A bold strategy for autism spectrum disorder and intellectual disability

Transcription

Developed with
the support of
McKinsey &
Company
A bold strategy for autism spectrum
disorder and intellectual disability
October, 2014
© Miriam Foundation
CONFIDENTIAL AND PROPRIETARY
Any use of this material without specific permission of the Miriam Foundation is strictly prohibited
1
Table of Contents
1. Executive Summary
2. Introduction to the Miriam Foundation
3. The need to act:
 Autism Spectrum Disorders and Intellectual Disabilities:
Prevalence and trends
 The life journey of individuals with an ASD and/or ID and their
families
4. Introduction to the McKinsey study:
 Mandate and process
5. Study Findings
6. See Things My Way:
 Vision, campaign and short-term priorities
7. Acknowledgments
8. Bibliography
2
2 2
1. Executive Summary
▪ The Miriam Foundation is dedicated to serving individuals with Autism Spectrum
▪
▪
Disorders (ASDs) and Intellectual Disabilities (IDs) and has a proven track record in
doing so.
Individuals with an autism spectrum disorder (ASD) or an intellectual disability (ID)
have lifelong conditions that 40 years ago would have either gone unrecognized or
would have sent them to institutions. Today, thanks to significant developments in
early intervention therapy for young children, specialized education and work
programs, and adapted residential services, these individuals can live long and
productive lives if access to the right services is made possible. Collectively, we
need to make sure that happens.
150,000 Quebec residents live with an ASD and/or an ID. Those in need of lifealtering services currently face a succession of long waitlists, incomplete
information, variable quality of services and financial difficulties which can ruin
both them and their families.
3
3 3
1. Executive Summary (continued)
 Miriam Foundation has undertaken a careful study of the service gaps that individuals and
their families face throughout their lifetime. After reviewing 225 documents and conducting
55 interviews with experts and stakeholders, a fact-based picture of the situation across
Quebec has emerged:








▪
Diagnosis: Over 1,000 children are waiting up to 2 years for a diagnostic evaluation.
Early childhood intervention: Over 800 children are waiting on average 1 year, but up to 3 years for early intensive behavioural
intervention (EIBI), a critical service they are only eligible for before age 6.
Education: Schools do not have sufficient specialized programs (more pronounced for certain sub-populations), trained teachers
or dedicated professionals for this growing student population.
Employment or daytime activities: 500 adults are waiting up to 4 years for employment programs and over 300 adults are
waiting up to 3 years for daytime activities.
Residential services: Adults who need a place in residential homes face wait lists of up to 11 years.
Parent support and guidance: Few parents have ready and continuous access to service navigators to guide them through the
complicated ASD/ID system, and when they do have access, many of them lack ASD/ID-specific training.
Parent respite: Only 8% of parents have access to specialized respite resources and current subsidies for respite are insufficient
to meet families’ needs.
Specialized medical services: The medical and dental establishments have very few practitioners willing or able to treat
individuals with an ASD or an ID despite their high rate of co-morbidities and health issues.
We want to work with stakeholders across sectors to change this by:
– Intervening directly to fix the most pressing issues.
– Convening key shapers together in a collaborative effort to advocate for changes.
– Assess progress as well and support applied research to create accountability.
4
4 4
2. The Miriam Foundation
5
The Miriam Foundation’s mission is to help children and adults with
an ASD and/or an ID lead fulfilling lives
What we do
What we support
Founded in 1973, the Foundation is involved in a
wide range of activities

Funding programs that help increase
independence and quality of life in
children and adults with an ASD/ID.

Supporting recreation and leisure activities
through which people have the opportunity
to meet friends and develop skills and
competencies.
Providing direct funding and support to
families.




