Making Museums More Welcoming to Blind Visitors

A Newsweek article titled "Blind Spot" says museums are finding new ways to improve the arts experience for people with visual impairments.

The Americans With Disabilities Act of 1990 requires museums to make their facilities "accessible" to everyone, but ramps and Braille museum guides only go so far for people who are blind. A 2008 Department of Justice ruling has museums trying to determine what "accessibility" really means -- or should mean -- when it comes to the arts. Nina Levent, executive director of New York's Art Education for the Blind, said "'Accessibility' is not very descriptive. The issue is, do people come to museums to ride elevators and use bathrooms, or do they come to have a meaningful social and aesthetic experience?"

In previous posts, I've expressed disappointment that Kareem Dale, the first special assistant to the president for disabilities, was asked to split his time between disability issues and the arts. But this is an example of where his two roles fit together perfectly, especially because he is visually impaired himself. The article talks about his active role with museum administrators to find new ways to open the arts to all patrons. "We are working on all fronts to try to realize the promise of the ADA," he said on a conference call. "It was a bill of rights for people with disabilities, but the original intent has been lost over the last two decades. We will restore the ADA to its original intent, and the Department of Justice has been turned loose to go after people who are violating civil-rights laws. We have a lot of work to do."

Dale is also supporting a website called Project Access that will describe the accessibility of every cultural institution, stadium, theater, national park, and public venue in the country. Paula Terry, of the Office of AccessAbility at the National Endowment for the Arts, said, "This is the first time the White House has taken this very aggressive stance. I'm not sure what to expect, but I welcome it."

Duncan Outlines Federal Role in Education, Offers No Specifics on Special Ed

On Friday, Education Secretary Arne Duncan gave a speech he titled "Partners for Success" to the National Association of State Boards of Education in Cincinnati, in an attempt to build support for his plans to bring more innovation and accountability to our education system.

There's a lot to like about the speech, including an interesting overview of the federal government's historic role in education, even though (as he points out), "the Constitution doesn’t mention education, and...the provision of education has always been a state and local responsibility." But he goes on to say that our nation's leaders have "always believed that a strong and innovative education system is the foundation of our democracy and an investment in our economic future." And he lists examples, including the leadership of Presidents Lincoln, Roosevelt, Eisenhower, and Johnson.

He then lays out the core principles of his and President Obama's vision for creating the world's best education system by 2020:
- Creating high standards to prepare students for college and careers.
- Ensuring that every classroom has highly effective teachers.
- Implementing data systems to accurately track students from grade to grade.
- Turning around the nation's lowest performing schools, which Duncan called "2,000 dropout factories" that account for half the nation's dropouts and three-fourths of minority dropouts.

It's a good speech that clearly outlines his vision and his commitment to partner with teachers and all levels of government, but every time Sec. Duncan speaks, I look for a glimmer of hope that special education is even a remote priority for him. And once again, in a speech of nearly 3,000 words focused on K-12 education, the number of references to "special education" was an even ZERO.

At one point, he did briefly talk about the federal government's historic role in providing education for children with special needs, but only in a dismissive fashion. "Some have suggested that the federal government's primary responsibility is to provide money for the education of low-income students and children with disabilities. But the federal government needs to do more than that. We need to ensure that those students are receiving the education they need to prepare them for success in college and the workplace."

Michelle Diament of Disability Scoop put a positive spin on this single reference. Her article was titled "Education Secretary Won’t Accept Status Quo For Students With Disabilities." Maybe I'm just sensitive because I'm preparing for an IEP meeting for my daughter tomorrow, but I didn't see it the same way. Special education is more than a path to create more taxpayers. It's a fundamental right that our secretary of education does not seem to take seriously, unless it supports his rhetoric about standards and outcomes and achievement gaps.

That one reference in a speech of nearly 3,000 words -- with no specific plans -- does not diminish my disappointment in President Obama's selection of Sec. Duncan. I'll give him credit for appointing some very good people in his department, who I suppose are toiling away quietly maintaining federal programs that support students with disabilities, but those students and those programs don't seem to be on Duncan's radar. Sadly, the Children Left Behind in this administration seem to be those who require special education.

Read the transcript of his speech and see what you think. If I'm overreacting and you feel more positive about Duncan, please tell me.

Judge Overturns Cuts to Housing for Seniors and People with Disabilities in California

In a victory for disability advocates in California and nationwide, a federal judge today stopped California's plan to cut or reduce caregiver services for 130,000 disabled and low-income seniors. The $82.1 million cuts to the In-Home Supportive Services program were due to go into effect Nov. 1, which one disability advocate said would have caused a "humanitarian disaster."

Judge Claudia Wilken in Oakland imposed a preliminary injunction against the plan and is expected to provide more guidance soon. Her action today completely freezes the plan to cut services pending further hearings on arguments against the state's method for selecting who will and will not receive services.

Melinda Bird of Disability Rights California said: "We are convinced a humanitarian disaster would have resulted from the precipitous and arbitrary withdrawal of essential services approved by the legislature and the administration in the budget, and are delighted that the Court agreed with us."

The IHSS program pays in-home caregivers for seniors and people with disabilities through a combination of federal, state, and county money, with some contributions from recipients. Advocates argued that the state's use of a "functional index" score to determine who woul have their care reduced or eliminated was arbitrary and unfair. For example, people could get a good score if they can dress and feed themselves, but if they have memory problems or other mental conditions, caregiver support is critical. And obviously, providing these part-time services in the person's home is a lot less expensive than the alternative of institutionalization.

Read more from the Sacramento Bee.

To keep up with the proposed cuts in California, sign up for alerts from the California Disability Community Action Network at www.cdcan.us. You can see on their website just how hard they have been working -- and today's ruling demonstrates that grassroots advocacy works. For disability advocates, there are many more budget battles ahead, and not just in California.

