Family
Support Network
of Illinois
Family
Support Network
of Illinois
For a PDF version click HERE
We're Putting Together a Phone Tree . . . And We Need Your Help!
The Statewide Centralized Information System - Illinois Life Span Project
A House for All Children - A Great Resource for Designing an Accessible Home!
Thursday, May 30th, the Family Support Network (FSN) received the hard news that despite the tremendous efforts of advocates and some very committed policymakers, the Family Assistance and Home-Based Support Services Programs (FA/HBSSP) had not been slated to receive increased funding in the State of Illinois Fiscal 2002 budget.
Though funding does become available from time to time through other resources, this means it is unlikely that new names will be selected for the programs over the next 12 months.
The initiative to increase funding to the FA/HBSSP began in December when the FSN launched its “Cookie Campaign”. Plates and platters of cookies were delivered to Governor Ryan, DHS Secretary Linda Renée Baker and all 177 legislators. We know these same folks also received hundreds of letters mailed by our members.
The Family Support Network received its first setback in February when Governor George Ryan did not include an increase in the FA/HBSSP in his Budget Address to the Illinois General Assembly. This speech is one of many steps that take place every year as the State of Illinois budget is developed. The budget then has to be passed into law by our Illinois State Representatives and Senators and signed by the Governor to be implemented on July 1. The budget that has just been passed by the Illinois General Assembly will be referred to as the Fiscal 2002 budget as that is the year in which it ends.
The FSN struggled to develop a new strategy. With as many as 5000 adults and families in the “potential applicants pool”, quitting was not an option. Then, House Minority Leader Lee Daniels announced his initiative for $300 million new dollars to support people with disabilities. Some of Leader Daniel’s proposal, such as the $1/hr. increase for direct-care workers, was already in the Governor’s proposed budget.
Most importantly for us, Leader Daniels included $7 million additional dollars in that initiative for increased funding for the Family Assistance and Home-Based Support Services Programs!!
Leader Daniels, who is the
father of an adult daughter who has developmental disabilities, is also the
“father” of the Family Assistance and Home-Based Support Services Programs,
responsible for the legislation that originally brought the programs into
existence in 1989. He has been a leader in advocating for programs that support
individuals with disabilities and their families. Thanks, Leader Daniels!
The picture at right is House Republican Leader Lee Daniels and his daughter, Laurie.
In April, Charlotte Cronin of the Family Support Network and Representative Rick Winkel met with Leader Daniels to find out how the FSN could support his efforts. He asked us to contact our state legislators, asking them to sign letters of support to their caucus leaders and the Governor indicating that the $7 million increase for the FA/HBSSP programs is a priority and should be included in the Fiscal 2002 budget. Thus, a campaign to educate policymakers about the importance of this increased funding began. Charlotte traveled to the Capitol from Peoria six different days over two weeks to distribute information and gather signatures. Via e-mail, we collaborated with you, our membership, asking you to contact your legislators in anticipation of her visit. It was a whirlwind and an exhausting two weeks!
Big thanks to Representatives Rick Winkel from Champaign-Urbana and Mike Smith from Canton who carried the letters to their colleagues on the House floor and secured signatures!
The budget bill that was finally passed is the result of negotiations between representatives of the four caucus leaders and the Governor’s office. Every dollar spent by the state of Illinois over the next year has been budgeted for in this one law, whether it is for services for people with disabilities, school funding, potholes, stadiums or museums.
The Caucus leaders represent the Republican and Democratic leadership in the Illinois House and Senate. They are Senate President Pate Philip, Senate Minority Leader Emily Jones, Jr., House Speaker Michael Madigan, and House Minority Leader Lee Daniels.
The disability community did have one wonderful piece of news to celebrate. The $1/hr. increase for direct-care workers and the 2% cost of living increase were included in the final budget. This funding is critical to the provision of quality care as providers of direct care services to people with developmental disabilities are often paid less than workers at McDonald’s!
One big lesson learned this spring has been the importance of building relationships with our local legislators when they are in their home districts.
Even though our goals for the FA/HBSSP programs haven’t been realized this year, we must not forget our past successes. We have great power!
We need to continue to let our policymakers know that the Family Assistance and Home-Based Support Services Programs are important to us and that they have been very successful in supporting people with disabilities and their families in Illinois. Call, visit, or write your local legislator. Tell him or her your story. There are over 5000 adults and families waiting for these services. Remember; “There’s No Place Like Home!!”
Getting health care for your child that is appropriate, timely, and affordable is difficult. Sometimes insurance companies won't cover certain diagnoses or children reach their lifetime caps too quickly or quality equipment isn't available through your health plan. These are just some examples of the problems families face every day while trying to do the best for their child.
