CCDI Lifetime Member Lester Pritchard has been named Justin Dart Distinguished Citizen of the Year; the most prestigious award CCDI can honor any advocate with. Acting Executive Director Vickie Wilson made the announcement in early January and Pritchard will accept his honor at the Annual Awards Dinner on May 11, 2004. “There is no one more deserving of this honor than Lester, he is just such a true advocate at heart,” said Wilson.

Pritchard has been a longtime member of CCDI and one of the most active and high profile advocates in the country. Pritchard exemplifies the meaning of grassroots advocacy and he has led the charge against institutionalization in Illinois. He resides in Urbana, IL with his partner in advocacy and life, Barbara Pritchard.

Look for Lester Pritchard’s most recent update on the Lincoln Developmental Center Task Force later in this edition and watch future editions of The Catalyst for more about this amazing advocate.

By CCDI Acting Director Vickie Wilson

The Americans with Disabilities Act (ADA) was passed in 1990. Since that time many Supreme Court and lower court decisions have chiseled away the rights afforded people with disabilities under this historic civil rights law. Specifically Title II of the ADA which prohibits governmental entities from denying public services, programs and activities to individuals on the basis of their disability.

Several states are claiming that Congress exceeded its constitutional authority in passing Title II of the ADA because of sovereign immunity granted to states in the 11th Amendment, which bars lawsuits against states brought by “citizens of another state, or by citizens or subjects of any foreign state.” However, several conservatives on the Supreme Court have held that the amendment also limits suits brought by a state’s own citizens and have used this interpretation as a basis for their rulings in landmark civil rights cases that adversely affect people with disabilities. This is the same notion argued by many Southern states in the 1950’s and 60’s to deny civil rights for African Americans and other minorities by putting “States’ Rights” ahead of “Civil Rights.”

Once again our civil rights are in the hands of the Supreme Court Justices in Tennessee v. Lane. When George Lane showed up at the Polk County Courthouse with a crushed hip and pelvis, he had a problem. His hearing was on the second floor, there was no elevator and the judge said he had better get upstairs. Mr. Lane, both of whose legs were in casts, somehow managed to get out of his wheelchair and crawl up two flights of stairs. While Mr. Lane crawled up, he says, the judge and other courthouse employees “stood at the top of the stairs and laughed at me.” His case was not heard in the morning session, and at the lunch break he crawled back down. That afternoon, when he refused to crawl upstairs again, he was arrested for failing to appear, and put in jail.

A second plaintiff, Beverly Jones, supports her two children by working as a court reporter. Ms Jones, who uses a wheelchair, has turned down jobs in some of the 23 Tennessee counties without accessible courthouses. Once, in a court without an accessible bathroom, she says, the judge had to pick her up and place her on the toilet. Another time, one of the court employees carrying her upstairs slipped. By chance she fell into someone else, she says, but she nearly fell all the way down.

Ralph Ramsey, a third plaintiff, was a defendant in a civil suit. When he got to court, he sent word to the judge that his disability prevented him from getting to the second-floor courtroom. The case went on without him. An opposing attorney later came down and told Mr. Ramsey, as he passed by, that his client had just won a $1500 judgment against him.

On January 13, 2004 the Supreme Court of the United States heard oral argument in the Tennessee v. Lane case. The New York Times’ Adam Cohen wrote, “anyone looking for evidence that a mean mood has descended on the nation need only stop by the Supreme Court Tuesday for the arguments in Tennessee v. Lane.” In their briefs, the states show little sympathy for the disabled plaintiffs. Court reporters like Ms. Jones have no constitutional right, they say, to “ply their trade” in accessible courthouses. Nor, they insist, does Mr. Lane have an absolute right to attend his own criminal trial.

The LA Times reported that during Tuesday’s argument, Justice Antonin Scalia said he saw no constitutional reason why state agencies cannot discriminate against persons he referred to as “handicaps.” Some states “may not have made it easy for handicaps to vote,” he said, but that is not reason enough for Congress to subject states to lawsuits, he said.

