AAPDnews WINTER 2006 THE INFORMATION NEWSLETTER FOR AAPD MEMBERS Budget Battle Looms In his January 31st State of the Union address, President Bush outlined his priorities for the coming year. He stated, “Keeping America competitive requires affordable health care. Our government has a responsibility to help provide health care for the poor and the elderly, and we are meeting that responsibility.” Although e did not directly mention the disability community, many disabled people fall into “the poor” or “the elderly” category. While it is not always certain how well the government is meeting that responsibility, we have not given up hope – yet. President Bush went on to say, “Keeping America competitive requires us to be good stewards of tax dollars. Every year of my presidency, we have reduced the growth of non-security discretionary spending – and last year you passed bills that cut this spending.” That statement could not have been more accurate. A week after his address, the President sent Congress his Fiscal Year 2007 Budget Request. He promised in his State of the Union address, “This year, my budget will cut its [non-security discretionary spending] again, and reduce or eliminate more than 140 programs that are performing poorly or not fulfilling essential priorities.” After a brief analysis of the 2007 budget request, it looks like another year of battling for programs to help our government meet its responsibility for “the poor and the elderly” – not to mention people with disabilities. Before we begin this new challenge, let’s look back at the months preceding passage of the Budget Deficit Act of 2005. Advocates from across the nation came together to join forces in fighting against cuts to Medicaid, Medicare, Temporary Assistance to Needy Families (TANF), student loans, and other reductions that target people who are poor, disabled or elderly, and those trying to get an education. Those coalitions, organizations and grassroots members who sought to educate legislators about the repercussions of these deficit reduction measures worked tirelessly and fought a good fight to lose by only three votes in all of Congress. The Senate voted on the bill before leaving for the December recess and came up with a 50-50 tie, which Vice President Dick Cheney broke with his vote for approval of the conference report with a few minor changes that sent it back to the House for a final vote. The final vote was along party lines, with 13 Republicans joining all the Democrats. There are at least two positive provisions in the legislation. The Money Follows the Person Demonstration Act was funded and the Family Opportunity Act was included in the bill. Money Follows the Person allows for states to receive grants to increase the use of home and community-based services for individuals with disabilities, rather than institutional long-term care services. The Family Opportunity Act expands Medicaid options for states by allowing them to offer Medicaid coverage to children with significant disabilities living in middle income families through a Medicaid buy-in program, a demonstration program for providing alternatives to psychiatric residential treatment for children, restoration of immediate Medicaid coverage for children found eligible for Supplemental Security Insurance (SSI) under the definition of presumptive eligibility and funding for Family to Family Health Information Centers. Here Is How It Breaks Out: • Higher co-payments and premiums that can lead to necessary services being denied and effectively punishing people with disabilities who have extensive health and long-term service needs. This includes no limits whatsoever on premiums and co-payments that most individuals below the poverty level can be charged; • Reduced benefits. The Congressional Budget Office (CBO) estimates that 1.6 million people would see their benefits reduced in 2015 alone. Most of the reductions in benefits would be for services like dental care, vision, mental health and certain therapies; • A bifurcated health system for children under age 19 that wraps EPSDT (early period screening diagnosis and treatment) services around benchmark plans and raises serious access and quality assurance issues; • Exacerbation of the institutional bias through its application of premiums on Medicaid beneficiaries, because people with disabilities living in the community can be charged substantial premiums while those institutions are exempt; • Changes to asset transfer rules for people who need nursing home care; • Citizenship documentation requirements for those applying for Medicaid; • Changes to home and community-based services (HCBS) that promote HCBS, but gives states the option of putting a capped program within a Medicaid State Plan (to advocates this appears to codify “waiting lists”); • A state option of implementing Cash and Counseling Programs, but only to those who live in their own or in their families homes – not with roommates or in group homes; • Delaying certain SSI payments for up to a year for many low income individuals with disabilities who are found eligible for SSI; • Reduced foster care funding, making it more difficult for states to provide federally funded foster care payments to certain relatives who are raising children because the children’s parents are unable or unfit to do so; • TANF reauthorization that toughens work participation