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.

Mixed Reactions to ADA Anniversary Events

Dora Raymaker of autism.change.org points out that reaction to President Obama's ceremony marking the 19th anniversary of the Americans with Disabilities Act was not entirely positive.

As an example, read the reaction from New Mobility, titled "Obama's ADA Speech Bombs." Managing editor Josie Byzek worries that President Obama "believes most of the hard work is already done (if it was ever that important to begin with), and mainly all we need now is better medical treatment, either through stem cell research or health care. Obama’s greatest praise is for the appeasers who never complain, and he gave just a passing pat on the back for the advocates who brought the ADA into being. Job done, he seems to say. No need for that type of unpleasantness any more."

Raymaker herself wrote a thoughtful analysis about her mixed feelings about the ADA, asking readers whether the ADA should get a birthday card, a get well card, or both.

To provide a balanced report, here is the statement of U.S. Labor Secretary Hilda Solis on the ADA anniversary.

I think the real question is not what people think about the president's comments on the ADA's 19th anniversary, six months after taking office. The real test for President Obama will be when we mark the 20th anniversary and reflect on what progress this administration has made in disability policy.

ADA 19th Anniversary: Remarks, Proclamation

Today is the 19th anniversary of the Americans with Disabilities Act.

As reported earlier (see post below), President Obama on Friday announced his intention to sign the UN Convention on the Rights of Persons with Disabilities. As part of a ceremony marking the ADA anniversary, the president also signed a proclamation (read full text) and commented on the work that remains to be done in the area of disability rights.

The proclamation notes: "People with disabilities far too often lack the choice to live in communities of their choosing; their unemployment rate is much higher than those without disabilities; they are much likelier to live in poverty; health care is out of reach for too many; and too many children with disabilities are denied a world-class education."

And in his remarks, the president said, "I am not satisfied -- I am proud of the progress we have made, but I am not satisfied -- and I know you are not either -- until every American with a disability can learn in their local public school in the manner that's best for them. Until they can apply for a job without discrimination and live and work independently in their communities, if that is what they choose, we have got more work to do."

Watch CSPAN's video of Friday's event.

The ADA at 19: A Time to Celebrate (and Advocate Harder Than Ever)

Sunday is the 19th anniversary of the Americans with Disabilities Act. It's nearly indisputable that people with disabilities have more rights and more access than they did before the ADA, and that's reason to celebrate. But if you're reading my blog, you probably also know that our country has a long way to go before people with disabilities are truly equal citizens. Today, we face questions like: How will people with disabilities fare in health care reform? How can we make progress in education, housing, employment, and other areas when budget cuts are devastating services for people with disabilities nationwide?

This milestone will elicit many ceremonies and speeches, including one from our president, but it will take more than words and compassion to eliminate discrimination, remove barriers, solve problems, and ensure equal rights and opportunities for all Americans. As I review remarks about this anniversary, I'll be looking for ideas, plans, and dollars -- not just progress reports.

In the meantime, I want to share several important resources that may help you learn more -- and teach others -- about the ADA and its importance. I encourage you to add your own comments on 1) the significance of the ADA, 2) steps we still need to take, or 3) other resources you'd like to share.

LINKS
- Full text of the Americans with Disabilities Act of 1990 (as amended in 2008)
- About the ADA
- History
- How the ADA Defines "Disabilities"
- ADA Training (podcasts, toolkits, conferences, and more)
- Resources (employment, youths with disabilities, and more)
- Information on Accessible Technology

Thanks to the Disability and Business Technical Assistance Center (DBTAC) National Network of ADA Centers for these resources. Learn about DBTAC and find even more on its website.

QUOTES OVER THE YEARS
"With nearly 54 million Americans living with disabilities, it must be a priority for our government to do everything it can to protect and respect the needs of these Americans. I am proud the Senate passed this Act today to reverse judicial decisions that permit discrimination against persons with disabilities. Eighteen years ago, enacting the Americans with Disabilities Act was a historic milestone for millions of Americans when it was signed into law. It gave Americans with disabilities better access, more opportunities, and increased independence."
- Senator Barack Obama, on the Senate's passage of the ADA Amendments Act of 2008, Sept. 11, 2008

"The ADA is one of the most successful civil rights laws in our history and has been an essential part of countless American lives."
- President George W. Bush, proclamation on the 18th anniversary of the ADA, July 26, 2008

