Parent’s MD Respite Care Survey Results
by Rich
Clingman (06/21/01)
(I have
noticed that some graph bars are not the correct size. I.e.: A “58%” bar may be
shorter than a “10%” bar. I’ll fix these at some point.)
The MD Respite Care Survey for parent with children of any form of
muscular dystrophy was conducted from March, 2000 through June, 2001.
There were 73 responses to the survey, a summary of which is below. A
graphical analysis of the results is also included.
These 73 families represent 83 children with MD, 79 boys and 4
girls.
These surveys indicate muscular dystrophy is also affecting 78
children who do not have MD themselves—the siblings of those with MD. That
represents nearly a 1:1 impact.
Of these 73 families, 58 have one boy with MD, 10 have two boys
with MD, 1 has three boys with MD, and 4 have one girl with MD.
The ages cover each range from 0-3yo to 19+yo, with the majority in the 4-15yo
range.
Duchenne Muscular Dystrophy (DMD) represents 64 or 87.67% of the
cases reported, Becker (BMD): 1 case, plus 11 (15.07%) Other MDs.
Three (4.11%) are also Developmentally Disabled.
The majority of children require assistance with dressing (71.23%)
and toileting (69.86%). One-third (32.88%) require assistance with feeding,
while 4 (5.48%) utilize a GI Tube for feeding.
Nearly half (46.58%) use an electric wheelchair and 19.18% use a manual
wheelchair. Eighteen families reported their MD kids use braces or a
walker. I believe an even larger number utilize “night splints”, but
this was not an option in this survey.
The need for breathing assistance through the use of a ventilator
was reported by 8 families (10.96%).
Almost half (43.84%) of the families reported their MD kids require oral
medications. None reported the need for shots or IVs.
Both In-home and Out-of-home respite care was desired by 57
(78.18%) of families. Hospice-level respite care (with skilled nursing)
was desired by 18 (24.66%) of families.
Of the families responding, only 8 (10.96%) knew any agency that
provided free or low-cost respite care for children with MD. Of these, several
reported services available outside the US. That leaves 65 (89.04%) who
are aware of no such services.
The vast majority of families (93.15%) indicated their insurance
company would not pay for respite care, or they were unsure.
The services would need to cost $20/night or less according to 55 (75.34%) or
those responding.
Having respite care available is “long overdue” or “a great thing”
according to 65 (89.04%) families.
Nearly two-thirds (65.75%) indicated they currently use no respite
care. Volunteer respite care (where training could be provided for
the caregiver) was appealing to 55 (75.34%), and 59 (80.73%) would or might
participate in co-op respite care, exchanging one weekend/mo with
another family.
Of the respondents, 7 (9.59%) indicated they are outside the US, while
another 7 (9.59%) gave no indication of their location.
Parent’s MD Respite Care Survey Results
|
|
|
|
Tallied Responses
|
|
|
73 Responses Reported
|
Count
|
Percent
|
Graph
|
|
|
1.
Who are you?
|
|
|
 Parent of MD Child(ren)
|
73
|
100.00%
|
|
|
|
Parent of Deceased MD
Child(ren)
|
0
|
0.00%
|
|
|
|
Child or Adult with MD: STOP!
Use survey link above.
|
0
|
0.00%
|
|
|
|
MD-Related Professional: STOP!
Use survey link above.
|
0
|
0.00%
|
|
|
|
Other: STOP! Use survey
link above.
|
0
|
0.00%
|
|
|
|
 No Response
|
0
|
0.00%
|
|
|
|
2.
How many children do you have with muscular dystrophy (MD)?
|
|
|
None
|
0
|
0.00%
|
|
|
|
1
|
62
|
84.93%
|
|
|
|
2
|
10
|
13.70%
|
|
|
|
3
|
1
|
1.37%
|
|
|
|
More
|
0
|
0.00%
|
|
|
|
 No Response
|
0
|
0.00%
|
|
|
|
3.
