to mount. The significant expense associated with autism/asd services can be partially attributed to the lack of well- coordinated, specialized support systems for individuals with autism/asd. Yet, coordinated, interagency lifespan services have not been developed nor implemented in the state. Research suggests that the cost of lifelong supports can be decreased by as much as two- thirds with early diagnosis, appropriate intervention, and effective coordination of services (Jarbrink & Knapp, 2001). Research also suggests that significant cost savings can occur if intervention is coordinated appropriately and if there is a good support match for individuals and families with autism/asd (AUSM, 2010). Thus, a significant need exists for statewide leadership across professional disciplines, state agencies, universities, autism organizations, and other service providers will to identify, coordinate, and build capacity for these services for individuals with autism/asd, their families, and support systems in the state of Minnesota. Further, the development of a uniform, interdisciplinary statewide plan will Minnesota Autism/ASD Summit Committee State Plan 2

support the efficient use of state and federal dollars and effective implementation of high quality, evidence- based culturally appropriate services and supports for individuals with autism/asd in Minnesota. Minnesota Autism/ASD Summit Committee The Minnesota Autism/ASD Summit Committee was created to address the growing concerns about autism/asd in Minnesota. This task force is a voluntary interagency and multi- stakeholder committee on autism/asds. The purpose of the Minnesota Autism/ASD Summit Committee is to provide leadership and innovation in inter- disciplinary education, community service, research, and to disseminate information to strengthen and increase the capacity of local communities to support and include individuals with autism/asd and their families in all aspects of life in the community. The professional and personal expertise of participating members supports better coordination of services and implementation of effective supports for individuals with autism/asd and their families. Specific activities of the Committee include: Provide an interdisciplinary forum to increase communication and understanding among major autism- related non- profit organizations, community groups, governmental agencies, and universities. Facilitate communication, collaboration, and consensus among professionals, member organizations, researchers, and agencies. Support an active autism/asd research program in Minnesota. Share and disseminate current autism/asd evidenced- based interventions, and promising practices across disciplines. Collaborate across agencies /organizations to utilize county, state, and federal resources efficiently. Identify and address primary state needs in services and supports related to autism/asd. Make recommendations and advocate for full implementation of these recommendations on key issues affecting individuals with autism/asd, their families, and systems of support. Develop and disseminate a comprehensive statewide plan in the area of autism/autism spectrum disorders to clarify needs, identify supports, improve practice, and increase statewide capacity for serving individuals with autism/asd and their families across the lifespan. Decrease disparities in autism assessment, diagnosis, and access to services among culturally/linguistically diverse communities by improving culturally/linguistically relevant services. The entities that have participated in this effort thus far include representatives from state agencies (Minnesota Department of Education, Minnesota Department of Health, Autism nonprofit organizations (Autism Society of Minnesota, Minnesota Early Autism Project), Autism Law and Advocacy Center, Center for Advanced Studies in Child Welfare (CASCW), the University of Minnesota (ASD clinic, Minnesota LEND, Institute on Community Integration), Somali American Autism Foundation (SAAF), Minnesota Chapter of the American Academy of Pediatrics (MNAAP), parents, self- advocates, other youth and family serving organizations for people with disabilities (Arc GTC). Supporting organizations include ARC Minnesota, Minnesota Governor's Council on Developmental Disabilities, and Minnesota House/Senate Autism Task Force. Additional stakeholders have been invited to attend and are welcome to join the group at any time. Minnesota Autism/ASD Summit Committee State Plan 3

