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 |
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