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The Council for Disability Rights |
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July 2004
Gargoyle Awards nomination deadline looms On Friday, October 15th from 6 PM to midnight, the Gargoyles will be in Chicago at Hyatt Regency McCormick's ballroom. Discounted parking will be available for $13.50. There will be a cash bar. Invitations will be mailed in September. It is not too late to nominate your favorite advocate for an award — Winged (Lifetime Achievement), Razzberry (Self Advocacy), Crane (Unique Achievement), Gnawing (Public Policy), Hooded (Young Professional), Dragon (Child Advocate). The deadline for the nominations is July 31st. Please do not send nominations by fax. For more information, please call the office (312/444.9484). 
About the Gargoyle Awards
Nomination form
CDR Home Modification project progress report The Council for Disability Rights received funds from the Department of Labor to provide accessibility modifications. In collaboration with a significant number of representatives from advocacy and service organizations, we have selected 11 clients for this pilot project. The project is designed to demonstrate that the provision of structural accessibility renovations and appropriate assistive technology will help facilitate success in getting a job or continuing to work. Each client has received or will receive a visit from our project Occupational Therapist, Marion May, who has generously contributed her time and expertise. In addition to her assessment of individual needs and helpful structural changes in their living environments, clients are receiving helpful hints and a variety of services, including adaptive products and recommendations for ways to minimize fatigue and make activities of daily living easier. Many suggestions offered can be easily implemented at little or no cost. [For a list of creative ideas to enhance quality of life, please see the following article.] Examples of modifications completed or in progress include installing stairway handrails to improve safety and mobility, mounting grab bars, widening doorways, constructing ramps, and fabricating a customized shower transfer bench. Not only did CDR provide these architectural changes to improve access and make work possible, we also obtained for clients a number of different products to enhance their independence, such as hand held shower heads, shower chairs, bath lifts, and a portable ramp. Direct services as well as advocacy and information and referral are a major component of the Department of Labor project, but there are other aspects to this program as well. The Office of Disability Employment Policy (ODEP) requested that we address policy issues that impact the acquisition of Home Modification Services. We conducted a survey of consumers and service providers and learned that there is an overwhelming need for a centralized source for information about home modifications. We have begun an initiative to educate realtors on how to identify properties with accessibility features and how to better serve customers with disabilities. We are excited to report that our efforts will receive local media coverage to educate the public about this important issue. The Home Modification project will be featured on ABC7 Chicago in an upcoming segment with Karen Meyer and on CAN TV. Barriers that make it difficult to get in and out of one's home or to manage activities of daily living can hinder successful employment. We are gratified that, in keeping with CDR's mission of promoting inclusion and participation for people with disabilities, the home mod project has helped many individuals retain or gain employment, and thus become a more productive member of their community.
Home modification resources and details on CDR's project
Practical Tools for Activities of Daily Living By Marion L May, MS, OTR/L During my years of practice as an Occupational Therapist, I discovered that there are many devices and materials which can help make daily living easier and not cost a large sum of money. I have been fortunate to have the opportunity to assist many people with disabilities identify items which would provide the special characteristics they needed. Most people are aware of the many vendors who supply special products for people with disabilities (Sammons-Preston, North Shore Medical, Walgreen's Drug, etc). The majority of these come with a price tag, which may not be covered by insurance, Medicaid, and are cost prohibitive. Often times, with ingenuity and creativity, substitutions can be found which will meet the specific needs of the individual as well as fit the cost parameters. We all can learn from each other and your questions and/or solutions may be the exact piece of information that someone else has been searching for. ISBA has a wealth of experts who are willing to share their knowledge and experiences to make life fulfilling for others. We cannot entertain medical or diagnosis specific questions. Please make your questions as concise as possible and relate to daily living skills. Include a telephone number or e-mail address in the event we need clarification. Remember, there are some in the ISBA family who have years of experience and others who are new to this family. Please address your questions/suggestions to: Crossroads, ISBA office. Sample Questions Dear