Thursday, September 16, 2010

Creating a Special Needs Binder

Jennifer Johnson

As a parent of a child with both significant medical problems as well as a diagnosis of autism, I have tried to learn things and develop systems along the way to help me in terms of accessing care for my child and getting quality care.  One of the tools that I developed for myself (and then later learned was available online in other forms) is a medical/special needs binder.  I take it to all appointments for my son -- the pediatrician, speech therapist, school psychologist, etc.

Special Needs Binder: Why and How

Whether your child has medical problems on top of ASD or not, you will unfortunately spend a lot of time in the offices of doctors, psychologists, school officials, etc. Each of them is likely to ask you many of the same questions again, and some will ask you the same things multiple times. My son has developed a phobia of doctors and also is not patient when I am attending to other people. So, I have found it extremely helpful to type up a handful of different documents and have them in a binder I take to all appointments.

These documents help for several reasons: if you have a child who cannot sit while you are interviewed, if there are things you don’t want to say in front of your child, if you want to make sure that you have been thorough in the midst of a potential tantrum, and so that you don’t feel that you are having to recount your story one more time! Here are the things I always have on hand:
  • A document of bullet points of my son’s medical history, including diagnoses (date, who made it), medications (who prescribed, date started, dose), surgeries (dates), hospitalizations (dates), etc.
  • Brief developmental status: age equivalent levels for each area (gross motor, fine motor, sensory, social/emotional, speech, etc); chronological ages he reached developmental milestones (You can find a list of developmental milestones online and then put in the age your child reached each one.  I find this one especially helpful when I am overwhelmed with the idea of how far behind we are and don’t want to recount it all again. Plus, it saves so much time in meetings).  
  • List of names and contact info for all medical providers.
  • List of names and contact info for all therapy providers (ABA, speech, PT, OT, etc), number of hours of each service per week, who is funding each service. 
  • Family history form (you can find forms online and fill in your family history info and print out).
If your child has had a number of assessments, it might be helpful to make up an excel spreadsheet with the date of each evaluation, who did it, the measures they used (e.g. WISC, HELP, etc), and a very brief summary of results (e.g. 12 month cognitive level, 16 month gross motor level, 14 months social/emotional, etc.)

We used to have a daily log sheet to keep track of food/liquid intake when we were trying to wean my son off of using a NG tube. Every doctor wanted to know how many ounces we got in, and I was so sleep deprived that I couldn’t count on my own memory. So, the daily log sheet was really helpful. I know other families who have done something similar for other medical issues, like tracking occurrences of seizures and listing the day, time, situation, duration, and how they treated it. 

This may seem like a lot of work, and it is. I started out with a few forms and reports and have built this up over time as my son’s needs and records have changed. I try to think about it in terms of work and time saved, in typing up a list of answers to questions now so that I don’t have to sit and answer them five more times in someone’s office while wondering how much of it my son understands. I also find that there are times when I am much more emotional about this journey than others, and being able to hand someone a list of the ages my son reached certain milestones, rather than go over it verbally, saves me tears and heartache. 

Finding forms/documents

You can find a list of printable forms: (personal info, medical history, family history, diet, growth chart, medical needs, medications, appointments, insurance, care plan, provider list, hospitalizations, immunizations, equipment, rehab/therapy, school) at:

http://www.medicalhomeinfo.org/for_families/care_notebook

I didn’t know these were even available at first and made my own, and other sources may be available.  Now, I try to search for a document that is similar to what I need, and adapt it for my purposes. 

