A few months ago, my nephew was diagnosed with autism. That makes 4/5 children in my familywith ‘psychiatric disorders diagnosed during childhood’.In talking with her this morning, I was horrified to hear how little help her son was getting – she’s not even getting “the basics” let alone any additional help.
She’s simply not getting the services available to help her son. I think this occurs more often then I realize, so I wanted to talk about it today in case anyone here needs more support for their child.
It’s a lot of work. Let us settle that right now. You have to advocate, be persistent and prepared. That doesn’t equate to begin difficult however, as most people have a coordinator of some type already working with their family.
If you do not have a coordinator, case manager or equivalent, then the first step is to obtain one. If you’re unsure how to do this, it will depend upon where you live, but you’re looking for an agency, organization or branch of government that deals with the special needs/disability population.
If you have a coordinator then call them. Today. Have a pad and paper ready and ask them to list any and all services or programs you might qualify for (make sure you say ‘might’ or you’ll get a shorter list!). Then ask what you have to do in order to obtain them. Since you are unlikely to receive everything you qualify for, you should apply for as many as possible.
You’llcomplete paperwork. Lots and lots of it. Do yourself a favor and make 25 copies of each document you must submit instead of the 1-2 needed. You’ll appreciate having them available time and time again.
Evaluations, diagnosis, IEP, progress reports, and numerous documents may be needed, so pull these together once and for all. Remember, submitting information quickly, and in-full, will speed up the determination process.
The higher-ups may determine your child is not eligible. It happens even though, in many cases, it seems eligibility requirements have been met. In this situation, your next step is to ask what the grievance or dispute procedure is. More likely then not, you’ll find an appeal process letting you dispute the decision, so take advantage of the entire process (not just application process).
Simultaneously, you can search for supports and programs in the community and private sectors. The range of possibilities is wide, so this can take some time. All you need to do is find one.
Ask your service coordinator, teachers, therapists and doctors, if they know of additional services or programs for your child. There will be opportunities through Universities, community agencies and more.
Once you’ve located a program or service that suits your needs, ask that entity to recommend additional resources – they will know many more, since this is their ‘field’. Networking and referrals work all thetime and in every situation, so network to find services and save time.
Don’t overlook your school. We often assume the schools, or any agency for that matter, would inform us of programs or services available. In reality there are many reasons information might not reach parents. A simple phone call to the guidance counselor, administrator or CSE chairperson can result in finding support. There is no investment required; only a phone call, so give it a shot.
Finding and allocating services never seems to end and, in some ways, it does not. Our children will change and progress, but in many cases this simply translates into needing different supports, not foregoing them. There are many factors making this a bumpy road sometimes (staff turn-over, budget cuts, lack of providers or funding to name a few), so it takes tenacity.
Be sure to take advantage of your coordinator also; they typically help find services outside of their agency or funding source. Ask them to help look in the community and private sector on your behalf.
Good Luck!
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