Bringing the people who are touched
by ASD/ID together to advocate for
better care and better services (e.g.
task force to pass Bill 21).
Creating a best practices document for
doctors and patients.
Supporting higher education programs
through the funding of a post-doctoral
fellowship in developmental psychology
at McGill University.
Miriam Home and Services:
One of Quebec’s leading public
organizations providing early
intervention, rehabilitation and
residential services, and
community and work integration
for individuals with ASDs and IDs.
Gold Centre: A not-forprofit centre that offers direct services
to individuals, and education and
training to professionals, paraprofessionals and families. It also
supports research to help improve
diagnosis, treatment and interventions.
Lou Greenberg-Miriam Association:
A charitable organization that
purchases and maintains community
homes adapted to meet the changing
needs of adult residents living with
ASDs and IDs. The association also
manages the Lori Black Community
Centre that serves as the head office
and client hub for Miriam Home and
Services.
6
6 6
We help individuals with autism spectrum disorders, intellectual
disabilities, and global developmental delay and their families
Intellectual
Disability1 (ID)
▪ Deficits in general mental
abilities (IQ<65-75)
▪ Impairment in everyday
conceptual, social, and
practical functions
~74,000
individuals
in Quebec
▪ Occurs during the
developmental period
Autism Spectrum
Disorder (ASD)
▪ Persistent impairment in social
communication and
interactions
▪ Restricted, repetitive patterns
of behaviours, interests, or
activities
~76,000
individuals
in Quebec
and growing
1 in 100 individuals are
diagnosed with an
intellectual disability in
North America1
1 in 68 children are
diagnosed with autism
in North America2
ASD is 7 times more
prevalent in children
than diabetes, 8 times
more prevalent than
cerebral palsy, and
41 times more prevalent
than cystic fibrosis
▪ Present from early childhood
1 The diagnosis of global developmental delay is assigned for a period of time when the clinical severity level cannot be reliably assessed during the childhood
2 Center for Disease Control and Prevention, Prevalence of Autism Spectrum Disorders, 2010 data
SOURCE: DSM-5; Public Health Agency of Canada; Ontario Federation for Cerebral Palsy; Cystic Fibrosis Canada
7
7 7
3. The need to act:
 Autism Spectrum Disorders and Intellectual Disabilities:
Prevalence and trends
 The life journey of individuals with an ASD and/or ID and
their families
8
Dramatic increase in ASD prevalence among children will translate
in increased demand for services
Change in prevalence rates
Cases per number of children
1/150
1/150
1/125
1/110
1/88
1/681
Impact is felt on
diagnostic and early
childhood intervention
wait lists
Demand for services
in schools will grow
tremendously in the
next 10 years
1992
1994
1996
1998
2000
2002
Pressure in the
system will continue to
build at employment
and day activities as
well as residential
Average birth year of children in study
1 Preliminary investigation from the CDC’s Autism and Developmental Disabilities Monitoring Network Surveillance released March 28, 2014
SOURCE: Statistics Canada, US CDC Autism Data and Statistics combining data from all ADDM Network sites 2000-2008
Source : McKinsey & Company report 2014
9
9 9
PREVALENCE RATES AND SEGMENTATION
ASD prevalence studies show an increase of 71% over 10 years, while
there is no clear consensus on the trend of the ID prevalence rate
Selected main references of prevalence rates1
Prevalence
ASD
Year
Source
1/165
2005
Fombonne
1/100
2012
DSM-5;
Fombonne
1/88
2012
US
CDC2
Higher prevalence in children than in
adults; best prevalence estimates at
age 8
Many factors can
explain the increase in
the ASD prevalence rate
▪ Increased public
awareness
▪ Differences in
ascertaining diagnosis
▪ Revised diagnostic
criteria
▪ Improved diagnostic
tools
ASD prevalence rate - CDC, 2000-2008
1
150
150
2000
1
150
150
2002
1
125
125
2004
1
110
110
1
88
71%
2006
2008
Many factors can
explain the wide range in
the ID prevalence rate
▪ New diagnosis criteria
i.e. support needed vs.
IQ based
▪ Reduction in genetically related ID with prenatal screening
▪ Improved diagnosis of
an ASD instead of an
ID
Range of ID prevalence rate
ID
3/100
2013
Qc Auditor Gen.
1/100
2013
DSM-5
0.5/100
2006
OPHQ
3/100
1994
DSM-IV
Approximately 40% of individuals
with an ASD will also have an ID
1/33
1/33
1/100
1/200
1994
2006
2013
1 Proportion of a population found to have a condition at any point in time
2 In April 2014, CDC released new 2010 data showing a prevalance rate for an ASD of 1/68
SOURCE: DSM-5; US CDC; Interagency Autism Coordinating Committee, E. Fombonne, interviews; Quebec Auditor General
10
10 10
THE JOURNEY OF AN INDIVIDUAL WITH AN
ASD OR ID
General Psychosocial Services
Education and work
Specialized services
Medical
Supervision/
accompaniment
Day Care
Intervention
Services
Early
intervention
Age
1
Work
Residential
Leisure
13
Leisure
18
Long-term care
Residential
Medical
specialists
Leisure
5
Work
Family Medicine
21
Leisure
45
65
Parents are the natural caregivers; they need support, education and respite services across the life span
Education
Pediatrician
Pediatrician
Education
Pediatrician
Dentist
Assessment/
diagnosis
22/12/2014
Supervision/
accompaniment
Therapeutic Services
Supervision/
accompaniment
Family Medicine
Dentist
Therapeutic Services
Dentist
Dentist
Intervention Services for
Adults
11
Geriatric
Intervention Services for
Adults
11 11
4. Introduction to the McKinsey study:
 Mandate and process
12
We conducted over 55 interviews and reviewed over 225
documents to understand the current landscape and critical
service gaps
7
Interviews with
key academics
▪ Sick Children
▪ Mtl Children
▪ ABA Clinic
▪ Gold Center
▪ Ste-Justine
Interviews with
Hospital
health
▪ CSDM
professionals
▪ Montreal
General Hospital
▪ Douglas Hospital
▪ Clinique des
troubles complexes
de la Montérégie
▪ Holland-Bloorview
Rehabilitation
Centre
• Define strategic vision and
priorities to address gaps and
improve services
25+
Interviews with
key
stakeholders
• Design high-impact projects and
identify potential partners
Literature
reviewed
~225
▪ Academic research
▪ Clinical studies
▪ Government reports
▪ Action plans
22/12/2014
▪ McGill University ▪ York University
▪ U of Alberta
▪ Nisonger Ohio
▪ U of Calgary
▪ Queens University
▪ UQAM
• Study the current landscape
and learn from innovative
models
12+
# of organizations interviewed
or documents reviewed
▪ Annual reports
▪ Surveys
▪ Guides and
evaluation tools
▪ CSSS Montagne
▪ FQCRDITED
▪ CRDITEDs
▪ FQA
▪ Giant Steps
▪ Autism Community Training BC
▪ American Assoc. of Intellectual
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
& Developmental Disabilities
Emergo
Geneva Center
Surrey Place
ATEDM
Centre Francois-Michelle
Fond Y. Lamarre
CRDITED de la Montérégie
Agence SSS Mtl
10 parents incl. 2 focus groups
Ecole Lajoie
Revanou
Centre Philou
Thomas House, Netherlands
MP CPC
13
13 13
5. Study Findings
14
Note About Study Findings
We have pieced together available evidence from peer
review journals, grey literature, and many interviews. All
of this together represents the best available data we
could find within the scope of this study. Some of the
data represents our best estimates based on the
triangulation of multiple sources. Our findings in no way
imply the availability of perfect data and we sincerely
hope that much-needed research continues to evolve in
this domain. Furthermore, we welcome any direction
from our stakeholders with respect to data that may not
be included here-in or for which updates may now be
available.
15
15 15
The levels of severity or required support vary substantially along
the ID and ASD spectrums
Levels of severity or required support
Proportion Co-morbidity
Mild - With sufficient support, can meet elementary academic levels or
beyond, is self-sufficient, and can live independently with minimal support
for more complex life decisions
ID
Moderate - Adequate communication skills, but needs support with social
cues and decisions, can perform most self-care activities, may achieve
independent employment requiring limited conceptual or social skills, and
typically lives in group homes
~85%
▪
~20-40% of
individuals will have
challenging
behaviours
throughout their life
▪
3 to 4 times higher
rates of co-morbid
disorders (e.g,
cerebral palsy,
epilepsy) than in
general population
~ 10%
Severe - Very basic communication skills, requires daily assistance with self- ~ 3-4%
care activities and safety supervision, and lives in a residence with full support
Profound - Communication skills are limited, is dependent upon others for
all aspects of daily care, and needs 24-hour care and support
ASD
~ 1-2%
Requiring support - Able to communicate in full sentences, but difficulty
initiating social interactions, switching between activities, as well as
organizing and planning
~ 30%
Requiring substantial support - Marked deficits in verbal and non-verbal
social communication skills with limited social interactions and difficulty
coping with change and focus
~ 65%
Requiring very substantial support - Severe deficits in verbal and nonverbal social communication skills with rare interactions with others and
restricted behavior markedly interfering with functioning in all spheres
~ 5%
▪ ~10-20% of
individuals will have
challenging
behaviours
throughout their life
▪
70% may have one
co-morbid mental
disorder and 40%
may have 2 or more
SOURCE: DSM-5; Interviews; Willaye and Magerotte 2008
16
16 16
Given the broad spectrum, it is critical to understand
the different levels of functionality by type of diagnosis
PRELIMINARY ESTIMATES
Segmentation of individuals with ASD and/or ID in Quebec
Average number of individuals in thousands, 2013
Diagnosis
Segment C:
Require support
throughout their
lifetime (EIBI for
ASD is critical)
ASD only
Potential level of functionality
Segment A: Mild
form of ASD (e.g.,
Asperger), can
integrate normal
environments with
a shadow or other
support
ASD with ID
ID only
TOTAL
High
functionality
20
2
63
85
Moderate
functionality
31
18
7
56
Low
functionality
2.2
1.3
3
7
Serious
challenging
behaviours
0.5
0.2
1.4
2.1
TOTAL
54
22
74
150
An individual’s functionality level may fluctuate throughout their lifetime
Segment B: Highly
functional, requiring
targeted childhood
stimulation but able to
integrate employment
with support
Segment D:
Specialized care
required throughout
lifetime for daily living
(e.g. dressing,
feeding, bathing)
Segment E:
Behavioral issues
require very
substantial
supervision, often at
risk of being rejected
from school system
SOURCE: DSM-5; US Center for Disease Control and Prevention; Statscan; Interviews; McKinsey analysis
17
17 17
Case examples of each segment (1/2)
A ASD
High functionality
ID
B High functionality
with mild ID
ASD and/or ID
concurrent
C disability
Moderate
functionality
Jonathan was diagnosed with a mild form of ASD (what we know as Asperger
syndrome). His IQ is in the normal range (approximately 100) and he has no language
delay. However, Jonathan has difficulty adjusting to social norms and developing
relationships, and has had issues at work related to this. He has an exceptional ability
to identify patterns across various different settings, and is very good at drawing 3D
models. He likes routine and becomes anxious when changes in his environment
occur. He needs support with social skills coaching and is using medication for anxiety.
Jonathan lives alone in a small apartment located close to his parents and has recently
met a woman at work with whom he shares similar interests.
Anita has a mild ID. Her adaptive behaviour shows that she has difficulty
understanding concepts. Anita graduated from a modified high-school curriculum, and
successfully completed a work-integration stage. Her IQ is just under 65. She can
communicate verbally, and expresses her needs well. But, she requires supervision for
budgeting and around sexuality, as she can be easily taken advantage of by men in
her neighbourhood. She has a day job requiring limited conceptual knowledge. Anita
lives in an apartment, but her parents help with managing her budget.
Claire has an ASD and requires substantial support. She has very limited
communication skills and needs substantial support with social cues and life decisions.
She can perform most self-care activities. She communicates using a PECS system,
and at times, her iPad. She lives in a residential intermediary (RI) home with 4 other
people, managed by staff, and attends daily activities at the local community center. She
has one topic of interest (i.e., dolls) and tends to speak repeatedly, and show interest in
pictures of dolls. She enjoys looking at cartoons on YouTube, with the use of an iPad.
SOURCE: N. Garcin; Dudley, C. and Emery, J.C., The Value of Caregiver Time, SPP Research Papers, U. of Alberta, 2014; McKinsey
18
18 18
Case examples of each segment (2/2)
Severe ASD
and/or severe,
D profound ID
Low functionality
with or without
physical disability
George is a profoundly affected individual with both an ASD and a concurrent ID.
He has significant limitations in all domains of adaptive behaviour (conceptual,
social, and practical domains) with an IQ ranging between 35 and 45. He has
physical co-morbidities and uses a wheelchair. George is non-verbal and noncommunicative, has significant self-injury behaviours, and wears a helmet to protect
his ears and head. He requires very substantial support for all aspects of daily care,
such as bathing and eating
ASD and/or ID
E with serious
challenging
behaviour
Daniel is a young adult with a severe ID. His IQ ranges between 45 and 59. Daniel
is non-verbal and non-communicative. Recently, he was moved to a specialized
continuous support residence (RAC), because of his serious challenging behaviour.
He has significant self-injury behaviours and now wears a helmet to protect his ears
and head. Daniel requires very substantial support due to his aggressive behaviour
