Prince Edward Island: Overview and Observations of Services for Autism, Eating Disorders, and General Mental Health Conditions Patricia Conrad, PhD May 27, 2014

Outline Purpose, Research Questions, Methods, Products Autism Eating Disorders General Mental Health Services Observations

Purpose and Products Compile observations about services delivered in each of the four Atlantic Provinces for the five conditions under consideration. As a baseline activity to support the research projects to be undertaken, three separate inventories of services for children and youth with autism, eating disorders, and general mental health services were compiled. Inventory of key provincial documents assembled. Each of the inventories will support various research projects to be undertaken for each condition. Summarize observations and make suggestions about possible research projects

Research Questions What health and community-based services are available for children and youth with an autism spectrum disorder in NB, PEI, NS, and NL? What health and community-based services are available for children and youth with an eating disorder in NB, PEI, NS, and NL? What health and community-based services are available for children and youth with anxiety, conduct, or depression disorders in NB, PEI, NS, and NL? What are the key observations and findings for each condition? What are suggested next steps?

Research Methods and Approach Approach was nonreactive and unobtrusive – Information gathered was extracted from documents and websites where the original intent may have been different e.g., informing patients, providers, general public – The organizations were not aware their information was being compiled since there was no contact or exchange – Caution must be exercised because this research relied only on information available in the public domain including websites, annual reports, strategic plans, accountability reports, service standards, patient guides and resource lists, evaluations, etc. Limitations – No validation or assessment of information credibility through discussion with key informants. – No clarification was sought to interpret meaning or content from the providers of services.

Inventories Annotated inventory of provincial documents related to the five conditions compiled by province. – Of particular interest, was whether any provincial evaluations or studies are available for any of the conditions? Master list of services for Autism Spectrum Disorder – Organized by province Master list of services for Eating Disorders – Organized by province Master list of services for General Mental Health Services for Children and Youth – Organized by province

PowerPoint Presentations Overall observations and research suggestions – Organized by province and by disorders Summary and overview of findings and observations for each province – New Brunswick, PEI, Nova Scotia, Newfoundland and Labrador Summary and observations of services for Autism Spectrum Disorder – Organized by province Summary and observations of services for Eating Disorders – Organized by province Summary and observations of services for General Mental Health Services for Children and Youth – Organized by province

PEI Policy and Planning Documents Provincial government Autism Action Plan Provincial government Guide to Early Years Autism Services Review of Services for persons with Disabilities initiated in 2008 Recommendations in 2012 by Child and Youth Services Commissioner regarding services and program delivery within the following departments: – Education and Early Childhood Development – Health and Wellness – Community Services, Seniors and Labour – Justice and Public Safety

Continuum of Supports available for ASD Students, Educators, and Families Intensive Behavioural Intervention provided by the Department of Education and Early Childhood Development – services are integrated Early Years Autism Team provides assessment and individualized programming for young children Autism Coordinator located in Department of Education Early Childhood Development Specialist located in Department of Education Autism Consultants located with School Boards Parent Training is offered by the Special Needs Family Support Specialist Child Care Subsidy Program (Community Services, Seniors and Labour) Disability Support Program (Community Services, Seniors and Labour). Diagnostic services provided by Health PEI Speech-Language, Occupational Therapy provided by Health PEI

Three Components of EECD’s Integrated Service Model for ASD in PEI INTENSIVE BEHAVIORAL INTERVENTION (IBI) Preschool model for early and intensive intervention IBI may occur in the child’s home or in a child care centre. Program is supervised and monitored by an Early Years Autism Specialist with additional clinical supervision by the Early Years Autism Coordinator. An Autism Assistant is hired by the family or centre to provide direct instruction. TRANSITION TO SCHOOL PROCESS Includes planning beginning 6 months prior to school entry Family information meetings, case conferences, assessment and orientation activities for the child all contribute to the transition process. INTENSIVE KINDERGARTEN SUPPORT Some children with autism will continue to need more frequent and individualized instruction during this important first year of school. Early Years Autism Specialist (AS) can provide regular support for both the school staff and the child with autism. When the child no longer needs this level of support, a school-based Autism Consultant will continue to monitor the child and provide assistance during the remaining school years. Learn more about Intensive Kindergarten Support

