Winter 2001 Newsletter

Bridget Brown, A Young Advocate! Bridget Brown, a cool and sophisticated 14-year-old with Down syndrome, is already a seasoned advocate! Before Bridget went to Springfield on November 29 to deliver cookies to Governor Ryan, Secretary Linda Renee Baker, and all 177 Illinois legislators, Bridget sent a personal, heartfelt letter to Governor Ryan. She asked Governor Ryan to help make a difference in the lives of people with disabilities, to “Please care.” She told Governor Ryan about herself and told him that she speaks with a clear voice. She told him of friends who are unable to speak for themselves who really need the support of those of us who can. Bridget knows that she can make a difference herself and expects no less from the policymakers in our state.

Bridget was one of the many Family Support Network members who spent hours baking November 29^th delivery to Governor Ryan, Secretary Baker and the rest of the Illinois legislators. Members of the Family Support Network came through – as always – with dozens and dozens of cookies and plenty of volunteers to package and deliver them. Linda Picchi’s daughter’s cooking class made several dozen cookies for us. Jean Amico, her son Dominique, and her mother Grace made the trip from north of Chicago to help with the delivery. Several people left their jobs to come and help for a few hours. These are just a few examples of the responses that we received to our pleas for assistance from the members of the Family Support Network. We are truly grateful to everyone who contributed to the success of the cookie delivery effort! We had a wonderful, productive day!

Of course, our message accompanied every plate of cookies. We thanked policymakers for their past support of the Family Assistance and Home-Based Support Services Programs, but reminded them that there are still 4,000 adults and families waiting.

Our campaign is still in progress! If you haven’t already sent your letters to Governor Ryan and Secretary Baker, please do so now! You’ll find more information in the next article. Ask your friends and fellow advocates to help too! We’ve shared our stories and concerns over the last few years and our policymakers have listened! Keep up the good work everyone!

Pictured below are some of the Family Support Network members who helped deliver cookies to Governor Ryan, Secretary Baker, and the Illinois legislators on November 29.

Increased enrollment in the Family Assistance and Home-Based Support Services Programs!

If you need more information, contact the Family Support Network at 309-693-8981 or e-mail us at CharlotteCronin@home.com.

The FSN Presents

6 Saturday One-Day Conferences

Do You Have a Disability? Do You Love Someone With a Disability?

Are You Confused and Frustrated Trying to Find Supports?

Plan to attend one of the upcoming downstate conferences on Family Support! The conferences are designed to teach participants what good individual and family support should look like, what family support looks like in Illinois, and how we can work together to improve family support in Illinois.

The conferences will be free and lunch will be provided. Conferences will run from 9:00 a.m. to 3:30 p.m. Please share this information with your friends and organizations to which you belong that support people with disabilities.

The only people truly qualified to change the systems that affect us is “us” – people with disabilities and families of people with disabilities. Please join us!

January 20, 2001

St. Vincent Memorial Hospital

Taylorville, IL

February 17, 2001

Urbana Civic Center

Urbana, IL

March 10, 2001

John A. Logan College

Carterville, IL

March 24, 2001

Splash City Water Park

Community Room

Collinsville, IL

April 21, 2001

Carl Sandburg Mall

Community Room

Galesburg, IL

May 5, 2001

Ogle County Farm Bureau

Oregon, IL

All conferences are from 9:00 a.m. to 3:30 a.m. To register or for more information please contact: Charlotte Cronin, The Family Support Network, 5739 W. Martindale Lane, Peoria, IL 61615 Phone: 309-693-8981 E-mail: CharlotteCronin@home.com

Computer Bank is a not-for-profit, community-based initiative created to provide computers for children who experience learning challenges and come from homes with limited income. An all-volunteer effort, Computer Bank reconditions and upgrades used personal computers donated by private individuals and corporate sponsors. The computers are then distributed to families that meet the criteria for participation in the program. Computer Bank volunteers believe that children who lack access to computers and today’s technology will be at a severe disadvantage in school and eventually the workplace.

The Computer Bank operates from the First Presbyterian Church in Springfield. There are no specific boundaries for participation, but families must provide documentation of their child’s learning challenge in the form of an Individual Educational Plan from their school or a letter from their teacher. Families must also attend a Computer Bank orientation if they qualify for participation.

Computer Bank is in need of the following donations: Windows 95 or 98 licenses, educational software on 3.5 diskettes, Pentium and 486 computers, monitors, desk/laser jet printers and, of course, financial donations to purchase educational software! For more information, please contact the Computer Bank at 217-528-4311.

Finding Child Care For Kids With Disabilities

Daycare… many of us don’t even try. Sometimes we devise such elaborate work schedules that we never see our spouses. We lose track of our careers and what might have been because we can’t find childcare that we can trust or a daycare that will take our children. Some single parents go on welfare.