ISBA, My daughter has just learned to transfer into bed and is having difficulty sliding onto the bed, her pajamas seem to get stuck on the bedding. Do you have any ideas? Thanks. Tammy and Mom One method I have found to be very successful is to buy some washable lining material from the fabric store. It should be about 36 inches wide and the length of the width of the bed. Sew it across the middle of the bottom sheet, where her hips come. It will provide a slippery surface for her clothes to slide on. You can jazz it up by using a bright color fabric. Dear ISBA, I just moved into a new house and the bathroom door is about one inch too narrow for my wheelchair to clear. I don't want to have to tear out the whole door and casing, any suggestions for this problem? Tom There are off-set hinges which can be purchased at a hardware store, Home Depot, Menard's or Lowes, and allow the door to open completely, clearing the total doorway. These will give you about one additional inch of clearance. If these do not allow enough space, you may need to consult a carpenter for a solution. Dear ISBA, My child likes to help me cook, but the dishes and pans keep sliding around on the table and he cannot stir and hold the pan. I have seen sticky stuff where he has therapy, but it is difficult to clean and is expensive. I have used a wet cloth under the pan, but it still moves. Mary B. Try using the foam type of shelf lining that comes in a roll. It is non-skid and you could wash it in soapy water. You can purchase it in grocery stores, dollar stores and department or discount stores. There are also place mats made of the same material which are a distinct size, don't need to be cut, and are a little heavier. These are a little harder to find. Source: Reprinted with permission from Crossroads, June 2004. Crossroads is a publication of the Illinois Spina Bifida Association. Push America : Student service group devotes hours, raises millions In 1977 the Pi Kappa Phi fraternity established Push America as a nonprofit corporation with the purpose of instilling lifelong service in its fraternity members and serving people with disabilities. Undergraduates from all across the country continue to establish volunteer relationships with local facilities that serve people with disabilities in conjunction with fund-raising on campus and in their local communities for the projects and programs of Push America. Members have raised millions of dollars as well as donated millions of man hours to renovate facilities that serve people with disabilities across the country. Projects of Push America:
Push America
NOTE FROM CDR: We salute your mission: building leaders of tomorrow by serving people with disabilities today. Legal advocate cites ongoing segregation on eve of Olmstead anniversary WASHINGTON, June 21 /U.S. Newswire/ — Five years ago tomorrow, the Supreme Court issued its historic Olmstead decision, affirming that, under the Americans with Disabilities Act (ADA), people with disabilities should be served in the most integrated setting possible: their communities. The following is a prepared statement by Ira Burnim, legal director at the Bazelon Center for Mental Health Law, on the anniversary of the ruling: "While many Americans with disabilities have made progress since the Olmstead ruling, people with mental illnesses have been largely left behind in efforts to implement the decision. Most states are enacting Olmstead reforms at a snail's pace, defying the spirit of the ruling and preventing Americans with mental illnesses from participating in their communities. "Rhetoric has far outstripped action to promote community services for people with mental illnesses. States are quick to trumpet their limited efforts to implement Olmstead, but these have produced little actual movement of people with mental illnesses into integrated community settings. "Budget pressures have closed psychiatric hospitals across the country, but few appropriate community services have been adequately funded to help people with mental illnesses live successfully in the community. Instead, states have 'transinstitutionalized' people with mental illnesses to settings as outmoded, isolating and inappropriate as the facilities they were meant to replace. Increasing numbers of people with psychiatric disabilities now find themselves in large board and care homes, 'adult homes,' nursing homes, and other institution- like settings. Thousands wind up in jail or prison because chronically under-funded community mental health systems fail to provide meaningful support. "Where real progress has occurred, it is largely because states have been sued. Five years after Olmstead and 14 years after enactment of the Americans with Disabilities Act, litigation should be unnecessary. Yet it remains the single most effective way to combat the persistent segregation of people with mental illnesses. "It's past time for Olmstead implementation to move out of the courtroom and into America's communities." The Bazelon Center spearheaded the disability community's efforts in Olmstead v. L.C., the case that led to the Supreme Court's landmark ruling on community integration of people with disabilities. The Bazelon Center for Mental Health Law is a national legal advocate for the civil rights and human dignity of people with mental disabilities. Contact Christopher Burley at 202/467.5730 ext. 133.