rates, subjects state maintenance of effort dollars to federal TANF work requirements, and develops a standardized set of approved work activities without ensuring states have the flexibility to meet the needs of families that include a person with a disability; • A reduction in American Indian/Alaskan Native health services; • And last but not least, almost one-third of the spending cuts are to student loans. The bill imposes higher fees on students, increases the interest rate on parent loans, eliminates all mandatory spending to administer the country’s higher education programs, and cuts some subsidies to lenders. The challenge for us now, as a community and advocates, is to work with the various federal agencies – the Departments of Health and Human Services, Education, etc. – as they develop regulations for these various programs and consider changes to programs. As this law is implemented, we as disability rights advocates must also document the results in our communities, so that we can bring these facts to our legislators. Also, there have been hints that there may be another round of reconciliation in 2006. The President in his 2007 budget has proposed cutting Medicare by $36 billion, and that is just one reduction. We must continue to advocate for our rights, our health, and for others in our community. Remember, this is a mid-term election year and our legislators are the ones who ultimately pass the legislation on the budget that affects all of us. So, you can make a difference and change the outcomes of these budget battles by casting your ballot on November 7, 2006. 4 A New Approach to Funding Community Living By Senator Edward Kennedy (D-MA) and Senator Mike DeWine (R-OH) A just and civilized society is judged on how it supports its most vulnerable citizens. But, today in America, millions of senior citizens and Americans with disabilities still struggle to access the supports they need to live fulfilling and productive lives in their communities. Our failure as a nation to address the issue of long-term supports is shameful, and it’s time for us to invest in a solution. For this reason, we have introduced long overdue bipartisan legislation to offer greater dignity, greater hope, and greater opportunity to all Americans. We have made much progress in recent decades, especially through Social Security, Medicare, and the Americans with Disabilities Act, but countless senior citizens and persons with disabilities still live in poverty with few choices about how they live their lives. Too many senior citizens and Americans with disabilities are perfectly capable and want to live a full life in the community, but they are forced to give up their independence and self-sufficiency to qualify for Medicaid – the only program that will support them because of the barriers to private insurance. Our bill, the Community Living Assistance Services and Supports Act – the CLASS Act –builds on the investment and commitment that each American has to one another. It makes a simple pact between all Americans: If you work hard and contribute, society will take care of you when you fall on hard times. Everyone can contribute, and everyone can win. We all benefit when no one is left behind. Through a voluntary, national model, a person who is working and voluntarily pays $30 per month into the program will receive a benefit of either $50 or $100 a day, based on their ability to carry out basic daily activities. That person will decide how this assistance will be spent – whether it’s on transportation so he or she can stay employed, or on a ramp to make a home more accessible, or to cover the cost of a personal care attendant or a family caregiver. It will allow our citizens to invest in their own future alongside their neighbors, without being penalized for having a health condition that generally prevents a person from being privately insured. Our bill will save on the mushrooming health care costs for Medicaid – America’s primary insurer of long-term care services — because people can continue to work and not feel forced to give up their jobs and live in poverty so that they become eligible for public assistance. It also will help keep families together, instead of being torn apart by obstacles that make it hard for seniors and people with disabilities to stay at home or with their families in their own communities. Families have so much to contribute, and our legislation will help them do it. The CLASS Act is a hopeful new approach to protecting independence and choice for millions of Americans and enabling them to take greater control of their lives. It will give them the dignity, hope, and opportunity they deserve. It’s long past time to respect the rights and dignity of all Americans, and we look forward to working with all of you to see this bill enacted into law. AAPD MEMBERS: Thank Senators for Using Confirmation Hearings to Send Message to High Court Dear Members: The September 2005 and January 2006 confirmation hearings for Judges John Roberts and Samuel Alito, respectively, prompted several members of the Senate Judiciary Committee to express their concerns about the unnecessarily restrictive approach the U.S. Supreme Court has taken in the area of disability rights. Led by Chairman Arlen Specter of Pennsylvania, a number of Senators from both parties, with strong encouragement from AAPD and others, used the hearings