DFN E-News: Vol. 2, No. 4
Disability in the News
- National Disability Coalition Opposes House Version of IDEA Bill (HR 1350)
- Senate Confirms Sutton in Spite of Opposition by Disability Community
- New York Medicaid Buy-In Program for People with Disabilities Will Start in July
- University of Pennsylvania Receives $1 Million for Students with Disabilities
- ERIC Clearinghouse on the Chopping Block
- Disability Rights Activists Force DOJ Meeting
Books, Reports and Articles
- A Report to the Nation on Independent Living and Disability by AARP
- New Book by Paul K. Longmore
- Study Finds Disabled Medicaid Beneficiaries Satisfied with New Program Allowing Them to Select Care Services
- Many Children with Mental Illnesses Placed in State and County Custody, GAO Report Says
- Senate Aging Committee Holds Hearing on Assisted Living Study
- Study Finds Further Outreach Needed to Expand California Working Disabled Medi-Cal Buy-In Program
- Two New Reports on People with Autism
- Study Educates Restaurant Owners About the Value of Marketing to the Disability Community
- Grassroots Advocate’s Perspective on Disability Funding
- Nominations, Applications, RFPs, Call for Comments
The Individuals with Disabilities Education Act (IDEA) is among the most important pieces of civil rights laws for children with disabilities ever passed in this country. This law guarantees a free, appropriate, public education to children with disabilities. It also supports needed services to infants, toddlers and preschoolers with disabilities and their families as well as supports to the education system that are critical for schools to meet their obligations to these students. Prior to its passage in 1975, at least 1 million children with disabilities in the United States were excluded entirely from the education system; many other children with disabilities were in segregated settings, had only limited access to the educational system and were therefore denied an appropriate education. Today, approximately 6.5 million children with disabilities receive appropriate early intervention, preschool and special education and related services thanks to the IDEA.
On April 30, H.R. 1350, the “Improving Education Results for Children with Disabilities Act,” was approved by the House of Representatives on a largely partisan vote of 251-171. This bill dramatically revises IDEA. The Consortium for Citizens with Disabilities Education Task Force — comprised of more than 70 national organizations representing students with disabilities and their families, teachers, related services personnel, program operators, state agencies and disability advocates — strongly opposes this bill.
On April 29, 39 national organizations hand-delivered letters to every member of the House expressing our continued strenuous opposition to H.R. 1350. In addition, parents all across the country expressed their opposition to the bill by placing calls and sending e-mails and faxes to their legislators. These actions followed the communication from some 14,500 parents, teachers and other concerned citizens who earlier this year expressed their opposition to potential changes to the current IDEA law, especially changes to the discipline provisions of the IDEA.
H.R. 1350, developed by Education and Workforce Committee Chairman John Boehner (R-Ohio) and Education Reform Subcommittee Chairman Mike Castle (R-Del.), significantly weakens services and supports for children and undermines their protections and rights. The bill became worse with the adoption of amendments that jeopardize the chances of children with disabilities to achieve an equal opportunity to a free, appropriate public education and would leave many of our most vulnerable children far behind.
For more information, please contact: Paul Marchand (202) 783-2229, Katy Beh Neas (202) 347-3066, Leslie Jackson (301) 652-2682, Jane West (202) 289-3903 or Stephen Spector (301) 306-7070.
On April 29, 2003, the Senate voted to confirm Jeffrey Sutton’s nomination to the United States Court of Appeals for the Sixth Circuit. The vote was close, 52-41, and went almost exclusively along partisan lines. Every voting Republican voted to confirm Sutton, one Republican did not vote. All but two voting Democrats voted against Sutton’s confirmation; Feinstein from California and Nelson from Nebraska voted to confirm. Six Democrats did not vote.
The disability community, Senate Democrats, and other coalition partners were strongly opposed to the Sutton nomination and confirmation. Just prior to the vote, over 150 disability activists crowded into a room in the U.S. Capitol to urge lawmakers to vote against Sutton. Tom Harkin, D-Iowa, told the crowd, “I need you out there reminding every Senator you see . . . a vote for Jeffrey Sutton is a vote to undo the Americans with Disabilities Act.” Although Sutton was confirmed, disability advocates agreed that the impact of their efforts was felt and their voices were heard.
