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December 31, 2013

Some useful information, please!

Last time we learned the puzzling news from Statistics Canada that Nova Scotians are about twice as likely to have a "disability" as Quebeckers.

This bulletin from the agency so reviled by the Harper government makes me want to know more.

"The Canadian Survey on Disability (CSD) collects information about adults whose everyday activities are limited due to a condition or health-related problem." is the lead sentence in the survey.  This alone is enough to send me into orbit.  The emphasis is on you and your problems, rather than the gratuitous barriers you waste so much time overcoming.  

The introduction goes on to say that the CSD is different from previous surveys because it "uses the World Health Organization’s International Classification of Functioning, Disability and Health framework of disability. This framework defines disability as the relationship between body function and structure, daily activities and social participation, while recognizing the role of environmental factors."  If you have the patience to read the WHO document, you will find a few nuggets of truth among the misspellings.

It describes the Social Model of Disability in some detail: disability demands a political response, since the problem is created by an unaccommodating physical environment brought about by attitudes and other features of the social environment.  And the WHO acknowledges the complex and evolving interaction between health, the individual and the environment.

But the CSD seems preoccupied with the medical aspects of "disability".  You might think the questions are designed to evoke a clinical classification of the 11 types of disability and 4 levels of severity.  Once Statistics Canada has decided which of the 44 boxes you belong in, the work is done, thank you very much.

For all the lip service to "environmental factors" the word "barrier" appears only twice in the 350 questions of the survey.  There is hardly a disability without its corresponding barrier.  A step, the lack of a Braille menu, conventional expectations, stupid rules, timed tests - these are barriers.  Take them away and a person we so glibly call "disabled" simply isn't.

That's the basic problem with the survey.  So when Statistics Canada says "The data will be used to plan and evaluate services, programs and policies." people facing barriers need to be wary.  

Here's a bit about the survey.  
  • It's automated and conducted mostly by telephone
  • Its a sample survey - candidates are selected from the National Household Survey (itself a sample) based on their answer to questions related to limitations
  • The total sample size for the CSD was 45,443 individuals
  • Perversely, people in institutions (Statistics Canada call them "collective dwellings") were excluded
  • With some caveats, the overall response rate was 74.6%
  • Is there a Braille version of the report?  Of course not!
  • Questions were of the following types:
Type of QuestionPercent of questions
Disability screening12%
Main cause3%
Aids and Assistive devices29%
Care giving8%
Past education4%
Educational Experience 5%
Educational background 1%
Labor force status2%
Employment details 6%
Unemployed people 4%
Not in labour force6%
Retirement 2%
Workplace training 2%
Employment modifications4%
Labour Force Discrimination1%
Getting Around the Community 2%
Source of Income 4%

So no questions about assets, housing, government services, income amount, recreation, infrastructure, to name a few.  2% on "getting around the community", which includes transportation.  Ridiculous.

Now it gets serious.  In Nova Scotia, we're embarking on legislation to eliminate barriers.  We need to know what they are, how they work, how to make them go away.  Barriers arise in all aspects of life.   To be sure, we need to know something about individual circumstances, but the elimination of barriers doesn't require the answer to questions like this:
Do you have any emotional, psychological or mental health conditions?  These may include anxiety, depression, bipolar disorder, substance abuse, anorexia, as well as other conditions.
    or this:

    Do you think you have a condition that makes it difficult in general for you to learn? This may include learning disabilities such as dyslexia, hyperactivity, attention problems, as well as other conditions. 

