Person with Disability Data Standard

Intended Audience and Contact Information

Contact	Chief Data Officer, Office of the CIO
Intended audience	Internal UBC
UDM Domain	Demographic Domain
Data Standard ID	DG00XX

Change Log

Standard Version Date	Change Log

Purpose

This standard aims to achieve consistency around the data collected for a Person with Disability, and the format in which it is collected and stored in across the University.

A Person with Disability, also known as a Person Living with a Disability, Disabled Person or Person with Chronic Health Condition, is a person who is experiencing long-term* persistent or recurring physical, mental, sensory, or learning disability, including chronic health conditions, which may result in a person experiencing disadvantage or encountering barriers to full participation in University life.

This standard is adopted from the Disability Definition and Functional Impact Accommodation Matrix developed by the BC Post-Secondary Disability Services Articulation Committee with the knowledge and support of the BC Ministry of Advanced Education and Skills Training, Disability Programs Unit (DPU). The standard applies to all applications collecting Person with Disability. Exceptions are listed in the Dispensation section.

*lasting, or expected to last for 6 months or more.

Standard

Accepted Values for Disability or Chronic Health Condition Status

The following values are accepted values for a person who identifies as a Person with Disability or Chronic Health Condition:

Accepted Data Value	Definition
Yes	A person who identifies as having a disability or a chronic health condition.
No	A person who identifies as not having a disability or a chronic health condition.
I am not sure	A person who does not know if they have a disability or a chronic health condition.
Choose not to disclose	Response for someone who chooses not to disclose.
Unknown*	A person did not select any of the above accepted values at the time of data collection. It may or may not get updated at a later point in time. *This value is only to be used in integrations where the consuming system does not allow a blank value. It should not be made available in the picklist.

Accepted Values for Diagnosis Type

A diagnosed disability or chronic health condition is one that has been formally identified by a registered health professional, of the nature of an illness or other problem by examination of the symptoms.

The following values are accepted values for a valid Diagnosis Type:

Accepted Data Value	Definition
Yes	A person who identifies as having a formal diagnosis of their disability or chronic health condition.
No	A person who identifies as not having a formal diagnosis of their disability or chronic health condition.
I am not sure	A person who does not have, or does not know if they have, a formal diagnosis of their disability or chronic health condition but identifies as disabled/chronically or episodically ill.
Choose not to disclose	Response for someone who chooses not to disclose.
Unknown*	A person did not select any of the above accepted values at the time of data collection. It may or may not get updated at a later point in time. *This value is only to be used in integrations where the consuming system does not allow a blank value. It should not be made available in the picklist.

Accepted Values for Person with Disability or Chronic Health Condition Type and Subtype

The following values are the accepted values for disability type and subtype. See Accepted Values for Functional Impact Type for accepted values for functional impact.

