Monday, February 25, 2008

NYU Ransom Notes Online Town Hall

The NYU Child Study Center will be hosting an online forum Tuesday, Feb. 26 for discussion of future advertising campaigns to replace the offensive Ransom Notes ads. ASAN is asking autistic self-advocates to take the time to attend the forum and express the concerns of our community. Ari Ne'eman wrote a letter explaining the issues to be raised at the forum:


Hello all,

This past December, we scored a great victory for the disability rights movement. By working together, we succeeded in forcing the full withdrawal of the offensive and dehumanizing Ransom Notes advertisements put out by the NYU Child Study Center. As you may recall, at the time of the ads withdrawal, NYU promised to hold a town hall meeting sometime in the future to address the concerns the disability community expressed. A lot has happened since then and our work has continued on a wide variety of fronts, from working to improve the education system for students on the autism spectrum to advocating for self-advocate representation in all parts of the policy process, amongst many other things. However, the time has come for us to return to the issues that sparked the massive response to the Ransom Notes ad campaign. On Tuesday, February 26th from 11 AM to 1 PM EST, the NYU Child Study Center will be hosting an online town hall to discuss "children's mental health" in response to the public outcry that shut down the Ransom Notes ads. While the medium is hardly perfect, the input collected during this will serve as the basis for future ad campaigns. As such, it is important that when this town hall occurs tomorrow, the disability community's advocates are well represented.

In light of that, the Autistic Self Advocacy Network is asking all of you to come to the online town hall and speak out against offensive depictions of people with all types of disabilities. The information to join the town hall will be found on the NYU Child Study Center's website at http://www.aboutourkids.org/. Please post this information to any and all forums, listservs, blogs or other locations whose readers might find it of interest. In addition, we've provided some major points to touch upon in the context of your advocacy tomorrow:

1. Nothing About Us, Without Us: Although self-advocates were the leading voices against the Ransom Notes ad campaign, the NYU Child Study Center has consistently referred to parents as being the primary group concerned about the offensive nature of the ads. Well this appears to be a relatively minor point, it illustrates a larger failure to recognize and respect adults with disabilities. When the Ransom Notes ads were being created, they were shown to a focus group of parents of children with disabilities. When the new ads are put together, they must be screened by focus groups of people with disabilities ourselves, in addition to any other stakeholders that are included in the process. People with disabilities must be included at every step of the process. Make sure that is an important part of the message you send to NYU tomorrow.

2. Advertise Hope, Not Fear: Too often, depictions of disability in the media rely on fear and negative stereotypes, thus increasing stigma and hurting our efforts for rights, inclusion and respect. The Ransom Notes ads were particularly egregious examples of this trend. Tell NYU that its future ad campaign should be based on what people with disabilities can achieve with the right kinds of education, services and supports and how individuals and families can access those options. Two excellent examples can be found in the National Autistic Society's Think Differently About Autism Campaign and the Gillette Children's Specialty Healthcare Cure Pity Campaign. Referencing these examples of positive advertising about disability issues can serve as a helpful tool as we work to communicate our vision of a supportive awareness campaign about disability.

3. Ensure Accurate Information: The Ransom Notes ads used phrases like "detriment to himself and those around him", "destroying his ability for social interaction and driving him into a life of complete isolation", and "no longer be able to care for himself or interact socially as long as he lives" to distort information about the legitimate and significant challenges associated with the disabilities being portrayed. These statements were attacked as not only highly offensive, but medically inaccurate. We need a world that accommodates and includes us, not one that fears and pities us on the basis of bad information. The next ad campaign should acknowledge and accurately describe the challenges we face, but do so in such a way as to encourage the general public to be understanding and supportive of those difficulties.

4. Acknowledge Ability and Personhood: The Ransom Notes ads depicted children with disabilities as "kidnap victims" who were not wholly present within their own bodies. The new ads must not only acknowledge and respect the fact that both youth and adults with disabilities are whole individuals, deserving of rights and respect, but should also focus on depicting individuals with disabilities as people with both strengths and challenges. Some argue that the areas where we have strengths do not need calling attention to, as we are not seeking the same level of support for those things. While it is the case that the challenges associated with disability require more funding and attention, what we can do also should be highlighted. The reason for this is that, for many people, the stigma associated with the diagnostic label they hold can be just as much or more of a problem for them as the lack of specific services to mitigate the disabilities they face. The need to debunk mistaken preconceptions, such as the belief that a person with a disability cannot hold a job or be a responsible parent, is at least as pressing as the need to ensure more services and supports.

