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Disability Inclusive Grantmaking is the mission of DFN: inclusion of disability in grantmaking programs and inclusion of people with disabilities in grantmaking organizations.

DFN E-News: Vol. 3, No. 7

Contents

In Memoriam

Hugh G. Gallagher Dies

Hugh Gallagher, noted author and disability scholar, died of cancer July 13. While working as an aide on Capitol Hill, he developed and drafted the language of what became the Architectural Barriers Act of 1968. His non-fiction work in the disability field includes FDR’s Splendid Deception (1985), By Trust Betrayed (1990) and Black Bird Fly Away (1998).

DFN in the News

DFN Featured in Equity Newsletter Article

DFN recently participated in a roundtable discussion, “Benefits to Inclusion: A New Market in People with Disabilities,” featured in Equity, a publication on disability and asset development published by the World Institute on Disability (WID). The discussion focused on the stereotypes, barriers and financial incentives of including people with disabilities in asset-building programs. The roundtable was coordinated by the World Institute on Disability and also included Steve Mendelsohn of the Law Health Policy & Disability Center, University of Iowa College of Law; and Deborah Kaplan, Kathy Martinez, Kevin Dalcamo and Megan O’Neil, all of the World Institute on Disability.

Several recommendations were made by the panel for further study. Jeanne Argoff, DFN executive director, recommended that financial institutions develop ties with disability benefits planners. The Social Security Administration (SSA) established a grant program called Benefits Planning Assistance and Outreach (BPAO), she stated, which was authorized by the Ticket to Work and Work Incentives Improvement Act of 1999. Although BPAO counselors are knowledgeable on a variety of benefits issues, they are untrained in areas of financial literacy and asset-building techniques. Further training and investigation of options for integrating financial institutions and benefits planning is needed.

To read the entire article, go to www.wid.org/publications/?page=equity&sub=200407&topic=fa.

Marca Bristo Addresses the Democratic Convention on the 14th Anniversary of the ADA

Marca Bristo, DFN board member and president and chief executive officer of Access Living of Metropolitan Chicago, wished the ADA “Happy Birthday” at the Democratic Convention in Boston on July 26. She told the audience that 54 million people with disabilities were gathering around the country to celebrate this historic civil rights law and the movement that brought the promise of one America to reality. Although there have been great strides, she added, the real promise of the ADA — inclusion, independence and equality of opportunity — still eludes many Americans with disabilities.

In a short address that stressed “progress slowed” and hope for the future, she noted that people with disabilities continue to languish in nursing homes and state-operated institutions, millions are denied protection under the law as courts define away their rights and abandon the principles upon which America was founded, and millions of children with disabilities are left behind as funding for the Individuals with Disabilities Education Act is denied year after year after year.

Rayna Aylward Named Chair of Washington Grantmakers

Rayna Aylward, executive director of the Mitsubishi Electric America Foundation and DFN board member, is having an active summer. Last month, she was elected chair of Washington Grantmakers, the regional association for the D.C. Metropolitan area. Last week, she was interviewed on “Disability Matters,” a talk show hosted by Joyce Benders on the Internet channel VoiceAmerica. “Disability Matters” is broadcast on Tuesdays from 2 p.m. to 3 p.m. and can be accessed at www.voiceamerica.com.

John Killacky Co-Edits “Queer Crips: Disabled Gay Men and Their Stories”

John Killacky, program officer at the San Francisco Foundation and a member of DFN, is co-editor of Queer Crips: Disabled Gay Men and Their Stories. Queer Crips features more than 30 first-hand accounts from a variety of perspectives, illuminating the reality of everyday struggles faced by gay men with disabilities in a culture obsessed with conformist good looks. Themes include rejection, love, sex, dating rituals, gaycrip married life and the profound difference between growing up gay and disabled and suffering a life-altering injury or illness in adulthood. Queer Crips is co-edited by Bob Guter and includes two performance pieces, poetry, essays and interviews.

For more information go to www.amazon.com/exec/obidos/tg/detail/-/1560234571/qid=1090270225/sr=1-1/ref=sr.

Disability News

Events Across the Country Mark ADA Anniversary

The 14th anniversary of the Americans with Disabilities Act (ADA) was celebrated in scores of events across the country. Below are just a few of these attended by DFN members.

