Congressional Briefing on Autism

Transcription

1 Congressional Briefing on Autism Presented by the National Association of Private Special Education Centers November 10, 2011

2 OUR GOAL FOR TODAY IS FOR YOU TO KNOW: 1. WHAT AUTISM IS 2. HOW TO IDENTIFY THE APPROPRIATE TREATMENTS FOR AUTISM 3. WHICH FEDERAL ENTITLEMENTS APPLY TO CHILDREN AND ADULTS WITH AUTISM 4. WHAT ROLE PRIVATE SPECIAL EDUCATION PLAYS IN EDUCATING CHILDREN WITH AUTISM 5. HOW NAPSEC SCHOOLS RESPOND TO THE NEEDS OF CHILDREN AND ADULTS WITH AUTISM

3 AUTISM COMMUNITY 1. ORGANIZATIONS THAT RAISE FUNDS FOR AWARENESS AND RESEARCH (AUTISM SPEAKS) 2. ORGANIZATIONS THAT PROMOTE SREVICE PROVISION (AUTISM SOCIETY) 3. ORGANIZATION THAT PROVIDE DIRECT SERVICES IE EDUCATION, RESIDENTIAL, VOCATIONAL, EMPLOYMENT, IN-HOME SUPPORT

4 MODERATOR CHRIS TABAKIN DIRECTOR OF QUALITY MANAGEMENT AND ADVOCACY MELMARK BERWYN, PENNYSYLVANIA DIRECT SERVICE PROVIDER OF CHILDREN WITH AUTISM

5 PRESENTERS DR. TOM MCCOOL PRESIDENT/CEO EDEN AUTISM SERVICES PRINCETON, NEW JERSEY DIRECT SERVICE PROVIDER FOR CHILDREN AND ADULTS WITH AUTISM

6 PRESENTERS DR. ROBIN CHURCH SENIOR VICE PRESIDENT FOR EDUCATION KENNEDY KRIEGER INSTITUTE BALTIMORE, MARYLAND DIRECT SERVICE PROVIDER OF CHILDREN WITH AUTISM

7 PRESENTERS TOM DEMPSEY FOUNDER AND DIRECTOR SOUTH CAMPUS PALATINE, ILLINOIS DIRECT SERVICE PROVIDER FOR CHILDREN WITH AUTISM

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9 AUTISM 1. SPECTRUM DISORDER 2. OCCURS BECAUSE OF NON- NORMAL CELLULAR GROWTH IN THE HUMAN BRAIN, PARTICULARLY IN THOSE AREAS THAT IMPACT SPEECH; NON- VERBAL COMMUNICATIONS; BEHAVIOR; SENSITIVITY TO LIGHT AND SOUND

10 AUTISM FACTS COMPILED BY AUTISM SPEAKS 1. AFFECTS 1 IN 100 CHIILDREN 2. MORE CHILDREN WILL BE DIAGNOSED WITH AUTISM THIS YEAR THAN WITH AIDS, DIABETES, AND CANCER COMBINED 3. FASTEST GROWING SERIOIUS DEVELOPMENTAL DISABILITY IN THE US 4. COSTS THE NATION OVER $35BILLION ANNUALLY (WITH SIGNIFICANT INCREASES OVER THE NEXT DECADE

11 AUTISM FACTS COMPILED BY AUTISM SPEAKS 5. RECEIVES LESS THAN 5% OF THE RESEARCH FUNDING OF MANY LESS PREVALENT CHILDHOOD DISEASES. 6. BOYS ARE FOUR TIMES MORE LIKELY THAN GIRLS TO HAVE AUTISM 7. ONE PERCENT OF THE WORLD S POPULATION IS ESTIMATED TO BE AFFECTED BY AUTISM (67 MILLION PEOPLE) 8. THERE IS NO MEDICAL DETECTION OR CURE FOR AUTISM; BUT EARLY DIAGNOSIS AND INTERVENTION CAN IMPROVE OUTCOMES

