Public health perspectives on disability Thilo Kroll Social
Dimensions of Health Institute of the Universities of Dundee and St
Andrews www.sdhi.ac.uk
Slide 2
Injury Illness Injury Illness Disability Injury Illness Injury
Illness Traditional Public Health Approach: Primary prevention
model Public Health Perspective on Disability: Prevention of
secondary conditions Medical / functionalistic Biopsychosocial /
environmental / participation
Slide 3
Disability and chronic illness are not the same!!!!!
Slide 4
Some basic distinctions Disability may be experienced without
the presence (congenital, accident) or diagnosis of chronic illness
Chronic illness may not necessarily be disabling if (self-)managed
well (e.g. diabetes, asthma) Disability does not mean poor health
poor health may however result due to a thinner margin of health
(DeJong et al., 2003) or due to barriers in accessing needed health
care services Illness is a medical model concept that locates the
problem in the individual, disability is a social or relational
concept that locates problems at the intersection of individual and
environment An event, like a stroke may be the trigger of a
disabling situation, while the medical event is medically managed;
life with the sequelae of this event will have to be managed within
the family and societal context (it is not a question of managing a
chronic disease but of managing life) A chronic illness may require
regular medical monitoring and treatment, a person with a
disability may not necessarily need more health care than a person
without a disability but needs equitable access to services
Slide 5
Ed Roberts Disability Rights Activist and father of the
American Disability Rights Movement Polio and used an Iron Lung
Fought for the right of a university education Fought for de-
institutionalisation Activism led to the first independent living
center in Berkeley, CA When his search for housing met resistance
in part because of the 800 pound iron lung that he slept in at
night, the director of the campus health service offered him a room
in an empty wing of the Cowell Hospital. Roberts accepted on the
condition that the area where he lived be treated as dormitory
space, not a medical facility. His admission broke the ice for
other students with severe disabilities who joined him over the
next few years at what evolved into the Cowell Residence
Program.
Slide 6
Paul Hunt and UPIAS (Union http://hcdg.org/definition.htm What
we are interested in, are ways of changing our conditions of life,
and thus overcoming the disabilities which are imposed on top our
physical impairments by the way this society is organised to
exclude us. UPIAS Founding Statement http://disability-
studies.leeds.ac.uk/files/library/UPI AS-UPIAS.pdf impairment as
"lacking part of or all of a limb, or having a defective limb,
organism or mechanism of the body" and disability as "the
disadvantage or restriction of activity caused by contemporary
organisation which takes no or little account of people who have
physical impairments and thus excludes them from the mainstream of
social activities"
Slide 7
UPIAS (contd) We reject also the whole idea of "experts" and
professionals holding forth on how we should accept our
disabilities, or giving learned lectures about the "psychology" of
disablement. We already know what it feels like to be poor,
isolated, segregated, done good to, stared at, and talked down to
far better than any able-bodied expert. We as a Union are not
interested in descriptions of how awful it is to be disabled. What
we are interested in, are ways of changing our conditions of life,
and thus overcoming the disabilities which are imposed on top our
physical impairments by the way this society is organised to
exclude us. In our view, it is only the actual impairment which we
must accept; the additional and totally unnecessary problems caused
by the way we are treated are essentially to be overcome and not
accepted. We look forward to the day when the army of "experts" on
our social and psychological problems can find more productive work
UPIAS Founding Statement http://disability-
studies.leeds.ac.uk/files/library/UPI AS-UPIAS.pdf
Slide 8
Vic Finkelstein http://www.theguardian.com/society/2011/dec/2
2/vic-finkelstein Co-founder of UPIAS Civil rights and
Anti-Apartheids activist in 1960s, 1970s Wheelchair user,
psychologist Rejected compensatory or medical understanding of
disability Attention towards structural and social barriers that
oppress people with physical impairments and render them disabled
Foundation for the social model of disability in the UK
Slide 9
Experience matters Nothing About Us Without Us (Charlton, 1998;
Stone, 1997) has often been invoked to demand the inclusion of
people with disabilities in policy making and research concerning
disability
Slide 10
Americans with Disabilities Act (ADA) Disability Discrimination
Act (DDA) 1972 Union of the Physically Impaired Against Segregation
(UPIAS) UN Convention on the Rights of Persons with a Disability
1990 2006 1995 2001 WHO International Classification of
Functioning, Disability and Health (ICF) 1962 Roots US Independent
Living Movement