    I need to say it again.  The problem is barriers, not the people who encounter them.  Buried in the Canadian Survey on Disability are about 20 questions that might inform the process of eliminating barriers.  Not perfect, but helpful.  So please, Statistics Canada, what do Nova Scotians say about the following:
    Why do you not have assistive devices? (Applies to various "disabilities")
    1. Cost (too expensive to purchase)
    2. Not covered by insurance
    3. Not able or willing to upgrade from current aid/device
    4. Don’t know how/where to get aid/device
    5. Not available locally
    6. On a waiting list
    7. Available aids cannot be adapted for respondent’s situation
    8. No reason stated
    How much did you have to pay out-of-pocket in the past 12 months for aids, devices and specialized equipment?
    1. Less than $100
    2. $100 to less than $200
    3. $200 to less than $500
    4. $500 to less than $1,000
    5. $1,000 to less than $2,000
    6. $2,000 to less than $5,000
    7. $5,000 or more
    In the past 12 months, were you ever unable to get prescription medications you were supposed to take because of the cost?
    1. Yes
    2. No
    How much did you have to pay out-of-pocket in the past 12 months for the help you received? Please exclude amounts for which you have been or will be reimbursed
    1. Less than $500
    2. $500 to less than $1,000
    3. $1,000 to less than $2,000
    4. $2,000 to less than $5,000
    5. $5,000 to less than $7,500
    6. $7,500 to less than $10,000
    7. $10,000 or more
    Because of your condition, [do/did] you require adapted or modified building features to attend school?
    1. Yes
    2. No
    [Do/Did] you require... ?
    1. accessible classrooms
    2. adapted washrooms
    3. accessible residences
    4. accessible buildings, excluding residences
    5. other feature
    6. none of the above
    [Do/Did] you need...?
    1. recording equipment or a portable note-taking device
    2. a computer or laptop with specialized software or other adaptations to help with your condition
    3. a device for playing audio books or e-books
    4. magnifiers
    5. CCTV’s (Closed circuit television readers)
    6. large print reading materials
    7. Braille reading materials or manual brailler
    8. a cell phone or smart phone with specialized features to help with your condition
    9. a teacher’s aide or tutor
    10. a sign language interpreter
    11. attendant care services
    12. a modified or adapted course curriculum
    13. extended time to take tests and exams
    14. other aid or service
    15. none of the above
    What is the highest certificate, diploma or degree that you have completed?
    1. Less than high school diploma or its equivalent
    2. High school diploma or a high school equivalency certificate
    3. Trade certificate or diploma
    4. College, CEGEP or other non-university certificate or diploma (other than trades certificates or diplomas)
    5. University certificate or diploma below the bachelor's level
    6. Bachelor's degree (e.g. B.A.B.Sc.LL.B.)
    7. University certificate, diploma or degree above the bachelor's level
    What is the main reason you usually work less than 30 hours per week?
    1. Temporary illness
    2. Disability or health condition
    3. Caring for own children
    4. Caring for a (adult) family member
    5. Other personal or family responsibilities
    6. Going to school
    7. Economic conditions
    8. Could not find work with 30 or more hours per week
    9. Job is part-time/ contract, more hours not available
    10. Don’t want to work more than 30 hours
    11. Other
    Do you believe that your condition makes it difficult for you to change jobs or to advance at your present job?
    1. Yes, very difficult
    2. Yes, difficult
    3. No, not difficult
    Why do you believe that your condition makes it difficult for you to change jobs or advance at your present job?
    1. Discrimination or stigma because of condition
    2. Condition limits number of hours that can be worked
    3. Condition limits ability to search for a job
    4. Cannot obtain required supports or accommodations
    5. Adapting to a new work environment would be difficult
    6. Other
    7. None selected
    Some people have encountered barriers which have discouraged them from looking for work. Please think about your own experience and indicate which of the following situations apply to you.
    1. Your expected employment income would be less than your current income
    2. You would lose additional supports such as drug plan or housing
    3. Lack of specialized transportation
    4. Your family responsibilities prevent you from working
    5. Your past attempts to find work have been unsuccessful
    6. Your family or friends discourage you from working
    7. You have experienced discrimination in the past
    8. You feel your training or experience is not adequate for the current job market
    9. There are few jobs available in your local area
    10. You experienced accessibility issues when applying for work
    11. Other reason
    12. None selected
    Did any of the following prevent you from taking work-related training courses?
    1. Location was not physically accessible to you
    2. Courses were not adapted to the needs of your condition
    3. You requested courses, but were denied them (by employer)
    4. Your condition
    5. Inadequate transportation
    6. Too costly
    7. Too busy
    8. Other reason
    9. None selected
    Because of your condition, do you require any of the following to be able to work?
    1. Job redesign (modified or different duties)
    2. Telework
    3. Modified hours or days or reduced work hours
    4. Human support, such as a reader, Sign language interpreter, jobcoach or personal assistant
    5. Technical aids, such as a voice synthesizer, a TTY, an infrared system or portable note-taker
    6. A computer or laptop with specialized software or other adaptations such as Braille, screen magnification software, voice recognition software or a scanner
    7. Communication aids, such as Braille or large print reading material or recording equipment
    8. A modified or ergonomic workstation
    9. A special chair/ back support
    10. Handrails, ramps or widened doorways or hallways
    11. Adapted or accessible parking
    12. An accessible elevator
    13. Adapted washrooms
    14. Specialized transportation
    15. Other equipment, help or work arrangement
    16. None of the above
    In the past five years, do you believe that because of your condition, you have been: refused a job interview / job / promotion?
    1. Yes
    2. No
    What are the reasons you have difficulty using public transit or specialized transit service?
    1. Service is not available when you need it
    2. Booking rules don’t allow for last minute arrangements
    3. Difficulty getting to or locating bus stops
    4. Difficulty getting on or off the vehicle
    5. Difficulty seeing signs or notices, stops or hearing announcements
    6. Overcrowding
    7. Difficulty requesting service
    8. Difficulty interpreting schedules
    9. Difficulty transferring or completing complicated transfers
    10. Your condition or health problem is aggravated when you go out
    11. Too expensive
    12. Other reason
    In 2011, did you receive income from the following sources: Wages and salaries?  Income from self-employment? / Workers’ Compensation? / Canada Pension Plan Disability Benefit? / Quebec Pension Plan Disability Benefit? / Benefits from Canada Pension Plan excluding disability benefits? / Benefits from Quebec Pension Plan excluding disability benefits? / Long Term Disability (private plan)? / Motor Vehicle Accident Insurance Disability Benefit? / Veterans Affairs disability pension benefit? / Provincial, Territorial or Municipal Social Assistance or Welfare? / Employment insurance (or Quebec Parental Insurance Plan)?
      So that's your assignment, Statistics Canada.  You, too, could be useful.

      Gus Reed

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