Health care services for children with developmental disabilities Do our schools make the grade? Jill Houbé, MD, MPhil, PhD[cand], FAAP, FRCP(C) Assistant Professor, Division of Developmental Paediatrics UBC Department of Paediatrics Clinical Scientist, Centre for Healthcare Innovation and Improvement

Acknowledgements BC Research Institute for Children’s and Women’s Health Children’s Hospital Foundation Centre for Healthcare Innovation and Improvement Centre for Community Child Health Department of Paediatrics, Division of Developmental Paediatrics

Health care services for children with developmental disabilities Statement of the problem Background Definitions of disability Incidence and target populations Organization of special needs school services and law Research issues: outcome measures Proposal for research program

1. Statement of Problem HYPOTHESIS Children with developmental disabilities often do not receive school-based interventions needed to maximize their health and developmental outcomes. Health care professionals diagnose and make treatment recommendations for school-age children with developmental disabilities Local school administrators assign special education services based on predefined categories of need and available resources Medical diagnostic language is different than the special education categorical funding language Budget constraints determine education and health policy, service delivery, and health outcomes

Health care services for children with developmental disabilities Statement of the problem Background Definitions of disability Incidence and target populations

Domains of Development 2. BACKGROUND Domains of Development Fine Motor Motor Gross Motor Speech and Language Cognitive Adaptive/Personal-Social

Developmental Differences: Delay, Dissociation, Deviance Delay: Not necessarily abnormal Implies child may catch up Dissociation: A difference between rates of change ≥ two domains of development e.g. Mental retardation Motor development may be ahead of language or cognitive abilities Deviance: Always abnormal e.g. Autistic 3 year old child with no interest in social or imaginative play

Developmental Trajectories Normal Illness M I LESTONES Delay HIV TIME

High Risk Children Established Risk Environmental Risk Biological Risk Chromosomal abnormalities, e.g. Down Syndrome Environmental Risk Poverty Maternal mental health issues Biological Risk Prenatal exposure to drugs and alcohol Low birth weight and/or prematurity

Incidence of Developmental Disabilities Diagnosis Incidence Mental retardation 3% Cerebral Palsy .3 - .5% Communication disorders common Autism Spectrum Disorder .67% Learning Disabilities 5 - 7% ADHD Epilepsy 10 - 14% .08% Blindness .01 - .05% Deafness .1 - .2 % FAS .01 - .1%

Target Populations: School-age children with educational disadvantage seen at C&W Neurology Clinics: e.g. epilepsy, Tourette’s, Rett’s Psychiatry Clinics: e.g. autism, ADHD Newborn Follow-up Clinic: e.g. VLBW premies, CDH, MCA stroke Sunny Hill SERT Clinic: e.g. FAS, neglect, poverty Sunny Hill Autism Clinic Sunny Hill Pre-Kindergarten Clinic

Why Does Intervention Matter? Prevention of secondary disabilities: Maladaptive behaviour School failure Low self-esteem Family dysfunction Prevention of long-term negative outcomes: Individual Societal Economic

Health care services for children with developmental disabilities Statement of the problem Background Definitions of disability Incidence and target populations Special education service organization and law

BC Columbia Schools 59 School districts and elected boards                                                                                                                                                                                                                         See an alphabetical list                                                                                                                                                                                                                         See an alphabetical list                                                                                                                                                                                                                         See an alphabetical list                                                                                                                                                                                                                         See an alphabetical list 59 School districts and elected boards 1,800 schools 38,000 educators 600,000 students 11% Special Ed enrolment 100% increase/10 years 12% ESL enrolment: 330% increase/10 years 90% in Greater Vancouver

