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51st in the Nation!! Where are we? Where do we want to be?
We’ve known for a long time that
services for people with disabilities in Illinois are not what they should be.
How Embarrassing Can It Be?
According to the newest “State of the States” study by David Braddock of Colorado University, Illinois now ranks 51st in the nation in numbers of people with developmental disabilities living in settings of 6 or less. How would you feel, how would you behave if you were forced to share a bedroom with someone you didn’t even get to choose? The PUNS Tells Us People Are Waiting! Current information (June 2008) from the Prioritization of Urgency of Need for Services (PUNS) tells us that over 7,784 people in emergency or critical need of services were waiting. Currently there are 22,355 people receiving services from the Division of Developmental Disabilities. Comparing those two numbers tells us that there is a 35% gap in services. Our Providers Are Struggling! Rates do not reflect even close to the real cost of providing services. They struggle to provide quality services in a severely dehydrated system. A Living Museum of Antique Services
We create new programs. We never
give up old ones. People live segregated, expensive lives behind tall fences.
Illinois supports 2,500 people with disabilities in State Operated Developmental
Centers, third in the nation behind Iowa and New Jersey. This IS About You! It’s hard hearing bad news. It’s tempting to hide under your pillow. But, these documents cannot be ignored. Your future and the futures of our loved ones count on your advocacy NOW! What You Can Do
Read and become familiar with
both the “Gaps Analysis” and the “Blueprint”. Both documents can be reviewed in
their entirety at
www.state.il.us/agency/ICDD.
Letter from Illinois Council on Developmental Disabilities Director Dear Family Support Members: I was thrilled when Charlotte asked me to write a brief introduction to this newsletter. The Family Support Network has always been a wonderful partner in working on issues important to people with disabilities and their families. This is just one more way to highlight our partnership. I am equally excited that the Family Support Network is dedicating their newsletter to The Blueprint for System Redesign in Illinois. The Illinois Council on Developmental Disabilities (ICDD) has been concerned for a long time, as many of you have been, about the current status and the future of the state’s service delivery system. With limited resources, a system that relies heavily on large congregate settings, and a growing waiting list, we see a looming crisis for our state. To avoid this crisis, ICDD wanted to offer a plan for the future, which is how the Blueprint for System Redesign in Illinois came into existence. The Illinois Council on Developmental Disabilities partnered with Human Services Research Institute (HSRI) for this important project. The Blueprint is intended to serve as a concrete system redesign action plan for reducing Illinois’ over reliance on large congregate care facilities and increasing access to quality supports in the community. The Blueprint outlines a 7 year action plan. With the most recent State of the States data, we learned that Illinois now ranks 51st in supporting people with developmental disabilities in settings of 6 people or less. As a fairly wealthy state, this is embarrassing. We hope that you will join us on our crusade. We must educate policy-makers and others on the positive and productive path necessary for our future. We are at a crossroads. We have a choice in moving forward. We must work together to make it a reality. As a nation, we believe in independence, freedom and the principle that “all men are created equal.” We live in the Land of Lincoln, where we take particular pride in our commitment to these principles. Yet Illinois lags behind nearly every other state on measures important to providing people with developmental disabilities the basic constitutional freedoms available to Americans. We can do better, and working together - we will do better. Gathering support for implementation of this Blueprint is one real step we can take now to ensure a better future. Best Wishes and Thank You! Sheila Romano
Sheila Romano, Executive
Director, Illinois Council on Developmental Disabilities
The Blueprint for System Redesign in Illinois Illinois is at a crossroads. Currently, Illinois serves more than 20,000 people with developmental disabilities through a network of both dispersed community-living services and large congregate care facilities. Moving forward, fiscal and policy patterns must change significantly. Action must be taken to assure that the state utilizes its economic resources efficiently so that present and future citizens with developmental disabilities have the opportunity like any other person; to live, work and play in their communities with the services they need. A recent review of this system shows that: 1. Illinois lags behind nearly all other states in allocating needed funding for services for people with developmental disabilities and in providing these services in the most integrated settings. a. The system relies too heavily on large facilities that segregate individuals from