Suggested Materials
  • Heavy duty binder 3-4” (preferably with insert on cover, make a page with your child’s name and your contact info in case the binder is lost). You may be shocked at the cost of the super heavy duty binders, as I was. I purchased a standard binder first, and the cover and the rings broke within a few months because it gets used often and travels. So, I bit the bullet and bought the $15-20 version, and I have had it for 2 years. 
  • Three-hole punch.
  • Dividers with tabs. Label sections in the way that works best for you and your child’s needs -- I have sections for contact info for: 
    • All medical/therapy providers
    • Medical reports
    • Developmental reports
    • Lab results
    • Growth chart
    • Immunization records
    • Insurance numbers (ID#, phone numbers, etc)
    • Hospital discharge summaries/surgical reports
    • Background (includes family history, brief medical/developmental summary)
    • Questions (I have a sheet for each specialist and write in questions as I think of them so they are handy for the next visit).
  • Plastic sheet protectors. Use these to protect sheets you will be taking in and out a lot, like insurance information. I also put blank paper in them and tape all the business cards of doctors and providers on them so I always have the contact info -- I tried to type up all the business card info at first, but it was too overwhelming. So, now I have them in plastic taped to paper. 
  • A zippered bag that attaches to the binder rings, for storing pens, pencils, Post-Its, and Reinforcers.
  • Post-It notes. I use them to label documents during the doctor office and other meetings, then  stick those documents in the front pocket of the binder. That way I don’t forget what the documents are and what I need to do with them.
  • If you can manage it, an all-in-one copy, fax, and scanner (mine was $50 and is worth its weight in gold).

Using the Binder

When I make an appointment for my son, I always ask if they have paperwork that needs to be completed. They usually answer with the “come in 15 minutes before your appointment, and we will have you do it then,” to which I reply that I have to do it in advance and bring it in or my son will go ballistic. I am usually able to explain that he is afraid of doctors and does better when I can attend to him. Getting their forms helps me to prepare for the meeting, fill them out, and I can also ask them for permission to fax over some of my forms with background info that hopefully the provider will review in advance.

It is also very helpful to remind the office when you arrive that you sent in their paperwork and some background info for the doctor/specialist to review so that hopefully they read them before they come into the room if they haven’t already done so. If they don’t, when they start asking questions that are answered by your forms, you can continue to refer them to those forms. Sometimes it works and sometimes it doesn’t. If they “lost” your forms, you have the originals in your binder and can whip them out and ask them to make a copy.

Most of the time, specialists are grateful that you are thorough and have provided them written details.  If they are not, this may be helpful in your evaluation of whether or not you want to work with this person. I often ask if they would like me to email the documents as well because sometimes they appreciate being able to cut and paste your info when they are writing their reports.

Some people may feel that the specialist should do all the work, but I look at it as a way of avoiding having more errors in my son’s reports. Before I started using the special needs binder in this way, we would spend an entire office visit just going through birth history and medical problems and not ever get to the developmental issues I wanted to address -- and then we would have to come back and have another visit.  If the binder works, the result is that the provider/specialist knows my son's history, and we get to the current issues much more quickly and the whole visit is faster and smoother.

Providers often ask to have families sign release of information forms so that they can request records from your providers. I typically just pull out the relevant reports and ask them to make a copy of them.  I do this for a couple of reasons:
  1. To ensure they have all the info they need to understand my son, and
  2. I don’t always want certain professionals to be able to access my son’s other records.  
I think this is particularly important with agencies who fund services. This leaves me in control of who gets what. I do sign releases for professionals with whom I feel very comfortable and who I want to be able to speak candidly with each other. 

Always get the provider’s business card and add that to your contact info in your binder. Even if you never plan to see them again, if someone else asks you who you saw for evaluation “X,” you will be able to find the info. This card also gives you the provider's contact info for use for health care reimbursement filing and a fax number to use to contact them if they are not easy to reach by phone and will not let you email them. Many providers are refusing to use email because of privacy concerns. One way I deal with this is to say that I will not use my son’s name or identifying information but will only email requests such as, “Can you please remind me who you recommended regarding assessment of gross motor needs?” 

When I am at the office, I take all the forms and documents that the provider gives me and put them in the front pocket of the binder. When I get home, I:
  • Go through all the documents the provider gave me.
  • Toss what I know I will never need (like the 1000th copy of my HIPAA rights).
  • Label the things I want to keep but don’t have time to deal with right now (ex. “file in developmental reports").
  • Make a list of notes and questions for that provider and other providers that came out of that visit.  
This is my To Do list for when I have a spare minute.

When I get reports in the mail, I think about any other providers who I would want to have that info and use my fabulous fax machine to send it out immediately. I then three hole punch and file in chronological order in the appropriate section: PT reports in developmental reports, blood tests in lab reports, report from the doctor visits in medical reports, etc.

I am passing along the approaches that have been working for me. I hope they are helpful.