The Campaign For Better Health Care, which runs the Helpline, is a non-profit organization dedicated to increasing access and quality of health care in Illinois. As a project of that mission, the Children's Health Access Helpline and Storybank works specifically with children's issues in two major ways. First, the Helpline tries to link families with resources and to answer questions about what kind of health care rights they have. The second function of the Helpline is the Storybank. A "storybank" is a collection of stories with a common theme - in this case, stories about children and families having problems accessing quality health care. The stories are kept confidentially in a database where the children's staff at the Campaign for Better Health Care can track trends in the health care system. Stories are also documented so that when legislation comes up related to the problem your family is having, we can get in touch with you and let you know how to get involved. Our staff can tell you who your legislators are and how to go about talking to them. In addition, the media sometimes likes to talk to families that are having problems with the health care system. They know we keep a database of stories and that we can link them to you. However, we will never give out your name or story without your permission.
If you, or someone you know, has had problems getting health care for a child, please call and talk to someone at the Campaign For Better Health Care's Children's Health Access Helpline, toll-free at 1-888-511-0290. Your story is important. By picking up the telephone you can help make a health care system that really works for all of the children of Illinois.
Guidelines
Examined for Home-Based Support Services Program
The Family Assistance and Home-Based Support Services Programs are valued for their flexibility and their ability to address the unique needs of individuals with disabilities and their families. They honor the efforts of people with disabilities and their loved ones who have made the commitment to support them in their homes. These families have made huge investments of time, energy and emotion, often sacrificing career opportunities and, sometimes, marriages. The programs are easy to understand and participants take the lead in designing their service plans. They are not overwhelmed with paper work.
While participants in the Home-Based Support Services program may access up to $19,080 this year, purchases averaged only about $11,000 last year.
Everyone agrees that funding for the program should be used wisely, not only to protect the integrity of the program, but also to allow the participation of the most enrollees possible. Within that context, Melissa Wright, Associate Director of the Office of Developmental Disabilities, initiated a series of meetings to look at those guidelines. Among others, participants in the Home-Based Support Services Trainings and the Family Support Task Force Retreat had the opportunity to review the suggested guidelines.
It is fair to say that discussions were very spirited.
In April, House Leader Lee Daniels hosted a meeting which included DHS Sec. Linda Renée Baker, Assoc. Dir. Wright, members of the Family Support Advisory Council and other advocates, including Charlotte Cronin of the Family Support Network. The outcome of that meeting was the formation of a workgroup to collaborate on the guidelines.
That workgroup met on April 27th and included Melissa Wright, members of her staff, members of Leader Daniels staff, members of the Family Support Advisory Council, and again, other advocates including Ellen McManus, Joanell Voigt and Charlotte Cronin.
The meeting was a real collaboration with all involved working hard to meet the needs of participants in the programs and make them the most effective possible. A lot of creative thinking took place and a number of compromises were made.
Two strategies were considered and finally melded together. Advocates were concerned that the creation of categories of services or items that would not be approved or would be capped at certain dollar levels would remove the flexibility of the programs. On the other hand, Assoc. Director Wright was concerned that Service Facilitators did not feel they were given enough direction as to what appropriate expenditures are.
While categories of service were defined and in some cases capped, an exception process was put into place so that unique situations can be addressed as they arise. Several suggested categories were reworded or broadened to provide more flexibility.
Service Facilitators will now be required to meet the federal requirements as a Qualified Mental Retardation Professional (QMRP) or Mental Health Professionals (MHP) working under the supervision of a Qualified Mental Health Professional (QMHP). Current service facilitators who do not meet the new qualifications will be allowed one year to become fully qualified. Current service facilitators working under the direction of a QMRP or QMHP will be allowed to maintain their current caseloads until they become qualified. Effective July 1, 2001, all new participants to the HBSSP must select from qualified service facilitators.
Service Facilitators will now have to seek approval for purchases over $300. In the past, the limit has been $500. To insure responsiveness, the Department has pledged a goal of an average two-week turn around on all requests.
Another area of concern for both DHS staff and advocates has been the “paperless billing system” which is being implemented to speed up payments to providers of services and supports. Many ideas were generated and are being explored to make this process responsive to the needs of participants.
We do not have space on this website to share the complete guidelines (5 pages!) Please contact the FSN at 309-693-8981 or e-mail us at CharlotteCronin@home.com for more information!On Tuesday, April 24, members of the Family Leadership and Systems Change Project Task Force traveled to the Illinois State Capitol in Springfield to learn about the legislative process and how we, as individuals and members of the Family Support Network, can work to educate and inform policymakers about issues that affect our families and ourselves. We had two action-packed days in Springfield and left with a much clearer understanding of our real power within this system.