Essential Groundwork for Improving Autism/ASD Services in Minnesota The Minnesota Autism/ASD Summit Committee evolved from participation in a Region V Know the Signs Act Early Summit that was held in Indianapolis, Indiana in the Fall 2010. This summit was funded by the Centers for Disease Control (CDC) and organized by the Association of University Centers on Disability (AUCD). A Minnesota team attended this event and learned about the activities in Region V states regarding autism/asd services and supports. Through a facilitated, structured process the Minnesota state team began the work of identifying desired impacts and outcomes related to autism/asd services in Minnesota. Collectively, the Minnesota Autism/ASD Summit Committee advocates long- term systems changes to the current service delivery system. These changes include comprehensive access to early autism screening, access, and early intervention services; ongoing training of all types of professionals who work with individuals with autism/asd; smooth transitions across different service delivery systems; fully funded and culturally effective provider and family support services across the lifespan; and improved research and capacity to identify and implement evidence- based and promising practices. Such systems improvements are essential and will benefit not only individuals with autism/asd and their families, but all people with disabilities in the state of Minnesota. At the request of Minnesota s Legislative Task Force of Autism, a presentation on the work of this Committee was requested in the winter of 2010. The activities and recommendations of this Committee were reported and further collaboration was encouraged by the Legislative Task Force to promote the joint development of a state strategic plan. The Minnesota Autism/ASD Summit Committee identified three primary impact areas where significant change needs to be made to improve the system of care and supports for individuals with autism/asd: Early intervention, Transition, and Funding. Impact #1: Early and timely (less than 90 days) access in every region of the state to a seamless procedure for screening, referral, and initiation of culturally responsive, high quality, evidenced- based services. Impact #2: Children transition smoothly from early intervention to school to adult services and supports. Impact #3: Funding assured for every individual with autism/asd in need, and multiple funding options for needed services/interventions (e.g., health plans, education, social services) are available. Pathways to Achieve Minnesota Autism/ASD Summit Committee The Minnesota Autism Summit Committee used a logic model format provided by the CDC to develop their statewide plan. The logic model is a tool that allows planners to develop a plan in graphic form and to specify linkages in the primary impact areas of early intervention, transition, and funding between activities (e.g., what will be done, who will participate), outputs (e.g., what will be developed), and long- term outcomes (e.g., what will be the long- term results) for individuals with autism/asd and their families. 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Impact #1: Early and timely (less than 90 days) access in every region of the state to a seamless procedure for screening, referral, and initiation of culturally responsive, high quality, evidenced based services. Activities Develop a statewide interdisciplinary pool of experts (education, medicine, community services, psychology, special therapies, public health, social work, family) to identify, coordinate, and promote universal autism/asd screening. Develop an accessible informational resource around autism screening/early autism symptoms for families/care providers; publicize this resource to ensure the message is distributed across communities statewide. Create a statewide referral system (data collection/data base) coordinating screening results with links to referrals and connections to autism/asd services. Re- conceptualize, re- formulate, and re- define the Individual Family Service Plan (IFSP) team with a commitment to interagency service coordination; maximize Part C Service Coordination role; and define roles within the team. Increase professional capacity by developing an interdisciplinary training module for professionals to receive certification in autism/asd. A specific focus on training of professionals to work within diverse, under- represented communities. Outputs A comprehensive statewide roadmap around screening, referral, and access to statewide services. Standardized, statewide timeline outlining the process for access to early intervention services. Each step will have an accompanying timeline (e.g., access to services within 45 days of a failed screen). A comprehensive statewide resource list of autism/asd assessment and intervention is created that includes information on culturally competent, evidence- based treatment for children with autism/asd; Resource is made widely available across diverse groups and communities in Minnesota. Monitoring and surveillance systems are created and sustained; Sustainable professional partnerships are created. Comprehensive, family- centered, culturally responsive interagency education plans are created for young children with autism/asd and their families or alternate caregivers. Roles within each interagency team are clearly defined, increased professional accountability; coordination of medical, educational, and community support systems. Outcomes All communities in Minnesota have universal access to autism/asd screening and autism/asd assessment teams. Parents, alternative caregivers, communities, and providers are aware of systems of support regarding autism/asd ( e.g., screening, assessment, identification, referral, services). Seamless transition for children, parents, and alternate caregivers exists between time of a failed screen, a referral to specialist, and links to evidenced- based community services. Early identification, referral and entrance into high quality, culturally responsive, evidence- based autism/asd services for all children at the local level. Less disparity across communities in access to autism/asd screening, assessment, and intervention services. Meaningful, authentic interagency service coordination including improved interagency communication and interdisciplinary collaboration. Minnesota Autism/ASD Summit Committee State Plan 5

Impact #2: Individuals transition smoothly from early intervention to school to adult services and supports. Activities Create a working group to leverage available and emerging technology (hardware, software, social/virtual networks) for children, adolescents, and adults with autism/asd and their families/supports. Develop a community opportunities document as a guide for individuals, their families or alternative caregivers, and supports in identifying what activities are important to access in order to develop the skills to succeed in life. Re- establish the composition of planning teams (Individual Family Service Plan, Individual Education Plan, transition plans, Individual Service Plan) to include the most knowledgeable and relevant people around individuals with autism/asd at each transition stage (e.g., education, specialty therapies, medicine, psychology, psychiatry, public health), and establish a team representative as a service coordinator. Develop high quality state employment programs including work internships, mentor partnerships, and employer engagement programs for adults with autism/asd. Outputs A comprehensive resource and process road map will be created that describes which agencies, and specific supports within them, can be utilized by individuals with autism/asd, their families or alternate caregivers, and supports to identify in advance, and achieve, transition goals the major transition points. A guide for integrating elements of person- centered planning into existing planning processes (Individual Family Service Plan, Individual Education Plan, transition plans, Individual Service Plan) will be created; more comprehensive person- centered plans are triggered by individual/family/alternate caregiver request or when representatives of two or more agencies (e.g., County Human Services, Department of Health) are involved. A comprehensive employment training program targeting individuals with autism/asd will be developed including job skills, mentor connections, internships, and engagement programs with employers. Outcomes Individuals with autism/asd and their families and/or alternate caregivers are full partners in the transition planning process. Individuals with autism/asd and their families or alternate caregivers are satisfied with the preparation for and execution of the transition process. Meaningful functional outcomes are achieved through the transition process for individuals with autism/asd. Caregivers and direct support professionals are equipped to support individuals with autism/asd and their families or alternate caregivers to achieve their goals at each transition stage. Individuals with autism/asd have meaningful, high quality employment. Reduced rates of unemployment among adults with autism/asd. Caregivers and direct support professionals are equipped with knowledge, evidenced- based practices, skills and attitudes to support individuals with autism/asd and their families to achieve their goals across the lifespan. Minnesota Autism/ASD Summit Committee State Plan 6

