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July 2002 Newsletter
$75 MILLION in MI/DD SERVICES RESTORED!! Home-Based Support Services Programs Saved!!
Advocates gathered for "Lobby Day" at the Capitol in Springfield. Gathering around our information table in the Stratton Building Cafeteria are (left to right): Nicky Dargis, Deb Fornoff, Nancy Brown, Barbara Cercanowitz and Bridget Brown.
We did it! All your hard work, all that letter writing, all those trips to Springfield, all those conversations with legislators, all those sleepless nights have paid off! The economy of the state of Illinois came crashing down this year. Starting as early as August of last year, Illinois started reeling from the effects of a serious economic downturn. For the first time in Illinois history, all three state government funding streams - income tax, sales tax, and corporate taxes - took a dive at the same time. Then the tragedy of September 11th happened and the economy took an even harder hit. Every time we thought the numbers couldn’t get any worse, they did. The Governor and the Illinois State Legislature had the onerous task of figuring out how to balance a horrible budget. In February, the Governor proposed a plan that would effectively eliminate the Home-Based Support Services Program. Children and adults with Mental Illness were to be simply dropped from both the Family Assistance and Home-Based Support Services Programs. People with developmental disabilities enrolled in the Home-Based Support Services Program were to be moved into a fairly new program called Supported Living Services. This program is “Medicaid Waiver” funded and the state is reimbursed for half of the expense of the program. However, the two years SLS had been in existence was just long enough for participants and families to discover that the program had serious problems and did not work well. The Family Support Network and all of its members moved into action. Our members (that’s you!) were FABULOUS! We were forced to address our problems with two separate strategies. We knew we could not ask the state to turn away from millions of federal dollars available for people with developmental disabilities in this horrible economic year. However, that funding stream was not available for people with mental illness. We had two messages:
We shared the information about the changes by e-mail and in print with everyone we could think of who might feel the impact of these changes. We gathered members to testify at both House and Senate Appropriation hearings in Springfield and Chicago and twice mailed letters to all 177 legislators and the Governor. We
were active participants in the “Do The Right Thing” Coalition.
On April 17th, “Lobby Day”, Charlotte Cronin and Beth
Lacey of Community Support Services met with House Minority Leader Lee
Daniels, Secretary Linda Renee Baker, and Assoc. Director Melissa Wright.
Sec. Baker and Melissa agreed to use the Family Support Network Task
Force to either re-design SLS or design a completely new waiver.
Three meetings were held with Task Force representatives and DHS staff.
The meetings were hugely productive, constructive, collaborative
efforts with lots of give and take on both sides.
Changes were made to the Home-Based Support Services Program, allowing
the state to capture Federal Financial Participation dollars and saving many
of the benefits provided by the old HBSSP.
Equally important, the roughly 450 people in SLS will benefit from
improved services. The process is not
over. DHS has agreed to create a
new committee of the Statewide Advisory Council that will meet monthly for at
least the next two years. The
mission of this standing committee will be overseeing the transition to this
new waiver, addressing many unresolved problems, helping to design a training
manual, helping with communication between the Department, facilitators and
participants. All these things
are important because the process of the design of the waiver happened very
quickly and in effect, will be ongoing for some time.
In many ways, what we have is a good skeleton.
It will be the implementation that puts the muscle on it and makes the
program work. Feeling that the HBSSP had been addressed to the best of our abilities for people with developmental disabilities, we pressed on with our letter writing and advocacy for people with mental illness. We developed a “MI” Fact Sheet. We wrote more letters. We called and visited with our legislators. Now we know that funding for people with mental illness in both the Family Assistance and Home-Based Support Services Programs has been restored! The restoration is part of a $75 million package of restored funding to both MI and DD Community Services and passed by the Illinois State General Assembly (our legislature) on May 31st. We DID IT! People with disabilities proved that our voices are important and that we have power when we use them. What Are Our Big Questions For The Future?
FSN Searching For New Board Members! Want to get on the inside, be at our table while decisions are being
made, have a chance to boss Charlotte around?
Join the FSN Board of Directors! We
need energetic, motivated members who are excited to join our mission, who
will be active members of our Board, attend meetings and make a real
contribution! We know the people
we’re looking for are out there somewhere and when you look at our “wish
list” describing them, you’ll be able to identify them for us!
Is it you? We must have
a dedicated Board to succeed. The mission
of the Family Support Network is to unify individuals with disabilities and
their families to advocate for funding, services, and community resources that
strengthen and support the individual and the family directly by responding to
their individual needs and empowering them to live in their own homes.