"In 1992, I issued a challenge to our nation. I said we must not rest until America has a national disability policy based on three simple creeds; inclusion, not exclusion; independence, not dependence; and empowerment, not paternalism. I remain committed to that vision and I want to thank all of you for working so hard with us to make it a reality. More than ever before in our history, America's greatness in the next century will depend upon the ability of our citizens to make the most of their own lives. Americans with disabilities are an enormous, largely untapped reservoir of that potential."
- President Bill Clinton, May 23, 1996

"This Act is powerful in its simplicity. It will ensure that people with disabilities are given the basic guarantees for which they have worked so long and so hard. Independence, freedom of choice, control of their own lives, the opportunity to blend fully and equally into the rich mosaic of the American mainstream."
- President George H.W. Bush, ADA signing ceremony, July 26, 1990

"Injustice anywhere is a threat to justice everywhere."
-- Martin Luther King Jr.

President to Sign International Disability Treaty

Earning its name, Disability Scoop reports two days early that on Friday, President Obama will announce he will sign the UN Convention on the Rights of Persons with Disabilities. It's no coincidence that Friday is also the 19th anniversary of the Americans with Disabilities Act.

To date, 140 countries have already signed the treaty, which seeks to remove barriers for approximately 650 million people with disabilities around the world.

White House spokesman Shin Inouye told Disability Scoop, "On Friday, the president will announce this administration’s decision to join all the other nations who have signed this convention, thereby affirming internationally the commitment enshrined in our own national law and our long-standing leadership in protecting the rights of people with disabilities."

Read more at the United Nations' Enable website, a great resource for disability rights around the world.

UPDATE: United States International Council on Disabilities (USICD) applauds the president's decision, calling the treaty "good for America, good for people with disabilities, and good for the world."

An Easy Way to Make a Big Difference for People with Autism

I serve as a state advocacy coordinator for Autism Speaks, but as a parent, I have a personal appeal for you. Health reform is moving along without a critical component -- assurance that insurance companies will be required to cover autism services. You can help by making two phone calls, sending two emails, and telling your friends about this.

Most urgent, call House Speaker Nancy Pelosi at 202-225-0100.

Also important, call Senate Majority Leader Harry Reid at 202-224-3542.

If you aren't sure what to say, you can use these messages:
"Hi, My name is _______________. I am calling from (your city, your state). I want you to know that health care reform that does not stop autism insurance discrimination is unacceptable. People with autism deserve coverage for the treatments and therapies that will help their medical condition. Thank you."

You can also email Speaker Pelosi and Majority Leader Reid.

Read more about these issues and how you can get involved.

An Open Letter -- and Homework -- for Secretary Duncan

Dear Secretary Duncan:

I like to report on positive steps the administration is taking to improve the lives of people with disabilities. And I'd REALLY like to find some good news -- even supportive statements -- coming from you and the Department of Education. I promise you, if you say something positive, I'll report it here and many people will read about it.

But PLEASE. Give me something to work with.

As an example, you met yesterday with the American Federation of Teachers, the second largest teachers union, with 1.4 million members. In your address and in the Q&A, you never mentioned special education and how it might fit in with your proposed education reforms.

You had a chance when a teacher from Illinois asked you about standards for paraprofessionals. You could have said, "Great question. As you know, we have more than 250,000 paraprofessionals in our schools who play an important role supporting teachers -- and who are critical to our ability to meet the needs of children in special education programs. We have to make sure that we have high standards for them just as we do for teachers."

That's what you could have said. Instead, your answer was: "Great question. One I haven't done a lot of work on."

Secretary Duncan, with all respect, it's time for you to do some work on special education. As a start, please read this fact sheet on paraprofessionals from your own Office of Special Education Programs (OSEP). But please, don't stop there. As you work to fulfill your responsibility to provide education for all Americans, including those who have disabilities, visit the OSEP website to learn about its programs and responsibilities. While you're there, you may notice that under "what's new," there are only two new entries since President Obama took office six months ago. I hope to see more developments and hear your plans soon.

Longtime Advocate for Blind Dies at 61

After Harold Snider was forced out of his third-grade classes because he was blind, his parents sued Duval County in Florida, and Harold became the first blind child in the county to graduate from public school. He went on to become a leading advocate for people with disabilites. Snider died June 26 at his home in Rockville, Md., after a heart attack.

In the 1970s, he became the first blind employee of the Smithsonian Institution, where he coordinated programs for people with disabilities for the National Air and Space Museum. "You can't look at the spacecraft, so you touch it, or you hold a model of it or a raised line picture of it," he explained. "You can't see an airplane, so you hear its engine roar."