HHS Secretary: Administration's Commitment to Autism Comprehensive and Historic

In an op-ed published this week, U.S. Health and Human Services Secretary Kathleen Sebelius calls autism research a high priority for the Obama Administration -- a priority "that has so far gone mostly unnoticed." She outlines the ways President Obama has made autism a focus of his presidency, such as releasing the first-ever strategic plan for government-funded autism research and adding $1 billion to his budget for autism over the next eight years.

Calling autism "an urgent public health challenge," Sec. Sebelius says that while legislation like the Combating Autism Act has been helpful, "there has never been a comprehensive, well-funded effort across government to overcome autism -– until now." Areas that need attention (as any parent, caregiver, teacher, or therapist knows) include treatment, insurance reform, education, and employment.

She concludes: "Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism. We still have more questions than answers. But with additional funding and a new coordinated national strategy, we are working harder and more closely together to find those answers than ever before." Read the op-ed.

How would you grade the administration on autism and disabilities in general?

President Calls for More Jobs for People with Disabilities

As part of National Disability Employment Awareness Month, President Obama has asked federal agencies to develop plans to increase employment of people with disabilities, but he didn't stop there. He also encouraged federal contractors to make disability employment a priority.

"Across this country, millions of people with disabilities are working or want to work, and they should have access to the support and services they need to succeed," the president said in a statement. "As the nation's largest employer, the federal government and its contractors can lead the way by implementing effective employment policies and practices that increase opportunities and help workers achieve their full potential. We must also rededicate ourselves to fostering an inclusive work culture that welcomes the skills and talents of all qualified employees. That's why I've asked the responsible agencies to develop new plans and policies to help increase employment across America for people with disabilities."

The president also announced several other initiatives, including a plan to have the Office of Personnel Management and Department of Labor's Office of Disability Employment Policy sponsor a day-long government job fair for people with disabilities in early spring 2010.

Listen to a report on Federal News Radio.

Sec. Duncan on Employment for People with Disabilities

Education Secretary Arne Duncan on National Disability Employment Awareness Month:

"President Obama and I recognize the critical role that education plays in empowering the next generation of Americans with disabilities. Through education, we can help people with disabilities build a strong foundation of knowledge and marketable skills with expectations for employment and the ability to give back to others in their communities. Stimulus funding under the American Recovery and Reinvestment Act represents an unprecedented investment in students with disabilities and demonstrates the administration's commitment to helping all Americans achieve success in school and work. We are proud of the many projects underway at the Department of Education to assist children and adults with disabilities in acquiring the tools they need to achieve their dreams."

To celebrate National Disability Employment Awareness Month, the Office of Special Education and Rehabilitative Services is featuring innovative, employment-based projects and individual success stories on its website.

What's in Store in Rio for Paralympians & Other Travelers With Disabilities?

When I profiled Chicago's bid for the 2016 Olympic and Paralympic Games, I guess I chose the wrong city. Today the International Olympic Committee announced that the 2016 Games will be held in Rio de Janeiro, Brazil. Chicago officials had promised the most inclusive games ever, in the most accessible facilities. They even had hoped to equip Chicago Stadium with 50,000 seats that could be converted into wheelchairs for use after the Olympics and Paralympics had ended.

What can Paralympians and other people with disabilities expect during the 2016 Games? A recent travel guide, South America on a Shoestring, advises: "Unfortunately, disabled travelers do not have an easy time in Brazil, Rio de Janeiro is probably the most accessible city for disabled travelers. The streets and sidewalks along the main beaches have curb-cuts and are wheelchair-accessible, but most other areas do not have cuts and many restaurants have entrance steps." You have to assume Rio and Brazil will improve accessibility over the next seven years in preparation for the big event, and there are other promising signs.

Official Support for Disability Rights. Brazil has signed and ratified both the UN Convention on the Rights of People With Disabilites (in 2007) and the optional protocol (in 2008). By contrast, the United States just signed the Convention in July and has yet to ratify it or to sign the protocol. I'm not saying the U.S. is not committed to the same principles, but I do give credit to Brazil for officially expressing their support.

Commitment. Not surprisingly, Rio 2016 demonstrated a strong commitment to the Paralympics, but they also demonstrated their support by hosting several recent events. When Rio hosted an International Paralympic meeting and competition in August, Carlos Arthur Nuzman, head of Rio 2016, said, "Rio 2016 positions the Paralympic and Olympic Games at the same level, with the same standards and with full integration between them. It will be an inspiring event, like our athletes."


Transportation. Rio has acquired 500 buses specially adapted for people with disabilities. By 2014, they expect every bus in the city will be accessible. In addition, Rio's bid claims: "Many sports facilities in Rio de Janeiro are already suitable for disabled people. The redevelopment of the Maracanã stadium for the 2007 Pan American and Parapan American Games left a legacy of improved accessibility: access by ramps, with seating space for wheelchairs and adapted bathrooms were all included to provide the best experience for people with disabilities."

A Generally Accepting Culture. Rio 2016 officials love to point out that Forbes recently named Rio "the world's happiest city." Part of that happiness is a general sense of tolerance and acceptance (though there are exceptions, including continuing reports of racism toward black people and others). For a firsthand view from an American with a disability Read this account of a U.S. student who uses a wheelchair and visited Brazil's Universidade de São Paulo to examine the conditions for students with disabilities. The author, Marie Sharp, stayed with another woman who used a wheelchair and had been at the university for 17 years as both a student a professor. Marie describes campus accessibility, student services, and housing and concludes: "Honestly, for some people it will be very difficult because São Paulo is not yet prepared for everyone. As far as cultural attitudes and perspectives are concerned, it is a very open atmosphere. Brazilians in general are willing to help -- sometimes too much -- and everyone in my program was very helpful."


