If passed, HB2041 will appropriate $52 million in new funding for the Family Assistance (FAP) and Home-Based Support Services Programs (HBSSP), Community Integrated Living Arrangements (CILA), and the new Children’s Support Services Waiver, in total providing new services for over 3,100 adults and children.

Members of the Family Support Network, The Arc of Illinois, and the Autism Society of Illinois have been working hard, writing letters and calling the Governor and their legislators to encourage an increase in funding for DD services.

We’ve held press conferences and participated in legislative hearings. Letters and testimony of FSN members have been critically important in creating huge momentum in the capitol!!

This is wonderful progress. But we can’t celebrate yet. Our work has just begun. It’s time to dig deep into our reserves of energy, drive, and passion.

There are more letters to write, more phone calls to make, and more meetings to attend. We’ll keep doing our part – and we need you to keep doing yours. Can we count on you???

Right now, TODAY, call your STATE Representative and ask them to co-sponsor HB2041. Ask your STATE Senator to support a $52 Million Dollar increase in services. You can identify your legislators and find out more about state legislation at www.ilga.gov.

Watch your e-mail inbox for late-breaking news and event information. We need each of you to do your part – the best and most you can at every step. This is an exciting time in Illinois and we need you to be a part of it!

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Want to be Active from Home? Here are Some Ideas…

 1.       Make an appointment and meet with your legislators in their home offices. If you need help identifying your legislator, finding other families to join you, or would like materials to share, contact us at 309-693-8981 or fsn@familysupportnetwork.org.

2.       Talk to the media. Call your local newspaper and tell your story. We can help by supplying you with materials or you can refer them to us for more information. You can access our materials on the home page of our website at www.familysupportnetwork.org.

3.       Organize a Rally. Talk to your local service providers and see about collaborating in organizing a rally. Invite the press and your legislators. Have families tell your stories. Need help? Talk to us. We can give you ideas and hook you up with other families and service providers in your area.

4.       And, of course, WRITE THOSE LETTERS! Already written a letter? Send it again. “Hello, Rep. X, enclosed is a copy of the letter I mailed you last fall. You can help us now by signing on as a co-sponsor of HB 2041.” Follow up with a phone call or a personal visit.

5.       Write Thank You Note! If your legislator has already signed on, a few words recognizing his or her good work can go a long way.

Last month I had occasion to forward an e-mail that I had written almost three years ago to a small group of people. As e-mails will do, it has been forwarded over and over again. It seems to have ridden the waves of the internet like it is new news.

In it I described the decision my husband, Mike, and I made to let our son, Daniel, move out of our home into a group home here in Peoria over three years ago. A lot has happened since then.

We’ve had our share of soap opera moments; including a couple where I thought for sure my family had been cast in a B-grade movie. If there had just been background music, I would have been sure.

Those of us who have children know the breathtaking intensity that it is to love a child. Those of us who love a child with a disability know what it is to have that love tested over and over again, not only by the challenges of caring for that child, but by the challenges of dealing with all the systems and barriers that are designed to “help” us.

They take us to a place where only the most basic is important.

We’ve let Daniel "grow up". He's lives in a wonderful house in a regular neighborhood, just 15 minutes from us. We call it his "bachelor pad".

We're lucky. He's close by. Otherwise, I don't think we could have let him go. He's home frequently, at least once a week. We’re involved in his life and the lives of his roommates. They've been to our house for Hot Dog Roasts and Christmas Day.

Daniel seems way happier. When we take him home to his "pad", he starts connecting with the staff and sometimes seems to push us out the door.

So why am I telling you about this again now?

Because we need to continue this conversation. 

Not about the “Cronin Family Decision” but around these questions that all of us must address:

1. How long should my child with a disability live at home with me?

2. At what point do I respect that he is not a child anymore and needs to have a life separate from me?

3. How long can I handle it?

4. Do I get a life?

5. How is this impacting his/her siblings?

6. Is it unfair to ask him to deal with a whole new life and all new people at the same time he is grieving my death?

7. Is it better to help him move while I am still strong and healthy and can help him make the transition?

8. Is my home becoming his institution because I cannot handle it?

After we have worried around those questions (because there are no right answers), how about these?

1. How do we fight together to make sure services are available so that the lives of people with disabilities, regardless of where they live, are safe, full, and happy?

2. How do we make sure those services are CLOSE TO FAMILY AND FRIENDS?

3. How do we make sure that people have the services they need whether at home with family, living independently, or living with LOTS of supports in a group home setting?

4. How do we make sure that those services are available before a crisis occurs?

We have a lot of work to do.

Thank you for worrying about Daniel. I do. God knows. All the time.