The Family Support Network further seeks to ensure the continuation of
all individual supports throughout the life span of the individual. The Board of Directors for the Family Support plays a crucial role in this mission. The following are characteristics that we have determined to be essential to complete our wonderful Board. Remember, no one has all these skills and EVERYONE is important!
So, if you know people that fit this description, please complete the following nomination form and return to us. All nominations need to be received by August 15, 2002. You may share the same information with us by e-mail at fsn@familysupportnetwork.org or fax at 309-693-8962. Thank you!!
The
FSN Board of Directors Nomination Form Please
accept my nomination of the following individual for the position of Board
Member for the FSN. Nominee
Name: ________________________ Address:
_______________________________________ City:
___________________________ State:
__________ Zip: _______________ Please tell us about the
remarkable qualities this person has that will make him or her a great FSN Board
Member. Thank you!
If you are nominating someone other than yourself, please tell us who you
are! Your
Name: ________________________________ Address:
___________________________________ City:
__________________________
State:
_____________ Zip: _______________ Home-Based Services for People with DD: What
Do They Look Like Now? Following are highlights of the changes in the Home-Based Support Services Program for people with developmental disabilities. Call us if you are confused or need more information or help. As you read the following information it is important to remember that we know this is not a perfect program. It is a work in progress. MANY issues remain to be addressed and solved. The exciting news is that those issues will be addressed by a consumer driven committee and a firm commitment from a very excited Office of Developmental Disabilities to make them work.
Importantly, the program will continue to be called the Home-Based Support Services Program and operate under the original statute created in 1990.
The Office of DD is creating an “exceptional level of funding” for participants facing this problem. Individuals currently enrolled in more than one program, will be grand fathered into this level if their current spending exceeds the $19,620 maximum. Individuals will not be removed from a program until this level is in place. Other people are concerned because they are using
other Office of Developmental Disabilities services funded through other
programs such as day training and respite services.
The FSN will work to insure that those participants’ services also
are maintained at their previous levels even if they exceed the maximum monthly
allotment.
The goal of these surveys is to provide information to continually improve the program. We know that families have a VERY difficult
time finding doctors and therapists who accept Medicaid reimbursement. We also
know that there are many items and services that cannot be currently purchased
under the “new” HBSSP. The FSN
will be working on a number of strategies to address these issues. We may have to develop new advocacy skills and
take on Medicaid. We have also
suggested giving families a set amount of General Revenue Funding (GRF) - state
tax dollars or non-federal - that they could use any way they wanted... maybe
$200/month. However, our chances of
getting General Revenue money this year were non-existent.
The FSN will use information from you and from the DHS surveys mentioned
above to go to the legislature next year and ask for that funding. We know that for many, many participants this a frustrating time. Please help us help you. Please keep us informed about what is working and not working for you. Please share ideas and suggestions. Many issues can be resolved soon. Others will take our on-going advocacy efforts. Together we can use this moment to make a big difference for people with disabilities in Illinois. A
Resource For Illinois Families The Special Needs Network, NFP is a not-for-profit organization, which has as its mission providing critical education and information for families of individuals with disabilities and the elderly. The directors of the organization are Mary Anne Ehlert, a Certified Financial Planner and sister of an individual with disabilities, Brian Rubin, a special needs attorney and the father of a son with autism and other disabilities, and Sherri Schneider, a government benefits specialist and the mother of a child with disabilities. All three have devoted much of their careers to working with families of individuals with disabilities. They speak around the state of Illinois on behalf of Special Olympics Illinois and around the country at national and international special needs conferences. They provide critical information about government benefits such as SSI and Medicaid, explain the elements of trusteeship and guardianship, describe the various means of protecting assets and providing for an individual with disabilities through a special needs trust, and discuss the important family communication which is necessary for members of a family to carry out the wishes of the parents. The Special Needs Network website, www.TSNN.org, maintains a calendar of speaking engagements for the year and provides important articles about the steps needed on planning for the future. Individuals can request specific special needs information through email at info@TSNN.org. To speak to the Executive Director of the organization for information or to schedule a workshop for your special needs groups please call 847-522-7546 or 800-344-7725 (in IL) and ask for Jan Bednarz.
