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Kessler survery finds ADA has not improved quality of life

July 30th, 2010

Many social and economic gaps still exist between the 54 million Americans with disabilities and those without, according to a survey conducted by the Kessler Foundation/National Organization on Disability. The report found that the disabled still lag in key areas such as employment, access to health care and socializing.

The survey shows that more must be done to help people with disabilities get ahead, said Carol Glazer, president of the National Organization on Disability.

“While education has improved considerably, joblessness has not. We as a nation must figure this out,” she said.

Some key findings from the survey:

• 19% of people with disabilities said they did not get the medical care they needed in the past year, with lack of insurance coverage cited as the top reason.

• 21% of disabled working-age Americans had a job in the past year, versus 59% for those without disabilities.

• 17% of people with disabilities have not graduated from high school, compared to 22% in 2000 and 40% in 1986 — the first year the survey was taken.

• 48% of people with disabilities eat out at a restaurant twice a month, compared to 75% of those without disabilities.

• 34% of disabled people say inadequate transportation is a problem, compared to 16% of those without disabilities, a gap that has widened 5 percentage points since 1986.

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President Obama orders the hiring of more people with disabilities

July 28th, 2010

As the country marks the 20th anniversary of the Americans With Disabilities Act this week, the Obama administration and Congress are taking steps to give the disabled greater access to federal jobs and technology.

Under a new executive order from President Obama, federal agencies will step up efforts to hire 100,000 disabled employees over the next five years. Ten years ago this month, President Bill Clinton laid out the same goal in a similar order, Obama wrote in Monday’s order, but “few steps were taken to implement [the order] in subsequent years.”

According to a report released this week by the Equal Employment Opportunity Commission, workers with targeted disabilities — including deafness, blindness, missing extremities, mental retardation and partial or complete paralysis — represent less than 1 percent of the federal workforce.

The order directs the Office of Personnel Management, in consultation with the Labor Department, the EEOC and the Office of Management and Budget, to design strategies within 60 days for recruiting and hiring disabled workers. Personnel managers at government agencies must be trained in employing the disabled. Agencies will then be required to develop plans for recruiting and keeping the workers.

The president also announced rules, being written by the Justice Department, to prohibit discrimination against the disabled by government agencies and private businesses. And beginning in 2012, all new construction must meet enhanced design standards for doors, windows, elevators and bathrooms. The requirement will have to be followed by stores, restaurants, schools, stadiums, hospitals, hotels and theaters.

The House, meanwhile, approved legislation that would make the Internet and television more accessible to the disabled.

The bill, which passed 348 to 23 and moves to the Senate, would set federal standards for the telecommunications industry requiring that online television programs be captioned for the deaf and mandating that telecom equipment used to make calls over the Internet be compatible with hearing aids.

The bill also would require buttons or similar devices on remote controls that access closed captioning on television.

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Obama proposing to enchance access

July 26th, 2010

By Jeremy Pelofsky, Rueters

The Obama administration on Friday proposed trying to enhance access for people with disabilities to websites for hotels, retail stores and other public sites as well as improve access to movie theaters.

Most of the proposals are aimed primarily at improved access for the deaf and the blind.

With the 20th anniversary of the Americans with Disabilities Act on Monday, the Justice Department issued four proposals for public comment aimed at finding ways to keep up with advancing technologies so people with disabilities are not left behind.

“Just as these quantum leaps can help all of us, they can also set us back — if regulations are not updated or compliance codes become too confusing to implement,” Attorney General Eric Holder said in a statement.

However, the proposals could draw criticism from the business community, which already has a rocky relationship with the Obama administration over issues including new regulations on the financial industry.

One key proposal focused on improving access for people with disabilities to websites of state and local governments as well as those sites of private businesses like restaurants, hotels and other commercial outlets.

Noting that the Internet has evolved substantially since the 1990 law went into effect, the department asked for comment on what resources are available to help those with disabilities access existing websites as well as what the costs would be for making them accessible.

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Virginia is one of only 11 states that have not shut down institutions

July 22nd, 2010

By Henri E. Cauvin, The Washington Post

On a barren tract that backs up to Interstate 64, past a street sign that says “Dead End,” sits the entrance to a home that no parent would eagerly choose for a son or daughter.

The Southeastern Virginia Training Center houses some of the state’s most profoundly disabled people, those who for decades had no option but to live in institutions.

Across the country, states have been closing such places for years, moving people with mental disabilities into community homes and out of the institutions that defined care of the developmentally disabled for much of the 20th century.

Yet the training centers, seen by some families as the only alternative for loved ones who have known little else, endure in Virginia, one of 11 states that have yet to close any of their institutions.