Legal Protections. For information about laws protecting the rights of people with disabilities, read this detailed review by International Disability Rights Monitor, which also covers housing, education, health care, employment, and other issues. According to the latest census (2000), 14.5 percent of the Brazilian population, or about 24.5 million people, have some degree of activity or functional limitation. About 48.1 percent had visual impairments, 8.3 percent had mental impairments, 4.1 percent had physical impairments, 22.9 percent had mobility impairments, and 16.7 percent had hearing impairments. People with disabilities have the right to vote, but an estimated 80 percent of polling places are not accessible.

So mark your calendar for Aug. 5-21, 2016 (Olympics) and Sept. 7-18, 2016 (Paralympics). Rio has some time to prepare to accommodate the Paralympians and other travellers with disabilities, and hopefully that will improve conditions for Brazilians for years to come.

Tomorrow's Decision Day for 2016 Olympics/Paralympics

Tomorrow we'll learn if Chicago will host the 2016 Olympics and Paralympics. President Obama made a quick stop in Copenhagen to support the city's bid, but First Lady Michelle Obama is the one who's really making the case. She's meeting with members of the International Olympics Committee, as are representatives from the cities being considered -- Tokyo, Japan; Rio de Janeiro, Brazil; and Madrid, Spain.

As reported in Politico, "The city that wins the Olympic games also hosts the Paralympics, a competition for people with disabilities. The Paralympics aspect of Chicago’s plan is said to be one of strongest components of their $3.3 billion bid. Michelle Obama sees the Olympics as part of her broader portfolio as first lady.

Mrs. Obama said: "All I have are my stories, my experiences as a Chicagoan, as an American, as someone who believes deeply that health and fitness have got to play a greater role in the lives of our kids and our communities, and as someone who believes that the Olympic and Paralympic Games will be the best way to bring that message home."

It's interesting to look into the future and imagine the Olympics being held in Chicago in 2016. If President Obama can be reelected for a second term in 2012, the Olympics would be held in his final year in office, in the midst of a presidential campaign to choose his successor. Maybe while they shine a spotlight on the Paralympics, he and Mrs. Obama can announce their commitment to making disability issues a major focus of their post-White House days. We can dream, right?

Government Commits $100 Million for Autism Research

As reported in Disability Scoop, the National Institutes of Health is awarding nearly $100 million in grants to research the causes of autism and look for treatments. This is the largest ever commitment to autism research.

In all, NIH will award $5 billion to study cancer, heart disease, and other conditions. President Obama called the grants "the single largest boost to biomedical research in history."

Specifically, the autism research will study DNA of people with autism and their parents and look for ways to diagnosis the condition earlier, as well as risk factor from prenatal to early childhood. President Obama said, "What we learn will hopefully lead to greater understanding, early interventions, more effective treatments and therapies to help these children live their lives and achieve their fullest potential."

Disability Employment Awareness Month

October is National Disability Employment Awareness Month, and yesterday President Obama signed a proclamation that focuses on increasing employment opportunities for people with disabilities.

The proclamation states: "Each day, Americans with disabilities play a critical role in forging and shaping the identity of our nation. Their contributions touch us all through personal experience or through that of a family member, neighbor, friend, or colleague. We grow stronger as a nation when Americans feel the dignity conferred by having the ability to support themselves and their families through productive work. This month, we rededicate ourselves to fostering an inclusive work culture that welcomes the skills and talents of all qualified employees."

Read the proclamation.

Could Chicago Olympics Set New Standard for Accessibility?

According to an article in the Chicago Sun Times, if Chicago is selected next week as the host of the 2016 Olympic Games, Chicago Stadium could become the most "handicapped-friendly" venues ever built.

Specifically, city officials are working on a plan to convert up to 50,000 of the 80,000 seats in the temporary stadium into wheelchairs. After the Olympics, when the stadium is torn down, the wheelchairs could be donated to people who need them. Patrick Ryan, the CEO of the Chicago 2016 bid team, said, "It addresses a social issue where we can make wheelchairs -- privately funded -- available to people around the world with disabilities. There are still people around the world who still have to drag themselves because they don't have wheelchairs."

Credit for the idea is being given to Darren Brehm, who works for a firm consulting for Chicago 2016 and has used a wheelchair since 1990, when a car crash left him paralyzed. "It could change a lot of people's lives," Breman said.

The cost for the special seats? About $100 to $200 each. The entire cost of the stadium could be nearly $400 million, and the cost of the seats may require support from private sponsors.

Sounds like a win-win situation, don't you think? Now, let's see if Chicago gets that bid...

Duncan: "A Lot about NCLB and U.S. Education Needs to Change"

Here are Education Secretary Arne Duncan's prepared remarks for a Thursday speech on No Child Left Behind, the 2002 incarnation of the 1965 Elementary and Secondary Education Act, which is up for reauthorization.

From Duncan's remarks: "The biggest problem with NCLB is that it doesn’t encourage high learning standards. In fact, it inadvertently encourages states to lower them. The net effect is that we are lying to children and parents by telling kids they are succeeding when they are not."

I have to give credit for mentioning disabilities in a speech -- as far as I've seen, the first time he has as education secretary. Specifically, his remarks say: "Today I am calling on all of you to join with us to build a transformative education law that offers every child the education they want and need – a law that recognizes and reinforces the proper role of the federal government to support and drive reform at the state and local level....Let us build a law that brings equity and opportunity to those who are economically disadvantaged, or challenged by disabilities or background."

Duncan is also going to ask for input from stakeholders, which I hope will include special ed advocates and parents of children with special needs. "Over the coming months the administration will be developing its proposal for reauthorization," his remarks say. "Before we do, however, we want to hear from you. We want your input."