Accepted Data Value for Disability Type	Accepted Data Value for Disability Subtype	Description
Chronic Health Condition	Chronic Health Condition	Any health condition, disorder, disability, illness, or syndrome that is experienced over an extended period and is not considered temporary in nature. Chronic diseases usually develop slowly, last a long time, and are often progressive. Examples: arthritis, asthma, cancer, allergies, cardiac condition, cystic fibrosis, chemical sensitivities, Crohn's disease, diabetes, fibromyalgia, hepatitis, HIV/AIDS, inflammatory bowel diseases, kidney disease, lupus
Intellectual Disability	Intellectual Disability	A condition that is a combination of both intellectual functioning and adaptive functioning. Intellectual functioning refers to a person's ability to learn and is often measured using standardized tests, such as intelligence quotient (IQ) tests. Adaptive functioning refers to a person's ability to perform everyday skills or activities, and is broken down into three key areas: Conceptual: language, reading, writing, math, reasoning, knowledge and memory. Social: social judgment, interpersonal communication skills, and the ability to make and retain friendships. Practical: self-management, personal care, job responsibilities, money management, recreation, and organizing school and work tasks.
Hearing Disability	Deaf	An individual has profound hearing loss (loss of 91 + decibels).
Hearing Disability	Hard of hearing	An individual has moderate level of hearing (loss of 41 – 70 dB) to severe hearing loss (71 – 90 dB)
Mental Health Disability a.k.a. Psychiatric Disorder	Mental Health Disability	A condition that involves disturbances in thinking, emotion, and behavior, caused by complex interactions between physical, psychological, social, cultural, and hereditary influences. Examples: anxiety, bipolar, depressive, dissociative, eating, obsessive compulsive, post- traumatic stress, schizophrenia, sleep-wake, specific phobias, substance and addictive
Neurological Disability	Attention-deficit/hyper-activity disorder (ADHD).	A neurodevelopmental disorder characterized by persistent inattention, hyperactivity, and sometimes impulsivity.
	Autism Spectrum Disorder (ASD) a.k.a. Autism, Asperger's Syndrome	A neurologically-based condition characterized by persistent impairment in social interactions, repetitive behaviour patterns, and a restricted range of interests. Examples: Autism Disorder (AD), Asperger's Syndrome (AS), Retts (R), Childhood Disintegrative Disorder, Pervasive Developmental Disorder (PDD)
	Learning disability a.k.a. Specific Learning Disorder	A neurodevelopmental disorder that impacts the ability to learn or use specific academic skills, such as reading, writing or math.
	Another Neurological Condition	An impairment, or limitation due to injury or illness, that has resulted at the central nervous system, including the brain. Examples: acquired brain injury (ABI), cerebral palsy, epilepsy and other seizure disorders, fetal alcohol syndrome/fetal alcohol effects, multiple sclerosis, muscular dystrophy, neurocognitive disorders, Parkinson's disease, stroke, Tourette's syndrome, traumatic brain injury, aphasia, dysarthria
Physical Disability	Physical Disability	A substantial and long-term condition affecting a part of a person's body that impairs and limits their physical functioning, mobility, stamina or dexterity.
Visual Disability	Blind	An individual has no, or very little usable vision.
Visual Disability	Partially Sighted	An individual experience reduced visual acuity, or may have a severely reduced field of vision such as having sight only at the periphery of their visual field or having a small field of central vision.
Environmental Sensitivity a.k.a. Idiopathic Environmental Intolerance (IEI), Multiple Chemical Sensitivity (MCS)	Environmental Sensitivities	A condition that incorporates a variety of reactions an individual may have to chemical, biological or electromagnetic agents.
I am not sure	Response for a person who does not know their disability.
Choose not to disclose	Response for a person who chooses not to disclose.
Unknown*	A person did not select any of the above accepted values at the time of data collection. It may or may not get updated at a later point in time. *This value is only to be used in integrations where the consuming system does not allow a blank value. It should not be made available in the picklist.

