Lakeland Centre for FASD | Cold Lake & Surrounding Areas

This survey will be used to gather information about the respite needs of parents / caregivers of children with FASD in the Lakeland area. The information will be used to advocate for a range of respite services in the Lakeland area. Your responses will be kept strictly confidential and will be combined with those from other families; no one will know your personal responses.

For the purposes of this survey, respite care is defined as: A temporary relief or break away from a stressful situation in the form of planned or emergency supervised care for a child with special needs.

Name:
Email Address:
1. What category(ies) best describe your child(ren) with FASD? For each child in your home with FASD, check all that apply. If you only have one child with FASD, just use the first line. 1st (or only child)	Cognitive Disability or Developmental Delay Mental Health Diagnosis Behavioral Diagnosis Physical Disability Mobility Difficulties Vision Impairment Hearing Impairment Feeding Complications
2nd Child	Cognitive Disability or Developmental Delay Mental Health Diagnosis Behavioral Diagnosis Physical Disability Mobility Difficulties Vision Impairment Hearing Impairment Feeding Complications
3rd Child	Cognitive Disability or Developmental Delay Mental Health Diagnosis Behavioral Diagnosis Physical Disability Mobility Difficulties Vision Impairment Hearing Impairment Feeding Complications
4th Child	Cognitive Disability or Developmental Delay Mental Health Diagnosis Behavioral Diagnosis Physical Disability Mobility Difficulties Vision Impairment Hearing Impairment Feeding Complications
5th Child	Cognitive Disability or Developmental Delay Mental Health Diagnosis Behavioral Diagnosis Physical Disability Mobility Difficulties Vision Impairment Hearing Impairment Feeding Complications
2. If short or overnight respite care were available to you for your child(ren) with FASD, which type(s) would you use? (Check all that apply)	Trained care provider come to my home Local weekend day program Trained evening babysitter In-home care with family/friends In-home care with a provider who has specialized training related to my child’s FASD In-home care with a provider with medical certification (e.g., certified medical assistant) In-home care with a nurse (LPN or RN) Care in a facility with trained respite providers Care in a facility with trained respite providers and a nurse present Care in a facility where family members, friends, or acquaintances could provide care and also receive training if needed *Other
If 'other' please specify:
3. If respite care was available during the school year (Sept – June), how many hours a month would you use those services on average?	hours
4. If respite care was available during the summer months (July-August), how many hours a month would you use those services on average?	hours
5. How far would you be willing to travel for short daytime or evening respite care?	No Travel 1 - 15 kilometres 16 – 30 kilometres 31 – 50 kilometres 51 and over kilometres
6. How far would you be willing to travel for overnight respite care?	No Travel 1 - 15 kilometres 16 – 30 kilometres 31 – 50 kilometres 51 and over kilometres
7. If respite care was available to you at all of the following times, when would you use it? Rank your top three choices: 1st	Before and after school Summer/school breaks Weekday daytime care Overnight and weekend care Vacation Care When parent/family reaches critical need for respite care giving Unexpected Emergency Summer Camp *Other
*If "other" please describe :
7. If respite care was available to you at all of the following times, when would you use it? Rank your top three choices: 2nd	Before and after school Summer/school breaks Weekday daytime care Overnight and weekend care Vacation Care When parent/family reaches critical need for respite care giving Unexpected Emergency Summer Camp *Other
*If "other" please describe :
7. If respite care was available to you at all of the following times, when would you use it? Rank your top three choices: 3Rrd	Before and after school Summer/school breaks Weekday daytime care Overnight and weekend care Vacation Care When parent/family reaches critical need for respite care giving Unexpected Emergency Summer Camp *Other
*If "other" please describe :
8. What employment changes have you or your spouse made regarding care of your child(ren) with FASD?	No employment changes have been necessary for either One parent gave up a job to care for child with FASD One parent declined promotion opportunity because the new position would cause too much family strain. One parent has had to rearrange their work schedule or work from home which has caused a decrease in earning potential.
9. Have you used respite care in the past?	Yes No (if checked, skip to question 15)
10 a. When you have used respite care, whom did you use? (Check all that apply)	In-home with babysitter, relatives or close friends Other daycare facility Summer Camp Foster care or Host home *Other
*If 'other' please describe:
10 b. What was the maximum distance, in kilometres, you traveled to utilize this respite care?	km
11 a. Have you always been able to access respite care when you have needed it?	Yes (skip to question 14) No
11 b. When you have NOT been able to get respite care when you needed it, it was because: Rank your three most frequent reasons: 1st	Could not afford it I felt that respite providers wouldn’t be able to handle my child(ren)'s needs Respite providers told me they wouldn't be able to handle my child(ren)'s needs No transportation / accessibility Respite care was too far away Do not trust respite providers Not aware of any respite opportunities Not available for the age of my child(ren) I had a bad experience in the past with respite care *Other
*If "other" please describe :