the community. As shown, 63 percent of those receiving residential services live in facilities of seven or more people as compared to 29 percent nationally. b. The effects on the system are worsened by Illinois’ overall lack of investment in developmental disability services. Despite wealth of state, studies show that Illinois’ fiscal effort is constantly below the national average. c. The investments Illinois does make are inefficient. Larger facilities are more expensive to operate than smaller community options. Conservatively, the average cost per person living in a State Operated Developmental Centers (SODC) is about $125,000 per year. Average annual cost per person living in a community residence are less than half that, and even less if the person can receive supports to live at home with family. While individual circumstances vary, overall the state pays a higher cost per individual served supporting fewer people than it might if the funds were reallocated towards community services. 2. If the present community system receives enough resources through proper allocation of funds, it is possible to provide person-centered services and meet the needs of individuals with developmental disabilities. a. Illinois does not provide services with reasonable promptness to its existing citizens with developmental disabilities. Of more than the 11,000 people on the waiting list, approximately 7,000 presently have a “critical” or “emergency” need for services. This number is expected to swell to at least 14,000 by 2014. b. The system does not operate effectively to provide the “person-centered” services with the best chance of resulting in preferred outcomes related to employment and community integration. c. The current community system lacks resources to support people with complex medical needs and behavioral difficulties, help people access the system, coordinate services and assess performance. Call to Action In response, ICDD and HSRI call for Illinois policymakers to take significant and prompt action to redesign the current service system. Sixteen action steps are recommended related to six system redesign areas and will help lead to change, with specific focus on the importance of investment in individuals, families and communities. Key actions include a commitment to: · Eliminate the service “wait list” by 2014 by supporting about 2,300 additional individuals annually. · Invest heavily in “in-home” supports so that individuals can stay at home with their families or live in the community with needed supports. · Downsize the number of people currently living in the state’s nine SODCs. If action were taken now, by 2014 this would reduce the number of people with disabilities in SODCs by 1,051, allowing five of the nine SODCs to close. · Enact “Money Follows the Person” legislation to help individuals transition from residence in Intermediate Care Facilities for the Developmentally Disabled (ICF/DDs), SODCs and nursing homes into alternative community residences such apartments, houses, etc. · Offer financial incentives for service providers who operate large community facilities (i.e., ICF/DDs) to transition into alternative service venues. · Strengthen the existing community services system by: o Emphasizing and adequately funding services that promote preferred “person-centered” outcomes related to community integration and employment. o Improving wages and working conditions for employees, helping community service agencies attract a stable and competent direct support labor force. o Expanding community support for people with all types of developmental disabilities, including those with challenging behavior and extensive medical needs. o Promoting improved access to services and service coordination to assure that the system is utilized more efficiently and that individuals get the support they need, no more and no less. o Implementing individual budget allocation practices to help ensure that funds are spent based on individual needs, rather than on predetermined types of services.
It is entirely feasible for
Illinois to implement each of the action steps that are recommended. In
contrast, inaction will result in serious negative consequences for people with
developmental disabilities.
How Bad is the Need? The
"PUNS" Tells Us In 2003, advocates celebrated a historic victory when a bill was passed by the Illinois General Assembly creating a cross-disability database or waiting list for services for people with disabilities in Illinois. In November of 2005, the State began officially gathering information for persons with developmental disabilities using a survey tool called the Prioritization of Urgency of Need for Services (PUNS). The “PUNS” allows us to have accurate information to use as advocates as we talk to our policymakers. The “PUNS” provides the state with important information as new programs and services are developed. The “PUNS” will now be the tool the state uses as it decides who will receive services on an individual basis. Current and expanded PUNS Data can be found at: http://www.dhs.state.il.us/page.aspx?item=31193
Lilia Teninty, DHS Director of
the Division of Developmental Disabilities
met with self advocates and
family members this April in Melrose Park, Naperville, Bloomington, and Mt.