Accepted Values for Functional Impact Type

Functional Impact	Description	Potential Related Disability Condition
Attention/Concentration	A cognitive or behavioral impact where a person struggles with attention and concentration and may have difficulty focusing for long periods reading comprehension and written expression.	ADHD anxiety bipolar depressive post-traumatic stress schizophrenia substance and addictive acquired brain injury (ABI)
Information Processing (verbal/written)	A cognitive or behavioral impact where an individual may experience difficulties in processing written and/or verbal information and therefore require more time to process information.	learning disability specific learning disorder anxiety bipolar depressive post-traumatic stress ADHD ASD
Long-term Retrieval Memory	A cognitive or behavioral impact where an individual may have difficulty in retaining information for retrieval in the future, or difficulty learning and remembering information for recall on tests or for use in assignments	learning disability specific learning disorder acquired brain injury (ABI) anxiety bipolar post-traumatic stress
Working Memory	A cognitive or behavioral impact where an individual may have difficulty in the ability to hold information in memory so that it can be manipulated or used. An individual who has reduced capacity in working memory may experience: Difficulties taking notes in class (e.g., slow or inaccurate results) Difficulty 'hanging on to' multi-step instructions presented orally Difficulty starting tasks and maintaining attention to complete them Difficulties staying organized (e.g., forgetting items) Difficulties with completing tasks that require mentally holding information in memory (e.g., doing math in one's head, multiple choice test questions)	learning disability specific learning disorder acquired brain injury (ABI) anxiety bipolar post-traumatic stress
Oral Expression	A cognitive or behavioral impact where an individual finds it difficult to express themselves in speech. Difficulties can range from individuals who speak very quietly, or who struggle to find the right words to express themselves, through to individuals with no speech at all.	Speech disorder (i.e. Dysarthria) Multiple sclerosis ALS Parkinson's disease ASD learning disability specific learning disorder traumatic brain injury stroke spoken language disorder (i.e. Aphasia) hard of hearing
Organization/Time Management	A cognitive or behavioral impact where an individual may have difficulty with executive functioning skills including reasoning and organizational abilities that allow for goal-directed activities including planning and organizational skills, self-monitoring and regulation skills, complex problem- solving and abstract reasoning abilities, as well as the ability to maintain sustained attention. Challenges in these areas can present significant barriers to individuals in meeting expectations, follow multi-step instructions and completing their work successfully.	learning disability specific learning disorder anxiety depression bipolar post-traumatic stress ASD ADHD
Social Interactions	A cognitive or behavioral impact where an individual may have difficulty with social interaction, posing challenges in understanding expectations, difficulties interacting in reciprocal social relationships, avoidance of social interactions, or difficulties with impulse control.	ASD anxiety bipolar depressive post-traumatic stress ADHD
Stress Management	A cognitive or behavioral impact where an individual may have difficulty in managing stressful situation in work or studies.	learning disability ASD anxiety bipolar depressive post-traumatic stress schizophrenia substance and addictive arthritis cancer cardiac condition Chronic Fatigue Syndrome Fibromyalgia HIV/AIDS Lupus Multiple Sclerosis
Written Expression	A cognitive or behavioral impact where an individual may have difficulties putting their thoughts in writing, which may result in their writing not fully reflecting their knowledge of the subject. Writing may require considerable time and effort, and the results may be poorly organized and contain errors in spelling, grammar, and punctuation.	learning disability specific learning disorder ADHD ASD traumatic brain injury
Dexterity	A physical impact where an individual can have difficulty in the ability to manipulate objects and/or use arms, hands, or fingers, which impacts tasks such as writing by hand, drawing, holding and manipulating small objects, or typing. Everyday activities can require additional effort for people with dexterity difficulties, so they may experience fatigue, which can impact their academic performance.	spina bifida stroke spinal cord injury head injury
Hearing	A physical impact where an individual can have difficulty hearing have some residual hearing.	Deaf Hard of hearing
Fatigue/Stamina	A physical impact where an individual can experience significant fatigue due to the impact of a disability or medical condition.	Arthritis cancer cardiac condition Chronic Fatigue Syndrome Depression fibromyalgia HIV/AIDS lupus Multiple Sclerosis
Mobility	A physical impact where an individual may have difficulty walking, travelling up a set of stairs, carrying heavier objects, standing for long periods or difficulty positioning or lifting objects.	spina bifida stroke spinal cord injury head injury acquired brain injury poliomyelitis osteoarthritis rheumatoid arthritis cerebral palsy multiple sclerosis amputations carpal tunnel syndrome
Pain	A physical impact where an individual may experience chronic pain that may fluctuate over a period of time.	arthritis cancer cardiac condition cystic fibrosis Crohn's disease fibromyalgia HIV/AIDS inflammatory bowel diseases kidney disease lupus
Seizure	A physical impact where an individual may experience seizures.	epilepsy and other seizure disorder head injury stroke acquired brain injury (ABI)
Vision	A physical impact where an individual may be impacted by vision loss.	Blind Partially-sighted
I am not sure	Response for a person who does not know their disability.
Choose not to disclose	Response for a person who chooses not to disclose.
Unknown*	A person did not select any of the above accepted values at the time of data collection. It may or may not get updated at a later point in time. *This value is only to be used in integrations where the consuming system does not allow a blank value. It should not be made available in the picklist.