Snider worked on disability issues for the Republican National Committee, and in 1990President George H.W. Bush appointed him as deputy executive director of the National Council on Disability. He helped draft the Americans With Disabilities Act of 1990. He also worked with the National Federation of the Blind to develop NFB-Newsline, an audible newspaper and magazine service that allows people to hear the Washington Post, the New York Times, the Los Angeles Times, the Wall Street Journal, and other newspapers at no cost.

According to an obituary in the Washington Post, Snider "said he was sometimes asked how blind people performed tasks such as crossing the street, cutting a sandwich or, as the more curious would ponder, having sex. 'I tell them I do it like everybody else. In the dark.'"

Waitlist-Gate Likely a Non-Issue for White House Disability Chief

The White House's top disability advocate was back in the news yesterday -- but for the wrong reasons. The Chicago Tribune reported that Kareem Dale, special assistant to the president for disability policy, used his White House email account to recommend a student for admission to the University of Illinois law school, his alma mater. The school's dean testified that the school no longer uses "clout lists" and that Dale's email from April was ignored.

Is this a big deal or a small deal? I say pretty minor, and unlikely to affect Dale's ability to be an effective advocate for people with disabilities. In his email, he stressed that he was writing in a personal capacity -- so while he used poor judgment, there's no evidence he was intentionally implying his endorsement reflected the views of the President or anyone else at the White House.

When I worked at the White House during the first years of the Clinton Administration, several junior staff were reprimanded for receiving -- not sending -- faxes with NCAA brackets during March Madness. It was considered a form of gambling and an ethical violation to give someone the fax number and ask to receive the document. Sending a completed bracket, I'm sure, would have been considered worse.

More relevant, there was a strong policy against using your White House badge to gain any sort of favor. If a local bar or restaurant advertised "half price drinks/food for White House staff," it would be an ethical violation to accept. In fact, you were encouraged to put your badge in your pocket while you were outside the building. So when you work there, you have to recognize that you are always representing the White House and the President -- and increasingly, you are under a microscope from people who want to catch you doing something wrong.

My guess? From now on, Kareem Dale's media exposure will be related to his dual roles as an advocate for disabilities and the arts. And you've heard the end of waitlist-gate.

White House Appoints Assistant Secretary for Special Education and Rehabilitative Services

President Obama has appointed Alexa Posny as his Assistant Secretary for Special Education and Rehabilitative Services in the U.S. Department of Education. As you can see from her bio, she has a lot of relevant experience, including being a teacher herself.

"Alexa E. Posny currently serves as the Commissioner of Education for the state of Kansas. As Commissioner, she is responsible for helping over 450,000 students meet or exceed high academic standards, licensing over 45,000 teachers, and overseeing a state education budget of a little over $4.5 billion. Prior to this, Posny was appointed as the Director of the Office of Special Education Programs (OSEP) for the U.S. Department of Education, a position in which she assisted state and local efforts to effectively educate all children and youth with disabilities. Other positions that Posny has held included the Kansas Deputy Commissioner of Education, Kansas State Director of Special Education, Director of Special Education for the Shawnee Mission School District, Director of the Curriculum and Instruction Specialty Option as part of the Title 1 Technical Assistance Center (TAC) network of TACs across the United States, and a Senior Research Associate at Research and Training Associates in Overland Park, Kansas. Posny earned her bachelor's degree from the University of Wisconsin at Stevens Point, a master's degree in behavioral disabilities and a doctorate in educational administration both from the University of Wisconsin Madison. Currently, she serves on the Board of Directors for the Chief State School Officers, the National Council for Learning Disabilities, and chairs the National Assessment Governing Board's Special Education Task Force. Most importantly, she has been a teacher at the elementary, middle and high school levels and remains a teacher today, serving as adjunct faculty with the University of Kansas."

Posny's nomination requires Senate confirmation. Read July 6 press release, including other appointments.

UPDATE: Kathy Martinez has been confirmed as the Assistant Secretary for Disability Employment Policy at the Department of Labor. Read bio from the Washington Post.

Disability Groups Support Sotomayor Nomination to Supreme Court

Back on May 27, I posted a review of Judge Sonia Sotomayor's record on disability issues. Yesterday Disability Scoop reported that numerous disability organizations are publicly expressing their support for Judge Sotomayor's nomination to the Supreme Court. The groups -- which include the American Association of People with Disabilities, the Autism Society of America, the National Council on Independent Living, the National Disability Rights Network, the Bazelon Center for Mental Health Law, and the National Down Syndrome Society -- wrote a letter to the Senate Judiciary Committee saying Judge Sotomayor's record reflects "a good understanding of -– and healthy respect for -– the rights of persons with disabilities."