Southeastern, which houses 133 people ages 20 to 90, was going to be the first. But in a sign that Virginia’s path to deinstitutionalization will continue to be slow, the state broke ground last month on a $23.7 million project to replace much of Southeastern’s 36-year-old campus with a smaller, but still sizable, compound.

The fight to rebuild Southeastern has played out in painful, personal ways for families who have embraced the training center and families who want no part of it, all of them caught in a system with too many antiquated facilities and too little money for community care.

“We should close them all,” said Charles Hall, a local mental health official in the Hampton Roads area. “But Virginia is very predictably conservative when it comes to things like this.”

The state’s pace suits some parents just fine. Gene Sivertson leads the Parents and Friends of Southeastern Virginia Training Center, and for years he and his wife, Ann Marie, have been among its most ardent defenders.

The couple would not speak on the record about their efforts to keep Southeastern open. But in a short essay submitted this year to an advisory committee on the training center’s future, Ann Marie Sivertson argued that community care shouldn’t be the only option available to families such as hers.

“Realistically,” she wrote, “those of us who are blessed with abilities are tasked with the responsibility of providing care for those who cannot care for themselves. For SEVTC families, this Training Center is their ‘Choice’ for such care.”

Barbara Kimble said she understands the sentiments of parents such as Sivertson — even if she doesn’t agree with them.

“I don’t blame them,” said Kimble, whose 25-year-old son, Michael Ward, is disabled and cannot speak. “If that’s where my son was, if that’s where he had been from an early age, I would be afraid to take him out.”

Kimble, who lives in Chesapeake, has never visited the training center’s 97-acre campus. Even so, she is adamant that her son never see the inside of Southeastern.

Since 2006, Ward has been on a state waiting list for community services, which would allow him to move into a group home. “I’m sure he’d like to live somewhere other than with his mom,” Kimble said.

But with more than 5,000 on the waiting list, it’s hard to say when a slot will open up for Ward, who bags welcome packs for new Cox Cable subscribers through a vocational program.

“If something happens to me and my husband, where would he go?” Kimble asked.

She doesn’t have an answer. The idea of her child ending up in an institution just doesn’t seem right to her: “I don’t know, I guess in my mind, where is his right to have a life?”

Potent lobbyists

Nationwide, the number of developmentally disabled people in institutions has been falling for decades as the country’s attitudes and laws have evolved. The shift culminated in a 1999 Supreme Court decision that said “confinement in an institution severely diminishes the everyday life activities of individuals.”

Although several states have closed all of their large institutions, most still operate some. The number they house has fallen to about 33,000, from 186,743 in 1970 and 84,239 in 1990, according to the Research and Training Center on Community Living at the University of Minnesota. Virginia’s institutionalized population has been falling, too, albeit more slowly than in some states. About 1,150 people with developmental disabilities are spread among the state’s five training centers, including almost 170 at the Northern Virginia Training Center on Braddock Road. More than 400 are housed at the Central Virginia Training Center in Lynchburg, the largest of the state’s institutions and the subject of a continuing U.S. Justice Department investigation into care and treatment.

In Maryland, by contrast, the number of people in institutions is down to about 150 after the state closed its largest remaining facility, the Rosewood Center in Owings Mills, last year. And the District largely stopped relying on large institutions for the disabled after the court ordered the closing of Forest Haven in 1991.

When Mark Warner (D) took office as governor 2002, “it was clear that Virginia was behind,” recalled James Reinhard, who served as the commissioner of mental health under Warner and his successor, Timothy M. Kaine (D).

The Warner administration first proposed expanding community services and rebuilding Southeastern, which was the training center in the most disrepair. But Reinhard said that the sentiment shifted and that Warner and Kaine decided it should be closed.

Beyond the idea that the disabled shouldn’t be shut away, the savings were compelling: Caring for a resident in a training center today costs Virginia on average of $181,000 a year, while providing care in the community costs $110,000 to $143,000, according to the state.

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As budgets are slashed, many people with disabilities worry about services

July 21st, 2010

By John Leland, The New York Times

As states face severe budget shortfalls, many have cut home-care services for the elderly or the disabled, programs that have been shown to save states money in the long run because they keep people out of nursing homes.

Since the start of the recession, at least 25 states and the District of Columbia have curtailed programs that include meal deliveries, housekeeping aid and assistance for family caregivers, according to the Center on Budget and Policy Priorities, a research organization. That threatens to reverse a long-term trend of enabling people to stay in their homes longer.

For Afton England, who lives in a trailer home here, the news came in a letter last week: Oregon, facing a $577 million deficit, was cutting home aides to more than 4,500 low-income residents, including her. Ms. England, 65, has diabetes, spinal stenosis, degenerative disc disease, arthritis and other health problems that prevent her from walking or standing for more than a few minutes at a time.