Stay tuned for an update after he gives the speech tomorrow.

Don't Forget the Paralympics

With Chicago bidding to host the 2016 Olympics, there's a lot of talk about what President Obama's role should be. One aspect of the story you don't hear as much about is the Paralympics, which will be held in the same city that hosts the Olympic Games.

Paralympian Linda Mastandrea is the director of Paralympic Sport & Accessibility for Chicago 2016. Mastandrea, who won gold and silver medals in Atlanta in 1996 and set a record in the 200-meter race, has also played wheelchair basketball in the 1992 Paralympics in Barcelona.

Mastrandrea says:
"What surprises people who have never seen Paralympic sport before is how strong and capable athletes are, how it doesn't matter whether you are missing a limb, your eyesight, or your ability to walk, you can be an amazing athlete. Sport is sport, whether it is played from a wheelchair, with a prosthetic or some other assistive device. Paralympic athletes have the same drive, the same will to succeed and to win, that athletes without disabilities have."

Read about the U.S. Paralympic team and the 2010 games in Vancouver, which will be held March 12-21, 2010.

Read more about the Paralympics and the Chicago bid at the Huffington Post.

Rationing or Better Care for Kids with Disabilites?

Easter Seals and Autism Society: "Health care will improve coverage for people with disabilities!"

Republican-sponsored parents: "Health care will kill people with disabilities!"

Having been active in special needs issues for five years now, I've seen that parents and other advocates can have honest disagreements about the appropriate approaches for treatment, education, and medical care. But the vocal minority who seem to oppose any form of health care reform come across as partisan, intentionally uninformed, and counter-productive to improvements that can benefit the people they most care about.

Read the Associated Press article "Rationing or better care for disabled kids?"

Officials at Easter Seals and the Autism Society say the proposed legislation would improve services for disabled children. And 40 groups that advocate for people with disabilities are on record as supporting the House Democratic bill. Jeff Sell, vice president for advocacy at the Autism Society, who has twin 14-year-old sons with autism, said, "I have seen nothing in the legislation that would lead to rationing of care for children with disabilities." Sell said the bill would actually improve care by eliminating annual and lifetime limits on coverage, as well as coverage exclusions for pre-existing health problems.

Reacting to some parents who claim that a "government takeover" will lead to their children being denied services, Sell added, "I am having a hard time following their logic of jumping to the negative instead of seeing possibilities."

Agree or disagree? I invite your comments.

A Guide to Employment for People with Disabilities

The job market is tough right now -- especially for people with disabilities. So for Labor Day, I won't waste your time with summaries or links to ceremonial speeches about the holiday and the importance of work in our society. Instead, here are resources that may be helpful to people with disabilities who are seeking employment. If you have other tips, please post them in a comment.

FOR JOB SEEKERS

Teleseminar: Using the Internet to Find a Job
On Sept. 16 there's a free teleseminar on "10 Secrets That Every Job Seeker with a Disability Needs to Know: How to Make the Internet Work for You When Looking for a Job." The seminar, led by Seth Acosta of the Sierra Group will share tips when posting a resume to an electronic job board. 1:00-2:00 EST. More information. The seminar is sponsored by One More Way, which is an interesting initiative to support employment for people with disabilites. Visit their website.

Resources from Disability.gov
Disability.gov is a great resource for people seeking employment, and for employers who want to know the laws related to disabilities. You can find information on:
- Career counseling
- Job training
- Job banks -- real jobs available right now
- Mentoring and internships
- Federal employment

Employment Locator
Career One Stop, an initiative of the U.S. Department of Labor, offers an employment locator that allows you to search for jobs by state and industry. I haven't used it -- if you have, share your thoughts.

Articles from Disaboom.com
Disaboom.com has partnered with JobsCentral to create a database of jobs available to people with disabilities -- visit DisaboomJobs.com. They also some excellent advice for people with disabilities in their employment section. For example:
- Finding employment with a disability during a recession
- Five crucial tips for acing an interview
- How to tell if a company is "disability-friendly"
- How to get hired from virtual volunteering

FOR EMPLOYERS

Disability.gov has an entire section on Employing People with Disabilities. It includes tips on recruiting and hiring, interviewing, workplace accommodations and supports, HR tools and resources, tax incentives, occupational health and safety, and more. Read success stories of solutions that have benefited companies and workers with disabilities.

How Will Supreme Court Decision on Special Ed Reimbursement Affect School Districts?

According to an article in the Chicago Tribune, a recent Supreme Court ruling on special education is expected to put additional pressure on school districts. The ruling says parents of students with special needs have the right to seek reimbursement from their districts for private school tuition, even if they have not first tried special ed program in their public schools.

Matthew Cohen, a Chicago attorney who specializes in disability law, said the Court's June decision "makes it clear that school districts...may be held legally liable for placements that the parents make on their own." Will these mean a stampede toward private schools? Probably not, because parents would need to pay tens of thousands of dollars in private school tuition -- and only then seek reimbursement. There's no guarantee they will be reimbursed, and it's unclear how those decisions will be made.

According to the Individuals With Disabilities Education Act (IDEA), students are entitled to a "free and appropriate public education." Districts have to pay for private school only if they have tried but failed to meet a student's needs.

As you can imagine, not everyone is happy about the decision that puts even more pressure on school districts. Mark Friedman, who recently retired as a public school superintendent in the Chicago area asked, "Where do you draw the line when class size is getting bigger and you only have X number of dollars? When you can educate five kids for the cost of one special ed kid? The community is not happy when we have dwindling resources, when there are 28 students in a class and we're spending $100,000 for one kid. That feeling is out there. I have heard it, I have felt it ... and this kind of ruling can create an even bigger divide."

How would you answer Mr. Friedman's question? Where DO you think the line should be drawn? How much is too much to educate a child with special needs?

