Fetal Alcohol Spectrum Disorder Cross-ministry results
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1 Fetal Alcohol Spectrum Disorder Cross-ministry results Download the report at: January 27 th, 2017
2 FASD panel Dr. Christine Werk Research scientist, PolicyWise for Children & Families Dr. Darcy Fleming Team Lead, Performance Management, Ministry of Community and Social Services Dr. Gail Andrew Clinician, Alberta Health Services Janice Penner Manager, Disability Supports Program Development, Ministry of Community and Social Services
3 Fetal Alcohol Spectrum Disorder (FASD) Data in our study Health diagnostic codes (emergency room, other ambulatory care, and hospitalizations) Family Support for Children with Disabilities (FSCD) service Missing data Diagnosed before 2005/06 and no FSCD service Online reporting system Physician claims
4 Fetal Alcohol Spectrum Disorder (FASD) Context FASD at any point in the study for this report FASD services increased over the study years 3,025 with a diagnosis and/or an FASD-related FSCD service
5 Human Services Region Percentage of Albertans aged 0 to 25 with FASD by Human Services region
6 Socio-economic status Percentage of Albertans aged 0 to 25 with no FASD by socio-economic status in 2010/ % 21% 2 18% 18% Lowest No FASD Highest
7 Socio-economic status Percentage of Albertans aged 0 to 25 with FASD by socio-economic status in 2010/ % 2 22% 19% 11% 7% Lowest FASD Highest
8 Educational achievement Percentage of Albertans in grades 3 to 12 meeting or exceeding educational expectations over time 10 8 FASD No FASD 6 4 2
9 Mental health service Percentage of Albertans aged 0 to 25 with mental health service use over time 6 FASD No FASD 4 2
10 Child Intervention services Percentage of Albertans aged 0 to 22 accessing Child Intervention services over time 6 FASD No FASD 4 2
11 Income Support recipients Percentage of Albertans aged 18 to 25 accessing income support services over time 4 FASD No FASD 3 2 1
12 Criminal offences Percentage of Albertans aged 12 to 25 with criminal offences over time 4 3 FASD No FASD 2 1
13 Family Support for Children with Disabilities Percentage of Albertans aged 0 to 17 accessing Family Support for Children with Disabilities (FSCD) services over time 6 FASD No FASD 4 2
14 Assured Income for the Severely Handicapped Percentage of Albertans aged 18 to 25 accessing Assured Income for the Severely Handicapped (AISH) services over time 6 FASD No FASD 4 2
15 Persons with Developmental Disabilities Percentage of Albertans aged 18 to 25 accessing Persons with Developmental Disabilities (PDD) services over time 6 FASD No FASD 4 2
16 Next speaker Dr. Darcy Fleming
17 Family Support for Children with Disabilities Percentage of Albertans aged 0 to 17 accessing Family Support for Children with Disabilities (FSCD) services over time 6 FASD No FASD 4 2
18 Educational achievement Percentage of Albertans in grades 3 to 12 meeting or exceeding educational expectations over time Percentage of Albertans in grades 3 to 12 meeting or exceeding educational expectations over time 10 8 FASD No FASD 10 8 FSCD
19 Socio-economic status Percentage of Albertans aged 0 to 25 with FASD by socio-economic status in 2010/11 6 Percentage of Albertans aged 0 to 17 with FSCD services for developmental conditions/impairments by socio-economic status in 2010/ % % 19% 2 23% 19% 19% 19% 21% 11% 7% Lowest Highest Lowest Highest FASD FSCD- Developmental conditions/impairments
20 Child Intervention services Percentage of Albertans aged 0 to 22 accessing Child Intervention services over time Percentage of Albertans aged 0 to 17 accessing Child Intervention services over time 6 FASD No FASD 6 FSCD
21 Offences Percentage of Albertans aged 12 to 25 with criminal offences over time Percentage of Albertans aged 12 to 17 with criminal OR provincial offences over time 4 FASD No FASD 4 FSCD
22 Students with special needs Percentage of Albertan students aged 2.5 to 19 with special needs over time Percentage of Albertan students aged 2.5 to 17 with special needs over time 10 8 FASD No FASD 10 8 FSCD
23 Assured Income for the Severely Handicapped Percentage of Albertans aged 18 to 25 accessing Assured Income for the Severely Handicapped (AISH) services over time Percentage of Albertans aged 18 accessing Assured Income for the Severely Handicapped (AISH) services over time 6 FASD No FASD 6 FSCD
24 Persons with Developmental Disabilities Percentage of Albertans aged 18 to 25 accessing Persons with Developmental Disabilities (PDD) services over time Percentage of Albertans aged 18 accessing Persons with Developmental Disabilities (PDD) services over time 6 FASD No FASD 6 FSCD
25 Clinical Expert Perspective Dr. Gail Andrew Medical Director Glenrose FASD Clinical and Research Services Policy Wise 2017 DATA Clinical Implications and Future Research
26 What the data tells me based on 20 years of FASD practice! Data supports FASD intuitive knowledge from caregivers, clinicians and individuals living with FASD Complexity Involves all systems of care Lifelong disability Need for collaboration, communication and coordination of care: 3 C s Need for shared case conferencing and decision making with identification of MRP Need for transition planning to adult services