Rank your three most frequent reasons: 2nd	Could not afford it I felt that respite providers wouldn’t be able to handle my child(ren)'s needs Respite providers told me they wouldn't be able to handle my child(ren)'s needs No transportation / accessibility Respite care was too far away Do not trust respite providers Not aware of any respite opportunities Not available for the age of my child(ren) I had a bad experience in the past with respite care *Other
*If "other" please describe :
Rank your three most frequent reasons: 3rd	Could not afford it I felt that respite providers wouldn’t be able to handle my child(ren)'s needs Respite providers told me they wouldn't be able to handle my child(ren)'s needs No transportation / accessibility Respite care was too far away Do not trust respite providers Not aware of any respite opportunities Not available for the age of my child(ren) I had a bad experience in the past with respite care *Other
*If "other" please describe :
12. Regarding your most recent respite care experience, what did you or your care provider agency pay for respite?	0 - $5 /hr $6 - $10 /hr $11 - $15 /hr $16 - $20 /hr $21 - $30 /hr Over $30 /hr Don’t know
13. What monthly out-of-pocket expenses for respite care do you currently have?	$
14. How have you paid for respite? (Check all that apply)	Personal Funds With financial assistance from extended family such as grandparents, rich aunt, etc. Child & Family Services Supports to Children with Disabilities, CFSA Insurance *Other
*If 'other' please specify
15. Would you or your friends, family members or other acquaintances participate in a free respite training course for your child?	Yes No Not sure
16. What benefits do you hope you and/or your family might gain by using respite care? Rank your top three choices: 1st	Time to regroup, recuperate and rejuvenate Time to build relationships with family/spouse Time to go to special events Time to run errands Time to go to doctor’s appointments Time to sleep Prevention of harm to self or child(ren) Success in maintaining in-home or foster care placement Change in employment without consequence of losing health insurance Higher educational goals Hobbies Regularly scheduled events like sports/music for other family members *Other
*If "other" please describe :
Rank your top three choices: 2nd	Time to regroup, recuperate and rejuvenate Time to build relationships with family/spouse Time to go to special events Time to run errands Time to go to doctor’s appointments Time to sleep Prevention of harm to self or child(ren) Success in maintaining in-home or foster care placement Change in employment without consequence of losing health insurance Higher educational goals Hobbies Regularly scheduled events like sports/music for other family members *Other
*If "other" please describe :
Rank your top three choices: 3rd	Time to regroup, recuperate and rejuvenate Time to build relationships with family/spouse Time to go to special events Time to run errands Time to go to doctor’s appointments Time to sleep Prevention of harm to self or child(ren) Success in maintaining in-home or foster care placement Change in employment without consequence of losing health insurance Higher educational goals Hobbies Regularly scheduled events like sports/music for other family members *Other
*If "other" please describe :
17. What benefits do you hope your child(ren) with FASD might gain from respite care? Rank your top three choices: 1st	Socialization Acquiring new skills Adapting to new environments Break from family Something special just for child Fun without expectations Exposure to new activities *Other
*If "other" please describe:
Rank your top three choices: 2nd	Socialization Acquiring new skills Adapting to new environments Break from family Something special just for child Fun without expectations Exposure to new activities *Other
*If "other" please describe:
Rank your top three choices: 3rd	Socialization Acquiring new skills Adapting to new environments Break from family Something special just for child Fun without expectations Exposure to new activities *Other
*If "other" please describe:
18. Thinking about the past six months, answer the following according to the scale provided: a. My physical health has been negatively affected	Never Seldom Sometimes Frequently All the time
b. I have seen a mental health provider	Never Seldom Sometimes Frequently All the time
c. I take medication to help stabilize my mood	Never Seldom Sometimes Frequently All the time
d. I have had to call a trusted friend/relative when I feel sad, panicked or desperate	Never Seldom Sometimes Frequently All the time
e. I have been hopeful about the future	Never Seldom Sometimes Frequently All the time
f. I was worried about situation in which I might panic and make a fool of myself	Never Seldom Sometimes Frequently All the time
g. I have found that I was very irritable with my child(ren) and others	Never Seldom Sometimes Frequently All the time
h. I have avoided or feared taking my child(ren) and/or others due to unpredictability	Never Seldom Sometimes Frequently All the time
i. I have needed out of home placement for one or more of my children	Never Seldom Sometimes Frequently All the time
j. I have had difficulty caring for my family or myself	Never Seldom Sometimes Frequently All the time
19. For each age group listed below, indicate the total number of children in your home: a. 0-5 yrs
b. 6-10 yrs
c. 11-15 yrs
d. 16-20 yrs
e. Over 20 yrs
20. For each age group listed below, indicate the number of children with FASD in your home: a. 0-5 yrs
b. 6-10 yrs
c. 11-15 yrs
d. 16-20 yrs
e. Over 20 yrs
21. Please provide your postal code:
22. Approximate Yearly Family Income	Less than $25,000 $25,000 - $50,000 $75,000 - $100,000 $100,000 - $150,000 $150,000 - $175,000 $175,000 - $200,000 Over $200,000
23. Marital Status:	Married or with Significant Other Divorced Divorced and Remarried Single Widowed
24. Living Arrangement:	Living with Extended Family Living in own home/apartment
25. What is the primary language spoken in the home?
26. Any other comments?