Department of Education 255 Capitol Street NE Salem, OR Phone: (503) Fax: (503)

Transcription

1 Department of Education 255 Capitol Street NE Salem, OR Phone: (503) Fax: (503) July 1, 2000

2 TABLE OF CONTENTS Executive Summary... 1 Overview... 4 Recommendations... 6 APPENDIX A Oregon Law 1999 Chapter APPENDIX B Caring for Oregon s Children with Autism Spectrum Disorder Task Force Member APPENDIX C History of Regional Services APPENDIX D Oregon: Primary Disability Autism APPENDIX E Regional Autism Services Enrollment and Funding APPENDIX F Regional Programs for Low Incidence Disabilities APPENDIX G Topics Related to the Autism Task Force Actions APPENDIX H Cost Benefit APPENDIX I Autism Outcome Study APPENDIX J Autism Cases in Oregon APPENDIX K Resources APPENDIX L Oregon Autism Spectrum Network Chart

3 Executive Summary: During the 1999 Legislative session the Oregon Legislature passed legislation (See Appendix A) to establish a task force to address issues surrounding services for children with Autism Spectrum Disorder (ASD). The Caring for Oregon s Children with Autism Spectrum Disorder Autism Task Force was directed to: Review the Department of Education Autism Implementation Plan and other relevant information. Further, the Task Force was directed to make legislative recommendations regarding the development and implementation of a continuum of educational services for students with Autism Spectrum Disorder, including but not limited to a state residential school for students with Autism. The recommendations are to include, but are not limited to: Potential funding sources; Selected site or sites; Scope of services provided, including consideration of age and severity of disability; and, Existing or proposed curricula. The Autism Task Force held its first meeting on February 18, The Autism Task Force held a total of six full day meetings. During the various meetings, the Autism Task Force received documents concerning autism services from a number of states, and heard presentations about both educational and residential services for children with Autism Spectrum Disorder. At each meeting the public was given an opportunity to express their issues and ideas concerning children with ASD. The Autism Task Force also spent an additional half-day hearing a report from the Developmental Disabilities Council and visiting both the Oregon School for the Blind and the Oregon School for the Deaf. The Autism Task Force used the information shared, the resources, and their own valuable experiences to determine desired outcomes, identify barriers to achieving the outcomes, and to craft recommendations to address the outcomes while overcoming the barriers. As a result of the efforts of the Autism Task Force, the following pages detail recommendations to enhance the success of every child with Autism Spectrum Disorder in Oregon. The Autism Task Force recognizes that children with Autism Spectrum Disorder (ASD) encompass a diverse population. There is no single model program that can be described as the most appropriate option for all children with ASD. Individuals, families, service providers, and educators need a full range of choice in terms of educational options to meet the diverse needs. The child is the center of the focus of any decision, interaction, instruction, or intervention. 1

4 The following outcomes are essential to the provision of educational services for students with Autism Spectrum Disorder: 1) Earliest Diagnosis and Intensive Intervention 2) Better Educational Outcomes 3) Outcomes Result in Participation to Greatest Extent Possible in Life 4) Individualized Programs 5) Comprehensive, Appropriate Programs Available 6) Transition and a Continuum of Services Available 7) Funding Sufficient to Meet Needs Recommendations: To address the outcomes, the Autism Task Force makes the following recommendations: 1) Develop and implement a three level system of service delivery and support for the continuous improvement of services to students with Autism Spectrum Disorder (ASD); 2) Improve services to students with ASD, including a system of resource and training centers; 3) Provide appropriate funding for Autism Spectrum Disorder services and monitor the use of the funding; 4) Develop and pass long-term legislation to enable and support improved services to students with ASD; 5) Enhance opportunities for parents and others concerned to design and implement services for individuals with ASD; 6) Train and support service providers and families to work with students with ASD; and, 7) Recruit and retain a supply of well-trained service providers. The Autism Task Force believes it is critical that changes in the continuum of educational services being offered, changes in residential services, and funding be made to implement the recommended outcomes. The changes focus on: Continuum of Educational Services: The three level system will include: A. The Oregon Autism Spectrum Development Center (ASDC) The role of the ASDC will be to conduct and review research, disseminate information, and evaluate and develop programs for improved effectiveness. B. Regional Autism Model Centers (RAMC) These centers will provide intensive training and model educational sites. C. Early Intervention/Early Childhood Special Education (EI/ECSE) and Local Educational Agencies (LEAs), Regional Autism Services These agencies are directly responsible for the day-to-day instruction of students with ASD. 2