Vernon. The application process for waiver services: Participants discussed the need to develop standardized guidelines that every family has access to so that the process is transparent, equitable, and understandable. DORS Home Services Program vs. DDD HBSS: Consumers want to know how to evaluate and choose. They asked that a chart be developed. Developmental training, supported employment, and the need for other flexible community based options: Participants and their families want to be able to use waiver funding to pay for options other than traditional workshop or day training. Flexibility in the Home-Based Support Services Program: Funding should be available for more and varied options such as special recreation, camp, college tuition, and various therapies such as hippo and music therapy. Medicaid: The need for more physicians, dentists, and therapists who take Medicaid and a list of those who will accept Medicaid. PUNS Issues: Should children under 5 be included in PUNS? How do we more effectively communicate to families the importance of PUNS? How do we standardize the PUNS process across all Case Coordination Agencies? What is the process for annual updates? How often can the PUNS status be changed? Latest State of the States rankings for Illinois: How do we improve and how do we effectively use this information to make that happen?
Director Teninty discussed her
plans to craft a new waiver capturing the qualities important to families – a
waiver that is person-driven and flexible. The input given at these listening
sessions will be very helpful in the development of that waiver.
Rally Day!! Hundreds Gather at the Capitol! The Family Support Network joined forces with The Arc of Illinois, Autism Speaks, Giant Steps, The Autism Society of Illinois, and IADD-PAC for Rally Day in Springfield on April 15, 2008. Advocates from across Illinois met at the Capitol to demonstrate their unity and to share both their personal stories and requests for action with their legislators. Highlights of the event included a Press Conference and a Rally in the Capitol Rotunda. Legislators joined advocates to emphasize the critical importance of increased funding and services. Organizations provided information to advocates, legislators, and other Capitol visitors. The families representing these organizations requested their legislators’ support for SB3022 which would provide $38.8 million in new funding to help adults and children who are currently waiting for much needed services. These programs help adults and children to live in their local communities with their families or in community settings close to home. “These programs represent real help for real families and individuals today,” Charlotte Cronin, Executive Director of the Family Support Network, said. “They offer people opportunities to be flexible and creative, to design the services best suited to their needs.” The increased funding will help families support their loved ones with disabilities at home. It will support adults with disabilities when they are ready to transition to community settings while their families are still strong enough to help them. Sheila Dickson, a self-advocate from Peoria, spoke from her experience to describe what it means to her life that she was able to move out of her parents’ home and into a local community living arrangement: “As my parents got older, they worried about where I would live when they couldn’t help me anymore,” said Dickson. “About nine years ago, I was able to move into a group home in Peoria and receive services there. It is my home now.” Jamie Smith won two Silver and two Bronze Medals at the 2007 Special Olympics World Summer Games held in Shanghai, China on October 2-11, 2007. Despite his accomplishment, his mother, Alice Smith, worries about his future. “My main concern for Jamie’s future is what will happen when we make our transition (die). Who will take care of him? Will they treat him well?” “We need to help society’s most vulnerable human beings,” said Cronin. “And no one knows those challenges of caring for children and adults with developmental disabilities better than their families.”