as high-profile public forums to express their concerns about how the Supreme Court under former Chief Justice Rehnquist approached many of the key disability issues that came before it. During the Roberts hearings, Senator Specter called “inexplicable” two key states’ rights decisions under the Americans with Disabilities Act (ADA), where the court scaled back Congressional authority in the area of state employment discrimination and then upheld Congressional authority to prohibit discrimination by state courthouses. Senator Mike DeWine (R-OH) picked up on that theme at both hearings. At the Alito hearing, DeWine brought up the employment case, Garrett v. University of Alabama, and said that he thought “the Supreme Court of this country has restricted Congressional power in a way that I think is not required by the Constitution.” Senator Ted Kennedy (D-MA) also questioned Judge Roberts on whether he thought Congress had “the authority and the power to free this country, free our nation from the forms of discrimination against those who have a disability.” Kennedy took on the dissenters in the state courthouse case, Tennessee v. Lane, noting that it should not be left up to the 50 states individually to decide whether state residents should have equal access to state courthouses. During the two hearings, disability issues were raised and discussed by other senators as well, including Orrin Hatch (R-UT), Sam Brownback (R-KS), Russ Feingold (D-WI), Richard Durbin (D-IL) and Charles Schumer (D-NY). Senator Brownback brought up the infamous 1927 Buck v. Bell decision at the Alito hearing, asking whether the judge thought that ruling upholding forced sterilization of people with mental disabilities should be overturned. As Senator Specter noted during the Alito hearing, “We’re speaking not only to you, Judge Alito, but to the court. The court watches these proceedings. And I think they ought to know what the Congress thinks about making us schoolchildren or challenging our method of reasoning.” I encourage you as AAPD members to thank the many Senate Judiciary Committee members who used their limited time in September and January to question Judges Roberts and Alito on their approach to disability rights, and to express concerns about the Rehnquist court’s track record in this area. For the first time in the context of a Supreme Court confirmation, disability issues were front and center and part of the public debate on broader issues like federalism, states’ rights, civil rights, and statutory construction. It is too early to tell how the Supreme Court’s approach to these issues might evolve under the leadership of Chief Justice Roberts, but he and his colleagues are not likely to soon forget the importance placed on this issue by the senators who questioned him and Judge Alito. From my perspective, the high point in Supreme Court jurisprudence in the area of disability rights and the Constitution was Justice Thurgood Marshall’s concurrence and dissent in the 1985 case Cleburne v. Cleburne Living Center, involving the challenge to a zoning ordinance impeding the establishment of a group home for people with intellectual disabilities. As Justice Marshall noted in his discussion of what level of scrutiny to apply to disability discrimination under the Equal Protection Clause of the Fourteenth Amendment, “Because prejudice spawns prejudice, and stereotypes produce limitations that confirm the stereotype on which they are based, a history of unequal treatment requires sensitivity to the prospect that its vestiges endure. In separating those groups that are discrete and insular from those that are not, as in many important distinctions, ‘a page of history is worth a volume of logic.’” Let us all hope that the recent confirmation hearings served to give the new justices and their colleagues on the Supreme Court a refresher course in this country’s long and troubling history of disability discrimination, and that the hearings will inspire future decisions that breathe life into the constitutional and statutory protections so important to average Americans with disabilities. Andrew J. Imparato AAPD President and CEO AAPD President and CEO 2 White House Conference on Aging Focuses on Long-Term Care, Transportation and Older Americans Act The fifth White House Conference on Aging was held December 11-14, 2005 and focused on issues such as reauthorization of the Older Americans Act, long-term care, transportation and improving Medicaid and Medicare. AAPD had helped to plan and host a mini-conference on disability and aging issues at a White House Conference on Aging designated event in July. For more information on the conference go to www.whcoa.gov. Family and Medical Leave: One of Twenty Family Helpers A new publication from the Center for the Study of Social Policy lists family and medical leave (unpaid and paid) as one of 20 effective state policies to enhance a family’s opportunity and stability. The report assembled research on effective policies in the following areas: employment, income and asset growth, health, education and healthy family relationships. The full report and report cards for all 50 states and the District of Columbia can be found at www.policymatters.us. Who Are AAPD Members? • 11% have been AAPD members for more than five years. • 78% are registered to vote; 70% voted within the past two years. • 73% own