Bazelon
Original court briefs and current articles and publications on Olmstead implementation
Source: Press Release 6/21/04. New ADA and ABA accessibility guidelines cleared for publication The Access Board recently received approval to issue updated accessibility guidelines for facilities covered by the Americans with Disabilities Act (ADA). The Office of Management and Budget, the Federal government's regulatory clearinghouse, approved the new guidelines on June 25 after a four-month review. The Board plans to publish the new guidelines on July 26, the14th anniversary of the ADA's enactment into law. The new rule marks the first full-scale update of the ADA Accessibility Guidelines (ADAAG) which were originally published in 1991. The final rule also will include updated guidelines for Federal facilities, which are covered not by the ADA but by an earlier law, the Architectural Barriers Act (ABA). Both the ADA guidelines and the ABA guidelines, which the Board updated jointly to make them more consistent, address access in new construction and alterations. The published guidelines will not be mandatory on the public. Instead, they will serve as the baseline for enforceable standards (which are mandatory) maintained by other agencies. These other agencies, such as the Department of Justice under the ADA, must update their standards according to the Board's guidelines. In doing so, they will indicate when the new requirements must be followed.
Access Board announcement
Source: Great Lakes ADA, 6/29/04. Annual Conference for the Turner Syndrome Society of the United States By Linda Bennett The Turner Syndrome Society of the United States (TSSUS) will be hosting its Annual Conference from July 30 through August 1 in Seattle, Washington. A wide range of informational and social activities will be available for all ages. All girls and women with TS and their families are encouraged to attend this conference to learn more about TS, meet other people who are affected by TS, and gain informational and supportive contacts. TS is a chromosomal condition which describes girls and women with common features that are caused by partial or complete absence of one of the X-chromosomes. Some of the primary characteristics of those with TS include short stature, ovarian failure, scoliosis, and flat feet. Several of the associated medical risks for those with TS include cardiac abnormality, increased risk for hypertension, kidney abnormalities, hypothyroidism (low level of thyroid hormone), frequent ear infections in childhood, and hearing loss in adulthood. Treatments for TS include growth hormone therapy and estrogen therapy. Treatment should be individualized to each person, and doctors, patients, and families should decide on these treatment options together. The 2004 Annual TSSUS Conference will include a wide range of workshops and activities for adults, teenagers, pre-teenagers, children, and parents. Topics will address issues across the Turner Syndrome lifespan, including the following topics:
The TSSUS has twenty-two chapters in the U.S., which serve as support and educational groups for TS individuals and their family members.
Turner Syndrome Society of the United States (800-365-9944)
Patient advocate information
Rent-assistance effort aims to make homes affordable By Anne Marie Apollo In Kane County, Illinois, the average monthly rent for a three-bedroom apartment is $1,160. For many working families to afford to live there, though, it would have to be closer to $980. A government program for which the county is now eligible may help close the gap. Funding a rental assistance program for area tenants is one of several ways a consortium recently formed by Elgin and Kane County may choose to spend about $750,000 they expect to get annually from the U.S. Dept of Housing and Urban Development. Before they craft a five-year plan governing how the cash will be distributed however, the city and the county will hold a series of public forums to gather information from the residents on what the current housing picture is like in the area, and suggestions on how it can be improved. Scott Berger, program manager of the county's community development program, said those who attend the forums will hear an overview of two programs aimed at helping low- to moderate-income families: the Community Development Block Grants that the county and area towns have been receiving for years and the Home Investment Partnership program funds for which they are newly eligible. Kane County gets $1.4 million in CDBG cash from HUD each year. To get an additional $750,000 each year for the Home Investment Partnership, the county and Elgin had to form the consortium, which they did in May. Berger said that money can be used for rehabilitating housing, home-buying assistance, adding affordable rental housing and rent-subsidy programs. "We can do any or all of them," he said. "That's part of what this process is all about." The consortium will start receiving money from the Home Investment Partnership program next summer. The consortium will develop a five-year plan based on the feedback it gets at the forums. That plan will provide a committee of 10 people guidelines for how to distribute the cash. It also will help the county decide how to distribute its Community Development Block Grant allocation. Amy Coyne, Elgin's CDBG coordinator, said the city will continue to administer that program on its own. For years, Elgin has put the biggest share of its CDBG cash toward rehabilitating its older housing stock, a cause Berger said he expects will be a major beneficiary of the Home Investment Partnership funds spent here as well. As part of the five-year plan, the consortium will conduct a study of