Those who came out against Sutton questioned his propensity as a lawyer in private practice to attempt to limit federal civil rights protections and weaken protections for state employees with disabilities and older workers. They also questioned his philosophy and advocacy of States Rights. In a speech prior to the vote, Senator Patrick Leahy stated that Sutton “has a legal philosophy focused on limiting Congress’ historic role in protecting the civil and constitutional rights of all Americans. He has led an aggressive campaign to dismantle long-standing federal laws, enacted with bipartisan support, that have made this country more inclusive over the last half-century, and to close access to the federal courts for people challenging illegal acts by their state governments. As a lawyer in private practice, he has aggressively sought out cases to limit the power of Congress to enact laws protecting individual rights, and he has been dismissive of congressional findings and hearings supporting important federal laws. He has sought to weaken, among other laws, the Americans with Disabilities Act, the Age Discrimination in Employment Act, and the Violence Against Women Act.”
At his confirmation hearing, Sutton responded to early criticism by stating that he was acting on behalf of his clients and asked that his previous work as a lawyer not be held against him. “. . . I would be an objective judge,” he said. Those supporting Sutton said that he has a “brilliant legal mind,” and that he “believes thoroughly in the civil rights of all people.”
Sutton has, however, successfully argued and won many cases that not only eroded civil rights protections but also negatively affected the lives of real people. One such case was Patricia Garrett’s employment discrimination case before the Supreme Court, Garrett v. University of Alabama. It was successfully argued by Sutton and dismissed because her employer was a state entity.
The Albany Times Union reported that, after missing the proposed April 1 start-up of the long-awaited program that allows New Yorkers with disabilities to work full-time without losing their Medicaid benefits, Governor George Pataki assured the disability community that the program would be up and running by July. The program, which is New York’s version of the Medicaid Buy-In authorized under the Ticket to Work and Work Incentive Opportunities Act, will enable approximately 20,000 people with disabilities in New York to continue receiving health services after they become employed. Program participants can earn up to 250 percent of the poverty level — about $46,170 for a single person — and still maintain their benefits. Beneficiaries with annual incomes higher than $26,000 will have to pay a sliding-scale premium to continue to receive benefits. Pataki also announced that 15 community-based organizations would each receive a $10,000 grant to assist people who want to enroll in the program.
In addition, the governor established the New York State Most Integrated Setting Council to explore ways that people with disabilities can receive care at home and to make recommendations to ensure home health-care when possible. The council’s actions will be guided by principles laid out in the Olmstead Act. Access this story and related links online at www.kaisernetwork.org and see article below, “Study Finds Further Outreach Needed to Expand California Working Disabled Medi-Cal Buy-In Program,” for related news.
Philanthropy News Digest reported that The University of Pennsylvania received a $1 million donation from alumnus Jeffrey Weingarten and his wife, Susan, to enhance services and facilities for students with disabilities. The Weingarten Family Program for Student Disabilities Services will consolidate the Learning Resources Center, which provides academic assistance to all students, and Student Disabilities Services, which focuses on students with special needs. Both offices will move to a larger facility equipped with new state-of-the-art equipment. Weingarten serves on the European board of the university’s Warton School.
The U.S. Department of Education has issued a draft plan for a “New ERIC” system. According to some advocates, unless this plan is modified, there will be a dramatic change in the content of the ERIC database, and all 16 Clearinghouses and their services will be eliminated. This includes the ERIC Clearinghouse on Disabilities and Gifted Education (ERIC EC) — which has served the public since 1966.
If the proposed changes do not reflect your vision of ERIC, special education advocates suggest that you ask Secretary Paige and your legislators to change the plan to include all 16 ERIC Clearinghouses and their information services, user-friendly products and web sites and to continue comprehensive coverage of the education literature. For more information see www.cec.sped.org/pp/legislative_update/modules/news/article.php?storyid=21.