Slide 11
Definitions Public health Statistical definitions
(Disability-adjusted life years or DALYs: Years lost due to
premature mortality plus years of life with a disability adjusted
for severity
Slide 12
Medical model The medical model understands a disability as a
physical or mental impairment of the individual and its personal
and social consequences. It regards the limitations faced by people
with disabilities as resulting primarily, or solely, from their
impairments. A proxy for all that is wrong with traditional
attitudes to disability Personal tragedy theory or the individual
model (Oliver, 1996) Impairment vs disability Very difficult to
find in practice. Very few practitioners subscribe to
uni-directional causal models (Kelly & Field, cf Shakespeare,
2006)
Slide 13
Social model The social model understands disability as a
relation between an individual and her social environment: the
exclusion of people with certain physical and mental
characteristics from major domains of social life. Their exclusion
is manifested not only in deliberate segregation, but in a built
environment and organized social activity that preclude or restrict
the participation of people seen or labelled as having
disabilities. Minority group model
Slide 14
Social Model Hence disability, according to the social model,
is all the things that impose restrictions on disabled people;
ranging from individual prejudice to institutional discrimination,
from inaccessible buildings to unusable transport systems, from
segregated education to excluding work arrangements, and so forth.
Further, the consequences of this failure do not simply and
randomly fall on individuals but systematically upon disabled
people as a group who experience this failure as discrimination
institutionalised throughout society - Oliver 1996
Slide 15
Nordic relational model (Tssebro, 2004, cf Shakespeare, 2006)
Funksjonshemming = disability (disabling barrier; not disabled as a
person descriptor) 1967 Stortingsmelding 88 reversed adaptation
Rather than expecting that disabled people one-sidedly shall adapt
to society, we also need to adapt the environment to them
Slide 16
Core features of the Nordic relational approach Disability is a
mismatch between the individual and the environment (impairment +
environment) A disability is also situational (e.g. visual
impairment and using a telephone) A disability is relative, a
continuum rather than a dichotomy
Slide 17
UN Convention on the Rights of Persons with Disabilities (2006)
Article 1 Purpose The purpose of the present Convention is to
promote, protect and ensure the full and equal enjoyment of all
human rights and fundamental freedoms by all persons with
disabilities, and to promote respect for their inherent dignity.
Persons with disabilities include those who have long-term
physical, mental, intellectual or sensory impairments which in
interaction with various barriers may hinder their full and
effective participation in society on an equal basis with others.
http://www.un.org/disabilities/convention/con
ventionfull.shtml
Slide 18
Convention on the Rights of Persons with Disabilities What is
unique about the Convention? Both a development and a human rights
instrument A policy instrument which is cross-disability and
cross-sectoral Legally binding
Slide 19
Convention on the Rights of Persons with Disabilities A
Paradigm Shift The Convention marks a paradigm shift in attitudes
and approaches to persons with disabilities. Persons with
disabilities are not viewed as "objects" of charity, medical
treatment and social protection; rather as "subjects" with rights,
who are capable of claiming those rights and making decisions for
their lives based on their free and informed consent as well as
being active members of society. The Convention gives universal
recognition to the dignity of persons with disabilities.
Slide 20
Convention on the Rights of Persons with Disabilities What is
Disability? The Convention does not explicitly define disability
Preamble of Convention states: Disability is an evolving concept,
and that disability results from the interaction between persons
with impairments and attitudinal and environmental barriers that
hinders full and effective participation in society on an equal
basis with others Article 1 of the Convention states: Persons with
disabilities include those who have long-term physical, mental,
intellectual or sensory impairments which in interaction with
various barriers may hinder their full and effective participation
in society on an equal basis with others.
Slide 21
Convention on the Rights of Persons with Disabilities What is
Disability? Disability results from an interaction between a non-
inclusive society and individuals: Person using a wheelchair might
have difficulties gaining employment not because of the wheelchair,
but because there are environmental barriers such as inaccessible
buses or staircases which impede access Person with extreme
near-sightedness who does not have access to corrective lenses may
not be able to perform daily tasks. This same person with
prescription eyeglasses would be able to perform all tasks without
problems.