27 Prevalence Data in Sample: 05/06-10/11 <0.2% diagnosed with FASD, n = 3,025 in study period Limitations: Sample capture (ORS data not included) Based on 2005 Canadian Guidelines Before Physician diagnostic code training on Diagnostic capacity not meeting needs but with the CMC Network model: multiple DX clinics close to home community to connect and educate local resources: best in Canada! Who accesses DX: stigma, awareness, kids in care, SDOH Who does NOT come for DX: not asking the PAE history, ADHD clinic door, bias Age limitations in DX: preschoolers, adults
28 High Service Use Across all Systems Special education needs 51-57% vs 8% at any point across the 6 years Lower educational achievement 38-41% vs 83-85% Receiving 2 or more government services 51-56% vs 4-5% Child intervention services 32-37% vs 1-2% FSCD-FASD supports 24-26% vs 1% (lower as kids in care do not access FSCD but are supported by children s intervention services) Enrolment in post secondary 3-5% vs 21-24% Criminal offences 13-17% vs 7% High health care costs 64% vs 17% High mental health needs 74% vs 14% Access to adult support services AISH 24-38% PDD 17-3 vs 0.5-1%
29 What does this service use reflect? FASD results from brain damage from prenatal alcohol exposure that affects core areas of function: learning, behavioral and emotional regulation, judgment and other executive function, functional communication that leads to maladaptation; care giver or school is often the first red flag Often compounded by toxic stress in the pregnancy and early years (Prevention opportunity!) Services in brain damage model are needed in every sector including supports for caregivers and across the lifespan Ongoing needs: identify, implement and evaluate evidence based best practices, improve access to services with service navigation, including transition to what in adult services
30 Child Intervention Services Over representation of individuals with FASD (32-37%) accessing this service (vs 1-2%) why? Link in SDOH Child maltreatment/inadequate care and use of alcohol in pregnancy are linked to SDOH why women drink? poverty and multigenerational trauma (Prevention opportunities!) Multiple moves in FASD (6-7% more than 2 moves) may be linked to foster care moves which can impact developing a healthy attachment relationships (Prevention opportunity!) More FASD in lower income (39-41%) may be related to biological family of origin but also the foster system or burden of care on the family: need to explore this further
31 It is not Healthy to have FASD! FASD is a whole body disorder ARBD (Alcohol Related Birth Defects) vision, cardiac defects, hearing, immune system, sleep patterns, multiple neuroreceptor systems Early trauma compounds health through ACE study data Asthma (16.5% vs 8.3%) poverty, smoking exposure, housing issues SDOH, impact of PAE on immune system Increase in diabetes may reflect over representation of FN in sample with increase genetic risk or medication effect of atypical psychotic drug use (CAMSE). Need long term data on life expectancy in FASD
32 Mental Health and FASD 45-5 of individuals with FASD accessed a mental health service (excluding psychologists/social workers) 2015 Canadian Guidelines for FASD DX look at domain 10 of affect regulation to be considered in Dx criteria Ongoing dilemma is whether MH is relater to PAE or adverse life experiences or both? Service delivery needs to be trauma informed and are we there yet in mental health service delivery? Questions and gaps: access to mental health services at key points across the life span especially in early years and in transition to adult services
33 Next Steps Alberta leads/rocks! across the country in all areas in FASD but that is not enough; KT opportunities spread the word Data collection with the Canada FASD Research Network Database: DX profile and recommendations Compare data from other disability populations PRRS: ASD & CP CAPHC Data informs where we have come from but also where we need to go: new research and evaluation questions, identifying best practices Longitudinal data Qualitative data: the lived life experiences
34 Next speaker Janice Penner
35 A Cross-Ministry Perspective Data: a tool for informed-thinking Policy and Practice Responsibility Program Implications
36 A Cross-Ministry Perspective Policy and Practice Data as a tool Data raises questions Data tells us: We are on the right track We may need to shift focus We may need to change practice Percentage of Albertans aged 0 to 25 with mental health service use over time 6 FASD No FASD 4 2
37 A Cross-Ministry Perspective Responsibilities Accountability Measures Progress Analysis Interpretation Question Outcomes Feedback Loop Respect A higher proportion of young Albertans living in the Northwest and North Central regions had FASD than in other Alberta regions.
38 A Cross-Ministry Perspective Program Implications Achievements PCAP Gaps Prevention Conversation Early identification of FASD Educational achievement Priorities Knowledge and capacity development Percentage of Albertans in grades 3 to 12 meeting or exceeding educational expectations over time Albertans will be better served because government will understand at-risk populations and areas of need in the province FASD No FASD
39 mobilizing evidence to inform policy Download the report at:
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