How many BOYS do you have with MD?
|
|
|
None
|
4
|
5.48%
|
|
|
|
1
|
58
|
79.45%
|
|
|
|
2
|
10
|
13.70%
|
|
|
|
3
|
1
|
1.37%
|
|
|
|
More
|
0
|
0.00%
|
|
|
|
 No Response
|
0
|
0.00%
|
|
|
|
4.
How many GIRLS do you have with MD?
|
|
|
None
|
68
|
93.15%
|
|
|
|
1
|
4
|
5.48%
|
|
|
|
2
|
0
|
0.00%
|
|
|
|
3
|
0
|
0.00%
|
|
|
|
More
|
0
|
0.00%
|
|
|
|
 No Response
|
1
|
1.37%
|
|
|
|
5.
How many NON-MD children?
|
|
|
None
|
22
|
30.14%
|
|
|
|
1
|
29
|
39.73%
|
|
|
|
2
|
15
|
20.55%
|
|
|
|
3
|
5
|
6.85%
|
|
|
|
More
|
1
|
1.37%
|
|
|
|
 No Response
|
1
|
1.37%
|
|
|
|
6.
What age(s) are your MD children?
|
|
|
 0-3 years old
|
5
|
6.85%
|
|
|
|
4-6 years old
|
15
|
20.55%
|
|
|
|
7-9 years old
|
10
|
13.70%
|
|
|
|
10-12 years old
|
16
|
21.92%
|
|
|
|
13-15 years old
|
23
|
31.51%
|
|
|
|
16-18 years old
|
8
|
10.96%
|
|
|
|
19+ years old
|
7
|
9.59%
|
|
|
|
 No Response
|
0
|
0.00%
|
|
|
|
7.
Which MDs?
|
|
|
Duchenne MD
|
64
|
87.67%
|
|
|
|
Becker MD
|
1
|
1.37%
|
|
|
|
Also Developmentally-Disabled
|
3
|
4.11%
|
|
|
|
Other
|
11
|
15.07%
|
|
|
|
 No Response
|
0
|
0.00%
|
|
|
|
8.
Status & Level of Care Required:
|
|
|
Braces
|
14
|
19.18%
|
|
|
|
Walker
|
4
|
5.48%
|
|
|
|
Manual Wheelchair
|
14
|
19.18%
|
|
|
|
Electric Wheelchair
|
34
|
46.58%
|
|
|
|
Respirator/Ventilator
|
8
|
10.96%
|
|
|
|
Medications (Oral or Topical)
|
32
|
43.84%
|
|
|
|
Shots/IVs/Finger-pricks
Required
|
0
|
0.00%
|
|
|
|
GI Tube Feeding
|
4
|
5.48%
|
|
|
|
Dressing Assistance
|
52
|
71.23%
|
|
|
|
Toileting Assistance
|
51
|
69.86%
|
|
|
|
Feeding Assistance
|
24
|
32.88%
|
|
|
|
Respirator Mgt/Suctioning
|
7
|
9.59%
|
|
|
|
Other
|
19
|
26.03%
|
|
|
|
 No Response
|
3
|
4.11%
|
|
|
|
9.
When would you like IN-HOME respite (MD-skilled 'baby-sitter')?
|
|
|
None
|
10
|
13.70%
|
|
|
|
Day-Time
|
19
|
26.03%
|
|
|
|
Evenings
|
35
|
47.95%
|
|
|
|
Over-Night
|
20
|
27.40%
|
|
|
|
Weekend
|
32
|
43.84%
|
|
|
|
Other
|
15
|
20.55%
|
|
|
|
 No Response
|
1
|
1.37%
|
|
|
|
10.
When would you like OUT-OF-HOME respite (to trained family, group
activities, camp, etc.)?
|
|
|
None
|
21
|
28.77%
|
|
|
|
Day-Time
|
16
|
21.92%
|
|
|
|
Evenings
|
6
|
8.22%
|
|
|
|
Over-Night
|
9
|
12.33%
|
|
|
|
Weekend
|
27
|
36.99%
|
|
|
|
Other
|
14
|
19.18%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
11.