Slide 22
Convention on the Rights of Persons with Disabilities Rights in
the Convention Equality before the law without discrimination
(article 5) Right to life, liberty and security of the person
(articles 10 & 14) Equal recognition before the law and legal
capacity (article 12) Freedom from torture (article 15) Freedom
from exploitation, violence and abuse (article 16) Right to respect
physical and mental integrity (article 17) Freedom of movement and
nationality (article 18) Right to live in the community (article
19) Freedom of expression and opinion (article 21) Respect for
privacy (article 22) Respect for home and the family (article 23)
Right to education (article 24) Right to health (article 25) Right
to work (article 27) Right to adequate standard of living (article
28) Right to participate in political and public life (article 29)
Right to participation in cultural life (article 30)
Slide 23
UN CRPD Article 25 - Health Article 25 - Health States Parties
recognize that persons with disabilities have the right to the
enjoyment of the highest attainable standard of health without
discrimination on the basis of disability. States Parties shall
take all appropriate measures to ensure access for persons with
disabilities to health services that are gender-sensitive,
including health-related rehabilitation. In particular, States
Parties shall: Provide persons with disabilities with the same
range, quality and standard of free or affordable health care and
programmes as provided to other persons, including in the area of
sexual and reproductive health and population-based public health
programmes; Provide those health services needed by persons with
disabilities specifically because of their disabilities, including
early identification and intervention as appropriate, and services
designed to minimize and prevent further disabilities, including
among children and older persons;
Slide 24
UN CRPD (continued) Provide these health services as close as
possible to peoples own communities, including in rural areas;
Require health professionals to provide care of the same quality to
persons with disabilities as to others, including on the basis of
free and informed consent by, inter alia, raising awareness of the
human rights, dignity, autonomy and needs of persons with
disabilities through training and the promulgation of ethical
standards for public and private health care; Prohibit
discrimination against persons with disabilities in the provision
of health insurance, and life insurance where such insurance is
permitted by national law, which shall be provided in a fair and
reasonable manner; Prevent discriminatory denial of health care or
health services or food and fluids on the basis of disability.
Slide 25
Health Condition (disorder/disease) activities Body functions
and structures participation environmental factors person factors
ICF - International Classification of Functioning, Disability and
Health (WHO, 2001)
Slide 26
Diversity of disability
Slide 27
Richard Devylder
http://www.youtube.com/watch?v=l96aNpaZ-xc
Slide 28
2011
Slide 29
Challenges in counting disability What is it? - Definition and
operationalisation How is it counted/measured? Who collects the
data for what purpose? What is the socioeconomic context
(resources)? What about social, economic development over time? How
is it legislated?
Slide 30
Slide 31
Prevalence estimates WHO World Health Survey 2004 WHO Global
Burden of Disease 2004 WHO ICF Framework (2001) Washington Group on
Disability Statistics (UN Statistical commission, 2001): 6
questions (e.g. Do you have difficulty seeing, even if wearing
glasses?)
Slide 32
Report United Nations Expert Group Meeting on Disability Data
and Statistics, Monitoring and Evaluation: The Way Forward- a
Disability- Inclusive Agenda Towards 2015 and Beyond UNESCO / UN
DESA Paris, France (8-10 July 2014)
http://www.un.org/disabilities/documents/eg
m2014/EGM_FINAL_08102014.pdf
Slide 33
Setting the scene An estimated 1 billion people (15% of the
worlds population) are living with disabilities (WHO World Report
on Disability, 2011) In all regions, people with disabilities
disproportionately represented among the poorest An estimated 80%
of people with disabilities live in developing countries Ageing and
growing chronic health conditions will increase the number of
people with disabilities
Slide 34
Background: Millenium Development Goals and Disability The
Millennium Development Goals (MDGs) represent a concerted effort to
address global poverty. Yet there is a striking gap in the current
MDGs: persons with disabilities, that is, the estimated 1 billion
people worldwide who live with one or more physical, sensory
(blindness/deaf- ness), intellectual or mental health impairments,
are not mentioned in any of the 8 Goals or the attendant 21 Targets
or 60 Indicators, nor in the Millennium Declaration (UN DESA Report
2011). This absence is of particular concern because a growing
consensus of disability advocates, experts and researchers find
that the most pressing issue faced globally by persons with
disabilities is not their specific disability, but rather their
lack of equitable access to resources such as education,
employment, health care and the social and legal support systems,
resulting in persons with disabilities having disproportionately
high rates of poverty (UN DESA Report 2011).