The 50th anniversary of Brown v. Board of Education is this year. In Brown, the Southern states argued that whatever anyone thought about segregated schools, the federal government did not have the power to order them to integrate. The Supreme Court unanimously disagreed, holding that blacks had the right not to be discriminated against by virtue of their national citizenship.

Now, the court should do the same thing for people with disabilities. Tennessee may be willing to turn them into, as Mr. Lane puts it in his brief, “a second class of citizens who lack the full and equal opportunity to participate in civic life.” But the court should make clear that as Americans, if not as Tennesseans, people like George Lane, Beverly Jones and Ralph Ramsey have the right to full entry into the halls of justice – and first-class citizenship!

At the time this article is going to press, CCDI is investigating what grassroots actions would be most effective in developing a plan of action to let the justices know how appalled we are by this case. This plan will be posted on our web site and published in a future editions of The Catalyst. If you have any thoughts, ideas or contact that you think would be helpful, please feel free to call me at 1-800-433-8848 (V/TTY) or email me at vickie@ccdionline.org.

Info. provided by the New York Times, Adam Cohen, LA Times and ADA Watch.

By Jessica Hayes, CCDI Education Coordinator

In late December, 2003 the Arizona Court of Appeals ruled in favor of the defendants in a lawsuit brought by Tucson builders who argued that the nearly two year old vistability ordinance enacted by Pima County was “unconstitutional.” The Southern Arizona Home Builders Association sued the county saying that the wheelchair accessibility requirements outlined as part of the visitability ordinance had no business in the building code because they violated both the Equal Protection and Privacy Clauses of the Arizona Constitution and the county “lacked statutory authority to adopt the ordinance . . .”

Arizona’s Supreme Court disagreed. Judge Eckerstrom summed up the growing need for accessible housing in Pima County as the population ages and the number of people who use wheelchairs increases. He went on to say that, “the county addressed a legitimate governmental interest when it adopted a building code designed to increase the number of homes accessible to those in wheelchairs.”

Another complaint the builders lodged with the high court was that of placing a financial burden on homeowners who may never use a wheelchair. The court again dismissed this argument and made conclusions based on information provided by Pima County that the cost of complying with visitability requirements in the ordinance was only about $100.00 – a cost far less than that of renovating an existing home and fairly inconsequential in the budget of building a new home. The court also pointed out that the benefit to the community of providing accessible homes justifies the minimal cost of implementation.

In February of 2002 the Pima County visitability ordinance became the first of its kind enacted anywhere in the United States. It called for all new homes (including single family dwellings) in the unincorporated areas of the county surrounding Tucson to be built with:

• at least one no-step entrance
• doors at least 32” wide
• lever door handles
• reinforced walls in ground-floor bathrooms
• switches no higher than 48”
• hallways 36” wide throughout the main floor

Illinois has been a leader in the visitability movement with several communities following Tucson’s example. Bolingbrook passed a nearly identical ordinance in 2003 and other communities such as Urbana and Naperville enacted partial vistiability into their building codes. The City of Chicago amended its building code in late 2003 to incorporate visitability features as well.

A number of Illinois communities are working on local visitability ordinances and the Arizona decision serves as a great victory for advocates everywhere. National legislation was introduced in 2003 by Illinois Representative Jan Schakowsky in the form of the Home Design Act, H.R. 2353 which would require all newly-built single family homes receiving any type of federal funding to meet several visitability standards including at least one no-step entrance. To learn more about visitability contact the CCDI state office at (800) 433-8848 (V/TTY).

By Lester Pritchard, CCDI Lifetime Member

The last LDC Task Force meeting was held on December 17, 2003. The group continued its discussion of attracting private commercial and housing developments on the former LDC campus. The Illinois Housing Development Authority will conduct a market survey of the Lincoln community to see if the local economy would be able to support these developments. The survey is scheduled to be completed by mid-February.

Unfortunately, plans still include the four ten-bed group "homes." However it was decided that they all would be fully accessible. The State needs to receive approval from the Illinois Health Facilities Planning Board before opening the group homes and the disability community will have an opportunity to express opposition at their hearing.