CDC: Swine Flu Poses Higher Risk to Children with Disabilities

A new report on the H1N1 virus, also known as swine flu, has a particular caution to parents of children with disabilities. According to the Centers for Disease Control and Prevention, children with high-risk medical conditions or disabilities should be among the first to be vaccinated against H1N1 influenza.

CDC director Dr. Thomas Frieden said, "We also are recommending that all people with underlying conditions get vaccinated -- people who have asthma, diabetes, lung disease, heart disease, neuromuscular conditions, neurological conditions that increase their risk factors, and women who are pregnant." And high-risk children under 18 years of age should be rushed to a doctor at the first sign of the virus, Frieden said.

The vaccine is expected to be available by mid-October, and it's adding flames to the existing debate over the possible link between vaccines and autism. While there is no scientific evidence that vaccines cause autism, the debate over this issue is only heating up. It doesn't help that the H1N1 vaccine will be new and untested over time, and that reports (see Washington Post article) say many of the vaccines will have thimerosal, which contains mercury (which has been removed from many vaccines). Read what the CDC says about the vaccine.

As of Aug. 22, there had been 556 deaths in the United States associated with the H1N1 virus as of Aug. 22 -- and 42 were children under 18. Seven of the children who died were younger than 5, and 24 had underlying disabilities such as muscular dystrophy, cerebral palsy, or another medical condition.

Learn more and keep up with this special section of the CDC's website.

Unemployment Continues for People with Disabilities

We all know the economy is not showing any dramatic signs of recovery. But it's troubling that while job losses are slowing for the general population, the unemployment rate for people with disabilities reached a record high for the third month in a row in August. The rate is now 16.9 percent, compared with 9.3 for the general population. Read more from Disability Scoop.

Disability and Health Care Reform: A Firsthand Perspective

Writing in the Huffington Post, Ari Ne'eman, head of the Autism Self-Advocacy Network, outlines a number of issues that need to be addressed to ensure that health care reform does not leave behind adults and children with disabilities. I always appreciate Ari's passion and insights. Following is a summary of his key points.

Long Term Services and Supports
To get Medicaid support for basic services they need to survive, many people must live in nursing homes and institutions. "Both research and the experience of countless people with disabilities show that, with the right support, people can live in the community rather than be relegated to institutions. Community living settings, when properly implemented, improve quality of life, reduce the risk of abuse, make it more likely that a person with a disability will be able to work and are actually much less costly than institutional care....Medicaid's long-term care policy reimburses states for costly and segregated institutional care but makes it extraordinary difficult to use the same money to support adults in the community instead. A person who uses a wheelchair or an adult with a developmental disability such as autism or Down Syndrome can get the government to pay for a costly institutional placement with low quality of life, but often must spend years on a waiting list for far less expensive services, such as attendant care that could keep them in their home or their family's...."

"President Obama won kudos from the disability community by supporting the Community Choice Act during his campaign, but since then the White House has signaled that this issue will not be considered as part of health care reform. The Community Choice Act should be properly considered a civil rights issue, as it means the difference between segregation or integration for millions of disabled citizens as well as many senior citizens."

Health Care Disparities for People with Disabilities
"Too often, medical problems faced by people with disabilities are assumed to be normal and unavoidable as a result of being disabled. However, disability and ill health should not be considered synonymous. People with disabilities face significant barriers to access quality health care, due to both poverty and accessibility problems....Congress must recognize people with disabilities as an underserved population subject to health disparities by undertaking both data collection and serious policy reform to ensure that issues of access, expertise and coverage are address for the disability community."

Insurance Discrimination
While some states are addressing reform to mandate insurance coverage for autism and other disabilities, these efforts do nor represent comprehensive reform. Any health care reform must ensure insurance coverage for pre-existing conditions, including developmental disabilities.

Stop Discrimination in the Provision of Care
"Too often, people with disabilities are denied necessary -- sometimes even life-saving -- medical care because of assumptions that non-disabled people make about our quality of life. For many people, disability is still considered a fate worse than death instead of a part of the human experience. The eugenic impulse that views people with disabilities as 'burdens on society' or 'life unworthy of life' is still regrettably alive and well within our health care system....Americans, with or without disabilities, deserve not to be pitted against each other in their efforts to obtain the health care services they need. With limited resources, Congress will need to make difficult decisions -- yet discriminating against people with disabilities in the provision of health care services should never be considered an acceptable option."

Ari concludes: "Disability has often been called the great equalizer -- our community reaches throughout every racial, religious, gender and political classification. Furthermore, though we are wide and varied, including both people with acquired disabilities, such as many of our brave men and women in uniform coming home from overseas, and others who were born with their disabilities, such as myself and the rest of the autistic community, we can unite around our common dream for full participation, inclusion, integration, and equality of opportunity for all."

Read more.

Disability.gov: An Inside Look at the Government's One-Stop Shop for Disability Information

The recent launch of disability.gov -- actually a relaunch and upgrade of the previously named disability.info -- represented a huge leap forward in the federal government's service to Americans with disabilities. I had a chance to learn more about the site from Kevin Connors, a Department of Labor employee who serves as the program director for the site.

Q: How did DisabilityInfo.gov become Disability.gov?

A: After conducting several focus groups and getting feedback from visitors to our site -- including people with disabilities, family members, caregivers, veterans and many others -- we redesigned the site to make it easier to use and more interactive and useful to our audiences. We changed the name because it’s simpler and easier to remember. Disability.gov represents a new generation of online federal government resources that use social media tools to improve communication, interaction and feedback with visitors.

Q: Did the new administration initiate the idea for the redesigned site, or had it been in the works previously?