personal computers. This is just a sampling of the information obtained through a national telephone survey conducted of AAPD members last fall, thanks to a generous grant from IBM. Watch for the results on the AAPD website and in AAPDnews. Independence Technology and SAP Provide Lead Sponsorship for March 8th Annual AAPD Leadership Gala "At Independence Technology, we are committed to increasing the independence of people with disabilities, allowing them to participate more fully, independently and spontaneously in life. Our iBOT® Mobility System is an example of our commitment to this community, our investment to bring this truly revolutionary product to market is unprecedented. We are proud of our support of AAPD as it exemplifies our commitment to the disability community. We are thrilled and excited about our sponsorship of the 2006 Leadership Gala. AAPD is a great organization with an important mission. We wish AAPD much success with this celebration and look forward to our participation."” Gregg Howard, Vice President Sales Independence Technology "At SAP, we strongly believe that everyone, without limitation, should have the opportunity to pursue his or her talents to the fullest. Our partnership with AAPD is a natural extension of SAP's commitment to making accessible solutions for our employees, customers, and partners worldwide. As evidenced by the work taking place at our Accessibility Competence Center and collaboration in the hi-tech industry, cutting edge research and development is taking place so that all have access to technological resources, thereby lessening the digital divide." Mark White, Chief Financial Officer SAP America, Inc. Acclaimed Disability Rights Leader John D. Kemp to Receive 2006 Henry B. Betts Award: Award Presentation to be Made at the March 8th AAPD Leadership Gala The Henry B. Betts Award Jury has selected John D. Kemp, a renowned disability rights leader and attorney, and AAPD’s co-founder, to receive the 2006 Henry B. Betts Award. Kemp is a Principal at Powers, Pyles, Sutter & Verville, PC, a Washington, DC law firm, where he specializes in health care, rehabilitation and disability law. Kemp is also working with his clients to find new ways for children to learn and utilize accessible technology and universal design for learning. Previously, he served as President and CEO of HalfthePlanet Foundation, President and CEO of VSA Arts, and Executive Director of United Cerebral Palsy Associations. He currently serves on the State Department’s Advisory Committee on Persons with Disabilities and previously served for seven years on the National Council on Disability, appointed by former President Clinton. In 2004, he co-authored and co-edited Reflections from a Different Journey, a collection of essays offered by adults who were raised from birth or early childhood with a disability, and which offers advice that people with disabilities want all parents to have about parenting. Born without arms and legs, Kemp inspires others to achieve the impossible through knowledge, experience, vision and persistence. In fact, he has said that his disability has given him an edge in achieving his goals. In 1989, The Prince Charitable Trusts and the Rehabilitation Institute of Chicago (RIC) created the Henry B. Betts Award, which is now administered by AAPD. The award presentation will be made collaboratively by RIC and AAPD at the March 8th Gala. CWA’s Barbara Easterling to Receive Linda Chavez-Thompson Award at Gala The Linda Chavez-Thompson Award was established by AAPD in 2004 to recognize an individual from within the labor movement who has demonstrated extraordinary leadership in including people with disabilities and their families as a part of the labor movement and U.S. workforce. This year, AAPD is greatly honored to present the award at its March 8th Leadership Gala to Barbara J. Easterling, the first woman ever to be elected to the second highest office, Secretary-Treasurer, at the Communication Workers of America (CWA). Previously in 1995, Easterling had become the first woman in history to serve as Secretary-Treasurer of the AFL- CIO, the 13 million member federation of labor unions. Easterling has been a leader in the fight to raise money for the Elizabeth Glaser Pediatric AIDS Foundation, and is co-chair of the National Alliance to End Homelessness. She also serves on the board of directors of the National Democratic Institute for International Affairs and the Faith & Politics Institute, is a member of the Spina Bifida Foundation and the Pediatric AIDS Foundation, and serves on the executive committee of the United Way of America and its board of governors. Disability Rights Advocates to Receive Paul G. Hearne/AAPD Leadership Awards at AAPD Leadership Gala Megan O’Neil, Oakland, California is a recognized expert on asset building for people with disabilities. She is the Access to Assets Project Coordinator at the World Institute on Disability (WID), an organization that strives to expand the capacity of lending institutions, asset building programs and disability organizations to increase the inclusion of people with disabilities in poverty reduction programs. A graduate of the University of Texas at Austin, she became a paraplegic in 1995 as the result of a car accident. It was her own experience as a disabled person that led to her advocacy and activism. Life on Supplemental Security