BC School System Ministry of Education School Boards School Districts Control of funding Develop policy guidance Develop curriculum and approve resources Coordinate in-service training Track public concerns and expectations Develop performance indicators Evaluation of results School Boards Allocate funding Develop district policies Monitoring of district needs Monitoring and report of results School Districts Administer spending Administer district policies Coordinate curriculum, resource, and in-service Contract school staff Review education, student and parent concerns Asses school efforts and results Schools Develop school policies in line with district policies Access curriculum resources and deliver curriculum Mentor students Monitor student activities Assess student achievement Monitor and assess safe learning

Organizational Structure Ministry of Education

Accountability, Monitoring and Reporting Function: goal development, planning and implementation of strategies for improved student achievement. Activities: Liaison with individual partner associations and with cooperative groups of partners working on educational initiatives. Goals: Student achievement through continuous improvement. Evidence-based school improvement. Accurate reporting on provincial trends, successes, challenges, and student, community and parent satisfaction.

Accountability, Monitoring and Reporting Three main areas: Student Achievement System Performance Aboriginal Education Special Topics Special Education ESL Diversity

Ministry of Education: Special Education Goal: To support the intellectual development of all students, including those with special needs. Enabling all students to achieve the goals of human, social and career development is a responsibility shared by schools, families and the community. Inclusion: The School Act requires that school boards make available educational programs to all school age persons resident in the district. All students are to be included. A Ministerial Order requires the integration of students with special needs with those who do not have special needs in most instances. Definition: Students with special needs have disabilities of an intellectual, physical, sensory, emotional, or behavioural nature, or have a learning disability or have exceptional gifts or talents. Policy guidelines: Special Education Services: A Manual of Policies, Procedures and Guidelines (includes a summary of the publication, Special Education Policy Framework for BC, 1995)

Other Government Agencies Ministry of Children & Family Development Behavioural support for children with autism Occupational and physical therapy services Government advocacy BC’s Office of the Ombudsman Office for Children and Youth

Federal and Provincial Legislation Canadian Charter of Rights and Freedoms (1985) Section 7 Legal rights Section 15 Equality Rights BC Human Rights Code (1996) BC School Act (revised 1989)

The BC School Act Right 1: Right to attend school Right 2: Right of students to individualized program based on an identified need Right 3 Right to early identification and education intervention Right 4: Right to a written education plan Right 5: Right to placement in the least restrictive environment Right 6: Right to ongoing review and re-assessment Right 7: Right to have interests represented through guaranteed due process Right 8: Right of access to records and confidentiality Right 9: Funding for special needs

Funding for special needs Section 129.1 (1) provides that special education programs are determined by the Minister Section 129.1 (2) states that even though a budget is adopted by a board, it cannot reduce or eliminate the amounts budgeted by the Minister for special education programs below the amounts budgeted in the previous fiscal year without the approval of the Minister Section 129.1 (2) (b) assures that funds designated for students in special education program are spent on those programs

Ministry Funding Categories for Developmental Disabilities Multiple needs (dependent) “A” Moderate to profound intellectual disabilities “C” Physical disabilities or chronic health impairments “D” Visual impairment “E” Deaf or hard of hearing “F” Autism “G” Mild Intellectual Disabilities “K” Learning Disabilities “Q” Behaviour/Mental Illness “R” & “H” Mild/moderate learning disabilities and behavioural disorders are non-categorical

Funding Mechanisms All students generate funding for the school district Special needs students generate supplemental funding (but targeted funding no longer exists for some categories of disability) Amount of supplemental funding depends on category: now organized into 3 levels To be eligible for special education programs and services, a child must meet certain diagnostic AND funding criteria

Funding Mechanisms 1995-2001: Funding Allocation System (FAS) $3.74 billion to districts based on FAS formulas Total funds = No. pupils x per pupil amount 50 factors contributed to the FAS calculation

Special Education Funding 01/2 Core Services $24,371,868 Severe Behaviour Level III $38,742,188 Learning Assistance $90,904,374 Severe Handicapped Level II $130,382,168 Special Health $22,988,605 Hospital/ Homebound $6,672,550 ID/Planning $12,533,459 Dependent handicap Level I $26,095,905 Gifted $3,929,013 Dependent Handicap $87,109,162 Ungerleider, 2003