In conjunction with the with the first day of the Democratic National Convention in Boston a dozen disability-rights organizations co-hosted an anniversary celebration emceed by Ted Kennedy, Jr. Held at WGBH Public Television in Boston, the event honored Democratic members of Congress who have been key supporters of the ADA. The first award was given to Senator Tom Harkin, co-author of the ADA in the Senate and longtime supporter of disability rights. Congressman Steny Hoyer was honored for his work on passing the ADA in the House of Representatives. A similar event honoring Republican supporters will take place in New York City at the Republican National Convention.

The event also honored many others, including Congressman Jim Langevin, a wheelchair user. Other awardees were Massachusetts Attorney General Tom Reilly, State Representative Thomas Kennedy, former Congressman Tony Coelho, Senators Mark Dayton and Christopher Dodd. Members of Congress included Lane Evans, Ed Markey, Nancy Pelosi, Earl Pomeroy, Jan Schakowsky, Bobby Scott and John Tierney.

In Washington, D.C., on July 22, AAPD hosted its annual ADA awards ceremony, which honors members of Congress and citizens who have made major contributions to improve the lives of people with disabilities. Among those honored this year were U.S. Representative Major Owens (D-NY) and writer/lawyer/advocate Harriet McBryde Johnson. Also recognized were the young participants in AAPD’s two internship programs: Congressional interns (sponsored by the Mitsubishi Electric America Foundation) and Federal IT interns (sponsored by Microsoft).

On July 25 the National Council on Disability (NCD) and the Kennedy Center cosponsored a reception featuring remarks to honor the NCD’s 20th anniversary along with the ADA’s 14th. The highlight of the evening was the presentation of the Justin Dart Freedom Award to former Senator Lowell P. Weicker, Jr., who met with NCD in 1987 and officially agreed to sponsor what became the ADA. Weicker, who has a son with Down Syndrome, was one of the disability community’s greatest advocates in the senate. Along with his sponsorship of the ADA, he played a pivotal role in ensuring that NCD continued to be funded in 1983.

On July 27 in Washington, D.C., the White House, the Technology Administration, the Office of Special Education and Rehabilitative Services (OSERS) and the U.S. Department of Commerce hosted an Assistive Technology Forum with exhibits and panels focusing on technologies and innovation in the assistive technology industry. A screening of Freedom Machines — a film supported by grants from a number of DFN members, including True North Foundation and Community Technology Foundation of California — was a featured event. Freedom Machines explores how human experience and technological innovations are outpacing social policies and the perceptions that guide such policies.

More than 600 people took part in the nation’s first Disability Pride parade in downtown Chicago on July 18. The event was co-organized by Sarah Triano in cooperation with the Mayor’s Office on Disability. Ms. Triano is a Paul Hearne Leadership Award recipient and head of youth programs at Access Living.

Emergency Preparedness Executive Order

Just prior to the ADA 14th anniversary, President Bush met with disability advocates, Secretary Tom Ridge and employees in the Department of Homeland Security to sign an executive order guaranteeing that the federal government supports the safety and security for people with disabilities in disaster situations — including earthquakes, tornadoes, fires, floods, hurricanes and acts of terrorism. The executive order also establishes an Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities that will help agencies, private individuals and organizations consider the unique needs of individuals with disabilities in their emergency preparedness planning.

Read the executive order and the functions of the new council at www.nod.org/content.cfm?id=1546.

[Adapted from a White House press release, 7/22/04.]

States Play Numbers Game with Special Education Students

The No Child Left Behind Act mandates that all categories of students, including those in special education classes, must show improved test scores or their schools can face penalties. A number of states are attempting to get around that requirement in a variety of ways. In Maryland, for example, education officials propose to include low-income special education students in the broader category of “children of poverty,” which would dilute their scores within the larger pool. Maryland is also proposing to exclude any group that makes up less than 15 percent of the student population at the district and state levels. According to a New York Times article, this would “largely eliminate both disabled children and those learning English from the federal law’s accountability system.”

Under the law, high poverty schools labeled “in need of improvement” for more than two years must spend up to 20 percent of their federal aid to send students to more successful schools or provide tutoring. Schools can even be closed after four unsatisfactory years. State officials voice concerns that including special education students and non-English speaking students in the count could result in school districts being penalized and labeled “in need of improvement.”

Outraged disability advocates and parents are concerned that special education students will not be part of the assessment process. State officials argue that there are sound statistical reasons for making such requests — that a larger number of test-takers are needed to attain reliable results. Disability advocates and parents believe that students with disabilities are being hidden and may be “written off.” So far, says the Times, “the federal government seems receptive to the states concerns.” It is already allowing more flexibility in four states, plus D.C. and Puerto Rico, and is expected to approve similar proposals in five additional states.