Income (SSI) is what made her realize she wanted more from life and from herself. In 2004, she sought to gain experience in the area of asset development. A strong advocate for people with disabilities in the acquisition of capital and assets, she believes poverty is endemic to the disability community and life on public benefits ensures subsistence, often resulting in complacency and endangerment. O’Neil is building bridges between the assets building and disability communities by providing information on how best to serve people with disabilities at all the major asset building conferences. It is her goal to eliminate asset tests on structured savings vehicles and exclude all savings accounts with limited access (penalties occur with early withdrawal) from SSI asset calculations within five years. Anisha Imhoff-Kerr, Albuquerque, New Mexico is advocating to reduce stigma in the educational community. Diagnosed with bipolar disorder at the age of 11, she is now a full-time student at Albuquerque Technical Vocational Institute, double-majoring in political science and psychology. She also works full-time for the New Mexico state government in the Children’s Cabinet. Because of her own teachers’ limited experience in dealing with disabled students, she began advocating for ways to teach educators how to deal with disabled students. Imhoff-Kerr created a Forum for educators on students with mental health issues, held April 2005. Most recently, she formulated a survey and a list of questions, surveying 450 students and 30 teachers about their knowledge of mental health topics and special services. She found that there was little knowledge in this area. She intends to fold the survey’s findings into the expansion of the Forum. Imhoff-Kerr also uses her own experiences to help others through State of Mine, a nonprofit youth-run advocacy organization she created. In 2004, she was awarded the Amy Biehl Youth Spirit Award in recognition of her work with State of Mine and in the community promoting mental health awareness. Imhoff-Kerr envisions law school in her future and would like to widen the work she’s done for college mental health awareness and recruit other youth advocates to continue and expand upon the work she is doing. Medicaid Commission Update By Gwen Gillenwater, a Medicaid Commission Member and AAPD Senior Director for Public Policy and Outreach When the Medicaid Commission met in Washington, DC, this past January to begin their deliberations on making recommendations to the Administration and to Congress to ensure the future of the Medicaid program, their focus was on eligibility populations. This was consistent with a schedule that had been adopted in October 2005 for the next five meetings of the Commission and the agenda for each, as follows: • January 2006 – Considering fiscal constraints, who should be served and why? • March 2006 – How do we get the best quality acute and preventive care for our public dollars? • May 2006 – How do we get the best quality long-term care for our public dollars? • July 2006 – What are the tools to making our dollars go farther? How do we improve the infrastructure for quality care? • September 2006 – What are the tools to making our dollars go farther: information technology, fraud and abuse and financing? At the January meeting, the Commission heard from many experts and representatives about Medicaid eligibility, private insurance’s role and state practices. Dr. Diane Rowland, Executive Director of the Kaiser Commission on Medicaid and the Uninsured, and Nina Owcharenko of the Heritage Foundation both talked about who should and should not be covered by Medicaid and why. Joy Johnson Wilson, a member of the Commission, who is the Federal Affairs Counsel and Health Policy Director at the National Conference of State Legislatures (NCSL), and Jim Frogue, chief liaison to state policy projects for the Center for Health Transformation (a group headed by Newt Gingrich), spoke about state responses to increased pressure on Medicaid enrollment and public financing. In addition to these presentations, the Commission heard from the states of Idaho, Massachusetts and West Virginia about their own state reform efforts, usually involving 1115 waivers.Waivers are state programs approved by the Centers for Medicare and Medicaid Services (CMS) that depart from ordinary eligibility or benefit rules for temporary periods to test new innovative policies but often also to expand eligibility, coverage or services or save on budget expenses. Representing those states at the meeting were their governors, secretaries of health and human services, and Medicaid directors. At one point, there were two sitting governors testifying, two sitting governors on the Commission listening, and two former governors chairing the meeting – not to mention that Secretary Leavitt is also a former governor. Throughout the Medicaid debate, the states have pushed for increased flexibility to administer and implement the Medicaid programs within their own states. The 1115 waiver programs are presently a means with which states have some flexibility to “experiment” with Medicaid. Long-Term Care Takes Center Stage: On the first night of the meeting, Health and Human Services Secretary Leavitt, who appointed the Commission, encouraged the Commission members to look closely at long-term care as a priority. At the present