Activists from ADAPT shut down Constitution Avenue on May 12 in front of the Department of Justice (DOJ) forcing a meeting with Assistant Attorney General Ralph Boyd. Boyd was presented with a letter demanding that DOJ initiate action against states that violate the civil rights of people with disabilities by not providing long-term support services in the most integrated setting as required under the ADA and the Supreme Court’s Olmstead decision. The ADAPT letter stated: “The civil rights of Americans with disabilities are being violated on a daily basis throughout the United States. Thousands of people with disabilities and older Americans face unnecessary confinement in nursing homes or other institutions. Federal policies, which promote an institutional bias, have stolen the lives…of thousands of Americans.” Boyd agreed to continue meeting with ADAPT leadership on this issue.
On Mother’s Day, ADAPT members protested in front of the White House, demanding an apology from President Bush for the institutional bias in Medicaid that has “stolen their lives.” ADAPT is seeking support for passage of MiCASSA, the Medicaid Community-based Attendant Services and Supports Act, S.97, introduced in the Senate by Tom Harkin (D-IA) and Arlen Specter (R-PA) and in the House, H.R.2032 by Danny Davis (D-IL) and John Shimkus (R-IL).
This report takes an in-depth look at the roles of support services, family and community, and social and physical environments that enhance the independence of people with disabilities 50 and over. While most of the report focuses on “numbers” rather than narrative, the realities of living with disabilities is the backdrop. The report
- presents the results of the first national survey of people with disabilities 50 and older and their response to the question, what would make their lives better?
- presents newly available estimates on levels of disability and the use of support services;
- identifies new options for independent living that challenge the outdated stereotype that long-term care is synonymous with nursing home care; and
- examines the roles that housing, communities and transportation play in supporting the independence of people with disabilities.
Assessment of historical patterns and new data presents a paradox. Recent trends and innovations, along with the growth of the disability rights movement are helping many more people with disabilities to live independently. But people with disabilities 50 and older do not view their quality if life as improving. The report finds that already large gap in life satisfaction between older persons without disabilities and those with disabilities may be growing.
Key findings from the report include a new analysis of the federally sponsored National Long-Term Care Surveys and the Medical Expenditure Panel Survey and the results of a new AARP survey conducted by Harris Interactive. Following are a few of the findings.
- People with disabilities 50 and older — particularly 50-64 — strongly prefer independent living in their own homes to other alternatives. They also want more direct control over what long-term support services they receive and when they receive them.
- On the average, respondents gave their communities a “C+” as a place to live for people with disabilities.
- Inadequate health insurance is at the top of the list of problems experienced by people with disabilities 50 and older, including those with Medicare coverage. In addition to gaps in coverage such as the lack of coverage for prescription drugs, problems range from inappropriate care for chronic conditions to lack of coordination between medical care and long-term support services for people with disabilities. Both the quality and the cost of long-term supports are significant issues.
The report also includes recommendations for federal and state policy makers who wish to remove barriers to independence. For a full version of the report go to http://research.aarp.org/il/beyond_50_il_1.html.
Paul K. Longmore. Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University, 2003.
Longmore, one of the most respected figures in disability studies, writes, “Personal inclination made me a historian. Personal encounter with public policy made me an activist.” Whether writing about contemporary political activists or media representations of people with disabilities, Longmore demonstrates that the search for heroes plays a key role in the continuing struggle for people with disabilities to find a voice and shape their own destinies. His essays on bioethics and public policy examine the conflicts between disability rights activists and non-disability policy makers, healthcare professionals, euthanasia advocates, and corporate medical bureaucracies.
John Hockenberry writes, “Paul Longmore’s sharp and cogent criticism has always sought and found the soul of the disability rights movement. But these essays go far beyond activism and constitute a cultural document for a people adrift. Longmore’s refreshing views represent an intellectual Ellis Island for people with disabilities, hampered by bureaucracy, myth and sentiment, trying to find a place in America.”
To order call 1-800-621-2736 and ask for ISBN: 1-59213-024-0 (paper $22.95) or ISBN: 1-59213-023-2 (cloth $69.50) or contact Temple University Press at www.temple.edu/tempress.
Study Finds Disabled Medicaid Beneficiaries Satisfied with New Program Allowing Them to Select Care Services
Medicaid beneficiaries with disabilities are “much happier” and more satisfied under a new experimental program that allocates funds directly to patients to choose their own care services, according to a study published on the journal Health Affairs Web site. Under the “Cash and Counseling Program,” beneficiaries receive a monthly allowance equivalent to the amount that would have been spent under traditional Medicaid for authorized care. Beneficiaries have greater freedom in how they use the allowance: they may hire friends and family as caregivers, as well as purchase assistive equipment or home modifications to assist in their personal care needs.
