Concept: Disability - Data Sources for Measuring Prevalence

Introduction

This concept identifies and discusses possible data sources for identifying individuals with disabilities. This includes a look at survey information from Statistics Canada and from a variety of databases available in the Manitoba Population Research Data Repository. The concept describes the data sources and suggests some variables within the datasets that might be useful when investigating and measuring the prevalence of disability in children or adults in Manitoba.

NOTE: This information has not been used in research at the Manitoba Centre for Health Policy (MCHP) and has not been validated (except for Special Needs Funding and MDS - Home Care and Long Term Care (LTC) data, used by Brownell et al. (2008) and Doupe et al. (2011) , respectively). Much of the information provided in this concept has been derived from a document prepared by Mark Smith ( "Disability in Manitoba and Associated Health Care Costs and Utilization" ) and from information in our internal Metadata Repository.

Survey Data from Statistics Canada

There are two possible sources of survey data related to disability from Statistics Canada:


1. Participation and Activity Limitation Survey (PALS); and
   
2. Canadian Survey on Disability (CSD).

NOTE: Survey data may not be linkable to additional data sources within the MCHP Data Repository. Record linkage capabilities would need to be investigated and if possible, specific approvals need to be obtained before linkage can occur.

1. Participation and Activity Limitation Survey (PALS)

The Participation and Activity Limitation Survey (PALS) was conducted by Statistics Canada on a sample of Canadian individuals who self-reported an activity limitation in the 2001 Census. This survey provided information about adults and children with disabilities in Canada. Individuals were excluded if they were living in the territories, on First Nations reserves or in institutions (Statistics Canada, 2002).

PALS defined disability as "an activity limitation or participation restriction associated with a physical or mental condition or health problem" (Statistics Canada, 2006, p.8). This definition was based on the classification by the International Classification of Functioning, Disability and Health (ICF) from the World Health Organization (WHO) (Statistics Canada, 2006).

"This framework defines disability as the relationship between body structures and functions, daily activities and social participation, while recognizing the role of environmental factors. The ICF is a multi-dimensional classification, encompassing both a medical and a social model of disability. The ICF is intended to have a number of applications as a statistical tool, a research tool, a clinical tool, a social policy tool, and as an educational tool." (Statistics Canada, 2006, p.8)

Please see the WHO - International Classification of Functioning, Disability and Health for more information.

As of 2001, PALS reported that Canada has a disability rate of 12.4% (equal to approximately 3.6 million Canadians with disabilities). This rate appears to increase with age; adults over 75 years of age have a disability rate over 50%, compared with approximately 40%, 10% and 3% in adults over 65 years old, 15-64 years and children (0-14 years), respectively (Statistics Canada, 2002).

PALS uses different criteria to identify disabilities in children (0-14 years old) and adults (15+ years old). In "A Profile of Disability in Canada, 2001" (available on-line at: http://www.statcan.gc.ca/pub/89-577-x/pdf/4228016-eng.pdf Statistics Canada (2002) differentiates the disability types identified by the PALS for children and adults.

For more information on PALS, please visit the Statistics Canada web site at: http://www5.statcan.gc.ca/bsolc/olc-cel/olc-cel?catno=89-628-x&lang=eng . Tables summarizing the PALS survey data are also available on the Statistics Canada website at: http://www.statcan.gc.ca/pub/89-628-x/89-628-x2010015-eng.htm .

2. Canadian Survey on Disability (CSD)

A more recent survey conducted by Statistics Canada is the Canadian Survey on Disability (CSD). "The purpose of the Canadian Survey on Disability (CSD) is to provide information about Canadians whose everyday activities may be limited because of a condition or health-related problem." (Statistics Canada Website: Canadian Survey on Disability - accessed May 29, 2013). Data from the CSD is scheduled for release in 2013.

"The target population covered by the CSD includes all adults aged 15 and up (as of Census day [2011]) who answered "yes" to either of the activity limitation questions on the National Household Survey (NHS, record number 5178), and who were living in Canada at the time of the survey. This includes persons living in private dwellings in the ten provinces and three territories. The population living on First Nations reserves is excluded, as are people living in collective dwellings." (Statistics Canada Website: Canadian Survey on Disability - accessed May 29, 2013).

For more complete information on the CSD, please visit the Statistics Canada Website: Canadian Survey on Disability (CSD) , available at: http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3251&lang=en&db=imdb&adm=8&dis=2 .