the county's housing market to see what affordable housing the area has and what it needs. There won't be one answer for the entire county, Berger said. Even before the study is complete, those working on it know that in Elgin, the issue is more likely to be rehabilitating older properties, he said. In other areas, housing may need to be built. Affordable housing means rent or mortgage of no more than 30 percent of a low- to moderate-income family's total gross income, Berger said. Under HUD guidelines, a low-income family of two in Elgin is defined as one with an annual income of about $30,150. A middle-income family of four would bring in about $57,500. The numbers mean a great many working families may qualify for the programs the HUD funding will create, Berger said. For example, he said, median home value in the area is $160,000. A nurse making $50,000 can afford to make payments on about a $150,000 house, if she put the suggested 30 percent of her income toward her mortgage, he said. In that scenario, $10,000 stands between her and an average house. "It's that gap we're talking about filling," Berger said. Source: Beacon News, 6/21/04. Eden Supportive Living offers new options for Chicago's north side residents A newly renovated apartment building may be the answer to your frustrations about housing. Eden is the first supportive living facility of its kind, offering apartments to physically disabled individuals ages 22 to 64. Eden offers a completely innovative approach to assistive living housing. By combining apartment-style housing with personal care and other services to facilitate activities of daily living, Eden offers independent living while enjoying the freedom of a 24-hour supportive staff. For more information or an application, contact Elaine Berndes at 773/472.1020. Life after the nursing home: Peoria-area disabled residents transition to community settings By Clare Howard At 40, Antone Scroggins felt trapped in a nursing home, in despair over ever getting out. Others there were younger than he. Some had given up hope. Some watched with joy and envy when Scroggins found an exit. That was 11 months ago. Now Scroggins, who is paralyzed, lives in his own apartment and has a personal assistant who helps him about 35 hours each week. He's looking forward to job training later this summer. The new living arrangement cuts his expenses and his government assistance by more than half. Scroggins and 40 others in the Peoria area have saved the government $1.5 million over the last three years by moving out of nursing homes. By some calculations based on information from The Arc of Illinois and the Illinois Network of Centers for Independent Living, Illinois is losing $511.5 million a year because of misdirected funds and lost revenues due to policies restricting physically and developmentally disabled residents of the state. The disabled receive assistance with living expenses primarily from federal and state sources. Even during a severe fiscal crisis, Illinois ranks among the top in the nation for expensive institutional care for people who don't want it, don't need it and struggle to find a way out, said INCIL executive director Ann Ford. "It's not natural for a guy like me living in a nursing home with people my grand-parents' age,'' said Peorian SeDric Britt, 28, paralyzed from a gunshot wound. Britt, now in his own apartment, initially was discharged from the hospital into a nursing home. For Peorian Daniel Cronin, 18, a nursing home was not an option because he has pronounced developmental disabilities and is nonverbal. His parents kept him home as long as they could. They refused to consider a state institution with costs averaging about $135,000 a year. They believe their son has a better quality of life in a community-based group home costing about $46,000 a year. He moved into a group home last summer on Shoshone Road with three other men with autism. In Illinois, the odds are great that people like Cronin, Britt and Scroggins with physical or mental disabilities will end up in nursing homes or institutions despite the higher costs and lower quality of life, Ford said. "I'm not going back," Scroggins said, sitting in his wheelchair at the kitchen table in his apartment off Glen and Knoxville avenues. "I'd only go back if I end up hanging by a string, and I don't plan on that." Despite dwarfism and spinal stenosis, a constricting of the spinal canal, Scroggins graduated from Richwoods High School in 1983 and had a job in fast food when he suffered a paralyzing stroke. He lived briefly with a sister and then ended up in a nursing home on government assistance. Most states are decades ahead of Illinois in transitioning people from nursing homes and institutions to smaller community settings, said Robert Gettings, executive director of the National Association of State Directors of Developmental Disabilities Services. Illinois, he said, is suffering financially because it lacks infrastructure to facilitate this transition. Illinois does not qualify for the maximum Medicaid reimbursement from the federal government for expenses incurred by people with disabilities. Most states already have successful models ripe for copying, Gettings said, noting that successful states have local management for contract providers. Even if the state keeps control, as in New York, there are local offices for community oversight. When a community placement doesn't work, the local organization has a priority to develop another community setting that does work. "In those states, a person never has to go back to an institution," Gettings said. Developing the infrastructure for this kind of support requires coordination among local and state organizations, and