Tuesday, April 1, 2014

When You’re “Out of Commission”

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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.
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 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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