Principles underlying Integrated Service Delivery for ASD in PEI (1) Early Intensive Behavioral Intervention (IBI) can have a significant and positive impact on learning for children with autism. Individuals with autism, like others, will continue to learn throughout their lifetime. They require varying levels of support depending on strengths and challenges. Persons with autism often require individualized programming. Assessment is the basis for determining appropriate programs and services. Decisions about intervention and program delivery should be outcome based, using objective measures. A collaborative team approach is an essential component for effective service delivery. Active family involvement, education, and ongoing communication maximize learning opportunities and generalization of skills. The social, linguistic and cultural diversity of families and educators must be recognized and considered in the provision of services.

Principles underlying Integrated Service Delivery for ASD in PEI (2) Services must be provided by appropriately trained personnel at all levels. Pre-service and ongoing professional development is necessary. Many individuals with autism have difficulty with change. Special attention and planning is needed to prepare for transitions at key points. To facilitate successful experiences in an inclusionary school environment, a continuum of supports must be available for both the students and educators. Teaching strategies based on the science of Applied Behaviour Analysis (ABA) have been documented to be effective for individuals with ASD. A variety of behavioural teaching strategies and supports based on peer reviewed research and best practices can be utilized in school, home and community settings. When an individualized behavior support plan is needed to address challenging behaviours, this is based on a Functional Behaviour Assessment (FBA) and emphasizes positive approaches, validated through research.

Eating Disorder Services in PEI Children's Centralized Intake – Referrals are accepted centrally although services are typically delivered in local communities Children's mental health services are provided by a network of multidisciplinary teams located throughout PEI The role of community-based mental health teams re: assessing and treating eating disorders is not known Canada Eating Disorder Addiction Treatment publishes a list of private therapists for NB, PEI, NS, NL There is no provincial eating disorder association for PEI IWK as tertiary centre for Maritime patients has mandate to provide specialist services - specifics about what is provided and accessibility is not known

Components of General Mental Health Services in PEI Children's Centralized Intake – Referrals are accepted through the centralized intake, although services are typically still delivered in local communities Community and hospital-based services are provided throughout the province Provincial Mental Health Crisis Response System – Mental health staff are available through the Emergency Departments at the Queen Elizabeth Hospital and Prince County Hospital Community-based mental health services are provided by interdisciplinary teams who provide the most appropriate care in the most appropriate setting – Treatment may be provided in individual, family, and group setting. Children and youth mental health services include: – Referral screening and navigation, assessment, consultation to other providers, treatment of mental health conditions, crisis intervention

Specialized Youth Services within PEI Justice System Clinical Services Team is a provincial resource which provides assessment and treatment to offenders and high risk community members. – Target population includes high risk youth involved in the justice system. – Programs assist, support, and treat individuals experiencing significant personal behaviour associated with high risk behaviour to self or others. – Team provides training, consultation, and case management support Community Youth Workers – One-to-one casework, counselling and support services; – Community supervision and support for high risk youth and their families;

PEI Observations (1) Provincial planning documents 2012 study by Commissioner Integrated model of service delivery for ASD – Specialized clinical expertise is centralized in EECD that supports local team through consultation/assessment, treatment, training etc. Continuum of services that “appear” to be integrated and coordinated Decentralized, community-based mental health services delivered in local community health centres using multi-disciplinary teams supplemented by in-patient unit (Summerside and Charlottetown) and crisis support – similar to NB

PEI Observations (2) What is the status of the 2012 Recommendation by Child and Youth Services Commissioner? – Departmental jurisdiction should not interfere with services to any child or youth in need Eating disorders do not appear to be well served, no organized provincial advocacy group IWK provides in-patient treatment, specialty clinics, and subspecialty consultation service for Eating Disorders, etc. – Accessibility is not known Specialized services for at risk youth delivered under Justice