5 Residential Services: The Autism Task Force recognizes the long-standing difficulty of operating two separate systems to provide the educational and residential support needed for individuals with ASD and their families. In order to provide comprehensive and cooperative educational and residential services, a clearly defined mechanism must be mandated to ensure that the Mental Health Developmental Disabilities Services Division (MHDD) and Oregon Department of Education (ODE) work together. To accomplish this mandate, all children determined eligible for educational services with Autism Spectrum Disorder should become eligible for MHDD services. Residential services that are focused on the needs of the child within the family context and environment are recommended. The services must offer a combination of training, resources, and family support activities from Education and Developmental Disabilities resources and agencies. The ASDC will take the lead in the design of an intensive residential services training plan and assist in setting up model sites for the training. Funding: In order to implement the recommendations of the Autism Task Force, in the relentless pursuit of success for each child with ASD, the Oregon Legislature shall provide separate and sufficient funding to staff all components of the recommended system so they can fulfill their mission. 3

6 Caring for Oregon s Children with Autism Spectrum Disorder Task Force Overview During the 1999 Legislative session the Oregon Legislature passed legislation (See Appendix A) to establish a task force to address issues surrounding services for children with Autism Spectrum Disorder (ASD). The Caring for Oregon s Children with Autism Spectrum Disorder Autism Task Force was directed to: Review the Department of Education Autism Implementation Plan and other relevant information. Further, the Task Force was directed to make legislative recommendations regarding the development and implementation of a continuum of educational services for students with Autism Spectrum Disorder, including but not limited to a state residential school for students with Autism. The recommendations are to include, but are not limited to: Potential funding sources; Selected site or sites; Scope of services provided, including consideration of age and severity of disability; and, Existing or proposed curricula. The task force was directed to be composed of the following membership appointed by the governor: Four parents of students with Autism; A member of the governing body of a school district; A representative of the Department of Education; A representative of an education service district; A special education director of a school district; and, A representative of a regional Autism program. The Oregon Legislature appointed one member of the Legislative Assembly to serve on the Task Force. The Governor s Office developed an Autism Task Force that geographically represented the state, represented an age range of children with Autism Spectrum Disorder, and represented both urban and rural issues. The members included Stan Ash, Francis Charbonnier, Kathy Emerson, Kirby Erickson, Jim Hill, Steve Johnson, Christine Moore, 4

7 Rick Potter, Therese Steward, and Mickey Upson. See Appendix B for complete details of the membership. The Oregon Department of Education secured staff to support the work of the Autism Task Force. The staff included Penny Reed, of Wisconsin, who was the Autism Task Force facilitator. She was experienced in both autism and in facilitation of groups. She provided a process and guidance for the group to develop recommendations. Marilyn Gense, of the Oregon Department, served as professional staff. She was responsible for overview presentations, information, resources, research, and the written report. Lynda Beck, of the Oregon Department of Education, served as support staff for the Autism Task Force. The Oregon Department of Education provided funds for the operation of the Caring for Oregon s Children Autism Spectrum Disorder Task Force. The Autism Task Force held its first meeting on February 18, The Autism Task Force held a total of six full day meetings. During the various meetings, the Autism Task Force received documents concerning autism services from a number of states and, heard presentations about both educational and residential services for children with Autism Spectrum Disorder (ASD). At each meeting, the public was given an opportunity to express their issues and ideas concerning children with ASD. The Autism Task Force spent an additional half-day hearing a report from the Developmental Disabilities Council and visiting both the Oregon School for the Blind and the Oregon School for the Deaf. The Autism Task Force used the information shared, the resources, and their own valuable experiences to determine desired outcomes, identify barriers to achieving the outcomes, and to craft recommendations to address the outcomes while overcoming the barriers. As a result of the efforts of the Caring for Oregon s Children Autism Spectrum Disorder Task Force, the following pages detail recommendations to enhance the success of every child with Autism Spectrum Disorder in Oregon. 5