UPDATE (July 9) -- Read the letter from these groups. And here's a letter from disability law professors who support Judge Sotomayor.

Autism Speaks Makes Push for Insurance Coverage: You Can Help

Autism Speaks is urging parents and advocates to call Speaker of the House Nancy Pelosi and Senate Majority Leader Harry Red to "stop autism discrimination" by insurance companies.



According to Autism Speaks, "Autism insurance reform can and should be included in the final health care reform bill that President Obama has stated he will sign by the end of October. This is the time to end autism insurance discrimination once and for all. Our children have a medical condition which deserves appropriate treatment, therapy, and care. Congress needs to know that health care 'reform' that fails to stop autism insurance discrimination is unacceptable."

Here are three ways you can help:

1. Call Speaker Pelosi and Majority Leader Reid. Here are their phone numbers and a simple message that you can read or modify:

Speaker Pelosi: (202) 225-0100
Majority Leader Reid: (202) 224-3542

"Hi, My name is _______________. I am calling from (Your city, your state). I want you to know that health care reform that does not stop autism insurance discrimination is unacceptable. People with autism deserve coverage for the treatments and therapies that will help their medical condition. Thank you."

2. Send a message online. Add personal information about why this is an important issue for you and your family. Be sure to let them know that all children with autism from coast to coast deserve appropriate insurance coverage.

3. Forward this information to people by email, Facebook, Twitter, and listservs. Autism Speaks suggests forwarding it to at least 20 people who do NOT have a child with autism -- neighbors, extended family, coworkers, etc. -- and ask them to make these two calls for your child.

To stay updated on this initiative and more, register at autismvotes.org. If you want to make a difference for all children with autism (and their families), this is the most important thing you can do this week.

Patriotism & Special Ed

In this holiday blog post, special ed attorney Jennifer Laviano explains why special education law and patriotism go hand in hand.

"In few areas of the law is there a better demonstration of the ideals of the Founding Fathers than in the Individuals with Disabilities Education Act," she writes. "Something about the way the IDEA envisions a just and equitable educational system as it regards kids with special education needs speaks to me as an American. It really is about all of the things that I love about the founding principles of the USA: justice, fairness, individual rights, recognizing that with power comes responsibility. Protecting the most vulnerable among us."

Follow Jennifer on Twitter at http://twitter.com/JenLaviano. (You won't be disappointed). Her blog is http://www.connecticutspecialeducationlawyer.com.

I hope you had a good Fourth of July. My family helped raise money for autism research and care by running/walking today in the Autism Speaks Potomac 5K, followed by a pool party for our 30+ team members and their families. Mark your calendars for the Walk Now for Autism on the National Mall on Halloween morning -- Saturday, Oct. 31, 2009.

Voting Up Among People With Disabilities

Disability Scoop's Michelle Diament, who you can always count on for the most important news about disabilities, reports that "People With Disabilities Voting In Record Numbers." According to a new study, more people with disabilities voted in the 2008 presidential election than ever before. The 14.7 million voters in 2008 represent a 34 percent increase over 2000.

In 2008, 64 percent of people without disabilities voted, just a bit above the 57 percent of people with disabilities. When you look at people with disabilities as a minority group, the 14.7 million voters compares favorably with African Americans (15.9 million voters) and Hispanics (9.7 million voters.)

If you have any doubt that people with disabilities are a political power, consider this: In an election that gave us our first African American president, almost as many people with disabilities voted as African Americans.

Michael Jackson: Lessons for Disability Advocates, but Which Lessons?

I typically don't comment on pop culture on this blog -- I'll never compete with Perez Hilton, TMZ.com, or People magazine, and I don't want to. But the day after Michael Jackson's death, I came across an article on Twitter with an intriguing title: "What Can We as Advocates of those with Disabilities Learn from the Story of Michael Jackson?" The article was from PediaStaff, a company that recruits and places pediatric therapists, so I was interested in their perspective.

The article, by marketing VP Heidi Kay, suggests that what we can learn from Michael Jackson is that we should have treated him better while he was with us. That instead of criticizing him as a "social misfit," we should have tried to understand him better -- just as we should try to understand and accept children with physical, neurological, emotional, and behavioral challenges. Heidi goes so far as to say, "The story lines of the lives of Michael Jackson, Susan Boyle, and others might have played out differently if the collective 'we' had shown more compassion for them in their hour of need."

