Family
Support Network
of Illinois
Family
Support Network
of Illinois
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100 New Children to Be Enrolled into Family Assistance Program in May!!
Eligibility Standards to be Changed, Hundreds May Now Fail to Qualify
Charlotte
Cronin with As many of you may remember, two wonderful initiatives merged late this winter. This collaboration has resulted in great success this legislative session!
The Coalition consisted of these groups:
Advocates United, Illinois Health Care Association, The ARC of Illinois, The Institute on Public Policy, Consumer Advisory Council, Metro Chicago Human Service Coalition, Coalition of Citizens with Disabilities In Illinois, National Association of Down Syndrome, Don Moss and Associates, People First of Illinois, Equip for Equality, Provider Advisory Council, Family Support Network, TASH, Family T.I.E.S. Network, United Cerebral Palsy of Illinois, Illinois Association of Independent Service Coordination Agencies, The Illinois Chapter of AAMR, Illinois Association of Rehabilitation Facilities.
This Thursday, May 20th, after months of negotiations, representatives from this Coalition met with Governor George Ryan to thank him for his leadership in putting together a package of funding increases for people with disabilities in Illinois.
Included at that meeting were Lt. Governor Corinne Woods, Howard Peters, Secretary of the Department of Human Services, Jackie Garner of the Governor's Office, Senator Dave Syverson, Art Dykstra, Don Moss, David Stover, and Charlotte Cronin of the Family Support Network! (See picture below.)
Though included late in the process, we were at the table during negotiations. Very exciting and very heady stuff for the mom of a boy with severe disabilities!
The package totals $29 million. This funding is the result of a historic collaboration of advocacy groups who came together to speak in a single voice.
This is what is included:
Our news first! $6 million increase for the Family Assistance and Home-Based Support Services programs, Supported Living, and other service options.
$13 million for increases in salary and benefits to direct care workers in CILA group homes. This works out to $1/hr.
$8 million for salary increases to direct care workers in ICF/DDs.
$2 million increase for salary increases to staff in Day Training Programs.
We will not know for some time exactly how that $6 million will break out. When asked, Secretary Peters said, "The Family Assistance and Home-Based Support Services programs will see a significant piece of that money." He had also told Charlotte earlier in the week that he will continue to look for more opportunities to expand funding for these programs over the coming year. Secretary Peters is known to really like these programs. He has had great success finding us new funding this past year. The department has enrolled 640 new adults or families of children with disabilities in fiscal '99. That number combined with this new funding should put us very close to meeting the goal of enrolling 1000 new individuals and families this year.
While visiting the Governor, Charlotte presented him with a "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!! But, more importantly he asked about the waiting list. When told that there are still 3000 waiting, he said, "That's not right, I'm going to have to make it my next project."!!!!
This success is the result of all of your good work. Your personal stories carried the day. Thank you. If you get a chance, drop Sec. Peters and Gov. Ryan a thank you note.
The Honorable George Ryan
207 State House
Springfield, IL 62706
(Dear Gov. Ryan)
Howard Peters, Secretary
Department of Human Services
100 S. Grand Ave. East
Springfield, IL 62762
(Dear Sec. Peters)
Be sure and write your own legislators as well, thanking them for their hard work. This was a team effort!
One major source of supports for people with disabilities are federal dollars that are "matched" by state dollars and are most often referred to as "Waiver" programs. These programs are funded at the national level by the Health Care Financing Administration (HCFA) and administered at the state level by the Illinois Department of Human Services in conjunction with the Department of Public Aid, the lead state Medicaid agency for Illinois. They are often called "Waiver" programs because they are a cost-effective alternative to placement in a Medicaid-funded hospital or long term care setting, such as a nursing facility or an Intermediate Care Facility for Individuals with Developmental Disabilities (ICF/DD).
The Home and Community Based Service (HCBS) Waiver for adults with developmental disabilities has been one of the most popular waivers. It has provided opportunities for people with severe disabilities to live in group homes, foster care homes, or receive services in their homes. About 7000 adults with disabilities live in CILAs.
Last fall, HCFA came to Illinois and did its five year audit. They were concerned about the safety and welfare of some people living in CILAs, especially in foster care settings. The state agreed to a temporary limited moratorium on new waiver enrollment. HCFA asked the state of Illinois to write a new application for its HCBS waiver. They wanted more monitoring and other measures to ensure the safety and welfare of participants. But, they also wanted the program to be more consumer and family driven!