Plans also include a dental clinic and a respite/crisis intervention center. Former workers are pushing to move some former residents into the crisis intervention center on a "temporary" basis until the new group homes are completed. I am opposed to this because the design of the respite and crisis intervention center will probably not be compatible with the needs of permanent residents. Also I suspect that the workers hope to move people in and simply keep them there. The more people there are, the more jobs there will be.

The Task Force is on hold until the market survey of Lincoln is completed. I will continue to keep you all updated as future events unfold. Thank you for your continued support.

Together, we will indeed overcome!

Movies and television are not just entertainment. They have the ability to shape opinions, introduce new ideas and solidify attitudes about our world and the people in it. The inaccurate portrayal of people with disabilities in movies has long been a sticking point for many disability rights advocates.

“Movies From Mars” is a monthly column written by Marlin “Mars” Thomas. Mars is from Alton, IL where he works at the IMPACT Center for Independent Living. He studied film at Southern Illinois University at Edwardsville. Mars has muscular dystrophy and uses a wheelchair. E-mail Mars at mars@ccdionline.org.

Gigli (2003)
Starring: Ben Affleck, Jennifer Lopez, Justin Bartha
Director: Martin Brest
Length: 2 hrs. 1 min.

Have you ever heard someone describe a migraine headache? They tell you how it drains all their strength, makes them nauseous, and makes them feel as if their head will explode. You imagine how terrible a migraine must feel. Then one day you unwittingly experience the movie Gigli and you know exactly what they are talking about. I could not have dreamed this movie was actually as horrible as all that I heard, but alas, the migraine ensued.

Let us start with the alleged plot. A hired gangster Larry Gigli (Affleck) kidnaps a man with a cognitive disability, Brian (Bartha), whose brother is a federal prosecutor. The man who hires Gigli also hires another “assassin” Ricki (Lopez) to make sure that Gigli doesn’t mess the job up. That seems to be what it is supposed to be about, but there is this whole Baywatch-gangster-falling-in-love-with-a-lesbian-while-evading-non-existent-legal-authorities story going on. I think it was supposed to be a dark comedy. It was not at all dark though and it was impossibly unfunny. The plot was as weak as the excuses to keep Lincoln Development Center open. The acting and dialogue was stiff and unbelievable. There was a point that I thought the actors really did not have a script and were just role-playing in an audition for Jerry Springer’s new special Too Boring for My Show. OK, the movie sucked, but could the disability portrayal really be that bad too?

I cannot understand how one film can have a disabled character as an object of sentiment and complete cliché. It is lazy and offensive. Brian is a man with a cognitive disability that lives in an institution and Gigli kidnaps him (Actually just goes in and walks him out?). Gigli unwittingly befriends Brian and just cannot harm this hopeless “half-wit” because he enduringly quotes rap songs and wants a girlfriend. Brian is a plot point that is as abused just as he is pitiful. They have these moments where I expect the studio audience to make a prompted “awwww,” yet, throughout they call him a “retard” and talk to him like a pet. I am plain angered at writers and actors who have no sense of who they are portraying. This clichéd characterization of a person with a disability follows through in too many good films as well.

This movie was not really torture because I could have turned it off. However, it is a warning sign that movies can be bad for your health. Please stay clear of this movie. It is as bad as you imagine. If you hear it calling you from the video store shelf, please ignore. I know that Bennifer is appealing, but it is just a ruse. You have been warned. Please take heed. Gigli can’t harm you if you stay away.

Quality: One Star
Disability: One Wheelchair

Editor’s Note: Mars requested that we print a half-wheelchair instead of giving this film and entire chair. Due to the nature of the wheelchair icon we use, it was not possible to make half a chair and have it still remain recognizable.

The Story of a TV-addict’s Dream Come True

By Marlin Thomas, CCDI Feature Columnist

A couple days before Christmas, Santa brought an early gift. No, it was not a Mars Rover Backscratcher. It was minor surgery. He read my letter! I spent two weeks mostly on my back. However, Santa brought more than co-pays and meds; I also got TiVo (www.tivo.com)! TiVo is a DVR (digital video recorder) that works as a television assistant. It records things that you request and shows that it recommends without the use of VHS tapes and an overly highlighted TV Guide. There will always be something on I want to watch without hours of looking through tapes, rewinding, fast forwarding, cussing, seeing tape-overs and shows from the late 1980’s . . .

