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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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We worked really hard. We had press conferences. We had rallies. We wrote letters. We offered our hearts up on platters. Our legislators said the right things and had their pictures taken with us. Did we achieve our goals?? It’s the end of August. The Illinois Governor, the Illinois Senate and the Illinois House locked horns in a historic budget battle keeping the legislature in session longer than ever before. The House and Senate passed a budget without the support of the Governor who then took two weeks making cuts to fund the insurance programs that he believes are critical to Illinois residents. His version of the budget could be changed again if the legislators work together to override his vetoes. The Family Support Network, The Arc of Illinois, and the Autism Society advocated for $52 million in funding for NEW services, enough funding for new services for over 3,000 adults and children. We also supported new funding to provide raises for direct support workers and cost of doing business increases for community service provider agencies. The budget is a document of over 1,400 pages and is very hard to analyze. The numbers we are sharing are accurate to the best of our knowledge today. By the time this arrives in your mailbox, things may have changed. We’re still a bit confused. It’s been a grueling process. It’s not entirely over. New rumors are popping up and more information comes out every day. Do we know enough to answer the question, “How did we do?” Our efforts paid off. Because of our hard work, the legislators and the Governor kept us in mind during a very difficult budget battle. We are pleased that DD services remained in the budget throughout the overtime negotiations. We didn’t get the full funding we requested. We DID get significant new services in a historically catastrophic year. We knew we would benefit from funding that had been reserved for DD services in a “Lockbox” from Federal Hospital Assessment Taxes, money which is returned to states to fund certain healthcare initiatives. Early this year, President Bush released $830 million dollars to the state of Illinois. $32.8 million was reserved for DD and MI services. The Children’s Home-Based Support Services Waiver will have new enrollment from two sources. Three million dollars from the “Lockbox” will allow 300 new children to be enrolled in the Waiver. In addition, 182 new children will be enrolled in January as a result of the 50% Federal reimbursement of children currently being served in the waiver. The budget includes a raise for direct support workers. There has been some confusion on the exact amount of this raise. We believe it is 2.5%. We made progress, more progress than we’ve made in the past several years. Direct support workers have had NO wage increases for 3 years. Most DD programs have had NO increased funding for new enrollment in 3-5 years. In these hard economic times, it is a huge “win” to have made the gains that we have. There is more work to be done. We need to keep our momentum up and our presence strong as the budget for Fiscal 2009 (next year) is being drafted. We’ll keep working towards even more new service dollars. We’ll keep supporting appropriate increases for our direct support workers and community service providers. If we can make this progress in hard economic times, through this historic “Battle of the Budget”, not to mention the crazy Illinois electric bill discussions, think what we can do next year. Write your legislators again now. Thank them for their support this year. Most of them are exhausted and disheartened, just like us. Ask them to keep our needs in mind so that the areas not addressed adequately this year can be resolved next year. Ask them how you can help them help us.
Illinois Welcomes New DD Director Early in July, Michele Westmaas and Charlotte Cronin of the Family Support Network had the opportunity to sit down with Lilia Teninty, the new Director of the Illinois Division of Developmental Disabilities, for an informal “getting-to-know-you” visit. Although the topics were serious, the conversation was lively and relaxed as we continually finished each others sentences, laughed a lot, and rambled a bit. We left excited by Lilia’s values, her commitment, and her in-depth knowledge of the issues that people with disabilities face in Illinois as well as across the nation. Ten Things You Will Want to Know About Lilia Teninty 1. Lilia is the mom of two young children. Her son, who is almost 10, has autism. Lilia says it's not the only thing to know about her. But, it is good knowing that someone who has so much power in our lives knows what it is to love someone with a disability and to dream for his future. Lilia considers her job as the Director of the Division of Developmental Disabilities to be separate from her job as mom, although her son certainly brings passion to her convictions. 2. Lilia came up through the parent advocacy system in Indiana. 3. Most recently she served as the Chief of Staff for the Indiana Division of Disability and Rehabilitative Services, displaying her firm commitment to the improvement of the service delivery system for individuals with disabilities, their families and those who work to support them. Her vision is founded on the belief that quality outcomes are best achieved when individuals have the power to direct and be actively involved in decisions about their services. 