This spring, the Illinois State budget included $655 million for childcare in Illinois. This funding was to address the childcare issues of parents going back to work after being on welfare, part of the new welfare reform initiatives. What assurances do we have that families with children with disabilities have access to that funding?

Charlotte Cronin, Executive Director of the Family Support Network, has recently had the opportunity to bring this issue to the attention of Secretary Linda Renee Baker of the Department of Human Services on two different occasions. This spring, in an effort to bring thoughtful information to Secretary Baker about the barriers that families face, we conducted an informal (and unscientific) survey of our FSN members with e-mail. This is what we learned.

An overwhelming number of families indicated that they could not find day care for their child with a disability. Providers learned of the disability and then claimed they had no space, or took the child initially and then decided they didn’t have the resources. Many day cares refused to take children who were not potty trained. Many families resorted to using relatives and oters hired in-home help at huge expense.

One third to one half of the respondents indicated that they were unable to work primarily due to problems finding day care. Others were uncomfortable leaving a medically involved child with a day care provider. Many reported working part-time at jobs for which they were over-qualified. Respondents often reported that their families suffered financially due to their inability to work full-time. Cost of day care prevented many from seeking part-time jobs.

The majority indicated they could only work part-time because of the lack of childcare. They reported refusing promotions that required more time away from their children and less flexibility for time off that their child required for doctor’s appointments, etc.

More than half indicated that they had older siblings help in some way with childcare. Many reported that their older children had to give up activities at school to do so. Even those families that do not have older children baby-sit reported that the older children were still impacted by lack of childcare. Families spend a great deal of their income on childcare for the child with a disability and this can greatly impact the rest of the family. Parents are also often unable to attend the activities of the siblings because someone has to stay home to take care of the child with a disability.

Overall, many families feel that they are doing their best to try to find daycare that is simply not available to their children with disabilities. The financial and emotional expense to families in dealing with this issue is enormous.

A Note From Charlotte About Child Care

Every family that includes a child with a disability knows the difficulty of finding good child care. Every family knows that the most basic family support is a roof over our heads and food on our tables. If we can’t work, how can we provide these?

Thus began a year of educating myself on these issues. In the process I have met some wonderful people, including Senator Christine Radogno, Randy Valenti, Associate Director of the Office of Child Care and Family Services, Kathy Rogy from the Childcare Coalition and Bob Brocken.

Bob Brocken oversaw the childcare subsidy and inclusion training programs for DHS and was a great advocate for people with disabilities in every age group. We are sorry to announce that we received the sad news that Bob passed away suddenly of a heart attack on December 15. We’re going to miss you, Bob!

Tom Berkshire, former Executive Director of Easter Seals of Illinois, writes the following article for us. Tom has been successful at designing many inclusive daycares around the state of Illinois, starting with the premise that 10% of the children served in those daycares will have disabilities. Tom is now working as a private consultant who assists local families and organizations in developing inclusive childcare. He can be reached at 217-793-9057.

As you read the following article, remember that these programs are focused on children in the age groups typically needing childcare, in other words, zero to five years old.

Deborah Smith* has two children, 5 year old Adrian and 3 year old Lorraine. Both have megawatt smiles that light up their faces. Both children have had trouble being included in any childcare because one has significant motor delay and the other has trouble with emotional control.

The Americans With Disabilities Act says a childcare center cannot turn away a child with a disability unless the child's presence poses "a direct threat to the health and safety of others" or requires a "fundamental alteration in the center's program.' According the U.S. Justice Department, those guidelines mean that a center doesn't have to take a disabled child if it would be forced to hire an extra worker. But if the child's needs could be accommodated without bringing additional training to existing staff members, the child must be admitted.

It is nice to know that the Department of Human Services in Illinois has been taking some steps to help increase the availability of inclusive childcare throughout the state. Just after Thanksgiving, Charlotte Cronin and Tom Berkshire met with Senator Radogno (R -24 LaGrange), Dan Miller, and Randy Valenti to get an update on their progress. Dan Miller is Assistant Secretary of the Illinois Department of Human Services (DHS) and Randy Valenti oversees all the childcare programs of the department. Senator Radogno is a member of the Illinois MAP, a group organized to increase inclusive childcare. In that meeting they noted that the Department has been increasingly proactive in assisting centers to increase the availability of inclusive childcare.

DHS has addressed the issue in three ways. First, a grant to the Illinois Network of Child Care Resource & Referral Agencies (INCCRA) was provided to train staff in all 16 offices in the state so that they, in turn, can train childcare directors and staff. This training focuses on childcare for the child with a disability and how they can be included in the classroom or in the childcare home setting. A call to your local Agency (see the yellow pages) or a look on their Website (http://www.aces.uius.edu/~ILCare/) will provide you with more localized information.