that may cost something up front, but savings accrue long-term with a local system, Gettings said. "It takes commitment to do that," he said. Tony Paulauski, executive director of the not-for-profit Arc of Illinois, said institutions were never a good choice. "We knew very quickly that institutions were not good for people. Institutions are grisly. But change is coming slowly to Illinois," he said. "There are so many progressive changes in the field. New technology means more and more independence is possible, but we are not putting into practice what is possible." Forces keeping institutions alive, he said, are unions and family of elderly residents who have lived in institutions for decades and fear change. "Compare institutions with group homes. Neglect and abuse are far greater in institutions," Paulauski said. He and other advocates have been in Springfield nearly full time during the budget debates this spring. "For the first time ever, we have legislators who understand our issues,'' said Ron Wisecarver, former executive director of Parc, 1913 Townline Road, who saw the agency's budget shrink 32 percent in purchasing power over the past decade. Parc operates 25 group homes in the Peoria area. "What's wrong with the system in Illinois is that a system was never devised," Wisecarver said. "It's put together and was never thought out. We're the only state that never designed a system and makes due with a hodgepodge of solutions." Wisecarver said placement in an institution for people with developmental disabilities costs, on average, $135,000 per person per year, compared with $46,000 per person per year for placement in a group home. Costs for a nursing home typically exceed $36,000 a year, compared with $25,000 to live independently with a personal assistant, said Ford, who oversees a statewide network of not-for-profit organizations. Using those figures for nursing home placements, a savings of $11,000 a year per person for 12,000 people comes to an annual savings of $132 million. The $89,000 annual saving for a group home rather than an institution for the 3,000 people remaining in state institutions comes to $267 million. Ford said those figures give a rough idea of the cost of residential placement that is too restrictive. In addition, she said, lost wages and taxes must be calculated. If just half of the targeted population secured entry level positions, that would generate a $112.5 million payroll, she said. "I remember several years ago when a multimillion renovation was debated and secured for a sports complex in Chicago. I heard a report on the news quoting legislators who said they were so proud Illinois ranked at the top in the country in sports facilities," Ford said. "Do they feel proud that Illinois ranks among the three worst states in the country when it comes to services for people with disabilities?" Two institutions in central Illinois, Zeller Mental Health Center and the Lincoln Developmental Center, closed recently amid controversy. State Rep. David Leitch, R-Peoria, coordinated efforts after Zeller closed. Leitch also is a member of a special House committee studying placement and funding for the disabled. The special committee was formed by Speaker of the House Mike Madigan, who pledged, "We are not going to balance the budget on the backs of people with disabilities." Leitch said, "Earlier (budget) proposals could have been devastating to Parc. We need to do a better job moving people into community settings." State Rep. Ricca Slone, D-Peoria Heights, said, "A switch to capture more Medicaid funds is clearly needed to get more (federal) funding into that system." Despite cost savings, there are 300 vacant spaces in the state for independent living facilities, Leitch said. "What we have is an old-fashioned system, a bloated bureaucracy, versus money going to people who need help at the community level," he said. The community level in Peoria includes Central Illinois Center for Independent Living, 614 W. Glen Ave. Executive director Melody Reynolds said her agency has saved the government $1.5 million in the last three years by helping 40 people, including Scroggins and Britt, move out of institutions. Jodi Scott heads the program at Central Illinois Center for Independent Living that reintegrates people out of institutions and into community living. Scroggins remembers his first visit from Scott. "I said 'Yeah, yeah, OK, right, whatever,'" he recalled, shaking his head. "She came to see me three times before I could believe this. I knew I didn't belong, didn't fit in a nursing home. You see people there off by themselves crying. I tried to give them a smile and a hug, but a lot of people in nursing homes just give up. They are told they can't live on their own. The best way I can help them now is to tell people about the program that got me out. "A nursing home is the last resort for people. The next step is the graveyard. People are there who don't need to be. I left five or six young guys behind. If I can help them get out, I will talk, I will write, I will be their wheels and all doing whatever I can." Scroggins expects to start a training program this summer to learn how to become a relay operator, translating phone messages for the deaf. Ford has studied residential placement in the state in her position with the Illinois Network of Centers for Independent Living. She said Illinois ranks 47th out of the 50 states in percent of spending for community-based housing. The state historically has not secured all the federal Medicaid funding it is eligible for, she said. "What's the holdup? The nursing home industry wants to keep residents, not move them out," she said. "In our state, there are 12,000 people under age 64 in