Complex Care – An Administrative Headache!

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And then another specialist is added to your child’s ‘team’ and sends you a 10+ page packet of paperwork to complete, which re-hashes all the information that you have provided to every other provider before. You arrive at the appointment and spend a large amount of time re-confirming and explaining everything in the paperwork. The specialist asks you to remember dates of procedures and tests, which seem lost in the ocean of your child’s countless visits. Don’t forget all the HIPAA & other forms you need to sign so that this information can be shared with every other provider involved.

Sound familiar?

Complex care can become an administrative nightmare so we’re here to share some tips how to make it more effective for you & your family.

Most specialists need to collect certain information so that they can complete the paperwork required for insurance companies. Many specialists are overworked and may not have the bandwidth to read through the volumes of reports from all the other providers on the ‘team’ and over the years.

We’ve developed this Medical Summary Template as a cliff notes version that you can create and maintain for your child. It will give the providers everything they need so that you can spend more time on your questions and child’s specific needs.

1) Basic information

a. Name

b. Contact information – Email/Phone

c. Date of Birth – Please note that full date of birth is Personally Identifiable Information (PII) data so do not broadly distribute this information on social medial or anywhere that does not effectively protect your family’s data, which can be stolen/result in identify theft - https://www.dol.gov/general/ppii

d. Diagnosis

2) Prenatal & Birth History

3) Medications & Diet

4) Equipment

5) Major Findings

6) Hospitalizations

7) Therapy schedule

8) Medical exams/procedures summary

Complex care usually involves medical, educational, and administrative individuals from various organizations and agencies. The list continues to evolve over time as your child transitions and ages from one program to the next.

It is helpful to maintain a contact list of everyone on the team for your own benefit and also for the other providers on the ‘team’.

Here is a Sample Contact Sheet that you can use to for your child’s specialist contacts.

Come prepared with questions! This appointment should be your time to discuss your child’s needs and options available. You are your child’s best advocate so feel comfortable to push back if you feel that something may not be in the best interest of your child or ask for a second opinion. Many providers may not be as knowledgeable about ASXL syndromes so share with them some of the latest publications such as the recent article in GeneReviews: https://www.arrefoundation.org/research-spotlight/

Creating a OneDrive, DropBox, or other type of shared folder can be a good way to post progress and specialist reports with your team. Choose the ones that are recent (within the last year) and most relevant (e.g. neurology, genetics) for your providers to read.

Next time you arrive at one of these appointments, bring these reference documents with you and skip the doctor office’s paperwork.

- by Laura Badmaev

Have more tips for Getting Organized? Please share them with AЯRE!

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