TENNESSEE COUNCIL ON AUTISM SPECTRUM DISORDER ANNUAL REPORT

Transcription

1 TENNESSEE COUNCIL ON AUTISM SPECTRUM DISORDER ANNUAL REPORT MARCH 2019

2 A NOTE FROM COMMISSIONER BRAD TURNER Since the turn of the century the prevalence of an autism diagnosis has been on the rise. Right now the Centers for Disease Control estimates that one out of 59 children in the United States has been diagnosed with Autism Spectrum Disorder. In order to develop a long-term plan of care to support people with ASD from birth through adulthood, the Tennessee Council for Autism Spectrum Disorder was created by Gov. Haslam and the Tennessee General Assembly in This council brings together state agencies that play a role in supporting people with autism through the lifespan as well as people and their families. These are all important voices in making sure the state looks at various options and ensures our focus is on the priorities that matter most. People with ASD are contributing to their communities and our state every day. It is my hope that the work of the council will make great strides in supporting people in their classrooms, their jobs, their homes and their everyday lives. I want to thank the Council for the passion, dedication and all of the hard work they ve put into improving the state for people and families. I am pleased to receive this report on the Council s work through its first year and a half. I look forward to sharing the results and continuing to watch the progress made on behalf of the thousands of families across the state that are looking to us for advocacy and support. Brad Turner Commissioner, Dept. of Intellectual & Developmental Disabilities 2

3 TENNESSEE COUNCIL ON AUTISM SPECTRUM DISORDER ANNUAL REPORT TABLE OF CONTENTS 4 INTRODUCTION 7 INFORMATION/RESOURCES FOR INDIVIDUALS AND FAMILIES 8 EARLY INTERVENTION/EDUCATION 9 HEALTH CARE 10 AGING/ADULTHOOD 11 TENNESSEE COUNCIL ON AUTISM SPECTRUM DISORDER

4 INTRODUCTION This first annual report of the Tennessee Council on Autism Spectrum Disorder reflects the power of collaboration and commitment. It also demonstrates the true meaning of the Volunteer State. Individuals on the Autism spectrum and their family members have given of their time and talents to make the Council a success. Tennessee has a strong tradition of advocacy, support, research, and engagement on behalf of individuals on the autism spectrum. Individuals with autism spectrum disorder (ASD), family members, health care providers, educators, social service professionals, researchers and academics have worked to understand autism and to build a foundation of collaboration and supports and services. In 2002 the Senate Joint Resolution 567 Committee a group of citizens and policymakers, developed recommendations for addressing the needs of children and youth with autism and their families. In 2009 a Tennessee Summit Team was formed. The volunteer efforts of a broad spectrum of stakeholders led to shared commitment to create a comprehensive, coordinated system of care for individuals with ASD and their families. By 2015 the team had engaged hundreds of people to participate in Community Conversations to advise and plan for ways to achieve a system of care in order to improve the quality of life for individuals with ASD and their families. The Tennessee Autism Plan was the culmination of the ideas, discussion, data, and talents of this diverse group of Tennesseans. The Tennessee Council on Autism Spectrum Disorder, the major recommendation of the plan, has assumed the mantle. This report reflects its hard work. The Council seeks to build our state s capacity to support the new and the aging generation of individuals with ASD so that they may live quality, independent and productive lives. Representatives of family-based organizations often say When you ve met one person with autism, you ve met one person with autism. Each individual with this diagnosis is unique, and the way it impacts their life may be very different from another with the same diagnosis. Autism impacts more than the day-to-day of that individual, it impacts his or her family and our larger community. The Council s comprehensive lifespan approach and foundation of individual- and family-centered care reflected in this report demonstrates its understanding of the nature of the impact and a commitment to changing lives and the community. Executive Director Tennessee Disability Coalition 4

5 The Tennessee Council on Autism Spectrum Disorder was created through legislation introduced by Representative Ryan Williams and Senator Doug Overbey and signed into law by Governor Haslam on April 5, Long sought by Tennesseans with autism spectrum disorder and their families, as well as advocacy groups across the state, the Council was legislatively tasked to establish a comprehensive statewide long-term plan for a system of care for individuals with autism spectrum disorder and their families. The Council is to make recommendations and provide leadership in program development regarding matters concerning all levels of autism spectrum disorder services, including, but not limited to health care, education, and other adult, adolescent, and children s services. Further, the formative legislation established seven directives for the council to follow as a general roadmap to attaining the legislative goals. Those directives are as follows: 1. Assess the current and future impact of autism spectrum disorder on the residents of the state; 2. Assess the availability of programs and services currently provided for early screening, diagnosis, and treatment of autism spectrum disorder; 3. Seek additional input and recommendations from stakeholders, including, but not limited to, families, providers, clinicians, institutions of higher education, and those concerned with the health and quality of life for individuals with autism spectrum disorder; 4. Develop a comprehensive statewide plan for an integrated system of training, treatment, and services for individuals with autism spectrum disorder; 5. Ensure interagency collaboration as the comprehensive statewide system of care for individuals with autism spectrum disorder is developed and implemented; 6. Coordinate available resources related to developing and implementing a system of care for individuals with autism spectrum disorder; and 7. Coordinate state budget requests related to systems of care for individuals with autism spectrum disorder based on the studies and recommendations of the council. 5