nursing homes because of disabilities." Scroggins said after government assistance for his nursing home charges, he'd have $30 a month for spending money. Britt, shot in the back on March 23, 2002, as he walked to his front door in Peoria, said few people would visit him in a nursing home. "No one likes to be there, not even to visit. A nursing home feels like your life is over. I was living with people the age of my grandparents, great-grandparents," he said. "Now I live alone. I have a personal assistant. I want a job. I want a wife and kids ... maybe adopted kids. My life is not over." His move from the nursing home was also coordinated by the Center for Independent Living. "I am never going to walk again, but I am grateful for the littlest things," he said. "My sense of smell is stronger. Touch is stronger. I'll probably always need some help, but I'll never go back to a nursing home. I'm grateful for that." Source: The Journal Star, June 7, 2004. August 6 event to explore the state of housing in Illinois for people with disabilities A Housing and Disability Rights discussion will be held on Friday, August 6th from 10 to 3 at the Chicago Public Library's Woodson Regional Branch at 9525 S. Halsted Street in Chicago. Learn about your housing options and rights as a tenant with a disability. Help create more housing options for people with disabilities. Registration begins at 10; welcome and introductions at 10:30, followed by a summary of Fair Housing Laws that affect people with disabilities in public and private housing. Lunch is at 12, followed by a group discussion and questions and answers. At 1:30 there will be a summary of housing advocacy efforts to improve housing options for people with disabilities. Refreshments will be provided; public transportation will be reimbursed. Reasonable accommodations will be provided upon request 48 hours prior to the event. This event made possible through a grant from the City of Chicago Department of Housing and the Sara Lee Foundation. If you need more information or wish to attend please contact Darrell Price at Access Living, 312/ 253.7000 x 194 (312/253.7016 TTY). Leading organizations call on governor to stop segregating people with disabilities [Five years after landmark Supreme Court ruling, Illinois trails nation in compliance.] CHICAGO — Citing evidence that Illinois trails the nation in guaranteeing the rights of its citizens with disabilities, the state's leading disability organizations issued two reports today calling on Gov. Rod Blagojevich to take decisive action to comply with the Supreme Court's five-year-old ruling in Olmstead v. L.C., which directs states to move their disabled populations from institutional to community-based settings. In Olmstead, handed down five years ago on June 22, 1999, the Supreme Court ruled that, under the Americans with Disabilities Act, the unnecessary segregation of people with disabilities in institutions is discriminatory. Further, states must develop a comprehensive and effective plan for identifying and placing individuals with disabilities in community settings. "The unnecessary institutionalization of people with disabilities is discrimination," said Marca Bristo, president and CEO of Access Living, which authored Shunted aside, hidden and ignored: A Blueprint to Implement Olmstead v. L.C. and End the Unnecessary Institutionalization of People with Disabilities in Illinois, a report jointly released by thirteen statewide disability organizations. "People with disabilities who live in integrated settings have been shown to lead more productive, independent and satisfying lives. Yet, five years after the Olmstead decision, Illinois stubbornly continues to institutionalize its citizens with physical, developmental and psychiatric disabilities at one of the highest rates in the nation." The organizations documented Illinois' poor record and laid out achievable and affordable ways for the State to comply, and showed how other states have successfully overcome barriers similar to those in Illinois to integrate their citizens with disabilities. "Our study shows that whether a state affords its people with disabilities the same rights as other members of society comes down to political will," said Zena Naiditch, president and CEO of Equip for Equality, which today released a report titled, Segregation or Community Integration: Ensuring the Civil Rights of People with Developmental Disabilities in Illinois. Equip for Equality is the federally mandated Protection and Advocacy System for people with disabilities in Illinois. Naiditch said, "From the day he took office, disability organizations have brought this crucial issue to the governor, to no avail. Today we unveil a roadmap for meaningful and achievable community integration as required under Olmstead." At a time when community living has been demonstrated nationally to lead to more independent and productive lives for persons with disabilities, Illinois is 42nd in fiscal effort for community spending for people with developmental disabilities, but eighth in fiscal effort for institutional spending, showing Illinois" misplaced priorities, according to the report by Equip for Equality. The Shunted aside, hidden and ignored study found that, for example, Illinois spends less than one-seventh the amount per capita that New York spends on community-based living for people with developmental disabilities. Changing successfully to a community-based model does not have to be more expensive, the groups said. The Equip for Equality report also found that states that have successfully achieved de-institutionalization and community integration were able to overcome special-interest pressures from local politicians, as well