Students with developmental disabilities will have a powerful advocate to champion their cause as the DePaul University College of Law opens its new Special Education Advocacy Clinic – thanks to Nelly Aguilar. Nelly is a 2006 Graduate of the Family Support Network’s “Illinois STARS for the Future” training. “There is a clear link between disabilities, poverty and minority status,” said Nelly, the clinic’s director. “Legal representation through the clinic will substantially impact the ability of our state’s most vulnerable children to obtain a free and appropriate public education, as federal law mandates.” Aguilar, who conducts special education law trainings for families, professionals and students, has personal motivation for leading the clinic. The mother of a young son with a developmental disability, Aguilar was forced to sue a school district when her son was unlawfully displaced from a public school preschool program. In addition to promoting polices favorable to the education needs of children with developmental disabilities, the Special Education Advocacy Clinic also will provide legal representation to financially distressed parents of these children. Among the clinic’s central goals is increasing education opportunities for law students in the area of special education law while facilitating the adoption of better practices to help shatter barriers often faced by culturally diverse children with developmental disabilities who live in underserved communities. The clinic’s clients will be represented by law students, under the supervision of a clinical law instructor. Among their responsibilities will be encouraging collaborations between school districts and parents as well as advocating at individual education plan meetings, mediation sessions and special education proceedings. For further information about the clinic, contact Nelly Aguilar at 312-362-5856. The project is funded in part by the Illinois Council on Developmental Disabilities through a $123,000 Cultural Diversity at the Policy Table grant. Congratulations, Nelly, and thank you for the clinic and the inspiration!!
FSN Bids Michele Westmaas "A Fond Goodbye" Two of the very important ways our advocacy work enriches our lives are the wonderful friends we make and the exceptional people we have the honor to work with. That surely sums up our friend, Michele Westmaas. Michele has accepted a new position as coordinator of the Pike County Community Health Partnership (www.pikehealthpartnership.org ). She will be helping the small, rural county with high needs and limited resources coordinate their efforts, support cooperation and pool resources, and bring in outside grant dollars to the county. How exciting and Michele is just the right woman for the effort! She shares, “I learned so much working with the Family Support Network and The Arc of Illinois. Having the opportunity to work with Charlotte and Tony was huge! They are amazing mentors. The experience of advocating at the Capitol gave me a new appreciation for democracy and how important it is to be an active participant. Empowering other parents, connecting them to the information they need to make a difference in their children’s future, hearing their stories, and sharing our concerns – that is something I will miss the most.” Michele’s e-mail is momonamission@verizon.net . She will continue to write her column, Mom on a Mission available online at http://momonamissionblog.blogspot.com. Go get’em, Michele!! We are so proud of you!
"FSN Upstate Advocacy Coordinator" The Family Support Network is delighted to introduce Octavia Byars, our new “Upstate Advocacy Coordinator”. Octavia is mom to two wonderful children. Her daughter Dametria is 13 and her son, Tremaine (TJ for short) is 2. Octavia has been a lifelong advocate and recently helped form a Parent Support Group, Anything Is Possible for Our Kids. She brings to this position her experience as a motivational speaker, a community volunteer, a public servant and most importantly, the experience of being a mother to a child with significant challenges. Octavia shared that “From the day my son was born he has been my little miracle baby. My son TJ was born at 24 weeks and is challenged with Spastic Quad Cerebral Palsy and other significant disabilities. Although our family has faced major challenges, we have been able to overcome each new hurdle together. I would like to thank the Family Support Network for bringing me on board, and I look forward to bringing my enthusiasm and skills to a great organization.” Welcome, Octavia, and we look forward to learning from you and working with you at the Family Support Network! Octavia is now busy seeking co-hosts for the One-Day Conferences in the Greater Chicagoland area this Fall. If you are interested or would enjoy having Octavia speak to your group, large or small, she can be reached by e-mail at octavia@familysupportnetwork.org or by phone at 708-296-8234.
E-Mail Us Your E-mail Address!
Being able to communicate by e-mail is invaluable. We can contact you quickly and cheaply … FREE!! When we organize our advocacy alerts, the first thing we do is compose an e-mail. We can’t afford to do a US Post Office mailing whenever we want to. It’s expensive, labor intensive, and slow. E-mail also allows us to share information about conferences, disability services, and more. Send your updated information to InTheKnow@familysupportnetwork.org. Please mark this address as “safe” in your e-mail manager. Thanks!
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