How
can you take care of your child if something happens to you? Family caregivers need to have a backup plan
in case anything changes with primary caregiver of the child with special
needs.
When
my child had her transplant, we knew we needed help just so we could sleep at
night until she got her sutures out. As
she has autism, we were afraid she wouldn’t leave them alone and there was
infection risk especially with a compromised immune system. All I asked for was a home health aide for 8
hrs. until they were removed. I had
everything in writing in the hospital discharge plan but it was rejected once
we got home. So we realized we needed to
get the agency to validate insurance coverage (not just that they accepted our
insurance) and hours scheduled before going home. In a previous blog, I mentioned we were
eventually successful but lost a week of sleep until it was okayed.
Fast
forward several years and I needed surgery for the first time ever. I applied for both private insurance and
emergency respite. Unfortunately, after
the fact the private insurance sent a denial 3 weeks after my surgery and
emergency respite was approved literally the last half hour of business the day
before my procedure so would have been impossible to set up. The only thing that saved us is 2 days before,
my daughter started having problems and was admitted to the same hospital. My husband was bouncing back and forth
between 2 floors to make sure we were both ok.
But I was actually relieved because I knew my daughter was safe when I
couldn’t take care of her. You know
something’s wrong when you’re glad your child is in the hospital.
So what can families
do?
I
realized that we had to appeal everything.
Just like when she had the transplant and we eventually got
services. I thought I had everything
covered the next time with a doctor’s note from both her and my physician. But the insurance company denied it as
“custodial care.” They seemed to think
it was just care for her autism.
However, she has multiple conditions, medications, and other procedures
we follow. Hopefully there won’t be a
next time but now I know what to do.
Tips for Families
Ø If possible, get a
surgery date with enough lead time to set up help.
Ø Get a doctor’s note
from your child’s physician listing all the care needed, not just that they’ll
need care.
1.
Medications
(this can only be done by a nurse)
2.
Injections
(subcutaneous/intramuscular)
3.
Rescue
medications (e.g. seizures, adrenal insufficiency, or other life threatening
conditions)
4.
Medical
Procedures (tube feeding, catheterization, fistula care, etc.)
5.
Emergency
procedures (e.g. CPR/1st aid trained personnel)
6.
Requirement
for 24 hour care (e.g. condition requiring monitoring, child doesn’t sleep
through the night, etc.)
7.
Monitoring
(e.g. vital signs)
Ø Get a doctor’s note
from your physician with activity restrictions and expected duration. You may wish to ask for an extra day or two
as most people resuming daily activities do not do things like lifting,
diapering, pushing a wheelchair, and bathing etc. for others.
One
of the biggest worries family caregivers have is what will happen to their
loved one if they can’t care for them.
There are ways to get backup plans in place and people who can help you
do that (see resources below.
Resources
The
Arc
Caregiver
Action Network-resources
Family
Voices/Family-to-Family Health Information Centers
Title
V of the Maternal/Child Health Bureau
Remain
Hopeful,
Lauren
Lauren
Agoratus is a parent/advocate who works for the Statewide Parent Advocacy
Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that
works to “keep families at the center of
children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers
across the lifespan for the Caregiver Action Network (formerly National Family
Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork
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