SOURCE: N. Garcin; Dudley, C. and Emery, J.C., The Value of Caregiver Time, SPP Research Papers, U. of Alberta, 2014; McKinsey
19
19 19
Out of the 150K individuals with an ASD and/or an ID in Quebec,
only ~80K of them receive services, leaving 46% underserviced
Individuals with an ASD
or an ID based on prevalence
Individuals receiving services
from major service providers
Number of users1, 2012
Number of individuals, 2013
Segment A
20k
Segment B
63k
Segment C
58k
Segment D
7k
Segment E
2.1k
~150k
~70k (46%) under
serviced
▪ Turning to private
▪
sector or
community
organizations
Not needing
services?
27k
CSSS
30k
CRDITED
11k
~5-10k not
identified
Schools
1,065
Child dev.
center/ Clinic
~80k
1 Does not take into account overlap of users
SOURCE: Interviews; Quebec Auditor General,; MSSS Form AS-485; MELS; McKinsey analysis
20
20 20
Among those ~80K individuals receiving services, 75% of them require a
medium to a high level of support for a total of 60K
ESTIMATES
Segmentation of individuals with an ASD and/or an ID in Quebec
Average number of individuals age 0-72 in thousands, 2013
Diagnosis
Includes undiagnosed
individuals
Potential level of functionality1
High functionality
ASD only
A
20
Mild ID / Requiring
support
Moderate functionality
Moderate ID / Requiring
substantial support
31
Low functionality
Severe, profound ID /
Requiring very
substantial support
D
Serious challenging
behaviours
Requiring very
substantial support
E
TOTAL
2.2
TOTAL
ASD with ID
ID only
C
B
2
18
1.3
Level of support
No support
 People not receiving
public services
 Total of 70K people
63
7
3
85
Low support
 ~25% of people
receiving services
56
Medium support
 ~60% of people
receiving services
7
High support
0.5
0.2
1.4
54
22
74
 ~15% of people
receiving services
2.1
~150
1 Total numbers have been rounded to the nearest decimal
SOURCE: Support intensity scale; Interviews; McKinsey analysis
21
21 21
Critical transition points and transversal needs across the lifespan
of a person with an ASD or an ID
1
Diagnosis
Access to a diagnosis by a
qualified interdisciplinary team
within 3 months
of concerns
Age
1
2
3
5
School
Integration into the right school
setting with quality education
and therapist
continuity inside and
outside of school
5
Residential services
Transition from parents’ home
to the right residential
environment
20
2
Early childhood intervention
Access to early, evidencedbased quality intervention adapted to
the child’s needs
4
6
Parent support , guidance
Guidance through their child’s
life to navigate
services and
financial support
7
45
Employment and/or day activities
Proper planning and smooth integration
from school into adapted and
fulfilling employment and/or
day activities
Parent respite
Variety of respite
options adapted
to each family’s needs
8
Specialized medical care
Access to specialized
medical services
(e.g., dental, family
medicine, gynecology)
22
22 22
Service gaps, both in terms of access and quality/intensity, vary
substantially for each segment at every transition point
ILLUSTRATIVE
Diagnosis
Time needed to access service
Segments
1
Early
childhood
intervention
2
School
Over 1 year
0.5-1 year
< 0.5 year
Low
Medium
High
3
Employment
and/or day
activities
4
Residential
services
Parent
support,
guidance
65
Parent
respite
7
Specialized
medical care
8
A
B
C
D
E
Quality of service
A
B
C
D
E
SOURCE: Interviews; Quebec Auditor General; FQCRDITED; CRDITED Form AS-485 2013; reports from Protecteur du Citoyen 2009 and 2012; McKinsey analysis
23
23 23
LIFE PATHWAY AND SERVICE GAPS
Time needed to access services: a comparison across
key transition points and transversal areas
Diagnosis
1
Segments
A
20K
B
63K
Waiting 0.2-1
year for
pediatrician
referral
Once referred,
>1000 children
waiting 0.3-2
years for
diagnosis from
clinic/center
Early
childhood
intervention
2
School
3
Less demand
because often
diagnosed later
~250 children
aged 0-5 waiting
0.2-1.2 year for
early intervention
No wait time for
children
attending
regular or
special classes
in public
schools
Total wait time of
up to 0.5-3 years
C
58K
D
7K
Due to more
apparent signs,
pediatrician
referral is faster,
hence reducing
wait time to 0.3-2
years for
diagnosis
Segments C to E
included in >
1,000 children
2.1K waiting for a
diagnosis
E
Employment
and/or day
activities
Residential
services
Find
employment, but
can have
challenges
Live in a natural
environment
i.e., autonomous
apartment or
with parents/
family
4
~495 adults with
an ID wait 0.52.2 years and
~125 adults with
an ASD wait 0.34 years2
Limited
availability of
jobs
>8801 children
aged 0-5 waiting
for 0.3-21 years
for EIBI or other
intervention
0-3 years of
wait time for
private
specialized
school
Up to 300
students on
wait list of some
private schools
~312 adults with
an ASD and/or
an ID wait
between 0.4-2.8
years for day
activity programs
5
Parent
support,
guidance
6
(current access
mostly in crisis
situation)
0.5-1 year
Over 1 year
Parent
respite
7
Less demand
from high
functional people
with an ASD
Access to a
service navigator:
~1,400 people
waiting between
1-43 years for
RNI
< 0.5 year
 Overall, 75% of
parents have
access
 50% of parents
have access
quickly
 25% of parents
have access,
but with long
wait list
Less wait time
for RAC/RIC
Many weekend
and summer
camp respites,
but very few
caretaking and
emergency
support options
Limited access,
e.g., 4 wkds + 1
week per year
For specialized
respite4:
 Only 8% of
parents have
access
 When
available, 50%
of parents
face long wait
times
Specialized
medical care
8
Use services from
regular medical
centers
Greater medical
needs due to
higher % co-morbid
conditions
Limited access
especially for
adults, very few
physician or
specialist ready to
receive clientele
(current access
through personal
contacts)
ID have avg. 2.3
unrecognized
conditions and 2.7
unmanaged
conditions
1 Does not include children receiving only 1hr/week of service but waiting for EIBI at 20hr/week; Auditor General reported up to 3-year-long waits
2 High range mostly driven by CRDITED Montreal with an ASD 22-44 age group waiting for 8 years, data to validate
3 Up to 11 years based on the Auditor General report
4 Respite offered to individuals with specific conditions requiring a high level support (e.g. serious challenging behaviour, wheelchair)
SOURCE: Interviews; Quebec Auditor General; FQCRDITED; CRDITED Form AS-485; Reports from Protecteur du Citoyen 2009 and 2012; McKinsey analysis
22/12/2014
24
24 24
High
Quality of service: a comparison across transition
points and transversal areas
Diagnosis
1
Early
childhood
intervention
Quality functions
SegAccuracy of
Intensity of
ments diagnosis
services
A
20K
B
63K
Good accuracy
of diagnosis
C
High proportion
58K from
D
7K
E
2.1K
interdisciplinary
or
multidisciplinary
teams
2
School
3
Employment
and/or day
activities
4
Residential
services
Ratio of qualified
Opportunity to
Fulfill individual’s
resources per child develop skills
specific needs
Regular classes :
Disagreement on  Teachers:
Medium
type and intensity
1 per 29-34
opportunity to
of intervention
 Professionals:
develop due to
needed
Living in natural
1 per 14
unadapted work
environment
environments
Special classes:
▪ Teachers:
1 per 6-15
Medium quality
▪ Professionals:
1-5 hrs/week of
of employment
1 per 14
early intervention
opportunity :
 Limited nb. Of
RTF and RI
Lack of training
resources to
residences meet
shadow
the general
No specific
needs, but
 Limited work
program for an
quality of care
opportunities
ASD and a mild
highly variable
ID
 Secluded work
based on home
settings
Avg 12.8 hrs/
manager
week vs. target
20hrs/week
Medium quality
Special schools:
of day activities:
 Teachers:
• Lack of
1 per 1-10
training
RAC/RIC meet
specific needs
 Tailored
• Insufficient
program for
outings
an ASD and
an ID
Parent
support,
guidance
Medium
Low
65
Parent
respite
7
Fulfill parent’s
specific needs
Fulfill individual’s
specific needs
Service
navigators are
generally seen as
ineffective :
“one size fits all”
approach mixing
groups of
different age and
functionality level
 No real
authority to
make things
happen
Some educators
lack training
 No ASD/ID
expertise
Specialized
medical care
8
Quality of services
Use services
from regular
medical centers
Occupational,
insufficient
outings
 Not recognized
by ASD/ID
professionals
Highly variable,
depends on the
individual
 Too large
workload
Medical staff not
trained to
intervene with
patients with an
ASD or an ID
 Not there at
critical point
such as
receiving
diagnosis
For specialized
respite, special
needs are met
SOURCE: Interviews; Quebec Auditor General; FQCRDITED; CRDITED Form AS-485; Reports from Protecteur du Citoyen 2009 and 2012; McKinsey analysis
25
25 25
1
Diagnosis: summary of key facts and main issues
Key facts
Main issues
Over 5,000 diagnostic evaluations for a
potential ID or an ASD are estimated to be
performed annually across Quebec
Wait times in Montreal have been increasing
Average number of months
12-24
Quotes
▪
Delayed
referral
6-12
▪
▪
Lack of
resources
2007
▪
2013
Wait times vary across regions
Average number of months, 2014
12-18
3-9
Unclear roles
and
responsibilities
▪
▪
Parents, daycare educators, and
teachers are unaware of signs and
behaviours to “watch for”
Some primary care physicians and
pediatricians have a “wait and see”
approach before referring for
diagnosis
– Parent
Funding allocations have not coped
with increasing demand, especially
from growing an ASD population
In some regions there is a lack of
experienced diagnosticians,
including trained psychologists,
psychiatrists, or audiologists
No clear roles and responsibilities
and process flow regarding
diagnosis between 1st and 2nd line
Multiple parallel diagnostic center
initiatives under development
0-3
▪
No common
standards
Bas-SaintLaurent
Laurentides
“My pediatrician
dismissed my
concerns regarding
my child’s social
behaviour.”
No common and uniform diagnostic
requirements between hospitals,
CSSS, CRDITED and school
boards
Montérégie
“ 80% of diagnostic
evaluations can be
easily performed.
Hospitals should
only deal with
complex cases.”
– DG CSSS
“I waste so much
time filling out the
different diagnosis
paper work required
from the school, the
CSSS, the CRDITED,
etc.”
– Head hospital
diagnostic center
SOURCE: Interviews; MSSS; Plan action Montréal 2009-2012; Québec Auditor General; McKinsey analysis; Protecteur du citoyen 2009
26
26 26
2
Early childhood intervention: summary of key facts and main
issues
Key facts
Key issues
▪
▪
Intensity of service provision varies
Intensity of EIBI interventions in CRDITEDs
Hours/week per child, 2012
20.0
-36%
12.8
Quotes
Disparity in
intensity
and quality
of EIBI
▪
▪
▪
Average
▪
MSSS Target
Lack of
resources
Waiting lists are too long
Number of
people1
Adapt/
readapt
Total
▪
▪
Waiting list data, 2012
EIBI
▪
Average
time
880
250
▪
2-3 years
0.5-1 year
Lack of
research
1,130
▪
Disparity in quality and methods
Trade-off between waitlist and
intensity of services
Target of 20 hours per week for
EIBI is not inforced
Private providers offer different
intensities based on parent’s
financial means
Lack of standardization and
accreditation
Funding allocations have not
coped with increasing demand
The per capita cost of
intervention is extremely high
Limited availability of ABA
training
Limited number of ABA board
certified therapists
“It’s a difficult
trade-off, but I
prefer offering less
intensive EIBI to
more children.”
– DG CRDITED
“It is so difficult
to find ABA
board-certified
therapists.”
– DG CRDITED
No consensus/standard on
appropriate intervention intensity
required for children with
different ASD severity levels
Confusion for parents as to what
types of intervention are
appropriate for their child and
available in Quebec
“Some children
with a mild ASD
don’t need the 20
hours/week of EIBI
and would benefit
much more from 4
hours/week of
speech therapy.”
– Pediatrician
1 For EIBI, "number of people" refers to children aged 0-5
SOURCE: MSSS Form AS-485; Quebec Auditor General; interviews; McKinsey analysis
27
27 27
Quebec is behind other provinces in terms of number of spaces
for EIBI and of direct funding options
Number of children receiving EIBI treatment
2012
Children receiving EIBI
per 100,000 population1
Children receiving EIBI per year
2,000
1,300
900
Quebec
29
Not
available
Ontario
+122%
British Alberta
Columbia
15
11
Not
available
Quebec Ontario
Annual amount provided under direct funding
$, 2012
31,2001
+164%
British Alberta
Columbia
Direct
funding
works
elsewhere
and
deserves
serious
attention
in Quebec
40,000+
22,000
0
% of users with
direct funding
Quebec3
Ontario4
British Columbia
Alberta2
0%
40%
100%
100%
The number
of additional
spaces
called for is
justified
when
compared to
other
provinces
1 Estimated for a child receiving 20 hours of intervention per week for 40 weeks a year
2 Based on 2006 figures
3 Quebec users obtain direct services through CRDITEDs but receive no public money to purchase services in the private sector
4 Direct services and direct funding are both available in Ontario
SOURCE: MSSS Form AS-485; Ontario Auditor General; BC Ministry of Child and Family Operational Performance Report 2013; StatsCan; Parliament of Canada:
“Provincial and territorial funding programs for autism therapy”
28
28 28
Multiple studies have shown that intervening as soon as possible with
20 hours of treatment a week improves outcomes for children with and
ASD
Intervening assertively and early is critical
High treatment intensity maximizes impact
48 children between 18 and 30 months, diagnosed
with an ASD, were randomly assigned to receive
20 hours of treatment a week or to receive regular
community services
27 children between 2 and 4 years old, diagnosed with
an ASD, randomly assigned to receive high (20-40
hours a week) or low (11-20 hours a week) intensity
home-based ABA treatment
20-hour treatment
Control group
Mullen
Scales of
Early
Learning
Mean score
Standard score
110
High
Low
20
15
100
Change
(follow-up 10
minus
5
baseline) 0
90
80
70
60
-5
50
Intellectual
(PEP-R)1
40
Baseline
Time 1
Educational
(BAS) 2
Time 2
Results
▪ Average IQ increase of 15.4 pts in treatment group
compared with 4.4 pts in the control group