[Adapted from a June 7 article in The New York Times by Diana Jan Schemo.]

2002 Census Bureau Update for People with Disabilities

The U.S. Census Bureau recently released its 2002 Survey of Income and Program Participation (SIPP) for people with disabilities. All findings are for adults (people 15 years and older). Some statistics cited are:

  • approximately 23 million people (10 percent) had difficulty standing or being on their feet for an hour;
  • nearly 21 million (9 percent) had difficulty walking up a flight of 10 or more stairs; over 21 million (nearly 9.5 percent) had difficulty walking a quarter of a mile;
  • 9 million (4 percent) needed help for routine shopping trips or doctor’s appointments;
  • 4 million (2 percent) needed help walking inside the home ;
  • 5 million (2 percent) had difficulty taking a bath or shower; 5 million (2 percent) had difficulty getting in and out of bed;
  • 12 million, (nearly 5 percent of the population) use a wheelchair or electric scooter, a cane, crutches or walker.

For more information, go to www.sipp.census.gov/sipp/.

[Adapted from Steve Gold, The Disability Odyssey, majordomo@stevefoldada.com.]

ADAPT Successfully Lobbies Governors to Address Community Based Long-Term Care Options

The disability advocacy group ADAPT blocked intersections for five hours around the Westin Hotel, headquarters of the National Governors Association (NGA) summer meeting in Seattle. As a result, Pennsylvania Governor Edward Rendell agreed to introduce ADAPT’s long-term care resolution to the NGA membership. The resolution calls for reform of the Medicaid long-term care system so that people with disabilities would have the choice to receive services and supports in their own homes instead of nursing homes and other institutions.

Governor Rendell’s commitment to read the resolution to the NGA membership began a formal process to move the issue forward and set the stage for a vote on the resolution by the NGA membership at their February 2005 meeting. Other governors who agreed to discuss this issue with their local ADAPT constituency include Mississippi Governor Haley Barbour, Kansas Governor Kathleen Sibelius and Montana Governor Judy Martz.

For more information about ADAPT and reform of the Medicaid long-term care issue, go to www.adapt.org.

[Adapted from an ADAwatch e-mail alert, 7/19/04.]

Federal Jobs for People with Disabilities Drop

Over the last decade the number of federal employees with severe disabilities declined by nearly 20 percent. According to the EEOC, federal agencies employed 25,551 workers with significant serious disabilities in 2003 — a 19.8 percent decrease from 1994 when the number was 31,860. This steady decline far surpasses the 7.6 percent drop in overall civilian federal employment during the same period.

This downward trend was one of many issues highlighted in a new annual EEOC report on the federal workforce and is important because the federal government has striven to be a model in attracting and accommodating workers with disabilities. The Rehabilitation Act of 1973 banned discrimination against people with disabilities in federal hiring and required agencies to develop affirmative action plans to hire and promote people with disabilities. Analysts and disability advocates were surprised, and experts both in and out of the government say that they are not sure what accounts for the decline. Some theorize that more employees retired or left the government for jobs in the private sector. Others say that federal recruiting efforts have tapered off due to downsizing or that there may be fewer employees who disclose their disabilities.

[Adapted from a Washington Post article by Christopher Lee, 7/6/04.]

NY Court of Appeals Rules that Disability Insurance Policies Do Not Have to Provide Equal Coverage for Mental and Physical Conditions

The New York State Court of Appeals ruled 7-0 that disability insurance policies written in the state do not have to include equal coverage for mental and physical conditions. The case focused on a woman who alleged that she was discriminated against because her disability policy provided for only 24 months of coverage for chronic depression instead of the longer coverage for a physical injury, which would have given her up to 22 additional years of coverage until she could return to work or reached age 65.

In the opinion written by Judge Susan Philips Read, the court stated that the plaintiff was “not individually singled out for a shorter coverage period in a discriminatory manner.” Read said that the 24-month coverage provision in Polon’s policy “preceded her disability” and that New York’s anti-discrimination law is similar to laws in several other states, where courts have declined to mandate insurance parity for mental or emotional conditions.

Proponents of mental health insurance parity state that the ruling shows there is no choice but to pursue a legislative solution to mandate equitable coverage.

[Adapted from the Kaiser Daily Health Policy Report, 7/2/04.]