In addition to this new training program, DHS operates one of the largest childcare subsidy programs in the United States. The program is directed toward lower income families and families on TANF and their children and has two approaches to addressing the increased availability of childcare to families with special needs children. First, it currently has a demonstration program providing a negotiated subsidy for add-ons related to the specific needs of the child and the childcare center's ability to help the child with development issues. A childcare provider may receive more than the standard rate to enhance the care for DHS subsidized children. Second, the Department has provided quality enhancement grants to centers that make a commitment to serving children in an inclusive setting. Again, by the nature of the appropriation, this resource is directed toward lower income families. But the feeling is that by helping a center learn how to operate in an inclusive mode, they will be willing to provide services to all children.

In order to increase the inclusive childcare in your area, what else should you do? We recommend you talk to your local agencies that provide early intervention services or other programs funded by the Department of Human Services. Across Illinois many have been instrumental in helping lead the development of inclusive childcare in new and existing centers. While some have been slow to move in this direction because of their reluctance to accept inclusive programming as the way of the future, your call may help change some local attitudes and bring better developmental services to children in your area.

In a recent book, Mental Retardation in the 21st Century, M. Wehmeyer and J. Patton, Editors, it is noted, "What, then can be done to alter these prior expectations in order to ensure a great degree of inclusion during the early childhood years for children with disabilities? Public education efforts and targeted campaigns are likely to have only limited impact unless they occur on a massive scale - unlikely prospect. But inclusive childcare may provide the types of frequent and personal experience so needed to modify long-standing attitudes and beliefs. In fact, childcare, by beginning during infancy or the toddler years has the potential to connect families, not only children. A clear challenge for the future is to create a quality system of inclusive childcare, one that considers the full spectrum of out-of-home childcare placements and that creates as early as possible a sense of belonging to the community for all children and families."

In our conversations with the leadership of the Department of Human Services, we felt that they wanted to help meet this challenge.

* Ms Smith is a family head that may be just like you. While she and her children are an amalgam of real situations put in this context of article, we thought you might relate to her situation.

FSN Videos and Pamphlets Now Available!

The Family Support Network has created two new informational items available to help you explain and/or understand Family Support issues.

First, we have produced a video that explains how family support, particularly the Family Assistance and Home-Based Support Services Programs, has been important to Illinois families. The video is perfect for sharing with groups and organizations. A donation of $5 per video is appreciated.

We also have an updated 12 page pamphlet that describes and explains Family Support. This would be perfect to use as a handout when you’re showing our video! For copies of either the video or brochure, please contact the FSN at 309-693-8981 or e-mail us at CharlotteCronin@home.com. We have plenty of copies. So, please request as many as you can use! Thanks!

“I Do Live A Full Life …”

A Home-Based Support Services Success Story

Editors Note: The following story is part of an ongoing series we like to include as often as we can. These are stories about how the Family Assistance and Home-Based Support Services Programs have impacted individuals with disabilities and/or mental illness and their families. If you have a story you would like to share we would be honored to include it. Please contact Charlotte Cronin at 309-693-8981. This very real woman is from downstate Illinois who has asked that her name not be used.

Some friends and I went on a canoe trip this weekend and I was thinking about how far I’ve come since I first got state-paid skills trainers from the Home-Based Support Services Program (HBSSP) in 1990.

I’ve learned to be quiet and think about what to do and say in a group as opposed to just blurting out something. I’ve learned to say a little prayer in my heart that God and Jesus would give me direction. I’ve learned to accept the need to take medication to level out my moods. I’ve learned to use community and public facilities and go outside of my strict daily routine without getting unbearably nervous.

On the canoe trip I was able to be responsible enough and self-directed enough to watch the group campsite and occupy myself with reading while other campers went out on the river in canoes. I have enough initiative to be self-directed and bring my own entertainment. I can think and plan ahead.

I packed personal items, reading materials, and my snacks and kept them in my own space during the travel trip. I did not just dump all of my camping supplies on the other campers but kept my own stuff under my own management.

I did not have a screaming fit because things did not go the way my nervous system needed them to go as I have done before.

When I was 11 to 22, I continually heard things (accusations) in my head. This is a form of schizophrenia, a mental illness. I was terrified that someone important to me would find out how bad a person I was. I “acted out” because I was afraid to verbalize. When I was older I had to learn to verbalize: to talk about my inner life, my fears, hopes, and dreams. I had missed out on this “learning to verbalize”. Speaking up and speaking out is something I continue to learn how and when to do. I am learning to trust people not to put me down as I learn to talk about these things with my skills trainer and friends.