A: The disability.gov team began working on a plan to redesign the site last fall. The focus group testing we conducted was part of this effort. Certainly the new administration's acceptance of social media and enforced mandates about government openness and transparency helped us make decisions about what types of tools we wanted to offer, but the overall decision to make this move started with the disability.gov team.

Q: Since I’ve worked for the federal government, I’m amazed that one site can consolidate resources from 22 federal agencies. Was that as hard as it sounds?

A: Absolutely! Working with all the different agencies was a very labor-intensive process, but they were more than willing to participate in the development of the site. One of our first steps on the project was to meet with representatives from each agency to identify subject matter experts to be involved in the development and maintenance of the site, and to gather content for the site from them. We felt this was critical to the future success of the site as these are the people who have the in-depth knowledge about the programs and policies their agencies offer for people with disabilities. We continue to work with our partners to encourage their involvement, and identify new subject matter experts within the agencies.

Q: How does ongoing coordination work? Do each of those agencies have a point of contact who contribute content, or does a group meet on a regular basis?

A: Both. We currently have over 100 contributors that work with us on the site. Each of the agencies work a little bit differently, and we are happy to accommodate whatever setup is most efficient and easiest to implement for them. Some agencies choose to have one point of contact for the project, while others have as many as 20 subject matter experts representing the different operating divisions within those agencies.

We provide each contributor with training on how to upload content from federal agency Web sites to disability.gov using our administrative web tool. This tool allows our partners to add information to disability.gov when and how they choose. We monitor what is added and provide editorial oversight so that the site has a cohesive look and feel, but we felt it was important to put the tool directly in the hands of our contributors.

The disability.gov team meets with our federal agency contributors several times a year, and provides continuous support, coordination, and training via email and phone as well. Through the years, the disability.gov team has established long-lasting relationships with each of our federal agency partners, and this open communication has been the key to the initiative’s success.

Q: I’m sure the expectations for compliance -- for the hearing- and sight-impaired, for example –- are higher for a website like disability.gov than for any other site. How did you make sure the site met all people’s needs?

A: Disability.gov strives to be a leader in accessibility and usability. We work very hard to ensure that we not only comply with the law, but also go above and beyond simply what is required so that the site is accessible for all people. This should be the expectation for every website, not just sites specifically for people with disabilities. Our goal is to be a model for all websites, whether they are disability-related or not.

The disability.gov team tested the redesigned website using a variety of assistive technology software and on various machines with the many different browsers that are available. We also obtained feedback from users with a range of disabilities, some who use assistive technology and some who do not. In our testing, disability.gov exceeded the requirements set forth by Section 508 1194.22 by creating a website that is not only accessible, but also usable, by all visitors. The disability.gov team continues to improve site accessibility as we receive additional visitor feedback.

Q: I’m familiar with Section 508, which requires that federal agencies’ electronic and information technology is accessible to people with disabilities. Your site claims to also be compatible with Web Content Accessibility Guidelines (WCAG). How are these guidelines different, and what does that mean to the user?

A: Four Web Content Accessibility Guidelines Priority 1 checkpoints, 1.3, 4.1, 6.2 and 14.1, include elements that are either not covered in Section 508 or are slightly more stringent than Section 508 standards. If a website is 508 compliant and the site wants to be WCAG compliant as well, the designers must address these four checkpoints additionally. For example, at this time Section 508 does not specifically address audio description as a requirement for web-based media when the captioned text that is provided is not able to be navigated by screen reader software, but WCAG Priority 1, 1.3 does address this need. Meeting both Section 508 and WCAG guidelines provides an extra layer of accessibility and usability checkpoints, especially when it comes to Web-based multimedia and dynamic content on a site.

Q: Disability.gov is active on Twitter (twitter.com/disabilitygov), and you have a blog and a news feed. How is social media expanding access for people with disabilities?

A: Social media gives people with disabilities a platform to discuss their experiences, find answers to questions, and connect on a common ground. Disability.gov's goal when adding these social media tools was to encourage interaction and feedback with and among its visitors. We've added personalization to the site that didn't exist before, and we'll continue to find more ways to interact as we explore different social media options. Our main goal was to open up communication with our visitors -- we wanted to change from one-way communication to an actual conversation with our visitors.

The redesigned site represents a shift in philosophy from simply broadcasting information to having a true collaboration with the public. These new tools help disability.gov visitors quickly access the information they need and connect with others on disability-related topics. They also offer new ways to organize, share and receive information, and help create communities around subjects of common interest. Visitors can sign up for personalized news and updates, participate in online discussions and suggest resources for the site.

Q: Do you have plans to expand even more -– like a Facebook page or additional interactive features?

A: We will continue to look into adding new social media features in the coming months, and include the ones we feel are most in line with our goals and would be most useful and relevant to our audiences on disability.gov. Before we redesigned the site, we conducted extensive research on the different tools that are available and selected those we felt were the best fit. This is the process we will continue to use in the future. Our next phase is to add features that allow for personalization, and increase interaction among visitors with features like user forums.

Q: Speaking of Facebook, what are the challenges involved in using the latest technology while adhering to rules and policy affecting federal agencies? For example, President Obama was told he couldn’t use his Blackberry.

A: The government is currently developing policies that regulate what can and cannot be done. With the Obama administration, there is certainly a great deal of support for use of social media in order to make the government more open and transparent to citizens. The disability.gov team has moved cautiously into the social media realm. We conducted a great deal of research prior to the redesign, and met with several federal agencies that have been using social media in order to develop a set of best practices. We used these best practices, along with a thorough understanding of our audiences and the goals we want to achieve, to develop our approach to engaging in social media.

Q: What else would you like people to know about disability.gov?