Through a state program, she has received 45 hours of assistance a month to help her bathe, prepare meals, clean her house and shop. The program had helped make Oregon a model for helping older and disabled people remain in their homes.

But state legislators say home care is a service the state can no longer afford. Cuts affecting an additional 10,500 people are scheduled for Oct. 1.

“They yanked the rug out from underneath us,” said Ms. England, who lives on $802 a month from Social Security. “I’m scared. I’m petrified. I can’t function on my own. I took care of my husband for eight years. Already I’ve given up many of my freedoms. Now they’ve taken our dignity. I’d like them to try living in my body for a week.”

Her case manager, Brandi Lemke, shook her head. “This is not saving any money,” she said.

Ms. Lemke said she feared that Ms. England would “end up in the hospital because of the diabetes” and be in assisted living by the end of the year. “If she takes a fall,” Ms. Lemke said, “she may require more than assisted living can handle.”

Nursing homes here cost the state an average of $5,900 a month; home and community-based services cost $1,500 a month.

Other states have made similar cuts:

• Florida placed 69,000 people on waiting lists for home or community services last year, and more than 5,700 of them ended up in Medicaid nursing homes.
• Alabama cut housekeeping services — useful for people who can no longer do some cleaning tasks — for more than 1,000 elderly residents.
• Arizona sliced independent living supports and respite programs for family caregivers.
• Kansas, with a $131 million shortfall, will cut independent-living services for 2,800 people with disabilities in the next year.
• In Illinois, providers of Meals on Wheels have stopped adding clients because the state was not reimbursing them.

“I’m not getting a cost-of-living adjustment, and now I’m not getting food,” said Joyce Plennert, 83, who is on a waiting list for Meals on Wheels in Palatine, Ill. “Now I’m worried my home services will be cut. Without that, I’d be in a nursing home, if I could find one with room.”

Colorado, Mississippi, Missouri, Nevada, New Jersey, New York and Texas have all made cuts or frozen spending at a time when the elderly population — and the need for services — is growing.

In California, which faces a budget shortfall of $19.1 billion for the 2010-11 fiscal year, Gov. Arnold Schwarzenegger’s office proposed eliminating adult day health care centers that serve 45,000 people and in-home supportive services that help more than 400,000 elderly, disabled or blind residents. The Legislature rejected these cuts but has not yet produced an alternative budget. The state already cut Alzheimer’s day care centers and assistance for caregivers.

Because Medicaid regulations require states to provide nursing home care to receive federal Medicaid money, legislators often have more leeway to cut from home services. Advocates for the elderly and the disabled worry that these cuts are just the beginning, because state ledgers tend to recover more slowly than the national economy.

“The situation is grim, and it’s safe to say that present trends are expected to continue,” said JoAnn Lamphere, the director of state government relations for health and long-term care for AARP. “Nearly every state has proposed cuts of some sort to Medicaid. Some might seem small, but it’s death by a thousand slashes.”

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People with disabilities want to be treated like everyone else

July 20th, 2010

By Danielle Thomas, wlox.com

Children are children, and all children like to have fun. That’s the message that organizations that serve the disabled want the public to know. Their goal is that no child feels left out because he or she has a physical or developmental disability. Seventeen-year-old Zachary Zerone is impressive on baseball field, and he knows it.

“Got two trophies, swing hard, hit hard, and I run as fast as I can,” Zachary said.

Zachary is part of Biloxi’s Challenger League. The program is open to people of all ages with mental and physical disabilities free of charge. The city also offers soccer, basketball, a summer camp and more.

Assistant Parks and Recreation Director Cheryl Bell said, “I’ve always had the concept that I think they need to be involved like anybody else. The only difference is their disability.”

That message is important to Bell as the parent of a disabled child.

Bell said, “They want you out there everyday playing, everyday. They enjoy this.”

Shirley Lovelace is a team coach and a life skills teacher for special needs students at St. Martin High School.

“I think services are wonderful at this point,” Lovelace said. “I’ve been teaching special needs for 31 years, so I’ve seen it come full circle. From total exclusion to now moving toward total inclusion. It’s come the full circle.”

Janie O’Keefe remembers what disabled children faced just a few decades ago. When her daughter Kelly was born 1978, doctors weren’t optimistic about her quality of life.

“They actually gave me the diagnosis to take her home and love her. There’s nothing you can do,” said O’Keefe. ”Even the doctors were not encouraging an active life with her, so it was depressing.”

O’Keefe’s frustration finding recreational and educational activities for her daughter eventually led to the creation of Disability Connection. The non-profit organization has a board and is made up of two dozen organization that serve the disabled.

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More people with disabilities are becoming business owners

July 16th, 2010

By Sarah E. Needleman, The Wall Street Journal

David Shunkey is autistic and doesn’t speak. Around the start of the recession, he got laid off from two jobs. Now he’s trying to run his own business.

