Developmental Disabilities Conference The California Legislative Blue Ribbon Commission on Autism 03/07/2008 1

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1 7th Annual Developmental Disabilities: An Update for Health Professionals March 7, 2008 The California Legislative Blue Ribbon Commission on Autism: An Opportunity to Achieve Real Change for Californians with Autism Spectrum Disorders By The Autism Epidemic: Prevalence of Autism ~ 1 in every 10,000 births 1993 ~ 1 in every 1,000 births 1995 ~ 1 in every 750 births 1998 ~ 1 in every 500 births PRESENTLY one in every 150 births One in every 94 male births Increase In Autism in California from Lou Vismara, M.D. Consultant, Sen. Don Perata Senate President Pro Tem Number of Persons The California Autism Spectrum Disorders: A Public Health Crisis National Statistics on ASD ASD now affects 1 in 150 children ASD now affects 1 in 94 boys A child is diagnosed once every 20 minutes There are over 24,000 new cases diagnosed annually ASD is more prevalent that juvenile diabetes, childhood cancer & pediatric AIDS combined. ASD is fastest growing serious developmental disability There are almost 2 million cases of ASD The economic impact of autism is over $90 billion annually 3 The California Autism Spectrum Disorders: A Public Health Crisis California Statistics on ASD Dept. of Developmental Services & Regional Centers Caseload increased 634% from 1987 to 2002 Currently there are almost 35,000 consumers with ASD 84% are under the age of 22 years Annual net increase of 3,200 cases of ASD ASD now represents almost two-thirds of all new cases Currently there are more cases of ASD than of Cerebral Palsy Regional Centers probably serve only about 20% of ASD School districts Almost 35,000 students with ASD in special education Most districts have doubled ASD students in just the past 4 years Proportion of students with ASD in special education has increased >400% in past 9years There has been >1000% increase in ASD students K-12 during past 12 years 4 03/07/2008 1

2 The California Legislation (Sen. Perata) enacted 2005; Unanimous & bipartisan support Autism Commission s ~ identify & close gaps: Early identification & intervention Education & continuous treatment The aging out of children Commission s Three Task Forces Identify existing problems & gaps Review potential strategies Provide specific recommendations Task Forces Reports (March 1, 2007) Statewide Townhall Meetings Final Report to Governor & Legislature (September 2007) Legislation extends Commission to Nov The California Factors & Considerations: Consumers, parents, & families as well as individuals working in the field must be involved The state should have a clear role and responsibility to address these issues The solutions should be clearly identified The solutions should be reasonable & feasible to implement. The solutions should have outcomes that can be monitored & measured The solutions should have the potential to effect broad systems change Web site: senweb03.senate.ca.gov 5 6 The Autism Commission s Report to the Governor & Legislature: An Opportunity to Achieve Real Change for Californians with Autism Spectrum Disorders Table of Contents 1. Building Models of Integrated, Comprehensive Services for Early Identification & Intervention 2. Ensuring Appropriate and Equitable Coverage for ASD by Private Health Plans & Insurers 3. The ASD Public Health Crisis: Improving Access to Services & Navigating Complex Systems of Care 4. Preparing Teachers & Other School-Based Personnel to Educate Children with ASD 5. Resolving Service Disputes Effectively & Equitably 6. Designing New Employment & Housing Strategies for Individuals with ASD 7. Increasing Awareness and Knowledge of ASD among Law Enforcement Officers & Other First Responders 8. Conclusions & Next Steps Review of the Commission s Report Chapter 1. Introduction ASD is a Public Health Crisis with Significant Challenges for California California Leads in Services for ASD California Leads in Science, Knowledge & Best Practices for ASD Despite Progress Significant Gaps Remain Commission Charge to Examine Gaps in Programs, Services, & Funding for ASD Addressing the Gaps in the Context of Fiscal Constraints Commission Membership & Process web site: senweb03.senate.ca.gov 7 Organization of this Report 8 03/07/2008 2