The program is currently being tested in Arkansas, New Jersey and Florida. The study by Mathmatica examined the Arkansas program and was funded by HHS and The Robert Wood Johnson Foundation.
[Story from California Healthline, a news service of California Healthcare Foundation]
The Providence Journal reports that the General Accounting Office (GAO) recently completed a year-long study and issued a report on mentally ill children who were placed in state and county custody. The GAO surveyed state child welfare directors and juvenile justice officers in all 50 states — specifically focusing on Arkansas, California, Kansas, Maryland, Minnesota and New Jersey. The study revealed that in 2001 approximately 12,700 mentally ill children were placed in custody in 19 states and 33 counties. Sixty-five percent of these children were teenage males — many of whom were put into the state juvenile jail system. Parents often relinquish custody of children with mental illness because private health insurance plans limit coverage for mental health care and they cannot afford treatment and/or they do not know how to apply for assistance. The Journal also reported that parents with children who do qualify for Medicaid also release custody because Medicaid reimbursement rates are so low for mental health care that many providers do not accept program beneficiaries. GAO recommends that the Justice Department and the Department of Health and Human Services (HHS) implement a tracking system to monitor children released into state custody and that the Department of Education join with Justice and HHS to address the problem on state and local levels. For more information and related links, see www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_id=17298. A copy of the report is available online at http://www.projo.com.
Recommendations from the Assisted-Living Workshop Report, a federal study on assisted-living facilities, were recently presented to the Senate Special Committee on Aging. The study was commissioned two years ago to investigate the quality of care in U.S. assisted-living facilities. Nearly fifty groups of health care professionals, providers, consumer advocates and representatives of the disability community participated in compiling the report. Recommendations include
- creation of a National Center of Excellence in Assisted-Living;
- written disclosure of all assisted-living facility costs, services and policies;
- increased safety regulations;
- increased federal and state funding for the Long-Term Care Ombudsman Program;
- regulations to ensure that services advertised in brochures are consistent with those listed in residents’ contracts;
- expansion of state regulations for staff training for those caring for Alzheimer’s patients who live outside special care units; and
- better public assess to regulations, surveys and inspection reports.
The number of people residing in assisted-living facilities has increased dramatically (48 percent) since 1998 — to nearly 1 million and, although two-thirds of the states have legislation or regulations on these facilities, concern remains. Despite the list of recommendations, however, there was “little consensus” between the groups representing the assisted living industry, consumers and regulators, and the report did not present uniform standards for the industry. Story adapted from Kaiser Daily Health Policy Report. For more information, go to www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_id=17460.
A study of The California Working Disabled Medi-Cal Buy-In Program funded by the California HealthCare Foundation (CHCF) found that further community awareness is necessary to increase enrollment in California’s Medicaid buy-in program (see above for article on New York’s Medicaid buy-in). While the state Department of Health Services expected an enrollment of between 7.000 and 14,000, just 652 people enrolled in the two years of the program’s existence. Apart from expanded outreach leading to increased public awareness, the study recommended other program changes to attract additional people. See www.medi-cal.org/topics/view.cfm?itemid=20684 for a press release from CHCF and a link to the report.
Two reports have recently been released on people with Autism. “Autism: Rights in Reality,” published in England by the National Autistic Society (NAS) states that people with autism are not getting the support and benefits they need and are entitled to receive. People with autism and Asperger Syndrome generally don’t fit into standard ways of viewing and interpreting disability — nor do they easily fall within the eligibility standards used to measure their needs and the needs of their families. Important areas of support identified in the English report were social skills, play and leisure facilities, transportation, housing, advocacy and support for caregivers. The report concluded that many caregivers did not understand how to apply for benefits and/or complete the required forms. Those who had the greatest difficulty obtaining benefits were people described as high functioning, people in the transition age group (16-24 years) and people with the lowest household incomes. For more information go to the NAS Web site at www.nas.org.uk.