The Office of Developmental Disabilities convened a forum to advise the department on how the new waiver should be designed. The HCBS Waiver Forum was made up of five consumers (people with disabilities or family members) and representatives of five service providers. Charlotte Cronin of the Family Support Network attended as the family member of a person with a disability, her son, Daniel.
The most exciting outcome of this forum is the addition of a new "Supported Living Array" of services. This array is deliberately modeled after the Home-Based Support Services Program (HBSSP) that we advocate so hard for. It is designed to provide a laundry list of services that people with severe disabilities can choose from and still live in their homes in the community. The list includes such services as intermittent habilitation, respite, personal care, homemaker, nursing, transportation, occupational therapy, physical therapy, speech therapy, and day programs such as developmental training or supported employment.
The Department is also having discussions with HCFA about the feasibility of "waiverizing" the HBSSP. If successful, federal "match dollars" could be used to expand the program. One of the great advantages of the Home-Based Program is it ease of use. Paper work is limited and the "strings" attached are minimal. We don’t want to mess up a good thing! As exciting as this possibility is, consumers present asked the Department to proceed cautiously. The new HCFA Waiver proposal was submitted March 31st. The Office of Developmental Disabilities is hopeful to be able to start approving new HCBS services July 1,1999.
March 21st to 23rd were the dates of the first Family Support Network "Retreat on Support." Starved Rock Park in Utica, Illinois was the site and a beautiful place to hold the retreat. Families from all over Illinois gathered together to meet each other, share their stories and learn about how Illinois supports individuals with disabilities and their families.
"It was very wonderful and worthwhile! I learned a great deal and realize that I still have more to learn." said Retreat participant, Cindi Swanson, parent of a child with a disability. "Everyone was grateful for the opportunity to participate in the workshop and enjoy the beautiful surroundings."
The retreat provided information about the different funding streams, levels of bureaucracy, and how individuals can access that bureaucracy for funding that can support people with disabilities in Illinois. The speakers talked about funding and programs at the federal, state and local levels.
Melissa Wright, Associate Director of the Office of Developmental Disabilities, Illinois Department of Human Services, kicked off the retreat with welcomes and important information about her department. She encouraged people to tell their stories to lawmakers. Melissa explained that she is a bureaucrat, a manager, and her job is to carry out policy. Even though she needs to work within the box it is important for her to keep the walls of the box low so she is able to reach over and take things from other areas to make a difference for people in Illinois. She needs to hear from families and so do lawmakers. Melissa values choice, policies that make sense, consistency, equity and fairness. She reminded everyone that families and individual rights are a team effort and Illinois is making bold strokes toward providing discrete services.
Fran Smith is a national expert on Family Support and hales from Richmond, California. She described what good family support looks like and the evolution of the Family Support Movement. She said, "Families have to have courage and plans to make visions come true." The participants had an opportunity to work in groups learning how to ask questions that do not have a yes or no answer so people can start thinking with their imagination. She believes that these are the best kinds of questions to ask if you want to be a change agent.
Federal funding was the topic of the Monday morning workshop. Barb Otto and Julie Justus from the SSI Coalition for a Responsible Safety Net presented information about Social Security Insurance (SSI) and KidCare (Illinois’ new health insurance program for children). Matt Abrahamson, the new Executive Director of the Coalition of Citizens with Disabilities spoke about the Independent Living movement and what kind of services Centers for Independent Living provide. Jeri Johnson from DHS and Beth Lacey, Executive Director of Community Support Services in Brookfield, educated participants on how Medicaid waivers are used in Illinois.
The afternoon was spent learning about state programs and local community mental health centers, SAS agency's, individual care grant programs, local area networks, and grant programs with the offices of Developmental Disabilities and Rehabilitative Services. Speakers included Charlotte Cronin, Ed McManus, Cheryl Rogers, Gary Seelbach, Rob Kilbury, and Joanell Voigt.
Bill Murphy, Executive Director of Ray Graham in Downers Grove, explained the various county boards that might provide supports to people with mental or developmental disabilities. Information about special recreation associations was presented by Barb Posega of the Rockford Special Recreation Association.