▪ Treatment group gained 17.8 pts on receptive
language compared with 9.8 pts in the control group
Adaptive
behaviour3
(Vineland)
Results
 Stronger gains in intellectual functioning and
educational functioning for high-intensity group
 The same study showed that there is a diminishing
return after ~20 hours/week
1 Psycho-educational Profile Revised: Measures functioning in 7 developmental domains 2. British Abilities Scale is a battery of tests of cognitive abilities; 3. Vineland Adaptive Behaviour
Scale assesses children’s adaptive functioning communication, daily living skills, socialization and motor skills
SOURCE: Geraldine Dawson and al., Pediatrics Volume 125, Number 1, Jan 2010, Department of Psychology, University of Wales Swansea, UK 2006
29
29 29
OPTIMAL PATHWAY – FACT BASE
Intensive intervention can have positive repercussions on school
placement and integration, as well as cognitive and language skills
Description
Results
▪ Study randomly assigned 38 children to:
– An intensive-treatment group that had
First grade placements for intensive treatment
group
Percent
47
42
40 hours of one-on-one treatment a
week following the Lovaas treatment
– A minimal-treatment group that had 10
hours or less of one-on-one treatment a
week following the Lovaas method
– A control group of 21 other children did
not receive any Lovaas method
treatment
▪ Treatment lasted two years, during which
student therapists worked in subjects’
homes, schools or communities
▪ Note that children who ended up in normal
classes showed no permanent intellectual
deficits and their language appeared
normal
11
Normal
classroom
Aphasic classes
Special
education
First grade placements for minimal treatment
group
Percent
57
42
0
Normal
classroom
Aphasic classes
Special
education
SOURCE: Lovaas 1987
30
30 30
Quebec needs a strategy for training more board-certified therapists
to meet the demand for services and improve their quality
FTE needed per
30 children
Number needed in QC
based on 1,300 places
Degree requirement
Specialized training
Training currently
available in QC
Therapist
Team leader
Certified
supervisor
Clinical
supervisor
Total
15
2
1
0.5
18.5
~650
~90
~45
~22
~807
CEGEP Special
CEGEP/DESS/
PhD
care counselling
Bachelors/BCaBA
Masters/
BCBA
On-site
apprenticeship
On-site
apprenticeship
BCBA-certification
program and
continuing education
Doctorate in
psychology
Yes
Yes
No
Yes
Potential staffing bottlenecks
▪ Finding an adequate number of certified therapists will be difficult in the first years
▪ Requirements for board certification should be introduced gradually
▪ A Quebec-based program offering a Masters in psychology with an accompanying
BCBA certification is needed
SOURCE: BCBA website; interviews with ACT and Surrey Place; McKinsey analysis
31
31 31
3
School: summary of key facts and main issues
Key facts
Main issues
▪
From 2002 to 2010, the representation of
EHDAA students in schools increased from
1.8% to 3.3%
Integration in regular classes varies substantially according to the type of diagnosis
%, 2010
42
No ASD and
mild ID
programs
1-11
ID
Quotes
▪
MELS has no specialized program s
for individuals with a mild ID or with an
ASD, leaving it to each professor to
decide what is best to teach
▪
Students with a mild ID are not “handicapped” according to the MELS and
hence, don’t receive financial support
▪
The quality of the individual
intervention plans varies extensively
across schools and is generally low
▪
Most teachers in regular or
specialized class rooms are not
trained in ASD or ID, nor are they
required to have prior experience in
ASD/ID
Average ratio of professionals to
EHDAA students is low at 1:15
75
56
-19%
Lack of
qualified
resources
▪
▪
People with
handicap
Lack of
continuum of
services
“The teacher of my
son’s special class room was not
qualified to hold that
role. He had no idea
what TEACCH was all
about.”
– Parent
“ There are no
standards of quality
nor any definition of
success. The only
measure is the level
of complaints.”
– School psychologist
ASD
Students graduating from high school
%, 2006
People with
no handicap
Schools’ academic mandates conflict
with adaptation and rehabilitation
Despite the MSSS-MELS agreement,
many publicly or privately funded
educators are refused access to the
classroom because of collective
bargaining agreements
“There is no specific
program for students
with a mild ID. These
students have the
best chances to
become autonomous
and functional.”
– Director,
specialized school
SOURCE: Interviews; MELS; OPHQ; Protecteur du citoyen 2009 and 2012; McKinsey analysis
32
32 32
3 School: 68% of children with an ASD and/or an ID are in a special
classroom or specialized school
Social integration by diagnosis – all levels of education
Percent (2002-2010)
N = 100%
11%
Difficulty code
Key takeaways
Integrated in regular class
Non-integrated (special class or school)
229
617
1%
11%
32%
8,138
42%
2,834
89%
68%
58%
▪
89%
99%
Mild ID1
Profound
ID
Moderatesevere ID
ASD
90
23
24
80
Total
▪
Integration of ASD students in
regular class
Integration of ASD students in special class by
level of education
Number of ASD students
2002 & 2010
Number of ASD students
2006 & 2010
8,138
n = 100%
Pre-school
42%
+7%
2,284
65%
2002
35%
58%
2010
All levels
▪
11,998
Elementary
High school
1,772
12%
59%
29%
2006
3,273
8%
Variation
+85%
-4%
50%
-9%
42%
+13%
2010
Only 1-11% students
with an ID are
integrated in regular
class room compare to
42% of students with an
ASD
From 2002 to 2010, the
number of children with
an ASD increased by
7% across all levels
When looking at the
variation by level from
2002 to 2010, we
observe
– An increase of 13%
of ASD students in
special classes at
the high school
level
– A decrease of 4%
and 9% of ASD
students in special
classes at the preschool and
elementary levels
1 Represents only 10% of all students with mild ID since the remaining 90% don't have the “élève at risque” status versus the “handicapped” as per the MELS' guidelines
SOURCE: MELS; OPHQ; McKinsey analysis
33
33 33
3 School: while there is no wait list in public schools, some
specialized schools have up to 3 years of wait time
Distribution and wait times by type of classes
Key takeaway
2010
▪ Out the 68% of non-integrated
Breakdown
of students
Ratio1
Wait
time
Wait
list
Regular class
32%
1:29-34 None None
A-B
Special class
50%
1:6-15
None None
A-B-C-D
Special schools
18%
1:1-10
0-3
Up to
years 300
B-C-D-E
2010
ASD and ID students, 50% of
are in a special class and 18%
in a special schools
Segments
▪ There are only 3 private
specialized schools for ASD
students and only 3 for ID
students
▪ The ratio of professor to
students is 1 to 5 times higher
in regular class compared to
special class or specialized
schools
Number of EHDAA students
Number of students
2002-2010, thousands
1,000
N= 100%
▪ While public schools should be
886
Regular students
Handicap
students
98.2%
accessible to everyone, some
specialized schools have up to
3 years of wait time
96.7%
1.8%
3.3%
2002
2010
+1.5%
▪ From 2002 to 2010, the number
of EHDAA students has
increased by 1.5%
1 Ratio of professor to students
SOURCE: MELS; Fédération des établissements d’enseignement privés; interviews; McKinsey analysis
34
34 34
3 School: overview of specialized education programs
Mild
Moderate
to severe
Elementary level
High school level
Post-secondary level
▪
No specialized
education program
– i.e., regular
secondary program
▪
No specialized education
program – i.e., regular
secondary program
▪
Formation préparatoire à l’emploi
(FPT)
▪
Formation menant à l’exercice
d’un métier (FMS)
Education program
for students with a
mild or severe
intellectual
impairment
▪
12-15 year-old: Programmes
d'études adaptés avec
compétences transférables
essentielles (PACTE)
▪
16-21 year-old: An educational
approach that facilitates social
integration (DEFIS)
▪
16-21 year-old: An educational
approach that facilitates social
integration (DEFIS)
▪
ID
Profound
▪
Education program for students with a profound intellectual impairment
All levels
of support
▪
No specialized
education program
– i.e., regular secondary program
ASD
▪
No specialized education
program – i.e., regular
secondary program
▪
Formation préparatoire à l’emploi
(FPT)
▪
Formation menant à l’exercice
d’un métier (FMS)
SOURCE: MELS
35
35 35
4
Employment and day activities: summary of key facts and main
issues
Key facts
Key issues
620 people are waiting anywhere between
4 months to 4 years for employment
integration services
Employment integration
▪
5.9
Work cell support
Internship support
3.5
1.7
▪
“Her work is
really important
to her, it is
rewarding to
have a schedule
and somewhere
to go each day.”
cuts in funding for employment
activities by 36% and for
community integration by 29%
over the past 3 years
Not enough money to subsidize
salaries for ASD/ID people
– Sibling
▪
Lack of large employers hosting
employment programs and
community centres hosting day
activities
▪
Program hours often do not align
with the working day, making
planning complicated for parents
and caretakers
Lack of job
opportunities
1.1
Community integration has a
waitlist of 312 people and costs an
average of $5,864 per user
▪
▪ Programs lack resources due to
Lack of
resources
Average annual cost per user
$ Thousands, provincial average, 2012
Training workshops
Quotes
Schedules
Activities include leisure, elderly
programs, voluntary work programs and
school integration
▪
Preparations
A variety of community organizations offer
activities,
▪
Adolescents do not start
vocational training early enough
Schools could better integrate in
their adapted programs life skills
teaching and vocational training
“Having to get
home at noon on
Wednesdays for
her makes life
very complicated
for us.”
– Sibling
“Even with
behavioural
problems, she
works in a kitchen
with a shadow
and it is going
really well.”
– Parent
SOURCE: Interviews, MSSS Form AS-485; MSSS DI-TED program spending
36
36 36
4 Employment integration: 620 people are waiting anywhere between
4 months and 4 years for employment integration services
Wait time by age group
Service offering
Number of users, 2012
Training workshops
7,895
1,598
Work stage support
2,864
Intership support
3,123
310
New users
Number of individuals on waiting list, 2012
173
465
19
12
531
39
235
59
266
53
176
213
18-21
22 à 44
7
5-17
Costs
7
93
45+
1,458
1,087
665
5.932
188
3.450
1.697
1.065
92
5-17
624
296
18-21
22-44
564
45+
Average wait time of 560 days (1.5 yrs)
Issues
▪
▪
▪
100
Number of days, 2012
Average annual cost per user (provincial average), 2012
▪
ASD
Total of 620 (126 ASD, 494 ID) individuals on waiting list
ID and ASD
Training workshops
Work stage support
Intership support
ID
Limited capacity of resources to shadow employee in
his work environment
Limited availability of internships with employers
Limited budget to subsidise salary
Adolescence do not start planning early enough for
their future vocation
Trends
▪
▪
Program funding has reduced 36% over the past
3 years (from $39M to $25M)
Demand for employment services will increase with
the growing ASD population
SOURCE: Form AS-485
37
37 37
4 Community integration: 312 people are waiting anywhere
ID
between 0.4 to 2.8 years
ASD
Service offering
Wait time by age group
Number of users, 2012
Description
▪ Leisure
▪ Elderly
program
▪ Voluntary
work prog.
▪ School
ASD
4,902
481
4,871
508
New
users
Number of individuals on waiting list, 2012
74
6
ID
4,421
4,363
5
508
1
5-17
77
18
59
18-21
112
20
117
6
92
111
22 à 44
45+
Total of 312 (45 ASD, 267 ID) individuals on
waiting list
Beginning End of year
of year
Number of days, 2012
717
Costs
390
138
Average annual cost per user (provincial average), 2012
▪ 5,864$/user
▪
491
417
18-21
22-44
45+
Average wait time of 527days (1.4 yrs)
Trends
▪
5-17
201
987
885
Service offering is slowly increasing for people with
an ASD
Reduction by 29% of funding in the last 3 years
($40.2M to $28.5M)
Issues
▪
▪
Unclear role between 1st and 2nd line
Lack of coordination with community
organizations
SOURCE: Form AS-485; MSSS DI-TED program spending
38
38 38
5 Residential services: summary of key facts and main issues
Key facts
Key issues
▪
1,350 people have been waiting anywhere
between 1 to 4 years for one of the 12,000
beds in a RNI or RAC/RIC
User distribution, 2012
Quotes
Cost
RAC/RIC & other
▪
5%
Residential services currently
take up nearly half of the MSSS’
CRDITED budget and demand
is still not being met
Private options, costing
anywhere between $30,000 and
$40,000 a year, are beyond the
reach of most families
“Many parents
come to see me to
purchase a house
for their child, but
they can’t afford
the annual
operating costs.”
– Foundation Director
RNI 36%
59%
▪
Natural living
Future
demand
Annual cost per type of residential service,
2012, provincial average
$ Thousands
RTF
RI
RAC
▪
22
Service
quality
35
91
System not ready to deal with upsurge in
clients with an ASD diagnosed in past
20 years
▪
▪
▪
Increasing demand requires new
models that are both scalable
and cost-effective
Difficulty in finding adequate
staff will only be exacerbated
“What keeps me
up at night is not
knowing what will
happen to my
child when I am
gone.”
– Parent
The foster home model can
break up too easily
Caretakers are not required to
be trained
Parents have to stay involved
every step of the way to
maintain services
“Even though our
son is no longer at
home, we have to
constantly fight to
get him adequate
services.” – Parent
SOURCE: Interviews, MSSS Form AS-485; Quebec Auditor General
39
39 39
5
▪
▪
Residential integration: autonomy insurance favors home care,
user choice, and private sector options
By 2050, Québec could be spending between 2 and 3%
of GDP in long-term care costs alone
A lower portion of long-term care public funds go
towards home care than in other countries
Long-term care funds allocated to home care
Percent
43
41
32
73
17
Québec Netherlands Sweden
France
Denmark
Funding gap for status quo
$ Millions
91 100
2019
20
111
21
115 124
22
23
133
24
139
25
148 157
26
27
160
2028
Autonomy insurance could help provide patients with more
choice and insure continuous funding. It will provide
