Transitioning from Pediatric into Adult care . . . Any advice?

Monica.T

We are about to be thrown into utter chaos!

Charlie has reached the age where we are required to transition from pediatric to adult care. All his doctors, specialists and therapists (that know him, know his history and his needs) are pediatric physicians. Now we have to begin the nightmare of finding all new doctors (for adult patients).

So far this is what I'm being told I have to do. Get POA & M-PoA, check insurance restrictions and coverage and find new doctors.

Step #1 I am required to obtain a Power of Attorney and Medical Power of Attorney. 

Step #2 Spend hours on the phone with his Insurance trying to figure out what will and won't be covered now.

Step #3 Have find him a new Primary Care Doctor, Orthopedic MD, Neurologists, Urologist, Cardiologist, GI specialist and new Therapists; along with a new Eye doctor and Dentist. - that will take his Insurance and accept special needs, disabled patients.    { Hope to find local doctors but not counting on it. }

Any suggestions or helpful advice on how to begin to navigate this nightmare?

I'm really dreading this and am worried about new doctors not understanding (or caring about) Charlie's medical, physical, and personal needs.

Thanks

ambercollie

@Monica.T How is the transition going??
Have you found new Dr's?
I remember going through that with Zack

prc_donnal

Hello!
My name is Donna. I am an Information Specialist with the Paralysis Resource Center (PRC).
We have factsheets on physiatrists (physical medicine specialists). Included in the information is a link to their website where you can search for a physiatrist in your area; we also have a doctor locator by specialty as well as a document on special needs planning.

I would be happy to send these to you. Please contact me: [email protected] or 800 539-7309 x5911.

I look forward to hearing from you!
Sincerely,
Donna

Monica.T

ambercollie So far we are still searching for doctors in or near our area that take patients with special needs and disabilities - luckily his pediatric doctors are still seeing him but on a "need only" basis ...... We did manage to find an adult Neurologist near by and Charlie has first visit scheduled to see her. This is turning out to be quite a challenge for us.  

Monica.T

prc_donnal Thank you ever so much! Sending you an email mail

ambercollie

@Monica.T one step at a time you will transfer things over slowly and it will get done. You have done hard things before and this won't be the last. Hang in there it will all get done you will build a new adult medical team for Charlie one appt at a time. Your doing great!!

Monica.T

Been a while since I've posted - this is still a nightmare! Got the power of attorney but so far have not found a single adult doctor willing to take Charlie as a patient (due to his "complicated medical conditions") so we are still with his peds doctors but insurance is having a fit over it, and Charlie's urologist relocated even further away, now it's over 3  1/2 hours away.

I have also recently learned something very frustrating - due to some health problems of my own we have recently needed in home nursing care for Charlie but have been unable to get it because he if in what the insurance called the "gap ages" age 18, 19 and 20 ..... to old for children's services (over 18) but not yet old enough for adult services (21 and over) - Charlie is 19 ..... even though he received his SCI at age 16, we never needed in home nurses or caregivers, I've always been his caregiver .... but because he is in the "gap" for programs, services or insurance coverage I can't get him any in-home nursing care ... this is unacceptable, how did such a thing ever even happen - there should be no denial of services just because the person is in-between child and adult age. 

ambercollie

@Monica.T Wow! that is unacceptable!! Can I ask (maybe again?) what insurance Charlie has and what state you live in?