If growth in Chapter membership is any indication of a successful organization, we had an excellent year!
New Chapters include:
Champaign County Mental Health Board, Urbana; DuBois-Douglas Centres, Chicago; Elim Christian Services, Palos Heights; Good Shepherd Center, Flossmoor; Habilitative Systems, Inc., Chicago; Mental Health & Mental Retardation Services, Inc., Aurora; Oak Park Township Community Mental Health Board, Oak Park; Ray Graham Association, Downers Grove; Southern Illinois Community Support Services, New Baden; Southwest Community Services, Tinley Park; Streator Unlimited, Streator
ILLINOIS LIFE SPAN
Our premier advocacy, information and referral project entered its fourth year of service last April. The Illinois Life Span Project is the only place for people to go to get advocacy and information on all services such as early intervention, special education, assistive technology, social security, public assistance, adult services and much more. The project maintains a data-base of over 55,000 providers and advocacy resources throughout Illinois. The project also maintains a national data-base of services in most states through the ArcLink.
To date we have been in contact with over 22,000 individuals with disabilities and their family members. The project is a free service for people with disabilities and their families. The project is funded by a grant from the Illinois Council on Developmental Disabilities. Mike Kaminsky is the Project Director.
INTEGRATED EMPLOYMENT
Through a generous grant from the Robert R. McCormick Tribune Foundation, The Arc continues to advocate for employment opportunities for individuals with developmental disabilities. The Promoting Incentives for Integrated and Self Employment Project will have many products including: A Family Manual: Transition To Employment and Adult Services For Youth with Developmental Disabilities in Illinois; a white paper “Promoting Incentives for Integrated Employment and Self-Employment in Illinois” and a major “Employment Summit” in the Fall of 2004.
Faye Manaster is the Policy Analyst for the Integrated Employment Grant.
CONSUMER STIPENDS
Every year The Arc gives families and individuals with developmental disabilities about $100,000 to attend conferences on disability issues around the country. To date, 500 individuals with developmental disabilities and families have been served by our stipend project which is funded as an investment by the Illinois Council on Developmental Disabilities. Mary Lynne Paris is the Project Director for the Consumer Stipend Project.
ARC TRAINING
Every year, The Arc provides many “best practice” training opportunities for individuals with disabilities, their families and staff. Last year over 3,450 individuals attended those training events, including our Annual Convention, our Autism Conference and the Disability Expo.
Training Director Janet Donahue was recently promoted to Arc’s Development Director and will continue to supervise Arc’s training events.
DO THE RIGHT THING
The Arc has worked in partnership with our sister disability organizations to develop a statewide legislative and appropriation package. Members of this important coalition include:
The Arc of Illinois
The Family Support Network
The Institute on Public Policy
The Illinois Assoc. of Rehabilitation Facilities
The Illinois Network of Centers for Independent Living
United Cerebral Palsy of Illinois
This year our agenda included a $163 million comprehensive appropriation package that included funding for employment, community living, transportation and much more. We also sponsored legislation calling for a dedicated fund for developmental disabilities services.
ARC LEGISLATION
The Arc’s legislative agenda was heavy this year. Beyond the important “Do The Right
Thing Campaign,” The Arc introduced the following legislation:
“Extension of the Katie Becket Waiver.” This legislation would continue to support young adults who have been receiving services in the Children’s Waiver for Medically Fragile/Technology Dependent Children when they reach the age of 21. This legislation will be introduced again in the next session of the General Assembly.
Brittany’s Law. When a special education student was being denied her right to participate in her classes graduation ceremony The Arc was called into draft Brittany’s Law.
Special Education Due Process. This bill would restore the right of parents of a child with a disability to recover their attorney fees and expert witness fees if they are the prevailing parties in a special education due process hearing or civil suit as a result of a private settlement of a pending action. This legislation will also be reintroduced in the next session of the General Assembly.
Illinois Life Span Appropriation. We introduced legislation that would extend funding for the Illinois Life Span Project. This legislation will be reintroduced in the next legislative session.
Fee-For-Service, The Arc worked with other advocates to introduce legislation, which would address many concerns of community advocates regarding the conversion of grants to purchase of care. Most of the highlights of this legislation have been included in “Memorandums of Understanding” with the Governor.
The Arc’s Governmental Affairs Consultant is Phil Milsk.
WAITING LIST
This was the year of the implementation of The Arc’s Cross-Disability Data Base legislation. The Illinois Council on Developmental Disabilities provided the Department of Human Services with funding to develop the data-base with experts from Pennsylvania. The data-base is now being piloted throughout Illinois. Individuals with disabilities should now register with their local Individual Service Coordination organization in their area to list their needs for supports/services in the data-base.
A complete listing of the eighteen service coordination organizations in Illinois can be found at www.IllinoisLifeSpan.org or call 800.588.7002.