6 Our charge is clear and the need is immediate, as recent data from Tennessee indicated that the rate of autism spectrum disorder continues to increase. According to the CDC s Community Report on Autism 2018, the rate of autism spectrum disorder in Tennessee is currently at 1:64, and based upon national data, this is expected to increase further. In a typical year in Tennessee, about 1,275 children will be born with an autism spectrum disorder, and each of these children will benefit from early recognition and appropriate services throughout their lives. In forming the Council, Governor Haslam appointed three family members and/or selfadvocates from each grand division of the state (West, Middle and East). Additional seats are held by designees from each state department, council or commission potentially involved with individuals with autism spectrum disorder over their lifespan, including: Department of Intellectual and Developmental Disabilities (DIDD), Department of Education, Department of Health, Department of Human Services, Department of Mental Health and Substance Abuse Services, Department of Commerce and Insurance, Division of TennCare, Tennessee Council on Developmental Disabilities, and Tennessee Commission on Children and Youth. The composition of the Autism Council is in line with the Tennessee Legislative Joint Ad Hoc Disability Services Committee s recommendation: Ensure better coordination between services and departments. Possibly create a Disability Subcabinet made up of commissioners from each of the departments providing disability services. This Council is a successful example of the working collaboration of many of the state departments providing services to individuals with autism spectrum disorder. 6

7 Composed of 18 Members, the Council operates under the administrative support of DIDD s Division of Policy and Innovation with the DIDD Director of Developmental Disability Services serving as staff liaison. The Council meets quarterly in Nashville and held its inaugural meeting on October 4, 2017, followed by first year meetings in 2018 on January 23, April 24, and July 24. The Council has held two quarterly meetings in its second year, on October 30, 2018, and January 29, The Council voted at its inaugural meeting to create and operate through four working committees: Information/Resources for Individuals and Families, Early Intervention/Education, Health Care, and Aging/ Adulthood. Each Council member serves on at least one of the four committees, which further include additional community members with particular subject matter expertise. The committees meet for onehour WebEx conference calls within the month prior to full Council meetings. Calls have been held on January 9, April 3, June 26, and October 2, 2018, and January 8, Each committee developed an assessment of the current and future impacts of autism spectrum disorder as well as availability of services for autism spectrum disorder to guide action items on which to focus its work. These assessments were adopted by the full Council at the July 24, 2018 meeting and revised at the January 29, 2019 meeting. The four committees and their respective assessment and action items are summarized as follows, along with additional avenues of focus and exploration for each: INFORMATION/RESOURCES FOR INDIVIDUALS AND FAMILIES ASSESSMENT AND ACTIONS: Information needed by individuals and families about services and supports for autism spectrum disorder are both inconsistent and difficult to access. No matter where a family lives, they should have access to accurate and up-to-date information ( no wrong-door ). The Autism Council supports policy changes to develop a Lifespan Approach that includes a resource map and timeline of suggested actions for families and individuals seeking resources, and this will provide additional information on legal and financial supports. The committee has adopted a Lifespan Approach to categorize information/resources provided to families among agencies by age group of individuals served: Birth to 3 years old 3 to 5 years old 5 to 21 years old 21+ years old Areas of focus and exploration for this committee include: 1. Ensure a statewide repository of accurate and up-to-date information and resources through the Tennessee Disability Pathfinder. 2. Develop and strengthen pathways to information and resources. 3. Annually evaluate the statewide repository (Tennessee Disability Pathfinder) related to county level stakeholder engagement and set goals for improvement. The Information/Resources for Individuals and Families committee s Action Item is in line with the Tennessee Legislative Joint Ad Hoc Disability Services Committee s recommendation: Create a statewide Disability Services Concierge to allow a seamless entry into services. Have a no wrong-door policy within state government, so that no matter where an individual with a disability or family member goes seeking services, they get consistent information that guides them to the services and supports that are appropriate. 7

