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Implementing Comprehensive Health Checks for Adults with Intellectual and Developmental Disabilities
Implementing Comprehensive Health Checks for Adults with
Intellectual and Developmental Disabilities
Presenters: Jillian Achenbach and Karen McNeil
Relationships with financial sponsors:
Grants/Research Support: none
Speakers Bureau/Honoraria: Karen: support to attend colloquium in Toronto in
2017 and 2000.00 honorarium for participating in the development of the
guidelines.
Consulting Fees: Jill: consulting fees from DGI Clinical (2019), and from DDPCI
for developing a set of case-based modules to teach core CFMC competencies
and for preparing and facilitating a clinical support network (2012-2013)
Patents: none
Declare: No conflicts of interest
At the end of the workshop participants will be
able to:
Employ evidence and tips and tools for
implementing annual health checks for
people with IDD in primary care
Navigate a valuable primary care website
Utilize agenda setting, data gathering tools
and billing codes to facilitate your
encounters
Objectives
In the 2018 Canadian Consensus Guidelines IDD refers to :
Lifelong limitations in intellectual
functioning and conceptual, social, or
practical skills that emerge in persons
before the age of 18 years (Wehmeyer ML,
A Comprehensive Guide to IDD 2017)
Encompasses learning disabilities (as used
in the UK )
IDD can include patients with ASD, FASD
and cerebral palsy. Not all patients with
these diagnoses have IDD.
IDD
Definitions
Take a moment to test your knowledge
Question 1
How many years earlier do people with IDD
die compared to the general population?
a) 8 years
b)18years
c) 28 years
Heslop P. et al. Confidential inquiry into premature deaths of people with intellectual and developmental disabilities
In the UK: a population-based study. Lancet 2014;383 889-95.
McCreary B. et al. Longevity and Causes of Death in Persons with Intellectual Disabilities Residents at Rideau Regional Centre (1979‐2008):
Implications for Community Care. Unpublished Report [available from author: Queen's University, Kingston, Ontario, Canada, K7M 8A6].
Question 2
The most common cause of death in the IDD
population is:
a) Cancer
b) Circulatory
c) Respiratory
Hosking F. et al. Mortality among adults with IDD in England comparison with the general population.
Am J Public Health 2016 Aug;106 (8) 1483-90.
Stankiewicz E. et al. Patterns of Mortality among adults with IDD in Ontario. Canadian Journal of Public Health
Dec 2018; Vol 109 Issues 5-6, 866=72.
Question 3
Health assessments or physical exams that
attend to specific health issues of people with
IDD increase preventive care actions and
disease detection.
a) true
b) false
Sullivan W. et al. Primary care of adults with intellectual and developmental disabilities
2018 Canadian consensus guidelines, Canadian Family Physician Vol 64: April 2018.
Question 4
Preventative care and cancer screening is
less likely to be received by people with IDD
than those in the general population.
a) True
b) false
Sullivan W. et al. Primary care of adults with intellectual and developmental disabilities
2018 Canadian consensus guidelines, Canadian Family Physician Vol 64: April 2018.
Durbin J. et al. Improving the Quality of Primary care for adults with intellectual and developmental disabilities-
Value of the periodic Health Exam, Canadian Family Physician; APRIL 2019;65 S59-65
Case: Sarah
Communicates by gestures and vocals
Ambulatory, BMI 35, PMH unremarkable.
No medications
Mom had breast cancer at 48yr
You have not seen her in 2 years. In the past
she was very timid and could not cooperate for
the physical exam.
Today she is “lethargic and not herself”.
Her mom tells you she is constipated.
You recall people with IDD should have annual
health assessments.
38 yo woman
with severe IDD
secondary to
Down Syndrome
Primary Care
Guidelines
Where to access the Guidelines
https://ddprimarycare.surreyplace.ca
Strongly Recommend Recommend
Indicates clinician’s top recommendations
Clinicians’ Top 10 Picks
• Identify a support person and provide sufficient
time and supports at appointments
• Assess decision-making capacity
• Perform a periodic comprehensive health
assessment and develop a health action plan
• Review medications regularly
Guidelines
Clinicians’ Top 10 Picks
• Ask about patients’ relationships, intimacy,
sexuality and sexual education
• Consult a physical or occupational therapist
regarding adaptations to promote mobility and
physical activity
• Use tools adapted for people with IDD to promote
education and uptake of cancer screening tests
Guidelines
Clinicians’ Top 10 Picks
• Develop a diagnostic formulation (eg. H.E.L.P **)
that considers the causes of behaviours that
challenge
• Screen for antecedents, life events, and other
triggers of mental distress
• Explore for possible trauma and be alert for signs
of PTSD
Guidelines
**H.E.L.P. When Behaviours Communicate Distress
https://machealth.ca/programs/curriculum_of_cari
ng/m/mediagallery/2225
“Perform a periodic comprehensive health
assessment using guidelines for primary care
of people with IDD and adapted tools (e.g.