Data Sources from the Manitoba Population Research Data Repository

The Manitoba Population Research Data Repository houses multiple databases from Manitoba Health (MH), Winnipeg Regional Health Authority (WRHA), Manitoba Education, and Manitoba Family Services and Housing (MFSH) that may contain information on Manitobans with disabilities. This section contains a brief description of the information within various databases that might be related to disability, and how disabilities might be identified in each of the datasets.

NOTE: The following information has not been used in research at MCHP and has not been validated.

The discussion is arranged by the type of data sources that may identify:

A. Children and Adults with Disabilities,
B. Children with Disabilities, and
C. Adults with Disabilities.

A. Children and Adults with Disabilities

The following data source(s) could be used to identify children and adults with disabilities.

1. Hospital Discharge Abstracts and Medical Services Databases

International Classification of Diseases (ICD) codes may be used in hospital discharge abstract and medical services/physician claims data to identify individuals with disabilities. ICD codes may vary depending on the types of disability being studied and the purpose of the study. The ICD-10- codes listed in Chapter V (Mental and Behaviour Disorders) and Chapter XXI (Factors Influencing Health Status and Contact with Health Services), among other chapters, may contain ICD codes relevant to disabilities. Please see the WHO - ICD-10 Version 2007 for a list of all ICD-10 codes.

The following table lists possible ICD codes that may identify the existence of a disability:



ICD-10 (ICD-9-CM) Code	Title
F34	Persistent mood [affective] disorders
F43.2	Adjustment disorders
F68.0	Elaboration of physical symptoms for psychological reasons
F80 (315)	Specific developmental disorders of speech and language
F81.1	Specific spelling disorders
F81.9	Developmental disorder of scholastic skills, unspecified
H53 (368ish)	Visual disturbances
H54 (369)	Blindness and low vision
Q16 (744)	Congenital malformations of ear causing impairment of hearing
R26 (7812, 71970)	Abnormalities of gait and mobility
R47 (7845ish)	Speech disturbances, not elsewhere classified
R48 (7846)	Dyslexia and other symbolic dysfunctions, not elsewhere classified
R49 (78449)	Voice disturbances
Y85-Y89	Sequelae of external causes of morbidity and mortality
Y89.1	Sequelae of war operations
Y89.9	Sequelae of unspecified external cause
Z45.3 (V532)	Adjustment and management of implanted hearing device
Z46.1 (V532)	Fitting and adjustment of hearing aid
Z50.5 (V573)	Speech therapy
Z73.6	Limitation of activities due to disability
Z74.0 (V608)	Reduced mobility
Z82.8	Family history of other disabilities and chronic diseases leading to disablement, not elsewhere classified
Z96.2 (V4389ish)	Presence of otological and audiological implants
Z97.4 (V498ish)	Presence of external hearing-aid

Reference: World Health Organization; email from Charles Burchill, July 25, 2008

NOTES:

• The ICD-9-CM codes listed in the table above that end with "ish" should be checked as some are not a clear match.
  
• Over time, the majority of ICD-9-CM codes captured in the Medical Services / Physician Claims data are only 3-digits. In December 2018, a 5-digit diagnosis code variable was added to the Medical Services data. If recorded, the first 3-digits of both the 3-digit and 5-digit diagnosis code variables will match exactly. The 5-digit diagnosis code variable applies to records from 2015/16 forward.
  
• This is only a sample of possible ICD-10 codes related to disabilities - a more comprehensive review of all ICD codes is needed prior to the use of hospital and physician data to identify children and adults with disabilities. Please confirm with clinician or actual coder.
  
• The International Classification of Functioning, Disability and Health (ICF) is another system used to classify disability in individuals. The WHO provides an ICF Browser which gives more information on these codes.

2. Children's disABILITY Services (CDS) / Community Living disABILITY Services (CLDS) Data

The CDS / CLDS data provides information on the services and supports provided by the Department of Families for children and adults with disabilities. This data source contains information about the type(s) of disabilities for each of the participants.

In the CDS, eligible children under the age of 18 must have a medical diagnosis confirming one or more of the following conditions: intellectual disability, developmental delay, autism spectrum disorder (ASD), a life-long physical disability, or a high probability of developmental delay. The available services and supports include: respite; therapy (OT, PT, speech and language, and audiology); child development services for preschool children; autism services (outreach and applied behavioral analysis); behavioral services; summer skills programming; after-school care for adolescents; supplies, equipment, and home/vehicle modifications; transportation to related services; and other resources ( Manitoba Families - Children's disABILITY Services website - April 2021 ).

