The Catalyst

CCDI Catalyst August 2015

Published: & 2015-08-20

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   August 2015              

We are happy to be sending you this first edition of the "going green" version of our newsletter. There are some of you reading this have been receiving The Catalyst since the first edition in January of 1987.  There is at least one person receiving this who even wrote for the first edition!  We are extremely grateful and appreciative to have such an engaged and devoted constituency for such a long duration of time.  Big thanks to all of you for making us who we are and for your continued support!

Meanwhile, others are just now receiving their very first edition of The Catalyst.  On behalf of our board of directors, as well as our executive director, I would like to begin by extending a warm welcome to you, our new advocates and allies.  We are delighted that you have joined us and hope that your involvement with The Coalition of Citizens with Disabilities in Illinois proves beneficial as I suspect we are working towards many of the same goals.

Illinois Budget Update

Due to the current budget impasse in Illinois, many non-profits and human service agencies have begun to close, forcing agencies to turn away thousands of Illinois' most vulnerable residents. These families will not receive the vital services and support they need because the state budget deadlock has no resolution in sight.

Many of these threatened services are for people with disabilities, such as centers for independent living. Be sure to contact your local center and see what you can do to join in their advocacy efforts.  

If there were ever a need for advocacy in Illinois, it is now!  Here are a few things that you can do to help.  First, respond to our action alerts and those of other advocacy agencies.  You can read more about that in the article below about affective advocacy. Second, you can tell your story on how the state's inability to create a budget is affecting your life.  News media are very interested in hearing your story.  If you need help getting in touch with a media source to tell your story contact us. Third, be sure to write your legislator and share your concerns and ask for their support.


One of the many programs that have been affected by this budget crisis is the Low Income Home Energy Assistance Program (LIHEAP). Community Action Agencies have already laid off over 1,000 staff and have begun to shut down facilities and services. The results have been dire. There are a total of almost 1,300 PIPP customers cut off the program and is not eligible to reapply until open enrollment in December.  A total of 3,208 Ameren customers have been disconnected in Peoria County alone.

If you utilize(ed) the Percentage of Income Payment Plan (PIPP) program, The AARP would like to speak with you about loss of services. *You do not have to be a senior citizen. Part of what they would like to do is to collect stories on the impact of not having PIPP, share them with legislators and hopefully change the rhetoric on LIHEAP and PIPP. If you use PIPP or have clients that use PIPP, Julie Vahling would like to hear from you at (217) 821-0112.

In a letter dated July 15, 2015 from the Emily Monk, the Acting Deputy Director of the Office of Energy Assistance  said that, “in light of current funding availability, a summer cooling program was not and will not be administered this summer.”  The letter went on to say that The Department of Commerce and Economic Opportunity’s (DCEO’s) decision not to administer a summer cooling program this year was necessary so that they can ensure adequate funds are available for the winter heating program.
The letter continued with, "as always, state agencies including DCEO, the Illinois Emergency Management Agency, the Illinois Department of Human Services, the Illinois Department on Aging and the Illinois Department of Public Health will coordinate efforts with local officials to provide services such as cooling centers, wellness checks and other assistance to ensure public safety in times of extreme weather."
In addition to LIHEAP Administering Agency resources, the Keep Cool Illinois website is also available to the public.  Please visit for more information on how to stay cool and safe this summer.

Being an Effective Advocate

Many of you reading this have been involved with grassroots, cross-disability advocacy for quite some time.  There is always something left to learn and I am remain grateful for the education and wealth of knowledge I have received from (and continue to receive from) so many advocates and allies in the short amount of time that I have been with CCDI.  At the other end of the spectrum, I know there are some of you who are eager to assist with efforts, but may not fully grasp what we have going on.
We do have to fulfill the obligations of the grants we operate under through the Illinois Department of Human Services (DHS) and The Department of Economic Opportunity’s (DCEO) Low Income Home Energy Assistance Program (LIHEAP), but grassroots cross-disability advocacy has always been and will remain a cornerstone of CCDI.  Nothing gets decided about us without us!!