3 Chapter 2. Building Models of Integrated, Comprehensive Services for Early Identification & Intervention Many children with ASD are identified late in childhood or missed altogether Many children diagnosed with ASD do not receive timely & appropriate intensive interventions. Existing systems of care often do not collaborate The medical system is overwhelmed, under-funded, and ill prepared & often lacks linkages to other systems of care Families often face a crisis when children with ASD reach age three and transition regional centers to school districts Ensure the early identification and access to seamless systems of effective intervention for children with ASD from birth to kindergarten. 9 Chapter 2 Continued: Building Models of Integrated, Comprehensive Services for Early Identification & Intervention 1. Establish a demonstration project at multiple sites: a. Expand early identification programs (focus on socio-economically distressed & rural areas) b. Ensure access to intervention c. Improve communication and sharing of information d. Provide supports to families and caregivers e. Improve communication between the medical home and families. f. Expand resources & training for health care professionals g. Provide a seamless system for service delivery between regional centers and school districts 2. Enact state legislation to expand developmental screening, including for ASD, for children from birth to five years of age 10 Chapter 3: Ensuring Appropriate and Equitable Coverage for ASD by Private Health Plans & Insurers Chapter 3 continued: Ensuring Appropriate & Equitable Coverage for ASD by Private Health Plans & Insurers Coverage of health care, behavioral, and psychotherapeutic services for ASD is limited, inconsistent or excluded altogether The roles and responsibilities of health plans and insurers for ASD services are not well defined Frequently there is lack of consensus about the medical necessity of services for individuals with ASD When health plans and insurers contract ( carve out ) behavioral health services, there is often fragmentation and/or denial of services, leaving families with lost time and no services Health plans and insurers do not consistently provide access to professionals with adequate training and expertise in ASD Ensure appropriate and equitable coverage by private health plans and insurers for the diagnosis and medically The state of California should adopt policies and practices to ensure the following: a. That all health plans and insurers treat ASD as a brain-based based & medical disorder b. That all health plans and insurers provide a full range of services for ASD c. That all health plans and insurers may not use the diagnosis of ASD as an exclusionary clause 2. The state of California should establish an Autism Professional Advisory Council for the purpose of adopting evidence-based best practices guidelines for the evaluation & treatment of ASD 3. Once these guidelines are adopted, California should adopt policies and procedures to ensure that all health plans and insurers comply with those guidelines 12 03/07/2008 3

4 Chapter 4. The ASD Public Health Crisis: Improving Access to Services and Navigating Complex Systems of Care ASD is a public health problem, yet the state lacks a comprehensive public health initiative and infrastructure Many Californians are not adequately informed about ASD Individuals with ASD and their families have difficulty in accessing & navigating programs and services Programs and services that serve individuals with ASD typically lack appropriate data management and information sharing systems Families in underserved populations face tremendous challenges in accessing services Provide all Californians with information about ASD so they can better understand the need for early detection and treatment and how to obtain programs and services. In addition, establish a public health information system and infrastructure to improve access to and navigation of programs and services for ASD Chapter 4 continued: The ASD Public Health Crisis: Improving Access to Services & Navigating Complex Systems of Care 1. Require the state of California to establish an ASD Public Health Initiative in order to promote greater public awareness and knowledge of ASD 2. Require the California Department of Public Health to establish a statewide system, infrastructure, and Office of ASD to assist consumers in accessing and navigating programs and services for ASD 3. Require the California Department of Public Health to establish a statewide voluntary registry for individuals with ASD 4. The state of California should fund training, technical assistance, and other support to community-based resource centers so they can inform, train, assist, and empower families, especially those in underserved communities Chapter 5. Preparing Teachers and Other School-Based Personnel to Educate Children with ASD There is a compelling need to increase the number of well trained special education and regular education teachers, speech therapists, occupational therapists, counselors, and other specialists Current practices must be reviewed to ensure that teacher training and preparation are appropriate and applicable There are an insufficient number of well-trained paraprofessionals and school aides to assist teachers Teachers report that they need more resources and supports School administrators and principals require additional training and preparation Teachers need expanded opportunities for pre-service and in-service training Ensure that there are an adequate number of appropriately trained school personnel to provide educational services to meet the special needs of children with ASD 15 Chapter 5 continued: Preparing Teachers & Other School-Based Personnel to Educate Children with ASD 1. Establish an alternative credentialing program with specialized training on ASD for prospective special education teachers a. Increase the number of well trained and qualified teachers b. Prepare teachers to educate children with ASD 2. Direct the California Department of Education to establish an ASD Multidisciplinary Educational Training Team Program: a. Establish the professional competencies, resources, curricula b. Establish strategies, trainings, and other services for school-based personnel c. Promote collaboration in the sharing of information between local education agencies and other educational systems & resources 3. Establish a model program to provide specialized training and career-ladder opportunities for teacher aides and other paraprofessionals 16 03/07/2008 4