Slide 35
Background: UN CRPD UN Convention on the Rights of Persons with
Disabilities (UN CRPD, 2006) 159 State signatories (151
ratifications) as of 15 Dec 2014 The purpose is to promote, protect
and ensure the full and equal enjoyment of all human rights and
fundamental freedoms by all persons with disabilities, and to
promote respect for their inherent dignity. Adopts a social model
perspective, a shift away from seeing persons with disabilities as
"objects" of charity, medical treatment and social protection
towards viewing persons with disabilities as "subjects" with
rights, who are capable of claiming those rights and making
decisions for their lives based on their free and informed consent
as well as being active members of society (UN Convention).
Slide 36
Defining and operationalising disability according to the UN
Convention on the Rights of Persons with Disabilities The
Convention does not explicitly define disability Preamble of
Convention states: Disability is an evolving concept, and that
disability results from the interaction between persons with
impairments and attitudinal and environmental barriers that hinders
full and effective participation in society on an equal basis with
others Article 1 of the Convention states: Persons with
disabilities include those who have long- term physical, mental,
intellectual or sensory impairments which in interaction with
various barriers may hinder their full and effective participation
in society on an equal basis with others. Convention on the Rights
of Persons with Disabilities
Slide 37
Challenges No common definitions, concepts, standards and
methodologies within and between UN Member states Inconsistencies
and incomparability of data over time and between countries
Counting (categories) vs measuring (degree, relationally weighted
against environmental characteristics) Need for a clearer picture
of what it means to live with a disability access to all mainstream
policies, systems, services (e.g. education, employment, leisure,
transportation) - inclusion
Slide 38
Challenges 2 Resources to support data collection Fidelity and
quality of data Capacity for data collection and training of
enumerators Geographical reach of data collection (infrastructure)
Inclusiveness (e.g. institutionalised population; enabling assisted
response; alternative response formats)
Slide 39
International and national efforts: search for indicators
Regionally: e.g. Academic Network of European Disability Experts
(ANED) since 2007 Multiple Indicator Cluster Survey (MICS) focused
on children WHO/World Bank Model Disability Survey based on WHO
ICF, population survey to address Art 31 (impairments activity
limitations participation restrictions)
Slide 40
Model Disability Survey: Guiding Principles People with
disability have a right to participation in society on an equal
basis with others. Disability is an outcome of the interaction
between a person with a health condition and contextual factors. It
is not merely an attribute of the person. Disability is a
continuum, a matter of degree. The experience of disability is
diverse. Disability measurement should consider societal or
environmental barriers that can have a strong disabling effect, as
well as an individuals impairments and health condition. Questions
that focus on the respondents lived experience and real-life
environment will yield a better understanding of how disability
affects peoples daily lives, and what can be done to improve their
lives. Cross-national relevance and standardization of the
questionnaire are essential. A modular format allows it to be used
as a stand-alone survey or incorporated into other national
surveys.
Slide 41
Cieza et al. WHO
Slide 42
Repositoryhttp://disabilitysurvey.checkdesign.de/Cierza et al.
WHO
Slide 43
Washington Group on Disability Statistics 6 question core set
http://www.cdc.gov/ nchs/washington_gro up/wg_questions.ht m
Slide 44
WG Short Set The recommended short set of questions will
identify the majority of the population with difficulties in
functioning in basic actions; difficulties that have the potential
to limit independent living or social integration if appropriate
accommodation is not made.
