I have been blessed to know and work with Katherine. I only hope she will rejoin us soon.
Tony
An Open Letter to Governor Rauner and all Illinois State Legislators
Dear Governor Rauner and Members of the Illinois Senate and Illinois House of
Representatives,
As we enter a second month without a state budget, I have never felt so ashamed to live
in Illinois and I have never felt so scared for the future.
Let me introduce myself. I am a currently unemployed citizen whose job ended when the
funding for my program stopped. I was the Director of the Family Transition Project, a part
of the Arc of Illinois’s Illinois Life Span Grant, which was not renewed at the end of this
fiscal year. My program was a resource for individuals and families whose loved ones
were considering making the transition from a state operated center for the
developmentally disabled (SODC) to a home in the community. I talked to a couple of
hundred families over the years and was in the process of reaching out to more. Even
families who were drastically opposed to community living for their loved ones were able
to relate to me because I am the guardian of a sister, Margaret Doering, who lived for
sixty-three years of her life in SODC’s and has now lived in a CILA (Community Integrated
Living Arrangement) home very successfully for the last seven years. I am also a former
State of Illinois employee who worked at The William A. Howe Center in Tinley Park for
eleven years. There are very few of the pros and cons of large institutions for the
developmentally disabled that I haven’t heard over the years, but I always listen to
families because I understand where they are coming from. Change is traumatic. It is
often so for our loved ones. I believe that the rewards of community living justify making
the move and I do everything I can to support families involved in this process. I am not a
social worker or case worker, just a family member who knows how lonely and
discouraging the experience can be until the right arrangement is made that most fully
supports the needs of their loved ones.
Of course I would like to see my program’s grant renewed. But I am writing today because
I am also a guardian. My sister Margaret is able to live in a real home with her own room
and her own possessions in a regular neighborhood surrounded by a diverse population
of citizens with all kinds of needs and hopes and dreams, just as the rest of the citizens
of this state do, but she has some specialized needs. She is non-verbal and she mainly
expresses herself through behavior. People who don’t know her well don’t understand that
her loud humming means she’s not feeling well. Even staff who know her well struggle at
times to understand why she’s uncomfortable. They have to puree much of her food and
assist her with eating. She needs 24-hour supervision and takes medications that have to
be administered. She has some medical conditions that need to be monitored. She’s
seventy-two years old and is retired, but she needs help with all activities of daily life and
needs somewhere to go during the day. She attends a “bridge” program at her community
provider’s workshop, specially designed for senior citizens to be a comfortable hangout
with some fun low-key activities and staff who keep her safe. All of these needs cost money.
Ironically, they cost far far less than it cost her to live in a state operated developmental
center. Yet the services that make her life work are threatened by the current lack of a
budget and the threat of future budget cuts when there finally is a budget. Every time I
receive a call from her provider I have a sick feeling in the pit of my stomach because I am
so afraid that they will tell me that they have to cut some of her services or move her into
a more institutional setting or that they will be unable to care for her. No one at her agency
wants to do this. Staff who care for her certainly don’t do so because it’s a highly paid job.
It’s not. They are there because they enjoy the fulfillment of working with my sister and her
peers.
I know from many families I talk to that I’m not alone in this fear. I worry that you, Governor
Rauner, and our state legislators fail to understand the very narrow margin that keeps our
loved ones from falling out of the safety net. We families of Illinois make do with remarkably
little in the way of support. Individuals with intellectual and developmental disabilities in this
state craft meaningful lives with small increments of help and with a lot of courage and hope.
Every day that passes without a budget threatens the existence of the agencies that provide
supports for our loved ones. I wish you could understand the desperation that individuals
and families feel. Please don’t let us down. Please approve a reasonable budget that allows
our citizens of Illinois to thrive and make positive contributions to the state we love.
Sincerely,
Katherine D. Hamann
Sister of Margaret C. Doering
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org