Tuesday afternoon, we were able to observe a presentation by the “Institute on Public Policy” to the Senate Appropriations Committee on how the service system for individuals with disabilities in Illinois has developed over time and what the needs of people with disabilities in Illinois are now.
After the Senate Hearing, Jeff Stauter and Steve Marvel of Illinois Association for Rehabilitation Facilities took us on a tour of the Capitol, helping us understand not only the layout of the building, but all sorts of interesting historical details. For instance, did you know that the walls of the Capitol are marble only as high as you can touch them? The rest is plaster painted to look like marble!
Wednesday morning, Jeff and Steve joined us for breakfast and gave us the inside scoop on “Everything We Never Knew We Wanted to Know at the Capitol.”
The group toured the Illinois Assistive Technology Project and learned about the great resources they have to offer. You can learn more about them at http://www.iltech.org/.
At the Capitol, Task Force members met with Rep. Jim Brosnahan, Chair of the newly formed Disabled Community Committee. Rep. Brosnahan shared how this committee came into being and how these issues are of importance to him personally. Later, the Task Force attended a hearing of this committee on issues related to the Olmstead decision. Individuals with disabilities and others gave testimony on their views of life in institutions and in nursing homes as opposed to their own homes and communities and how this has impacted them.
We also had the opportunity to meet with Sen. Steve Rauschenberger, chair of the Senate Appropriations Committee. Senator Rauschenberger shared his insights on how to work with policymakers around issues of importance to our families and us. Senator Rauschenberger has been a great supporter of the Family Support Network and we appreciate his generosity in sharing his time and expertise!
Of course, no trip is complete
without an adventure. Tuesday
night, Tony Kramer decided to take Shakeel Ahmed and Khalid Sabz
wari to see
Lincoln’s Tomb. They got locked
in the cemetery and had to scale the fence to get out!
At right, they re-enact their adventure for us!
We had a wonderful, informative day and a half in Springfield and left energized and ready to continue to work for the supports and services we know are important!
Goal:
Our Families are Supported and Included in Our Communities
The Family Leadership and Systems Change Task Force gathered for its third retreat on April 8 and 9 at Starved Rock Lodge in Utica, Illinois. This was the last in a series of working retreats over a seventeen-month period.
The goal of the Task Force is to learn what good family support should look like, understand what it looks like in Illinois, dream their best dreams for what it should look like and come up with an action plan for making these dreams come true.
The Task Force first met in March of 2000 and set this goal: Our families are supported and included in our communities
Objective
1: All families have equal
access to information and receive coordinated family support services tailored
to their own needs. Action Step:
There will be a central site for distribution of information about
services and supports for families who have members with disabilities.
Objective
2: Collaboration between
schools and communities to allow family support and continuity of services.
Action Step: School personnel are trained on family supports available in
Illinois.
Objective
3: Families have access to
respite when, where, and how they need it. Action Step:
Funding for respite is expanded to increase services and increase
salaries for respite staff.
Objective
4: Funding is attached to individuals and families instead of providers.
Action Step: The Family Assistance
and Home-Based Support Services Program has increased funding to meet the needs
of people on the “potential applicants” list.
Highlights of the weekend included a presentation on “Transition and Burnout” by Patrick Schwartz of National Lewis University in Chicago. Patrick helped us think about what we needed and wanted to make this process work for our loved ones and ourselves.
Bridget Brown, a 14 year old advocate, featured in our last newsletter presented on her advocacy efforts and shared the letter that she wrote to Governor Ryan during the Cookie Campaign in November.
Mark Karner, a self-advocate and member of the Olmstead Task Force discussed Olmstead and its implications in Illinois.
Charlotte shared that the Governor’s budget proposal had included no new funding for the Family Assistance and Home-Based Support Services Programs and discussed our strategy to bring this omission to the attention of Governor Ryan and the rest of the policymakers in Illinois. We had a spirited discussion on proposed changes to the Home-Based Support Services Program and comments were recorded to share with DHS.
Network teams then planned activities for their geographic areas that would further the task force goals over the next several months. Suggestions and/or recommendations for the next grant proposal were also gathered from participants.
Though the charge of the Task Force was officially over in April, the Family Support Network is applying for continuation funding and is confident that the Task Force will have the resources to move forward with the goals that we set in April of 2000!
Our last newsletter featured Bridget Brown, a budding
14-year-old advocate. This is the
letter Bridget wrote to Gov. Ryan. We
all need to speak with Bridget’s clear voice.