MONEY FOLLOWS THE INDIVIDUAL
As you read this report, the developmental disabilities system in Illinois is changing. Important changes include the individual’s right to choose a provider of service within the system. Another important change is the portability of resources as directed by the individual. These important safeguards and others are now being put into place so that individuals have greater authority regarding the services and supports they need.
MEMBERSHIP VALUE
The advocacy of The Arc on the national and state level is critical to all individuals with disabilities and their families. In addition to that important voice in Washington D.C. and Springfield, The Arc has been working to provide products of value to our chapters. Many products are now available to our Chapters and individual members that can provide great value to membership in The Arc. I want to highlight two in this report.
We now have two core products available to Arc Chapters that can provide our Chapters with substantial savings:
As an answer to the rising cost of health care, we have developed relief exclusively for Arc Chapters by Certified Health Enrollment Services.
Mutual of America offers comprehensive retirement services at reduced cost for Arc Chapters.
Both of these products have saved some Chapter thousands of dollars. For more information on these exclusive products call The Arc at 708.206.1930.
HONORING LEADERS
Every year it is our honor leaders throughout Illinois for their efforts to support people with disabilities. The following are the recipients of The Arc of Illinois 2004 Awards:
Membership Award, Aspire, Westchester
President’s Award, Pace
Direct Support Professional Awards, Elton Ladner, South Chicago Parents & Friends, Diana Tobicoe, SouthStar Services
Leadership Award, Cheryl Redell, SouthStar Services
Life Achievement Award, Cindy Zajecka, Community Support Services
Mabley Volunteer Award, Grace Magdziasz, SouthStar Services
President’s Award, Side-by-Side Coalition
Media Excellence Award – Print, Nancy Munson, Chicago Tribune
Media Excellence Award – PR/TV, Public Communications, Inc.
Leadership Award – Volunteer, Robert Schiller, Ray Graham Association
Legislator of the Year Award, Speaker of the House, Michael J. Madigan
ARC WEBSITE
The Arc website has been updated and enhanced. The new format will provide regular updates on important disability issues in Illinois and across the nation. Soon we will be offering video streaming and other state of the art enhancements.
Visit us at: www.TheArcofIL.org
ARC APPOINTMENTS
The Arc is represented on many boards, committees and task forces. This year Tony was appointed to:
Division of Developmental Disabilities Strategic Planning Team
Department of Public Aid’s Medicaid Advisory Committee
Illinois Comprehensive Workforce Development Initiative
Tony is now the Past President of the Consortium of Illinois Disability Advocates.
ARC ACTION CENTER
The Arc of Illinois now participates in The Arc Action Center. The Action Center lists important disability legislation for Illinois and in Washington D.C. The Action Center makes it easy for people to communicate with their elected representatives via e-mail, regular mail or fax. Sample letters, fact sheets and contact information have been prepared for people to take action on important legislative issues regarding infants, children, adults and families. The Action Center has it all. Visit The Action Center at: www.TheArc.org
PARTNERING WITH THE ARC OF THE UNITED STATES
The Arc of Illinois continues to be very active with our national partner, The Arc of the United States. Last year we participated in Leadership Training, NCEARC Summer Training and The Arc’s Governmental Affairs Seminar in Washington D.C.
Nancy Webster, a past president of The Arc of Illinois, is a member of the Board of Directors of The Arc of the United States. Tony Paulauski is the current Chairperson of the State Executives of The Arc.
THE STATE BUDGET
This year proved to be one of the toughest budget battles we have ever been involved in. There were some victories for disability advocates including a limited Developmental Disabilities Dedicated Fund as part of the budget agreement. The fund reflects the intent of the Memorandum of Understanding signed by the Governor’s Office and Chairperson of the House Fee-For-Service Committee Barbara Flynn Currie. While this fund does not require 100% of new Medicaid match be placed in it, it does require a minimum of one third of the new Medicaid match be placed in the DD Dedicated Fund.
Here is a summary of how we faired in this new state budget.
The “Do The Right Thing” Coalition began this session with an aggressive legislative agenda with a $163 million comprehensive appropriations package as our goal. We introduced this appropriation bill in anticipation of a possible expansion of gambling, an income tax increase or the push for new Medicaid funds. The coalition felt it was important to have a legislative package that listed our needs in case any new revenues became a reality.
As you well know, that was not to be. In the end, budget cuts up to 6% (4% cuts, 2% reserve) were how this state budget was balanced. Also, the push for new Medicaid match did prevail to our advantage.
Let’s look at the outcomes of this budget.
1. No cuts. No reserve. This proved to be a huge agreement that we reached in mid-May with the Administration. Other human services did not fair so well with cuts up to 6%. A 6% cut to the developmental disability system would have amounted to about $72 million.
2. Advance & Reconcile was worked out to avoid major cash flow problems for organizations supporting individuals with disabilities. The cost of this is estimated at $45 million.
3. Non-emergency CILA. $3 million new dollars were added to the budget for non-emergency CILA as part of our agreement with the Governor’s office. We anticipate that about 60 new individuals can be served.