Slide 45
Disability as a demographic: problems and opportunities
ProblemsOpportunities Location of disability in the individuals
capacity for functioning Linking disability to a HEALTH problem Not
sensitive to situational and temporal variability Not related to
environmental context Not indicative of the dynamic interaction
between person and environment characteristics Inconsistency in the
incorporation of assistive devices Functional areas missing (e.g.
upper limb) Mental health and intellectual disabilities not
reflected Non household population not represented Disaggregation
of census and national data sources by functional activity
variables as a proxy of disability Cost efficient inclusion in
ongoing data collection efforts Consistency over time and between
countries Data linkage with other, especially environmentally
sensitive data sources, variables and measures Monitoring of
international development programmes (e.g. Sustainable Development
Goals)
Slide 46
The need to supplement data collection of the demographic
category with measures of disabling factors (relational measures)
Ecological measures of the environment Mobility measures Temporally
and situationally/environmentally sensitive measures
Slide 47
Overall Recommendations for international comparability of
disability data, analysis and reporting Include Washington Group
short question set (6 questions) in censuses and ongoing periodic
surveys conducted or financed by national statistical offices,
government ministries and United Nations agencies and encourage its
inclusion in data collections sponsored by NGO funded agencies
disaggregate and monitor progress Improve comparability of data by
adopting a common framework and that different types of data
collection include the Washington Group short set and that survey
modules use the extended set; new methodologies such as the Model
Disability Survey (MDS) should complement and extend question
set
Slide 48
Member StatesUnited Nations Short-term National office to adopt
standardised methodologies (Wg 6) Nominate country focal point
Collaboration between UN agencies (ICF model) Mapping of data
sources across member states; quality appraisal UN Statistical
Commission to encourage UN SD to provide technical assistance
Regional offices to facilitate training Annual data briefs/reports
Open Expert Group Platform Medium-term Include short set in census;
report disaggregated data using UN standard formats Accessibility
of data reports New data tools; assess attitudes, experiences
Establish Disability Data, Method and Evidence Synthesis Working
Group Specific report by 2020 required in country reports New
standardised questions on environment and participation (UN Stat
Comm) Partnerships with donors funders and data user/producers
Immediate involvement of people with disabilities in all processes
Long-term Develop innovative data collection techniques Qualitative
information Integrated data systems in 5 year cycles Periodic UN
Global Disability Report, produced every 5 yeas by the Secretary-
General
Slide 49
Sustainable Development Goals (Post 2015)
Slide 50
Opportunity: Sustainable Development Goals (SDGs) post 2015
Goal 1End poverty in all its forms everywhere Goal 2End hunger,
achieve food security and improved nutrition and promote
sustainable agriculture Goal 3Ensure healthy lives and promote
well- being for all at all ages Goal 4Ensure inclusive and
equitable quality education and promote lifelong learning
opportunities for all Goal 5Achieve gender equality and empower all
women and girls Goal 6Ensure availability and sustainable
management of water and sanitation for all Goal 7Ensure access to
affordable, reliable, sustainable and modern energy for all Goal
8Promote sustained, inclusive and sustainable economic growth, full
and productive employment and decent work for all Goal 9Build
resilient infrastructure, promote inclusive and sustainable
industrialization and foster innovation (.) .
Slide 51
Disability and international development post-2015: Sustainable
Development Goals Recommendations from the Expert Group Meeting
Better coordination and leadership at the UN level to facilitate
global knowledge exchange; establishment of technical mechanisms to
support countries in the development, collection, analysis and
dissemination of high quality data on disability Disaggregation of
SDG data (indicators) by disability in surveys and censuses
Washington Group 6 questions Development of a broader tool set
based on ICF framework New methodologies (intersectorial attention,
e.g. disability and homelessness) Address gaps in MDG Framework
ensure regular monitoring of SDGs in relation to disability
Slide 52
Specific recommendation To include disability in the preamble
of the zero draft of the SDG Outcome document All people, of all
ages and abilities, are at the centre of sustainability
development. The indicators that track the goals should be
disaggregated to ensure no one is left behind, and targets should
only be considered achieved if they are met for all relevant income
and social groups, including disability, gender, age, and any other
social group relevant to the national context.