as unions and businesses who benefit from the continued institutionalization of people with disabilities. In addition, successful states were able to educate parents about the benefits of community living for their institutionalized family members, those families whose loved ones have made the transition to community-based living report that their family members are happier and more successful. Finally, in many states, litigation was a significant catalyst for change. "The issue of obstacles and costs is a smokescreen," said Ann Ford, executive director of the Illinois Network of Centers for Independent Living, speaking on behalf of the organizations that released the Shunted aside, hidden and ignored report. "Clearly, where there is a will, there's a way. Illinois can achieve better living conditions and enable people to contribute to society without spending more state funds than it would on institutional living. But the first step is for Gov. Blagojevich to seize the opportunity to bring about real reform by putting the interest of people with disabilities first." With proper planning and more consistent capturing of available Medicaid funds, Illinois could bring about dramatically improved results over a very short time period, the groups said. The organizations outlined these key steps: Establish a waiting list, using professionally appropriate assessments, to identify individuals capable of handling and benefiting from community life. Complete within one year Move people from institutions to community who are identified as appropriate for community life and who do not oppose transfer
The advocacy groups cite fundamental flaws in the state's current Community Services and Disability Plan, drafted in 2002 as a response to Olmstead. Specifically, it does not establish a procedure for ending the exclusion of people with disabilities from their communities; lacks assessment of individual capabilities to live in a community setting; has no benchmarks for moving people in to the community; and designates no method for paying for community services. "We believe that everyone should be able to live in the community and get the supports that they need, no matter what kind of disability they have," said Tia Nelis, President of People First of Illinois. "The State has not committed to preventing the unnecessary institutionalization of people with disabilities," said Bristo. "To the contrary, Gov. Blagojevich keeps pulling us in the wrong direction by pushing for more institutionalization. The current compliance plan only allows the State to stall without taking real action." In all states that have successfully achieved a strong community system, gubernatorial leadership has been a key and necessary ingredient, the groups said. "The Governor can either embrace change and enable people with disabilities to live in their communities with supports, or face the alternative of judicial enforcement of the civil rights of people with disabilities," said Naiditch. "I hope he takes this opportunity to bring Illinois into compliance with the ADA's 'community integration' mandate." Contact: Angela Wells at 312/735.7008. The reports released by the organizations can be found online:
Access Living
Equip for Equality
Governor puts clamps on health facilities board By Greg Hinz Gov. Rod Blagojevich on Wednesday effectively shut down the scandal-plagued Illinois Health Facilities Planning Board, prohibiting it from meeting or taking any official actions until he and lawmakers have a chance to remake the agency. "In light of recent allegations concerning the propriety of certain board actions, the governor hereby imposes a moratorium on all meetings and actions of the board until the board is reconstituted by law," an executive order issued by Mr. Blagojevich states. The order was needed "to protect the integrity of the process," said Cheryle Jackson, the governor's press secretary. Until reforms are put in place, the shutdown is "appropriate and prudent," she added. The board makes decisions involving multi-million-dollar hospital expansion projects that are critical in determining whether the projects are able to get financing. The governor's moratorium effectively cancels the board's planned Aug. 18 meeting and all other board activities, Ms. Jackson said. The order comes amid a federal investigation into charges that hospitals which sought approval for expansion projects were pressured to hire associates of board members. One board member has resigned since reports of the probe broke, a second asked not to be re-appointed, and two others have been the subject of media reports concerning alleged conflicts of interest in their board votes. In recent weeks, published reports have said a whistleblower lawsuit under seal in US District Court alleges that a financial power broker tried to use influence with the board to shake down a Naperville hospital. The suit alleges other use of improper influence as well, according to the reports. Mr. Blagojevich, who selected all the board members when the agency was remade last year, has not been accused of any misconduct. The governor has, however, accepted at least $45,000 in campaign donations for air travel from individuals linked to the scandal (Crain's, July 5). Both the House and Senate are considering bills to again restructure the agency. If the legislature fails to pass a bill, the governor will call on all remaining board members to resign, Ms. Jackson said. Source: Crain's Chicago Business, 7/7/04. Walgreen to make all stores accessible CHICAGO — Hailing the agreement as a major victory for Illinoisans with disabilities, Attorney General Lisa Madigan today announced she has reached a settlement with Walgreen Co. that will resolve