Developmental Progress Binders

You will receive initial copies of evaluations and questionaires, pamphlets, appointment slips, possibly medication information, referrals, visit reports, copies of communications between the providers, privacy paperwork, consents etc and more. You will have to learn which to keep nearby, which to file safely at home and which to toss.

You will also probably do A LOT of online searching to help you out in the beginning and you may print off pages that you feel are important or that you would like to discuss with a provider.

The above only covers the medical side of the equation! Then the school or early intervention program will do their thing! There will be ARD paperwork, individual evals from every professional on the interdisciplinary team, goals set by every pro, expectations and progress reports pertaining specifically to the child's developmental goals.

There will be times that you do not expect to need some of these things, yet you will, there will be times when you feel that the provider you are speaking to should want some of these things, yet they won't. If you have the binder with you, there may also be times where you encounter a professional who disagrees with the diagnosis- let them have a look at it!

There will be SO much paper. Oh so very much paper. Figuring out what to put where can be frustrating for those of us not naturally gifted with supreme organizational skills. As a general rule... copies of anything "FORMAL" should always be kept in the binder until a more recent one becomes available. If you can, (space wise) it is a good idea to keep 2 annual formal evals from each provider together (newest on top) so that if you get a substitute or new provider they will be able to see what type of progress your child has made.

Session notes should be kept in the binder if they contain pertinent information such as "the child did not respond to this method, they did respond to that method" or if the therapist noted any behaviors that were alarming or unusual for your child- this way if they recur you will have the documentation on hand to get a referral to the appropriate provider for any new problems.

Any emergency room discharge paperwork should be kept in the binder for 30 days or so if it was a minor problem (therapists may ask to see it to verify it was minor) if it was serious, keep one copy in there for a few months- sometimes a serious injury (even if non-life threatening) can trigger a regression in a child with a developmental disability. If this occurs with your child it is important that the providers be made aware that stressful events have a more profound impact on your child than most and what type of stress it was. Once it is no longer needed in the binder it can be filed.

There will be too many papers to keep in the binder- you will need either a file cabinet or a file box for the rest. In the beginning, it is better to keep too much in the binder since you will not yet be familiar with what your providers want from you- it is EXTREMELY important that you organize it well because they will be frustrated at rifling through chaos!

You should bring the binder to every doctor's appointment (every specialty). You will also need it when you look at a new school (so that they can better answer questions about what special education services they can offer your child), every ARD meeting and any other formal meeting at school- also may come in handy at parent teacher conferences. You should also have it with you every time your child has any therapy evaluations or nears the end of a referral cycle- any time you call a provider on the phone for quick reference, and if you are switching any services.

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If you are a military family... KEEP a copy of your EFMP paperwork (educational AND medical in the binder as well as a copy of each in the file cabinet. You will need the binder during multiple stages of PCSing (possibly including housing if applying for exception to policy for bedroom number, paint color for sensory issues or a fence for elopement risk) and every time you go to an MTF (even if just to pick something up or schedule something). Be sure to ask any MTF you go to for a primary care provider in their Continuity Clinic and if you are told no, ask for the OIC and explain your child's situation- there is NO requirement that says they must be referred to continuity, any documented chronic condition or EFMP status qualifies them. Be sure to keep the phone numbers for your new CAMO and continuity (often different numbers) on the front page in your binder.

Military families should keep at least one ARD packet from each school in the binder to help the new school get everything in place more easily even if they start services immediately, they must compile a file, request records etc which is lots of work- anything that you can do to help them speed that process up is usually appreciated!

If you and your child frequently travel OR if you plan to travel for more than a few days, you may need it. If you plan to take your child on an airplane- you may need it! Some airlines are quick to ask parents to disembark with their children if their child is behaving in a manner that they find "unsettling". Having evidence that this behavior is a disability, not a threat can help keep you on schedule! Sometimes they refuse to allow you on even having seen the documentation, in that situation it may prove to be even more useful if you pursued it via the media or in court.

If you are traveling long distances by car, it is a good idea to keep a travel binder with you in case of emergency, this is the type of information that is extremely important to have if one or both parents were injured or otherwise unable to notify the hospital of the disability- most emergency medical personnel are NOT trained to diagnose developmental disabilities and some symptoms of these disabilities can mimic head injuries or drug overdose. It is also important that emergency personnel are aware of any medications (including herbal/ natural and supplements) when treating your child.

Travel binders contain a summary of the most pertinent information.

*A copy of the diagnosis, a list of evals performed and the dates (but not the copies of the evals themselves)

*Medication list including dosage and frequency, reason AND any herbals or supplements.

*Allergy list including type and severity of reaction

*If the child is in school, a copy of the page from their ARD or IEP paperwork stating their diagnosis and that they are enrolled in the special education program.

*Emergency contact page- as many RELIABLE emergency contacts as you can think of- be sure to update this section regularly!

*Provider contact page

*Behavioral concerns page- is the child usually violent, withdrawn, defiant, depressed etc- please make a note if NONE of these problems are present so that emergency providers will be aware that this is unusual if the child displays any of these while in their care.

*** If your child has a Childsafe i.d. page (with photo, basic info and fingerprints) you should bring a copy in the travel binder! When making a copy- a NEW set of fingerprints should be obtained for the 2nd copy in case your copier/printer does not have the capability...