8 Task Force Recommendations Through the relentless pursuit of success for each child, the Autism Spectrum Disorder Task Force has prepared the following recommendations. The recommendations will be described in detail as they relate to the appropriate requirements of Oregon Law 1999 Chapter Oregon Law 1999 Chapter 1046 Part 1: The task force shall review the Oregon Department of Education Autism Spectrum Disorder Implementation Plan and other relevant information and make legislative recommendations regarding the development and implementation of a continuum of educational services for students with Autism Spectrum Disorder, including but not limited to a state residential school for students with Autism Spectrum Disorder. Recommendations: Educational services, as used in this document, refers to special education and related services, at no cost to the parents, to meet the unique needs of a child with Autism Spectrum Disorder, including instruction conducted in the classroom, in the home, in hospitals, and in other settings. (CRF ) The task force recognizes that children with Autism Spectrum Disorder encompass a diverse population. Although they share a common eligibility for special education, each child possesses a variety of unique strengths, challenges, and learning characteristics. Each child s life is influenced by factors associated with personal, environmental, and social-familial contexts. The importance of individualization is vital to the development of instruction and support programs. There is no single model program that can be described as the most appropriate option for all children. ASD has an array of symptoms and can manifest itself in many different ways. These observations lead to the conclusion that individuals, families, service providers, and educators need a full range of choice of effective educational options to meet the diverse needs. The child is the center of the focus for any interaction, instruction, or intervention. The Autism Task Force proposes the following measures to broaden services in Oregon for children with Autism Spectrum Disorder. The following outcomes are essential to the provision of educational services for students with Autism Spectrum Disorder: A. Earliest Diagnosis and Intensive Intervention B. Better Educational Outcomes for Students with Autism Spectrum Disorder Through Collaboration and Trust Among all Those Concerned C. Outcomes Resulting in Participation to Greatest Extent Possible in Life D. Individualized Programs E. Comprehensive, Appropriate Programs Available 6

9 F. Transition and Continuum of Services Available G. Funding Sufficient to Meet Needs The following have been identified as barriers that may prohibit the achievement of successful outcomes: A. Lack of adequate funding to provide appropriate services - caseload size for EI/ECSE providers, special education teachers, and particularly regional autism consultants, are too large to be effective. B. Adversarial attitudes difficult interactions between districts and parents, lack of flexibility to design individual programs, and lack of trust in the system. C. Training obstacles lack of pre-service preparation, competing burden of training teachers in all needed areas, lack of sufficient in-service training for teachers and educational assistants, lack of opportunities for training and planning for families and staff together, delay in referral by physicians, no certification in autism, and no measurement of competence. D. State legislation obstacles regional service delivery model of consultation is outdated, direct service model is needed. E. Lack of agreement on best practices lack of agreement on research, lack of standards for programs and staff. F. Insufficient family supports families lack knowledge of educational methods, families not supported to cope with child s behaviors at home. G. Special educators leaving the profession. Using the outcomes as a basis for planning, and working to overcome the barriers, the task force has established six strategic actions needed to provide services for individuals with ASD. The actions include: 1. Develop and implement a three level system of service delivery for the continuous improvement of services to students with Autism Spectrum Disorder (ASD), including a system of resource and training centers. 2. Provide appropriate funding for Autism Spectrum Disorder services and monitor the use of the funding. 3. Develop and pass long-term legislation to enable and support improved services to students with Autism Spectrum Disorder. 4. Enhance opportunities for parents and others concerned to design and implement services for individuals with ASD. 5. Train and support service providers and families to work with students with Autism Spectrum Disorder. 6. Recruit and retain a supply of well-trained service providers. The actions will be described in detail as they relate to the various requirements of Oregon Law 1999 Chapter

10 The state will develop and implement a comprehensive system of service delivery for students with Autism Spectrum Disorder. The core of the system will be the Oregon Autism Spectrum Development Center (ASDC). The role of the ASDC will be to provide a venue for the continuous improvement of autism services in Oregon. This will be accomplished through research, the dissemination of information, and program development. Intensive training and model educational sites will be provided through Regional Autism Model Centers (RAMCs). The EI/ECSE programs and local school districts are responsible for the day-to-day instruction of students with Autism Spectrum Disorder. The Autism Task Force recognizes the long-standing difficulty of operating two separate systems to provide the educational and residential support needed for individuals with Autism Spectrum Disorder and their families. In order to provide comprehensive services, a clearly defined mechanism must be mandated to ensure that the Mental Health Developmental Disabilities Services Division (MHDD), other state and local service agencies, and the Oregon Department of Education (ODE) work together. To accomplish this mandate, all children determined eligible for educational services with ASD should become eligible for MHDD services. The two agencies should immediately begin to forge this partnership. The recommendations of this Task Force are premised on this mandate. The Oregon Department of Education is requested to include the responsibility of MHDD in relationship to Autism Spectrum Disorder and the involvement of MHDD staff in services offered by the ASDC in the interagency agreement between the ODE and the Department of Human Services (DHS). Families represent a very significant resource affecting a child s development. Residential family support services designed in collaboration with educational services can provide the support necessary to keep a child with ASD in the home. Residential services that are focused on the needs of children within the family context will enhance family interactions. The first preference for residential services will be through training provided in the home of the child and family. The services must offer a combination of training, resources, and family support activities. Typical support services for children and their families may include consultation and personal care, such as in-home assistance with feeding, grooming, etc., as well as respite care. Services and allowable expenses will be defined in administrative rule and provide clarification for such items as adaptive equipment and special supplies. Comprehensive services for high need children will include intensive in-home care as well as twenty-four hour care in out-of-home settings. These services are the responsibility of MHDD and other agencies. It is the hope of the Autism Task Force that the development of improved services will decrease the need for a separate, segregated residential school, distant from the student s home. 8