Let’s worry together about his present and secure his future and the presents and futures of all the folks in Illinois that are challenged by disability.

If she can do it, so can you!

Nine-year-old Aubrie Westmaas got a great lesson in citizen advocacy and empowerment February 6^th when she visited her legislators at the Capitol!

Aubrie attended the first of two press conferences sponsored by the Family Support Network, The Arc of Illinois, and the Autism Society of Illinois and decided to build on the experience by visiting her legislators afterward.

Aubrie’s class had recently studied Martin Luther King, Jr. She had learned new vocabulary words like discrimination, equality, and separate. When she learned what the press conference was all about, she said, “Martin Luther King said everybody should be equal, not separate. They’re not doing a very good job!”

Aubrie had a lengthy discussion with her mom and visited the Parallels in Time website at (http://www.mnddc.org/parallels/index.html) to learn about the history of disability. She worked with her mom to develop a simple brochure in her own words telling about her wish to grow up, have a job, and live on her own along with the dream that all people with disabilities be able to live the life they desire.

After the press conference, Aubrie assisted in delivering official information packets to legislators. Many of the legislators were “in session” or out of their offices. So Aubrie gave her brochure to the secretaries and told them her message.

But Aubrie was able to speak to Senator Deanna Demuzio (above right ) and Representative Roger Eddy (lower left) directly.  Aubrie told everyone she met, “I want to live on my own and do all the things my brother will do. I don’t want to live in an institution or group home. Let’s help all people with disabilities to do what they want.”

She spoke clearly and confidently with good eye contact and handshakes. All of these are challenges for a little girl with CHARGE syndrome!

The very next day, she received a personal letter from Representative Eddy. He said, “Dear Ms. Westmaas, Thank you for stopping by my office today. It was a pleasure to meet with you. Aubrie, you did a very good job explaining to me your dream of having your own place someday, choosing what you want to do, what you want to eat, who your friends are and even dreaming of the ability to choose the time when you want to go to bed!

“I will do everything I can as a Representative of the State of Illinois to support your dream.

“Keep up the great work you are doing on behalf of people with disabilities. I am proud of you.”

She also got personal notes from Representative Coladipietro, whom she did not meet personally, and her Representative, Jim Watson. Apparently, she made an impact with a secretary or simply through her brochure.

If Aubrie can do it, so can you!

Aubrie will be at the Capitol for Rally Day at the Capitol on May 16^th.

Will you?

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Sometimes the most intimidating things turn out to be the easiest. Go figure!

Did you know that often our local newspapers are aching for articles? You provide it and often they will print it.

After the Feb. 6^th Press Conference, our very own Michele Westmaas decided to build on her daughter’s success by providing an article to her local press. She wrote a brief article and submitted it along with a few digital photos to her local media. The following week, the article and the photos were printed in both of her local newspapers. Easy! And you can do it, too!

Not only did she educate her local community about disability issues but she provided good press to her legislators, a great way to build relationships!

Don’t be shy. Your personal challenges and successes deserve recognition. Most local newspapers are pleased to receive news tips. Be sure to include your contact information in case a reporter needs to clarify something or wants to interview you for a longer article.

Here are some tips from Heidi Umbhau, a presenter at the 2006 “Speak Up & Speak Out Summit” in Springfield. We’ve added a thought or two of our own.

A good story:

·         Tells who, what, where, why, and how.

·         Gives facts, figures, and data.

·         Uses a vivid image to grab attention.

·         Provides information in a positive way.

Remember these ABC’s:

·         Accuracy – Never stretch the truth. The real truth is compelling enough.

·         Brevity – Stick to the point. “Just the facts, Ma’am.”

·         Clarity – Be clear and understandable. Write out all acronyms.

Stay out of trouble:

·         Tell the truth.

·         Don’t dodge questions.

·         Don’t take tough questions personally.

·         Don’t repeat negative questions – pause, and then restate it in your own words.

·         “I don’t know” is ok.

·         If it’s the right answer once, it’s the right answer always. Don’t be afraid to repeat yourself if a reporter asks the same thing in different words.

·         Don’t let yourself be interrupted.

·         You’re always on the record. If you don’t say it, it will never come back to haunt you.

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E-Mail Us Your E-mail Address!

Being able to communicate by e-mail is invaluable. We can contact you quickly and cheaply … FREE!!

When we organize our advocacy alerts, the first thing we do is compose an e-mail. We can’t afford to do a US Post Office mailing whenever we want to. It’s expensive, labor intensive, and slow.

E-mail also allows us to share information about conferences, disability services, and more. Send your updated information to InTheKnow@familysupportnetwork.org.   Please mark this address as “safe” in your e-mail manager. Thanks!

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