12 AUTISM TREATMENTS 1. NUMBER OF TREATMENT OPTIONS HAVE INCREASED AS FAMILIES AND EDUCATORS ATTEMPT TO DEAL WITH EXPANDED NUMBERS. 2. FAMILIES ARE DESPERATE AND WILL TRY ANYTHING AND EVERYTHING THAT HAS A CHANCE TO HELP

13 AUTISM TREATMENTS 1. MAINSTREAM PUBLICATIONS PROMOTE TREATMENT OPTIONS THAT FEED INTO THE HOPE FAMILIES HAVE FOR FINDING A CURE 2. THE BEST WAY TO DETERMINE IF A PARTICULAR TREATMENT IS EFFECTIVE IS TO LOOK AT RESEARCH

14 NATIONAL STANDARDS PROJECT 1. CONDUCTED BY THE NATIONAL AUTISM CENTER 2. INTENDED TO PROVIDE PARENTS, CAREGIVERS, EDUCATORS, AND SERVICE PROVIDERS WHO MUST MAKE COMPLICATED DECISIONS ABOUT TREATMENT SELECTION

15 PURPOSE OF NSP 1. PROVIDE STRENGTH OF EVIDENCE SUPPORTING EDUCATIONAL AND BEHAVIORAL TREATMENTS 2. DESCRIBE THE AGE, DIAGOSIS, AND SKILLS/BEHAVIORS TARGETED FOR IMPROVEMENT ASSOCIATED WITH TREATMENT OPTIONS 3. IDENTIFY THE LIMITATIONS OF THE CURRENT BODY OF RESEARECH ON AUTISM TREATMENT 4. OFFER RECOMMENDATIONS FOR ENGAGING IN EVIDENCE BASED PRACTICE FOR ASD

16 FINANCIAL CONSIDERATIONS 1. WITH THE GROWING NUMBERS OF CHILDREN DIAGNOSED WITH ASD, FAMILIES ARE FINANCIALLY OVERBURDENED 2. STATE AND FEDERAL FUNDING FOR TREATMENT IS OFTEN LIMITED 3. SOCIETAL COST ESTIMATES TO SUPPORT EACH INDIVIDUAL WITH AUTISM IS ESTIMATED AT $3.2M 4. EFFECTIVE TREATMENT CAN REDUCE THESE LIFETIME COSTS BY 65%. 5. IN LIGHT OF THESE FACTS, FAMILIES, SCHOOLS AND MEDICAL/SOCIAL SERVICE SYSTEMS ARE CHOOSING TO INVEST THEIR LIMITED RESOURCES ON TREATMENTS THAT HAVE ALREADY BEEN SCIENTIFICALLY ESTABLISHED AS EFFECTIVE

17 NSP PROJECT PURPOSE 1. IDENTIFY THE LEVEL OF RESEARCH SUPPORT CURRENTLY AVAILABLE FOR EDUCATIONAL AND BEHAVIORAL INTERVENTIONS USED WITH INDIVIDUALS UNDER AGE HELP PARENTS, CAREGIVERS, EDUCATORS, SERVICE PROVIDERS UNDERSTAND HOW TO INTEGRATE CRITICAL INFORMATION IN MAKING TREATMENT DECISIONS 3. IDENTIFY LIMITATIONS OF THE EXISTING TREATMENT RESEARCH INVOLVING INDIVIDUALS WITH ASD, EVEN WHEN A TREATMENT HAS BEEN ESTABLISHED AS EFFECTIVE

18 TREATMENT EFFECTIVE RATINGS 1. BENEFICIAL WHEN THERE IS SUFFICIENT EVIDENCE THAT WE CAN BE CONFIDENT FAVORABLE OUTCOMES RESULTED FROM THE TREATMENT 2. UNKNOWN/EMERGING WHEN THERE IS NOT ENOUGH INFORMATION TO ALLOW US TO CONFIDENTLY DETERMINE THE TREATMENT EFFECTS 3. INNEFFECTIVE WHEN THERE IS SUFFICIENT EVIDENCE THAT WE CAN BE CONFIDENT FAVORABLE OUTCOMES DID NOT RESULT FROM THE TREATMENT 4. ADVERSE WHEN THERE IS SUFFICIENT EVIDENCE THAT THE TREATMENT WAS ASSOCIATED WITH HARMFUL EFFECTS