11 The Oregon ASDC will lead in the design of an intensive residential service training plan and assist in the set-up of model sites for the training. The training and model sites will focus on: = In-home behavioral supports = In-home child care supports = Community/neighborhood resource supports = Respite care from trained providers = Foster care setting where families are specifically trained = Group homes with specific staff training Services to be available for specific children: = Long-term care or treatment or private setting where staff are specially trained Residential and in-home services for children will be predicated on continued support from local school districts, other local agencies, and parents. Training will be provided for educational staff to learn about the requirements for becoming eligible for MHDD services. As soon as a child is MHDD eligible, the child is given a case manager, even if services are not needed at the current time. Intensive in-home services may include shift staffing that supplements care provided by parents and other family members, group homes, or foster homes. Out-of-home care settings may include community residential facilities such as foster homes or small group homes. In-home behavioral supports include systems and resources for modeling and managing challenging behavior issues. Community/neighborhood supports will help families identify and access resources in the community. In many families, it is common for children to attend day care or afterschool care, interact with peers and adults outside the family, and stay with a child care provider. Families of children with ASD deserve that same opportunity. Respite care is an essential part of the overall support that families may need to keep their child at home. It can be provided in the child s home or in a variety of out-of-home settings. Since not all families and children have the same needs, respite care should always be geared to individual family and child needs by identifying the type of respite needed and matching the need to the services. Foster care, group home, and long-term care providers offering support to children with autism spectrum disorder must participate in training designed for working with these children. The training will focus on behavioral strategies, structuring environments, communication skills, daily living skills, social skills, and leisure interests. Training must be available for both the family and the service providers to participate in together. Adequate time must be allocated for participation in the training and follow up activities. 9

12 Oregon Law 1999 Chapter 1046 Part 2: The task force recommendations shall include but not be limited to: Scope of services provided, including consideration of age and severity of disability. Recommendations: To ensure that a continuum of educational services is offered to students with Autism Spectrum Disorder (Mild to Severe Autism, Asperger s, Pervasive Developmental Disabilities-Nonspecific, etc.) and that the continuum is provided for students from birth through age 21, Oregon must expand the array of services currently in place. To accomplish this expansion, the Autism Spectrum Development Center (ASDC) should be established to gather, evaluate, and disseminate information for the continuous improvement of services for students with Autism Spectrum Disorder. The Center is an entity, rather than just a location, to help build the appropriate service systems for working with child with autism spectrum disorder. Oversight of Oregon s ASDC will be provided by a board of directors. The function of the board will be: (1) Establish policy for the ASDC, (2) Participate in the hiring of a director, (3) Review programs and provide an annual report to the State Board of Education and the community The board will be composed of individuals appointed by and responsible to the State Board of Education. The majority of the board will be made up of parents of individuals with ASD representing the range of the spectrum and representative of the entire state. Additional membership should include a Higher Education representative, a Regional Autism Model Center director, an Early Intervention/Early Childhood Special Education (EI/ECSE) provider, an Education Service District (ESD) representative, (2) MHDD (administration and direct service) providers, a teacher, a member of the medical community, and representatives of local education agencies. The staff for the ASDC will include a director and staff representing a variety of disciplines. All staff members will be appropriately certified as required by the Oregon Department of Education. The ASDC will be coordinated and funded through the Oregon Department of Education. The Department of Education will contract with an external agency to provide the service of the Center. The Oregon Autism Spectrum Development Center (ASDC) will provide statewide assistance and recommendations for: ❾ Research The Oregon ASDC will adopt guidelines for the scientific method of review and analysis of current research. Using the guidelines, the ASDC will review current research and disseminate significant research results to the field. The research will guide the ASDC, 10