4. New Family Support. $500,000 was added to the budget, also part of our agreement with the Governor’s office.
5. Emergency CILA. $6 million for emergency CILA (120 individuals) and annualization of last year’s CILA appropriation.
6. Lekotek. $600,000 was restored to continue to fund Lekotek in Illinois.
7. Supported Employment. $2.5 million was cut for supported employment in the DOR’s budget.
8. Home Services. $54 million new remains in the budget to serve about 200 new individuals per month in the Home Services program. This is an entitlement program.
9. Lincoln. $1 million was added to keep the plant open at Lincoln to be a part of this budget.
The conversion to a fee-for-service system will continue to have bumps in the road, the major bump being loss of cash flow to community providers. I think we can work this one out but only time will tell. I do believe that in the long run the conversion will benefit everyone - people with disabilities and organizations providing important supports.
I also want to point out some of the non-appropriation items that will benefit the community system.
1. Services and resources for individuals will be portable.
2. Establishment of a limited Dedicated Fund for Developmental Disabilities.
3. Agreement that a minimum of 1/3rd of the new Medicaid funds will be placed into the dedicated fund for the expansion and enhancement of developmental disabilities services/supports, more as determined by need.
4. The Governor’s office agreed to issue a request for proposal for a Service Cost Analysis for Developmental Disabilities. A part of this analysis will be a comparison of Illinois to other similar states.
5. Persons not eligible for Medicaid will continue to be served at the same rates as eligible individuals.
6. The fee-for-service conversion will promote provider sustainability.
While we did not get the cost of doing business increase that is so desperately needed, there is still a remote possibility for a COLA and some further service expansion. A proposal for a hospital assessment is in Washington waiting for approval by CMS. If approved, $40 million of that assessment is designated to come into the developmental disabilities system. I expect the assessment to be approved or disapproved in the late fall.
Mainly because of the conversion to fee-for-service and the important House hearing on this conversion, disability services once again were highlighted in the halls of government. We have many friends in the General Assembly, the Governor’s office and the Department of Human Services. You have done an excellent job educating our friends on our issues and keeping them updated. Your advocacy has been critical in avoiding devastating cuts to disability services/ supports.
Thank you and well done.
For me, I know we avoided a major “bullet” in the end, but the needs of individuals with developmental disabilities
and their families are not addressed in this budget.
The problem in Illinois is not a bloated bureaucracy in Springfield. Simply stated, we need more resources for all of human services and education in Illinois. Public officials need to support an increase in the income tax or otherwise we are in for more of the same cuts the next few years. We need their leadership. We need it now.
ARC BOARD OF DIRECTORS
The Arc of Illinois is pleased to have great advocates on our Board of Directors. They include:
Lorraine McCormick, President
Jacki Neil Boss, Vice-President
Earl Loschen, M.D., Treasurer
Beth Lacey, Secretary
Laura Anderson, John Applen, Carol Bachhuber, Lisa Bantle Kienzle, Diana Braun, Kathy Conour, Eugenia Curry, Therese Devine, Debra Folta, Corey Graves, Julia Grounds, Jan Hem, JoAnn Herzberger, Patrick Lee, Randall Ramey, Brian Rubin, Tom Ryan, Susy Woods, Jim Bown, Past President, Joe Straka, Ph.D., ICEARC President
Two Arc Board Members retired this year: Lynda Atherton & Keith Witt. We appreciate their service!
ARC STAFF
The Arc of Illinois is blessed with a dedicated staff including:
Tony Paulauski, Executive Director; Janet Donahue, Development Director; Phil Milsk, Governmental Affairs Consultant; Mike Kaminsky, IL Life Span Project Director; Mary Lynne Paris, Office Manager; Cindi Swanson, Project Assistant IL Life Span; Deb Fornoff, Project Assistant IL Life Span; Faye Manaster, Research/Policy Analyst; Marian Alcala, Consumer Stipend Advocate; Linda Olenjnik, Administrative Assistant; Irene Meyer, Administrative Assistant; and Patricia Cooper, Training Assistant.
MAJOR FUNDERS
Community Health Charities
Robert R McCormick Tribune Foundation
Illinois Council on Developmental Disabilities
REVENUES AND EXPENSES FY 2004
Income $902,016
Expenses $854,633
Excess Revenue over
Expenses $ 47,383
Net Assets
FY 2004 $278,576
IN SUMMARY
This has been a great year for The Arc of Illinois and we have made good progress. Yet, making progress does not reflect where we should be in Illinois when it comes to providing important supports/services to individuals with disabilities and their families.
According to “The State of the States in Developmental Disabilities” Illinois continues to rank 47th when ranked with other states regarding spending allocated for community services.
The important task before The Arc and our partners in advocacy is to move the Illinois system to a system that is family friendly. A system that does everything it can to support all children in their homes and all adults in their communities. We will not be satisfied with the institutional systems we have in place here in Illinois. We must move to an inclusive community system that values the diversity of the individuals we are here to support and serve in our schools, in the workplace, everywhere. This is our mission and we shall overcome!
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