Out of 14 Countries, U.S. Has Highest Rate of Untreated Mental Illness

A recent study published in the Journal of the American Medical Association found that mental illness is “common and under-treated” in many countries — with the highest rate in the United States (26.4 percent). Nigeria had the lowest rate — 4.7 percent. Researchers from the World Health Organization and Harvard Medical School interviewed 60,643 adults from 14 countries to assess them for a range of mental illnesses, including obsessive-compulsive and panic disorders, bulimia, major depression, bipolar disorder, agoraphobia, post-traumatic stress syndrome, and alcohol and drug abuse.

Researchers defined eight countries as rich: the United States, Germany, Belgium, Italy, France, Spain, Japan and the Netherlands. Six countries were considered poor: Mexico, Colombia, Nigeria, Ukraine, China and Lebanon. The study found that in poor countries, about 80 percent of serious cases of mental illness were untreated and in richer countries, from 35 percent to 50 percent of cases had not been treated in the last year.

The most common disorders found everywhere except Ukraine were anxiety disorders, including panic attacks, phobias and post-traumatic stress disorder. Mood disorders, such as depression, were most common in the Ukraine. The lead researcher, Dr. Ronald Kessler, noted that societal variations in disclosing mental illness and language barriers could have resulted in lower rates in some countries.

To read the complete study, go to http://www.kaisernetwork.org/daily_reports/rep_hpolicy.cfm.

[Adapted from the Kaiser Daily Health Policy Report, 6/2/04.]

Many Children with Mental Illness Improperly Held in Detention Centers

In 2003 the House Committee on Government Reform surveyed 524 juvenile detention centers nationwide and found that 15,000 children with mental illness who faced no criminal charges were improperly detained in 33 states. The report also found that 2,000 children with mental illness (7 percent of all children in detention centers) remain incarcerated because they have no access to treatment. Some of the children are younger than 11 years of age.

Witnesses testifying at the hearing stated that children with mental illness are often incarcerated because their parents do not have healthcare coverage or access to treatment in schools. Dr. Ken Martinez of the New Mexico Department of Children, Youth and Families said that the report highlights “the criminalization of mental illness” as “juvenile detention centers have become de facto psychiatric hospitals for mentally ill youth.” Judge Ernestine Gray of the New Orleans Juvenile Court said, “It is a terrible miscarriage of justice to detain or incarcerate children in order that they might be able to have a chance of getting any mental health services . . . our detention facilities should not be used as substitute mental hospitals.”

[Adapted from a California Healthline Report, July 8, 2004.]

Official Theme for October’s National Disability Employment Awareness Month Selected

U.S. Secretary of Labor Elaine L. Chao has selected “You’re Hired! Success Knows No Limitations!” as the official theme for October’s National Disability Employment Awareness Month. For information, visit www.dol.gov/odep.

U.S. Department of Labor Partners with Disability Group to Increase Capacity of Support Professionals for People with Developmental Disabilities

The U.S. Department of Labor and the American Network of Community Options and Resources (ANCOR) are developing a pilot program geared to provide screened and trained direct support professionals to private providers of community-based facilities for persons with developmental disabilities. Read more at www.ancor.org/dev/Activities/NAC/DoLPilot0504.pdf.

CMS To Test Less-Restrictive Homebound Rules

The Centers for Medicare & Medicaid Services (CMS) unveiled a test of less-restrictive limits on homebound patients receiving Medicare benefits. The two-year demonstration project includes approximately 15,000 participants in Colorado, Massachusetts and Missouri. The project was initiated because CMS was frequently canceling benefits for homebound Medicare patients who left their homes too often or for unapproved reasons. One such case was David Jayne, an Atlanta man with ALS, who told lawmakers that his Medicare benefits were stopped when he left his home to attend a friend’s funeral. CMS Administrator Mark McClellan stated that the purpose of the project is to determine if Medicare costs would increase if homebound patients were allowed more freedom to leave their homes and whether home-healthcare providers would work with the changes.

[Adapted from a Disability Funding News E-Mail Alert, 6/3/04.]

New Coalition Promotes Internships and Mentoring Programs for Youth with Disabilities

A coalition of federal agencies, corporations, nonprofits and academic institutions has been established to promote internships and mentoring programs for young people with disabilities. Organized jointly by the U.S. Department of Education and the Mitsubishi Electric America Foundation, the Youth to Work Coalition has compiled a Program Guide to Internships and Mentoring Programs, which is available on the Web site of the National Center on Secondary Education and Transition: www.ncset.org/youthtowork. The Program Guide is a work-in-progress, so DFN members are encouraged to submit information about other programs, as well as to let others know about this new resource. For more information, contact Rayna at rayna.aylward@meus.mea.com.
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