An interesting thing is that I am watching less television. I guess I am not flipping continuously and using the double negative, “There ain’t nothing on TV!” Yet, I keep it on as if I am waiting for Bush to say something intelligent. It feels good to have this control and capability of storing about 80 hours of space if needed. Everything is controlled by remote with ease and I do not need my PA to switch the VCR tape before they leave. TiVo keeps track of weekly shows and reruns; it gives the choice of recording a whole season of a particular series. I no longer even think about what I must record when I travel, (I’m starting to think I watch way too much TV!)

TiVo cannot figure out everything I like, however, it has not recorded anything with Jerry Lewis or Howard Dean. Therefore, it does know some things. It has recorded some disability related films and such. It recorded this film short called My Other Wheelchair is a Porsche. The short was not good, but it did pertain. In addition, it was responsible for me not missing Kevin Girardi’s first post injury flirting and kissing on Joan of Arcadia. A few months ago, I wondered if TV was getting better about disability than films. I wondered until TiVo recorded episodes of 7th Heaven and Curb Your Enthusiasm. I am now convinced that they are treading through the same waters.

TiVo is making TV ad recording more controllable and easier to manipulate. It is this TV addict’s dream; an efficient organizer. It is not cheap (I got it as a gift from 4 people), but DVR’s are now being made by many different manufacturers and prices are reducing. I only wish TiVo could make all TV better, but at least it will not make my viewing pleasure worse.

By: John Eckert, Executive Director of the Statewide Independent Living Council of Illinois

I was recently contacted by a representative from the federal General Accounting Office (GAO). The GAO is the federal office designated by the U.S. Congress to, among numerous other duties, review and provide to Congress an account of federal funds being distributed to states for a variety of activities. The reason I was contacted was as the Project Manager of the state’s second Workforce Investment Grant (WIG-2) originally awarded by the U.S. Department of Labor to the Illinois Workforce Investment Board. It is currently being administered by the Illinois Department of Commerce and Economic Opportunity.

BACKGROUND ON STATE’S 2ND WORKFORCE INVESTMENT GRANT (WIG-2)
WIG-2’s primary goal was aimed at increasing the capacity of eight (8) selected One-Stop Employment and Training Centers (called “Model” One-Stops) to better serve people with disabilities. At the beginning of the grant, each of the Model One-Stops received an “enhanced” set of assistive technology (AT) equipment and software for use in their resource rooms. The AT included a Braille printer and stand, a computer (with a large monitor, printer, and height adjustable table with Ergo Rest arm supports), extensive software (Aurora Word Prediction, Dragon Naturally Speaking, Duxbury, JAWS, WYNN Literacy, Zoom Text) and additional equipment to enhance accessibility in their resource rooms. In an earlier Department of Labor Workforce Investment Grant, all of the 44 “comprehensive” One-Stops received a selected assortment of AT (see related story below).

Additionally, the Model One-Stops have received comprehensive training on programs and services effecting people with disabilities, and trained AT Specialists have been working to develop local “AT Teams” at each of the locations to best assist customers with disabilities in their resource rooms. The Lombard One-Stop has been a pilot site in developing a protocol for identifying and best serving individuals with “hidden” disabilities (specifically psychiatric and learning), and are developing a best practices manual for statewide distribution. An interactive Web site on the types of AT available was developed, and two groups of researchers are looking at the “WorkKeys” assessment tool in the One-Stop and its accessibility to all people with disabilities. A final piece of WIG-2 was to conduct extensive marketing and outreach about the One-Stop system to people with disabilities throughout Illinois.

MY OBSERVATIONS TO THE FEDS (PLUS A FEW MORE)
Over a year ago, one of my colleagues was visiting a One-Stop where one of the staff stated that serving people with disabilities was merely the current “fad,” noting that the last fad, according to this individual, was serving individuals where English is their second language. I use this an extreme example of the pervasive ignorance and bigotry that people with disabilities have faced for decades! This example does; however, identify that people with disabilities still have a long way to go to educate people working within the workforce development system that the One-Stop system in Illinois is for everyone. And WIG-2 is a step in the right direction.