8 EARLY INTERVENTION/EDUCATION ASSESSMENT AND ACTIONS: Current training concerning the specific educational interventions for autism spectrum disorder are lacking and poorly coordinated for both families and educators. The Autism Council will advocate for policies that provide parent, teacher, and administrator training for both the early intervention (ages birth to 3 years old) and education systems (ages 3 to 22). In addition, the Autism Council recommends policies that support a family-centered collaborative approach for individuals, families, and educators concerning educational rights and responsibilities. Areas of focus and exploration for this committee include: 1. Recommend and collaborate with the Tennessee Department of Education and/or the legislature on behalf of the Tennessee Early Intervention System (TEIS) for funding for supports to have the providers needed to serve current and expected increase number of children with autism spectrum disorder from birth to 36 months old. 2. Coordinate with TEIS to provide contact information to KidCentralTN and the Autism Council websites. 3. Recommend and collaborate with the Tennessee Department of Education and local education authorities (LEA) to develop policies that ensure teachers who work with special education students have at least 3 hours of in-service training focused on autism spectrum disorder. Autism 101 course (TRIAD at Vanderbilt Kennedy Center) Sub-committee will draft proposal to present to the Tennessee Department of Education in Recommend and collaborate with the Tennessee Department of Education around the development of public/private partnerships for after-school care. Review proposals in 12 months. 8

9 HEALTH CARE ASSESSMENT AND ACTIONS: There are inadequate screening initiatives and limited access to early diagnosis for autism spectrum for both young children at risk and older individuals who demonstrate symptoms and impairments. Too many find it difficult if not impossible to access high quality intervention and treatment services. The Autism Council recommends the development of a System of Care (a coordinated network of communitybased services) that is patient-centered, comprehensive, team-based, and accessible that supports the provision of comprehensive health services statewide. This includes policies in collaboration with the Department of Health, the Department of Intellectual and Developmental Disabilities, the Division of TennCare, and other state department Council members that promote both services for patients and training for community health care providers, facilitated through technology, to treat individuals with autism spectrum disorder across the lifespan and support their families. Area of focus and exploration for this Action Item includes: 1. Recommend, in collaboration with the Department of Commerce and Insurance, a gap and feasibility analysis utilizing a grid of services provided by each insurance company and the state of Tennessee. 2. Recommend services based upon the model of The ECHO Project (Extension for Community Healthcare Outcomes) and telehealth opportunities including: y TennCare funding channels through the Managed Care Organizations (MCO) and no fee for service billing y Collaborate with the Division of TennCare (Dr. Vaughn Frigon, Dr. Quentin Humberd, and Dr. Beth Malow from the Autism Council and Dr. Bruce Davis, Deputy Commissioner of Health Services for DIDD) with the Medical Directors of the three MCOs (BlueCare, Amerigroup, and United Health Care) to discuss available features and options (including but not limited to): { Health care across the lifespan in the context of the Medical Home { Early identification of autism spectrum disorder { Support families in obtaining information regarding supports and services 9

10 10 AGING/ADULTHOOD ASSESSMENT AND ACTIONS: Training and transition from the educational system to the workforce is in need of improvement for individuals with autism spectrum disorder, and this contributes to the fact that studies indicate that up to 75% of adults who have received a post-secondary education with an autism spectrum disorder are not employed. The Autism Council will collaborate with Department of Human Services and the Department of Education to report on transition and employment services offered to individuals with autism spectrum disorder in Tennessee to better understand how the provision of services are determined. In addition, the council will promote policies to expand autism-specific trainings for Vocational Rehabilitation (VR) counselors and other employment service providers that serve those with autism spectrum disorder and provide information to potential employers concerning the benefits of employing persons with autism spectrum disorder. Area of focus and exploration for this Action Item includes: 1. The Autism Council recommends the implementation of policy changes encouraging autism spectrum disorder specific training at the vendor level for any providers of employment services under contract with DIDD, the Employment and Community First CHOICES program, or VR. With this recommendation, the Council will request feedback from each department regarding implementation of such policy changes. 2. The Autism Council will request that VR review the impact of the Order of Selection as well as other methodologies utilized to determine provision of employment services and determine whether these tools have precluded individuals with autism spectrum disorder from attaining employment services and employment. Order of Selection is a VR tool utilized to rank individuals by their level of need into 4 categories, with Category I having the most significant disabilities and the other 3 categories having less severe disabilities or other impairments. Categories I and II are currently open, while Categories III and IV are currently closed. An individual who is eligible to receive SSI or SSDI based on disability or blindness is presumed to be eligible for VR services. a. The Autism Council will request recommendations from VR to improve employment outcomes and expand provision of services to include individuals with autism spectrum disorder in Categories III & IV. b. The Autism Council will research and review policies and procedures from other states successfully providing services without utilization of Orders of Selection to determine employment outcomes for persons with autism spectrum disorder. 3. The Autism Council will research the availability of information and best ways to disseminate that information for potential employers in Tennessee to better understand the incentives and benefits of employing individuals with autism spectrum disorder in an effort to assist employers in creating a more diverse workplace. The committee will investigate existing resources in order to identify gaps in needed information for employers. The committee will report these findings to the entire Council within six months with a larger goal of having a guide for employers published in electronic and written form within one year.

