*I’ll preface this by saying there are several acronyms. I’ll define them at the bottom since I speak fluent acronym in both Army speak and autism speak.
After talking out my meeting with our ACS director here on post, I’ve come to realize just what a disconnect there is about what services are available, and why we families NEED these services.
During our discussion, the ACS director told me that respite care is whatever you need it to be. The perception I got was that it’s whatever you need it to be, but if you want actual respite, like going out to dinner with your husband for a couple of hours, then you should just hire a babysitter because getting your pap smear is what respite is really for. It’s for your doctor appointments and whatever else you need to do that you can’t with a special needs child at home, but not for working on your marriage (ie. dinner with your spouse).
The definition of respite to most special needs parents is NOT yet another doctor appointment, even if it is for themselves. I know I certainly don’t consider having a speculum shoved up my vagina respite. That is really just more medical crap I’m dealing with, just my own this time, and not the children’s. Respite to us is a complete and total break from it all. From all of the acronyms. From all of the therapies and doctors that we deal with on a regular basis. From medication schedules. From sensory diets. You get the idea.
In the military, as it stands now, military children with autism can receive ABA therapy through a benefit extended to them through our healthcare under what is called ECHO. IT IS NOT PART OF THE BASIC MEDICAL BENEFIT. Tricare has deemed that ABA therapy is merely educational in nature by using outdated materials, and thusly has forced we military families with autistic children to use this roundabout way if we want a therapy for our children that helps them. This benefit has a dollar amount cap per month and year. This benefit also includes durable equipment and respite care. This means if you have a child who has other needs that includes equipment, you will have to take away therapy hours to pay for the equipment. That also means if you would like respite, you must take away therapy hours to get a break. A probably very much needed break.
Enter the EFMP respite program. This is fantastic for our military autism families! If you can find a provider, you can not only get some respite hours, but not have to take therapy hours away from your child(ren)! It’s fantastic. IT IS NOT REDUNDANT (looking at you here, IMCOM). This is a very much needed service at ALL of our posts and bases for our military families so our autism families aren’t forced to choose between either reducing ABA therapy hours, or getting a couple of hours to breathe.
Could there be some changes? Absolutely. As I said above, the sentiment is that this program is for things like doctor appointments. When the primary caregiver for child EFMs is an adult EFM, this is where most of the hours are probably going to go. Is that truly respite? No. Don’t we want our military families to be sound? Don’t we want the parents of these special needs children to work on their marriage? A marriage that is already strained by the military? Why can’t the current matrix to determine hours be changed to include an area to reflect how many EFMs live in the household, and maybe add a few hours accordingly? I can tell you that otherwise, some of the allotted hours are already being used for various doctor appointments either for the adult EFM or so they can take one child or the other without dragging all of the children along. Again, NOT respite.
Before you jump all over me, I offer another solution. Equip ALL CDCs to be able to handle special needs children for hourly care. Let us be able to use that facility where we live. Come up with a program other than paying over $1,000/week for summer camp for school aged children at the YS. Not all of us need the summer camp option, but some sort of hourly or per day option would be nice. As it stands now, for school aged children (starting at Kindergarten), it’s all or nothing, and you can’t leave an elementary schooler home alone. Those of us with special needs children cannot even leave older children that people with typically developing children can leave alone. Thus the need for care. The need for QUALIFIED care.
Qualified care because you can’t just leave a special needs child with the teenager next door. Nor can most military families afford someone who is $15/hour to take care of a child who may be non verbal, have a feeding tube, or even in our case, it’s hard to find someone who knows about asthma and food allergies to include how to use an epipen without getting into someone who has a nursing degree and wants paid accordingly.
Now it’s your turn. Tell me what you think respite care is. Do you think there’s a disconnect in people who don’t have special needs children to care for and people who do have special needs children and how they view what respite care is?
*ACS- Army Community Service
ABA- Applied Behavioral Analysis
EFMP- Exceptional Family Member Program
CDC- Child Development Center (daycare on post)
YS- Youth Services (youth programs on post for school aged children)