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Fall 2001 Newsletter
Gearing
Up for Fiscal 2003: We’re
back at it!! What to do next? After three years of great success, the FSN faced a frustrating spring legislative session. No new funding for increased enrollment in the Family Assistance and Home-Based Support Services Programs was included in the Illinois State budget for Fiscal 2002. That means that while current participants in the program will continue to be enrolled, it is unlikely that any new enrollment will take place this fiscal year (which ends June 30, 2002). While just under 3000 people are receiving services in these two important programs, close to 5000 individuals and families have placed their names on the “potential applicants list” in the belief that they will qualify. Too many people are waiting for services for us to give up! Although we were not successful in getting funding for these programs increased this year, Spring 2001 taught us important lessons. Most critically, our
Illinois State Senators do not understand how important these programs are to
us. Illinois State Senators
consider themselves the “gatekeepers” of the Illinois State Budget,
protecting the state from those “freespending” members in the House of
Representatives! The Senate
considers itself “where the buck stops” when it comes to the fiscal health
of Illinois and feels great responsibility for maintaining a responsible and
reasonable reign on spending. They must understand how important programs
like the Family Assistance and Home-Based Support Services Programs are to us
before we can expect their support! Each Senator represents the citizens from two State Representatives’ districts. That means that not only is he or she responsible for representing twice as many people as a State Representative, they must participate on many more committees. As welcoming as they want to be, tracking down Senators in Springfield and having a good conversation with them during the spring legislative session is very difficult. This fall the FSN is launching its “One Senator at a Time” Campaign. Our goal is to build relationships with every one of our State Senators. When they know us, when they have visited us in our homes, when they have met our families, they will not be able turn their backs on us! We are asking that one family from each district host a State Senator in their home and invite other families as well. The goal will be to let our Senators fall in love with our families, see up close what our lives look like and hear our stories. We will explain the importance of the support that these programs provide. Please consider hosting an Illinois State Senator in your home this fall. As scary as it may seem, it’s really fun and you will be building great resources for your future. The FSN will provide the information necessary to make this a fun and comfortable experience for you. We are putting together packets that will include a sample invitation, fact sheets and literature for you to share. We will also include a description of what a “sample” visit might look like. If you feel a need, we can also make sure that an “experienced” advocate or family member is there to help. The “One Senator at a
Time” Campaign is just one layer of our fall strategy. 1. At the same time, visits from FSN members to other key Illinois policymakers will be happening. We are working on “getting meetings” with Governor Ryan, the Director of the Bureau of the Budget, and Sec. Linda Renée Baker. We also hope to visit with leaders in both parties in each house of the Illinois State Legislature. 2. We are building our phone tree. Family Support Network members who have participated in our phone tree efforts in the past know that it is very powerful when they get to know other advocates in their community and work together. Providing up-to-date information or that extra nudge can make the difference in motivating us to make those phone calls or write those letters. The phone tree will be designed so that all members of a particular phone tree “branch” will have the same Illinois State Representative, Senator and U.S. Congressman in common. Our goal is that no single phone tree captain will have more than a dozen members to call and will not have to make any long distance calls. 3. We are growing a “swat team” of FSN members to be prepared to provide testimony as various State Legislature Committees meet. Knowing that our lives are hectic and unpredictable, we plan on a list of 20 or more FSN members who would be willing to testify as their schedules allow. We will be identifying a “Hearings Monitor” who will keep us apprised of upcoming hearings in which we have an interest. We would like to have 2 or 3 members who are willing to testify about what people with disabilities and their families want and need at each hearing. These projects are a huge undertaking but we know that we must work hard to educate policymakers if we want the Family Assistance and Home-Based Support Services Programs to grow! There are too many of us still waiting for help! There are ways for everyone to contribute! Think about what you can do and let’s get busy!! We will do this together. What Can You Do?
To offer your assistance, please contact Charlotte Cronin at 309-693-8981 or by e-mail We need your help to make this work!
We
Know We Are Powerful…
It’s
easy to become discouraged when despite all our hard work; the programs we
advocate for do not receive the increased funding they so desperately need,
especially when we know that there are folks “out there” right now who are
not receiving the services they need to lead “just a normal life.“ As
we “gear up” for our fall efforts, take a moment to study the graph at the
right. In 1991 there were only
414 people enrolled in both the Family Assistance and Home-Based Support
Services Programs! At the end of
Fiscal Year 2001, that number has risen to over 2900.
Especially exciting is the growth we have witnessed, that we have made
happen, in the last four years. From
the end of 1997 to the end of 2001, enrollment has more than tripled… from
919 to 2915 participants. If it
wasn’t for the hard work of Illinois advocates that wouldn’t have
happened! We
did it before.
