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| About FSN Advocacy Family Stories Family Support Best Practices FSN Information Available Join The FSN Links Newsletters Upcoming Events What are Home-Based Support Services & Family Assistance & How Can I Apply? HOME |
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Almost 1,000 to Begin Services in 2008 All those Letters! Those Phone Calls! The Press Conferences! The Rallies! The Testimony! We worked hard and we worked hard in a very discouraging year. BUT, OUR WORK PAID OFF! Almost 1,000 children and adults will become new participants in services funded by Illinois Division of Developmental Disabilities Waivers. Eight hundred (800) additional adults and children will be funded in these programs by Hospital Tax Revenues. Sometimes you’ve heard this referred to as “Lockbox” funding as it was set aside in negotiations to fund DD services. An additional 183 children will be funded by the Federal Match provided by the transition of 72D participants into the Children’s Home-Based Support Services program last year. They will have access to services in one of the following programs: Community Integrated Living Arrangement Services (CILA), the Adult and Children’s Home-Based Support Services Programs, or Developmental Training Services. And a New Enrollment Process! We knew the PUNS was IMPORTANT! Now it is the basis of our new Enrollment Process… Adults and children will now be chosen for new enrollment from the PUNS (Prioritization of Urgency of Need for Services) database. Names will be selected based on the information provided in the PUNS database and shared with the appropriate Independent Service Coordination Agencies. The Independent Service Coordination Agencies will do the appropriate Pre-Admission Screening (PAS). Assuming the individual is found eligible, the Independent Service Coordination Agency will work with the family to submit the necessary service authorization requests. Selections from the PUNS database will be based on the following criteria; urgency of need, length of time on the database, statewide geographic distribution, current living arrangements, caregiver situations, randomness, etc. The selection criteria were originally reviewed by the Developmental Disabilities Statewide Advisory Council. The criteria will continually be re-evaluated as PUNS data is analyzed. A number of capacities will be held open each month for immediately urgent situations such as abuse, neglect, and homelessness. An anticipated ten capacities will be reserved each month and continually re-evaluated. The Division will continue to process applications for individuals who have special funding allocations, such as individuals moving from State-Operated Developmental Centers (SODCs) and individuals transitioning from the Department of Children and Family Services (DCFS).
An Invitation to a Conversation with DD Director Lilia Teninty Greetings! I would like to hear from you! This spring I have asked the Family Support Network to help me organize and host a series of conversations all over the state. I arrived in Illinois last summer just as the Children’s Home-Based Support Services Program was being introduced and changes were made to the Adult Home-Based Support Services Program. This year we are enjoying large new enrollment in services provided by the Division of Developmental Disabilities, a result of your dedication and advocacy. The new enrollment has enabled us to create a new application process. We are also planning to start the process of writing a new waiver in a thoughtful, deadline free manner. Your voice is important. I would like to hear directly from you what is working and what we can improve. This April, I will travel around Illinois to the sites below. You know better than anyone else what is important to you and your family. Please consider joining me. See you this April! Lilia Teninty, Director, Illinois Division of Developmental Disabilities
Director Teninty Announces Plans to Develop New Person-Directed Waiver Anticipation and excitement was in the air at the January 14th Waiver Ad-Hoc Committee meeting when Director Teninty announced her plans to develop a new Illinois waiver for people with developmental disabilities, laying the foundation for a future of community-based supports that are “person-driven”, as opposed to the current “program-driven” model. She expects a lot of vibrant discussion over the coming year about methodology. What do we value? How do our policies reflect our values? How do we reinforce the quality changes recently implemented - -and improve upon them? Do our rates and policies provide incentive for what we want? How do we adjust our rate model to achieve our goals? If we can’t expand the pie (increase dollars), can we cut it differently (redistribute dollars)? Without a reauthorization deadline, time is available to carefully consider options, engage in valuable discussions including families and individuals, address both children and adults simultaneously, and develop a solid foundation for a future plan. Your participation is vital. You can start by attending one of the meetings above.
John Gier and His Friends Start Their Own Business Early in May 2007, several parents gathered to meet with Avenues to Independence in Wheeling, Illinois. What did they have in common? They all had young adult children with developmental disabilities who were out of school and unable to find work. Several had college experience; a few had worked with agencies that could not find any jobs for them. After several meetings, the families decided to support their sons in starting their own business. Bob Okazaki, the Executive Director of Avenues for Independence (www.avenuesonline.org), found out about a company that helps organizations fundraise by recycling small electronics. This past October 2nd, John Gier, Greg Campone, and PJ Flaherty celebrated the opening of their new business, “Recycling Avenues”. “Avenues to Independence” has provided them with workspace in their warehouse as well as computers and desks. The three young men provided the ideas and enthusiasm. They selected a name and a logo for their business and designed letters of introduction and their own business cards. To advertise, the young men paid for a flyer in the local newspaper, sent letters and e-mails to their families and friends, and this spring they will be hosting a recycling drive at a local high school. Like any startup business, most of the business’ current revenue is paying for day to day expenses such as postage and office supplies as well as capital expenses such as accessibility adaptations for their computer systems. The business owners are waiting to pay themselves. John Gier is a participant in the Adult Home-Based Support Services Program. He uses funding from the program to pay a Personal Support Worker to assist him in taking notes, learning the computer system, doing the physical packing activities, and driving to pick up donated recyclables. Additionally, John is using his Home-Based Support Services funding to pay PACE to provide transportation for him to and from work. Other parents are volunteering their time so that their sons or daughters are able to participate. They are a fledgling group but excited and persevering. Just a few weeks ago, John moved into his own condo with a roommate. His Home-Based Support Services funding provides a personal support worker to assist John with meal prep, shopping and other activities of daily living. John knows he would not be able to be so independent without the support he is receiving. The Home-Based Support Services Program made it possible. Lisa Lew, John’s Service Facilitator, reminds us all to 'think outside the box' when the traditional day programs aren't a good match, to get creative and turn to our communities to see how we can piece together a program that works for the individual. Special recreation programs, community professionals, DORS, places of worship are great examples. I think this is a great example of how self-advocacy and family/community support makes a difference!
