Capstone Team 23 CASA Survey

Informed Consent

Project Title

The impact that COVID-19 had on caregivers of children or youth with special needs.

Purpose of the Study

The goal of this survey is to find out how families or caregivers of children or youth with special needs are currently coping. This study will be used to uncover the changing needs of families due to COVID-19. This survey is a joint effort by students in the Northern Alberta Institute of Technology’s (NAIT) Bachelor of Technology program and the Child and Adolescent Services Association (CASA) in Edmonton.

Participation and Withdrawal

Participation is entirely voluntary and anonymous. No identifying information will be collected. You can skip or refrain from answering any question. Only those participants who hit the final submit button will be participating in the study. To withdraw from the survey, simply close your browser anytime before hitting the final submit button. Once the final submit button is pressed, the survey cannot be withdrawn from because it is anonymous, therefore we would be unable to remove any responses.

The survey will take approximately 12-15 minutes to complete.

Are there Risks or Benefits if I participate?

Participation in this survey poses minimal risk to participants. This means that the potential harm you may encounter through participation in this study is no greater than the possible harm you might encounter in any other aspect of your everyday life. If you find any of these questions triggering or are needing support, please reach out to Alberta’s Mental Help Line at 1-877-303-2642, Alberta’s Health Link at 811, or Alberta’s Helpline at 211.

The questions have been formulated based on other studies conducted in Canada. The results of this Alberta-based study will be used for comparison to other provinces and to make recommendations to support families.

Benefits

The survey results can help the organizations supporting people with special needs to understand their current conditions and needs. In addition, it can be used to persuade the government to change the policies, funding, and support programs for the betterment of families with special needs.

What happens to the information I provide?

Once the survey closes, the anonymous data will be stored on a locked, secure student's USB drive for the duration of the project. This survey will form part of an eight-month capstone project. After this time, the locked, secure student's USB will be destroyed. If you would like to find out about the results of this survey, please email naitcapstoneteam23@gmail.com to be added to a mailing list with updates. (You do not have to complete the survey to get the results).

Questions/Concerns?

If you have questions or require further clarification regarding this research, please contact the student team: naitcapstoneteam23@gmail.com

If you have any concerns about how you’ve been treated as a participant, please contact NAIT’s research ethics board at REB@nait.ca
I agree to the Informed Consent.
Tell Us About You

Please answer the following questions to the best of your abilities. You can skip any questions you feel you don't want to answer.
Under $25,000$25,000-50,000$50,000-75,000$75,000-100,000$100,000-125,000$125,000-150,000Over $150,000Prefer Not to Answer
Married or living as marriedWidowedDivorced or separatedNever MarriedOtherPrefer Not to Answer
How many dependents do you have?
Please enter a whole number.
How old is Dependent 1?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
How old is Dependent 2?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
How old is Dependent 3?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
How old is Dependent 4?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
How old is Dependent 5?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
How old is Dependent 6?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
How old is Dependent 7?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
How old is Dependent 8?
Please enter a whole number.
Indigenous (i.e., First Nations, Métis or Inuk)African/CaribbeanAsianEuropean/CaucasianLatin AmericanMiddle EasternI Don't KnowPrefer Not to AnswerOther
YesNoPrefer not to answer
Attention-deficit/hyperactivity disorder (ADHD)Autism Spectrum DisorderBrain injuryCerebral PalsyChronic painComplex Developmental Behavioural ConditionFetal Alcohol Spectrum DisorderFlexibility limitationHand function limitationIntellectual disabilityLearning disabilityMemory loss, Hearing lossNeurological disordersPsychological, psychiatric, or mental health conditionSeizuresVision or sight lossWalking limitationOther
YesNoPrefer not to answer
UrbanSuburbanRuralNot ApplicablePrefer Not to AnswerOther
On ReserveOff ReserveNot ApplicablePrefer Not to AnswerOther
Needs, Stressors, and Impacts from COVID-19

In this section, we ask about needs and stressors that you may or may not have experienced. You will note how often you potentially experience stress over each issue and how has COVID-19 made it worse or better?

Are there any other stressor(s) your family is experiencing that were not mentioned above? How have they been impacted by COVID-19?

Are there any other needs that your family carries that are not previously listed?
YesNoPrefer Not to Answer
Please specify those unmet need(s).

YesNoPrefer Not to Answer
Please explain.
What is the most significant impact (good or bad) has COVID-19 had on you/your dependent(s)?
Supports and Services

In this section, we would like to explore supports and services that you or your child may or may not access and the impact of COVID-19 on these services.
Please take a moment to understand the eligibility criteria for the Family Support for Children with Disabilities (FSCD) program before answering the following questions.

The eligibility criteria for FSCD funding includes that:
- A child must be with a disability and be under 18 years of age.
- A child must be a Canadian citizen or permanent resident of Canada.
- The individual applying for the program must be the child’s parent or guardian.
- The child must reside in Alberta.

What other groups, if any, are you or your family receiving supports from?