4. Lilia knows A LOT about waivers. When she was manager of Indiana's Waiver Unit and Assistant Director of the Bureau of Developmental Disabilities Services, she had responsibility for Indiana's Waiver, state-funded and Intermediate Care Facilities (ICF's). Lilia supervised all aspects of the Waiver Services Unit including responsibility for daily operation of Indiana's DD, Autism and Support Services HCBS Waivers. 5. In Indiana, Lilia reestablished the Governor's Family Support Council and worked with state legislators, advocates, case managers, providers and individuals with disabilities on all aspects of Waiver, ICF and state-funded programs. 6. Lilia also volunteered with the Indiana Autism Coalition. She identified the need for greater communication and coordination, worked toward the formation of an umbrella organization to more effectively communicate and advocate on issues relating to autism awareness, treatment and education. 7. Lilia has earned a Masters of Public Affairs from the School of Public and Environmental Affairs (SPEA) at Indiana University. 8. Lilia came to Illinois because she "likes to succeed where others say it can't be done". Many colleagues and friends took the time to explain to her how difficult this job might be. Lilia came to Illinois knowing she was accepting a very exciting, yet difficult, challenge. 9. Lilia hopes to turn the ship a bit. She recognizes that with all large, bureaucratic systems it may take a long time to see significant changes. Lilia believes that families are important and under-utilized in Illinois and everywhere. In the long run, it will be families and people with developmental disabilities living with the system day-in and day-out that will force change. She hopes to encourage and empower a base of advocates who have learned to use the system to give their input. 10. In Illinois, Lilia is excited about our newly approved waivers. She is especially excited that they include self-directed models, pointing out the ability of participants to hire and fire their own workers. When asked about improvements for the future, she said she would love to see participants be able to bank "unused" funding from one month and use it in another.
Lilia understands that big
changes happen through the work of families. She's pleased to know that FSN has
access to informed, empowered families statewide who can be a part of moving
Illinois forward.
Advocates Rally at the Capitol!! There’s No Place Like Home… Advocates Rally for $52 Million in New Funding May 16th was the day. The Capitol of Illinois was the place as disability advocates from all over the state gathered in Springfield to advocate for increased and improved services for people with disabilities in Illinois. $52 million dollars in new enrollment for critical services was our goal. Funding that would provide new enrollment for over 3,000 adults and children in the new Children’s Support Services Waiver, the Adult Home-Based Support Services Program, the Family Assistance Program, and Community Integrated Living Arrangements (CILA). The result of a fabulous collaboration of the Autism Society of Illinois, The Arc of Illinois, and the Family Support Network, the rally was a fabulous success. The capitol rotunda was packed with self advocates, families, children with disabilities, and their brothers and sisters. All were working toward a common cause: supports and services that allow adults and children with disabilities to live full, safe, happy lives in their homes and in their home communities. What an empowering experience! The day started with yet another press conference, the third our organizations had collaborated on since January. We were proud to be joined at the press conference by our great allies, Representatives Kathy Ryg, Patty Bellock, Julie Hamos, Pam Althoff, and Randy Hultgren. It was followed by the rally in the Rotunda with legislators stopping by to share their commitment to our cause, emphasizing how important our voices are and that our needs should be a priority in state funding decisions. Advocates came from all over the state to meet their legislators and rally for the cause. Many were parents who had never been politically active and didn’t even know who their legislators were. One mom came to the Family Support Network information booth near tears after her first meeting with her legislator. She expected to simply drop off a fact sheet and was overwhelmed when her legislator asked her to join him in the elevator on the way to the Senate floor. He listened to her story. She felt heard. She knew she’d made a difference. Another pair of moms brought their young sons who have autism – a daunting challenge. Both their legislators were busy on the floor, but their secretary was so moved by the efforts of a mom who had traveled so far that she arranged for the Senator to come off the floor to meet and speak with them. Soeren Palumbo, a high school senior and the brother of a sister with disabilities, gave a shortened version of his speech about the “R word” on the floor of the Senate, bringing the Senate floor to a stand still - an unheard of accomplishment. We started the day with 60 State Representatives signed on as co-sponsors to HB 2041. By the end of the day, we had a total of 75 State Representative Co-Sponsors and 20 State Senators who had pledged their commitment to the funding! Everyone who attended had a part in the success of the day. Everyone who called, faxed, or emailed their legislators from home had a part in the success, too. Thank you for all your efforts.