Nancy Brown and Cindi Swanson of Pathfinders, Inc. shared exercises on dreaming for hopeful tomorrow's that are positive and possible. Everyone left with the tools and strategies they needed to create their own action plan.
The retreat ended with Dan Thompson, from Access Living Center for Independent Living. He talked about civil rights and the law. All the speakers were outstanding and inspiring. Each of them was dedicated to helping people with disabilities and their families. All the people who gathered together at Starved Rock this March weekend were exceptional people who live courageous lives and make a difference in their families and communities. Our huge thanks to the Department of Human Services for their support.
Thanks!! DHS!
Melissa Wright, Associate Director of the Office of Developmental Disabilities, called the Family Support Network offices just this Monday, May 24th to share this exiting news. Packets were in the process of being mailed that same day to families of children with disabilities with an expectation of new enrollment of 100 children into the Family Assistance Program. This is in addition to new enrollment of 100 adults with disabilities into the Home-Based Program earlier this same month.
New enrollment for Fiscal ’99 now totals 740!!!!!
Big Thanks to Governor Ryan, Secretary Peters, and Associate Director Melissa Wright. These folks have been instrumental in our success! Also a big thank you to all our legislators who have worked so hard with us. A special thank you to Senator Steve Rauschenberger who has provided invaluable support. And thanks to all of you! Your letters, phone calls, and visits are the key. Look at us! We can do this!!
Proposed amendments for the Division of Specialized Care for Children (DSCC) were filed on May 7th in the Illinois Register. Families now have until June 22, 1999 to respond with their comments.
DSCC is a statewide program that helps with the cost of medical care for children birth to 21. A child must have a medical condition which can be improved through medical treatment and fall within a number of categories.
Right now families that meet certain financial criteria may be eligible for full benefit participation or partial financial participation. Full financial assistance is provided when the adjusted family income considering family size is equal to or less than that which is allowable in accordance with the DSCC Income Scale. Partial financial assistance is provided when the Adjusted Family Income considering family size exceeds the amount allowable on the DSCC Income Scale. The income requirement is based upon the family's size and annual income. Families with adjusted annual income no more than 65% of the Illinois Median Family Income are eligible for DSCC financial assistance.
With the new proposed amendments there will be no more partial financial participation or annual family participation fee. The whole sliding scale fee will be wiped out.. If these proposed amendments are enacted there will be hundreds of families who will be bumped out of the system totally. They will be left paying massive medical bills that their insurance doesn't pick up. There is a possibility that some families will have to file bankruptcy because they can't pay their child's medical bills. There is also a possibility that those children won't get medical services, because their family can't afford them. We all know the cost involved in taking care of a child or an adult who has a chronic medical condition or has a catastrophic illness.
As a single parent whose kids may be ousted from the program if the proposed amendment go through, I'm very concerned. If you would like to read about these proposed amendments read the Illinois Register, Volume 23, Issue 19 - May 7, 1999. If you are concerned about these proposed amendments submit your comments by June 22, 1999 to:
Charles N. Onufer, M.D., Director
Division of Specialized Care for Children
2815 West Washington, Suite 300
P.O. Box 19481
Springfield, IL 62794-9481
217-793-2340 or 217-793-0773 fax
and
The Joint Committee on Administration
700 Stratton Building
Springfield, IL 62706-4700
You also should cc:
Your state representatives and senators too.
If you have any questions or would like a copy of the proposed amendments you can contact Donna Hutcheson at the Illinois Assistive Technology Project, 1 West Old State Capitol Plaza, Suite 100, Springfield, IL 62701, 1-800-852-5110 v/tty or iatp@fgi.net.
About the Division of Specialized Care for Children
Some people consider the Division of Specialized Care for Children (DSCC) one of the best kept secrets in Illinois. But, it can be an important support for children with disabilities in Illinois.
Established in 1937, DSCC is Illinois' official agency responsible for helping children with chronic health problems and their families find a future. DSCC works to help children with disabilities, and those who have conditions which may lead to disabilities, reach their full potential. By helping to coordinate and provide specialized diagnosis and proper medical care, DSCC assists children to grow and develop to the full extent of their abilities. DSCC offers services through three programs.
The Core Program offers care coordination and cost-supported diagnosis and treatment for children with chronic health impairments determined eligible for program support. DSCC supports treatment recommended by physician specialists, such as therapy, medications, specialized equipment, and supplies.