11 AGING/ADULTHOOD CONTINUED Resources that will be explored include but are not limited to: Job Accommodations Network (JAN) Office of Disability Employment Policy (ODEP) TennesseeWorks Voc Rehab s Business Employment Consultant (BEC) program Ernst & Young Neurodiversity Centers of Excellence The Arc of Philadelphia Neurodiversity in the Workplace The Aging and Adulthood committee and the full Council would like to support the Tennessee Legislative Joint Ad Hoc Disability Services Committee s recommendation: Appropriate more funding to support more people. There are still about 7,000 individuals on the referral/waiting list. Many people with autism spectrum disorder cannot gain employment because they do not have the supports needed to find and maintain a job. (The referral/waiting list is for services for the Employment and Community First CHOICES program through TennCare.) The Autism Council would also like to support the Tennessee Legislative Joint Ad Hoc Disability Services Committee s recommendation: Develop policies to make the state of Tennessee government a model disability employer. This would include the establishment of specific hiring goals and fast-track hiring of individuals with disabilities. This could only benefit the increased employment of individuals with autism spectrum disorder. Among the Autism Council s areas of Future Considerations and Concerns: Explore the need for affordable housing and residential supports. Explore the disparity in health care and unemployment for women on the autism spectrum over the age of 50 years (versus men) in Tennessee as discovered in research at Vanderbilt Kennedy Center. Explore the VR case closures for individuals with autism spectrum disorder. Explore information related to the bullying of children and adults with autism spectrum disorder. For more information about the TN Council on Autism Spectrum Disorder, you can contact: Patricia Edmiston, DIDD Director of Developmental Disability Services DIDD staff liaison to the TN Council on Autism Spectrum Disorder patricia.edmiston@tn.gov 11

12 TENNESSEE COUNCIL ON AUTISM SPECTRUM DISORDER Governor Haslam s appointments for individuals on the autism spectrum or their family members: REGIONS WEST TN MIDDLE TN EAST TN Jenness Roth Iseashia Thomas Mary Ellen Chase Quentin Humberd, M.D. * Council Chair Beth Malow, M.D. * Council Vice-Chair Emelyne Lyn Bingham William Will Edwards Michael Collins Roddey Coe STATE OF TENNESSEE DEPARTMENT DESIGNEES: Department of Commerce and Insurance Lorrie Brouse, Deputy Commissioner Department of Education Alison Gauld, Behavior and Low Incidence Disabilities Coordinator, Division of Special Population and Student Support Department of Finance and Administration/Division of TennCare Vaughn Frigon, M.D., Medical Director Department of Health Carolina Clark, M.D., MPH, Child Health Medical Consultant Department of Human Services Ginger Day, Autism Spectrum Coordinator for the Tennessee Rehabilitation Center in Smyrna Department of Intellectual and Developmental Disabilities Jeanine Miller, Ph.D., SPE-HSP, Director of Policy, Division of Policy and Innovation Department of Mental Health and Substance Abuse Matt Yancey, Assistant Commissioner Tennessee Commission on Children and Youth Rose Naccarato, KIDS COUNT and Resource Mapping Director Tennessee Council on Developmental Disabilities Wanda Willis, Executive Director

13 DIDD Staff Liaison Pat Edmiston, Director of Developmental Disability Services Division of Policy and Innovation The Tennessee Council on Autism Spectrum Disorder would like to thank the following community members for their commitment and contribution to the Council and to the development of this report: Kim Black Miles Brooks Alice Chamberlain Shauna Collins Emma Shouse Garton Heather Taylor-Griffith Alex Heart TA McDonald, Ph.D. Solita Morris Cari Parr Crissonya Phillips Amy Rader Rachel Jrade-Rice Susan Rollyson Janet Shouse Anita Teague Babs Tierno Carol Westlake Tennessee Department of Intellectual and Developmental Disabilities (DIDD) Authorization No , 200 copies printed. This public document was promulgated at a cost of $2.44 per copy. April

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