Impact # 3: Assure funding for every individual with ASD, and assure health plans, education, social services). Activities Create a campaign to increase the use of self directed services. Explore new options for consumer directed services under the Medicaid program such as 1915(j), 1915(i) and 1915(k). Increase services provided in the community and home while simultaneously reduce inpatient and institutional care. Enroll and certify additional fee for service early intervention providers that specialize in services for children with autism/asd. Implement an awareness campaign to ensure that advocacy organizations, families, and/or alternate caregivers understand Intensive Early Intervention Behavior Therapy (IEIBT) and Medical Assistance (MA) fee for service. Create an interdisciplinary statewide stakeholder committee to identify, coordinate, and access state federal funds for children, adolescents, and adults with autism/asd. Conduct a cost benefit analysis of how various types of funding are used in the most efficient and effective way to support children and adults with autism/asd and their families/caregivers. Develop and promote training on funding opportunities for individuals, their families or alternate caregivers, and supports in identifying what funding is available and how to access these funds. Define roles, responsibilities and services offered by all state agencies (and related local designees) for children and adults with autism/asd. Outputs A statewide data collection system will be created to identify current funding sources (e.g., health plans, education, social services) for services/interventions in several categories (e.g., child skills training/applied Behavior Analysis, parent skills training, psychotherapy, medication, Occupational Therapy, Physical Therapy, speech, complimentary/alternative therapies). A comprehensive funding guide will be created that describes which funding sources, and specific supports associated them, can be utilized by individuals with autism/asd, their families or alternate caregivers, and supports. Well- developed, interdisciplinary series of educational training workshops with a focus on multiple sources of funding and service options presented across the state to families, caregivers, and allies/advocates. Preferred focus will be paid underrepresented groups. Outcomes Individuals with autism/asd and their families/alternate caregivers have equal access to well coordinated, affordable, efficient systems of funding for needed services and supports. There are savings to the state budget as a result of increased use of consumer directed options, maximized use of federal match and utilization of private resources. Meaningful, authentic interagency service coordination exists including improved interagency communication and interdisciplinary collaboration; less redundancy in funding; more effective and efficient use of state and federal funds. Minnesota Autism/ASD Summit Committee State Plan 7

Conclusion Autism/ASD prevalence rates continue to increase in the state of Minnesota, statewide service systems need to change to accommodate the specific and unique needs associated with this group of individuals and their families/caregivers. Significant challenges of access to well- coordinated, high quality, culturally appropriate ASD/autism services exist in the current statewide system. There is an urgent need to move forward to address these challenges with a comprehensive, interdisciplinary, and culturally- responsive approach. The Minnesota Autism/ASD Summit Committee provides this interdisciplinary coordination and communication across multiple statewide agencies, autism nonprofit organizations, parent and self- advocacy groups, and the University of Minnesota. The recommendations of this committee target long- term systems level changes to the current statewide system in the areas of early intervention, transition across systems, and funding. Further, these recommendations will support the efficient use of state and federal dollars and effective implementation of high quality, evidence- based services for individuals with autism/asd. These goals are essential first steps that should be taken immediately to improve the current system of care for individuals with autism/ ASD and their families in the state of Minnesota. Minnesota LEND lend.umn.edu Leadership Education in Neurodevelopmental Disabilities University of Minnesota School of Medicine, Department of Pediatrics Institute on Community Integration, University Center for Excellence in Developmental Disabilities Minnesota Autism/ASD Summit Committee State Plan 8 College of Education + Human Development, Department of Educational Psychology College of Liberal Arts, Department of Speech Language and Hearing Services