a suit she filed last year alleging that many of the popular drug stores had barriers that limited access for individuals with disabilities. The settlement — the largest ever negotiated under the Illinois laws that govern access to facilities by people with physical disabilities — will result in new parking spaces closer to store doors, signs designating parking spots for consumers with disabilities, new curb cuts for wheelchair access, decreasing the slopes of existing curb cuts, moving obstructions such as concrete barriers and trash cans and other changes. The agreement was filed this morning in Cook County Circuit Court. Under the agreement, Walgreens will pay an independent monitor $150,000 to inspect stores in the chain in Illinois to ensure compliance with the agreement. All Walgreens stores will be made accessible to people with physical disabilities as required by state law. Additionally, Walgreens will pay $350,000 to settle the case with the Attorney General. Madigan said that as part of the agreement, Walgreens has created new accessibility policies to be applied to all of its more than 400 stores in Illinois. She added the changes will help ensure that customers with disabilities in Illinois will not face barriers such as steep ramps, blocked access to entryways and a lack of accessible parking spaces. "No customer should face barriers that are inconvenient and illegal. I commend Walgreens for working with my office to reach this settlement, which I hope will serve as a nationwide model." Today's settlement resolves a lawsuit filed by Madigan in the Chancery Division of Cook County Circuit Court on March 11, 2003. The suit alleged Walgreens' retail stores contained barriers to access for people with disabilities in violation of the Illinois Environmental Barriers Act and the Illinois Accessibility Code. Bureau Chief Lisa Danna handled the case for Madigan's Disability Rights Bureau. Contact: Melissa Merz at 312/814.3118, 877-844-5461 (TTY). Advanced Leadership for Youth To develop future community leaders, Access Living will launch a free, two-year advanced leadership training program for young adults with developmental disabilities. With the goal of affecting a more integrated and accessible society, the project was developed under an investment from the IL Council for Developmental Disabilities and will prepare 20 youths with disabilities to be active participants in the disability community and to engage others in taking action. The two-year training will incorporate six months of advanced leadership training, 5 to 10 hours a month of individual mentoring, and group-based leadership experience. As part of the group-based experience, youth participants will identify an inaccessible aspect of our society then develop and implement an action plan designed to remedy the inaccessibility. Each participant will be responsible for leading community members in a particular area of the campaign. "As the first generation of disability rights leaders age, it is vital that we continue to cultivate the leadership abilities of future leaders," said Amy Selders, the Advanced Leadership Project Training Coordinator. "This project actively engages young people with disabilities in the growth of the disability rights community." The application deadline for the Project, which begins in August, is Tuesday, July 13. For applications, contact Tuesday Dawson of the Chicago Arc, 312/346.6230, ext. 130, or Access Living. For more information, contact Sarah Triano at Access Living, 312/253.7000 ext. 108. Who votes in Chicago? Sixty-six-year-old women are the most committed voters in Chicago, concludes a computer analysis conducted by the Chicago Board of Election Commissioners. The study, which analyzed the March 16, 2004 Primary Election voter participation, found that 66-year old female voters had the largest turnout — some 55.27% cast ballots — compared to a city-wide average of 38.58%. The lowest turnout was by 22-year old males, with only 16.8% of those eligible casting ballots. The study, which covers all voters from 18 through 100 showed that in almost every age range, women scored higher in voter participation. First-time 18-year old voters scored comparatively high at 31.81% of eligible voters casting ballots. However, voting by 19-year olds dropped sharply to only 21.35% of those eligible actually voting. The analysis will help the Board target voter outreach programs more effectively. Chicago and Cook County buy new voting systems The Cook County Clerk's office and the Chicago Board of Election Commissioners have taken the first step toward acquiring new voting equipment that would replace the County's current punchcard system. The two jurisdictions (comprising more than 5,100 precincts and three million voters) have issued a joint Request for Proposal outlining the needs of future elections to more than 30 manufacturers and vendors of voting equipment across the country. The RFP specifies that any new system must comply with the Help America Vote Act, which states that all new voting equipment must come equipped with error detection technology. In addition, every polling place must have at least one voting machine that allows physically disabled voters to cast ballot independently and privately. To comply with HAVA, and to qualify for federal funds, the new voting system must be in place for the March 21, 2006, Primary election. For Sale: Scooter Motorized scooter will sell for $900 or best offer; it cost $2000 new. Still like new, it has never been used outdoors. It is made by Pride Mobility Products and is the model called Revo. Please call Maureen Flamm between 9 AM and 8 PM at 630/833.5262. | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
