Monday, July 23, 2012

Paperwork Mountain

“...I am completely worn out!  How can I last?" (Proverbs 30:1, CEV)

Of all the jobs that weigh us down as parents raising children with special needs, I would have to say that the seemingly endless filling-out of paperwork has to be one of our more daunting tasks.  There is the government paperwork to fill out if your child is receiving Medicaid or Katie Beckett Program assistance.  This set runs at least 14 pages per year for my son.  If you are enrolled in any help from other medical assistance organizations, that is a whole different set of paperwork, which easily runs 4-6 pages for most.  The extra medical forms for school seem to be increasing in our district and may well be in yours.  This year I will fill out 5 sets of forms with no less than 2 pages each for both my son and my youngest daughter.  If your child wants to go to camp, you can count on another 8-12 pages along with a required medical exam and updated vaccination records.  (Oh, copies of that are needed for school as well!)  If you are fortunate enough to find a church with an inclusion ministry, there will be at least 4 pages of forms to complete, and you may be asked to share a copy of your child's IEP or 504 Plan.  And organizations like the one I lead most certainly request 4-6 pages of paperwork in order to allow participation in evening respite programs.

I am sure that I am leaving other required paperwork out of this litany, but what I have is more than enough to take anyone's breath away.  Is it any wonder parents like us frequently live in a continual state of overwhelm?  Just managing the disorder or diagnosis is more than enough without the part-time job of endlessly filling out forms.

While it is a necessary part of our jobs as parents, the Lord hears our cries for help and offers us small blessings through a variety of tools.  For starters, if you are not keeping your child's medical information updated and stored on a USB drive already, I urge you to use one of your choosing as soon as possible.  There are a wide variety of medical alert drives available in both dog tag or wrist band styles to choose from. also provides reviews, allowing buyers to weigh the pros and cons of each devise to make the wisest choice for their own personal situation.

Another type of tool you may find incredibly helpful is a medical information binder such as My Medical Assistant or Green Pear Health's Medical Records Organizer.  This type of system will allow you to keep everything in one place for your entire family, which is particularly helpful if you have more than one child with a special need like our family does.  Immunizations, visits to specialists, allergies, and even medical bills for tax or reimbursement purposes can all be centrally accessed when using such a system.

If your state has such a program available, a Patient At Risk Program, such as Wisconsin is currently piloting, can be a real life saver.  Allowing professionals to "break the seal" and access your child's medical information when you cannot be reached in an emergency is, in my estimation, a must for kids with special needs.   If you are uncertain to whether or not your state has such a program, merely contact a children's hospital in your area.  They are sure to know.

Overwhelmed No More by veteran special needs mom, Joan Celebi, has become a favorite recommendation of mine over the years as well.  While you must make the time to get through Joan's workshop-in-a-book, it is time well spent that will eventually save you time in the long run.  After all, part of that immense stress that comes from completing reams and reams of paperwork is due to the fact that there are already so many demands on our complex lives.

Another personal tip I recommend is the simple task of photo-copying everything you fill out.  This helps circumvent the need to strain our brains and thumb through piles of papers to uncover facts that we already used on a previous set of forms.  I even keep extra copies of our Medicaid and insurance cards scanned in to my computer.  

Filling out forms incrementally over a period of time can help conquer this large task as well.  Filling out 14 pages in one day can intimidate us into procrastination.  But we can surely fill out 2 pages today, and perhaps another 2 pages a few days from now.  This may help scale the job down into bite-sized pieces that lessen stress.

Ultimately, rest and trust in God.  When He says in Proverbs 3:5-6 (NASB), "Trust in the Lord with all your heart, And do not lean on your own understanding.  In all your ways acknowledge Him, And He will make your paths straight," He means ALL your ways!  Nothing is too big or too small for our God -- even the unpleasant task of paperwork for our children.  How blessed we are that He cares and sends us help!

PRAY:  Lord, if there is one thing that weighs me down, it is all of the paperwork involved in raising this child that you blessed me with.  I can't do it without Your help!  Fill me with your peace and discernment to accomplish this task.

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