We can do it again! Please
join us!
The Family Support Network has, from its very beginning, been an organization primarily composed of people with disabilities or their loved ones. Our Board of Directors has been blessed with members who have great passion, wonderful values, huge stubbornness and an unfailing sense of humor. The following members have recently resigned and we will miss them greatly! Thanks to each and every one of you for sharing your hearts and time with us. Marge Petersen from Moline is the mom of a handsome, young man with severe disabilities. She is a veteran fighter for people with disabilities and it has been an honor to have her on our board. Dolores
Fox
from Rock Island
is
also the mom of a young adult with disabilities. Dolores is another veteran
advocate for people with disabilities and we’re going to miss her!
Marge and Dolores both brought not only passion to their advocacy, but
the long view of knowing where we’ve been and where we need to go. Rebeccah Rogers of Springfield resigns as the President of our Board. Becky is the mom of three small children, all of them with disabilities! Becky has unfailing good cheer and an incredible heart. She stuck it out with us when any reasonable person would have called “UNCLE!” Thanks, Becky! Phil
Milsk
is a
lawyer and legislative consultant in Springfield and we really appreciate the
inside information he’s been able to share with us. Phil, don’t think you’re off the hook now! Lisa
Cesal
used to be from Downers Grove
and
now has left us to go to college in Wisconsin. Lisa is a powerful
self-advocate and we’ll miss her, too! This spring, our Board sought new members for the first time since our incorporation in 1999. We studied our board to understand areas of expertise that would strengthen our ability to grow into the future. New members were elected in May. Of the 20 members on our new board, 19 either have a disability or have a family member with a disability! We proudly announce the addition of the following members to our Board of Directors. Julie Justicz from Chicago had a brother with disabilities who is now deceased. Julie is an attorney and works for the SSI Coalition for a Responsible Safety Net. Alan
Goldberg from Wilmette is the dad of a
couple wonderful girls. Sarah has
cerebral palsy. Alan is a long
time advocate for people with disabilities and has served as president of the
Board of UCPI and Chair of the Illinois Council on Developmental Disabilities. Donna
Hutcheson
of Springfield is
the mom of a terrific teenager with cerebral palsy and is the Director of
Legislative Affairs for the Illinois Assistive Technology Project. Welcome
and thank you all for offering your time, energy, and support to the Family
Support Network. We are looking
forward to a fun and productive partnership.
DHS Office of Developmental Disabilities Announces New Network Facilitators The
state of Illinois is divided into 8 regional Service Networks for the purpose
of delivering services to people with disabilities in Illinois. Each network has it’s own “Facilitator”, responsible for
understanding the needs of their Network and using the resources available to
the best advantage. Facilitators are often the person making final decisions
about who gets which services. Each
Service Network also has an Advisory Council. All of these Network Councils need consumers and families on them.
Below is an updated list of facilitators for each Network. All facilitators can be reached at the same address:
319 E. Madison Street, Suite 3M, Second Floor, Springfield, IL 62701.
Phone: 217-524-2515 or 217-524-2516.
Low Cost Internet Services Available to “Special Needs” Households in Central Illinois Through Infinitec What is Infinitec?
Infinitec means "infinite potential through technology." Infinitec is the assistive technology program of the United Cerebral Palsy Association of Greater Chicago. Infinitec’s mission is to advance independence and promote inclusive opportunities for children and adults with disabilities through technology. Services provided through Infinitec include information services, access to assistive technology equipment, training and education programs, as well as access to specialists. In order to increase access to assistive technology services for children and adults with disabilities, the staff of Infinitec is committed to creating partnerships to advance the mission of Infinitec. What
Infinitec programs presently exist? Assistive
Technology Information Services: Infinitec
Websites - provide information about: -
Assistive technology (www.infinitec.org); -
Inclusive education strategies and resources (www.infinitec.all-learners); -
Access to a durable medical equipment exchange network (www.infinitec.org/dme); -
A new website for Infinitec assistive technology coalition members from 309
school districts statewide (www.coalitionconnection.org).
Assistive
Technology Equipment: · Assistive
Technology Exchange Network (ATEN)
- located at the Howe Center in Tinley Park, ATEN recycles computers and other
technology that has been donated by corporations and individuals to benefit
learners with disabilities. The
program has distributed 60,000 pieces of technology, plus nearly 11,200
complete computer systems. This
equipment is being donated, free of charge, to learners in public schools in
520 schools and 215 cities and towns throughout the state of Illinois. · Assistive
Technology Demonstration and Display Area
- provides the opportunity for children and adults with disabilities, their
parents and family members, and caregivers a place to see, feel and use
assistive technology devices of many types. Infinitec’s Ameritech Access to Opportunity Learning Center is
located at 160 North Wacker Drive, Chicago, in the UCPA Chicago administrative
center.