Preventative Care Checklist). Include a
physical health examination, mental health
assessment, and review of the adequacy of
financial and other community support”
Health
Checks
”The traditional annual physical examination
of asymptomatic adults is not supported by
evidence of effectiveness and may result in
harm.”
Why is this recommendation different for the IDD population?
Canadian Task
Force on
Preventative
Health Care
People with IDD die earlier
Disparities in health exist
■ Venue for discussion
■ Adds balance to the inability to report
■ Opportunity to consider new symptoms and signs
■ Opportunity to examine the patient head to toe
■ Picks up on unmet needs
■ Simple things that can help socially and behaviorally.
■ Significant diagnoses like CHF, cancer and fractures.
Implementing annual health checks
• One barrier
• One enabler
Small Group Discussion – 5 min
Case: Sarah
Communicates by gestures and vocals
Ambulatory, BMI 35, PMH unremarkable.
No medications
Mom had breast cancer at 48yr
You have not seen her in 2 years. In the past
she was very timid and could not cooperate for
the physical exam.
Today she is “lethargic and not herself”.
Her mom tells you she is constipated.
You recall people with IDD should have annual
health assessments.
38 yo woman
with severe IDD
secondary to
Down Syndrome
Health Checks
Barriers and Enablers
Large Group Sharing
How do we address these
potential barriers ?
• Time
• Consent
• Communication & sensitivities
• Cognitive and physical ability
to cooperate
• Documentation
Time
Full physical for Adults with IDD (36 units)
Code: 03.04
Enhanced IDD visit (19.5 units)
Code: 03.03
Other codes
ConsentMaximizing Capacity for Decision Making
Communication
Better
receptive
than
expressive
language
ability
Allow 10
sec to
respond to
questions
Ask
permission,
go slow,
check in
often.
Develop an
action plan
that travels
with the
patient
Cognitive and Physical Ability to Participate
Physical exam video
https://vimeo.com/145154734?forcedownload=true
Documentation:
Systems enquiry
Health Check
Documentation: Action Plan (CHAP 2007)
Date of
diagnosis
Diagnoses/
condition
Action Who is
responsible
Date to be
completed
2019/11/28 Constipation PEG 17 g Group home On going
2019/11/28 Constipation Bristol stool
chart
Group home On going
Finding Tools for Sarah
Todays Visit
Monitoring tools
Health watch table
Cancer screening tools
Where to Access the Toolshttps://ddprimarycare.surreyplace.ca
Health
Information
Exchange
Mastebroek M. Experiences of patients with intellectual disabilities and careers GP health information exchanges: a qualitative study.
Family Practice, 2016, Vol. 33, No 5, 543-550
Sarah has not been herself, lethargic,
not eating as well, taking longer for
BM’s, q4-5 days, few episodes of
blood on wiping.x
Today’s Visitx
In our case…
In our case…
What Else Could Sarah be Communicating?
Health Watch Table
Cancer screening and other health
promotion tools
WWW.HCARDD.CA
Community Resources
The Disability Support Program (DSP) serves
children, youth and adults with intellectual
disabilities, long-term mental illness and physical
disabilities in a range of community-based,
residential and vocational/day programs.