Funding Mechanisms 2002-2003: Basic Allocation: 1 FTE = $5,308 3.79 billion to districts Funding frozen for 2003/4 and 2004/5 Basic Allocation: 1 FTE = $5,308 Funding for special needs students 3 Levels Special Education Aboriginal Education ESL Adults Supplemental $$$ FTE Level 1 = $30,000 FTE Level 2 = $15,000 FTE Level 3 = $6,000 FTE Aboriginal = $950 FTE ESL = $1,100

Special Education Funding 02/03 Ungerleider, 2003

Recent Policy Changes Increased class size No limits on class composition Removal of high-incidence targeted funding Fewer specialist support/resource teachers Fewer educational psychologists Emphasis on teacher evaluations

Health care services for children with developmental disabilities Statement of the problem Background Definitions of disability Incidence and target populations Special education law and service organization Research issues: outcome measures of delivery and effectiveness

3. Outcome measures of delivery and effectiveness BCTF regional studies: Nanaimo and Coquitlam 2001 Special Education Report BC Ministry of Education Budget and service reports Data collection HELP group efforts to link to BC Health Linked Database

BC Ministry of Education Data by Dataset Annual Student Level Data Collection (SLDC Annual): Data about students’ demographics, school and special program/course registration information for each year since 1995. Longitudinal: Longitudinal data about students and their school registrations as they move through the K-12 system. Transcript and Examination (TRAX): Individual student exam records on provincial and non-provincial examinable courses in Grade 11 and 12 to provide performance standards at provincial level. Foundation Skills Assessment (FSA): Reading, writing and numeracy assessment measuring critical skills that are embedded in the provincial curriculum;grades 4,7,10 School Information: Annual data collection on every public and independent school in the province, such as school name and contact information; facility/organization type; information about school educators. Context of Education: Data on school and school district profiles as well as community profiles. School District Expenditures: Data about school district expenditures over the years. Satisfaction Survey::data from Grade 4, 7, 10 and 12 students, Elementary and Secondary parents, and School Staff regarding their opinions on themes such as achievement, human and social development and safety. Beginning in 2002, this data is collected by the BC Ministry of Education on an annual basis.

HELP Education Data Early Development Instrument (EDI): school readiness data at kindergarten entry 90% of school districts in BC participating as of Spring 2003 Neighbourhood mapping Linkage planned to other datasets, including BCHLD

Health care services for children with developmental disabilities Statement of the problem Background Definitions of disability Incidence and target populations Special education law and service organization Research issues: outcome measures of delivery and effectiveness Proposal for research program

4. Proposed Research Program RESEARCHERS Jill Houbé, CHII and UBC Developmental Paediatrics Laurie Ford, UBC School of Special Education GOAL: Evaluate organization and delivery of school-based intervention services for populations of children with developmental disabilities

Research Design Select study populations with baseline measures of educational need and known risk BC Newborn Follow-Up Clinic <800g premies Autism Clinic SERT Clinic Canadian NICU Network (CNN) database linked to institutional newborn follow-up clinics Focus groups and individual interviews to identify common themes: process and outcomes Surveys of health status, development, behaviour, family stress, education performance, service receipt Linkage to health utilization datasets: BCHLD

Research Design Quantitative outcome measures Self-reported health status Health service utilization Self-reported school achievement Qualitative outcome measures Experiences with health system Experiences with school system Strengths and weakness of organizations Child and family outcomes

Summary “Treatment” of children with developmental disabilities includes school-based interventions Special education organization and funding is complicated, evolving and not a good fit with the medical diagnostic system There are few measures of school service organization and effectiveness and school outcomes for developmentally disabled children Studying target populations at C&W may lead to better understanding of issues around school service delivery for high risk populations Improved understanding of these issues may lead to improved health outcomes in children with developmental disabilities

