Demographics of Kentucky

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1 State of the State: Kentucky An overview of services, resources and supports for children with autism spectrum disorders ACT EARLY SUMMIT Nashville, TN January 8-9, 2009

2 Parental Concerns Delays in early identification Lack of coordination in services Geographical disadvantages Lack of centralized source of information What is the best treatment?

3 Demographics of Kentucky Total Population of Kentucky Persons under 5 years old (6%) Persons below poverty (16.3%) 4,206, , ,971 FY 2008 Number of being served by First Steps 90% Developmental elopmental Delay 10% Established Risk Condition 12,918 11,626 1, Child Count Data Kentucky Department of Education Students (3-21) being served in the category of autism Persons under 3-5 years old identified in category of autism Persons under 3-5yearsoldidentified in category of development delay 2, , 005 Estimated number of Kentuckians on the autism spectrum 28,040 Estimated number persons under 5 years old 1,682

4 Kentucky Commission for Autism Spectrum Disorders The Kentucky Commission on Autism Spectrum Disorders was created by House Bill 296 in 2005 and given the charge to create a state plan for assessment, identification, professional training, standards, and education and treatment programs for individuals with ASDs. The appointed members included representatives from state agencies, legislators, parents of children and adults with ASDs, and community service providers. Copy of recommendations available at state information table

5 Kentucky Commission for Autism Spectrum Disorders Four subcommittees included: Identification/Intervention/ASD Registry Best practices/training i i of Services Providers Services/Transition Funding Sources

6 What is the Kentucky Partnership The Kentucky Partnership for Early Childhood Services is a multi-project consortium housed at the University of Kentucky Human Development Institute. The partnership's goal is to provide research, training and outreach to support and enhance quality early care and education. Services are provided through a variety of state and national grants and contracts.

7 Kentucky Partnership Services Kentucky Early Childhood Transition Project Training and TA to support implementation of interagency agreements and community plans for child find and coordination and alignment of services, prenatal to age 6 The Child Care Resource & Referral Network, Quality Enhancement Initiative & Training into Practice Project Training & TA to support high quality early care and education environments Kentucky Early Childhood Data System (KEDS) Web based data collection system to support state reporting of OSEP outcomes for Part C and 619, and child progress on the KY early childhood standards for all programs

8 Medical Providers in Kentucky Primary care providers have an important role in the early identification of ASD s The AAP has recommended routine screening for ASD s at18and24 and months of age Healthcare for children under 5 years of age in KY is provided by pediatricians, family practitioners and nurse practitioners

9 Medical Providers in KY (cont) Distribution of healthcare providers is unequal, with fewer practitioners available in rural areas of eastern, southeastern and western KY (map of distribution) Not all providers belong to KMA OR KYAAP organizations and alternative means of disseminating information may be necessary

10 Availability of Diagnostic Facilities Subspecialists sts involved in autism diagnosis s are currently available at University of Louisville, University of KY, Eastern KY University and Cincinnati Children s Hospital These centers are in urban areas and typically have long wait lists which may limit access Limited reimbursement for non physician diagnosticians and the time needed for comprehensive testing for ASD s are ongoing issues which should be addressed

11 Improving Awareness among Medical Providers Studies from indicated that only 8% of primary care providers reported routinely screening for ASD s This lack of consistent use of screening tools has led to delays in referring children for appropriate diagnostic evaluation and intervention Recommendations by the Governor's Autism Commission to mandate screenings were not approved by the KY legislature

12 Efforts to Improve Awareness among Medical Providers Current efforts to promote autism awareness among practitioners include: Physician training programs in Pediatrics and Family/Community Medicine Educational programs for physicians in practice through Grand Rounds and CME courses Annual statewide conferences (Autism Institute, KPA conference, etc.) These programs may need to be supplemented by statewide efforts to provide physicians with specific screening tools and other autism resources

13 Ways to Overcome Existing Barriers for Healthcare Providers Reaching out to Nurse practitioner community Disseminating AAP and CDC materials on autism awareness to practicing healthcare providers offices Providing screening tools and training on appropriate utilization Providing information on referral resources (medical, educational, therapeutic) Improving reimbursement for non-physician diagnosticians Increasing number of qualified subspecialists with expertise in autism in the state

14 The mission of the Kentucky Autism Training Center (KATC) is to enhance supports for persons with autism by providing information and technical assistance to families and service providers across Kentucky.

15 Training, Supports and Resources for Families and dprofessionals The KATC strives to create statewide supports and training activities for professionals and families who are affected by autism. The KATC does this by offering: School-Based Team Consultations Web-site Web-Based Directory Amanda L. King Resource Library Quarterly Electronic Newsletter Listserv Regional R i l Workshops Annual Autism Institute Graduate and Undergraduate Course Work Family Guide (in Development)

16

17 Kentucky Autism State Team Develop a Vision for Professional Development and Coaching: Sustainable and Local KDE Special Education Cooperatives Early Childhood Regional Training Centers KATC First Steps Vocational Rehabilitation Families Kentucky Council on Developmental Disabilities Institutes of Higher Education UK Human Development Center-State UCEDD

18 Kentucky selected to partner with the National Professional Development Center on Autism Spectrum Disorders FPG Child Development Institute at the University of North Carolina at Chapel Hill Waisman Center at the University of Wisconsin- Madison M.I.N.D. Institute at the University of California Davis Medical School to implement the two-year project.

19 The purposes of the two-year project Increase the number of highly qualified personnel (particularly teachers and practitioners) serving children and youth with ASD in Kentucky Establish a sustainable system of professional development in evidence-based practices in ASD Provide technical assistance support for early childhood practitioners, educational leaders, teachers and school-based personnel

20 The AtE Act Early Regional ls Summit itp Project will bring together key state leaders from the healthcare community, the early intervention and early childhood communities for the purpose p of enhancing relationships and collaborations among these key stakeholders and providing a forum to share information and insights on the opportunities, challenges, and barriers for families and children with Autism Spectrum Disorders (ASD) and related disabilities in the identification, assessment, diagnosis and intervention areas.

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