In the CLDS, eligible Manitoba adults (18 years and older) must have significantly impaired intellectual functioning with impaired adaptive behaviour. CLDS offers a wide range of services and supports, including: supports to people living at home with family (e.g. respite, in-home services, support to families, outreach, and school in-service and summer programming); day services (help with employment placement, job training, or other day services); residential services (living at home with family, supported independent living, home share, or shift-staffed homes (group homes)); clinical services (assessment and therapy); and crisis intervention (counselling and other supports). CLDS is a voluntary program and some eligible people choose not to receive services from the program. ( Manitoba Families - Community Living disABILITY Services website - April 2021 ).

B. Children with Disabilities

The following data source(s) could be used to identify children with disabilities.

1. Education - Enrollment, Marks, and Assessments

The education data contains two variables, CATEGORYN and STATUSN , specifying students with special needs who receive Special Needs Categorical Funding (Levels II and III) from Manitoba Education.

CATEGORYN indicates the type of special need for each student through the following responses:


• EBD = Emotional Behaviour Disorder
  
• HOH = Hard Of Hearing
  
• MH = Multiple Handicaps
  
• OTH = Other Special Needs
  
• PSY = Psychotic
  
• VI = Visually Impaired

Students with any of the above responses may be considered to have a disability.

STATUSN indicates whether the Special Needs Categorical Funding has been approved, denied, federally funded or terminated for each student.

Brownell et al. (2008) determined the prevalence of children with disabilities by using these variables to measure the prevalence of children (aged 6 to 17 years) receiving Special Needs Level II or III funding. Children with disabilities were defined as "children whose daily activities or normal functioning are restricted because of a condition or health problem...These are children with at least one diagnosis of a sensory or mental handicap or an emotional or behavioural disorder" (Brownell et al., 2008, p.310).

The Intellectual Disability (Mental Retardation)/Developmental Disability concept has more information regarding how MCHP has defined these disabilities in previous research using the education data.

2. Child and Family Services Information System (CFSIS) - Children in Care

Child and Family Services Application (CFSA) tables contain variables that may indicate the existence of a disability in an individual under care of Child and Family Services. The following are select variables that may assist in measuring disabilities in children.


• LearningDisability variable indicates disabilities such as:
  
  
  • dyslexia
    
  • reading difficulties
    
  • speech language
    
  • ADD/ADHD
    
  • learning disability (diagnosed), and
    
  • learning disability (suspected)
    
    NOTE: This variable is found in table 12 and has the SAS format: $cfsa12learndisab.
  
  
• IsPersonDisabled variable indicates the existence of any disability
  
  
  • Y/N responses
    
    NOTE: This variables is found in table 17 and has the SAS format: Boolean.
  
  
• PhysicalDisability variable indicates the existence of the following physical disabilities:
  
  
  • cerebral palsy
    
  • cleft palate
    
  • club foot
    
  • general
    
  • hypotonia
    
  • motor delay, or
    
  • scoliosis
    
    NOTE: This variable is found in table 21 and has the SAS format: $cfsa21physdisab.

CFSA tables a20-a33 also contain information on sensory perception, developmental delay, cognitive intellectual, diagnosed/suspected mental health, the origin or cause of disability, etcetera. However, it should be noted that the data from these tables may not be complete as they have not been consistently filled out by social workers (Personal Communication by email with Marni Brownell of MCHP, July 6, 2011).

In order to identify an individual case within these tables, a link must be established between CFSA tables.

3. Manitoba Family Services and Consumer Affairs - Child Day Care

The Child Day Care Program Database contains one limited disability indicator: DISABLD_SW, that indicates the existence of a disability:


• Y/N (1/0) responses
  
  NOTE: Approximately 96% of children in this database will have a value of "0" for this variable, therefore, it may not be especially useful alone to identify children with disabilities.

4. Manitoba Fetal Alcohol Spectrum Disorder (FASD) Data

The Fetal Alcohol Spectrum Disorder (FASD) Data (formerly known as Clinic for Alcohol and Drug Exposed Children (CADEC)) contains information on children with known prenatal alcohol exposure. It may contain information on children who have disabilities concurrently with FASD. There are several variables which may indicate the existence of disabilities. The following are select variables from the Manitoba FASD Data Dictionary that might be useful when investigating children with disabilities:


• Behavioural or occupational therapy concerns:
  
  
  • BEH_x
    
    
    • BEH_ATTENT = attention problems
    • BEH_Autistic_Behavior = autistic behaviour
    • BEH_FEED = feeding disorders
    • BEH_HYPER = over-activity
  
  
• Communication concerns:
  
  
  • COM_x
    
    
    • COM_Hearing = hearing disorders
    • COM_Speech = speech disorders
    • COM_other = other communication disorders

Please see Manitoba Fetal Alcohol Spectrum Disorder (FASD) Data glossary term or the Manitoba Fetal Alcohol Spectrum Disorder Data Dictionary for more information.

