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."