13 Regional Autism Model Centers (RAMCs), and the EI/ECSE and Local Education Agency (LEA) programs in the implementation of instruction for students with Autism Spectrum Disorder. Sources for research information include the work of other state s autism task forces and activities, private research reported in peer reviewed journals, research by higher education, medical and public health research, research from the National Institutes of Health, and field-based research within educational settings. The ASDC will evaluate research and may conduct its own research to recommend standards concerning the content and delivery of services for students with Autism Spectrum Disorder. The ASDC will design and monitor guidelines for assessment and eligibility determination of students suspected of having Autism Spectrum Disorder. The ASDC will revise the Autism Spectrum Disorder Implementation Plan (Oregon Department of Education, August 1998) and use it as the framework for the service delivery recommended by the ASDC. The ASDC will design and demonstrate appropriate service delivery models. In addition, the ASDC will identify new research that is needed and seek grants to complete such research. Potential sources of funds for this research include private foundations, federal funding, and Autism Spectrum Disorder related foundations, in addition to the research budget included in the ASDC total budget funded by the legislature. ❾ Autism Spectrum Disorder Information Dissemination The ASDC will provide information for parents, educational service providers, medical providers, law enforcement, community agencies, and the general public. The ASDC will collect information from published research, visitations to model sites around the country, interagency collaboration with higher education, and networking with other states and programs. The ASDC will provide parents the information they are seeking about Autism Spectrum Disorder, the implications, and intervention approaches, techniques, and strategies. Fact Sheets (short topical summaries) will be developed and distributed to the Regional Autism Model Centers, physicians, local districts, EI/ECSE programs, and other public sites. Information will also be available through interactive web-sites, linking states, public programs, private providers, and individuals. Internet access will be used to maintain list servs and on-line bulletin boards. The ASDC will maintain a lending library that includes books, videos, interactive CDs, and computer software. The ASDC will maintain a statewide directory of local service providers and community resources, both public and private. The directory will be available to parents as well as service providers. The ASDC will maintain a toll-free number for parents and the general public to access information concerning Autism Spectrum Disorder. Parents need an avenue to talk to each other and with service providers. The ASDC and Regional Autism Model Centers will act as a clearinghouse for parents to share 11

14 questions, concerns, and successes. Parents and service providers will be offered training on using positive communication. In addition, the ASDC will offer specific workshops for parents concerning state and federal laws and regulations, how to advocate for your Individual Family Service Plan/Individual Education Program (IFSP/IEP), the IFSP/IEP process versus the product, and how to advocate using positive communication. The ASDC will develop and update a resource manual for including students with Autism Spectrum Disorders in regular school programs (general education, curriculum, classes and activities). The ASDC will plan and conduct conferences in partnership with other agencies, professional organizations, and parent groups. ❾ Statewide Training Ongoing training must be available to parents, administrators, teachers, related services providers, educational assistants, medical service providers, and the general community. Training will be provided through a long-range cyclical plan, that is updated on a regular basis. The training objectives and modules will be designed by the ASDC in cooperation with the Oregon Department of Education and Higher Education. The training modules will be disseminated to the Regional Autism Model Centers. All training programs will require the collection and analysis of outcome data to determine the effectiveness of the training. Training will focus on five general areas to include: Overview, Topic Lectures, Basic Training, Instructional and Behavioral Methodologies, and Data Collection. ❾ Independent Certification Standards for Service Providers The staff working with students with Autism Spectrum Disorder require very specific expertise. In order for the individualized programs for students with ASD to be effective, service providers must demonstrate the ability to use a broad array of skills and strategies to design and structure the most appropriate and effective services possible. There is a shortage of qualified professionals available to work with these students. Higher Education programs must train additional personnel to work with students with Autism Spectrum Disorder. In addition, the ASDC, with input from RAMCs, and in collaboration with the Oregon Department of Education and Higher Education will design and recommend the implementation of tiered training and certification for: A. Special Education Teachers B. Other Service Providers C. Education Assistants D. Autism Spectrum Disorder Specialists The recommended certifications will occur through an agency other than Teacher Standards and Practices Commission, in a process similar to the Child Development Specialist certification approved by the Oregon Department of Education. Additional 12

15 certification may be available through an independent agency established to certify behavior analyst practitioners such as the Association for Behavior Analysis. These additional certifications will not take the place of Teacher Standards and Practices Commission teacher licensure requirements but will serve as an enhancement to those requirements. The ASDC Board will develop and approve guidelines for the roles and responsibilities of the four categories of service providers. The certification requirements will be based on those guidelines and approved by the ASDC Board. Certification areas will be designed based on current best practices research and reviewed annually. Services providers will emphasize different skill areas depending on their depth of experience, and their role in the instruction of children. The training to obtain certification will be provided by Higher Education and both the ASDC and Regional Autism Model Centers. The coursework must be available to service providers and parents statewide. Using a variety of distance education strategies (on-line courses, Interactive CDs, V-tel, etc.), the ability of teachers and other service providers and parents to participate will be increased. Higher Education programs can develop a consortium to offer coursework. Follow-up to the training will be provided by the ASDC staff, Higher Education faculty, and others, working on-site with students to assure fidelity of implementation. ❾ Recruitment and Retention The educational climate must be enhanced to recruit and retain professionals. This can be accomplished by improving the working conditions and compensation for the professionals working with students with Autism Spectrum Disorder. Working conditions can be enhanced through administrative and school board support, adequate training on strategies for working with students with Autism Spectrum Disorder, conflict resolution training, networking with other professionals, and time for all personnel and parents to plan for and work with students. Among the trainings offered by the Center, there will be some at low cost or no cost to school personnel or to school districts offered regionally at times during and outside normal work hours. This will be done to accommodate both personnel and districts. These trainings will include, but not be limited to, conflict resolution and strategies for working with students with Autism Spectrum Disorder. Individuals acquiring certifications as identified in this document may find enhanced opportunities for securing employment and for differential pay based on their increased training in the area of Autism Spectrum Disorder. This availability of opportunities is dependent upon each individual school district and its recognition of the certification for such purposes. 13