Division of Developmental Paediatrics established 1989 How life experience, disease or injury affect a child's growth and development Child Advocacy Maureen O’Donnell Family Centered Care Helena Ho Faculty, Centre for Community Child Health Research Medical Director, Child Development and Rehabilitation Program Division Head, Developmental Paediatrics Program Director, Intrathecal Baclofen Program Tim Oberlander Multidisciplinary Services Joined UBC in 1977 first as a research fellow for neurology working on the new born follow-up project under Dr. Henry Dunn focusing on children with Minimal Brain Dysfunction..Later joined the Children Hospital Diagnostic Centre pioneered by Dr. GC Robinson using the multidisciplinary approach to assess children with developmental disabilities. Member of team that organized the first multidisciplinary assessment team for autism in Canada. Clinical work and research relating to growth and nutrition of children with cerebral palsy, spasticity management, and health and well-being of their caregivers of children. On-call service for Sunny Hill Health Centre in-patient ward. Research on Evidence to Practice methodologies including Systematic Reviews and Knowledge Translation strategies. Acting Division Head, 1997 to 2000 Clinical work with infants and children exposed to drugs and/or alcohol. On-call service for Sunny Hill Health Centre in-patient ward. Investigator Award, UBC Human Early Learning Partnership Member, Complex Pain Service at BCCH Faculty, Centre for Community Child Health Research Research Areas:Infant pain,Cardiovascular autonomic reactivity,Developmental effects of prenatal drug exposure Research examining how prolonged early exposure to psychotropic medications (i.e. opioids, antidepressants) during gestation and early infancy alters the developing brain and contributes to developmental and behavioural problems in later childhood. A second area of research focuses on understanding pain in children with developmental disabilities, and investigations of biobehavioural development in children following prenatal exposure to psychotropic medications, and pain in children with cognitive and social impairments. Participated in two multicentre drug trials (fenfuramine, secretin),and completed research on three associated conditions (Fragile x, Kabuki syndrome, Rett syndrome). Among the first follow-up studies of children with autism up to 16 years of age. Published the first guideline for screening children with autism in BC. Founding member of NAGCePP research collaboration, multi-centre study funded by NIH National Center for Medical Rehabilitation Research Team leader for the Autism Team for 25 years, active in BC autism council and a board member for Laurel Group Society and Mainstream Association for Proactive Living, organizations in the community serving children and adults with autism and developmental disabilities. Former chair of the Professional Advisory Board of Autism Society of BC and involved with the BC Neurofibromatosis Association, the psychosocial committee and the Developmental Section of Canadian Pediatric Association as well as the North West Society for Developmental and Behavior Pediatrics. Division of Developmental Paediatrics established 1989 Carey Matsuba Don Hill Rob Hill first Division Head Bob Armstrong Quality of Life Autism Program Public Health Elizabeth Division Head 1991-1997 Mickelson Fellowship Program established 1995 Visually Impaired Program Clinical work as Preschool assessment team physician leader with clinical interest and research in behavioural phenotypes including unique clinic model of joint assessment with medical genetics. Focus on education including undergrad teaching as 2nd year Growth and Development Patient Based Learning tutorial week captain, CME-GP update course, Pediatric update lectures, residency clinical and half day lectures. Clinical research on behavioural presentation of children with PWS (unfunded project) and member of BC Regional team headed by Dr. Suzanne Lewis for Dr. Jeanette Holden's ASD-CARC (Autism Spectrum Disorders-Canadian American Research Consortium). Child Development Program Hans Dorgelo Clinical work and research in the diagnosis and treatment of visual impairment in infants and children. On-call service at Sunny Hill Health Centre in-patient ward. Leadership role in medical student teaching in Developmental Paediatrics Mike Stephenson Children’s Hospital Diagnostic Centre Jim Jan Cleft palate, myelodysplasia, communication