Assistive
Technology Training and Education: · Assistive
Technology Seminars
- Infinitec offers seminars at 160 N. Wacker Drive, Chicago, to support
professionals and caregivers in their work with assistive technology. These programs are commended for their hands-on,
user-friendly approach to assistive technology education. In addition to the annual calendar of seminars, Infinitec develops and
provides customized training programs based on agency and consumer requests,
such as the two programs listed below. · First
Tech Touch -
a program provided to parents of infants and toddlers with disabilities who
need to discover, along with their child’s caregivers, the power of
technology available to the child that can open the doors of opportunity they
never dreamed possible as a result of their disability. Both equipment and software are featured. · Voices & Choices - a program provided to teachers and related service providers to give them the opportunity to see, touch and try out assistive technology equipment available for use in the classroom.
Assistive
Technology Partnerships: · Infinitec
West - is housed in a new 16,500 sq. ft. building in Villa Park, Illinois.
This $2.8 million dollar facility provides a full array of
assistive technology services and programs, including assessment,
consultation, information, demonstration and display of equipment, training
and education programs, etc. · Infinitec Southwest - in Tinley Park, Illinois, provides assistive technology services to a coalition of 92 school districts from Joliet south to Kankakee and from Hickory Hills west to LaSalle and Ottawa, Illinois. Services include assistive technology equipment rental and exchange programs, the provision of assistive technology service providers, information resources, and training and education. A new 10,000 sq. ft. building to serve as the new home for the coalition is being constructed in Tinley Park as a result of groundbreaking in October, 2000. · Infinitec
Disability Answer Network (IDAN)
-
provides information for people with disabilities, their families and their
caregivers via "reading rooms" complete with printed, audio, and
video information materials. IDAN
resources are located in human service agencies throughout the greater Chicago
area. Each IDAN facility is also equipped with free on-line access
to the internet, as well as access to a closed-area network for IDAN member
agency clients on which to share e-mail, document libraries, and access to
information about each of the member agencies and their areas of expertise
ranging from legislative issues to estate planning to assistive technology and
much more. ·
Infinitec
North Coalition
-
Beginning July 1, 2000, this new assistive technology coalition has been
created in partnership with the school districts in the LICA and SEDOL special
education cooperatives as well as in Waukegan, Illinois. ·
Infinitec
Mid-Illinois Coalition
- Beginning July 1, 2000, this new assistive technology coalition has been
created in partnership with 90 school districts, special education
cooperatives, adult service agencies, and Illinois State University to serve
mid-state Illinois. · Infinitec DuPage Coalition - 40 school districts in DuPage County have formed this coalition to share information, training, and equipment to benefit their students with disabilities.
Low
Cost Internet Services: Infinitec Mid-Illinois, in collaboration with AIT/ssi.net, Inc. is offering low cost internet services for special needs households. The rate for unlimited access is $9 per month. The only qualification is that a member of the household has a disability. This special rate is available in the following communities:
Keep in mind that there are cities/towns near the ones listed that can call toll-free to the cities/towns listed. They may be able to receive this service as well. To sign up or for further information, contact Kathy Schaeffer, Sales Manager, AIT/ssi.net, Inc. at 309-674-5290, ext. 1121 or by e-mail at kathy@ssi.net. Illinois Guardianship Reform Project Final Report Details Need for Systemic Change “Adult guardianship is everyone’s issue…. Some of us, or our loved ones, will need a substitute decision-maker in various aspects of our daily lives.” - Mark Heyrman, Chairperson of Guardianship Reform Project Task Force By the year 2035, twenty-five percent of the population in this country will be elderly with the potential for physical or mental impairments. The number of non-elderly individuals with disabilities will continue to increase due to improved survival rates of infants born with disabilities and greater life expectancy. These trends make it essential that Illinois establish an effective guardianship system that strikes an appropriate balance between an individual's right to self-determination and the court's responsibility to provide protection from harm. On June 5, a coalition of supporters met for the first time to offer suggestions for implementing the recommendations made in the Final Report of the Illinois Guardianship Reform Project, available in its entirety online at www.equipforequality.org.
