Family
Support Network
of Illinois
Family
Support Network
of Illinois
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Governor Ryan Includes $4 Million Increase in Budget Proposal!!
On February 2nd , Governor George Ryan gave his budget address! For THE FIRST TIME EVER, the Family Assistance and Home-Based Support Services Programs have received an increase in the Governor's PROPOSED Budget, $4 MILLION Total. Governor Ryan even directly referred to the programs in his budget address!
Governor Ryan has proposed an increase of $1,698,000 for the Home Based Support Services Programs which will enroll an additional 143 adults and an additional $2,400,000 for the Family Assistance Program which will enroll an additional 370 families with minor children with disabilities.
Contemplate this. At the beginning of Fiscal 1999, there were only about 1200 adults and families enrolled in these programs. If this legislation is successful, enrollment will total over 3100 adults and families!!!!!
The Governor’s budget also included a $5 million increase in the budget for new CILA's (group homes), $3 million for a 2% increase for Cost of Living Adjustment (COLA) for direct care workers, funding for $1/hour increase from $6/hr to $7/hr for personal assistants in the Office of Rehab Services' Home Services program, and a $22 million increase to $161 million for new enrollment in the Office of Rehab Services' Home Services program.
There is still important work to be done. We need to support Gov. Ryan as he works to get his budget implemented. We also need to recognize that much of the "Do the Right Thing" Campaign goals were not funded. These include a request for $51 million in salaries and compensation for direct care staff and first line supervisors in CILA's, ICFDD's, and other DD services. The 2% COLA mentioned above does not begin to compensate for years of no or modest increases to these workers who care for our loved ones.
What to do now? This is proposed legislation. Now we have to get it passed. Please write or visit your legislators and tell them how important this is to you. If you are now receiving services, tell them how it has impacted your life and that others are still waiting! If you are waiting, well, its obvious. Tell them how important these services are and how you would use them. Thank them for their support in past.
Do you need to know who your legislators are? You can contact the Family Support Network office or look it up on the web at http://www.vote-smart.org/multiple.phtml?flagtype=lookup&checking= .
The Family Support Network learned just after Christmas that new selections have been made for the Family Assistance and Home-Based Support Service Programs. In the last days of the year, the Office of DD decided that enough funding was available to mail application packets to 400 new adults and families, with an expectation that 250 will be enrolled.
It is hard to understand how much new funding this new enrollment represents. The Department is able to do this partly because an unexpectedly high number of applicants who did not qualify over the last year. Adults and families have also been taking an unexpectedly long time completing the application process. This means that they have not used as much funding for this year as expected. The Department is very interested in understanding more about both of these issues and is studying them now. Hopefully, we will have more information for you in our next newsletter. But, in the mean time, they are committed to the programs and continue to make sure as many adults and families are enrolled as possible.
This new drawing does represent a large commitment in "new funding" for Fiscal 2001! These new enrollees will only "cost" the state a very few months of funding in Fiscal 2000, but, of course, they will use all twelve months of funding in Fiscal 2001. This "annualization" will mean another increase in the Fiscal 2001Budget.
Our heartfelt thanks to Governor Ryan, Associate Director Melissa Wright, her staff, and all our fellow advocates who have worked with us for expansion of these programs!
Many of you will remember the highly successful "Do the Right Thing Campaign" that the Family Support Network participated in a year ago. That campaign resulted in an increase of $29 million in funding for improved and increased services for people with disabilities in Illinois. The Family Assistance and Home-Based Support Services Programs received an increase of $3 million and the new Supported Living Services Programs received funding of $2 million as part of that package. Last year was the first year of a three year campaign calling for increases of $50 million dollars each year for three years.
This year, the "Do the Right Thing Campaign" Coalition is working for a $61 million dollar increase for those same services, including $10 million for the Family Assistance and Home-Based Support Services Programs, the new Supported Living Services Program and new CILA (group) homes. Once again this initiative fits very nicely with the FSN goal of reducing the waiting lists for the Family Assistance and Home-Based Support
Services Programs by 1000 individuals and families.
In December, the Coalition started a Holiday Card Campaign asking people with disabilities and their families to send Holiday Cards to Governor Ryan and their legislators. We asked them to thank them for their support last year and remind them that we still need their help. We said, "Please tell Governor Ryan to "Do the Right Thing.’" There are still over 3000 adults and families on the waiting lists for the Family Assistance and Home-Based Support Services Programs!