Some of these things I’ve shared with you might be like your own life or the life of a loved one. You can learn that you are not alone.

National Association for Mental Illness and the HBSSP are both helpful programs. May the Lord Jesus guide you as He has guided me so you can also have friends and know what it is like to be cared about and have good, happy times in your life. We say in the church that In Christ you live a full life. I do live a full life with other people’s help and am no longer overwhelmed by too much for one person to do.

Family Opportunity Act of 2000 Co-Sponsors

The last session of Congress concluded just after the November elections without passing the Family Opportunity Act of 2000. We made tremendous strides towards passing this legislation and came very close. It will be reintroduced in the new Congress just installed. Thank you for your efforts!

Listed below are the U.S. Senators and Congressmen from Illinois who signed on as co-sponsors. When FSN members visited Ray LaHood, he was not even aware of its existence and signed on immediately. It was an easy and fun visit. Have you contacted your Congressman? Please do so today! Call us if you need help!

Congressmen
Bobby Rush
Rod Blagojevich
Janice Schakowsky
Jerry Costello
Ray LaHood
John Shimkus

NOT SO STUPID QUESTION TIME

What is Olmstead and Why Should I Care?

We've all heard the term "Olmstead" by now. Seems like a lot of people are excited about it. But what does it mean to us and why should we care?

Two Georgia women, both with mental retardation and mental illness, wanted to receive services in the community rather than the state psychiatric facility where Georgia wanted to serve them. The women claimed that Georgia unnecessarily institutionalized and segregated them in a mental hospital rather than providing services to them in an appropriate, integrated setting.

In June 1999, the United States Supreme Court said in their ruling on this case that Americans can no longer be forced into nursing homes or institutions without good reason. Because of this decision, states must now allow Medicaid dollars to be used to support individuals who qualify in their own homes and communities.

In the past, states were required to provide services in nursing homes and institutions if they were receiving Medicaid dollars. There was no requirement to provide services in homes and community settings where many people prefer to receive supports. When home and community-based supports were offered, people requesting these services often had numerous, difficult qualifications to meet in order to receive them. Also, limited funding was made available for these home and community-based services whereas there were generally no limitations for spending in the nursing home and institutional settings.

In Illinois, adults with developmental disabilities or mental retardation who meet the requirements of need have an “entitlement” to receive services in an Intermediate Care Facility for the Mentally Retarded (ICF/MR). ICF/MRs are usually large residential care facilities of 16 people or over. Interestingly enough, those same individuals do not have an “entitlement” to receive those same services in the waiver programs that Illinois runs that are actually more cost effective and less restrictive, such as group homes and family homes. Could “Olmstead” mean that services in these settings could also be considered an entitlement? The answer to this question may be what Olmstead means to us.

States are now wrestling with the consequences of the Olmstead decision. To learn more about Olmstead, see www.freedomclearinghouse.org. A lawsuit stemming from this decision has also been filed in Illinois. To learn more about this, see www.illinoisclassaction.com. To learn about what's happening with Olmstead in Illinois, check out the DHS website at www.state.il.us/agency/dhs/olmweb.html.

*Much of the information (but, not all) for this article is from the Freedom Clearinghouse website.

This is such an odd job. I am just a mom, trying to fit this “advocacy stuff” in between meals, soccer, homework and laundry. Sometimes it gets so overwhelming. What am I doing? Is this the best choice for my family? Is all this “advocacy stuff” shortchanging them? It’s easy to get lonely in this basement office.

Then we started this $30,000 campaign. The letters started arriving and the checks started falling out. Each one felt like a personal vote to keep on going, that we are doing the right thing. And that the work we do is important.

I have had so much fun reading your notes and knowing that the Family Support Network has made a difference in your lives! That's what this is all about. It feels so great to know that you believe in what we're working so hard to do. Each and every time that we ask members of the Family Support Network for help – whether it's writing letters, calling policy-makers, or even contributing money - you come through for us! Thank you for your amazing dedication and we promise to continue to do our best to keep you informed on the issues that make a difference to all of us!

But this fundraising isn’t just about votes of confidence. We need to replace funding from the Illinois Council on Developmental Disabilities that will run out in September. This is the money that pays for this newsletter, covers our staff salaries, and pays the phone bill and our traveling expenses. If we can’t replace it, we might not be here next year.

We still have a long way to go to reach our goal of $30,000. We have received just short of $2000 in our “kickoff.” We're off to a great start and we're very grateful!

We’ve said it before, and we’ll say it again, “We can grumble and groan. We can shake our fists at the sky and wonder about the priorities of the state of Illinois. But, if we do nothing, who do we have to blame? Only ourselves.”

Family Support Network of Illinois

Family Opportunity Act of 2000 Co-Sponsors

Every page on this web is Bobby approved.