A: Disability.gov is an important resource not only for the more than 50 million Americans with disabilities, but also for parents of children with disabilities, employers, workforce and human resource professionals, veterans, military families, caregivers, and many others. The site offers thousands of resources on disability-related programs and services from the federal government, as well as state and local governments, nonprofit organizations, and educational institutions. Above all, the mission of the site is to connect the disability community to information and opportunities.

Duncan Breaks Silence on Special Ed

Well, it took seven months, but yesterday Education Secretary Arne Duncan actually talked about special education. As I reported when President Obama first nominated Duncan, many disability advocates criticized him not for doing bad things in special ed when he oversaw education in Chicago, but for simply overlooking it as a priority. Over the past seven months, he's done little to reassure the disability community. His official bio doesn't mention special ed, and the issue has been absent from every major speech and interview he has given.

So yesterday was our first chance to hear how Secretary Duncan thinks special education may fit into his broader vision for education reform. Addressing a group of state special education officials in Washington, he asked for their support in developing state standards to make sure the needs of students with disabilities are met.

Since more than half of students with disabilities spend most of their time in general classrooms, Duncan asked, "How how do we make sure not just special education teachers, but every single teacher, can be a teacher of children with special needs?" He said he and his staff are seeking ideas from parents, teachers, and state officials. View video of his remarks.

Did he say anything that demonstrates innovative thinking or a commitment to making special ed a top priority? No. But I've been critical of Duncan for not addressing the topic at all, so I'll give him credit for meeting with this group and acknowledging the 6 million-plus students under his watch who have special needs.

Waiting Lists, Inadequate Funding for Disability Services -- and More Cuts on the Way?

I recently joined the board of the Arc of Montgomery County, which advocates for people with developmental disabilities and provides direct services to people from infants to seniors. Today as part of my orientation, I visited several residential, vocational, educational, and day care programs throughout the county. While I was impressed with the level of service these people are receiving and the dedication of the providers, I couldn't help but think of the nearly 20,000 people in Maryland who are on a waiting list for these critical services.

And even the existing services are in danger because of budget cuts. Even if you're not in Maryland, read this alert, "People with Developmental Disabilities at Risk of Losing Services." Whichever state you're in, people with disabilities are facing these same risks. With long waiting lists, people are already being denied services they desperately need. This is no time to make additional cuts.

Rhetoric Over Disabilities and Health Care Reform Heats Up

Disability Scoop has a nice summary of some of the disability issues at the heart of the health care reform debate. Read "Disability Issues At Center Of Heated Health Care Debate." Not surprisingly, former Governor Sarah Palin is at the center of some of the controversy -- which started when she seemed to suggest that President Obama would like to kill her son with Down syndrome. Specifically, Palin has said the plan would force people who are either old or disabled "to stand in front of Obama’s 'death panel' so his bureaucrats can decide...whether they are worthy of health care."

Whatever you think of Palin -- and I know many disability advocates like her a lot -- there is no denying the hypocrisy of suggesting that the president's policies (and, by extension, the president himself) are "evil" and that the president would support kill disabled children, and then calling for restraint and civility in these discussions. On her Facebook page, she wrote:

"There are many disturbing details in the current bill that Washington is trying to rush through Congress, but we must stick to a discussion of the issues and not get sidetracked by tactics that can be accused of leading to intimidation or harassment. Such tactics diminish our nation's civil discourse which we need now more than ever because the fine print in this outrageous health care proposal must be understood clearly and not get lost in conscientious voters' passion to want to make elected officials hear what we are saying. Let's not give the proponents of nationalized health care any reason to criticize us."

Huh?

I was pleased to see Michael Strautmanis, chief of staff in the White House Office of Public Liaison, step forward as the father of a child with autism. In the video below, Strautmanis says the plan would ensure that individuals won't be denied insurance coverage because of any pre-existing condition and would expand access to Medicaid. I've previously written about Strautmanis's personal connection, and I hope he'll continue his involvement in these and other issues important to people with disabilities.


Many disability groups are expressing support for the president's plan. United Cerebral Palsy has endorsed the health care reform bill, and the Arc is encouraging its members to "dispel the growing number of myths" about health care reform. In addition, the American Association of Disabled People has posted several facts from AARP to refute what it says are myths and lies. They include:
Fact 1: Medicaid not be ended, and no benefits or services will be cut.
Fact 2: No legislation currently in Congress would mandate the rationing of care. Period.
Fact 3: There is no provision of any piece of legislation that would promote euthanasia of any kind.

AARP goes on to say: "The rumors out there are flat-out lies. Right now Medicare does not cover counseling for end-of-life care. The portion of the bill in question would simply provide coverage for optional end-of-life consultations with doctors, so that the patient can be aware of all of the treatment options on the table. It is not mandatory and it has nothing to do with euthanasia."

National Down Syndrome Advocacy Day, February 2010

The National Down Syndrome Society has announced the first annual Down Syndrome Advocacy Day will be held on Capitol Hill Feb. 24-25, 2010. So technically, I guess it's "Advocacy Days" plural. Advocates will meet with elected representatives, learn advocacy tips, and connect with Down syndrome advocates from around the country. For information, visit the National Down Syndrome Society's website. You can also sign up for action alerts on Down syndrome.

Summer Means Camp -- for All Kids

Friday was my daughter Chloe's last day of summer camp -- a six-week program with 500 students, 100 of whom have some type of disability. The model is full inclusion. All kids do all activities, to the best of their abilities, and they learn from each other.

Since Chloe is non-verbal, we relied on daily notes to tell us how she was doing -- and every note assured us she was not only learning, but also having fun. My favorite story was when a child approached Chloe's counselor and asked, "Does she speak sign language?" The counselor said she understood a little, and he signed "friend," played with her the rest of the day, and gave her a hug at the end of the day. The next day, he brought in his favorite stuffed animal so she could play with it. And as he paid more attention to Chloe, the other children did too.