Since the passage of the federal Workforce Investment Act in 1999, increasing the capacity of One-Stops to serve people with disabilities has been viewed as a priority by the Department of Labor. And my feeling is that the majority of the eight Model One-Stops have made great strides in learning the “ins and outs” of working with AT and recognizing their mandated role to serve anyone coming through their doors. But part of the problem many of us associated with implementing WIG-2 stems from issues of commitment and communication; both from the “top down” and “bottom up.” I have been frustrated by the varying and inconsistent level of support displayed by Directors of state agencies who fain support but don’t follow though with articulating to their respective mandated One-Stop partners the importance of what WIG-2 is trying to accomplish. Similarly, there has been a reluctance at the local level by certain One-Stop mandated partners to take a real interest in making their One-Stops truly accessible to all the state’s residents who may wish to access their services. It’s not their choice, it’s the law!

While admitting in my conversation with the representative of the General Accounting Office (GAO) that problems exist, I was able to share some positive observations. I truly believe that real change is occurring– and that though WIG-2 and the recently funded “Disability Program Navigator” grant– Illinois will continue to improve access to all in the One-Stop system. The Navigator grant to the Illinois Department of Commerce and Economic Opportunity is jointly funded by the Department of Labor and the Social Security Administration which is a welcome display of collaboration between federal agencies. Many of the Model One-Stop staff are genuinely excited about learning how to better serve people with disabilities and utilizing the AT equipment and software in their resource rooms, but one key element seems to be missing.

TAKE A VISIT TO YOUR LOCAL ONE-STOP AND ACCESS THEIR SERVICES
My final observation to the GAO representative requires your involvement. One of the concerns that many of the stakeholders involved with WIG-2 share with me is that people with disabilities aren’t coming through their doors. While WIG-2 and previous grants have done extensive marketing to people with disabilities there has been little increase in the numbers of individuals accessing the services of their local One-Stop. With an unemployment rate of over 70% for people with disabilities, Illinois’ One-Stop system is a key tool that we must take advantage of to reduce this unacceptable rate. To find out where your local One-Stop is located, call the Coalition or visit their Web site at www.ccdionline.org . If you encounter problems with access at the One-Stop, let us know. If the AT in the resource room of the One- Stop isn’t working or no one knows how to use it, let us know. If you have a positive experience at your local One-Stop, let us know. As grassroots advocates, as members of the Coalition you play a valuable role in pushing for systemic change in Illinois’ workforce development system.

Assistive Technology distributed to 44 “comprehensive” One- Stops statewide via Department of Labor grant to DHS/Division of Rehabilitation Services

Prior to WIG-2, a selected assortment of assistive technology (AT) equipment and software was provided to all comprehensive One- Stop Employment and Training Centers to better assist them in serving individuals with disabilities. The AT included a large computer monitor, a closed circuit TV, computer screen magnifying software, Web page reading software, scanning/reading software and scanner, an enlarged keyboard and adjustable keyboard tray, and an assistive listening system. In addition to the AT, accessibility audits were conducted and training on disability awareness and the types and availability of programs and services were provided to One-Stop staff. An extensive marketing and outreach effort was conducted to inform people with disabilities about One- Stop services and a “ready-reference” for businesses and employers was widely distributed.

“Our staff have developed a better understanding of persons with disabilities, and we hope to increase the use of the new adaptive equipment we have added to our resource room. As of yet, we have not had much of an increase in persons with disabilities using the resource room. I am hopeful that with more outreach the usage will increase.”
-- Cathy Bizarri, Program Manager; Partners in Job Placement & Training, Moline

“WIG-2 has made a tremendous effort in making our staff and other partner staff aware of the challenges and needs of customers with disabilities, including people with hidden disabilities. The equipment and training we have received will make our efforts much easier and more effective.
-- Zina Nolen, One Stop Administrator; Man-Tra-Con Corporation, Marion

By: Ray Campbell, CCDI Member

Recently in the news we’ve all heard much discussion on legislation which is designed to add a prescription drug benefit to Medicare. President Bush signed this legislation into law on December 8, 2003. What was a common theme in the political and public debate over this issue? It was that Seniors needed this legislation to combat high drug costs. In his weekly radio address of November 15, 2003, President Bush touted the benefits of this legislation. He used the word “Senior” or “Seniors” 22 times during that approximately three minute speech.