time, about one-third of Medicaid’s budget goes to long-term care. So it is certainly understandable that the Commission should especially consider recommendations involving long-term care. At the recent White House Conference on Aging, long-term care was the target of many of the recommendations. Also, on December 15, 2005, the National Council on Disability (NCD) released its report on The State of 21st Century Long-Term Services and Supports. The next meeting of the Commission is tentatively scheduled for March 14 and 15 in Atlanta, Georgia. The meeting focus has been changed from the original schedule and will be on long- term care. Anyone can make public comments during the Commission’s meeting, as well as submit written proposals or testimony for the Commission’s consideration. For example, ADAPT (an activist grassroots disability network) submitted a proposal to the Medicaid Commission entitled “Programmatic/Cost Efficient Medicaid Changes to End the Institutional Bias,” which focuses on “how Medicaid’s long-term services and support system can more effectively serve more people with disabilities and older Americans in the community by reforming the institutional funding bias that has existed since 1965 – and without block granting or arbitrarily capping Medicaid funding.” A member of ADAPT will be testifying at the March meeting. Recommendations made by NCD in its December report should also be submitted to the Commission. NCD states in their report summary, “the development of long-term services and supports (LTSS) comprehensive policy will define the future economic independence of Americans with disabilities. The U.S. is a world leader in extending life and eradicating disease, but it has failed to develop an LTSS public policy that truly integrates disability as a natural part of the human experience.” Written submissions to the Commission should be sent by email to Medicaid. Commission@hhs.gov. Visit AAPD’s website for additional Commission information, including dates and locations of future meetings at www.aapd.com. Medicare Part D Experiences Problems; Administration and Congress Offer Temporary Fix Since the initial implementation of the Part D Medicare Prescription Drug benefit on January 1, 2006, participating beneficiaries, pharmacists, drug plans, state governments and the Centers for Medicare and Medicaid Services (CMS) have faced a series of technical problems and access issues. For example, pharmacies across the country have reported difficulty in confirming that dual eligibles (individuals eligible for both the Medicare and Medicaid programs) who were said to have been automatically enrolled in Part D, were actually enrolled in a plan. Some are also finding that their medications are not covered under their current formulary and are, therefore, paying high out of pocket costs. In response to these problems, CMS has instructed insurers participating in Part D to provide beneficiaries with a 30-day emergency supply of medications, and to voluntarily extend the 30-day emergency supply while dual eligibles transition onto and between Part D plans, regardless of whether or not the medication is covered under their Part D plan. Another option for dual eligibles to consider is to apply for an exception to their formulary, asking their prescription drug plan to reimburse for their medication as if it were a part of the formulary. Legislation to correct some of the implementation problems has been introduced in both the House and Senate. However, discussions between the Senate Finance Committee, Health and Human Services Secretary Michael Leavitt and CMS Administrator Mark McClellan may lead to more rapid solutions to the Part D implementation problems. The Senate Finance Committee hosted a hearing in February on the implementation of Part D. In addition, CMS has agreed to issue a timeline for solving Medicare Part D problems. From Weekly Washington Wire and the law firm of Powers, Pyles, Sutter and Verville, PC 5 Medicare Rights Center Needs Feedback The Medicare Rights Center needs to hear about all of the problems you or someone you know is having with the Medicare Part D benefit. With this information they will be able to work for a better less confusing drug benefit. Submit your stories to www.medicarerights.org/partdstories or call (202) 589-1310. Need Help with Medicare Part D? Regional Assistance Centers Available For general Medicare Part D help, go to www.cms.gov or call (800) MEDICARE or (877) 486- 2048 (TTY). For specific information regarding a personal prescription drug problem call the regional center in your location. CMS' Ten Regional Office Part D Assistance Centers, the States They Serve and Their Phone Numbers Region One Boston - CT, MA, ME, NH, RI, VT (617) 565-1232; (617) 565-1343 (TTY) Region Two New York - NJ, NY, PR, VI (212) 616-2222; (212) 264-2355 (TTY) Region Three Philadelphia - DC, DE,MD, PA, VA, WV (215) 861-4226; (215) 861-4440 (TTY) Region Four Atlanta - AL, FL, GA, KY, MS, NC, SC,TN (404) 562-7500; (404) 331-2867 (TTY) Region Five Chicago - IL, IN, MI, MN, OH, WI (312) 353-7180; (312) 353-5693 (TTY) Region Six Dallas - AR, LA, NM, OK,TX (214) 767-6401; (214) 767-8940 (TTY) Region Seven Kansas City - IA, KS,MO, NE (816) 426-2866; (816) 426-7065 (TTY) Region Eight Denver - CO, MT, ND, SD, UT, WY (303) 844-4024; (303) 844-3439 (TTY) Region Nine San Francisco - AS, AZ,CA,GU,HI,MP, NV (415) 744-3602; (415) 437-8311 (TTY) Region Ten Seattle - AK, ID, OR,WA (206) 615-2354; (206) 615-2296 (TTY) Most offices are open 8:30 am to 5:00 pm. DMD Teaser: Jenae Eby, a high school student, with mentor Jamie Autrey, director of the Art Department at the University of Alaska Southeast, holding Jenae's artwork. Jenae's Disability Mentoring Day (DMD)™ participation resulted in a campus-wide show of her artwork. 