Services for Individuals with Autism Spectrum Disorder – Minnesota’s New Benefit

1. Services for Individuals with Autism Spectrum Disorder – Minnesota’s New Benefit Age and Disabilities Odyssey Conference June 17, 2013

2. What is Autism Spectrum Disorder? • Autism Spectrum Disorders (ASD) are defined as a set of complex disorders of brain development that appear in infancy and affect how children process information and respond to people and the world around them. • Autism appears to have its roots in very early brain development, however, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age.

3. What is Autism Spectrum Disorder • ASD is considered a “spectrum” disorder due to the range in symptoms from mild to severe and the variation from individual to individual. • ASD occurs across all racial, ethnic and socioeconomic groups. • ASD appears in boys five times more often than girlsaffecting nearly 1 in 54 boys compared with 1 in 252 girls.

4. What is ASD? • ASD can be associated with significant cognitive impairment, however some persons with ASD are extremely bright and highly verbal and may excel in highly defined areas of expertise such as visual skills, music, math, and art. • ASD is also associated with other conditions such as difficulties in motor coordination and attention, and physical health issues such as epilepsy, sleep, and gastrointestinal disturbances.

5. What is ASD? • It is this variation in range and manifestation of signs and symptoms from individual to individual that compounds the difficulty of screening and diagnosis and then in identifying appropriate treatment. adding to the difficulty of diagnosis.

6. Characteristic Features of ASD • Social interaction challenges: Interacting in a social manner and relating to others (core deficit of ASD) • Communication challenges: Communicating verbally, non-verbally and socially • Behavioral challenges: Responding to people, interests, and the world around them in a flexible and adaptive manner

7. Medical Diagnosis and Educational Identification of ASD • There are no medical tests for diagnosing autism. Both educational and medical assessments of ASD require professionals with specific training and expertise in ASD. • Both evaluations are based on a thorough parent/caregiver interview of medical and developmental history and a thorough observation of the quality of the individual's communications, social interactions, and of his or her activities and interests. • There are specific standardized tests that may be included by either the educational or medical professional but the determination is based on observational and reported data.

8. Medical vs. Educational • Educational Identification - ASD is a special education category that is defined as a specific set of challenges, with on-set in childhood, that adversely affect a pupil's functioning and result in the need for special education instruction and related services. • Medical Diagnosis – Similar processes and procedures are performed to diagnose ASD, leading to access to medically necessary therapies including speech, occupational therapy, physical therapy, or other therapies such as intensive interventions through CTSS.

9. CDC ASD Prevalence Data in U.S.

10. Prevalence of ASD in MN • Minnesota Department of Education reported 15,378 individuals between birth and 21 years of age. • Approximately 1 in 81 individuals have an ASD in MN ( MDE, 2011)

11. DHS ASD Data • 17,454 individuals with ASD in CY2010 • 58% were children under age 18 • Three-fifths receive at least one long-term service and support • Young children (under age 6) most likely to receive PCA • Adults more likely to receive HCBS waiver

12. Legislative History of ASD • Senate Task Force – 2008 • Legislative Task Force – 2009 and 2011 • Private insurance mandate efforts • What is different about this year?

13. Brief History of ASD Treatment • Behavioral Approaches – Applied Behavior Analysis (ABA), Lovaas, Pivotal Response Training (PRT) • Developmental Approaches – D.I.R Model, R.D.I. Model, Denver Model, P.L.A.Y. Project

14. The New ASD Benefit • Key Elements: • Multidisciplinary, diagnostic evaluation and treatment plan development • Individualized, culturally competent child and family-centered intervention • Rigorous independent progress monitoring • Coverage with evidence development: A “learn while doing” approach • On-going stakeholder input into development of the benefit

15. Coordination of Benefit with other Services • Children’s Therapeutic Services and Supports • Home and community based services • Waivers • PCA • Schools/Early Intervention

16. Next Steps • New Benefit Development: • Develop an internal and external core group of advisors • Coordinate with internal work group to ensure continuity of services across administrations • Consult with external clinical advisors from MN and nationally • Develop a stakeholder input process that addresses • Providers • Parents • Health Plans • Other State Agencies

17. Purpose of Advisor Work Groups • Define standards for best practice in screening, diagnosis, treatment, progress monitoring, and culturally responsive, individualized child treatment and parent education • Develop best practice in research and accountability in order to “learning while doing” and further the evidence base • Implement an effective stakeholder input process to ensure a broad base of community and agency support