Adaptive Equipment / Assistive Technology / Home and Vehicle Modifications It’s not a secret, but many people are unaware of a special funding category available for participants in the Adult and Children’s Home-Based Support Services Programs and Developmental Training. This category provides funding outside of the monthly allotment in the Home-Based Support Services Programs and also for people who are receiving funding for developmental training only. The funding can be critically important to people who are challenged to live in their own homes or with family because of lack of accommodations such as ramps, vehicle lifts, or grab bars. The $15,000 Over 5 Years will also fund assistive technology such as computer touch screens, software, or augmentative communication devices. This $15,000 benefit is outside of the regular monthly allowance maximums for participants’ service plans. But, prior written approval is required. If you are in the Adult or Children’s Home-Based Support Services Waivers, contact your Service Facilitator to request the necessary prior written approval. If you are in a Developmental Training program, make the request through your QMRP. Your request will be submitted by them to your Network Facilitator, reviewed for completeness, and then sent on for approval through the Rates Section of the Division of DD. Questions about the benefit or your request should be made to your Network Facilitator. He or she can be identified online at http://www.dhs.state.il.us/page.aspx?item=32381 For details of these benefits, more examples, and exclusions, see p.30-33 of the DD Waiver Manual at http://www.dhs.state.il.us/mhdd/dd/Waiver%20Provider%20Manual.pdf
Breaking News...A Historic Change!! New Enrollment for Developmental Training to be Provided Within the Home-Based Support Services Program It happened without fanfare but the Family Support Network is pleased to share the news that starting with the new enrollment funded by the “Hospital Assessment Taxes” people seeking Developmental Training services will be able to access them through the Adult Home-Based Support Services Program. This means that those new enrollees will have access to other services outside of Developmental Training. Developmental Training is funded at $952 a month. Since participants in the program have access to up to $1,911 per month (or $1,831 after service facilitation), they will have $879 per month to use on the other services available through the program. Participants don’t have to use the extra funding, but if their needs change, they will have it available. Even better yet, if they want to create services for themselves outside of developmental training they will have that flexibility. Just like what John Gier has designed for himself.
Florence Lange Speaks Up! Do you wonder if you can make a difference? Do you doubt that your story can spur change? Does your voice seem too quiet to be heard?? Never doubt the power of your voice!! Florence Lange didn’t. She saw a problem. She told her story. She was heard. And now the problem will be resolved. Florence Lange made a difference because she had the courage to speak up. She stepped outside of her comfort zone, traveled a few hours, and told her story to the right people. As a Service Facilitator of the Home-Based Support Services Program, Florence clearly saw the detrimental effect of the new “GED/High School Diploma” rule on the families she serves. The rule mandates that personal support workers have either a high school diploma or a GED, be over 18 years of age, and pass a criminal record check. Florence took her concerns to the Illinois Advisory Council on Developmental Disabilities in Springfield in October. She shared stories of families who could not find a personal support worker meeting the criteria. She told of families who rely on compensation for mothers who serve as primary caregivers. When mothers don’t qualify under the new rules, everyone loses. The mothers can’t find work outside of the home because there is no one else to take over the caregiver duties. If new caregivers can be found, they lack the skills, knowledge, and dedication of the mothers. The mothers struggle to be reliable employees at their new jobs when they have difficulty finding reliable personal support workers that can be trusted to care for loved ones at home. Most often, mothers continued as primary caregivers with no compensation -- creating a huge financial burden for families. Now just a few months later, Reta Hoskin, Chief of the Bureau of Program Development and Medicaid Administration Division of Developmental Disabilities, announced the intention of the Division to file an amendment with the feds to change the GED/High School diploma rule. Because of Florence’s testimony, as well as similar complaints heard in many other venues, including at the FSN’s New Dreams seminars around the state, the Division quickly became aware of the intensity of the problem. If we had all grumbled and groaned together privately over coffee, nothing would have happened. But – because there were people who knew where to speak and to whom -- we have change. Never underestimate the power of your voice. Florence Lange’s voice is no more powerful than yours. Our collective voices are hugely powerful. Stay connected and informed so you, too, can get the right message to the right person in the right place.
We’ve got the tools to help you: · Navigate the system · Understand new policies and programs · Take part in current advocacy campaigns We are constantly adding new information. Keep checking back for more!
Dreams Come True for Nick Schubert Joanne Schubert of Woodridge attended the Dreaming New Dreams seminar in Glen Ellyn to find out more about how to build a life for her son, Nick. This is what she had to say, “It's so exciting – There are so many more options for Nick now! I'm so glad I went to the Waiver training! It opened up a whole new world that I didn't know was available to him. The presenters did a phenomenal job of thoroughly explaining everything. To most of us, this is like learning a new language. Even though we've heard a lot of this information before, it still takes a comprehensive day, such as the FSN and The Arc provided, to truly make sense of everything. I received a wonderful compliment today from Nick’s Service Facilitator. She was just amazed at how informed I was about Home Based Support. So, of course, I raved about the seminar and told her to check the FSN website for more information. There is so much confusion about Home-Based Support Services Programs. What they (the FSN and The Arc) are doing is SO important! We appreciate everything they’ve done and will continue to do!” If you missed the first “wave” of seminars, never fear! Due to the overwhelming positive response, five more seminars are scheduled around the state. Join us and learn more about how to use the current waiver programs to support a full life.
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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