That's where I disagree. Yes, some people mocked Michael Jackson for his eccentricities, but the main criticism was reserved for his interactions with children, which were some combination of 1) unusual (no doubt), 2) inappropriate (little doubt), or 3) illegal (not proven). In his own words, from an extensive interview aired as "Living with Michael Jackson":

Martin Bashir: "But is it really appropriate for a 44-year-old man to share a bedroom with a child that is not related to him at all?"

Michael Jackson: "That's a beautiful thing."

Bashir: "Did you ever sleep in the bed with them?"

Jackson: "I have slept in a bed with many children. I slept in a bed with all of them when Macauley Culkin was little: Kieran Culkin would sleep on this side, Macauley Culkin was on this side, his sisters in there...we all would just jam in the bed, you know....Because what's wrong with sharing a love? You don't sleep with your kids? Or some other kid who needs love who didn't have a good childhood?...Why can't you share your bed? The most loving thing to do, is to share your bed with someone."

Like many other people, Heidi defends Jackson by saying he was robbed of his own childhood and that he was cleared of all charges. To some extent, I agree. By many accounts, Michael Jackson was like a child psychologically up until his death at age 50. And apparently he had a special ability to connect with children because he never let go of his childhood. That's not a bad thing. But when you're 30, 40 years old, you're an adult, and sleeping in bed with other people's children is wrong.

And that's the real lesson for advocates of children with disabilities -- because those children are up to 10 times more likely to be sexually abused than their non-disabled peers. So I will respectfully mourn Michael Jackson's death, feel sympathy for his family and friends, and honor his musical legacy -- but I will not endorse his troubling behavior with children just because he has died. What are your thoughts?

Are Disability Priorities Taking a Backseat to the Arts?

If you read this blog for updates on disability issues, you may not care about this article about the Foundation for Arts and in Embassies, from Foreign Policy Journal. So why am I even mentioning it? Because I found it through my Google Alert for "Kareem Dale," Special Assistant to the President for Disability Policy. But most of the time, my Google results relate to Dale's other role -- that of Special Assistant to the President for the Arts and Culture.

In February, I celebrated Dale's appointment as the highest ranking disability adviser in White House history. In March, I linked to this interview with Dale on a range of disability issues.

But also in March, I reported that the president had added a pretty big task to Dale's plate -- overseeing arts and culture. In that post, I wrote, "The question about Dale's most recent role is whether it will distract him from his duties in disability policy or enhance those duties. For example, what is the role of arts and culture for people with disabilities? What effect can art and music therapy play in education for people with special needs?...Is the White House asking Dale to take on too much, or will the two roles complement each other?"

In response to those questions, reader William Pearce commented: "Dale cannot do both jobs well. This is typical for administrations that do not care about disability issues. I see this dual job role all the time in academics and disability issues are never a priority. This is a bitter disappointment."

I'm not saying Dale is not doing a good job as an advocate for people with disabilities. But his public profile -- shaped by his appearances, interviews, and media coverage -- is dominated by the arts, not disability policy. So much so that an opinion piece in the Milwaukee Journal-Sentinel, Johanna Mattern Allen misinterpreted his second appointment as replacing his first. Recommending that the president appoint a cabinet-level position on disability, Allen wrote, "There currently isn't even a policy adviser for disability since Kareem Dale moved to an arts leadership position."

The arts are important to our culture and values, and having a special assistant in that area makes sense. But especially with health reform high on the administration's agenda, it's a slight to the 50 million Americans with disabilities to make their top government advocate split his time with another issue.

Are Chicago Public Schools "Systematically" Denying Special Ed?

Kudos to Christina Samuels over at Education Week's special education blog for picking up on this story from Chicago. Christina and I have been examining Education Secretary Arne Duncan's past experience with special education -- to see what the future might hold -- and a recent article in the Chi-Town Daily News reports that some students with disabilities are being denied access to specialized help, and others are being barred from evaluations for special ed because it's too expensive to educate them. According to the Chi-Town article:

"Mary Ann Pollett, principal of Moses Montefiore Special Elementary School, testified before the City Council's Committee on Education and Child Development that officials have discouraged teachers at her school from reporting students' disabilities because it is too expensive to deal with them.

" 'They deny that that goes on, but it does,' Pollett said, with her superiors only a few yards away. 'Montefiore is only the tip of the iceberg. This goes deep into a systemic issue that needs to be addressed within the Chicago Public Schools.' "

Also at the meeting, the president of the Chicago Teachers Union released a survey showing that more than 70 percent of teachers and case managers believed students in their schools with emotional or behavioral problems were not receiving special education.