More mentally and physically challenged adults are looking to entrepreneurship as they get closed out of an exceptionally competitive job market, according to several organizations that help the disabled, including Community Options Inc., a nonprofit based in Princeton, N.J. of which Mr. Shunkey is a member. But in an economic climate that’s been tough on entrepreneurs, the disabled are no exception, and many face extra challenges.

“It’s more difficult for someone like David to obtain a normal job,” says Heather Gooch, one of several Community Options workers helping Mr. Shunkey build a dog-treat business with an $850 state grant from New Mexico, where his enterprise is based. “He needs close supervision.”

The unemployment rate for disabled workers was 14.3% in June, up from 9.3% two years earlier, when the Labor Department first began tracking such data for this demographic. In June, the unemployment rate for the rest of the U.S. was 9.4%.

Employment opportunities have historically been scarce for the disabled. Twenty years ago this month, Congress enacted the Americans with Disabilities Act, barring employers from discriminating against qualified job applicants with disabilities. Last year alone, more than 21,000 claims were filed with the Equal Employment Opportunity Commission against employers accused of violating the law.

With the poor economy further restricting employment options for the disabled, some organizations are seeing increased interest in programs designed to assist this group in starting businesses.

Applications for an entrepreneur boot camp for disabled veterans that’s offered through a network of six U.S. business schools have risen every year since the program’s inception in 2007, says Mike Haynie, its national director. This year he expects to receive more than 500 applications for the program’s 150 seats.

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Digital books make reading easier for everyone

July 14th, 2010

Brewster Kahle, a digital librarian and founder of a virtual library called the Internet Archive, has launched a worldwide campaign to double the number of books available for print-disabled people.

The Internet Archive began scanning books in 2004 and now has more than 1 million available in DAISY format, or Digital Accessible Information System, a means of creating “talking” books that can be downloaded to a handheld device. Unlike books on tape, the digital format makes it easier for print-disabled people to navigate books because they can speed up, slow down and skip around from chapter to chapter.

About 7 million books are downloaded by Internet Archive users around the world each month, Kahle says. With 20 scanning centers in the USA and eight in countries around the world, the archive scans more than 1,000 books a day from more than 150 libraries, including the Library of Congress— the largest library in the world that also offers online digitalized collections of books, articles and newspapers.

The U.S. government, foundations and libraries provide funding for the Internet Archive. To help with the campaign, Kahle received a grant from the city of San Francisco to employ 100 “digital technicians” who work to scan books that people and organizations are donating for the project. The technicians were all formerly unemployed or underemployed single parents.

Free access to books

The digital library contains everything from classical literature like Jane Austen’s Pride and Prejudice to books on business and money like Suze Orman’s 9 Steps to Financial Freedom to fiction best sellers like Twilight by Stephenie Meyer.

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Report finds major flaws with Social Security Administration’s process

July 13th, 2010

Read the report here.

Mother publishes cookbook to help increase her daughter’s independence

July 9th, 2010

By Josh O’Leary, Iowa City Press

Determined to help her daughter enjoy a healthy lifestyle when she moved out on her own, Betsy Riesz spent years creating recipes for her, eventually compiling a cookbook for people with disabilities.

“She’s not particularly impressed by this cookbook,” Riesz said. “She likes her familiar recipes.”

Riesz, an Iowa City resident, and co-author Anne Kissack, who lives in Wisconsin, have released “Let’s Cook! Healthy Meals for Independent Living,” which was published by Minnesota-based Appletree Press in January.

The cookbook is filled with easy-to-create recipes geared toward those with developmental disabilities, as well as young adults getting acquainted with the kitchen for the first time and seniors looking for simple dishes.

Although 38-year-old Sarah Riesz might prefer the time-tested cooking notebooks her mother has filled for her over the years, the new cookbook features large print, colorful step-by-step instructions and 54 healthy recipes. Among the dishes are some of Sarah’s favorites: tator tot casserole, chili and a variety of salads.

Betsy Riesz began compiling the recipes when her daughter, who has Down syndrome, was a teenager, knowing one day she would be living on her own and would need to look out for her own health. When Sarah was a student at West High, Riesz worked with her special education teachers to come up with basic recipes that Sarah and her classmates could practice.

After graduating, Sarah continued to cook at home under the supervision of staff from Life Skills in Iowa City, and her mother’s collection of recipes continued to expand. Sarah moved into her own supported living home in 2003 at age 30, and now, with help from Reach for Your Potential workers, she cooks meals two to three times a week for her two roommates.

“I wouldn’t say she’s an enthusiastic cook in the kitchen, but she knows that’s part of living, that people take turns cooking,” said Riesz, who coordinated a mentoring program for women at the University of Iowa before retiring a few years ago.

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