19 ESTABLISHED TREATMENTS 1. ANTECEDENT PACKAGE 2. BEHAVIORAL PACKAGE 3. COMPREHENSIVE BEHAVIORAL TREATMENT FOR YOUNG CHILDREN 4. JOINT ATTENTION INTERVENTION 5. MODELING

20 ESTABLISHED TREATMENTS 6. NATURALISTIC TEACHING STRATEGIES 7. PEER TRAINING PACKAGE 8. PIVOTAL RESPONSE TREATMENT 9. SCHEDULES 10. SELF-MANAGEMENT 11. STORY-BASED INTERVENTIAL PACKAGE

21 EMERGING TREATMENTS 1. AUGMENTATIVE AND ALTERNATIVE COMMUNICATIONS DEVICES 2. COGNITIVE BEHAVIORAL INTERVENTION PACKAGE 3. DEVELOPMENTAL RELATIONSHIP-BASED TREATMENT 4. EXERCISE 5. EXPOSURE PACKAGE

22 EMERGING TREATMENTS 6. IMITATION-BASED INTERACTION 7. INITIATION TRAINING 8. LANGUAGE TRAINING PRODUCTION 9. LANGUAGE TRAINING PRODUCTION AND UNDERSTANDING 10. MASSAGE/TOUCH THERAPY

23 EMERGING TREATMENTS 11. MULTI-COMPONENT PACKAGE 12. MUSIC THERAPY 13. PEER-MEDIATED INSTRUCTIONAL ARRANGEMENT 14. PICTURE EXCHANGE COMMUNICATIONS 15. REDUCTIVE PACKAGE 16. SCRIPTING

24 EMERGING TREATMENTS 17. SIGN INSTRUCTION 18. SOCIAL COMMUNICATIONS INTERVENTION 19. SOCIAL SKILLS PACKAGE 20. STRUCTURED TEACHING 21. TECHNOLOGY-BASED TREATMENT 22. THEORY OF MIND TRAINING

25 UNESTABLISHED TREATMENTS 1. ACADEMIC INTERVENTIONS 2. AUDITORY INTEGRATION TRAINING 3. FACILITATED COMMUNICATIONS 4. GLUTEN AND CASEIN FREE DIETS 5. SENSORY INTEGRATIVE PACKAGE 6. INEFFECTIVE/HARMFUL TREATMENTS

26 Building the Capacity of Public Schools to Meet the Needs of Students with Autism: A Public/Private Partnership Robin Church, Ed.D., Sr. Vice President, Special Education November 10, 2011

27 High School (Bennett Building) L.E.A.P. Program Fairmount Campus Montgomery County Campus Kennedy Krieger School is part of the Kennedy Krieger Institute, a nationally recognized Center for Excellence in Developmental Disabilities Robin P. Church, Ed.D Sr. VP Education

28 100% 90% Demographic Shift in Autism Students (HS vs. FMT) The number of students with autism in nonpublic schools has increased significantly 80% 70% 60% 50% 40% Autism Non-autism 30% 20% 10% 0% High School Fairmount

29 IDEA Requirements According to IDEA, each public agency shall ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services. Nonpublic Schools are part of that continuum

30 The Continuum of Options The recognition that regular class placement may not be appropriate for every disabled student is reflected in the requirement that school districts make available a range of placement options, known as a continuum of alternative placements, to meet the unique educational needs of students with disabilities.

31 Building Capacity in Public Schools We believe that the future of non-public special education is not in the expansion of our home based campus programs but in our ability to bring our expertise into the public schools

32 Examples of Current and Future Collaborations Public/Private Partnerships: opportunities to provide evidence based, quality services in a public school setting On-site Consultation: working at classroom and school-wide level to improve inclusive practices, instruction, and behavior management Web-based Consultation: based on technology used in hospitals, remote observation with feedback for affordable, individualized classroom support University Collaboration: Series of classes/trainings designed to provide opportunities for continuing education/ceu accumulation for certification and internship sites Model Classroom Project: partnership with Kennedy Krieger School and ACCEL School in to improve the effectiveness of teachers working with students on the autism spectrum