When would you like HOSPICE-LEVEL care (w/ skilled nursing)?
|
|
|
None
|
43
|
58.90%
|
|
|
|
Day-Time
|
8
|
10.96%
|
|
|
|
Evenings
|
7
|
9.59%
|
|
|
|
Over-Night
|
9
|
12.33%
|
|
|
|
Weekend
|
9
|
12.33%
|
|
|
|
Other
|
6
|
8.22%
|
|
|
|
 No Response
|
6
|
8.22%
|
|
|
|
12.
Do you know of any agency in the U.S. which provides free/low-cost respite
care for MD kids?
|
|
|
No
|
64
|
87.67%
|
|
|
|
Yes (Name/Phone)
|
8
|
10.96%
|
|
|
|
 No Response
|
1
|
1.37%
|
|
|
|
13.
Have your children attended an MDA or other camp?
|
|
|
Yes
|
40
|
54.79%
|
|
|
|
No
|
31
|
42.47%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
14.
How did it go?
|
|
|
N/A
|
26
|
35.62%
|
|
|
|
Great
|
25
|
34.25%
|
|
|
|
Okay
|
8
|
10.96%
|
|
|
|
Blaa
|
7
|
9.59%
|
|
|
|
 No Response
|
7
|
9.59%
|
|
|
|
15.
How does your child(ren) react to new situations (i.e.: respite care)?
|
|
|
Adventurous-Enjoys New
Experiences
|
16
|
21.92%
|
|
|
|
Cautious-Opens Up Slowly
|
39
|
53.42%
|
|
|
|
Reluctant-Will Need Convincing
|
11
|
15.07%
|
|
|
|
Frightful/Resentful
|
3
|
4.11%
|
|
|
|
 No Response
|
4
|
5.48%
|
|
|
|
16.
Would you be interested in free/low-cost MONTHLY weekend camps?
|
|
|
Yes
|
49
|
67.12%
|
|
|
|
No
|
20
|
27.40%
|
|
|
|
Already participate with
|
2
|
2.74%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
17.
Would you be interested in free/low-cost daytime outings for your kids
(baseball games, etc.)?
|
|
|
Yes
|
61
|
83.56%
|
|
|
|
No
|
8
|
10.96%
|
|
|
|
Already participate with
|
1
|
1.37%
|
|
|
|
 No Response
|
3
|
4.11%
|
|
|
|
18.
Who do you currently use for respite care?
|
|
|
No respite care used
|
45
|
61.64%
|
|
|
|
Friend, Family or Other
|
21
|
28.77%
|
|
|
|
Respite Service (name, phone)
|
5
|
6.85%
|
|
|
|
 No Response
|
3
|
4.11%
|
|
|
|
19.
Does your child(ren)'s health insurance cover respite care costs?
|
|
|
No
|
26
|
35.62%
|
|
|
|
Not Sure
|
38
|
52.05%
|
|
|
|
Skilled-Nursing Care
|
5
|
6.85%
|
|
|
|
Non-Skilled Care
|
1
|
1.37%
|
|
|
|
Insurance Company:
|
6
|
8.22%
|
|
|
|
 No Response
|
4
|
5.48%
|
|
|
|
20.
What would be an affordable cost if we cannot provide respite for free?
|
|
|
Would need to be free
|
13
|
17.81%
|
|
|
|
$10/night
|
23
|
31.51%
|
|
|
|
$20/night
|
19
|
26.03%
|
|
|
|
$30/night
|
9
|
12.33%
|
|
|
|
Other:
|
4
|
5.48%
|
|
|
|
 No Response
|
5
|
6.85%
|
|
|
|
21.
How important is this type of service to you or other MD families?
|
|
|
Long Overdue
|
25
|
34.25%
|
|
|
|
A great thing
|
40
|
54.79%
|
|
|
|
It'd be okay
|
6
|
8.22%
|
|
|
|
Probably wouldn't use it
|
0
|
0.00%
|
|
|
|
A waste of time and energy
|
0
|
0.00%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
22.