Department of Community
Services
https://novascotia.ca/coms/disabilities/index.\html
SLPs
OTs
Physiotherapists
Psychologists
http://crystallowepearce.ca/
https://www.ericabaker.ca/
https://www.corkumandassociates.net
/contact
Allied Health Professionals
COAST- Dual Diagnosis Program (Intellectual
Disability in combination with Mental Illness)
Assessments
Short-term treatment and support
Plan for leaving the hospital and follow-up
Working in collaboration with family
physicians and other community health
care providers
Community Outreach
Assessment Support and
Treatment Team
CCOG is a consultation and assessment
service offered to persons with IDD in the
Western Region of Nova Scotia
Consultation on complex needs with
assessment and recommendation re: further
supports
Professional development opportunities
Cambridge Community Outreach
Group
http://www.krrc.ns.ca/cambridge-community-outreach-group/
ABA Halifax –Network of Board Certified
Behaviour Analysts
https://www.abahalifax.com/
Bartimaeus - specialized services,
supporting agencies, organizations and
institutions, that work with children,
adolescents, adults and seniors who are
experiencing behavioural, social, emotional
and psychiatric difficulties.
http://www.bartimaeus.com/
Behavioural Support
Adult Capacity and Decision Making Act
The Adult Capacity and Decision-making Act
replaced the Incompetent Persons Act in 2017.
This new law is for adults who cannot make
some or all decisions for themselves. They may
not be able to make some decisions because of
a learning disability, mental health problems,
brain injury, or for other reasons.
This law allows another person to make some
important decisions for them.
Adult Capacity and Decision Making Act
FAQs - https://novascotia.ca/just/pto/FAQ-
adult-capacity-decision.asp
Representation Guide -
https://novascotia.ca/just/pto/forms/adult-
capacity-adult-representation-guide.pdf
Capacity Assessors in NS -
https://novascotia.ca/just/pto/forms/Adult-
Capacity-and-Decision-making-Act-Allied-
Health-Roster.pdf
Finding a lawyer -
https://www.legalinfo.org/how-lisns-can-
help/i-need-a-lawyer
Central 902-473-1564
Eastern 902-867-4500 (4732)
Northern 902-893-6314
Western 902-365-1701 (2976)
NSHA Ethics Department
https://www.cdha.nshealth.c
a/ethics-support/index
PATH - A person-centered planning tool
that helps individuals plan for their future.
Ready Willing and Able - Increasing the
labor force participation of people with IDD
or ASD
Inclusion Support Facilitator
Increasing access to RDSP program
Spreading the word about healthy
sexuality and consent for people with
intellectual disabilities.
NS Association for Community
Living
https://www.nsacl.ca/
Transition Support Program - Holistic,
person centred support for people IDD, and
their families, as they experience life
changes.
Peer support groups for people who have
IDD or a loved one with IDD
Halifax Association for
Community Living
https://www.halifaxacl.com/
A community-based organization that fosters
understanding, acceptance, and inclusion for
those living with autism spectrum disorder
(ASD) throughout Nova Scotia.Autism NS
http://www.autismnovascotia.ca/
Achieve Program at NSCC
Applicants must be a high school graduate between
the ages of 18-21 years of age.
High School Diploma including a transcript that
indicates Individual Program Plan (IPP) designated
credit(s) in any Grade 12 course or your highest
Math course.
Post-Secondary Education
https://www.nscc.ca/learning_programs/programs/PlanDescr.aspx?prg=ACHV&pln=ACHIEVECOC
Department of Education Post-Secondary Disability Services
rps.ednet.ns.ca
Nova Scotia Community College – Disability Services
https://www.nscc.ca/services/disability_services.asp
Atlantic Center of Support for Persons with Disabilities (SMU)
www.smu.ca/administration/atlcentre
Mount Saint Vincent – Disability Services
https://www.msvu.ca/en/home/campus-life/accessibility-
services/default.aspx
Dalhousie University Student Accessibility Services
https://www.dal.ca/campus_life/health-and-wellness/services-
support/student-health-and-wellness/LD-services.html
Post-Secondary Education
Autism Nova Scotia- Autism Works
www.autismnovascotia.ca/our-programs/autism-
works
Teamwork Cooperative
www.teamworkcooperative.ns.ca
reachAbility
www.reachability.org
Community Association for People for Real
Enterprise https://capre.org/
Vocational Services
In HRM:
Building Futures
DASC
Lake City Enterprises
New Leaf Enterprises
Prescott Group
Vocational Services
https://directionscouncil.org/member-agencies/
Special Olympics
https://www.specialolympicsns.ca/contact-sons/
SMILEProvides persons with varying disabilities a
unique physical activity experience in order to
improve their total development as individuals
https://smile.acadiau.ca/home.html
Thank you