5. Bring Adults Into the Conversation: Children with disabilities become adults with disabilities - and that is by no means a problem. What is a problem is the lack of awareness and support for adults with disabilities. There is a perception, reinforced by the media and advertising that portrays certain disabilities as solely the province of children, that some kinds of disabilities only relate to children. This is particularly true in the case of the autism spectrum and with learning disabilities, both of which were portrayed by the Ransom Notes advertisements. The problem is so extensive that a recent author of a bestselling book about autism announced that autistic adults did not exist! A media campaign that will truly draw attention to the varied and pressing needs of the disability community will highlight the issues of both youth and adults.

Thank you for your support and we look forward to having you join us in making sure that our concerns are heard tomorrow. Let's make sure NYU hears our voices. As always, Nothing About Us, Without Us!

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org/
732.763.5530

Saturday, February 23, 2008

Congressional Briefing on Independent Living

ASAN supports the ongoing efforts to restore the protections against employment discrimination originally intended by Congress in the Americans with Disabilities Act. We are providing this information about Tuesday's policy briefing as a courtesy to the National Council on Independent Living and for the benefit of any readers who may be interested in learning more about this issue. If you have any questions about the policy briefing or about the National Council on Independent Living, please direct them to:

John A. Lancaster, Executive Director
National Council on Independent Living
Ph 202-207-0334 (V/TDD)
john (at) ncil.org


National Council on Independent Living's
2nd Annual Congressional Policy Briefing



Washington, D.C. (February 21, 2008) -- The National Council on Independent Living Board of Directors announced its 2nd Annual Congressional Policy Briefing to outline for Members of Congress NCIL's priorities and those of the broader Independent Living and Disability Rights Movement.

"Now, more than ever, is the time to focus Congress' attention on the needs of America's poorest and most disenfranchised minority - people with disabilities," said NCIL President Kelly Buckland. "Our policy priorities focus on key legislation needed to empower people with disabilities to live independently and participate fully in all aspects of society," Buckland added.

The briefing is scheduled for Tuesday, February 26, 2008 from 9:00 AM – 11:00 AM in the historic Russell Caucus Room, SR-325 in the Russell Senate Office Building at Constitution Avenue & 1st Street NE, Washington, DC 20510.

NCIL's top priority is increased federal funding for the Independent Living Program. IL funding has been cut three consecutive years, while our member Centers for Independent Living (CILs) and their State Councils labored with dwindling resources throughout the country to provide essential services to people with disabilities, enabling them to live independently and productively in their own homes and communities. Indeed, last year, CILs prevented 28,000 people from entering nursing homes, helped nearly 2,800 people out of nursing homes into community-based settings, and served another 300,000 people with disabilities with essential supports. "In 2007, we saved the country more in Medicaid funding than the entire Federal Budget contribution to our IL programs. We could do so much more, serve so many more, and save our nation so much more with appropriate investment in the IL Program," Buckland emphasized.

NCIL is also focusing on passage of the ADA Restoration Act. In recent years, a number of U.S. Supreme Court decisions have significantly reduced the protections available to people with disabilities in employment settings. With passage of the ADA, Congress clearly intended to prevent discrimination based on disability, and hundreds of Members of the U.S. House of Representatives support this corrective legislation to restore their original intent. House Majority Leader Steny Hoyer (D-MD) and Former Chair of the House Judiciary Committee, Congressman Jim Sensenbrenner (R-WI), introduced this legislation in the U.S. House of Representatives and Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) are moving this legislation forward in the U.S. Senate. NCIL and the broader disability community and pushing for passage of this legislation before the 110th Congress adjourns. Restoring Congress' original intent to the ADA would ensure that people with disabilities are getting the opportunity to present their cases fairly when they have experienced discrimination.