Accepted Values for Disability or Chronic Health Condition Severity

Disability Severity indicates the level of difficulty a person may have with their daily activities as a result of their disability or chronic health condition. The following are the accepted values for Disability or Chronic Health Condition Severity:

Accepted Data Value
No difficulty
Some difficulty
A lot of difficulty
Cannot do at all

Accepted Values for Disability or Chronic Health Condition Frequency

Disability Frequency refers to how often a disability or chronic health condition limits a person's regular daily activities. The following are the accepted values for Disability or Chronic Health Condition Frequency:

Accepted Data Value
Never
Rarely
Sometimes
Often
Always

Guideline for Data Collection

Data Trustee

For Student Data: Registrar
For HR Data: Associate VP, Equity and Inclusion Office

Data Steward

For Student Data: Registrar
For HR Data: Associate VP, Equity and Inclusion Office

Purpose for Collection

In alignment with UBC's commitments to inclusive excellence and anti-racism and in support of numerous strategic initiatives aiming to advance equity, diversity, and inclusion at UBC, data will be used to enable the university to better understand a person's experience at UBC, support inclusion and success, and assess the progress of equity, diversity, and inclusion:

Equity

Collected data can support the institution to improve its understanding of a person's accessibility to the resources they need to succeed, improve their UBC journey, and positively enhance their overall experience. Collected information may also signal systemic barriers and inequities where they exist including observation of patterns or trends with respect to recruitment, retention, participation, engagement, learning, performance, success, and support for individuals.

Diversity

Collected data will improve understanding of the nuance and complexity of UBC's diverse community including how it compares with other institutions or communities, and how it changes or needs to change over time. Understanding the different diverse groups will enhance UBC's allocation of resources to ensure equitable treatment and opportunities for all individuals regardless of their identity or background.

Inclusion

Collected data will inform the understanding of the extent to which experiences may differ for people of different identities and backgrounds. This includes the extent to which a person feels welcome, respected, and that they belong.

Process for Collection

This data must be self-declared, and not derived or collected from a third party. An individual can update their response at any time.
The following are the ways in which the data can be collected:

Proposed:

Through Centrally Administered Surveys e.g. NUBC, Employment Equity Survey, etc.
Through Central Administrative systems e.g. Workday

System of Record

Specify the system that will be the source of truth for enterprise-level data
…

Pre-Approved Data Access in the System of Record

Specify who and why, on a day-to-day basis, can access the data without further approvals required e.g.

PAIR
Centre for Accessibility (Vancouver)
Disability Resource Centre (Okanagan)

Data Access Request Process for All Others

If your department is not listed in the Who Can Access the Data section above, a Data Access Request (DAR) is needed. Visit ACCESS UBC DATA for more information and to access a Data Access Request form.

Data can only be shared at an aggregated level. If case-level data is needed, approval must come from the Data Access Committee.

Guideline on Phrasing of Person with Disability Question in a Survey

Do you identify as a person with a disability or chronic health condition?
Do you identify as a person who has a formal diagnosis for your condition?
Please indicate which of the following best describe any disability or chronic illness you have. Please check all that apply.
Please indicate which of the following categories best describe any impairment, functional restriction, limitation, and/or barrier you are facing. Please check all that apply.
Please indicate the level of difficulty you have with your daily activities as a result of your disability or chronic health condition.
Please indicate how frequently your disability or chronic health condition limits your regular daily activities.

Compliance

The above standard must be complied at every stage of the data lifecycle with the exception of any dispensations (see Dispensation section).

All applications must collect data as recommended in this standard.
Enterprise Data Integration must adopt this standard.

Dispensation

Legacy systems are exempt from this data standard. As systems are replaced, adoption of this standard is required. Examples of legacy systems are:

Student Information System (SIS)

As existing systems change to adopt this standard, the Enterprise Data Governance team needs to be informed.