The report from the Illinois Guardianship Reform Project, an initiative of Equip for Equality, documented the findings and recommendations of its 17-member multi-disciplinary Task Force for improving the adult guardianship system. Included in the report are plans for implementation of key reforms, including amendments to particular guardianship sections of the Probate Act. "Although Illinois has many skilled and dedicated guardians, as well as diligent and resourceful judges, the Project's report identifies serious problems in the guardianship system that must be addressed," said Morris A. Fred, Manager of the Project and Senior Policy Analyst for Equip for Equality. Initial funding for the Project came from The Chicago Community Trust, the Polk Bros. Foundation, The Field Foundation of Illinois, Inc. and the U.S. Department of Health and Human Services. A recent grant from the Illinois Council on Developmental Disabilities is enabling Equip for Equality to undertake a Public Awareness and Coalition-Building Campaign for implementing the Project's key recommendations. Five major areas are identified for
reform by the Project's report:
Guardianship Reform in the Illinois
Legislature Equip
for Equality has introduced a bill for amending particular guardianship
sections of the Probate Act in the Illinois House and the Senate. Sen.
Kathleen Parker (R-29) is lead sponsor in the Senate with co-sponsors Sen.
Lisa Madigan (D-17) and Sen. Barack Obama (D-13). Supporting the legislation in the House are Rep. Kevin McCarthy (D-37),
Rep. Barbara Flynn Currie (D-25) and Rep. Patricia Reid Linder (R-65). Despite
the strong support of 21 disability-related organizations and service
providers, the legislation was not acted upon during this session. However,
Equip for Equality plans to work with the Coalition members and other
supporters to secure passage of the Task Force Recommendations. If you are interested in additional information, would like to offer support, or would like to host a speaker on this issue, contact Morris Fred at 1-800-537-2632. A Great New Resource for Families!
Kathie
has published a wonderful new book, Disability is Natural –
Revolutionary Common Sense for Raising Successful Children with Disabilities.
The following information describing the book is from Kathie’s website:
www.disabilityisnatural.com. Kathie
writes that children with disabilities, under the loving guidance of their
parents—the true experts—can lead successful, natural lives at home, in
school, and in their communities. But first, parents must recognize that
disability is not the “problem.” The problem is, and always has been,
society’s attitude toward, and social policies for, children and adults with
disabilities. When
parents replace today’s conventional wisdom with the common sense values and
creative thinking detailed in this book, all children with disabilities
(regardless of age or type of disability) can live the life of their dreams! In
this user-friendly book, you’ll learn how to:
Kathie Snow also has a website and a bi-monthly newsletter, Revolutionary Common Sense. To order the book or newsletter, or for additional information you may contact: BraveHeart Press, P. O. Box 7245 Woodland Park, CO 80863 or call toll-free: 866-948-2222. Fax is 719-687-8114. Important Phone Numbers for Information and Assistance The following phone numbers are toll-free and can provide information and assistance on the topics described. The Women’s Health Help Line: 888-522-1282 Offered by the Illinois Department of Public Health at the Office of Women’s Health. Provides information and referral services. Department of Human Services: 800-843-6154 Provides assistance and information about programs offered through DHS including the Family Assistance and Home-Based Support Services Programs. FSN Launches Membership Drive – Join us! Dear
Friend of the Family Support Network, Alan Goldberg, President Susy
Woods, Membership Committee Chair FSN Board of Directors
Dear
Families and Friends: We
have achieved a new level of independence as an organization. From our start as
an “initiative” of People for Inclusive Communities to our present status as
an independent not-for-profit, we have relied on the generosity of the
Illinois Council on Developmental Disabilities for the majority of our
funding. Now we are “grown up” and looking for new funding sources. We are
aggressively seeking financial support through donations, a membership drive,
and grant writing. Charlotte
Cronin FSN
Executive Director
We’re
Proud of Our Outcomes - DURING FY2001, the FSN
Yes, I Want to Join the Family Support Network!! Yes!
I want to help the Family Support Network continue to educate, inform and
advocate for individuals with disabilities and their families.
Individual/Family
Membership: $ 15.00 ____ Professional Membership: $ 25.00 ____ Non-for-Profit Agency/Organization Membership: $100.00____ I really want to be a member, but I need a scholarship!_____ I would like to sponsor Individual/Family Member scholarships totaling: _______
ADDITIONAL DONATION (Thank You!!) Great Friend: $0 - $99 _________ Benefactor: $100 + __________ Name: _________________________ Organization: _____________________ Address: _________________City:________________ State: ____Zip: ______ Phone Number: _____________ Fax: __________ E-mail: ___________________________________ My employer provides a charitable funding match.
_______ Employer’s name and address:________________________________________ Please
mail to The Family Support Network, 5739 W. Martindale Lane, Peoria, IL 61615 Thank You!! |
Kathie
Snow is the parent of two teenagers, one of whom has a disability. During the past ten years, her presentations across the United States and
Canada have enabled thousands of parents to acquire new skills for raising
successful children who happen to have disabilities.