2005 Disability Mentoring Day™ Saw Record Participation: More than 12,000 Mentees and 10,000 Employer Mentors Participated Once again this year, AAPD’s Disability Mentoring Day program (DMD)™ proved to be a huge success across the country. According to AAPD’s DMD National Coordinator, JT Taransky, “DMD had record participation. There were DMD programs in every state in the country, including regions in Mississippi and Louisiana recently devastated by Katrina.” Over the years, DMD has evolved into a diverse program comprised of numerous different models, with some areas including Chicago and Minneapolis using the “official” Disability Mentoring Day as the launching point for yearlong events, while others continue to use DMD for one day job shadowing or career development workshops and job fairs. Melody Akers, a DMD local coordinator in Princeton, West Virginia, says, “DMD is a great opportunity for students with disabilities to receive information about the resources available to them and help them prepare for a future in the workforce. It also helps educate employers about people with different disabilities and their capabilities.” The success of the program,Taransky explains, comes from the continued participation of AAPD’s extraordinary corps of volunteer local coordinators, as well as the corporations, federal agencies and small businesses who are willing to take time out of their schedules to mentor students and job seekers and to offer financial and in-kind support. AAPD promotes long-term relationship building between the DMD mentors and mentees. As an example, in Idaho Falls, Idaho, two students plan to do additional work at their mentoring sites – one in a kitchen of a restaurant and catering business, the other as an aide in a kindergarten class. The school district’s work-based learning coordinator will facilitate these activities during the second trimester and the students will receive high school credit. Anna Hay, the DMD Wisconsin State Coordinator and Local Coordinator in Milwaukee, Wisconsin, who is employed by Independence First, the Independent Living Center in Milwaukee, clearly articulates the connection between DMD and the larger issue of disability rights and advocacy. Hay says that DMD effectively “reinforces the goals of the ADA: equality, opportunity, full participation, independent living and economic self-sufficiency.” DMD has earned a national reputation for excellence, but don’t just take our word for it. Gary Souther, a manager at the Hot Springs, Arkansas, Red Lobster (a Darden restaurant) called Barry Vuletich, his DMD Local Coordinator, and asked if his students would like to participate by taking an in-depth look into their operations and enjoy a meal at no cost. Darden Restaurants provided food and mentoring experiences to dozens of locations around the country. AAPD continues to support the creation of positive experiences for all participants. If you would like to get involved in DMD or to find a program near you, please visit the DMD website at www.dmd-aapd.org. Sincere thanks is extended to all DMD corporate and public sponsors, who are recognized on the DMD website: www.dmd-aapd.org. SAP and AAPD’s New E-Mentoring Program On DMD2005, AAPD announced a joint E-Mentoring Program with SAP. DisabilityMentorNet is the world’s premiere online mentoring program for people with disabilities. AAPD is grateful to SAP for its tremendous support in founding and sponsoring the High Technology Disability Mentoring Program and Disability MentorNet. Disability MentorNet comes as a result of the strong SAP/AAPD partnership to use technology to bridge gaps in employment for people with disabilities. By way of DisabilityMentorNet, people with disabilities seeking increased mentoring opportunities will be able to use email to create, maintain and enrich relationships with mentors in their field of interest, both around the country and internationally. This will also make it possible for them to have year round mentoring opportunities in ways that have not previously been available. Accessibility and Usability of Community College Websites By William Erickson, M.S., Cornell University Because the Internet is increasingly the main way that colleges offer student applications, registration and information (in 2003, nearly 81% of U.S. colleges offered online admission applications), Cornell University is exploring accessibility and usability issues relating to community college websites. Even when a website is technically accessible, it can be designed in ways that make it especially difficult or unusable to a person with a disability. Such problems can present serious technological barriers for some persons with disabilities to access higher education. This project evaluated how well the home pages and online applications of 30 community colleges conformed to federal government accessibility standards (found in Section 508 of the Rehabilitation Act). Cornell’s research found that every