Any Illinois child, from birth to age 21, may qualify for no-cost diagnostic services if it is suspected that an eligible medical condition exists. DSCC helps families by providing information and referral to resources, and by coordinating medical care. DSCC coordinates specialized medical care and services, such as other physician services, medications, special equipment, and supplies. Payment for these services may be possible if the family meets certain financial criteria.
For instance, one boy, diagnosed with Angelman’s Syndrome, has a severe seizure disorder. While he does not qualify because he has a specific disability, he does qualify because of one of the medical outcomes of that disability, his seizure disorder. All of his medical bills related to that seizure disorder have been covered by DSCC. He also receives free diapers. Another young man has received assistance with diapers, medications, and the cost of surgeries and wheelchairs.
The Home Care program is often referred to as the "Trach" program or Katie Beckett Program. Every state has a Katie Beckett program. These programs are federally funded and are the outcome of a federal lawsuit filed when a little girl named Katie Beckett was being forced to stay in the hospital because the family could not get supports to bring her home. The general rule of thumb in Illinois is that the child must use a trach, a ventilator or a respirator to qualify for the program. The Home Care Program is intended to help families care for children who are technology dependent and require intensive skilled nursing care in their own home rather than in a hospital or skilled nursing home.
The Children's Habilitation Clinic, founded as the Center for Handicapped Children in 1956, is a multidisciplinary clinic which provides care for children with developmental disabilities and education for health professionals.
Children from birth through twenty-one years of age with known or suspected impairments involving movement, self-care, communication, and learning are appropriate for care. This includes children with acquired disabilities and degenerative problems, as well as children with congenital problems. Special clinics are held for children with spina bifida, and the genetics program at the University of Illinois at Chicago (UIC) sees children with metabolic disorders and other genetic problems. Most of our patients have multiple impairments, most commonly cerebral palsy, but a specific diagnosis does not make a child eligible or ineligible for care at CHC.
These programs may be a great resource for your family. You can access more information by calling 1-800-322-3722 or on the web at www.uic.edu/hsc/dscc.
Editors Note: In each newsletter of the Family Support Network, we try to include a "real life story" of an individual or family receiving services from the Family Assistance or Home-Based Support Services Programs or the story of an individual or family waiting. In this edition, we are excited to share the story of the Camp family who was selected in the drawing of 400 this January. This article is by Mary Camp. Mary lives in Peoria with her son, David, and daughter, Tricia.
There are many milestones in the life of a child that are celebrated. If your child has a disability those celebrations are accompanied by a blanket of fear and questions. None have been as great as worrying about my daughter, Tricia's, future.
Tricia’s life is complicated. She has multiple disabilities that require a lot of care. She has five doctors. She takes a lot of medications. She needs lots of equipment; a ramp into the house, modifications to the bathroom, a wheelchair, a positioning stand. Tricia needs constant assistance to meet her personal care needs like dressing, toileting, bathing and eating.
How can I be assured that those who care for her will provide the care and love she has at home? The answer is that no one can replace the person she knows as mama. The only answer is to keep her home for as long as I am able. Without help, however, that "as long as I am able" was coming to an end. Then a letter came. Tricia's name had been chosen for the Family Assistance Program. I cried.
For days, when I went to greet her smiling face in the morning, my thoughts were, "I can keep her home!" With this financial help, I can greet her with "Good morning, my darling girl" thousands of more times.
This week, I bought her a new pair of shoes for the first time in six years. I bought her a spring coat for the first time in her eighteen years of life. These are little pleasures. Presently, I am looking for a personal attendant to stay with her after school and in the summer. Now I will be able to help pay for that. Tricia has been enrolled in the Family Assistance Program for three months. We are in the process of buying a new van with a lift. Our old one was 12 years old and we didn’t know when we could replace it.
Tricia will be transitioning to the adult world sooner that I care to admit. Before this support, I didn’t know what she would do with her time after graduation. It costs $800 a month to enroll her in day training at our local Arc. I couldn’t afford that. If Tricia had to stay home, so did I. I am the sole support of our family.
I know how badly families need this support. Too often families struggle with so little. There was a time when I did not even have money for diapers for her. This kind of support needs to reach as many families as possible.