Remember that last May Charlotte Cronin, FSN Director, presented Governor Ryan with the "Thank You" banner that included pictures of adults and children with disabilities either enrolled or waiting. He really liked it. In fact he said he was going to take it home to his wife!! When asked about the waiting list we told him that there are still over 3000 waiting. He said, "That's not right, I'm going to have to make it my next project!!!!"
Governor Ryan has made a great commitment to the Family Assistance and Home-Based Support Services Programs. Please write him today. Tell him Thank You for the new increase. Include a picture of your family or family member with disability. If you are receiving services, tell him how much they mean to you. If you need to start receiving services tell him how you would use them and the difference they would make in your lives.
His address is: The Honorable George Ryan, 207 State House, Springfield, IL 62706
Don’t forget your legislators!
Last spring a unique and wonderful collaboration happened between three organizations: the Family Support Network (FSN), the Illinois Department of Human Services (DHS) and the Illinois University Affiliated Program in Developmental Disabilities (IDHD) at the University of Illinois at Chicago, also known as the Institute on Disability and Human Development.
Together we wrote a grant proposal entitled "The Family Leadership and Family Support Systems Change Initiative" to the Federal Administration on Developmental Disabilities. The grant was to support "Family Support Model Demonstration Projects" under the Projects of National Significance Program.
Tamar Heller, Ph.D., of IDHD did the writing. Much of the grant was based on an outline provided by the Family Support Network. Connie Sims of DHS really put the big push in getting all the materials together in a very compressed amount of time. Big thanks to both of them for hard work and grace under fire.
In September, we discovered that Illinois was one of 22 states to be awarded $200,000 under this project! DHS is the lead agency and actually submitted the grant. The Family Support Network and IDHD have each been subcontracted to perform the work designed in the grant.
Melissa Wright, Associate Director of the DHS Office of Developmental Disabilities shares, "My staff are excited to be working closely with the FSN and the University of Illinois at Chicago on this project. Together we can improve how we offer family support services. Together we can educate families about our service delivery system and at the same time develop leaders around the state to advocate on behalf of family support programs. Family support programs are cost effective and enjoy widespread public support. Illinois has a lot to be proud of. This project is an opportunity to tell others about our accomplishments as well as learn from the experience of other states."
What Are We Going To Do??
In Illinois, we have the "best practice" models of how family support can be delivered; the Family Assistance and Home-Based Support Services Programs that are run by the Department of Human Services. They are unique to the state of Illinois and we advocate very hard to make sure funding is available so that every individual with a disability and every family has access to them.
Most families are aware that there are many other programs run by local service providers that are also designed to support people with disabilities and their families. These programs are funded by DHS and have "grown up" over many decades and are usually unique in and of themselves. They offer a wide array of services. What most families also know is that a service may be available in one community and not in the next, that it is often hard to find out about them, and they often don’t provide a lot of flexibility.
The centerpiece of "The Family Leadership and Family Support Systems Change Initiative" will be a Task Force of people with disabilities and family members. They will be trained to understand the principles and values of good family support, charged with the responsibility of understanding what family support looks like in Illinois and in other states and will be making recommendations on how we can improve these important systems. But, our charge will not end there. Once we decided what our best dream is for family support in Illinois, we will design a plan to "make it happen." There is important work to be done besides making recommendations. Who do we need to educate? With who do we need to link? Who needs to hear our stories?
The Family Support Task Force will be made up of people with disabilities or their family members and include six members from each of the eight Office of Developmental Disabilities Service Networks. They will meet three times over the next 13 months and once each between those meetings (for a total of two more) in their own Networks. The first meeting will be a three-day retreat at Starved Rock Lodge March 13 -15 of this year.
Task Force Participants will be guests of the Family Support Network and the Department of Human Services during the Retreat. They will have their travel expenses reimbursed and receive a $50 stipend for each of the 3 retreats and 2 intervening meetings.
We have hard work to do and it’s going to be fun!
Enrollment is taking place now in the new Supported Living Services Program (SLS) just begun by the Illinois Department of Human Services Office of Developmental Disabilities! Many people who have never received services before will be able to begin receiving them soon. Funding for this new program was made available when a coalition of organizations came together last year and successfully advocated for a $29 million increase in funding for expanded and improved services for people with disabilities. This coalition has been referred to as the "Do the Right Thing Coalition" and is working together again this year. (Please see previous story.)