Slide 53
"At the age of 9, I became deaf as a result of a bout with
meningitis. In 2002, I went for Voluntary Counseling and Testing
(VCT). The results showed that I was HIV+. I become devastated and
lost hope to live because I thought that being HIV+ was the end of
world for me. Later, I met a disabled person who spiritually
encouraged me to accept my status. Now I have confidence to be able
to speak out on HIV/AIDS openly. I have been interviewed widely by
print and electronic media and I have been invited to speak in
public meetings. I am creating awareness on the importance of VCT
and encouraging people to know their status. My work is limited by
lack of money. Deaf people living in rural areas have no
information on HIV/AIDS. I would like to break the barriers by
going to visit them right where they live." Susan WHO WRD 2011
Slide 54
Access to and utilisation of health care services
Slide 55
If you have a disability what affects the risks of developing
health problems? Some issues Secondary conditions (e.g. bladder
cancer in people with SCI; respiratory complications, pressure
ulcers) Lack of screening and health risk behaviour counseling
Social and environmental access barriers to health care facilities
and diagnostic and treatment devices (e.g. scanners, dental chairs,
scales) Insufficient insurance coverage of assistive technology
Non-inclusion in health related research and exposure to research
and clinical diagnostic instruments that may not have been
validated for people with disabilities
Slide 56
Example: Accessing primary preventative services Improving
Primary Prevention for People with Chronic Disabling Conditions:
Focus Group and Internet Poll Findings from Project SHIELD
(Strategies and Health Interventions to Enhance Life with a
Disability) Kroll T, Jones GC, Kehn ME & Neri MT (2006)
Slide 57
Primary preventive services based on U.S. Preventive Services
Task Force Recommendations General Screenings Physical Exam (every
1 to 2 years) Blood pressure check Cholesterol check Blood stool
test (age 40 and older) Height and weight measured Bone mineral
density screening Gender-Based Screenings Pap smear (all sexually
active women or women 18 and older) Breast exam (women 18 and
older) Mammogram (women 30 and older; frequency depends on age and
history) Dr. discuss prevention of bone loss Prostate exam (men 50
and older) Immunizations Flu shot (annually) Pneumonia shot (once
in lifetime) Tetanus shot (every 10 years) Health Behavior
Assessment Dr. asked about diet and eating habits Dr. asked about
physical activity Dr. asked about smoking Dr. asked about alcohol
consumption Dr. asked about birth control Dr. asked about drug use
Dr. asked about sexually transmitted diseases
Slide 58
Health risks: NHIS 2002 Limited refers to adults between 18 and
85 years who identified themselves as limited in activities as a
result of at least one chronic condition; weighted data
Slide 59
Research objectives Determine the experiences with primary
preventive health care services among people with physical
disabilities Develop an in-depth understanding of barriers and
consumer-defined solutions to improve access to and use of primary
preventive services Develop resource material to address primary
preventive care needs
Slide 60
Experiences I felt doctor disregarded normal health concerns as
not only secondary to my obvious disability, but unimportant to
address entirely Avoid GYN care for years needing help to get onto
GYN table for exam I have no insurance and the clinic is so busy
and it takes a long time to see a doctor The mammogram machine
wouldnt work with my wheelchair (couldnt position it) I dont get
preventative GYN exams because I cannot find a doctor who does
these exams and takes Medicaid who also has an accessible exam
table Internet poll, 2006, US. Kroll et al.
