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BY Valerie

For Special Needs Advocates: A Guide On Reaching Out To Politicians

It’s that time of year again when many states begin a new legislative session.  Some states, like Indiana, only have a part-time legislature which meets three to four months a year, while some states are in session year round. Regardless, things seem to heat up in the beginning of the year.

If you are considering getting involved in the legislative process as an advocate for people with disabilities I thought I would share nine tips from my own experience in hopes of helping you have a smoother ride.

1. Get To Know Your State Representative And Senator

The first thing you should do is get to know your State Representative and Senator – preferably before the session starts.

Call and make an appointment with their assistant and come prepared if they can meet with you.  Dress appropriately and don’t expect more than a few minutes of their time.  By putting your face and your voice in front of them (either in person or hand written) over a period of time, it will help you in the future.

Most constituents do not get the opportunity or see no reason to establish a relationship with their reps before they really need their help; this is a mistake. If you want to pursue this arena of advocacy, you must do the upfront work.  Meet with candidates.  Support their campaigns either financially, through volunteerism or both.  Ultimately, nothing is as important to your success as having your own advocate in the legislature.

2. The Game Of Politics

If it seems too good to be true, it probably is. Legislators or members of the Governor’s staff would  routinely tell me they would do something knowing it would never happen. Keep in mind, the political world is like a checker game.  Every move has a motive and desired outcome. When your concerns are perceived to no longer be important to the process, you are out of the game.  Try not to take it personally.

On a side note, I think some legislators use this tool to make their opposing political party look bad.  They offer something knowing up front that it is not feasible and then blame others when it doesn’t happen. Keep your eyes open and be realistic about your goals and you won’t get burned.

3. Work Both Sides Of The Aisle

Do not assume one political party will help you more than the other. Instead, utilize your own representative regardless of political party affiliation.  Surprisingly, when I was working so hard to maintain our state’s early intervention program, the party which came to my rescue was not the party you would think.  It was my Senator who pushed the bill through and got it signed.  Oh, and the 10,000 phone calls to the Statehouse didn’t hurt either.

4. Protect Your Supporters

Do not let other groups hijack your supporters.  This happens a lot actually. Our group became very powerful very quickly so other groups would send out these blanket emails asking our families to send an email to their respective representative to stop House Bill 103.  They would add that it was a bill which would take services away from children.  So the parents would get up in arms without looking into the actual bill itself and find out they just pushed to have smoking laws changed.  We all know the saying, “Don’t assume anything…. ” You know the rest.

5. Rally The Troops

I was really surprised by this, but if a representative receives 3 to 4 concerns about the same issue, they consider it something to look into more thoroughly.   Imagine what they thought when we tied up their phone lines for a few days.

6. My Gain Is Whose Pain?

Always take into consideration how your bill will affect other groups within the disability community.  I was really excited when we were able to stop and rewrite some legislation for our little ones with disabilities.  When I didn’t get the love from other groups, I realized that everything we had gained meant someone else lost.

In most instances, budgets don’t increase – they shift.  So you may get excited that they have added yet another class of individuals to the ever growing list of those with disabilities, but keep in mind, the pot doesn’t get any bigger, the same resources simply get spread a little thinner.

7. Never Lie Or Threaten

This is self explanatory, but the the minute you start making threats, or say things that are not accurate you will immediatley loose credibility. The second a Legislator feels like they are being browbeaten, or threatened they will ignore you and move on to other pressing issues.

8. Don’t Go It Alone

Finally, if you consist of a large group of people, divide by individual strengths. I was great at meeting with legislators. My friend understood the laws.  My other friend could rally up the parents and put together letters for parents to download and sign.  We all had a job and we worked together and in the end, we were quite successful – as a group.

9. Don’t Rely Only On Government

My work dealing with legislators and legislation was was strenuous, emotional and time consuming.I would not trade the experience for anything, but eventually I did burn out.

I saw things which I simply could not live with and probably explains why I write so often  about my desire to have the disability community less dependent on government and more dependent on business and individual opportunities.  I know this scares families, but if you could see the inter workings of the political process, you might change your mind.

Emotions tied to disabilities are enormous – especially when it involves children.  This process of fighting for more or fighting to simply keep what we have is so often wasted in the political process.  Imagine if we took this energy and focused it in other arenas.

Best of luck!


Written on January 16, 2013 by:

Valerie represented tens of thousands of families of children with disabilities in Indiana as the Chairperson of the Interagency Coordinating Council for Infants and Toddler under three Indiana Governors from 2001-2006 . This experience, along with raising a young daughter with Down syndrome, has provided her with a unique view and understanding of the issues facing the disability community. You can read her blog at