Even though this legislation offers help to people with disabilities to cover prescription drugs, why didn’t, for example, the President mention this as much as once during his radio address? It is in large part because people with disabilities do not vote. Seniors are mentioned prominently because they do vote in large numbers. Politicians know that if they do anything to harm Social Security or Medicare that Seniors will rise up and vote them out of office. On November 18, 2003 during a press conference sponsored by the LIFE Center for Independent Living in Bloomington, Illinois, American Association of People with Disabilities (AAPD) Vice President Jim Dickson whom I look up to as the guru of voting rights for our community said that if we want more accessible and affordable housing, better transportation, quality rehabilitation programs and so on, we must get out and vote. Just like those Seniors, people with disabilities must rise up and oppose politicians who do anything to threaten programs we depend on. We haven’t done this in the past which tells them that it’s OK to cut programs and services we need. According to AAPD, only 42% of Illinois’ voting age population of people with disabilities or 771,427 voted during the 2000 elections. This means more than half of us who could cast a ballot in 2000 did not. Are we as a community going to continue to sit by and let the politicians take our apathy toward voting for granted?

The answer to this question better be a resounding “no.” If we’re not going to register and go to the polls in the 2004 elections and beyond, then we will be saying we’re content to have inaccessible housing, a lack of transportation options and other things. I know from the passion for advocacy I’ve seen from CCDI members across the state that we don’t feel that way. Let’s prove it by registering and voting in 2004. How can we make the disability community’s vote count in Illinois?

There are three things we must do. First, if you are not registered to vote, do so as soon as possible. Thanks to the National Voter Registration Act of 1993 (better known as the Motor Voter Law), many places must offer you the opportunity to register and vote. These include but are not limited to drivers license facilities, Division of Rehabilitation Services offices and Centers for Independent Living. You may also contact your local Board of Elections to find out where you can register to vote. All you need to do is bring two forms of identification with you to prove United States citizenship and your current address. For example, if you bring a notarized copy of your birth certificate and your Illinois Driver’s license or state Identification card that will work. Register as soon as possible, but do so at least 30 days prior to the 2004 election season. If you want to vote in the March 16 primary, you should register by February 13, 2004; if you plan to vote in the general election on November 2, 2004, you should be registered by October 1. Once your registered, then you just have to get to the polls and vote. It is likely that during the 2004 election current voting procedures will still apply. If you need to know where your polling place is and for some reason you do not receive this information in the mail, call your local Board of Elections and they will help you. If you cannot get into the polling place, curbside voting is available and must be provided in accordance with the Americans with Disabilities Act. If you need assistance casting your ballot, you can either bring someone with you or there will be someone at the polling place who will assist you in marking your ballot. In the next few years, voting will become more accessible and I’ll discuss that later. However for 2004, don’t use accessibility concerns as an excuse not to vote. Don’t let lack of transportation stop you from voting either. Ask a neighbor or friend to drive you to the polls, use public transportation, paratransit services or a taxi to get there, or you can give your area CCDI chapter or center for independent living a call and they can try and hook you up with people in your area who can drive you to the polls. Call the CCDI state office at 800-433-8848 (V/TTY) to find the contact for your local CCDI chapter. There is always the option of filling out an absentee ballot as well. Call your local Board of Elections for information on how to do this.