The first paragraph of the first edition of The Catalyst stated that, “since this newsletter represents you, the Coalition membership, we encourage your ideas and participation in putting together future issues.”  This was written 28 years ago, but nothing has changed.  We still pride ourselves on being a central hub for all local, state and federal issues that affect us and the people with disabilities around us.
If your group is doing something fun like an ADA Legacy Tour Celebration bus stop (for example) and you would like for us to promote it on our web page, let us know.  We would love to help get the word out.  If there is something more serious like legislation that you think we should be taking action on, then by all means, make sure we have this information as well.  Summarily speaking, any time there is something you would like to have us pass on to a larger audience, please send it to either Ben Burke at or Melody Norton at  We will do whatever we can to help.
Effective Advocacy & Letter Writing Campaigns
For the benefit of those who might be unfamiliar with how it works, we thought it would be beneficial to include a quick breakdown on call to action alertsblastsCapwiz alerts or what has traditionally been referred to as a letter writing campaign.  In a perfect world, we would make all of our own, but often times we end up forwarding on an email that would fall under any one of the above-mentioned, somewhat synonymous themes.
Here we go.  So, you receive the email from us.  You have never taken action by interacting with your (in most cases) representatives, but you want to.  It is incredibly easy from here forward.  
The bulk of the email should state facts on said issue and will likely have a supporting argument as to why you should share the same stance.  When you click on the obvious link, you are going to wind up on a web page with a sometimes editable, but always prewritten letter to the person/people with decision making power over the issue at hand.

When you enter your name and address for this prewritten letter you stand behind, the software uses that information to make sure that YOUR specific representatives receive the letter.  Our software lets us know who the all-stars are who interact and send letters on with every blast and we applaud you, but it was worth noting and reminding others of how it works.  Some people were sincerely unaware or forget about the power we have in numbers and we hope that next time an alert shows up in that inbox regarding something you believe in that maybe you decide to take a minute and let them know how you feel.

CCDI's 2015 Disability Rights Conference

This year's Annual Disability Rights Conference was held at the Abraham Lincoln Hotel and Conference Center a few blocks from our office in Springfield, Illinois on May 18th and 19th.  

Those of you who could not make it missed  keynote speaker Andrés Gallegos' inspiring and enjoyable presentation.  Mr. Gallegos recounted the story of his ascent to the top of Pike's Peak using a wheelchair, while doing a great job of relating his experiences to and interweaving them with other challenges in life that the disability community must face and conquer.  He set the tone and really got everything moving in the direction of this year's theme of "Reaching New Heights."
Andrés Gallegos, Melody Norton and Spud Egbert
Thanks to the time and effort put in by our Executive Director, Melody Norton, as well as the rest of our presenters, we were able to have six breakout sessions split between an independent living track and a grassroots advocacy track.  All of the presenters were well informed on their subjects and had a lot to share in the short amount of time we all had together.

Workshop presenters Jeanine McAllister and Jodi Scott We want to say a very public thanks again to Rickielee Benecke (Self Advocacy), Jeanine McAllister & Jodi Scott (Practical Independent Living), Barbara Pritchard & Megan Fortune (Making an Advocacy Plan), Amber Smock (Grassroots Advocacy w/ Melody Norton), Sarah Durbin (Systems Advocacy w/ Melody Norton) and Michele Miller (Building a Consumer Caseload).  The knowledge and insight shared on these subjects is greatly appreciated and will prove beneficial over time for the members of Illinois' disability rights community that were in attendance.

Independent Living Day Rally

As the disability rights advocates in attendance at our conference enjoyed lunch in the large ballroom on day two (May 19th), Amber Smock of Access Living in Chicago took the reins for our plenary session before what was the First Annual Independent Living Day Rally in the Illinois State Capitol Rotunda.  She did a great job of bringing everyone up to speed on the important issues and made sure we were all energetic and on the same page with our message.  It was shortly after this that we all started to migrate about 8 blocks away to The Illinois State Capitol Rotunda.

The group heading over from our conference was comprised of over 125 advocates. And, thanks to the additional large groups mobilized by, and on behalf of LIFE CIL in Bloomington, as well as a sizable group from Access Living in Chicago who made the trip for the afternoon, our presence was definitely felt from the start.  Everyone who took the time to go there and help advance the collective agenda is worthy of praise and was an important part of the successful advocacy efforts.  That said, I know that Rickielee Benecke of LIFE CIL and Amber Smock at Access Living had to jump through a lot of logistical hurdles to move such large groups back and forth for this.  They really made it happen and it really made a difference!