ACES$!! What's
the Deal with That? The Family Support Network has been working closely with DHS and advocates over the last several months with the transition to the Children’s Waiver and the changes in the Adult Waiver. We’ve heard a lot of stories, great successes and great frustrations. There are lots of questions and some anxiety around ACES$. ACES$ is the new fiscal intermediary that participants in both the Adult and Children’s Home-Based Support Services Programs HAVE to use to pay personal support workers that they hire directly. The Feds demanded that the state use a fiscal intermediary. Illinois had no choice. In the past, DHS treated direct support workers as independent contractors. This was out of compliance with Federal regulations which state that direct support workers are actually employees of the family or individual. A fiscal intermediary insures that workers are paid properly according to Federal regulations. The transition to ACES$ happened way too fast. This was NOT the fault of the Division of Developmental Disabilities. ACES$ was hired, in part, by a bid process that was controlled by a completely different part of Illinois State government. It was supposed to be completed at least four weeks earlier than it was. The Division of DD couldn’t delay the transition. Every day lost was Federal Match dollars lost and funding that another family desperately needed to start receiving services. The Family Support Network and other advocates supported this change because of the struggles families have experienced getting their workers paid promptly, sometimes not even paid for 3 or 4 months! Prompt payment of direct support workers in the Adult Home-Based Support Services Program had been a HUGE problem in the past. ACES$ will be paying workers directly and promptly. Workers can even choose to have their payments made directly to their own bank accounts. Once we get past the initial shock and confusion of using ACES$ to pay direct support workers, we are optimistic that the paperwork and payment issues should become routine and more easily managed. A bigger challenge will be finding, training, and supervising direct care staff. That is going to vary hugely from family to family and community to community, depending on the needs, skills, and resources of the family. What kinds of workers are needed? Do they need to be highly skilled or not? Is there an extended network of family, friends, or others who will make good workers? What kind of other potential employment pools (colleges, for example) are available in the community? How creative and comfortable is the family with reaching out to find employees? How much will it mess things up if a worker doesn’t show up on time or not at all? On our website homepage, we have posted a link to a helpful document about hiring direct care staff: Toolkit for Families. Adjusting to something new is always challenging. DHS and ACES$ are working hard to make this transition a smooth one. For more information related to ACES$ in Illinois, visit http://www.acessfea.org or contact Brad Robinson, Enrollment Agent, toll-free in IL at 1-877-ACESS81 (1-877-223-7781) or by e-mail brobinson@acessfea.org or info@acessfea.org. We know that the month of August has brought new frustrations as the first series of paychecks have been issued. DHS is working VERY closely with ACES$ to eliminate these problems. Two new fax lines have been added for sending timesheets or service authorizations: (570) 558-3618 or (570) 207-7751. ACES$ would like to keep families, personal support workers, and service facilitators informed on payroll matters through email. If you would like to receive these notices, forward your email addresses to: enrollment@acessfea.org. The Family Support Network is very interested in understanding how the process is working for you. Please e-mail us with your successes, frustrations, and any tips you have to share at fsn@familysupportnetwork.org.
Since she began with the Family Support Network in November 2005, Dorelia has wowed us with her enthusiasm, professionalism, skills, integrity, and passion. She demonstrated these qualities in her efforts with the 360 Project and working with the Latino Caucus. Dorelia has been an invaluable connection to the Hispanic community. Dorelia has many gifts and strengths: her passion for her daughter, her passion for all people with disabilities, her gift of being able to network and organize people, her ability to work through any cultural barrier, her fearlessness in meeting new challenges, and her knack for building relationships when meeting new people. In fact, if Dorelia has any weakness it is her inability to say, “I can’t do that for you.” Dorelia is always there when people call upon her for support. Dorelia presented One-Day Conferences across the Chicagoland area, translated many FSN documents into spanish, connected the FSN to the Hispanic community, and was especially involved with the 2007 Chicago area STARS for the Future graduating class. In her new role with Proviso Township Mental Health Commission, Dorelia will continue as a colleague in disability advocacy. Thank goodness we don’t have to say “Goodbye”, just “Best Wishes!” We look forward to seeing her at meetings and conferences, and we are delighted that she will remain in the Illinois Disability Community. Dorelia’s home base is now the Proviso Township Mental Health Commission at 4415 W. Harrison, Hillside, IL. She can be reached by phone at 708-449-5508 x 5 or by e-mail at dorelia@ptmhc.org .
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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