I mentioned earlier that voting will become more accessible to our community in the next few years. This takes me to the third thing we must work on. The Help America Vote Act (HAVA) which was signed into law by President Bush in November of 2002 requires that by January 1, 2006, polling places must be accessible to voters with disabilities including having at least one machine that voters who are blind or visually impaired can access independently. It is all of our job to make sure that all of Illinois’ 110 election jurisdictions comply with this date. I am serving in a growing ad-hoc group of advocates from across Illinois who are fighting to make voting accessible. You can help by contacting your local Board of Elections and letting them know you are not happy at having to either vote at the curb because a polling place is not accessible or having someone else mark your ballot because you can’t do it yourself. Tell them you want them to do whatever they have to in order to provide you with an accessible polling place and/or a voting machine you can use independently. Please also communicate this same message to the Illinois State Board of Elections either by writing or calling them as follows:

Dr. Dan White, Executive Director of the Illinois State Board of Elections
James R. Thompson Center, #14-100
100 West Randolph Street
Chicago, IL 60601
(312) 814-6440 (V/Relay)
Fax: (312) 814-6485

Finally, communicate this message to your state representative and senator and the Governor’s office. The Governor can be reached as follows:

Honorable Governor
Rod Blagojevich
207 Statehouse
Springfield, IL 62706
Fax: 217-524-4049
E-mail: governor@state.il.us

It’s important that if you send a fax or e-mail to the Governor, include your regular mailing address so he can respond. Watch The Catalyst and other publications for future information on where you can see accessible voting systems demonstrated in your area. Be ready to participate in press conferences and meetings if and when scheduled to express your feelings on this issue. Finally, candidates will be having town hall meetings and other forums to tell you about all the wonderful things they’ll do for us if we vote for them in 2004. Attend them and ask them if they are committed to making sure Illinois makes voting accessible to you so you can vote independently by secret ballot just like all other voters. Make your decision on voting for them in part based on the answer you get.

We’ve all got work to do. Let’s get registered to vote as soon as possible if we are not currently registered, let’s do whatever we have to and get to the polls on election day, and let’s work hard to make sure the promise of independent access to the polls in HAVA becomes a reality across Illinois. If we don’t register, vote and fight for better ballot access, then we’ll have no one but ourselves to blame when we continue to struggle with inadequate housing, ineffective rehabilitation, service cuts, fare increases for transportation, threats to our programs and on and on and on . . . Are we going to sit by and let the politicians ignore us or are we going to stand up and be counted?

Will and Sangamon County Chapters

Will County
The Will County Chapter of CCDI has been hard at work in Joliet over the winter with a variety of projects. As we reported in past Chapter Highlights, the Will County Chapter had one of their most successful events ever with their 2003 Disability Mentoring Day project, but the chapter has taken no time to rest.

The Will County Chapter partnered with several different groups in Joliet to help the Hurtado family fulfill a long time need - a ramp outside their home for daughter Samantha. The chapter worked closely with the Joliet Police Department, the Will-Grundy Center for Independent Living, Home Depot and Alexander Lumber to make the ramp possible.

Will County Chapter President Erwin Ricken credited fellow chapter member Dorothy Chess with heading up efforts from the chapter to help get the ramp built. Thanks to Dorothy for her hard work and sending in the picture featured in this article.

President Ricken also said that the chapter was planning to now turn their focus toward fundraising in the coming months. “We try to raise money to send people to the conference,” said Ricken.

Sangamon County
The Sangamon County Chapter welcomed the holiday season with their Annual Holiday Party for Children with Disabilities on Saturday, December 13, 2003. Well over 100 children plus parents packed the Prairie Capitol Convention Center meeting space. The party featured snacks, face painting, games and a special appearance from Santa himself. Every child in attendance received a wrapped gift from the chapter as well.

The chapter had assistance with this year's party from the local ABATE Chapter and Springfield Boy Scout Troops. Both groups helped with set up and tear down of the events by moving hundreds of gifts and decorations to and from the party. The chapter would like to extend a special thanks to ABATE and the Springfield Boy Scout Troops for their assistance.

The Sangamon County Chapter is now planning their annual membership drive and chili/soup dinner to be held on April 1, 2004. The event grew so large last year that the chapter has decided to move the dinner to a bigger space at the First Presbyterian Church in downtown Springfield. The dinner costs $5.00 per person which includes all you can eat chili/soup, dessert and drink plus a one year membership to the Sangamon County CCDI Chapter. All of the food is prepared, donated and served by chapter members.