C. Adults with Disabilities

The following data source(s) could be used to identify adults with disabilities.

1. Employment and Income Assistance (EIA) Data

There are multiple variables in the EIA data indicating mental, physical and other disabilities. These disability flags are associated with an individual's eligibility for employment and income assistance (EIA), and include the following:


• DisabltyMHInd = mental health disability indicator;
  
• DisabltyMRInd = mental retardation indicator;
  
• DisabltyOthInd = other disability indicator;
  
• DisabltyPDCd = physical disability code with the following values:
  
  
  • HE = HEARING
    
  • IL = ILLNESS
    
  • MCNW = MOBILITY/COORD-NO WHLCHR
    
  • MCW = MOBILITY/COORD-WHLCHR
    
  • OT = OTHER
    
  • SP = SPEECH
    
  • VI = VISION
  
  NOTE: If an individual is receiving income from the Canada Pension Plan (CCP) or Worker's Compensation, they would not receive EIA and therefore would not appear in this database.

2. Manitoba Housing

The Manitoba Shelter Benefit (for Persons with a Disability) Program provides momentary assistance for individuals who rent their living area privately. To be eligible, the individuals must:


• have a physical, mental or psychiatric disability;
  
• be less than 55 years of age;
  
• make less than $21,168 per annum; and
  
• must spend at least 25% of household income on rent. (Manitoba Family Services and Consumer Affairs)

Individuals who rent from other housing benefit programs or the Manitoba Housing Authority and those that live on a First Nations reserve are not eligible.

Disability is defined by the Manitoba Shelter Benefit program as "a physical, mental, or psychiatric condition that (a) is expected to last one year or more, and is continuous or is cyclical and is likely to recur; and (b) substantially restricts or interferes with a person's ability to (i) attend to his or her personal care, or (ii) function in the home, community or workplace" (Personal Communication by email with Cristina Cabral of the Manitoba Government, June 27, 2011).

The Manitoba Shelter Benefit Program information is available to data analysts at MCHP from Manitoba Family Services and Consumer Affairs.

3. Canadian Community Health Survey (CCHS)

It is predicted that the definition of disability in the CCHS is very similar to that in the PALS. Weights must be used if this data is to be compared with other resources because it is not a population-wide resource. It does not include individuals living on First Nation reserves and therefore may not be representative of Manitoba. For projects conducted on behalf of Manitoba Health, the CCHS can be linked at the individual level and could be used to identify individuals with a disability.

Cycle 1.2 of the CCHS contains information on mental health in Canada and examines disabilities related to mental health (Statistics Canada, 2011).

Please see the Canadian Community Health Survey (CCHS) , the CCHS Data Dictionary ( internal access only ) or a description of the CCHS provided by Statistics Canada for more information.

4. Minimum Data Set (MDS) - Home Care & Long Term Care Databases

These databases contain potential records for Winnipeg only.

Doupe et al. (2011) analyzed the needs of home care and personal care home clients based on their health and ability to function through the Resident Assessment Instrument - Home Care (RAI-HC©) and the Resident Assessment Instrument - Minimum Data Set 2.0 (RAI-MDS 2.0©), respectively. Disability was not directly identified; however the level of care required by clients for activities of daily living was measured which may or may not be related to the existence of disabilities.

Please see Table 6.2: An Overview of the Outcome Scales and Individual Measures used from RAI-HC© (home care) and RAI-MDS 2.0© (personal care homes) to Conduct this Research from Population Aging and the Continuum of Older Adult Care in Manitoba by Doupe et al. (2011) for a description of the activities of daily living that were analyzed.

Importance of Record Linkage

The scope of disability is wide and the individual databases listed above will not capture all types of disabilities in all individuals. When examining disabilities using MCHP data, it is important to link various datasets together in order to create a more complete picture of the rate of disability in children and/or adults in Manitoba. Without record linkage, findings may be distorted and/or inaccurate.

Limitations / Cautions

• Most of this data has not been used in disability-related research at MCHP. The information provided in this concept should be verified and validated prior to use.
  
• All types of disabilities, in all persons, will not be captured by the exclusive use of a single database.
  
• Many databases contain only a specific population of individuals (e.g.: children under care of Child and Family Services, individuals receiving EIA, individuals in Long Term Care, or individuals receiving Home Care services), who may or may not have a disability.