Family Support Network Members:
It’s always so surprising to hear that you have been seriously misinterpreted or misunderstood.
And that is what I discovered today.
I learned today that “some folks” believe that I believe that the State of Illinois should increase enrollment in the Home-Based Support Services Programs at the expense of new enrollment in Community Integrated Living Arrangements (CILA).
In other words, “they” think that I think that folks who are in need of funding for services in group homes should be pressured to accept Home-Based Support Services Programs when what they need are residential services or that people should be given Home-Based Support Services to the exclusion of people needing residential services.
AIYEEEEEE!! They can’t be more wrong. That so breaks my heart. My son, Daniel, lives in a group home and receives CILA services! Mike and I simply cannot provide him what he needs in our family home. CILA services must be strong and available to all who need them…. before they are in crisis.
So I want to be clear. This is what I believe in and for which I advocate:
· Families supporting children with disabilities in their homes should have desperately needed supports and services so their children can grow up to have vibrant, happy lives.
· Adults with disabilities should be able to live the same vibrant, happy lives in their family homes with the same desperately needed supports and services, as long as that is their choice.
· Adults with disabilities should be able to move to other community settings (such as group homes or their own apartments) while their families are strong and healthy enough to help them make that transition successfully.
· Those community settings should be close to their family and friends.
· The providers of those services should be compensated at for the real cost of quality services.
· All those services should person directed allowing the individual to choose how and where they will receive them.
Service Plans should start with the dreams and goals of the person with a disability.
Only after the dreams, goals, strengths and challenges of the person with a disability have been addressed should the discussion begin about where that person should receive services.
Whether we want to admit it or not, services in Illinois today are based on where a person is “willing” to live. If their desire is to live at “home” with mom and dad, they can only a capped amount of funding through the Home-Based Support Services Programs. If they need more they have to be “willing” to move into a residential setting, often far from home. If they need even more than that, they often must be “willing” move into even MORE restrictive settings such as a State Operated Developmental Center.
Our system is seriously dehydrated. People’s lives have become tiny. They are forced to live often hours away from their loved ones. Our providers receive a fraction of the funding they need to do the quality job they want to do.
I say it is time to get mad and get mobilized, not divide ourselves for the conquering. NO ONE should receive services on the back of someone who is not, no matter what the community setting is.
We have to work on all of this at once.
We must remember that every time someone receives that magic “Award Letter”, thousands of others have not.
Let’s remember that PUNS tells us that there are almost 13,000 people in Illinois still needing services. (http://www.dhs.state.il.us/OneNetLibrary/27897/documents/DD%20Reports/Overall%20Summary%20of%20Support%20Needed.pdf)
No matter how we cut that pie there will be thousands of wonderful people still desperately needing services, no matter what the setting is.
We (and I mean YOU as well) have an INVESTMENT and an OBLIGATION to work for improved and increased services in every community setting.
Whether you or your loved one is already receiving services or not, we must work together to make the world the place we want for people with disabilities in Illinois.
What can you do today? Call you legislators today in support of SB 3022!
Identify your legislators at www.ilga.gov.
SB 3022 was the focus of our Rally at the Capitol last week. It supports the agendas of both the “Do the Right Thing Coalition” and the “No Place Like Home” Coalition. The press packet is online at Rally Day Press Packet.
And Tomorrow is our last “Listening Session” with Director Lilia Teninty. It’s in Mt. Vernon!
For all you downstaters who are always complaining that nothing comes to where you live, here it is your opportunity to tell Director Teninty how services are working for you. What works well? What doesn’t? Make some suggestions for improvements. Be there or be square!
April 23rd, 6:30pm, Mt. Vernon District 80 Primary Center, 401 North 30th Street, Mt. Vernon, IL
And an important Opportunity for all of us to comment:
Director Teninty has released documents on the new selection processes through PUNS. She needs your comments by May 30. You can e-mail them to .
.
We have them on our website. You can just click on the following links:
New PUNS Selection Information,
Community Emergency Criteria (Children)
Community Emergency Criteria (Adults)
I am so proud to know all of you and consider you my friends. I want to be clear that I consider good “family support” to include quality residential supports to all that need them and CLOSE to family and friends. That is the world for which we need to work.
Charlotte
FW: Worrying About All Services - Chicago N
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Sent - 9:47:27 PM on 4/22/2008
-John Kramer
Vice President
Supporting Illinois Brothers and Sisters
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