Governor George Ryan
207 State House
Springfield, IL
62704
Dear Governor Ryan:
I am Bridget Brown.
I am 14 years old and in Jr. high. I
have Down syndrome and I get help in school sometimes but I am in regular
classes. I have lots of friends who
have disabilities. I have a clear voice and I can speak for them because some of
my friends cannot speak.
Tina is my friend.
She is in a wheelchair and she cannot talk.
Lots of wonderful people help Tina.
Tina is a great friend of mine. I
can help Tina and when I stopped to talk to her she smiled and said “Hi!”
My friends would like to meet you
because they know that you decide about the programs that help people with
disabilities. I have a dream that
people with disabilities should live at home with their families.
I think they should have jobs and have friends.
Sometimes they need help. And I
am there for them and I can stand up for them because I know how important it is
to care about people with disabilities.
Governor Ryan please care for
people with disabilities so they can learn and live wonderful lives. You are
important to all people with disabilities.
You can make a difference and I can make a difference.
Please care!
Sincerely,
Bridget Brown
The
Family Support Network is renewing its effort to create a phone tree.
Phone trees are very effective tools designed to relay time sensitive
information and/or action plans! We
have found a phone tree action to be very valuable when used to follow up a
mailed action alert. While this is
a huge undertaking, we believe an effective phone tree will be critical to our
future successes.
We are in the process of organizing our database into phone tree “cells” and would like to identify phone tree volunteers for each one. These volunteers will be critical in passing information on to the rest of our membership. We will not activate the phone tree except in situations where we feel strongly that the information is critical to our members and that a quick response is important. We will not call on you to do this often or without great consideration! We will attempt to limit each person’s phone list to 10 to 15 people within their home community.
If you believe that this is something that you could do to help the Family Support Network, please call Charlotte at 309-693-8981 or send an e-mail to CharlotteCronin@home.com.
Remember, “We can grumble and groan. We can shake our fists at the sky and bemoan the priorities of the state of Illinois. But, if we do nothing, we have no one to blame but ourselves!” Please help!One
of the goals of the Family Support Systems Change and Leadership Task Force is
that “All families will have equal access to
information and receive coordinated family support services tailored to their
own needs. There will be a central
site for distribution of information about services and supports for families
who have members with disabilities.”
We
are delighted to share that the Arc of Illinois has been selected by the
Illinois Council on Developmental Disabilities for an investment of $1,000,000
over five years to launch a statewide “Illinois Life Span Information and
Advocacy Coordination System,” called the Illinois Life Span Project.
The
Illinois Life Span Project will be a statewide resource that will provide people
of all ages with disabilities, their family members, and professionals with
accurate and up-to-date information and linkages to directly connect to advocacy
resources to maneuver through the systems of services in Illinois.
The
new system is envisioned as a hotline and interaction center where people
connect to information, services, and resources including a toll-free 800
number, TDD, two Web Sites, Internet email, fax, and mail. People will contact,
connect, interact and work with staff advocates to seek and secure necessary
general information and direct linkages to advocacy resources for services,
supports, and assistance. The Arc of Illinois will formally launch the first of
the program’s services in July of this year.
Tony
Paulauski, The Arc of Illinois’ Executive Director, states “The Arc is proud
to be working in partnership with the Illinois Council on Developmental
Disabilities. We plan to work very closely with and on the behalf of disability
advocates from throughout the State to build the best possible information and
advocacy coordination system.”
The
Arc of Illinois is a 51 year-old state association of 54 member chapters and
over 2,000 individual members who work on behalf of people with disabilities.
The Arc of Illinois’ mission is to empower people with disabilities to achieve
full participation and inclusion in the community and to live in their own homes
with or near family and friends. The Arc of Illinois works to keep families
together.
A
Great Resource for Designing an Accessible Home!
Children
with physical disabilities need a home environment that meets their changing
physical and social needs. But what is the best way for parents to create this
type of house? To find out, a team from the Center for Architecture and
Building Science Research at the New Jersey Institute of Technology spent time
with 65 families of children with disabilities.
The book- A House for All Children- is the product of this research. This publication provides practical guidelines for creating a safe and supportive home and offers strategies for meeting the social and emotional needs of children with disabilities. There is a video by the same name that was produced as a companion to the book. The web site: http://www.ahouseforallchildren.njit.edu/ contains excerpts from the eight chapters in the book. There is also an order form, which provides instructions for obtaining a personal copy of A House for All Children.
For further information, write to Center for Architecture and Building Science Research, New Jersey Institute of Technology, 323 Martin Luther King Blvd., Campbell Hall Room 335, Newark, NJ 07102-1982 or phone 973-596-3097.