The inclusion model was new for us. For the past three years, Chloe has been in a special school with other children with autism and other delays. This fall, she will attend a public elementary school, and camp showed us how important it is for her to be with typical children even though she requires a different type of instruction.

ABC News recently featured summer camps for children with disabilities. Sean Nienow, director of the National Camp Association, says, camp "is just part of Americana, and if you've got children with particular special needs it's just very difficult for them to readily fit into a mainstream setting."

Peg Smith, the chief executive officer of the American Camp Association, said 17 percent of all accredited summer camps provide programs for children with special needs. "The world today recognizes that kids need to be kids first, regardless of illnesses or special needs," she said. "It only makes sense that the camp experience, if it's truly designed for young people, is accessible to all kids, regardless of their disabilities."

As much as I appreciate the camp that Chloe was able to attend -- and will probably attend for many more summers -- I can't help but think that the high costs of these specialized programs put them out of reach for so many families. I hope that as more people learn about their benefits, they will attract more support and be able to open opportunities for more children.

Disability Advocates Applaud Sotomayor Confirmation

The Bazelon Center for Mental Health Law called Thursday's Senate's confirmation of Judge Sonia Sotomayor a historic milestone for Hispanics, women, and people with disabilities. "Judge Sotomayor's confirmation promises a brighter future for people with disabilities," said Robert Bernstein, Ph.D., executive director of the Bazelon Center. "For years people with disabilities have looked for a champion on the Supreme Court, someone who understands the importance of disability rights laws to the people they were intended to protect. We think Judge Sotomayor may be that champion."

Jennifer Mathis, deputy legal director at the Bazelon Center, added: "Never before have we had a justice with so much experience interpreting laws like the Americans with Disabilities Act, the Rehabilitation Act, and the Individuals with Disabilities Education Act. Judge Sotomayor's careful, thorough approach to deciding disability rights cases demonstrates her respect for Congress's intent that these laws provide strong protections for people with disabilities."

New Report: Learning Disabilities in the U.S.

Rachel Norton, a member of the San Francisco Board of Education, provides a nice summary of a new report on the state of learning disabilities in the United States. Compiled by the National Council on Learning Disabilities, the comprehensive report reviews both positive and negative trends in meeting the needs of about 2.7 million public school students who have learning disabilities. View the 32-page report.

Some key facts:
- Those 2.7 million students represent 6 percent of public school students nationwide. Two-thirds are males.
- The number of students identified with learning disabilities increased during the 1980s and 1990s, but dropped by 7 percent between 1998 and 2007. Why? Possibly because of stricter standards for identifying learning disabilities and better education strategies.
- The cost of educating a student with learning disabilities is 60 percent higher than the expense for a general education student, compared with 90 percent higher for all students with disabilites.
- Not surprisingly, students who have learning disabilities are far more likely to be held back in school or have disciplinary problems.
- Just one in three students with a learning disability enroll in postsecondary education programs.
- As with all specialized teachers, there just aren't enough qualified teachers or adequate training to meet the needs of children with learning disabilities. The U.S. Department of Education reports that at least 11 percent of special education teachers are not "highly qualified" as defined by IDEA.
- In another study, fewer than half of principals said their general education teachers were prepared to improve the performance of their students with individualized education plans (IEPs).

By the way, the National Council for Learning Disabilities has an excellent website that I had never seen before. Very clean, attractive, and full of resources that are easy to find.

Secretary Duncan Asks Schools for Seclusion/Restraint Policies

Disability Scoop reports that Education Secretary Arne Duncan has sent a letter to all state education heads to formally submit their policies on seclusion and restraint in schools.

From Disability Scoop: "The request follows a government report released in May that documented hundreds of cases of allegedly abusive or deadly uses of restraint and seclusion tactics. It included cases of teachers holding students face down for hours, gagging them, leaving them in dark, closet-like spaces for hours at a time and preventing students from using the bathroom, among other allegations. Nearly all of the allegedly abusive cases involve children with disabilities. Soon after the report was released, Duncan told members of Congress that the report included 'very disturbing, troubling information.' He said he would ensure that all states have policies in place for handling seclusion and restraint in schools before the new school year begins."

U.S. Signs Disability Rights Treaty

As President Obama announced on Friday, today Susan Rice, U.S. ambassador to the United Nations, signed the UN Convention on the Rights of Persons with Disabilities in New York. The president will submit the treaty to the U.S. Senate, which needs to ratify it.

According to the Associated Press, Rice said the treaty "symbolizes that the United States is recommitting itself to upholding human rights through multilateral institutions. It is symbolic of the president's determination to adhere universally to those principles that he has championed and that the United States stands for domestically....

"We all still have a great deal more to do at home and abroad. As President Obama has noted, people with disabilities far too often lack the choice to live in communities of their own choosing; their unemployment rate is much higher than those without disabilities; they are much more likely to live in poverty; health care is out of reach for far too many; and too many children with disabilities are denied a world-class education."

The treaty, already signed by 140 countries, is designed to end discrimination and exclusion of people with physically and mentally disabilities. About 10 percent of the world's population, or 650 million people, live with a disability.

Hypocrisy in Greece over Special Olympics?

Kristina Chew over at autism.change.org recently raised an issue over Greece's role as host of the 2011 Special Olympics World Summer Games. She quotes blogger Emma, whose blog, The Iron Chicken, is about "Life in the weird lane, raising a child with disability in Greece and other things."

Emma writes:
"The irritation stems from the knowledge that Greek politicians are going to being doing their photo opportunities and making their postive statements about inclusion and acceptance and the progress that Greece has made etc, etc, etc, when in fact they are doing pretty much.....nothing towards inclusion and acceptance or anything else regarding disability."

Read Emma's post.

Vist the official site of the 2011 Games.