By Charlotte Cronin, Executive Director of the Family Support Network

The Family Support Network (FSN) and the Coalition of Citizens with Disabilities in Illinois have much in common. Both of our organizations are made up of people with disabilities, people who love them, and people who care for them. In the case of the FSN, that is often family, most often moms and dads.

We are dedicated to the same goals; making sure that supports and services are available that allow people with disabilities to live in their own homes, in their own communities with pride and dignity. We want those services to be easy to find, easy to access and easy to use.

The FSN got it start in 1989 when the Family Assistance and Home-Based Support Services Programs were created. Our number agenda has been to make sure that funding is available so that everyone who needs these services is able to access them. While we have not met that lofty goal, we have made great strides toward it. Today more than 2,700 adults and children are enrolled in the Family Assistance and Home-Based Support Services Programs. Far too many people remain on the waiting lists for these program. The FSN continues to fight for new funding so more can become enrolled.

Much work remains to be done. Services for people with disabilities in Illinois need to grow and improve. The FSN has worked toward these goals by:
Educating policymakers about the importance of the Family Assistance and Home-Based Support Services Programs to people with disabilities and their families,creating the FSN Task Force to advise DHS in the redesign of the Home-Based Support Services Program for people with developmental disabilities, allowing the state to capture critical federal funding, distributing our newsletter to a mailing list of more than 4,600, participating in the “Do The Right Thing” Campaign along with other Illinois organizations, agencies, and advocates to educate policymakers on issues important to the disability community in Illinois, and presenting information on family support at numerous conferences, workshops, and group meetings across Illinois.

Your membership in the Family Support Network is critical! You can read more about us at www.familysupportnetwork.org.

Remember, we are strong together!

You can reach the Family Support Network at (309) 693-8981.

Editors Note: This is the story of the Camp family from Peoria, IL. The Camps were selected as recipients of Family Assistance and Home-Based Support Services Programs. The following was forwarded to CCDI via the Family Support Network.

By Tricia’s Mother, Mary Camp

There are many milestones in the life of a child that are celebrated. If your child has a disability a blanket of fear and questions accompanies those celebrations. None have been as great as worrying about my daughter's, Tricia, future.

Tricia's life is complicated. She has multiple disabilities that require a lot of care. She has five doctors and takes a lot of medications. She needs lots of equipment; a ramp into the house, modifications to the bathroom, a wheelchair, a positioning stand to name a few. Tricia needs constant assistance to meet her personal care needs like dressing; toileting, bathing, eating and well even to enjoy life. She needs help to watch a movie, take a walk, go to church, and go shopping; all young adult pleasures.

How can I be assured that those who care for her will provide the care and love she has at home? The answer is that no one can replace the person she knows as mama. The only answer is to keep her home for as long as I am able. Without help, however, that "as long as I am able" was coming to an end. Then a letter came. Tricia's name had been chosen for the Family Assistance Program. I cried.

For days, when I went to greet her smiling face in the morning, my thoughts were, "I can keep her home!" With this financial help, I can greet her with "Good morning, my darling girl" thousands of more times.

I bought her a new pair of shoes for the first time in six years. I bought her a spring coat for the first time in her eighteen years of life. These are pleasures only a parent can appreciate. I found a personal attendant to stay with her after school. Also in the summer, we have Tuesday/Thursday mother daughter outings with the help of the attendant. These are times I treasure. The memories will last forever. Now I will be able to help pay for that. We also bought a new van with a lift. Our old one was 12 years old and we didn't know when we could replace it. Now that my son is gone the lift is invaluable. I cannot lift her into a car no matter how much I wanted. Could you imagine life without leaving the home unless some else did it for you?

Tricia transitioned to the adult world sooner than I care to admit. Before this support, I didn't know what she would do with her time after graduation. It costs $800 a month to enroll her in day training at our local ARC. I couldn't afford that. If Tricia had to stay home, so did I. I am the sole support of our family.

There are many other things we have accomplished because of state funding. I know how badly families need this support. Too often families struggle with so little; sometimes to the point where they have give up and make their child a ward of the state. There was a time when I did not even have money for diapers for her. This kind of support needs to reach as many families as possible.

This kind of support needs to reach as many families as possible.