16 ❾ Criteria for Service Delivery The ASDC will assist ODE to establish guidelines for program development using peerreviewed, science-based research to identify elements of effective practices. The ASDC will focus on the features of best practices based on research rather than mandating a specific treatment. Current best practice is not a set of procedures but an ever-changing body of knowledge based on research and student results. Training and consultation services must emphasize that a highly structured, data-based approach is vital for children to achieve greater success educationally. The purpose of identifying effective practices is to encourage districts to implement effective programs, learn from each other, and assist each other in improving practices that result in increased performance and achievement of students with ASD. Comprehensive programming must address IFSP/IEP needs across multiple developmental domains and in multiple environments. According to the research, areas of agreement about effective practice include: = Earliest possible start to intervention = Individualization of services for students and families = Systematic, planful teaching = Specialized curriculum = Intensity of engagement = Family involvement (Infants And Young Students 1999; 12(2): 17-26) Parent information and training must be provided and made accessible. Within the continuum of services, parents must be informed of all the options and given the opportunity to be involved in choice. The continuum of services must continue to evolve, as there must be an opportunity to create services that match the need of the student. ❾ Evaluation of Programs Improvement of student achievement is the basis for evaluating services. Service programs must be evaluated at least on an annual basis. The ASDC will recommend additions to the Oregon Department of Education s standards for determining effectiveness of programs for students with ASD. Ongoing evaluation should include, but not be limited to, indicators that identify student achievement, comparison of individual and group progress, input and process (parent satisfaction, teacher satisfaction, level of training, staff, curriculum components), and how well the program is implemented. Instructional effectiveness, as measured by improvement of child behavior, increased learning, and meaningful progress towards goals, shall be continually monitored. 14

17 In addition to program information, data collections systems should be developed to accurately determine the number of students identified with autism spectrum disorder, the severity of the disability, and the existence of co-morbid conditions. The Center will be evaluated by an independent agency with input from consumers and constituents. Areas of strength and weaknesses in regard to instructional practices and program effectiveness and user responsiveness will be identified. ❾ Independent Facilitator for Parents When districts and parents have difficulty problem solving a situation, the ASDC will act as an independent facilitator prior to requesting mediation by: = Identifying people who can mediate = Training ODE mediators = Assisting with local Alternative Dispute Resolution programs ❾ Recommend and Monitor Caseloads For Intervention With Students With Autism Spectrum Disorder Caseloads will vary depending on the age of the student, the severity of needs, and the level of intervention needed. Caseloads will also be identified by role, direct instruction, and consultation. Caseload determinations must be followed with matching funds to maintain caseload levels. ❾ Seek Additional Funding Resources The ASDC will seek additional resources of funding for all aspects of the system of Autism Spectrum Disorder services. Regional Autism Model Centers In order to provide the necessary practical training for all partners in the service delivery model, Regional Autism Model Centers (RAMCs) will be developed. The RAMCs will exist in eight regions of the state. The boundaries will be the same as exist for the current Regional Low Incidence Programs. The RAMC activities will be patterned for best fit to regional needs. Each RAMC may provide the following: = Develop a mentor teacher program, in collaboration with the statewide mentor program = Develop and operate research based model program site(s) = Provide training on set-up of model sites = Provide training on use of appropriate instructional strategies for students with Autism Spectrum Disorder. Training will occur at model site with follow-up and additional training at direct instruction site. = Develop and/or operate model program sites in cooperation with local agencies = Assess students to determine eligibility, identify needs, plan programs (diagnostic evaluations) 15