Many of you will remember that last year the Office of Developmental Disabilities applied to the federal Health Care Financing Administration (HCFA) asking to be allowed to create a new "waiver" program that would be called "Supported Living Services." This program was designed to provide services to people with developmental disabilities who are living in their own homes or with their families. Initially, it will focus on young adults aging out of their school systems to no services, adults living at home with aging parents (over 60) or single caregivers, also without services. Yes, the age limit was 65 and over. But, the Office has just broadened the age limit to include parents 60 and over.
The program will provide up to $1,500 a month in services and supports. Funding for the program will be provided by state dollars that are "matched" by federal dollars. So for every dollar the state spends the federal government will contribute fifty cents. This also means the state has had to design the program around some very demanding federal rules and regulations.
Sometimes even exciting news can be confusing. This program is NOT the same as the Family Assistance or Home-Based Support Services Programs (HBSSP). However, because the Office of Developmental Disabilities has come to appreciate how well those two programs work, they modeled the new Supported Living Services Program after the Home-Based Program as much as possible. It is critical to understand that they have very significant differences stemming from their different funding sources. The Home-Based Support Services Program is funded 100% by Illinois State tax dollars. Most important to understand, the application processes are different and the range of choices are different.
The Supported Living Services Program cannot pay for some things the Home-Based Program can because of federal rules and regulations. Specifically Supported Living Services include: day programs, respite, personal care, transportation and certain therapies. Unlike the HBSSP, tangible goods are not covered under the SLS Waiver initiative. Providers of services to participants in SLS must also meet minimum qualifications and must bill the Department directly for services provided to eligible program participants.
These are the eligibility requirements. To qualify, a person must meet certain standards of disability. Plus, they must be Medicaid Waiver-eligible adults aged eighteen or older with a Medicaid spend down obligation of no more than $1,000 per month. They must need an array of services to remain in the home to avoid or delay out-of-home placement. They must be living in private homes or apartments, with the freedom to change providers or to move and continue to receive services. And there cannot be more than two unrelated individuals with disabilities living in the same home. The additional criteria was mentioned earlier in the article.
This program offers a wonderful opportunity for people with disabilities to receive services to meet basic needs. The Office of Developmental Disabilities is looking for ways to reach people with disabilities who qualify for these programs. This is a rare moment when new services are actually available.
If you are in need of services and think you or your family member qualifies, or if you have more questions, you should contact your local Pre-Admission Screening Agency, your Network Facilitator (see p. 5), or the Department of Human Services at 217-785-7160. If you need help identifying the right person to contact or need any other information, please feel free to contact Charlotte Cronin, at 309-693-8981 or CharlotteCronin@home.com.
A Message from Melissa Wright, Associate Director, Office of Developmental Disabilities
On behalf of the Department of Human Services, I am excited to introduce the Supported Living Services (SLS), a new type of service available under our Home and Community-Based Services (HCBS) Waiver program.
To qualify, individuals cannot currently be receiving any DHS-funded services (except respite or Vocational Rehabilitation services through the Office of Rehabilitation Services). In addition, adults must apply for and be found eligible for Medicaid benefits.
Getting the word out to individuals who are eligible has been quite a challenge so I’m happy to have this opportunity to share information about these new services. If you believe you or your family member are eligible for SLS, please contact your local Pre-Admission Screening (PAS) agency to apply to find out more information about SLS or to find out where your local PAS agency is located, please contact the Department at 217-785-7160.
Please share this information with your friends and colleagues. Thank you!
Melissa Wright, Associate Director, Office of Developmental Disabilities.
Did you know the that 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". They are responsible for understanding the needs of their Network and using the resources available to the best advantage. Facilitators are often the people making final decisions about who gets what services. Each Service Network also has an Advisory Council. All of these Network Councils need consumers and families on them. Listed below are the names of the facilitators for each Network.