NCIL continues to focus on passage of the Community Choice Act. Senate Finance Committee Chair Max Baucus has asked the Congressional Budget Office (CBO) to indicate the funding necessary to implement this legislation. Regrettably, the federal government continues to fund services in institutional settings, but refuses to mandate these same services in home and community-based settings. This institutional bias forces many people with disabilities to reside in an institution in order to receive supports they need to survive.

NCIL recently adopted a position paper entitled "Being American: the Way Out of Poverty" as an alternative to the current Social Security programs, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), which freeze many Americans with disabilities in poverty by forcing them to choose the disability rolls for fear of losing healthcare and a meager monthly check. "Our approach would enable people with disabilities to choose employment by providing necessary supports. It would also provide hiring incentives for skeptical employers. Doesn't it make more sense to invest in human productivity than human poverty," queried John Lancaster, NCIL's Executive Director.

"The core IL philosophy, to which NCIL and our members subscribe, is support for consumer-directed, community-based services," said NCIL Vice-President Dan Kessler of Alabama. "Equal opportunity, a base line of essential community-based services, and economic empowerment will give choices to all people with disabilities which allow them to be active contributors to the prosperity of their communities."

The National Council on Independent Living (NCIL) is America's oldest cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents over 700 members, including individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

The four core services provided by all federally funded Centers for Independent Living are peer-to-peer support, information and referral, independent living skills training, and systems and individual advocacy. With additional funding, CILs can serve more disenfranchised people with disabilities, enabling them to get the services they need to be empowered contributors to their communities, employers and families.

Monday, February 11, 2008

Ohio Committee Seeks Comments

The Futures Committee of the Ohio Department of Mental Retardation and Developmental Disabilities (ODMRDD) will be holding a public hearing in Columbus this Thursday, February 14, to discuss the services provided for the agency's clients and to develop a long-term plan.

http://odmrdd.state.oh.us/futures/odmrdd.htm

ASAN Southwest Ohio encourages autistic self-advocates in Ohio to attend the hearing or to submit comments by e-mail.


2008 Public Hearing Scheduled -

The Public Hearing is scheduled for February 14 from 9:00 am - 12:00 pm at the Riffe Center, 77 S. High St. The Futures Committee will meet from 1:00 pm - 3:00 pm after the testimony.
Futures SubCommittee Recommendations are in and there are 33 Suggestions for System Improvements.

The Subcommittees have made a set of recommendations that address the legislative mandate and offer strategic opportunities to improve the services, access and quality for individuals and families. They also set the strategy for addressing issues of financial sustainability and system improvements for the future.

The Futures Committee is interested in testimony related to the Recommendations submitted to by the Subcommittees and in the how well those recommendations meet the Legislative Mandate of the Committee.

The Subcommittee members worked very hard to organize a great deal of input into defined and measurable recommendations. The full committee will next move forward in assessing the key issues and priorities to be acted upon as the foundation for ODMRDD’s direction over the next three years.

Public testimony will be limited to 3-5 minutes, but written comments of any length can be submitted in person or through the MRDD Futures Website via an email. We encourage everyone who wishes to testify to notify the Department via e-mail so that we can accommodate as many as possible during the scheduled time. People who pre-register will have priority to testify before those who do not.

Written testimony can also be mailed: ODMRDD, ATTN: Lisa Walsh, 1810 Sullivant Ave., Columbus, OH 43223-1239.

Remember – the accessible entrance to the Riffe Center is on the State St. side of the building.


The Committee is chaired by ODMRDD Director John Martin. The Committee’s 22 members represent a variety of organizations interested in Ohio’s MRDD system, and includes an individual with MRDD, a family member, and others in the MRDD arena. Through the Committee, the ODMRDD will develop an overall long-range strategic plan for continuous improvement of the MRDD system. The Committee will focus on finding practical solutions in four specific areas:

1) accessing services and supports;

2) financing MRDD services and supports;

3) delivering quality services; and,

4) serving populations with specialized needs.

The Committee’s recommendations will address how to achieve improvements in the systems serving individuals with MRDD and their families, while balancing available resources in relation to the needs of individuals, families, and communities.

Outcome

By March 30, 2008, the MRDD Futures Committee will produce a written report for Governor Strickland and the General Assembly. The report will include the results of the study, stakeholder involvement, and the Committee’s recommendations. Following submission of the report, the MRDD Futures Committee will cease to exist.