CCDI has conducted an annual rally for many years, but this year it was our pleasure to dedicate our focus to the independent living movement.  We partnered with the Illinois Network of Centers for Independent Living (INCIL) and the Statewide Independent Living Council (SILC).  The invaluable contributions in many forms from Matt Williams of INCIL and Tara Dunning of SILC made everything go very smooth overall.  In addition, we were fortunate enough to have INCIL’s Executive Director, Ann Ford, presiding over the rally, introducing scheduled speakers and working in impromptu speeches from representatives eager to let us know their stance and plans for action on the issues we came to discuss.
Now you know just about everything except for the legislation that brought us there in the first place.  The Determination of Needs (DON) score was/is under threat of being raised from 29 to 37.  This would meant that 10,000 out of 30,000 people in the Home Services Program with disabilities would lose all services because the minimum threshold would be set too high.  We asked legislators to co-sponsor HR344 and SR342 which opposed the change in the DON from 29 to 37.
After the rally we made legislative visits and asked Senators and State Representatives to co-sponsor HR344 and SR342, which opposed changing the DON from 29 to 37.  This resolution was introduced by none other than this year’s recipient of CCDI’s Senator Penny Severns Memorial Award (formerly Legislator of The Year), Senator Dan Kotowski.  We achieved the objective that everyone set out to accomplish that day when the resolution to SR342 was later adopted as amended on May 31st. Senator Dan Kotowski and Melody Norton
While so much hard work has already been put in by so many, there is still work to be done.  In regards to the DON score, please continue to show your support by telling your representatives to vote YES on HB972 HA1.  House Amendment 1 to House Bill 972 has been filed to preserve the DON score and stop the cuts to home services. Please take action by contacting your legislators by clicking here.  Your email will go to all of them with just a click.

CCDI's Annual Awards Recipients
The Bank Long Jr. Markeeta Award is presented annually to an individual who has shown strong leadership skills and advocacy. For their advancement and progress as a youth in pursuit of social justice. 
Kellsey McGuire is 9 years of age and a 3rd grader as Jordan Catholic School in Rock Island.  In January of 2014 Kellsey received service dog, Jasper, to alert her parents and others of impending seizures.
Kellsey McGuire & Family with Board Member Liz Sherwin Within a month of receiving Jasper, the family was told by the Sherrard School District that Jasper could no longer attend school with Kellsey, in direct violation of the ADA. After several instances of discrimination against Kellsey and Jasper the McGuires made the decision to withdraw Kellsey from Sherrard and enrolled her at Jordan Catholic School. At Jordan, Kellsey and Jasper were both welcomed with open arms and hearts.  Jasper is even included in the 3rd grade school picture.
The family filed a discrimination complaint against the school district with IDA and the judge ruled in their favor under (2) areas: Hostile Environment and Denial of a Free and Appropriate Education.  The Sherrard School District appealed the decision and it is pending.
Friends of the McGuire’s started Justice for Jasper to raise awareness about the blatant discrimination on the part of the Sherrard School District and its board. This issue has been publicized locally and nationally.
She and her family have done a tremendous amount of work over the last several years to promote Epilepsy awareness. They, along with many friends, started ribbonsforkellsey.
The Senator Penny Severns Memorial Award (formerly Legislator of the Year). This award honors a legislator from Illinois who has shown outstanding support of issues that are important to people with disabilities. 
This year’s recipient was a Senator that has done so many things to help people with disabilities. He has sponsored many bills that help the causes of people with disabilities including SR 342 which oposes the raising of the DON score. He is a board member for the Epilepsy Foundation and recently advocated to restore funding to autism, epilepsy and early intervention.  This year’s recipient of the Senator Penny Severns Memorial Award (formerly Legislator of the Year) is Senator Dan Kotowski.
The Doctor Judy Smithson Advocacy Award. This award is presented annually to an  individual who has displayed strong leadership and advocacy skills.
This year’s recipient has shown commitment to advocacy activities supporting the human and constitutional rights of citizens with disabilities. This year’s winner is the disability rights advocate for Life Center for Independent Living in Bloomington. She is tireless in this role while advocating in the areas of housing, transportation, health care, Human Services/CIL Funding as well as attitudinal & physical barriers.  She participated in the Not Dead Yet Action in Chicago last summer. 