Chicago North Network, 312-814-4282
Dave Voytanic, Facilitator
Northern half of ChicagoChicago South Network, 312-814-2786
Andrew Ryal, Facilitator
Southern half of ChicagoNorth Suburban Network, 312-814-5981
Ed McManus, Facilitator
Part of Cook County and McHenry, Lake, Kane, DuPage, and Kendall CountiesSouth Suburban Network , 312-814-2723
Phil Gibboney, Facilitator
Part of Cook County and Will, Grundy, and Kankakee CountiesNorthwest Network, 217-524-2521
Maurie Grafton, Facilitator
Boone, Carroll, DeKalb, Jo Daviess, Lee, Ogle, Stephenson, Winnebago, and Whiteside, CountiesNorth Central Network, 217-524-2518
Linda Shroyer, Facilitator
Bureau, Champaign, Ford, Fulton, Henry, Henderson, Iroquois, Knox, LaSalle, Livingston, Marshall, McDonough, McLean, Mercer, Peoria, Platt, Rock Island, Stark, Tazewell, Warren, Woodford, and Vermilion CountiesCentral Network, 217-524-2517
Liz Bernahl, Facilitator
Adams, Brown, Calhoun, Cass, Christian, Coles, Clark, Cumberland, DeWitt, Douglas, Edgar, Effingham, Green, Hancock, Jersey, Logan, Macon, Macoupin, Mason, Menard, Pike, Montgomery, Morgan, Moultrie, Sangamon, Schuyler, Shelby, and Scott CountiesSouthern Network, 217-782-5230
Marty Downs, Facilitator
Alexander, Bond, Clay, Crawford, Edwards, Fayette, Franklin, Gallatin, Hardin, Jackson, Jasper, Jefferson, Johnson, Hamilton, Lawrence, Massac, Madison, Marion, Monroe, Perry, Pope, Pulaski, Randolph, Richland, Saline, St. Clair, Wabash, Wayne, Union, Washington, White, Williamson, Counties
Looking for a used truck with hand controls? How about a portable ramp or a Liberator? Perhaps you want to sell one instead. The Illinois Assistive Technology Project wants to hook you up with a potential buyer or seller with a new website, www.at4u.org.
AT4U is for people looking for used equipment or for people who have used equipment to sell.
To advertise your device, type in the address, www.at4u.org, and select Sign Up and follow the on-screen directions. To find a device, search the database by region of the state or by type of device.
IATP does not guarantee any of the products. Each user must determine if it will help him/her and is worth the cost.
If you do not have access to the internet, visit your local library or independent living center, or call Sue at 800-852-5110 v/sty.
There is funding available for camp for adults and children with disabilities in Illinois. The Illinois Section of the American Camping Association has funds available to pay for one week of summer camp per individual. The funding is provided by the federal government and flows through the Illinois Department of Human Services to the American Camping Association. The camper must have a MediPlan card. If a camp takes an eligible child or adult, the camp may not charge the family anything. Of course, funds are limited, so check this out soon.
Contact the Illinois Section of the American Camping Association at 312-332-0833 or the camps listed below for more information. The following camps are just a few of the ones participating. The Illinois Section of the American Camping Association can make other suggestions.
Camp Albrecht Acres of the Midwest
14775 Sherrill Road
Sherrill, IA 52073-0050
Contact—Dianne Breitbach
319-552-1771Red Leaf Camp
Ingleside, IL (Round Lake area)
Contact—Howard Rothenberg
847-740-5010Easter Seals/Timber Pointe Camp
Hudson, IL
Contact—David Bateman
309-365-8021
One of the important ways members of the Family Support Network can work to improve and expand services for people with disabilities and their families is to educate each other about what good family support looks like, what family support looks like in Illinois, and how we can work together to expand services in Illinois.
The Family Support Network is always looking for opportunities to educate. If you would like a speaker for your group, please contact us We will work with you. No group is too small or too large. We can talk for an hour or for hours. We can help you organize a function or be a "breakout" at a conference.
Give us a call? This is the fun stuff! Call Charlotte Cronin at 309-693-8981, or Nancy Brown at 630-323-5551. Thanks!
We always (still) need your financial help. Lots of small expenses come up that aren’t covered by our grant dollars. The list is endless. We hesitate to ask for dues. People who have disabilities, their family members are often financially strapped. But, we need your help. If you can afford a donation, large or small, it will be greatly appreciated! If you dream of being enrolled in the Family Assistance or Home-Based Support Services Programs or if you already are, please help us! We must support each other. Support us with your dollars if you can. Thanks!
Yes, this page is full of stuff you’ve read before, but, it’s still important stuff!! We need your e-mail addresses more than ever. We’ve lost count of how many we have. We think it’s around 400. But, we have just under 3800 members. So we only have about 10%. Being able to communicate by e-mail is invaluable. We can contact you quickly and cheaply … FREE!!
When we organized our press conference, the first thing we did was compose an e-mail. We can’t afford to do a US Post Office mailing whenever we want to. It costs us over $1100 in postage alone, it’s labor intensive, and slow.
E-mail also allows us to share information about action alerts and conferences. We promise not to send too much. E-mail Charlotte at CharlotteCronin@home.com Thanks.