▪1 Basic professional care and nursing (nutrition,
rehabilitation)
▪2 Assistance with the activities of daily living (dressing,
washing, eating)
▪3 Assistance with instrumental activities of daily living
(housework, cooking, shopping)
User receives an autonomy support benefit
▪ Allocated in either hours of service or financial
contribution based on needs
▪ Private providers will be allowed to contract through the
CSSS system
Short-term funding
▪ Current long-term care funding and user fees equivalent
to the tax credit for home support services for seniors
Long-term funding
▪ Set up fund to insure long-term care
▪ Contributions will be based on disability level and
income
SOURCE: MSSS “Autonomy for all: white paper on the creation of autonomy insurance”
40
40 40
6
Parent summary and guidance: summary of key facts and issues
Key facts
Main issues
Parents want access to service coordinators
to guide them through the system and they
technically exist
Availability of service coordinators
across agencies
%
Inefficient
service
navigators
Unavailable
due to extraneous
circumstances
Unavailable
due to
agency choice
Quotes
▪
Service navigators are not accessible
in all regions and when so, there are
long wait times to see them
▪
When available, services are
inadequate to meet parent needs
▪
Often, they do not have expertise in
ASD or ID
▪
They do not have the authority to push
cases through the system
▪
High turnover does not allow for
continuity
▪
Parents do not know where to turn for
reliable information and often rely on
word of mouth
▪
No standardized information provided
to parents following diagnosis
▪
Impossible to know how many
families do not even sign up at their
local CLSC
▪
Insufficient budget to hire, train, and
retain competent resources
▪
Case workers are overloaded
5
15
50 Readily
available
25
Insufficient
information
Available but
with long waitlist
In reality, only half the CRDITEDs even have
them readily available, and parents are
generally dissatisfied with their help
Lack of
resources
“A bi-annual
intervention plan that
is filled with
objectives but not
concrete plans does
not help me at all.”
– Parent
“During the past
10 years, I’ve had 7
different service
navigators and only
one was qualified
and somewhat
helpful.”
– Parent
“Social workers are
important for crisis
situations, but we
really need someone
involved throughout
their lifetime to get to
know them, their
families, and their
needs.”
– Sibling
SOURCE: Interviews; Quebec Auditor General; Protecteur du citoyen 2010
41
41 41
6 Parent guidance: Current service navigators are not able to guide
parents through the government services related to ASD/ID
Service navigators were generally available
However, quality of service may be lagging
Availability of service coordinators across
agencies
Percent
Service navigators are generally seen as
ineffective because they
Unavailable due
to agency choice
Unavailable due to
extraneous circumstances
5
• Have no real authority to make things
happen
• Continue working in their field of expertise,
which confuses parents
▪ Do not have a clear role that is separate from
15
that of the individual service planner, who
oversees treatment choices
50 Readily
available
Available but
with long wait list
25
▪ Often do not have any ASD/ID expertise
▪ Are not recognized by ASD/ID professionals,
who either do not know that they exist or see
them as interfering in their work
As a result, parents often overlook them and
deal directly with the CRDI-TED
1 Here referring to the "intervenant pivot"
SOURCE: Rapport du protecteur citoyen 2012, 2009
42
42 42
6 Parent financial support: A wide range of financial support
options are directly available to families, but amounts are small
Type
Cash
benefits
Parents
Tax
credit
Material
benefits
Program
Source
Amount1
Description
Child assistance payments
Revenu Québec
Revenue Canada
$3,769/year
▪
Available to all families with children
Child disability benefit
Revenu Québec
Revenue Canada
$403/month
▪
Eligible the month the child is
diagnosed
Tax credit for caregivers
Revenu Québec
Revenue Canada
$3,171/year
▪
Credit for housing eligible relative
Tax credit for childcare expenses
Revenu Québec
Revenue Canada
n/a
▪
Eligible expenses include boarding
school or camp
Tax credit for volunteer respite
services
Revenu Québec
$1,000/year
▪ Eligible service is minimum
Tax credit for respite caregivers
Tax credit for medical expenses
Revenu Québec
Revenu Québec
Revenue Canada
$1,560/year
n/a
▪
Domestic help for respite
Domestic help for home care and
adapting environment
MSSS
MSSS
$6,600/year3
n/a
▪ Administered through CSSS,
▪ Administered through CSSS,
Technical assistance for
communication
MSSS
n/a
▪
400 hours
For Québec, any amount over 3%
of annual income2, includes therapy
dog
Computer, speaking/writing
assistance, adapted phones, etc.
Creates a substantial administrative burden for families
1 Estimated for family with 1 child, $40,000 income 2 Can alternatively be claimed by adults with ASD/ID 3 Maximum amount including babysitting, additional help for troubled behaviours
and emergency respite
SOURCE: Fédération de l’autisme du Québec “Ressources financières”, Revenue Québec, Revenue Canada, MESS, Régie des rentes du Québec, Vérificateur Général
43
43 43
6 Financial support: Independent individuals with an ASD/ID rely
mainly on social assistance
Type
Cash
Benefit
Individuals
with
ASD/ID
Tax
credit
Material
benefits
Program
Source
Amount1
Description
Social assistance
MESS
$927/month
▪
Reduced amount if individual lives
with parents
Home improvement fund
SCHL
n/a
▪
For individuals with disabilities to
make their homes more accessible
Home buyer tax credit
Revenue Canada
$5,000
Tax credit for medical expenses
Revenu Quebec
Revenue Canada
n/a
Exemption from paying the
Québec prescription drug
insurance premium
MSSS
n/a
Amount for severe and prolonged
impairment in mental or physical
function
Revenu Québec
$2,545/year
Disability supports deduction
Revenu Québec
Renenue Canada
n/a
Domestic help for home care
and adapting environment
MSSS
n/a
▪
Administered through CSSS,
Technical assistance for
communication
MSSS
n/a
▪
Computer, speaking/writing
assistance, adapted phones, etc.
▪
For buying first home
▪
For individuals incurring significant
medical expenses
▪
Can be applied to dependents
▪
Adaptation costs for work or higher
education
SOURCE: Fédération de l’autisme du Québec “ Ressources financières” , Revenue Québec, Revenue Canada, MESS, Régie des rentes du Québec; interviews
44
44 44
7
Parent respite: summary of key facts and main issues
Key facts
Main issues
33% of families face long wait times
One size fits
all
92% of parents cannot readily access
specialized services
Percent, 2010
92
8
Readily
available
Not available or
long wait time
There is an important gap for caretaking and
emergency support services
Number of providers of respite, caretaking and
emergency services across Quebec, sample
2014
Weekend/
7
13
2
summer
Babysitting/
caretaking
Emergency
support
1 2 1
1
0
Both
▪
Individuals have different needs
and most services have a “one size
fits all” approach
▪
Many respites put limits on the
number of weekends per family
▪
Weekends can cost $70 to $150 per
day while caretaking can amount to
$75 to $160 per day
▪
Direct governmental allocations are
not sufficient to cover parent’s needs
▪
Uneven level of service across
regions due to difference in special
needs, governance structure, growth
of demand, lack of resources, and
lack of collaboration
Disparity
across
regions
ASD
ID
4
Too
expensive
for some
parents
Quotes
Lack of
resources
▪
Insufficient budget to hire, train, and
retain competent resources
▪
High turnover of employees since
they are students
“Due to an increase
in demand, ASSS
have reallocated
budgets for parental
support to other
programs.”
– Director CSSS
“Respite weekends
cost close to $600, it
is a luxury that I
cannot afford more
than once or twice a
year.”
– Parent
“The greater and
more specific the
needs, the less
qualified respite
options. It’s really
difficult to find some
respite for a child
with challenging
behaviours.”
– Founder
community org
SOURCE: Interviews; Quebec Auditor General; Protecteur du citoyen 2010, Conseil de la famille et de l’enfance (2007); I. Picard; OPHQ; McKinsey analysis
45
45 45
7 Parental respite: there is a lack of specialized services, mainly
for parents of children with an ASD living outside of urban areas
Overview of service providers
Availability of services across Quebec
Service offer by a sample of providers of respite,
caretaking and emergency services, 2014
ASD
ID
DETAILS IN ANNEX
Parent survey on availability of regular vs. specialized respite,
caretaking, and emergency services, 2010
Number of
organizations
Both
Regular
50%
Weekend/
summer1
Babysitting/
Caretaking
Emergency
support
2
7
13
Specialized
50%
22
33%
25%
17%
4
1 2 1
1
0
5
4
9%
8%
Quickly
available
Available, but
long wait list
8%
Not available Not available
as per decision but beyond
of ASSS
control of ASSS
Roles and responsibilities
Sources of funding
Service provider survey on the responsibility to provide respite,
caretaking and emergency services, 2012
ASSS
Breakdown of cost funding for 1 week of camp at Emergo, 2013
Parents’
contribution
8%
CRDITED
12%
31%
37%
Government
subsidies
48% CSSS
Community
organizations
32%
Private
foundations
32%
1 Refers to overnight respite taking the form of week-end retreats and summer camps
SOURCE: Protecteur du citoyen (survey 2010); Interviews; FQA; Centre Philou; Emergo; McKinsey analysis
46
46 46
8 Specialized medical services : summary of key facts and main
issues
Key facts
Key issues
Quotes
▪
Gastrointestinal problem prevalence rate
%
57.0
Regular
population
85.0
+49%
Training of
the medical
professionals
Population
with ASD
▪
▪
Hospitalizations for conditions that are
manageable
1.00
%
+186%
0.35
Regular
population
Compensation for the
additional
time
▪
Patients
with an ID
ID patients had on average 2.3
unrecognized conditions and 2.7
unmanaged conditions
▪
Availability
medical
professionals
▪
▪
Interacting with patients with
an ASD or an ID is difficult in
unfamiliar settings but can be
helped with proper training
Poor communication
complicates diagnosis, which
can lead to a higher rate of
undiagnosed diseases among
the ASD/ID population
Some specialities (dentistry,
ophthalmology) require
specialized knowledge and
techniques
”I was told that the
only way to get
services for my
daughter is to go to
the emergency
room.”
– Parent
“We need to find
doctors who are
able to interact
with people who
are different.”
Visits with patients with
ASD/ID take more time, and
only family doctors and
emergency doctors are
compensated accordingly
– Parent
No directory of medical
professionals who see
individuals with an ASD or an
ID
Difficulty obtaining follow-up
visits with specialists
Even less availability for adult
care
“I am sure there
are professionals
who are sensitive
to these issues, we
just need to bring
them together.”
– Parent
SOURCE: Interviews; Ouellette-Kuntz et al. 2005; Balogh et al. 2005; Croen et al. 2006; Epilepsy Canada; Canadian Digestive Health Foundation,
47
47 47
8 The medical needs of patients with ASD/ID cannot be
met without specialized training and resources
ASD/ID have greater
medical needs
Epilepsy Prevalence Rate
Percent
39.0
0.6
Regular population
Specialists do not
receive a bonus for
treating ASD/ID
patients, even though
their visits take more
time
▪
ASD/ID patients have
difficulty discussing
their symptoms,
leading to diagnostic
over-shadowing
Lack of
time
Communication
Problems
ASD patients
Children hospitalized annually1
Percent
5
3
2
1
Impatient
▪
ASD patients
Gastrointestinal Problem
Prevalence Rate
Percent
85.0
57.0
Regular population
Several issues impede
service quality
▪
Lack of
training
Few doctors receive
training on how to
adapt their habits for
ASD/ID patients
Non-ASD
ASD
Resulting in a population that
is generally underserved
Hospitalizations for conditions that
are manageable2
Percent
1.00
0.35
Regular
population
▪
Patients
with an ID
An Australian study found that ID
patients had on average 2.3
unrecognized conditions and 2.7
unmanaged conditions
Outpatient
1 Kaiser Permanente
2 Manageable conditions are conditions the patient is expected to treat his/herself (ex. diabetes, asthma)
SOURCE: Ouellette-Kuntz et al. 2005, Balogh et al. 2005, Croen et al. 2006, Chebuhar et al. 2013, Epilepsy Canada, Canadian Digestive Health Foundation, interviews
48
48 48
6. See Things My Way:
• Vision, campaign and short-term
priorities
49
There are major issues at each transition period that we want to
address (1/3)
From
To
 Diagnosis performed within
3 months of referral and
average age of diagnosis
of 2.5 for all segments
“Too often children get
their diagnosis too late
and are no longer
eligible for EIBI.”
– DG CRDITED
1 Diagnosis
 Over 1,000 children waiting
0.5 to 31 years for a
diagnosis during a critical
time for intervention
Early
2 childhood
intervention
 Over 1,000 children waiting
0.2 to 2 years for early
intervention
 Lack of intensity with average
12.8 hours/week vs.
recommended 20 hours/week
 Average of 20 hours/week of
EIBI for children with an ASD
(segment CDE) and early
childhood stimulation for
other segments (A and B)
accessible under 3 months of
wait time
“I had to lock my
screaming child in a
room and cry on the
phone to get service.”
– Parent
3 School
 No specific ASD and mild ID
programs
 Insufficient training and professional support (1 to 14 ratio)
 Large wait lists for some
special schools
 Evidenced-based
educational and vocational
programs adapted for
children with an ASD and
for children with a mild ID
taught by trained teachers
and professionals
“There are no standards
of quality nor any
definition of success. The
only measure is the level
of complaints.”
– School psychologist
1 Includes potential 1-year delay related to pediatrician referral
SOURCE: Interviews; parent focus groups; Quebec Auditor General; FQCRDITED; CRDITED Form AS-485 2013; reports from Protecteur du Citoyen 2009 and 2012; McKinsey analysis
50
50 50
address (2/3)
From