33 Model Classroom Program Enhancing Teacher Effectiveness: ACCEL & Kennedy Krieger: A Collaborative Partnership to Build Better Teachers

34 National Focus on Teacher Evaluation No Child Left Behind and the National Governors Association (NGA) are targeting teacher evaluation policy as a way to improve student learning The NGA identified six policy goals for improving student learning: o define teacher quality o focus evaluation policy on improving teaching practices o incorporate student learning into teacher evaluation o create professional accountability through developing career ladders o train evaluators in pre-service programs o broaden participation in evaluation designs

35 Core Concepts Teacher effectiveness is a key component to positive student outcomes Teacher effectiveness must be defined across a range of variables Teacher supervision, evaluation, and continuous quality improvement are essential to ensuring teacher effectiveness

36 Model Classroom Program A direct classroom and interview based assessment and intervention that acknowledges the complexities of instructiona settings and teaching methodologies Integrates evidence-based components: Applied Behavior Analysis, Structured Teaching (TEACCH), Effective Instruction, Classroom Management, Curriculum Planning

37 Components of the Model Classroom Program Environmental Structure and Room Set-Up Student Schedule Development & Use Curriculum & Developmentally Appropriate Activities Teaming & Making Materials Effective Teaching Behaviors Classroom Management Data Collection & Use

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39 Evaluating the Relationship Between Teacher's Score on MCP Instrument and Aggregate Rate of Destructive Behavior

40 Evaluating the Relationship Between Teacher's Score on MCP Instrument and Aggregate Rate of Destructive Behavior

41 What Teachers Have Said I feel like I got a life time of professional development in six months. Without this type of intensive mentoring and guidance, I could never have made these important changes in my classroom. This has been the most meaningful training I have ever received

42 SOUTH CAMPUS ~ Day School ~ Diagnostic Program ~ Extended Day Program ~ Autism Program ~ Public Private Partnership ~ Public School Evaluations ~ Community Training

43 TRANSITION SERVICES ~ Begins at 14 ~ Help each individual become as independent and successful as possible ~ Person centered transition planning ~ Vocational planning ~ College and Trade Schools ~ Self Advocacy ~ Financial Planning

44 COMMUNITY PARTNESRSHIPS ~ Career Week ~ In school vocational opportunities ~ Job Shadowing ~ Supported Employment and Job Coaching ~ Competitive Employment ~ Community College Transitions

45 ADULT SERVICES ~ No Federal Mandate ~ Medicaid Waiver ~ Uneven state funding ~ Residential Options ~ Supplemental Security Income ~ Department of Rehabilitative Services ~ Health and Insurance Issues

46 FAMILY ADVOCACY ~ Independent Evaluations ~ Solid Transition Planning ~ Interagency Agreements ~ Long term financial planning ~ Guardianship ~ Parent Support ~ Sibling issues

47 DIAGNOSTIC PROGRAM ~ South Campus public/private partnership ~ Immediate crisis placement ~ Comprehensive Case Study evaluation ~ Interagency collaboration

48 What is a NAPSEC School ~ How we are funded ~ Federal and State Mandates ~ Compliance with state and Federal Law ~ Procedural safeguards ~ Effectiveness and outcomes ~ Cost benefit analysis

49 NAPSEC ~Privately operated, publically regulated ~ Emphasis on public private partnerships ~ High degree of cost effectiveness ~ Can expand and contract to meet needs ~ Serve the entire range of severe disabilities

50 The Continuum of Placement Options ~ Each point on the continuum supports and enhances the other ~ NAPSEC schools are devoted to timely movement on the continuum ~ NAPSEC schools are innovators in progressive options

51 FREE APPROPRIATE PUBLICALLY FUNDED EDUCATION ~ Individual Educational Program ~ Appropriate to unique educational needs ~ The Least Restrictive Environment ~ Decisions Made on an Individual Basis

52 THE ROLE OF PRIVATE EDUCATION ~ Advocacy and Policy Development ~ Training and Program Enhancement ~ Service Promotion