disorders, blindness, developmental delay, Neurology Program Program for the Visually Impaired multiple congenital disorders, chronic diseases Epilepsy Program Sudge Budden Preschool Hearing Program Henry Dunn First multidisciplinary clinic Kojo Asante Christine Loock Marisa Ferrara Dunella Maclean Geoff Robinson Administrative Assistant, Developmental Paediatrics Hearing Disorders Clinic Neurological Development Clinic BC Fetal Alcohol Society Clinical work on children with neurodevelopmental disorders and birth defects including Fetal Alcohol Syndrome and craniofacial conditions Leadership in Undergraduate Teaching, including development of Doctor Patient & Society, CLEO lectures series, Patient Based Learning Tutorials Board Member, Canadian Centre on Substance Abuse Newborn Follow-Up John Dean Northern BC Developmental Services Learning Disabilities Clinic Health Centre for Children Anton Miller John Crichton Cleft Palate Program Bill Arnold One of the first children’s wards with small units, play therapy, and liberal visiting hours for families. Clinical work involves assessment of children who are deaf of hard of hearing as well as school-aged children with problems of learning and behavior. Former director of the Hearing Disorders Program at BCCH (1992 - 1996). Associate researcher, UBC Human Early Learning Project Faculty member, Centre for Community Child Health Research Research interests involve the study and improvement of health services to children and youth with developmental and behavioral disorders and disabilities in community settings, and determinants of health and mental health among children from a population health perspective. Preschool for Non-Verbal Children Bluma Tischler Meningomyleocele Program Preschool for the Deaf Woodlands School for mentally retarded Substance Exposure Resource Team (SERT) Barbara David Miller Roger Freeman David Kendall Donald Paterson Syd Segal Fitzgerald Sunny Hill Staff Physician Speech and Hearing Clinic Crippled Children’s Registry The SERT (Substance Exposure Resource Team) program evolved from the pioneering work of Drs Robinson and Segal in the 1980's on FAS and NAS respectively. As research and clinical experience highlighted the magnitude of poly substance use in pregnancy and resultant adverse neurodevelopmental and neuropsyciatric outcomes, the two separate FAS and NAS clinics at Sunny Hill merged in 1992 under the guidance of Drs Chris Loock (CL) and Tim Oberlander (TO). The work of the SERT team and its members is recognized provincially and nationally for initiating pioneering research, education, and clinical service for several innovative public health ,prevention, education, and early intervention programs (including the BC Pregnancy Outreach Programs (POP's), YWCA Crabtree Corner & Sheway project development (CL), Rotary Kid's Outreach (CL &TO), Vancouver Inner City Developmental Outreach (Dr B. Fitzgerald), and the UBC Addiction Medicine (CL) and PBL Neurodevelopmental (Dr E.Michelson and CL) Curricula). The SERT team currently collaborates with the new Fir Square unit at BCWH for NAS issues and the Asante Centre for providing provincial standardized team assessments for FASD and other drug related concerns and is active with provincial and national clinical practice guideline development. Reviewer for a number of granting agencies and journals, and have been consultant to BC and Canadian Coordinating Offices of Health Technology Assessment. Former coordinator of residency training in developmental pediatrics.  Member of the Executive Committee of the Developmental Section of the Canadian Pediatric Society, and liaison of the section to the CPS Psychosocial Committee.  Doreen McConnell Harry Baker Sunny Hill Staff Physician Gordon Matthews Preventorium Pediatric TB sanatorium GF Strong Clinic for children with cerebral palsy Cerebral Palsy Clinic Princess Margaret's Children's Village Hospital School for physically disabled Clinical work with infants and children exposed to drugs and/or alcohol. Coordinator of outreach developmental program to Vancouver inner city schools Leadership role in resident teaching in Developmental Paediatrics Sunny Hill Hospital for Children Crippled Children’s Hospital Neurological Centres Intrathecal Baclofen Program Designated a Long Term Rehabilitation Hospital 8 bed in-patient unit established Community based care Ted Cooke George Hahn Shriner’s Gait Lab 1950 First Cerebral Palsy Clinic, New Westminster Jill Houbé Dr. Hahn is a Paediatric Physiatrist. He is a Clinical Associate