5 Chapter 6. Resolving Service Disputes Effectively and Equitably Consumers and their families may disagree with local education agencies and/or regional centers and other systems of care about the type and quantity of services The current system that addresses conflict resolution between consumers and their families and local education agencies and/or regional centers is variable in its effectiveness across the state Some disputes that are appealed to the state for resolution can be very costly, frustrating, and time consuming, and create delays in the delivery of services. Serious disputes can also divert resources from services The resolutions of some disputes are unsatisfactory & perceived to be inequitable to consumers and their families There is inadequate information about the range of disputes that are resolved at the state and local levels There is inadequate information about the range of possible barriers that may preclude consumers and their families from pursuing an appropriate and effective dispute resolution process Ensure that consistent and effective standards and practices are used by local education agencies and regional centers to resolve service disputes in a timely, equitable, and cost- effective manner Chapter 6 continued: Resolving Service Disputes Effectively & Equitably 1. Expand the development and broad implementation of effective models for dispute resolution to empower families at the negotiation table with local education agencies 2. Direct the state of California to provide a comprehensive and independent review of the process for resolving disputes at the state and local levels 3. Direct DDS & CDE to collect information from regional centers and local education agencies about their legal costs related to dispute resolution and litigation involving persons with ASD Chapter 7. Designing New Employment & Housing Strategies for Individuals with ASD Within the next few years a veritable tsunami of young people with ASD will enter adulthood and transition into the community There are very few programs designed to meet the needs of these individuals in the areas of specialized employment and housing There is a lack of effective models that address the career technical educational (vocational) needs of individuals with ASD who require intensive supports and assistance Although new initiatives have begun to expand self-directed service delivery models, there are major gaps within the private and public employment sector There are few, if any, specialized services designed to meet the needs of higher functioning adolescents and adults with ASD to enable them to develop vocational skills and to assist them in finding productive career pathways Develop and implement models that effectively address the educational, housing, transportation, social-recreational, and employment needs of adolescents and adults with ASD 19 Chapter 7 continued: Designing New Employment and Housing Strategies for Individuals with ASD : 1. Direct the California Community Colleges, in collaboration with other appropriate public and non-public partners, to expand programs designed for career training of people with ASD. 2. Direct the California Department of Education, in collaboration with other appropriate public and non-public partners, to establish a demonstration project at multiple sites that will serve as a career technical educational pathway, starting in middle school, for students with ASD who require intensive supports and assistance. 3. Endorse the efforts of the State Council on Developmental Disabilities in implementing the recommendations of Senate Bill 1270 (Chesbro; 2006) by promoting innovative career training programs for persons with ASD 4. Enact a state housing financing program designed to add financial support and assistance to local housing initiatives that bring together families, regional centers, and other community organizations for the development of specialized housing for the ASD population. 5. Create a model for housing and support for persons with ASD that treats the individual with respect and dignity, and provides a range of opportunities for employment and leisure activities /07/2008 5

6 Chapter 8. Increasing Awareness and Knowledge of ASD among Law Enforcement Officers & Other First Responders There are reports of devastating incidents involving persons with ASD Law enforcement & other first responders often lack fundamental understanding and training related to ASD The ASD population growing into adulthood has a need to know what to do when victimized Courts lack an awareness of persons with ASD in terms of their accessing the judicial system in all capacities Assure full integration of persons with ASD into community life in California by preparing and educating first responders, the judicial system, and the persons themselves on this aspect of their functioning in community life 1. Direct the Peace Officer Standards and Training Commission to develop an ASD training module (i.e., DVD-based technology) and make it widely available to peace officers and first responders Chapter 9. Conclusions and Future Considerations Comprehensive planning across diverse constituents & communities Economic factors & fiscal analysis Consider key "can do now" recommendations & programs that could be implemented even with a restrictive budget climate such as: Early Identification, Screening, And Referral Coordination between various state & local agencies Surplus State Property And Re-investment Policy Public Health Advocacy, Education And Research Professional and paraprofessional development Role of colleges and universities Role of Medi-Cal Program & federally funded programs such as EPSDT Importance of long term quality assurances & outcome measures 2. Direct the Department of Developmental Services and the Judicial Council to initiate training for persons with ASD, as well as for allied public agencies, in accessing and participating in the judicial system Current Autism Legislation: Session Health Insurance Coverage of ASD SB 1563 (Sen. Perata) Early Identification of ASD SB 527 (Sen. Steinberg) Expansion of Housing for Individuals with ASD SB 1175 (Sen. Steinberg) Police Officer Training on ASD SB 1531 (Sen. Correa) Pilot on Transitional Services for Early ASD Treatment SB 1475 (Sen. Torlakson) Establish State Clearinghouse for the education of students with ASD AB 1872 (Asm. Coto) Final Thoughts Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has! ~ Margaret Mead The End Expanding Credentials for Special Education Teachers to Educate Students with ASD AB 2302 (Asm. Bass) /07/2008 6