She teaches legislative and community advocacy skills and co-taught theAdvocacy 101 class in 2014 and by herself again this year.  She serves on the SILC/INCIL Advocacy Strategy group. She recently completed the grueling, prestigious Multi-Cultural Leadership program in McLean County.  We are thrilled that this year's recipient of the Doctor Judy Smithson Advocacy Award is Rickielee Benecke.
The Barbara Pritchard Award.  This award is given annually to an individual who has done outstanding work as an advocate behind the scenes.  This individual rarely seeks the spotlight for themselves, but instead spends a great deal of time helping others to succeed and meet their goals.
The winner of this year’s Award has been a tireless advocate for people of all disabilities, but especially those that are deaf or hard of hearing. She use to be the Deaf Services ILS at LIFE CIL. She works closely with the IL Deaf & Hard of Hearing Commission.  She is a board member for the SILC,which also presents itself with other duties, as she is on the executive committee and is a member of of the SILC’s advocacy committees.  She has been described by others she has worked with as a very hard working advocate for persons who are deaf.  She has great vision and ideas.  The winner of this year’s Barbara Pritchard Award is Dana Craig. Award recipient Dana Craig
The Justin Dart Distinguished Citizen Award is the most prestigious honor the Coalition presents.  Past recipients include Senator Hilary Rodham Clinton, Former Illinois Attorney General Jim Ryan and of course Justin Dart, Jr. himself.  This award is presented to an individual who has shown an outstanding commitment to the rights of persons with disabilities.
The nominee has been an ongoing advocate for the broadest range of disability issues since…forever.  He has defended our rights at the Federal, State, and local level.  He conducts legislative training classes for those whose interest in disability rights and the political system is just awakening. 

His work with Chicago ADAPT and ADAPT clearly demonstrates his ability to motivate, organize, and successfully involve the widest elements of our community.  Known and respected throughout Illinois, other states, and Washington, DC., he has the ability to make politicians listen to our issues, acknowledge need for change, and work, often even sponsor, important legislation. 
Larry Biondi and<br />CCDI Board Member Patty Martin

Adamantly, never a disability poster child, his demeanor is that of an accomplished, educated, thoughtful and humble person (with disabilities).  He has and knows how to use his wicked sense of humor, especially double entendre - to make everyone gasp with laughter.  Most importantly, by his actions this nominee helps make everyone he contacts feel important for their abilities. 

In these and in so many other ways, Larry Biondi is the epitome of disability diplomat worthy of the Justin Dart Award. We congratulate Larry as the 2015 Justin Dart Distinguished Citizen Award recipient!
 Liheap Energy Saver Icon
It’s always the season to save energy (and money)!
Ceiling fans: If you have them, use them. By circulating the air, they make you feel
cooler, even if the temperature is high. If you’re using air conditioning, ceiling fans will
help circulate the cool air throughout the home. Remember that ceiling fans can spin
both ways, so try both ways to determine which one makes the air feel cooler.
Window treatments: Keeping the home a bit dim can help keep it cooler, but you want enough light to see, and some way to maintain your privacy. Try using sheer curtains as well as heavier, opaque ones; put the sheer ones closest to the window glass. On bright days, open the opaque curtains to let in some light, but keep the sheer curtains closed to block some of the heat, and to maintain your privacy. If you have blinds on your windows, open the blinds only partway; this will allow in some light, block some of the heat, and maintain your privacy.
Close the door: Is the outside door really closed? If you’re running central air conditioning and you can feel warm air coming in between the door and the door frame, you need insulation. Foam strip insulation is not expensive, and has a sticky side that’s easy to apply. Check the instructions on the package to see what you need to install it; most of the time, all you need is a pair of scissors to cut the strip to the right length.
Cleaner is better: If you use central air conditioning, check the furnace filters. If the filters are dirty and clogged, the furnace has to work harder. That costs you money. Replace your furnace filters regularly; some last a month, and some last longer, so check the packaging. 

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Our Mission

"The Voice: advocating equal opportunities for all people with disabilities."

Our Vision

"Equality through change at the local, state and federal levels"

CCDI - Springfield Office

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                  Springfield, IL 62701
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