Slide 61
Barriers to receiving primary preventive services Health
professional and environmental barriers Inaccessibility of
facilities and equipment Lack of disability-specific provider
knowledge and training Inappropriate professional behavior,
courtesy and manner Insufficient provider-patient communication
Visit/Appointment time constraints Insufficient and inexperienced
provider office staff and support Service user Lack of knowledge
about primary preventive services Insufficient insurance coverage
No primary care provider Lack of preventive care seeking motivation
General frustration with lack of coordination and responsiveness of
health care system
Slide 62
Example: Professional Behaviour No direct communication with
Person with disability (PWD) Lack of respect and courtesy
Insufficient explanations of procedures Health professional does
not listen to what the PWD has to say Inability to look beyond
disability PWD perceived as being too complex or difficult
Slide 63
Strategies to Minimize Barriers Health professional Improve
facility, equipment, and procedural accessibility Improve
disability competent staffing at provider office Improve
information, communication and service integration among general
and specialist providers Improve scheduling system for preventive
services (e.g. reminders) Continuing education programs to focus on
disability-specific experiences Communication skills and attitude
correction Service user Preparation and planning before and after
the appointment Self-education Assertiveness and direct
communication with providers Careful selection of suitable
providers PWD has responsibility to educate providers on how to
best deliver services Record keeping and medical event timeline;
request records from providers Calendar to plan annual
check-ups
Slide 64
Example: Complex marginalisation Health and housing of low
income adults with disabilities Aim: To understand the impact of
the living environment on the health and access to health care of
low-income working-age adults with physical disabilities
Design/method: Mixed method study; focus groups (n=28) and survey
(84 homeless individuals in 12 shelters in Washington DC) Service
user involvement: Consultation group, community partner (housing),
paid trained interviewers with disabilities Key findings: 40% (Ho
& Kehn, 2007) respondents perceived their health as
deteriorating due to substandard, inaccessible living conditions
(poor sanitation, crowdedness, inaccessible facilities, lack of
medical and instrumental support; safety/privacy concerns); delayed
care (prescriptions; assistive equipment); limited coverage, lack
of transportation, lack of knowledge of available services
Publications: Ho P-S, Kroll T, Kehn M & Pearson K (2007).
Health and Housing among Low-Income Adults with Disabilities.
Journal of Healthcare for the Poor and Underserved 18,
902-915.
Slide 65
Before I came here, I had to stay in bed for like three months
because I was waiting for my wheelchair to come to my place. Id
call my doctor and theyd say it was coming. I had to go up there
face-to-face to get something done. Then they told me they lost my
paperwork and I had to start all over again. I just stayed in my
apartment until the rent got too high and I could not afford it and
I got put out. Thats when I became homeless I had a nurse refusing
to come in here because of the conditions of the place. She refused
to come on the floor because it was not sanitary enough for her to
come in here [frequent infections; pressure ulcers]
Slide 66
Health-related research and measurement
Slide 67
Exclusion in two principal ways As essential agents: Agenda
setting, project planning, delivery, interpretation and
dissemination As essential beneficiaries: Study designs, settings,
methodologies dont allow for participation
Slide 68
Who is excluded? People with Physical (Mobility Impairment):
Example: Cannot write answer Sensory (Vision, Hearing, Speech):
Example: Cannot read question Cognitive (Attention, Memory,
Concentration, Learning): Example: Cannot remember question; Cannot
understand question Psychiatric (Depression, Psychosis): Example:
Does not trust interviewer disabilities People from Socially
marginalized groups (e.g. income, education, living conditions)
Example: Homeless adult with diabetes-related disability and
limited formal education lives in shelter 2 out of 7 nights Ethnic
and linguistic minorities (e.g. Spanish speaking adults with
cognitive or speech impairments) Multiple social disadvantage
Slide 69
Example: Patient-reported outcome measure (PROMS): Can people
with learning disabilities participate? Thilo Kroll, Deepa
Jahagirdar, Sally Wyke and Karen Ritchie, Health Expectations
(2012)
Slide 70
What we did: Our method We decided to look at one common
respiratory condition: chronic obstructive pulmonary disease or
COPD We looked at literature reviews that described Questionnaires
(PROMs) for COPD Fitzpatrick et al [13] and Davies et al [14] Some
or specific to respiratory disease, others general SF36, SGRQ, CRQ
and EQ5D We wanted to know if people with learning disabilities had
been included in the development
Slide 71
What we found Two forms of exclusion People with learning
disabilities and people who cannot read well are excluded
intentionally (explicit) Dont want them in the study People with
learning disabilities and people who cannot read well have been
excluded by omission (implicit) Have not thought about including
them
Slide 72
Two principal consequences of exclusion personal: health and
safety risks (research findings, interventions based on biased
assumptions) societal level: flawed statistical basis for decision-
making, quality improvement and resource allocation
Slide 73
Spectrum of inclusion/exclusion Invisible Multiple
modifications to standard research practice needed Simple
modifications to standard research practice needed No Modifications
needed Kroll, 2007
Slide 74
Health and wellbeing promotion
Slide 75
Example: Inclusive health promotion for people with
disabilities Peer mentoring and the prevention of secondary
conditions after SCI Aim: To develop, implement and
feasibility-test a peer mentoring program for people with SCI
Design/method: Qualitative, developmental feasibility study;
uncontrolled pre-post design 6 months with 6 mos follow-up; peer
contact with trained peer mentors by phone or in person; explain,
monitor demonstrate, refer; regular supervision Service user
involvement: Community partner as subcontractor (peer training,
implementation); SCI Educator (person with SCI); peer mentors
included in development Key findings: Significant reduction of
respiratory complications; ER visits over time; high acceptance;
SCI knowledge enhanced (exit interview); after grant funding ceased
incorporated into hospital service; integration with inpatient
education Publications: Kroll T, Gilmore B, Neri MT, Gordon SA
& Towle S (2005). Peer Mentoring in the Prevention of Secondary
Conditions in People with Newly Acquired Spinal Cord Injury:
Preliminary Findings. Journal of Spinal Cord Medicine, 28(2), 133.