Professor within the Departments of Medicine and Paediatrics, specifically within the Divisions of Physical Medicine and Rehabilitation and Developmental Paediatrics at UBC. His interests are in the realms of transition of the adolescent with congenital or acquired neuromusculoskeletal impairments towards maximal adult independence and also in the area of the natural history and outcome of childhood acquired brain trauma or disease. He is former Medical Director of the G.F. Strong Rehabilitation Centre. Rob Hill Jim Carter Hartman House Group home for the severely disabled Child Abuse Program Sunny Hill Health Centre for Children Neonatal Abstinence Syndrome Program Expansion for rehabilitation services, emphasis on outpatient services, respite care Population Paediatrics Health Policy Epidemiology Research in health care delivery Research in health policy (MPhil and PhD[cand] in Policy Analysis) and health services (Robert Wood Johnson Clinical Scholar) for high risk infants and children with special focus on the effect of health system structure on neonatal population outcomes. Policy research examining developmental service delivery in school settings. Associate faculty, Centre for Healthcare Innovation and Improvement Associate researcher, UBC Consortium for Health, Intervention, Learning and Development Project (CHILD) Block chair, Growth and Development Block, Patient-Based Learning Clinical work in Newborn Follow-Up Clinic and on-call service at Sunny Hill Health Centre in-patient ward Sunny Hill Seating Centre 1970 Jonathan Down Augmentative Communication Technology Program Associate member of the Division of Developmental Paediatrics at BCCH, and Clinical Faculty appointment at UBC. Developmental Paediatrician at the Queen Alexandra Centre for Children’s Health, Victoria, and provides services throughout Vancouver Island under the newly formed Health Authority. Northern Outreach Services Neuromotor Program Clinical Fellowship in Developmental-Behavioral Paediatrics based at Sunny Hill Health Center for BCCH completed in 1995. This was the first Fellowship position in Developmental-Behavioural Paediatrics, and Dr Down could well be described as a "guinea pig". Fortunately he was at the University of British Columbia. Master’s Degree in Health Care and Epidemiology not sacrificed for his efforts. Christine Chambers 2003 1953 Health Services Research Steve 1990 Faculty member, Department of Psychology at BCCH Faculty member, Centre for Community Child Health Research Clinical care of children with chronic medical conditions and their families. Research examines developmental and social influences on children’s pain, including family influences in pediatric chronic pain and disability and pain measurement in children. Career awards from CIHR and the Michael Smith Foundation for Health Research and operating funds from CIHR and the Hospital for Sick Children’s Foundation. Recipient of the 2002 Canadian Psychological Association’s President’s New Researcher Award. Wellington Ron Barr Evidence Based Medicine Clinical work focusing on infants and children with a variety of neurodevelopmental disorders, as well as on-call service for the Sunny Health Centre in-patient ward. Director of a new autism initiative funded by the province in the summer 2002 at C&W which involves working with the This work in autism is the model for service development for health authorities to develop regional expertise. other areas of developmental behavioural paediatrics in BC Director of the Centre for Community Child Health Research Both clinical work and research focusing on the needs of infants and young children. Studies on the biological and behavioral determinants of behavior, including pain, behavioral state and crying, cognition and memory, as well as for the outcomes of early clinical manifestations of these behaviors for later development (temperament, reactivity). Member of the Human Development Programme of the Canadian Institute for Advanced Research, and former Fellow of the Center for the Advanced Study of Behavioral Sciences at Stanford in 2000-2001. Former Associate Editor of the leading journal Child Development and on the editorial boards of more than a dozen pediatric, child development and anthropology journals. Currently President of the Society for Developmental and Behavioral Pediatrics. Chair of the “Developmental Committee” of the Canadian Centre of Excellence Network focused on dissemination of understanding of current knowledge on early child development.