The other study, released by the California Department of Developmental Services, concerns the striking 97 percent increase in those seeking services for autism-related conditions. According to the Los Angeles Times, the study reported that the number of people seeking services rose from 10,360 in 1998 to 20,377 in 2002. Autism, now thought to be caused by both genetic and environmental causes, is now the fastest-growing disability served by the California Developmental Services Department. While the condition appears four times more frequently in males than females, the demand for services occurred among all ethnic groups. Reacting to the report, Ron Leaf, co-director of the Autism Partnership, said that greater awareness may have led to more correct diagnoses, but other researchers point out that exposure to toxic materials and viruses can “trigger the disorder in genetically susceptible children, and patient advocates are concerned about routine infant vaccinations as triggers. The report is available at www.dds.cahwnet.gov/autism/pdf/AutismReport2003.pdf.
A new study by Harris Interactive and released by The Open Doors Organization and other groups projects that people with disabilities will spend $35 billion dining out in 2003. One finding was that people with disabilities, who are much more likely to be unemployed and/or be in lower economic brackets than nondisabled Americans, have more impact on sales in full service restaurants (where they account for 15 percent of sales) than in fast-food restaurants (where they make up 10 percent). Harris Interactive interviewed 1037 adults with disabilities for the study. The Open Doors Organization is a nonprofit established to teach businesses how to succeed in the disability market and to provide direct support to people with disabilities. Go to www.opendoorsnfp.org/ for more information.
Writing in the Spring 2003 issue of Responsive Philanthropy, long-time advocate Barbara Toomer states, “No matter how many laws are passed to ensure the civil rights of people with disabilities, no matter how insistent people with disabilities are that disability is not the end of the world, there persists a perception among too many Americans that people with disabilities need pity more than they need equality, that their lives are a shambles and are unworthy.”
Toomer’s approach focuses on the disparate outcomes surrounding disability funding. Mainstream disability organizations that deal with medical issues and direct service provision tend to be well funded while little money goes to advocacy agencies that work to empower people with disabilities. Many groups and organizations committed to advancing the civil rights of people with disabilities have difficulty getting funded because they are seen as “destroying the system” when their goal is to make the system fair to everyone.
Often advocacy groups have to resort to alternative methods to get the funding they need to stage protests, bring issues to the public’s attention and advocate for policy changes. Barriers to funding for disability advocacy groups include United Way’s workplace giving programs; the Combined Federal Campaign’s professional auditing requirements; the federal government’s support to confining people with disabilities to nursing homes; state and federal control of funding for centers for independent living; and funding patterns that disproportionately favor health- and medical-oriented agencies. Taken together, says Toomer, these practices leave few funding opportunities for nonprofits that use alternative methods to advocate for fair policy changes.
Another challenge to the future of people with disabilities is in youth leadership-the next generation of disability leaders. There is, however, little funding to build leadership potential for the long-term success of the movement.
For the full article, go to the home page of Web site of the National Committee for Responsive Philanthropy, www.ncrp.org (the full spring issue can be accessed from the the homepage by scrolling down to the bottom).
Deadline: June 13, 2003
The Engineering Society of Detroit and the National Multiple Sclerosis Society, Michigan Chapter, have joined forces for the 2003 da Vinci Awards, an annual collaborative recognition venture to honor outstanding engineering achievements related to accessibility and universal design issues. The awards recognize individuals, organizations, and/or corporations in the engineering, construction, and technical realm whose design innovations have enabled people and improved accessibility. Achievements should exceed any legally mandated requirements, such as those expressed in the Americans with Disabilities Act or the Telecommunications Act of 1996.
There are potentially two types of submissions that can be applied to each nomination category — Product or Applied Research. Suggested nomination categories include, but are not limited to: assistive technology; commercial or public facility; information technology; materials; residential facility; personal mobility; and vehicular mobility. Facility entries must be completed projects. Preference will be given to facilities developed since 2001, and products that have recently entered into the marketplace. Applied research entries will be judged on their own “qualification” criteria.
See the Engineering Society of Detroit Web site for complete program guidelines and nomination form. Link to RFP www.esd.org/davinci/overview/index.html.