~500 people waiting up to
4 years for employment
programs and over
300 people waiting nearly
3 years for daytime
activities
Enrolment in an employment
program for segments A, B,
and C, or in a daytime activity
program for segments C, D,
and E within 3 months of
completing school
“Her job is so
important to her, it was
terrible when she had
nowhere to go once
school ended.”
– Sibling

1,400 individuals waiting
up to 11 years to access
residential services

Limited number of private
alternatives
70% of CRDITED users living
in a natural environment with
proper home support, and
creation of 1,000 new places in
affordable residential settings
“What keeps me up at
night is not knowing
what will happen to
my child when I am
gone.”
– Parent

Only half of the parents
have readily access to
service navigators

Social workers lack an
ASD/ID-specific training
and time
Within 15 days of diagnosis
confirmation, access to a
service navigator trained in
ASD and ID, useful
documentation, and proper
support across all transition
points
“During the past 10 years,
I have had 7 different
social workers and only
one was qualified and
somewhat helpful.”
– Parent
Employment
and/or
4
daytime
activities
5
6
Residential
services
Parent
guidance
To
SOURCE: Interviews; parent focus groups; Quebec Auditor General; FQCRDITED; CRDITED Form AS-485 2013; reports from Protecteur du Citoyen 2009 and 2012; McKinsey analysis
51
51 51
address (3/3)
From
7 Parent
respite
Specialized
8 medical
care
 Only 8% of parents have
readily access to
specialized respite
 Government subsidy is
based on an average salary
of $3.50/hour
 Despite greater medical
needs due to higher % of
comorbidity, very few
physicians/specialists are
trained and willing to treat
adult ASD/ID patients
To
Access for all segments to a
minimum of 12 overnight
week-end respites per year
(inside or outside of the home)
and access to emergency
respite within 24 hours
“Due to an increase in
demand, CSSS have
reallocated budgets
for parental supports
to other programs.”
– Director CSSS
Access to a dentist, a primary
care physician, and specialists
trained to treat people with an
ASD or ID for all segments
“I was told that the
only way to get
services for my
daughter is to go to
the emergency room.”
– Parent
SOURCE: Interviews; parent focus groups; Quebec Auditor General; FQCRDITED; CRDITED Form AS-485 2013; reports from Protecteur du Citoyen 2009 and 2012; Ouellette-Kuntz 2005;
McKinsey analysis
52
52 52
We will intervene across the system in order to have a lasting impact
Vision
A world where every person with
an ASD or ID develops his or her
potential and leads a fulfilling life
Assess
Advocate
Support
Build
Outline important
gaps and track
system-wide
performance
Convene stakeholders to increase
awareness,
promote
individuals’ rights,
instigate change,
and improve
services delivery
Support partners to
enhance their
service offering
through funding,
training, research,
and knowledge
transfer
Pilot innovative and
high-impact social
initiatives
Mission
Enable an integrated, seamless system across the lifespan for individuals
with an ASD or ID and their families
53
53 53
See Things My Way is an innovative campaign with a novel concept
– a pair of glasses - to portray how different individuals, can see the
world in their own way. The campaign reflects the importance of
empathy and individuality in treatment, support, care, awareness,
advocacy, and mobilization.
54
Co-chairs and Spokesperson of the Capital Campaign
A dedicated team that brings changes
Aldo Bensadoun, Founder and
Executive Chairman,
The ALDO Group
22/12/2014
Jean Coutu, Chairman of the
Board,
The Jean Coutu Group Inc.
Charles Lafortune,
Father of an autistic child and
Quebec television celebrity
55
55 55
56
56 56
57
57 57
Our first proposed major initiative: solve diagnosis wait lists
Objective
Diagnosis performed within 3 months of referral
Montreal initiative
Rest of Quebec initiative
Sustainability measures
▪
▪
▪
Provide continuous training to
professionals in the field
▪
Use tools and case examples to
develop a diagnosis model
customized to the region’s needs
Evaluate the quality of diagnostics
(e.g., false positives) to optimize
processes and tools
▪
Reinforce diagnostic capabilities and
help optimize the diagnosis process
in health network through training
and shared learning
Help to simplify and standardize
diagnostic requirements across
health, social services, and
education
▪
Track the diagnostic wait lists and
reinforce (e.g., include in the Plan
d’Accès aux Services pour les
personnes ayant une déficience)
Build an assessment centre that
brings together resources from the
health network and implements
optimized diagnostic processes
▪ Provide navigation support to
▪
parents at this critical moment
▪
Simplify the information flow among
the CSSS, the diagnostic clinic, and
the hospital centres
▪
Assess wait lists across Quebec and
target regions with the longest wait
times
Guiding Principle
 Inter-disciplinary process that is highly effective and efficient, with personnel who have deep
expertise and experience
58
58 58
See Things My Way Assessment Centre
In complementarity with the health and social services network
▪
▪
▪
Hospital centres
Specialty developmental clinics
▪
▪
Guiding
principles
Complex diagnoses
Specialized medical tests
3
line
Referrals ages
0-5
From hospital
centres (wait
lists)
Differential
diagnoses or
more in-depth
assessments
Referral for
services
Assessment centre
▪
▪
▪
▪
▪
▪
▪
Reinforce network capacity
Respect local service networks
Promote best practices in assessment of Autism Spectrum Disorder
(ASD), intellectual disability(ID) and global developmental delays
(GDD).
Offer support for family
Support applied research for continuous service improvement
Children at high risk for
ASD, ID, GDD
Needs assessment
Interdisciplinary
Diagnostic profile
Navigation services
Referral / Guidance
▪ Local service network
▪ Family support services
▪ General and specific services
▪ “Intervenant pivot”
Clear diagnostic
profile
Treatment
Re-adaptation centres
▪
▪
CRDITED and CRDP
Intervention clinics
2
line
1
line
Educational
support
2
line
▪
▪
▪
Support to family members
Training
Knowledge transfer
1
line
59
59 59
Our second proposed major initiative will be early childhood intervention
Objective
Ensure access to intensive early intervention services
(Early Intensive Behavioural Intervention)
Boost capacity to provide highquality behavioural intervention
Advocate to increase the number of
children in services and to increase
intensity of services.
Sustainability measures
▪
▪
▪
▪
Help to increase capacity and
accessibility to early intensive
intervention services
Enable continuous high-quality training
in applied behavioural analysis (ABA)
in Quebec for therapists.
Establish a partnership with the local
service networks in Quebec to offer
intensive intervention services (EIBI)
so as to quickly reduce wait lists and
increase intensity of services in a
cost-efficient manner.
Support the creation of a program
or scholarship to increase the
number of ABA board-certified
therapists
• Promote research on best
practices with a view to informing
network providers on:
 Intervention models;
 Intervention intensity; and
 the nature of support required
by the different sub-groups of
individuals living with TSA/ID
60
60 60
7. Acknowledgment
The Miriam Foundation would like to thank the many individuals who agreed to be
interviewed for this study, without whom it would not have been possible.
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Dr. Evdokia Anagnostou
Daniel Amar
Henriette Angers
Claude Belley
Marie-Claude Bénard
Daniel Bilodeau
Karine Boivin
Dr. Stéphane Borreman
Dr. Jessica Brian
Marie-Christine Brosseau
Manon Carle-Dagenais
Dr. Lionel Carmant
Jacques Chartrand
Sophie Clermont
Isabelle Cohen
Dre. Guylaine Côté
Dre. Dominique
Cousineau
Sylvie Coutu
Dre. Sylvie Donais
Carolyn Dudley
Steven Finlay
Nancy Freeman
Dr. Abraham Fuks
22/12/2014
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Dre. Nathalie Garcin
Sally Ginter
Dr. Brian Greenfield
Warren Greenstone
Diane Guerrera
Salvatore Guerrera
Debbie Irish
Karen Kalynchuk
Manon Lacroix
Carmen Lahaie
Mike Lake
Jo-Ann Lauzon
Normand Lauzon
Marie-Claude Leblanc
Daniel Lévesque
Francis MacNeil
Ravita Mahara
Louis-Marie Marsan
Dr. André Masse
Dr. Vitor Mathias
Nancy Ménard-Cheng
Pascale Michaud
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Lucie Mongrain
Dre. Diane Morin
Dre. Katherine Moxness
Jeanne Pascal Ngoujou
Manon Noiseux
Dre. Hélène Ouellette-Kuntz
Joël Paquin
Josie Primiani
Garry Pruden
Deborah Pugh
Dre. Marie-Claire Richer
Dre. Mélina Rivard
Andrée Robert
Pierre Simard
Marc Sougavinski
Dr. Lara Stern
Dr. Marc Tassé
Luc Thériault
Dr. Yves Tremblay
Jeanette van Beek
Dahlia Waisgrus
Dr. Michael Weinstein
Dr. Jonathan Weiss
Please note: We apologize if we have unintentionally left out any individuals. Please let us know if we have done so. We will have happy to add them.
61
61 61
8. BIBLIOGRAPHY
1- Government documents
Québec:
• Fédération Québécoise de l’Autisme (2013) “Résumé du chapitre 2 du rapport du Vérificateur général du Québec, printemps 2013 ”
• Gouvernement du Québec (2012) “Bilan 2008-2011 et perspectives, un geste porteur d’avenir.”
• Gouvernement du Québec (2013) “Livre blanc sur la création d’une assurance autonomie ” L’autonomie pour tous
• Mercier, Céline (2013) “L’efficacité des interventions de réadaptation et des traitements pharmacologiques pour les enfants de 2 à 12 ans ayant un
trouble du spectre de l’autisme (TSA) Septembre 2013 ” INESS
• Rapport spécial du protecteur du citoyen (2009) “Les services gouvernementaux destinés aux enfants présentant un trouble envahissant du
développement ” www.protecteurducitoyen.qc.ca
• Rapport spécial du protecteur du citoyen (2012) “ Les services aux jeunes et aux adultes présentant un trouble envahissant du développement: De
l’engagement gouvernemental à la réalité ” www.protecteurducitoyen.qc.ca
• Vérification de l’optimisation des ressources (2013) “Services de santé et services sociaux Déficience intellectuelle et troubles envahissants du
développement ” Rapport du Vérificateur général du Québec à l’Assemblée nationale pour l’année 2013-2014
Federal:
• Economic action plan (2014) “Supporting Jobs and Growth Connecting Canadians With Available Jobs”
• Parliamentary information and research services (2006) “Provincial and territorial funding programs for autism therapy”
• Parliamentary information and research services (2009) “Childhood autism in Canada some issues relating to behavioural intervention”
• The Standing Senate Committee on Social Affairs, Science and Technology (2007) “Final Report on: The Enquiry on the Funding for the Treatment of
Autism: Pay now or pay later - Autism families in crisis” www.parl.gc.ca
Ontario:
• Ministry of Children and Youth Services (2013) “Autism Services and Supports for Children”
Other provinces:
• Alberta Government (2004) “Family Support for Children with Disabilities Policy and Procedures Manual”
• British Columbia Ministry of Children and Family Development (2012) “Autism Funding Eligible Expenses”
• Dudley, Carolyn, and Emery, J.C. Hubert (2014) “The Value Of Caregiver Time:Costs Of Support And Care For Individuals Living With Autism
Spectrum Disorder”
• PEI Education and early childhood development (2012) “A guide to early years autism services”
Other countries:
• European Social Enterprise Network. http://www.socialfranchising.coop/members-directory
63
63 63
2- Key Statistics on ASD and ID
Prevalence of ASD:
• Fédération Québecoise de l’Autisme. “Répartition des TED en milieu scolaires.” 2014. http://www.autisme.qc.ca/TSA/lautisme-en-chiffres/repartitiondes-ted-en-milieu-scolaire.html2/17/2014
• Fombonne, Eric. (2012) “Epidemiology of Autism” Encyclopedia of Early Childhood Development. July 2012.
• National Epidemiologic Database for the Study of Autism in Canada (NEDSAC). (2012) “Changes in the Prevalence of Autism Spectrum Disorders in
Newfoundland and Labrador, Prince Edward Island, and Southeastern Ontario”
Co-morbidity:
• Crocker, A.G. et al. (2006) “Prevalence and types of aggressive behaviour among adults with intellectual disabilities” Journal of Intellectual Disability
Research
• Dekker, Marielle C. et al. (2002) “Emotional and behavioral problems in children and adolescents with and without intellectual disability” Journal of
Child Psychology and Psychiatry
• Department of Health. (2007) “Services for people with learning disabilities and challenging behaviour or mental health needs”
• Einfeld, Stewart L. et al. (2006) “Psychopathology in Young People With Intellectual Disability” JAMA.
• Emerson, Eric. et al. (2001) “The prevalence of challenging behaviors: a total population study” Research in Developmental Disabilities
• Gardner, William I. & Moffatt, Courtney W. (1990) “Aggressive behaviour: definition, assessment, treatment” International Review of Psychiatry
• Govreau, Claude (2014) “Autisme, Agir tôt et intensivement” Actualités UQAM http://www.actualites.uqam.ca/2014/4419-autisme-agir-totintensivement#.Ux53If2V-Ao.gmail
• Mérineau-Côté, J. et al. (2012) “Challenging behaviour and physical health in intellectual disability”
• Méthot, Sophie. (2004) “Les troubles de l’humeur et les troubles anxieux chez les personnes présentant un retard mental: traduction d’un instrument
de dépistage et études de comportements problématiques associés à ces troubles.” Thesis.
• Mouridsen, Svend Erik et al. (2007)” Psychiatric Disorders in the Parents of individuals with Infantile Autism: A Case-Control Study “ Psychopathology
• Rojahn, Johannes and Tassé, Marc J. “Psychopathology in Mental Retardation” in Jacobson, John W. (Ed); Mulick, James Anton (Ed), (1996). Manual
of diagnosis and professional practice in mental retardation.
• Tassé, Marc et al. (2012) “Définition d’un trouble grave du comportement chez les personnes ayant une déficience intellectuelle.” Canadian Journal of
Behavioural Science
• The Developmental Consulting Program. (2001) “Building Resource Systems for Persons with a Dual Diagnosis” Southeastern Ontario District Health
Council.
Intellectual Disability:
• American Psychiatric Association (2013) “Intellectual Disability Fact Sheet”
• Rêvanous. “Définition des besoins du marché et de la clientèle cible“http://revanous.org/crbst_17.html
• Reynolds, Tammy et al. (2013) “Intellectual Disability and Severity Codes.” Seven Counties Services Inc.
64
64 64
2- Key Statistics on TSA and ID (cont’d)
Life expectancy:
• Hogg, J. et al. (2001) “Healthy Ageing – Adults with Intellectual Disabilities: Ageing and Social Policy” Journal of Applied Research in Intellectual
Disabilities
• Payeur, Frédéric F. (2013) “La mortalité et l’espérance de vie au Québec en 2012” Institut de la Statistique du Québec
• Rioux, Sonia. (2013) “Le vieillissement des personnes qui présentent une incapacité intellectuelle”
• Thorpe, L., Davidson, P., & Janicki, M.P. (2000). “Healthy Ageing - Adults with Intellectual Disabilities: Biobehavioural Issues”. Geneva, Switzerland:
World Health Organization.
• Woolfenden, Sue et al. (2011) “A systematic review of two outcomes in autism spectrum disorder –epilepsy and mortality” Developmental Medicine &
Child Neurology
Ontario:
• Lunsky, Yona et al. (ed.) (2013) “Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario” Institute for Clinical Evaluative
Sciences (ICES)
Québec:
• Des Rivières-Pigeon, Catherine et al. (2012) “Augmentation de la prévalence du TED: causes multiples.” L’Express.
• Direction de la Santé Publique de la Montérégie. (2009) “Le trouble envahissant du développement (TED) : l’augmentation de la prévalence poursuit
son cours – données finales” Agence de santé et de services sociaux de Montérégie
• Noiseux, Manon (2009) “Surveillance des troubles envahissants du développement chez les enfants de 4 à 17 ans de la Montérégie, 2000-2001 à
2007-2008” Agence de santé et de services sociaux de Montérégie.
65
65 65
3- Diagnosis
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
A. Baghdadli et al. (2013) “Recommandations pour la pratique Clinique du dépistage et du diagnostic de l’autisme et des troubles envahissants du
