Thursday, September 1, 2011

What I Learned on Summer "Vacation" - healthcare notes

“Didja miss me?”  I’ve missed the last two blogs because my daughter had her kidney transplant!  Despite having a fantastic hospital and TRIPLE (private, Medicare, Medicaid) insurance, I actually took notes when we hit snags in the process to hopefully help other parents down the road.  Lessons learned:
Night Shift… & general child stress
   Hospitals and insurance companies will assume a child with a developmental disability can be left unsupervised and sleeps through the night.  My child who is also autistic, had 24 staples, multiple IVs, and central cardiac line, and foley catheter and it was originally thought she could be checked once an hour-until they brought someone in because we wouldn’t leave… and they were believers the next morning because she was up all night even with Benedryl and pain killers.  Lesson:  If you child has special needs, they may require extra supervision, especially overnight.   NOTE:  Hospitals also usually have “Child Life” departments which will help your child if they’re scared about a procedure, especially if they have special needs.  They’ll come in with puppets or dolls and show the child what to expect.
   We stayed an extra day to make sure we had home nursing (in writing) so we could sleep at night but when we got home the agency said it was denied by all insurance plans!   We appealed and won, only had a few hours sleep each night for almost a week until it went through.  Lesson:  Even if it’s in the discharge plan, set up the actual nursing coverage with the agency before going home.  Also, appeal if you’re told no so make sure you get the denial in writing, not just over the phone.  

   Make sure you have as much in place as possible and a written discharge plan with care instructions.  Besides home nursing and homebound instruction (see below), there are practical things you can do.  For example, my daughter was on 10-20 medications 4 times a day, plus we needed to be isolated 6 weeks, so we set up pharmacy home delivery.  Make sure you know how to give the medications and if there are any side effects.  If you child was already on medication, ask which if any, to continue besides the new ones and if there is anything (e.g. food) that would affect it.   We also used an online tool to create a meds.  chart (which we also now copy for doctor visits), a pill organizer, and a checklist to fill it.  
   Other practical considerations are things like if the child can have a bath or shower, if not what to do (no rinse soap or shampoo), and if so how to do it (how do you wash around stitches?)  Make sure your child has no problems with the usual bodily functions such as elimination, eating, etc. before leaving the hospital.  While you’re at it, ask if your child’s diet needs to change.  Find out if there’s anything they’d like you to keep track of at home such as blood pressure, weight, temperature, measuring intake/output, etc. and that you know how to do this and have accurate equipment.  For example, we got a digital scale and asked the pharmacist for help with a blood pressure cuff, quick thermometer like the one the nurses used, etc.  and actually got everything before we left the hospital.

   Kidney transplant patients get put on Medicare Part A (hospital) and B (clinic, immunosuppressive drugs).  If there is other private insurance for the first 30 mos., Medicare is secondary, then primary last 6 months, then discontinued.  If patient also has Medicaid, they are autoassigned to a Medicare Part D prescription plan and only find out when they get a card in the mail.  Parents must call Medicare to opt out of Part D and also disenroll by calling the plan (be prepared to prove you are the legal decision-maker because I couldn’t believe I had to put a developmentally disabled teen on the phone so to say “It’s ok to talk to Mommy” so then faxed them guardianship.  NOTE:  Medicare, SSI, Medicare Part D plan, Medicare Coordination of Benefits all need this separately because the systems don’t link).  Be careful to check with the Human Resources Dept. of your employer because Part D could void private prescription and medical coverage.  Also, if you have Part D, Medicaid will put your child into a “limited benefit pharmacy wraparound program” which in our state only covers benzodiazepines, barbiturates, and OTC (over the counter) meds.  like vitamins, aspirin, etc.  I found that the Medicare national number (open 24 hrs.) and SHIP (State Health Insurance Program) Medicare counselors were very helpful.

   If your state is switching from traditional “fee for service” Medicaid to managed care, make sure you don’t get “autoassigned” to an HMO.  You need to check if each doctor, not just practice or hospital, is listed either the HMO.  If your child gets care outside of your state of residence, you may also need to get a Medicaid “out of state authorization”.  Also, pharmacies aren’t included in the out of state authorization so stay local for meds.  And even pharmacies that take Medicaid fee-for-service, may not accept Medicaid HMOs.  

-“Coordination of Benefits”
   Doctors, hospitals, and pharmacies have a hard time billing private, then Medicare, then Medicaid.  Also there was massive confusion in our case because our private insurance has the same name as the Medicaid HMO, and our private prescription plan has the same name as a Medicare Part D prescription plan!  Usually private insurance is first, Medicare second, and Medicaid is always last.  Don’t pay bills until you’ve checked that all insurance was billed first.

Home Instruction
   Besides a doctor’s note, you may need your doctor to fill out additional paperwork.  Parents may also be asked to sign a HIPAA (health information privacy) release form so you need to decide if you want the school to have access to all of your child’s medical records or just some, if any, and for what time period.  Also it may take some time for the school to set up home instruction so give them as much notice as possible beforehand in writing, especially if the surgery is planned and you know the dates you’ll need.  If you have concerns setting up home instruction, contact your Parent Training and Information Center.

Medication tools

National Medicare Office  or 24 hr. hotline (800)633-4227

SHIP (State Health Insurance Assistance Program) Counselors for Medicare

Centers for Medicaid/Medicare “Who Pays First” guide on insurance (private/Medicaid/Medicare)

Parent Training and Information Centers (special education)

Lastly, figure out how to get all the balloons home in the car!         
Remain Hopeful,   Lauren


  1. Wow. My heart goes out to you and your daughter. I know the nightmare I went through when my little guy was in 2 NICUs and dealing with insurance. And I remember fighting insurance and prescription battles where they asked to speak to my son! And they were shocked when I said they couldn't because he was 2 mos. old and on oxygen. At least I could speak for him & it wasn't questioned too much. God bless you for the insightful info & your willingness to share. May your daughter be blessed in her recovery and may you get some sleep.

  2. Thanks! Steph's our "miracle baby"-spent her 1st 2 weeks in NICU on a respirator, heart monitor, IV, and feeding tube-not initially expected to survive-but at least noone asked to speak to her then! Glad it worked out for "baby bear"! Thanks- I wanted to share so hopefully some other parents won't have to go through this!

  3. This is practical, helpful information. Thank you for sharing it.
    We had wonderful care when our 11-year old daughter was in the hospital for cancer treatment, but we knew NOTHING when we went in, and a LOT when we came out. Even with the wonderful care (& by grace, fabulous insurance from my husband's employer) there were many lessons to learn. The absolute necessity of a medical advocate for every patient (usually a parent, if the patient is a child) was brought home to me during the 10 months of her treatment, surgery and recovery. And when she was diagnosed as terminal, the absolute necessity of hospice care, and the gift of hospice care in our home, was learned.
    Your wisdom, gained from your experience, will bless many other families. I am working on a book and a video in order to share what we learned with medical staff and other families. Blessings to you!

  4. P.S. My blog is

  5. Thank you so much for sharing that. Also please email me at when your book/video are out!