Deadline: September 26, 2003
The Criminal Justice Initiative (CJI) of the Open Society Institute supports individuals who will further its mission of reducing the nation’s over-reliance on policies of punishment and incarceration, and restoring discretion and fairness to the U.S. criminal justice system. Through three fellowships — Soros Justice Advocacy, Senior, and Media — CJI funds dynamic individuals from various fields such as the law, public health, community organizing and the media, to design and implement projects that will reflect and support the work of CJI’s programs.
Soros Justice Advocacy Fellowships
Awards of up to $98,200 are granted for two-year projects. This fellowship funds outstanding individuals from a variety of disciplines in order to initiate innovative projects that will have a measurable impact on issues underlying CJI’s work. The program seeks to identify and nurture new voices and advocates for change at either the local or national level. Advocacy Fellowships are two-year projects implemented in partnership with leading nonprofit agencies whose mission is related to criminal justice.
Soros Justice Senior Fellowships
Awards range from $50,000-70,000 for one-year projects. This enables experienced individuals-including activists, academics and community leaders-to raise the level of national discussion and scholarship, organize communities, and prompt policy debate on issues that are key to CJI’s work. The program seeks to identify and nurture leaders and advocates for change at the national and regional level. Fellows devote up to one year to research, write or initiate projects.
Soros Justice Media Fellowship
Awards are up to $45,000 for one-year projects. This program seeks dynamic journalists working in print, photography, radio, and documentary film and video to improve the quality and depth of media coverage of incarceration and criminal justice issues. The Fellowship funds projects that will further CJI’s mission of reducing the over-reliance on policies of punishment and incarceration in the United States, and restoring discretion and fairness to the U.S. criminal justice system. The program intends, through its awards, to mitigate the time, space, and market constraints that often discourage journalists from pursuing in-depth stories. Fellows devote up to one year to research, write, produce, and widely disseminate stories.
For application, eligibility and program information, see www.soros.org/crime.
The American Association of People with Disabilities (AAPD) and the National Organization for Women Foundation (NOW) are inviting workshop proposals for: “Women with Disabilities and Allies Forum, Linking Arms for Equality and Justice for All,” co-sponsored by the NOW and AAPD and held on October 17-19, 2003, at the Hyatt Regency Hotel, Bethesda, Maryland.
Workshop topics should address diverse populations/perspectives and include a plan of action. National as well as international perspectives are welcome. All workshops should be designed for skill building and/or involve one of the following issues: The State of Civil Rights and Political Activism in the Women’s and Disability Movements; Economic Empowerment; Healthcare and Caregiving; Emerging Leaders — Young Feminists and Disability Rights Activists; Violence Against Women; Abortion, Reproductive Rights, and Custody Issues; Aging and Disability; Lesbians with Disabilities; and Body Image. Electronic proposal submissions by e-mail are strongly preferred: firstname.lastname@example.org. For more information, visit AAPD’s Web site at www.aapd-dc.org.
The National Institute on Disability and Rehabilitation Research (NIDRR) invites input on revising its Long Range Plan (LRP) for 2004-2008. Dr. Margaret Campbell, NIDRR Program Specialist, notes that this is an opportunity to give valuable feedback to NIDRR on directions you think the agency should take and the ideas and themes it should adopt. She also states that the new Long-Range Plan will lay out the research agenda and identify the performance goals that will guide NIDRR’s priority development and research management for the next five years. NIDRR offers four methods of providing feedback:
- participation in national videoconferences;
- responding over the Web site;
- telephone comments; and
- regular mail.
For more information, go to www.ncddr.org/new/announcements/LRP_Announcement_0503.html.
In addition, NIDRR is also seeking public comment on a number of recently announced proposed priorities for related to the LRP core areas of
- Community Integration and Independent Living,
- Health and Function and
All of these priorities were published in the Federal Register on May 9, 2003, and comments will be due by June 9, 2003. To expedite the process, which was delayed this year, the final priorities and Notice Inviting Applications will be published before the end of the 30-day comment period for the Proposed Priority. This means that interested and potential applicants should start checking the Federal Register for the Final Announcement during the next two weeks. To review the proposed priorities and/or provide comments, go to the following link and click on the Proposed Priorities listed under May 9, 2003: www.ed.gov/legislation/FedRegister/proprule/index.html.
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