développement” Archives de pédiatrie.
Allen, R. et al. (2008) “Autism Spectrum Disorders: Neurobiology And Current Assessment Practices”. Psychology in the Schools
British Columbia Ministry of Child and Family. “Diagnosis and Assessment” http://www.mcf.gov.bc.ca/autism/assess_diagnosis.htm?WT.svl=Body
Collège des médecins du Québec et de l’Ordre des psychologues du Québec (2012) “Les troubles du spectre de l’autisme l’évaluation clinique ”
CSSS Montérégie. (2007) “Coût d’évaluation diagnostique TED ”
Dua, Vikram (2003) “Standards and Guidelines for the Assessment and Diagnosis of Young Children with Autism Spectrum Disorder in British
Columbia: An Evidence-Based Report prepared for The British Columbia Ministry of Health Planning” British Columbia Ministry of Health Planning.
Dua, Vikram. (2008) “The Diagnostic Process in British Columbia” Living & Working with Children with Autism Spectrum Disorder in British Columbia.
Autism Community Training.
Échelle salariale réseau CRDITED. (2014)
Evdokia Anagnostou et. Al. (2014) “Autism spectrum disorder: advances in evidence-based practice” CMAJ
Falkmer, Torbjörn. (2013) “Diagnostic procedures in autism spectrum disorders: a systematic literature review” Eur Child Adolesc Psychiatry
Garcin, Nathalie. (2013) “Plan de résorption: Listes d’attentes diagnostiques pour les jeunes soupçonnés de présenter un TSA à Montréal” Fondation
Miriam.
Goin-Kochel, Robin P. et al. (2006) “How many doctors does it take to make an autism spectrum diagnosis?” Autism
Huerta, Marisela and Lord, Catherine. (2012) “Diagnostic Evaluation of Autism Spectrum Disorders” Pediatr Clin North Am.
Lacroix, Manon et Ricard, Jean-Marc. (2006) “Lignes directrices d’évaluation diagnostique des troubles envahissants du développement (TED) en
Montérégie 0-18 ans ” Agences de la santé et des services sociaux de la Montérégie.
New York State Department Of Health Bureau Of Early Intervention (2013) “Best Practice Protocol for Early Screening of Young Children for Autism
Spectrum Disorders (ASDs) by Pediatric Primary Care Providers”
Ontario Ministry of Children and Youth Services. (2006) “A Shared Responsibility Ontario’s Policy Framework for Child and Youth Mental Health”
Perry, Adrienne and Condillac, Rosemary. “Evidence-Based Practices for Children and Adolescents with Autism Spectrum Disorders:Review of the
Literature and Practice Guide” Children’s Mental Health Ontario.
Perry, Adrienne et al. “Best Practices and Practical Strategies for Assessment and Diagnosis of Autism” Ontario Association for Developmental
Disabilities
Plauch, Chris et al. (2007) “Identification and Evaluation of Children With Autism Spectrum Disorders” Pediatrics.
66
66 66
3- Diagnosis (cont’d)
Diagnostic tools:
• Autism Victoria (2009) “The diagnostic process for children, adolescents and adults referred for assessment of autism spectrum disorders”
• Child Health & Development Interactive System. www.chadis.com
• Miriam Foundation (2008) “Screening, Assessment and Diagnosis of Autism Spectrum Disorders in Young Children: Canadian Best Practice
Guidelines”
• National and international ASD screening, assessment and diagnotic guidelines – environmental scan (2014)
• National Collaborating Centre for Women and Children’s Health (2011) “Autism: Recognition referral and diagnosis of children and young people on
the autism spectrum”
• National Institute of Health and Clinical Excellence. (2011) “Autism Recognition, referral and diagnosis of children and young people on the autism
spectrum”
• Volkmar, Fred et al. (2014) Practice Parameter for the Assessment and Treatment of Children and Adolescents with Autism Spectrum Disorder
67
67 67
4- Early Intervention
Intervention:
• Agency for Healthcare Research and Quality (2011) -“Effective health care program - Therapies for Children With Autism Spectrum Disorders”.
Comparative Effectiveness Review
• Aldred, Catherine. et al. (2004) “A new social communication intervention for children with autism: pilot randomized controlled treatment study
suggesting effectiveness”. Association for Child Psychology and Psychiatry.
• Cohen, Haward. et al. (2006)”Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting”. Developmental and
Behavioral Pediatrics
• Comité stimulation précoce issu du Comité régional des associations pour la déficience intellectuelle (2009) “Stimuler tôt, agir ensemble, une
intervention porteuse d’avenir ! Pour une vision renouvelée de la stimulation précoce des enfants présentant une déficience intellectuelle”
• Dawson, Geraldine (2010) “Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model” Pediatrics
• Diggle, T et al. (2005) “Parent-mediated early intervention for young children with autism spectrum disorder (Review)” The Cochrane Collaboration.
• Drew, Auriol and al. (2002) “A pilot randomised control trial of a parent training intervention for pre-school children with autism Preliminary findings and
methodological challenges” European Child & Adolescent Psychiatry.
• Easton, Harper Grey. et al. (1999) “Cost-Benefit Analysis of Lovaas Treatment For Autism and Autism Spectrum Disorder (ASD)”. Colombia Pacific
Consulting.
• Eikeseth, Svein . et al. (2012) “Outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and
kindergarten settings”. Research in Autism Spectrum Disorders
• Eldevik, Sigmund. et al. (2012) “Outcomes of Behavioral Intervention for Children with Autism in Mainstream Pre-School Settings”. J Autism Dev
Disord.
• Els for Autism Foundation Centre of Excellence. http://www.elsforautism.com/site/PageServer?pagename=center_excellence.
• Hayward, Diane (2009) “Assessing progress during treatment for young children with autism receiving intensive behavioural interventions”Autism
• Howard, Jane S. (2005) “Research in Developmental Disabilities-A comparison of intensive behavior analytic and eclectic treatments for young
children with autism” Elsevier Ltd.
• Reed, Phil. (2006) “Brief Report: Relative Effectiveness of Different Home-based Behavioral Approaches to Early Teaching Intervention”. J Autism
Dev Disord
• Smith, Tristram. et al. (2000) “Randomized Trial of Intensive Early Intervention for Children With Pervasive Developmental Disorder”American
Association on Mental Retardation.
• Warren, Zachary. et al. (2011) “A Systematic Review of Early Intensive Intervention for Autism Spectrum Disorders”. Pediatrics.
68
68 68
4- Early Intervention (cont’d)
Socialization:
• Fletcher-Watson, S. et al. (2009) “Eye-movements reveal attention to social information in autism spectrum disorder”. Neuropsychologia.
• Landa, Rebecca J. “Intervention targeting development of socially synchronous engagement in toddlers with autism spectrum disorder: a randomized
controlled trial”. Journal of Child Psychology and Psychiatry.
• Levy, Florence. (2013) “The autism spectrum disorder 'epidemic': Need for biopsychosocial formulation”. Australian and New Zealand Journal of
Psychiatry.
• MacFabe, Derrick F. et al. (2011) “Effects of the enteric bacterial metabolic product propionic acid on object-directed behavior, social behavior,
cognition, and neuroinflammation in adolescent rats: Relevance to autism spectrum disorder”. Behavioural Brain Research
• Noriuchi, Madoka. et al. (2010) “Altered white matter fractional anisotropy and social impairment in children with autism spectrum disorder”. Brain
research
• Yoder , Paul. et al. (2009) “Predicting Social Impairment and ASD Diagnosis in Younger Siblings of Children with Autism Spectrum Disorder”. J Autism
Dev Disord
69
69 69
5- School
Academic research:
• Brennand, Richard. et al. (2011) “Vocal emotion perception in pseudo-sentences by secondary-school children with Autism Spectrum Disorder”.
Research in Autism Spectrum Disorders
• de Bruin, Catriona L. et al. (2013) “Public School–Based Interventions for Adolescents and Young Adults With an Autism Spectrum Disorder: A MetaAnalysis”. AERA
• Eapen, Valsamma. et al. (2013) “Clinical outcomes of an early intervention program for preschool children with Autism Spectrum Disorder in a
community group setting”. BMC Pediatrics.
• Fernell, Elisabeth and Gillberg, Christopher. (2010) “Autism spectrum disorder diagnoses in Stockholm preschoolers”. Research in Developmental
Disabilities.
• Fernell, Elisabeth. et al. (2011) “Early intervention in 208 Swedish preschoolers with autism spectrum disorder. A prospective naturalistic study”.
Research in Developmental Disabilities
• Georgiades, Stelios. et al. (2011) “Phenotypic Overlap Between Core Diagnostic Features and Emotional/Behavioral Problems in Preschool Children
with Autism Spectrum Disorder”. J Autism Dev Disord.
• MacDonald, Megan Iola. (2011) “The Influence of Motor Skills on the Social Communicative Skills of Children with Autism Spectrum Disorder “.
Dissertation.
• MacDonald, Megan. et al. (2013) “The Relationship of Motor Skills and Social Communicative Skills in School-Aged Children With Autism Spectrum
Disorder”. Human Kinetics.
• Odom, Samuel L. et al. (2009) “Evidence-Based Practices in Interventions for Children and Youth with Autism Spectrum Disorders”. Preventing School
Failure.
70
70 70
5- School (cont’d)
Policy Documents:
• Agency of Healthcare Research and Quality. “Interventions for Adolescents and Young Adults With Autism Spectrum Disorders” (2012).
• Comité patronal de négociation pour les commissions scolaires francophones (CPNCF). (2011). “Entente intervenue entre d'une part, le comité
patronal de négociation pour les commissions scolaires francophones (CPNCF) et d'autre part, la centrale des syndicats du québec (CSQ) pour le
compte des syndicats d'enseignantes et d'enseignants qu'elle représente”.
• Commission scolaire de la Capital (2008) “Politique relative à l’organisation des services éducatifs complémentaire aux élèves à risque et aux élèves
handicapés ou en difficulté d’adaptation ou d’apprentissage ”
• Commission scolaire de Montréal. (2013) “Liste des points de service pour élèves handicapés ou en difficulté d’adaptation ou d’apprentissage”
• Direction de l’adaptation scolaire et des services complémentaires. (2002) “ Les services Educatifs complémentaires : essentiels à la réussite”
• Fédération des comités des parents du Québec. (2010) “Guide d’accompagnement à l’intention des parents d’un enfant ayant des besoins
particuliers”.
• Fédération des comités des parents du Québec. (2010) “L’intégration scolaire: position de la FCPQ! ‘L’éducation des enfants, ce n’est pas une
question d’étiquette, c’est une question de besoins et de droits’”
• Fédération québécoise de l’autisme. (2013) “Favoriser l’accessibilité des personnes autistes aux études supérieures”.
• Fédération québécoise de l'autisme(2011) “Répartition des TED en milieu scolaire”
• Gouvernement du Québec Ministère de l’Éducation, du Loisir et du Sport. (2008) “Règles budgétaires pour l’année scolaire 2008-2009”.
• Gouvernement du Québec Ministère de l’Éducation, du Loisir et du Sport. (2011) “Programme éducatif destiné aux élèves ayant une déficience
intellectuelle profonde”
• Gouvernement du Québec Ministère de l’Enseignement supérieur, de la Recherche, de la Science et de la Technologie (2013) “Modèle d’organisation
des services aux étudiantes et étudiants ayant un trouble d’apprentissage, un trouble mental ou un trouble de déficit de l’attention avec ou sans
hyperactivité”.
• Gouvernement du Québec Ministère de l'Éducation (1998) “ Programmes d'études adaptés”
• Gouvernement du Québec Ministère de l'Éducation, du Loisir et du Sport. (2010) “Document d'appui à la réflexion Rencontre sur l’intégration des
élèves handicapés ou en difficulté”
• Gouvernement du Québec Ministère de l'Éducation. (1999) “Une école adaptée à tous ses élèves”.
• Gouvernement du Québec, Ministère d’Éducation, Loisir et Sport “Individualized Education Plan ”
• Gouvernement du Québec, Ministère d’Éducation, Loisir et Sport “Plan d’action pour soutenir la réussite des élèves handicapés ou en difficulté
d’adaptation ou d’apprentissage (EHDAA) ”
• Gouvernement du Québec, Ministère d’Éducation, Loisir et Sport. (2008)”Rapport d’évaluation de l’application de la politique de l’adaptation scolaire”
• Gouvernement du Québec, Ministère de l’Éducation, du Loisir et du Sport. (2010) “L’offre de services pour les étudiants des cégeps ayant un problème
de santé mentale ou un trouble mental”.
• Gouvernement du Québec. (2007)‘ “L’organisation des services éducatifs aux élèves à risque et aux élèves handicapés ou en difficulté d’adaptation
ou d’apprentissage (EHDAA)”.
71
71 71
5- School (cont’d)
Policy Documents
• Gouvernement du Québec. (2011). “Français, Mathématique Sciences humaines: Enseignement primaire”.
• Gouvernement du Québec. (2013) “On s'élève! Outils de sensibilisation au potentiel éducatif des personnes handicapées”
• Gouvernement du Québec. (2013) “Un avenir sans limites ! La formation professionnelle et technique (FPT) et les personnes handicapées”. Camo
• Gouvernement du Québec. (2004) “Le plan d’intervention au service de la réussite de l’élève”.
• Gouvernement du Québec. (2007) “La participation sociale des personnes handicapées au Québec : les activités éducatives pour la petite enfance”.
• Gouvernement du Québec. (2007)”L’organisation des services éducatifs aux élèves à risque et aux élèves handicapés ou en difficulté d’adaptation ou
d’apprentissage (EHDAA)”
• Gouvernement du Québec. (2009) “À la même école. Les élèves handicapés ou en difficulté d’adaptation ou d’apprentissage : évolution des effectifs et
cheminement scolaire a l’école public.”.
• Gouvernement du Québec. (2011) “2Deux réseaux, 1un objectif : le développement des jeunes Cadre de référence pour soutenir le développement et
le renforcement d’un continuum de services intégrés pour les jeunes, aux paliers local et régional”.
• Gouvernement du Québec. (2011) “Démarche éducative favorisant l'intégration sociale”.
• Gouvernement du Québec. (2011)”Lignes directrices pour l’intégration scolaire des élèves handicapés ou en difficulté d’adaptation ou
d’apprentissage”.
• Gouvernement du Québec. (2014) “Information et traitement relatifs au programme réussir (PAAS – réussir)”.
• Government du Québec. (2004) “Guide to using the framework for developing individualized education plans (IEPs)”.
• L’Office des personnes handicapées du Québec (2011) “La transition des études postsecondaires vers le marché de l’emploi”.
• L’Office des personnes handicapées du Québec. (2006) “Les approches adaptatives et inclusives visant l’intégration scolaire, professionnelle et
sociale des personnes handicapées”.
• L’Office des personnes handicapées du Québec. (2009) “Consultation sur l’accès à l’éducation et l’accès à la réussite éducative dans une perspective
d’éducation pour l’inclusion”.
• Membres du réseau éducation formation handicap (2013) “Pour des études accessibles du préscolaire à l’université”. Camo
• Ministère de l’Éducation, du Loisir et du Sport (2010) “Guide pour soutenir une première transition scolaire de qualité”.
• Ministère de l’Éducation, du Loisir et du Sport (2012) “Guide pour soutenir une transition scolaire de qualité vers le secondaire”.
• Ministère de l’Éducation, du Loisir et du Sport (2013) “Identification administrative des élèves handicapés et des élèves en difficulté d'adaptation ou
d'apprentissage”.
• Office des personnes handicapées du Québec . (2009) “À part entière un véritable exercice du droit à l’égalité”
• Québec education program “Chapter 5, Work-Oriented training path. Prework training. Training for a semiskilled trade”
• Réseau des écoles spécialisées pour les EHDAA (2013) “Le plan d'intervention adapté aux besoins et aux capacités de l'élève ”
• Réseau Éducation Formation Handicap(2013) “Pour des études accessibles Du préscolaire à l’université”. Camo
• Service des communications en collaboration avec les conseillers des services aux membres (2013) “Règles de formation des groupes”.
• TÉVA (2012) “Transition école-vie active, un outil de planification île de Montréal – Le jeune et son projet de vie au cœur de la démarche ! ”
• Vérificateur Général du Québec (2000) “Gestion des services visant l’adaptation scolaire des élèves en difficulté”