18 = = = = = = = = Develop behavior management plans Assist with parent to parent contacts Assist with referrals to other local services Offer family information sessions Provide consultation to schools, professionals Develop regional networks Provide technical assistance Provide direct instruction, in model sites, in collaboration with local agencies Each RAMC will have a director and appropriately trained staff. There will be an advisory board for each Regional Autism Model Center. The board will consist of the director, representatives of parents, school districts, ESDs, physicians, EI/ECSE, and when appropriate, individuals with Autism Spectrum Disorder. The board will report annually to the ASDC board and the community. RAMCs will obtain annual program evaluation data from the ASDC and make modifications in training and services based on the data. RAMCs will provide public and private schools, families, and other community agencies information about the services and seek support to work together. The RAMC will sponsor local and regional workshops for providers and parents to come together to receive and share information. The workshops will offer opportunities for parents, educators, the medical community, and the legal community to hear the same information at the same time and dialogue about the training. The workshops will also offer the opportunity for participants to network face to face. The RAMCs will provide consultation and training to organizations (e.g., Y s, churches, community centers, day care, recreation programs). Through the development of the RAMCs, EI/ECSE staff and LEA staff will increase their access to consultation and training from Autism Spectrum Disorder specialists. Staff for the RAMC will include autism specialists, behavior specialists, and family advocates who have expertise in autism, resources, behavioral and communication issues, teaching strategies, and community integration. Family advocates will do home visits and work with parents in prioritizing their needs and planning services. Advocates help the family seek additional funding and/or services. They may also provide basic parent/caregiver training, make available crisis intervention teams that assist to calm the crisis, and staff to help set up a program. Oregon Law 1999 Chapter 1046 Part 3: Identify existing or proposed curricula. Recommendations: The ASDC will provide information on best practice for educating students with ASD. Each student with Autism Spectrum Disorder has a unique set of strengths and weaknesses. Curricular emphasis is comprehensive and is designed to meet the needs 16

19 of children who vary widely in developmental levels and learning styles. Initially the focus is on creating foundation skills in several critical areas (e.g. compliance, matching, imitative behavior, receptive language skills). These are the building blocks for the subsequent learning of more complex skills. Extensions from the foundation skills are highly individualized. The same skills are taught via many and varying instructional adaptations, depending upon the child s learning characteristics. Instruction should match the learning style of the child, as some children appear to learn more easily visually, while others learn better auditorally. Curriculum should include systematic instruction procedures that focus on the acquisition of skills and reduction or elimination of interfering behaviors. An integrated curriculum, one that teaches concepts across subject areas and provides repetition and reinforcement to help students process information, is recommended. The curriculum should be delivered in a variety of ways, which encourage active participation and social interaction. The impact and success of the curriculum for each child should be monitored through frequent and standard data collection and modified or changed as needed for student success. Socially significant behaviors include reading, academics, social skills, communication, and adaptive living skills. Adaptive living skills include gross motor and fine motor skills, eating and food preparation, toileting, dressing, personal self-care, domestic skills, time and punctuality, money and value, home and community orientation, and work skills. (Report of the MADSEC Autism Task Force March 2000.) Oregon Law 1999 Chapter 1046 Part 4: Identify potential funding sources. Recommendations: Basic Funding The Oregon Legislature will provide separate and additional general funds to establish the ASDC and the RAMC. Funding will be sufficient to staff all centers and program components so the mission can be fulfilled. The Business Plan for initial staffing of the Autism Spectrum Development Center (ASDC): (1) Director (2) Researcher (1) Financial Resource Developer (2) Secretary/receptionist (2) Information & Dissemination Specialist (1) Technology Specialist 17

20 The estimated cost of the above staffing plan for the ASDC will be approximately $1,500,000 per year and $2,500,000,000 per biennium. Potential Sources for Supplemental Funding The Center will aggressively seek public and private funding to supplement the general fund for the ASDC and for the RAMCs. Reform of state funding of Special Education both generally and specifically for Autism Spectrum Disorder is needed. Twice Basic funding is not sufficient to cover the educational costs of students with severe Autism Spectrum Disorder. The educational needs of those with ASD are complex and intense; therefore, there is a need for significantly increased funding for their education. A possible solution will be for the State to contribute whenever the cost of a student s special education program exceeds three times the basic school support. The ASDC will develop entrepreneurial ventures that may include the marketing of training materials and instructional products developed by the RAMCs. The materials could be offered to other states and individual programs. The ASDC will seek support of National Alliance for Mental Illness to lobby insurance companies for access to insurance to cover costs for intensive intervention with the diagnosis of Autism Spectrum Disorder. Look at insurance claims that have been successfully supported by insurance companies. The ASDC Board and the RAMCs boards will set up an Autism Spectrum Disorder Endowment Fund to receive gifts of cash, securities, or property. The assets of the fund will then be used to enhance programs and services for students with autism spectrum disorder. The ASDC will explore administrative billing for Autism Spectrum Disorder services through the Office of Medical Assistance Programs (OMAP). OMAP will research the availability of the Katie Beckett Medicaid waiver. The ASDC will combine efforts with other agencies within the state (Developmental Disabilities, the Department of Human Services, OMAP). The ASDC and RAMCs will collaborate with Higher Education to write proposals for training grants. The ASDC and RAMCs will encourage and assist local school districts and other local programs to seek other funding. Make available publications that identify funding sources and opportunities. 18