Are there other FSCD funded service(s) Or support(s) that you and your family access that we have not been included in this survey? If yes, state how the use of those service(s) changed for you or your family.
YesNoPrefer Not to Answer
What purpose did you connect with a FSCD service assessor for?
Did you have any issues (time delays, other) in making a connection with a FSCD service assessor? Please explain.
Is there anything you would like us to know about your FSCD related experiences during this time?
Increased funding usable for equipment, flexible rules around professional signature on justification forms adjustments to policy and practice to ensure continued access to services and supports where possible flexible use of respite funds, relaxed rules around access to at home programRespite/Supported child development program available during school hours, temporary suspension of maintenance paymentsI have not been able to access any of the aboveI have not tried to access any of the abovePrefer not to answerOther
YesNo

Please share any additional information about your family's respite care.
Is there anything else you would like to share?
To help us prevent autofill responses from bots, please verify that you are human.*
Thank you for completing this survey! We appreciate your time and feedback.

If you find any of these questions triggering or are needing support, please reach out to Alberta’s Mental Help Line at 1-877-303-2642, Alberta’s Health Link at 811, or Alberta’s Helpline at 211.

If you do not hit submit, all data will be lost and it will not be included in this study.

If you would like to withdraw your answers from the study, please close the survey.

If you have questions or require further clarification regarding this research, please contact the student team, Capstone Team 23: naitcapstoneteam23@gmail.com

To anonymously submit it to the researchers, click the SUBMIT button below.
Should be Empty:

Rows	How often is each stressor experienced in the last 12 months?	Is this worse than the 12 months before COVID-19?
Access to housing
Access to services, medical support, & care
Becoming seriously ill
Boredom
Catching COVID
Child(ren)’s fears of abandonment
Computer or laptop accessibility
Death of loved ones
Finances
Food Security/Access to food
Friends or Family in household
Friends or Family outside household
Future Plans
General anxiety/world stability
Getting medication
Government support
Internet
Loneliness/sense of isolation as a caregiver
Losing a job
Marriage/romantic relationship
Personal Relationships
Personal safety
Pet(s)
Respite funding
School or work
School or work for children
Social Interactions
Transportation safety

Rows	Was this need fully met before COVID-19? (Y/N)	Is this need being fully met currently? (Y/N)	Is your family currently receiving support for this need? (Y/N)	Main sources of support Government (G), Community Organizations (CO), Others (O) (Family, Friends, Neighbours)
Access to food/ shops/groceries
Accessible housing
Accessible media and websites
Attendant care
Case management
Computers or Laptops to access online resources and programs
Drug / medical coverage
Emotional counseling
Equipment/medical supplies/aids
Financial planning
General health care
Household chores and personal care support
Income support
Internet
Peer support
Recreational & leisure programs
Respite
Specialized health care
Supplies of clothing/cleaning products / PPE
Supporting children’s needs
Transportation

Rows	Very Positive Impact	Positive Impact	Neutral	Negative Impact	Very Negative Impact
Your family’s ability to cope with change
Your mental health or those in your household
Your family’s financial status
The quality of FSCD services and supports you have been able to access
Your child’s or children’s social and peer relations
Your child’s or children’s quality of education
Your child’s or children’s eating habits changed since the start of the pandemic
Your child’s or children’s physical activity or exercise habits changed since the start of the pandemic
Access to specialized health care for your child or children with special needs

Rows	Supports being received currently	Main sources of support Government (G), Community Organizations (CO), Others (O) (Family, Friends, Neighbours)
Access to health professional(s)
Community aide
Computers or Laptops to access online resources and programs
Counselling
Daycare services
Education plans
Financial support related to COVID-19
Flexibility in using government funding/subsidies
Mental health supports
Parent Coaching
Recreational products (i.e., trampoline, equipment)
Recreational programs (School or community funded activities or adaptive programs)
Respite
Virtual intervention
Virtual peer support groups
Webinars (support strategies, how to cope, information on COVID-19)

Rows	Has your family accessed this service or support?	Has use of this service or support changed during COVID-19?
Counselling
Help coordinating and getting supports and services
Help from aides who provide personal care, community, behavioural or developmental support
Help planning your child’s transition during key changes or life events such as when they: are first diagnosed or the disability is identified, return home from the hospital, start an early intervention program, start a new school program, approach age 16 and plan for adulthood.
Help with clothing or footwear that relates to your child’s disability
Help with some costs for medications, prescribed diets, ambulance or medical supplies
Help with some of the costs to take your child to medical appointments such as parking, mileage, meals, accommodation and sibling care
Information about government programs and services, community supports and local resources
Respite services in or outside your home to give you a temporary break
Specialized services for children with severe disabilities
Temporary living arrangements for your child away from home
The same FSCD worker assigned to a family with more than one eligible child

Rows	Frequency	Is this more or less than the 12 months prior to COVID-19?
How often have you accessed respite services within the last 12 months?

Tell Us About You

Needs, Stressors, and Impacts from COVID-19

Supports and Services