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A Maze of Agencies: Where to Start?

by Mary Mazzoni on June 5, 2011

Ever been to an agency fair ?  The room is filled with display tables, piled high with brightly colored brochures.  Friendly people hand out literature and speak a strange new language.  You leave with a bagful of stuff, more confused than when you arrived.  Sigh.

Or perhaps at your child’s IEP meeting, you’ve been handed an agency directory.  You’re urged to research agency services and apply for funding as soon as possible.  Once home, you look at the list and don’t know where to start.  Ugh!

Educators and agency staff mean well.  They want to inform families.  But they often don’t realize that this maze of agencies, each with it’s own “eligibility criteria”, “intake process”, and alphabet-soup lingo, is a foreign land to families.  Where do we even start?

Don’t Go It Alone

It can be intimidating to enter foreign territory where we don’t know the lay of the land or speak the native language.  Best to navigate this new turf with a competent guide who has our child’s best interest at heart.  You can find such a guide – for free- at your local Center for Independent Living. (CIL).

What’s A Center for Independent Living (CIL)?

Sounds like a place where people live, right?  But it’s not.

A Center for Independent Living (CIL) is a place where people of any age who have any type of disability can find  - for free – information, advocacy and mentoring as they build for themselves a life of their own choosing.

There are CILs all over the country, funded by federal, state and local dollars.  Most CIL staff are persons with disabilities. They know the lay of the land.  But they don’t tell people what to do.  Rather, they are allies, mentors, advocates and seasoned fellow travelers.

CIL staff can inform you and your child about funding sources that may apply to your situation, help you navigate through agency application processes, and answer all sorts of questions along the way.

Trust me.  Your local CIL is a good place to start.

Where Do I Find My Local CIL?

Local CILs are private, non-profit agencies.  Often, a CIL doesn’t have the words “Center for Independent Living” in it’s title. (For example, our local CIL is called “Abilities in Motion” ).  A good way to find your local CIL is to click here .  You can then click on your state, to search for the CIL nearest you.

When Should I Contact My Local CIL?

Short answer?  Now.

The sooner you and your child connect with your local CIL, the sooner you’ll connect with people who can encourage you and inform you about valuable resources and supports.  CILs serve people of every age who have any type of disability.

Learning To Speak for Oneself

“Nothing about me without me” is a CIL motto.

This is your child’s life. CIL staff will encourage your child to express needs and wants, plan ways to achieve goals, and self-advocate along the way.  As parents, we want our children to grow to become happy, self-determined adults.  The local CIL is an invaluable ally on the journey.

Have you and your child connected with your local CIL?    Have you begun to navigate the agency maze?  Any advice or comments to share?

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