21 Oregon Law 1999 Chapter 1046 Part 5: Identify Selected Site or Sites The task force did not agree that a single, residential site was needed or beneficial. A continuum of residential sites must be available to meet the needs of students with ASD. These services should be coordinated with the educational program. The school district in which the sites are located is responsible for providing the education. A skeleton system currently exists within Mental Health Developmental Disabilities to build capacity for those children who are eligible, to support children in their homes, or through the residential care services. MHDD offices are located in all counties of the state. Additional long-term care and treatment sites, and private providers may be available based on the need of the individual child. Recommendations for Implementation: In order to effectively implement the recommendations outlined above, several legislative actions must occur: 1) Provide ODE the authority and adequate funding to develop the ASDC and the RAMCs, and give the ASDC and the RAMC boards authority to provide oversight for the program. A) The RAMCs will be an enhancement and support of updated Regional Autism Services to incorporate an array of services to meet local need. The focus of service is described on page 15. 2) Allocate additional funding for more intensive intervention 3) Enhance and expand training for MHDD providers by increasing ASD services funding and dedicating training dollars. 19

22 APPENDIX A OREGON LAWS 1999 CHAPTER 1046 AN ACT SB 765 Relating to state residential school for students with autism. Be It Enacted by the People of the State of Oregon: SECTION1. (1) There is created the Caring for Oregon's Students with Autism Task Force consisting of 10 members. Members shall be persons who are familiar with the educational needs of students with Autism. One member shall be a member of the Legislative Assembly selected jointly by the President of the Senate and the Speaker of the House of Representatives. Nine members shall be appointed by the Governor and shall include: (a) Four parents of students with Autism; (b) A member of the governing body of a school district; (c) A representative of the Department of Education; (d) A representative of an education service district; (e) A special education director of a school district; and (f) A representative of a regional Autism program. (2) The task force shall: (a) Review the Department of Education Autism Implementation Plan and other relevant information and make legislative recommendations regarding the development and implementation of a continuum of educational services for students with Autism Spectrum Disorder, including but not limited to a state residential school for students with Autism. The task force recommendations shall include but not be limited to: (A) Potential funding sources; (B) Selected site or sites; (C) Scope of services provided, including consideration of age and severity of disability; and (D) Existing or proposed curricula. (b) File a report with the appropriate Senate or joint interim committee with jurisdiction over education containing specific legislative recommendations according to the provisions of ORS to not later than July 1, (3) The task force is subject to the provisions of ORS to and has the authority contained in ORS and Notwithstanding the provisions of 20

23 ORS and subsection (2)(c) of this section, the task force may file its written report at any time within 30 days after its final meeting, or at such later time as the appointing authorities may designate. (4) The Department of Education shall provide staff necessary for the performance of the functions of the task force. The task force shall use the services of permanent legislative staff to the greatest extent practicable. (5) A member of the Legislative Assembly appointed to the task force shall be entitled to an allowance as authorized by ORS from funds appropriated to the Legislative Assembly. Other members of the task force are not entitled to compensation and expenses and shall serve on the task force on a volunteer basis. (6) All agencies, departments and officers of this state are directed to assist the task force in the performance of its functions and to furnish such information and advice as the members of the task force consider necessary to perform their functions. (7) The task force may accept contributions of funds and assistance from the United States, its agencies or from any other source, public or private, and agree to conditions thereon not inconsistent with the purposes of the task force. All such funds are to aid in financing the functions of the task force and shall be deposited in the General Fund of the State Treasury to the credit of separate accounts for the task force and shall be disbursed for the purpose for which contributed in the same manner as funds appropriated for the task force. (8) Official action by the task force established pursuant to this section shall require the approval of a majority of the members. All legislation recommended by official action of the task force must indicate that it is introduced at the request of the task force. Such legislation shall be prepared in time for presession numbering and presession filing pursuant to ORS , for presentation to the regular session of the Seventy-first Legislative Assembly. Approved by the Governor September 1, 199 Filed in the office of Secretary of State September 1, 1999 Effective date October 23,