Is this Arne Duncan's special-ed legacy as head of Chicago schools? If so, what does that say for today's students across the country who need special services?

Happy Father's Day

If you're a father, have a father, or are married to a father, this article by Sharisa Lewis in the Examiner in Dallas is for you: "Dads of Special Needs Kids Deserve Extra Honor, Praise."

I'm not sure I agree with Sharisa's headline. As one of the fathers she's writing about, I think fathers with children with special needs (like all parents) do everything we do because we love our children and want what's best for them.

Sharisa makes a good point about President Obama's recent speech challenging fathers to be more involved with their children. He said, "We need to step out of our own heads and tune in. We need to turn off the television and start talking with our kids, and listening to them, and understanding what's going on in their lives."

But Sharisa accurately points out, "Fathers of kids with special needs have an extra challenge to reconnect each day with that child. Sometimes it comes easily, some days it doesn't seem worth the effort. Applause to all the fathers who keep on loving and building up the child with special needs, even through the disappointing days."

(That's me and my daughter in the photo above. It's a few years old, but I've always liked it.)

Happy Father's Day.

Is Obesity a Disability?

At the annual meeting of the American Medical Association, doctors discussed whether obesity is a disability that should be covered by the Americans with Disabilities Act. They said no.

According to ABC News, the doctors' rationale was that labelling obesity as a disability could restrict communication with their patients. They fear they could be reprimanded if they offended a patient by telling the truth: "You're overweight, you're at risk, and you need to lose weight."

The AMA's resolution states: "We do not want to have this limit the ability to have doctors talk about a very serious condition. If obesity is designated as a disability, physicians could be sued or reprimanded for discrimination under the Americans with Disability Act if a patient takes offense at the physician discussing obesity. Therefore be it resolved that our American Medical Association not support the effort to make obesity a disability."

Making This Blog More Accessible

Today I received a nice note from "Accessibility Evangelist" Darrell Shandrow, who runs the Blind Access journal and podcast. Darrell asked me to consider using comment moderation instead of word verification to prevent spammers from posting inappropriate comments. "Though an audio alternative is provided," he explained, "it is difficult to use and still locks out the deaf-blind."

Because I agree with Darrell that resources like my blog should be fully accessible to all people with disabilities, I have enabled comment moderation. I promise to quickly review all comments, and I will post everything except spam, inappropriate language, and personal attacks.

Thanks for making this blog more accessible, Darrell.

Teacher Whose Class Voted Out Kid with Autism is Reinstated

Here's a story for you.

May 2008: 5-year-old boy with autism has behavior problems. Teacher asks students to vote on whether he should stay -- they vote him out. Teacher is suspended one year without pay, and tenure is revoked.

June 10, 2009: Teacher wins appeal. Will return in November with tensure reinstated.

Here's a TV Report, via Disability Scoop.

Palin Reappears as Special Needs Advocate

After her unsuccessful bid for vice president, I wondered aloud if Gov. Sarah Palin would honor her pledge to be an advocate for people with disabilities. During the campaign, she said if she were elected, people with disabilities would have an advocate in the White House. I pointed out that she didn't have to be vice president to be an advocate.

On Sunday, Gov. Palin participated in a fundraiser in Long Island, N.Y., for Independent Group Home Living, a nonprofit for children and adults with developmental disabilities. She also spoke at a walk for Autism Speaks. With her were her husband, Todd; their 14-year-old daughter Willow; Palin's sister Heather Bruce, and Bruce's 14-year-old son Karcher, who has autism.

I give her credit for publicly showing her support and for taking the time to make public appearances that raised money for two great causes. But as I expressed during the campaign, why did Palin continually say that giving birth to her son Trig (who has Down Syndrome) was the first time she became aware of disabilities? At that point, her own sister had had a son with autism for more than a decade, yet disability advocates in Alaska universally said her policies as governor showed no understanding or special interest in disabilities.

Imagine you're Palin's sister Heather, in a crowd of 1,000 people, and you hear your sister say:
"Having a son being born with Down Syndrome is a whole new chapter of our lives....It's taken a while for us to get to this point where we can say, 'Thank you, God for allowing us to recognize the special needs community.' Without Trig this would be absent from us."

"Absent from us"? Isn't having a nephew with autism reason enough to champion the cause, especially if you're the governor of your state?