72
72 72
6- Work and Day Activities
•
Seltzer, Marsha and al.(2004) “Trajectory of development in adolescents and adults with autism” MRDD Research Reviews
Professional Training:
• American Academy of Pediatrics (2012) “A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders”
Pediatrics
• National institute of health public access author manuscript (2011) “Changes in the Autism Behavioral Phenotype during the Transition to Adulthood” J
Autism Dev Disord
• TÉVA (2012) “Transition école-vie active, un outil de planification (île de Montréal) – Le jeune et son projet de vie au cœur de la démarche”
Work Integration:
• (2011) “5.13 Programme d’aide et d’accompagnement social (PAAS) action” EMPLOI-QUÉBEC Direction des mesures et des services aux individus
• Commission scolaire de la Pointe-de-l’Île, École secondaire Antoine-de-Saint-Exupéry (2014) “En Vue de… mon parcours de formation axée sur
l’emploi : Guide d’information - Année scolaire 2013-2014”
• Fédération des comités de parents du Québec (2012) “Guide d’accompagnement à l’intention des parents d’un enfant ayant des besoins particuliers”
www.fcpq.qc.ca
• Fédération québecoise de l’autisme (2013) “Portrait des services socioprofessionnels chez les personnes autistes de 21 ans et plus”
• Office des enfants handicapés du Québec (2011) “La transition des études postsecondaires vers le marché de l’emploi” www.ophq.gouv.qc.ca
• Quebec Education program (??) “Chapter 5, Work-Oriented Training Path – Prework Training, Training for a semiskilled Trade”
• Research Snapshot (2013) “What types of activities do young adults with Autism Spectrum Disorder do after high School?” A S D Mental Health
73
73 73
7- Residential
•
•
•
•
•
•
•
•
•
Association du Québec pour l’intégration sociale (2010) “Du rêve à la réalité. 12 modèles de milieux de vie alternatifs, 12 histoires. Mode d’emploi pour
le développement de milieux de vie novateurs et sécuritaires”
Autism speaks (2013) “National Housing and Residential Supports Survey”
Community Living Toronto Lights (2012) “Initial Program Evaluation: September 2010 - October 2011”
Community Living Toronto LIGHTS (2013) “Final pilot program evaluation: Milestones achieved and client satisfaction”
CRDI Montérégie-Est et Chaire de déficience intellectuelle et troubles du comportement UQAM (2010) “L’évaluation de l’implantation et de l’efficacite
de la maison Lily Butters – rapport d’activités 2008-2010 ”
Liste de résidence des usagers
Ministère de la santé et des services sociaux du Québec (2013) “Services sociaux “Guide des responsabilités des agences de la santé et des services
sociaux au regard des ressources intermédiaires et des ressources de type familial - Orientations ministérielles”
Morin, Diane (2011) “Guide d’implantation d’une ressource spécialisée pour les personnes présentant des troubles graves du comportement ”
National Disability Authority (2011) “Health and Personal Social Services for People with Disabilities in The Netherlands”
74
74 74
8- Parent guidance
•
•
•
•
•
•
•
•
•
•
Baker, Jason K. et al. (2011) “Change in Maternal Criticism and Behavior Problems in Adolescents and Adults with Autism Across a 7-Year Period”
Journal of Abnormal Psychology
Bromley, Jo et al. (2004) “Mothers supporting children with autistic spectrum disorders Social support, mental health status and satisfaction with
Services” Autism
Hall, Heather R. and Graff, J. Carolyn (2011) “The Relationships Among Adaptive Behaviors of Children with Autism, Family Support, Parenting
Stress, and Coping” Informa health care
Hare, Douglas Julian et al. (2004) “The health and social care needs of family carers supporting adults with autistic spectrum disorders” Autism
Hartley, Sigan L.et al. (2011) “Marital Satisfaction and Parenting Experiences of Mothers and Fathers of Adolescents and Adults with Autism” AJIDD
IACC (2012) “The Interagency Autism Coordinating Committee STRATEGIC PLAN for Autism Spectrum Disorder Research 2012 UPDATE”
Website: http://www.iacc.hhs.gov
Kelly,Adrian B. et al.(2008) “Autism Spectrum Symptomatology in Children:The Impact of Family and Peer Relationships” J Abnorm Child Psychol
Organisation mondiale de la Santé (2001) “Rapport sur la santé dans le monde 2001 : La santé mentale : nouvelle conception, nouveaux espoirs ”
Patterson, Stephanie (2011) “A systematic review of training programs for parents of children with autism spectrum disorders: Single subject
contributions” Autism.
Sénéchal, Carole et des Rivières-Pigeon, Catherine (2009) “Impact de l’autisme sur la vie des parents “ Érudit
75
75 75
9- Parent respite
Recherche académique:
• Hayden, Mary F. and Heller, Tamar (1997) - “Support, Problem-solving/coping Ability, and Personal Bureden of Younger and Older Caregivers of
Adults with Mental Retardation” Mental Retardation
• Heller, Tamar and Caldwell, Joe (2005) - “Brief Research Report Impact of a Consumer-Directed Family Support Program on Reduced Out-of-Home
Institutional Placement” Journal of Policy and Practice in Intellectual Disabilities
• Mouridsen, Svend Erik and al. (2007) – “Psychiatric Disorders in the Parents of Individuals with Infantile Autism:A Case-Control Study ”
Psychopathology
Documents politiques:
• Centre de santé et de services sociaux de Québec-Nord (2009) “Bottin des ressources de répit, dépannage et gardiennage de la Capitale-Nationale
pour les personnes présentant une déficience physique (DP), intellectuelle (DI) ou un trouble envahissant du développement (TED) ”
• Définition du problème, description de la clientèle et proposition d’un plan d’action ”
• Définition du projet, description de la clientèle et proposition d’un plan d’action ”
• Emergo Respite Services, Autism and other PDDs (2013) “Annual Report Fiscal Year 2013”
• Fédération de l’autisme du Québec. “Ressources financières” http://www.autisme.qc.ca/ressources/ressources-financieres.html
• Fondation Miriam (2013) “Projet de création de maisons de répit
• Fondation Miriam (2013) “Projet de garderie spécialisée pour que les enfants ayant des troubles du développement en harmonie avec leurs pairs
• Gouvernement du Quebec. Commission des normes du travail “Les gardiens et gardiennes de personnes et les normes du travail ” Centre
d'information et de référence de la Capitale-Nationale et de la Chaudière-Appalaches Résultats de la recherche
• Gouvernement du Quebec. Ministère de la famille (2013) “Rapport annuel 2012-2013 ”
• Lauzon, Jo-Ann (2007) “Fédération québécoise de l'autisme et des autres troubles envahissants du développement : Cueillette d’information sur le
degré de satisfaction des parents ”
• Liste de différentes ressources de répit
76
76 76
10- Medical and dental care
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Balogh, R. S., Hunter, D. and Ouellette-Kuntz, H. (2005), Hospital Utilization among Persons with an Intellectual Disability, Ontario, Canada, 1995–
2001. Journal of Applied Research in Intellectual Disabilities, 18: 181–190.
Boulenger, Stéphanie and Castonguay, Joanne. (2012)”Portrait de la rémunération des médecins de 2000 à 2009”. Cirano.
Chebuhar, Amy. (2013) “Using Picture Schedules in Medical Settings for Patients With an Autism Spectrum Disorder”. Journal of Pediatric Nursing.
Croen, Lisa A. et al. (2006) “A Comparison of Health Care Utilization and Costs of Children With and Without Autism Spectrum Disorders in a Large
Group-Model Health Plan”. Journal of the American Academy of Pediatrics.
Farrugia, David. (2009) “Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder”.
Sociology of Health & Illnes.
Frazier, Thomas W. et al. (2011) “Prevalence and Correlates of Psychotropic Medication Use in Adolescents with an Autism Spectrum Disorder with
and without Caregiver-Reported Attention-Deficit/Hyperactivity Disorder”. Journal of child and adolescent psychopharmacology
Freitag, Christine M. et al. (2009) “Total Brain Volume and Corpus Callosum Size in Medication-Naïve Adolescents and Young Adults with Autism
Spectrum Disorder” Biol Psychiatry.
Haveman, Meindert. et al. (2010) “Major Health Risks in Aging Persons With Intellectual Disabilities: An Overview of Recent Studies” Journal of Policy
and Practice in Intellectual Disabilities
Henny M. et al. (2008) “Managing Health Problems in People with Intellectual Disabilities”. British Medical Journal.
Hogg, J. et al. (2001) “Healthy Ageing – Adults with Intellectual Disabilities: Ageing and Social Policy”. Journal of Applied Research in Intellectual
Disabilities.
Joint Advisory Committee in Special Care Dentistry (2003) “A Case of Need Proposal for a Specialty In Special Care Dentistry”
Kancherla, Vijaya. et al. (2013) “Dental care among young adults with intellectual disability” Research in Developmental Disabilities
Lennox, N. G. and Kerr, M. P. (1997) “Primary health care and people with an intellectual disability: the evidence base” Journal of Intellectual Disability
Research.
Lennox, Nicholas. et al. (2007)”Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster
randomized trial”. International Journal of Epidemiology.
Levy, Susan E. et al. (2010) “Autism Spectrum Disorder and Co-occurring Developmental, Psychiatric, and Medical Conditions Among Children in
Multiple Populations of the United States’. JDBP.
Nombre de médecin et montant moyen en 2010 selon le mode de rémunération et la spécialité.
http://medecinquebec.files.wordpress.com/2012/09/tab4-1024x923.jpg
Ouellette-Kuntz, Hélène. (2003) “Addressing Health Disparities Through Promoting Equity for Individuals with Intellectual Disability”. Canadian
Institutes of Health Research.
Ouellette-Kuntz, Hélène. et al.(2005) “Addressing Health Disparities Through Promoting Equity for Individuals with Intellectual Disability”. Canadian
Journal of Public Health.
77
77 77
10- Medical and dental care (cont’d)
•
•
•
•
•
•
•
•
Patja, K. et al.(2001) “Cause-specific mortality of people with intellectual disability in a population-based, 35-year fallow up study”. Journal of
Intellectual Disability Research.
Racine, Eric. et al. (2014)”Ethics challenges of transition from paediatric to adult health care services for young adults with neurodevelopmental
disabilities”. Pulsus Group Inc.
Shea, Lindsay et al. (2013) “Genetic testing and genetic counseling among medicaid-enrolled children with autism spectrum disorder in 2001 and
2007”. Human genetics.
Sullivan, William F. et al. (2011) “Primary care of adults with developmental disabilities”. Canadian Family Physician - Le Médecin de famille canadien.
Thorpe, L. et al. (1999) “Healthy Ageing - Adults with Intellectual Disabilities Biobehavioural Issues”. Aging Special Interest Research Group of the
International Association for the Scientific Study of Intellectual Disabilities.
Wang, Li. et al.(2012) “Healthcare Service Use and Costs for Autism Spectrum Disorder: A Comparison Between Medicaid and Private Insurance”. J
Autism Dev Disord
Wilkinson, Joanne E. and Cerreto, Mary C. (2008) “Primary Care for Women with Intellectual Disabilities”. JABFM.
Wong, V. C. N. (2008) “Use of Complementary and Alternative Medicine (CAM) in Autism Spectrum Disorder (ASD): Comparison of Chinese and
Western Culture (Part A)” J Autism Dev Disord.
78
78 78
11- Other challenges
•
•
•
•
Deputy Ministers’ Review of Community Living British Columbia (2011) - “Improving Services to People with Developmental Disabilities”
Dudley, Carolyn and al. (2012) “Mind the Gap: The Missing Discussion Around Transportation for Adolescents and Adults With Autism Spectrum
Disorder - Policies across the Provinces from a Lifespan Perspective: Transportation Report”
Middletown Center for Autism “Transition ”
www.middletownautism.com
79
79 79
12- Case Studies
Colombie Britanique:
• “Auton (Guardian ad litem of) v. British Columbia (Attorney General)” www.GlobalHealthRights.org
• ACT – Autism Community Training Society (2008) “The Diagnostic Process in British Columbia”
• Attorney General of British Columbia and Medical Services Commission of British Columbia (2004) “Appellants/Respondents on cross-appeal”
• BC Ministry of Children and Family Development (2013) “MCFD Operational & Strategic Directional Plan ”
• BC Ministry of Children and Family Development (2013) “New funding option supports transitions to adulthood” www.gov.bc.ca/connect
• Manfredi, Christopher P. and Maioni, Antonia (2005) “Reversal of Fortune: Litigating Health Care Reform in Auton v. British Columbia” Reversal of
Fortune
Ontario:
• Geneva Center for Autism (2014) “Autism training event” Autism
• Housing Study Group (2013) “Ending the wait -An Action Agenda to address the Housing Crises confronting Ontario Adults with Developmental
Disabilities”
• McMorris, Carly and Schroeder, Jessica (2012) – “March break and summer funding for children and youth with Autism Spectrum Disorder: A report
on parent views of the programs” Autism Ontario
• Ministry of Children and Youth Services “The Estimates 2012-13”
• Ministry of Community and Social Services “The Estimates, 2012-13”
• Ministry of Education (2013) “Education Funding -Technical paper 2013-14”
80
80 80
13- CRDITED data
•
•
•
•
•
Carte CRDITED au Quebec
Cohn & Wolfe. “ASD: Canadian Organizations – Part one of a traditional stakeholder audit”
CRDITED (2013) “Cotisation 2013-2014”
CRDITED / MSSS (2012) “Dépenses par programme, par centre d'activités, 2011-2012”
MSSS. (2013) “Mode d’allocation des ressources : Présentation aux directeurs généraux de la région de Montréal.”
Bas Saint-Laurent:
• CRDITED Bas Saint-Laurent. Tables and financials
CROM:
• CROM (2013) “Annual report ”
• CROM (2014) “Une liste d’attente démesurée” Nouvelles du conseil
• Moxness, Katherine and Vincelli, Frank (2009) “Access Plan 2009-2012” West Montreal Readaptation Centre
Flores:
• Centre du Flores. (2013) “Synthèse planification stratégique : S’allier pour faire la différence”
• CRDITED Flores (2011) Rapport Annuel.
• CRDITED Flores (2012) Rapport Annuel.
• CRDITED Flores (2013) “Portrait des services offerts”
FQCRDITED:
• FQCRDITED (2012) “Le réseau en chiffres ”
• FQCRDITED (2012) “Présentation au Ministre Dr. Hébert ”
• FQCRDITED (2013) “Distribution du personnel de fonction 2008 à 2013 ”
• FQCRDITED (2013) “Évaluation des coûts pour éliminer les listes d'attentes basé sur les données au 31 mars 2013 (AS 485) ”
• FQCRDITED (2013) “Lieu résidence inscrits DI-TED ”
• FQCRDITED (2013) “Liste d’attente par âge : Communautaire ”
• FQCRDITED (2013) “Liste d’attente par âge : Intégration au travail ”
• FQCRDITED (2013) “Liste d’attente par âge : RNI ”
• FQCRDITED (2013) “Liste d’attente pour un premier service par âge 2008 à 2013 ”
• FQCRDITED (2013) “Total des usagers desservis ”
• FQCRDITED (2014) “Budget du Québec 2014-2015 : Les CRDITED préoccupés par l’accès aux services et le maintien de l’offre de services
spécialisés en DI et en TED ”
• FQCRDITED (2014) “Cotisation 2013-2014 ”
• FQCRDITED “Sommaires des retributions RI-RTF ”
81
81 81
13- CRDITED data (continued)
Centre Miriam:
• Benezra, Esther. (2010) “Miriam Homes and Services”
• Miriam Homes and Services (2006) “Autism Specific Services for Children and Adolescents Aged 6-21”
• Miriam Homes and Services (2012) “Annual Report”
• Miriam Homes and Services (2013) “Annual Report”
• Miriam Homes and Services (2014) “Liste d’attente”
Montreal:
• CRDITED de Montréal (2013) “Rapport annuel de gestion”
• CRDITED de Montréal (2014) “Organigramme”
Saguenay:
• CRDITED Saguenay Lac-Saint-Jean. (2013) “Rapport annuel de gestion”
82
82 82
Contact
Malvina Klag
Chief Strategy Officer,
See Things My Way Centre for Innovation
Montreal (QC)
[email protected]
22/12/2014
83
83 83

A bold strategy for autism spectrum disorder and intellectual disability

Transcription

Documents pareils

Nouveaux documents et informations disponibles au

Caroline Hearst I realised I was probably autistic as a result of

Mai - CRDITED de la Montérégie-Est

Dix choses que je peux faire chez moi en utilisant les

Le possesseur de cette carte est atteint d`autisme

brands, shops, posters, catalogues et cartoons - sciences

Résumé - Equine Assisted Therapy Hub

bentall kennedy lève le voile sur l`autisme par son appui à la

De quels facteurs importants doit-on tenir compte pour évaluer les