FSN
& DuPage Family Disability Network Host Legislative
Breakfast -
Left to right: Rep. Bob Biggins, Sen. Patrick O'Malley, Sen. Dan Cronin, Rep. Patti Bellock speaking, Rep. Tom Johnson, Rep. Randy Hultgren, (Master of Ceremonies Cathy Ficker Terrill standing) and Sen. Tom Walsh. Sen. Bill O'Connor arrived after this picture was taken. Roland Burris and Leader Lee Daniels had representatives in attendance.
Nancy Brown is the FSN
Education Coordinator for the Chicago area.
She was an important member of the “team” that organized the January
Legislative Breakfast in Burr Ridge. Here
are some insights she gained during that successful experience. The most effective way to impact people with disabilities in Illinois is through policymakers. They hold the key to change! The best way to do this is to talk with them directly and develop an ongoing relationship. One exciting way to get the relationship started is by hosting a legislative breakfast. A legislative
breakfast is a quick way to share information with legislators about the issues
regarding people with disabilities and to exchange thoughts and ideas with them.
It is a comfortable arena for most people and opens the door for many who might
be uncomfortable calling their legislator directly.
A legislative breakfast is a simple, effective event that requires:
In January, the DuPage Family Disability Network and the Family Support Network hosted a legislative breakfast in DuPage County. Over 150 people participated and visited with 8 legislators. For two hours, legislators had a chance to hear parents talk about issues that they face raising children with disabilities. Individuals with disabilities shared their own stories while everyone ate breakfast. People
heard their legislators talk about their perspective on the issues regarding
people with disabilities. Most of the participants left the breakfast feeling
more confident about contacting their legislators with future concerns. The
legislators saw that many people were concerned about these issues and they
understood that people with disabilities have a voice in Illinois. Some
helpful hints about getting started:
If you would like to host a legislative breakfast and need some assistance, please call the Family Support Network at 309-693-8981. We can coach you through the process. Have fun! You Are Invited To A September 21, 2002 10:00 a.m. to 3:00 p.m. St. Paul Lutheran Church 1427 W. Lake Peoria, IL
RSVP to the FSN Phone: 309-693-8981 Fax: 309-693-8962
Babysitting available with prior arrangements. Hot Dog Roast to follow at the Cronin home. Potluck Contributions Encouraged. Someone sent us an e-mail last week saying he hadn’t realized how hard we work until he attended one of the six HBSSP trainings in June. Of course, how could he? Frankly, most of the time we are in denial as well. (No, Dear, I’m not really working… I’m just messing around on the computer…) We work out of our homes between loads of laundry, meds, IEPs. We struggle to keep “it” together. We get up at 5:00 a.m. so that we can do our work and do what we need to do to be our kids’ moms. People with disabilities and the people who love them and care for them are so involved in the day-to-day patterns of survival that we have a hardly have time to understand the “bigger picture”! The Family Support Network is committed to the bigger picture. We have made the commitment to be there “at the table” as the decisions are made that affect us. We have been hugely successful. We have climbed tall mountains. We have more mountains to climb. As hard as we worked this spring, we know that the Home-Based Support Services Program has new challenges and many improvements to be made. We also know that we have an opportunity to shape it into a program that can a model for how services should be delivered to people with disabilities. We have incredible staff, moms of kids with disabilities working part time for almost nothing. We cannot afford to lose them. We pinch pennies until they scream. We can only live so long on passion and friendship. We have bills to pay, the phone, the copier, the travel, the newsletters… and on and on. They all demand MONEY!$!. This
spring we learned that the voices of people with disabilities and their
families are powerful. We learned
that we can be heard. Our successes were due to our readiness to mobilize an
educated membership. We must
continue to strengthen the Family Support Network if we are to remain active
and effective. If
we are to continue, we must raise at least $7,500 before the end of the year, just
to stay even.
We must raise $55,000 next year, just
to stay even. It
is not fair to ask us to do all that we try to do and not provide us with the
resources we need. Please
help us! HOW
CAN YOU
HELP? Join
the Family Support Network…
Contribute…
Anything you can spare is helpful.
We like to say, “Add all the zeros you can stand!” Identify
and solicit donations from other sources.
Does your child have a Grandma or Grandpa, Aunt or Uncle who is
frustrated finding a way to help?
A donation is a great way to honor someone you love.
We’ll be tickled to send them a card on your behalf if you let us
know. Help
us identify “large contributions”.
You may know someone who wants to share his gifts in a meaningful way.
Ask them yourself or contact us.
We have materials available to share. Help
us scout out grants!
Do you have experience writing grants?
We sure could use you! Thank
YOU!! |