Volunteer Respite: If we provide training & support, who could you find
to help with respite?
|
|
|
Not Interested In Volunteer
Respite
|
13
|
17.81%
|
|
|
|
Family Members
|
30
|
41.10%
|
|
|
|
Friends & Neighbors
|
26
|
35.62%
|
|
|
|
Church Members
|
13
|
17.81%
|
|
|
|
Other
|
15
|
20.55%
|
|
|
|
 No Response
|
5
|
6.85%
|
|
|
|
23.
Would you participate in Co-Op Respite (trade 1 weekend/month with another
local MD family)?
|
|
|
Yes
|
27
|
36.99%
|
|
|
|
No
|
12
|
16.44%
|
|
|
|
Maybe
|
32
|
43.84%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
24.
Grant providers will want the following: How would you classify your
family's ethnic background?
|
|
|
Decline To Answer
|
1
|
1.37%
|
|
|
|
Caucasian, Non-Hispanic
|
59
|
80.82%
|
|
|
|
Hispanic
|
0
|
0.00%
|
|
|
|
African-American
|
0
|
0.00%
|
|
|
|
American Indian
|
0
|
0.00%
|
|
|
|
Asian/Pacific Islander
|
3
|
4.11%
|
|
|
|
Other
|
8
|
10.96%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
25.
What is your family's primary language?
|
|
|
English
|
68
|
93.15%
|
|
|
|
Other
|
3
|
4.11%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
26.
Contact Info (City, State, Zip needed. The rest is requested but optional):
|
|
|
Your
Name
|
58
|
79.45%
|
|
|
|
Address
|
47
|
64.38%
|
|
|
|
City
|
68
|
93.15%
|
|
|
|
State
|
69
|
94.52%
|
|
|
|
Zip
|
65
|
89.04%
|
|
|
|
Phone
|
33
|
45.21%
|
|
|
|
Fax
|
13
|
17.81%
|
|
|
|
Email
|
55
|
75.34%
|
|
|
|
Pager/Other
(specify)
|
5
|
6.85%
|
|
|
|
 No Response
|
2
|
2.74%
|
|
|
|
27.
In which geographic area are you located?
|
|
|
San Diego County
|
0
|
0.00%
|
|
|
|
Southern California
|
1
|
1.37%
|
|
|
|
West Coast Time Zone
|
3
|
4.11%
|
|
|
|
Mountain Time Zone
|
1
|
1.37%
|
|
|
|
Central Time Zone
|
24
|
32.88%
|
|
|
|
Eastern Time Zone
|
30
|
41.10%
|
|
|
|
Hawaii, Alaska, Guam, PR, VI
|
0
|
0.00%
|
|
|
|
Other:
|
7
|
9.59%
|
|
|
|
 No Response
|
7
|
9.59%
|
|
|
|
28.
Please use this space for comments, contacts, funding sources and ideas.
|
|
|
 Comments
|
19
|
26.03%
|
|
|
|
 No Response
|
54
|
73.97%
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
This article is from Living For Today, Preparing For Tomorrow. From Parents. To Parents. A Parent's Guide to Living with Duchenne Muscular Dystrophy
This book is dedicated to the parents and guardians who battle against their worries, who must prepare for tomorrow and yet grab hold of today, striving to make today the best day for their children and family.
"Do not worry about tomorrow for tomorrow will worry about itself.
Each day has enough trouble of its own." MATTHEW 6:34 NIV
© Copyright 2001-2002, Rich Clingman, All Rights Reserved
- www.LivingForToday.org/copyright.htm
·
www.LivingForToday.org
·
www.LivingForToday.org
This article may be freely copied and distributed by print or email provided it is copied and distributed in its entirety (including this Dedication & Copyright notice) and is distributed at no cost. Any other use (including publishing on the web) is prohibited without prior written authorization.
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