Neri MT, Kroll T & Groah S (2005). Towards Consumer-Defined
Exercise Programs for People with Spinal Cord Injury: Focus Group
Findings. Journal of Spinal Cord Medicine, 28(2), 132.
Slide 76
Program was good psychologically because you share concerns and
successes, and get good advice (Male, age 59, C6 incomplete
injury). I gained good SCI knowledge I would not have gained
without the program (Male, age 32, C4 complete injury). Ljungberg,
Kroll, Libin, Gordon (2011)
Slide 77
Thank you! General References WHO and World Bank (2011). World
Report on Disability. Geneva: WHO. Lollar DJ & Andresen EM
(2011). Public Health Perspectives on Disability: Epidemiology to
Ethics and Beyond. New York: Springer. Institute of Medicine
(2007). The Future of Disability in America. Washington, DC: The
National Academies Press. OHara J, McCarthy J, Bouras N (eds)
(2010). Intellectual Disability and Ill Health. Cambridge:
Cambridge University Press. Kroll T, Keer D, Placek P, Cyril J,
Hendershot G (eds) (2007). Towards Best Practices for Surveying
People with Disabilities: Hauppage, NY, NovaScience Publishers.
Peterson DB (2011). Psychological Aspects of Functioning,
Disability and Health. NY: Springer. Shakespeare T (2006)
Disability Rights and Wrongs. Cambridge : Polity Press.
Slide 78
Selected references related to the research presented Kroll T,
Jahagirdar D, Wyke S, Ritchie K (2012). If Patient Reported Outcome
Measures (PROMS) are considered key Health Care Quality Indicators,
who is excluded from participation? Health Expectations. DOI:
10.1111/j.1369-7625.2012.00772.x. Ljungberg I, Kroll T, Libin A,
Gordon S, Groah S & Neri M (2011). Using peer mentoring with
people with spinal cord injury to enhance self-efficacy beliefs and
prevent medical complications. Journal of Clinical Nursing,
20(3-4), 351358. Ho P-S, Kroll T, Kehn M & Pearson K (2007).
Health and Housing among Low-income Adults with Disabilities.
Journal of Healthcare for the Poor and Underserved, 18, 902-915.
Kroll T; Kehn M; Ho P-S; Groah, S. (2007). Short communication: The
SCI Exercise Self- Efficacy Scale (ESES): Development and
Psychometric Properties. BMC International Journal of Behavioral
Nutrition and Physical Activity, 34(4),
http://www.ijbnpa.org/content/4/1/34.http://www.ijbnpa.org/content/4/1/34
Kroll T, Gilmore B, Neri MT, Gordon SA & Towle S (2005). Peer
Mentoring in the Prevention of Secondary Conditions in People with
Newly Acquired Spinal Cord Injury: Preliminary Findings. Journal of
Spinal Cord Medicine, 28(2), 133. Kroll T, Jones GC, Kehn ME &
Neri MT (2006). Barriers and Strategies Affecting the Utilization
of Primary Preventive Services for People with Physical
Disabilities: A Qualitative Inquiry. Health & Social Care in
the Community, 14(4), 284-293.