college website evaluated had accessibility issues, with some significantly worse than others. It also asked individuals who use screen readers and/or magnifiers, individuals with reading disabilities, and a control group to attempt specific tasks that a potential student would need to perform, such as completing the online application on two of these sites (“usability” testing). Of particular interest is that many of the usability problems encountered by the testers with disabilities are also issues for persons without disabilities. Thus, fixing these problems will benefit all users. This project will also assess the level of awareness of community college administrators regarding these issues. The ultimate purpose of this three year project is to determine the scope of the problem, increase awareness of accessibility and usability in higher education and create a “toolbox” to assist institutions in identifying and addressing these issues on their own websites. These efforts are part of a Field Initiated Development project funded by the National Institute for Disability and Rehabilitation Research (NIDRR). For more information regarding this project, please email William Erickson at Cornell University’s Employment and Disability Institute at wae1@cornell.edu. AAPD and Cornell University are in a five year collaboration to conduct research and host Policy Forums to discuss the employment of people with disabilities. Members Speak is a new feature in AAPDnews. In future issues, AAPDnews will interview members of AAPD.We will ask them to talk about what issues they believe are of most concern to people with disabilities, or just what is on their minds in general.We encourage readers to respond to Members Speak and we will run the responses (in the newsletter or on AAPD’s website at www.aapd.com.) AAPD is an inclusive organization that welcomes all opinions; those expressed in this column do not necessarily reflect the opinions of AAPD staff or board. Members Speak: << MEMBERS SPEAK Sylvia Caras, Ph.D. – Santa Cruz, CA: Sylvia Caras is the founder of People Who Email and Internet Resources, Board Chair for California Protection and Advocacy, consultant to the board of World Network of Users and Survivors of Psychiatry and initiator, Prevention of Violence self-defense class for women with psychiatric labels among other titles. She has been published in more than 12 national and international publications and had made more than 19 presentations to the international community. Two issues of importance to Caras are language and mainstreaming. She believes until we all come to the table without labels, we will not be able to accomplish our goals, especially in the area of employment. In her work Words Matter (which can be found at http://peoplewho.org/documents/wordsmatter.htm), she addresses how words specific to disabilities can add to separation and shaming, especially in the area of mental health. Further, many of the new “politically correct” terms do not define who anyone is, and too often place the person in the position of being a victim. Some terms, used to differentiate high functioning or low functioning individuals, create barriers to peer support and organizing. Perhaps, according to Caras, we are hurting ourselves more than helping ourselves with the language we use today. After all, what does having a physical impairment really mean? Think about it. Go to her website and let her hear from you. Sharon Head – DeSoto, MO: Sharon Head has been married for 40 years to Larry, a retired autoworker. She has one grown son, Varon, and one slightly elderly Lab, who rules the house. Head has been a special education teacher since 1985, teaching mostly very bright students with learning disabilities. She had a stroke in 1995; end result: partial right-sided paralysis, leg brace, cane and slight speech impediment. “AAPD is in the forefront of the disability community! It makes me proud to be a member and supporter when I see mention of the organization in newspaper and magazine articles. It is to be hoped that this will continue in 2006, and beyond. It troubles me; however, when I perceive that many in the disability community are rabidly opposed to things in which I firmly believe. They do not speak for all the disabled. They don’t speak for me. Even before my entry into the world of disabilities, I supported choices in life and in the end of life. As to most of us, I hope for a peaceful end after a long, happy life. Unfortunately, that hope is not always realized. Having personally known three people whose lives ended in misery, I would like the option of choosing (as much as possible) a dignified death. I recently read an editorial in which a man stated that Oregon’s assisted suicide law is leading to a “slippery slope.” It sounded as if he foresaw a time when people will be coerced into ending their lives with help, or even a time when euthanasia becomes commonplace. Somehow, I can’t see either happening. I believe in my and other’s rights to make end-of-life choices. Luckily, people with disabilities are as varied as is the general population. After all, that’s where many of us started out. I know there’s room for a variety of opinions within the AAPD. That’s why they have my support.” If you are interested in being interviewed for this feature, please email the AAPDnews editor at aapdeditor@aol.com. AAPD Website: A Comprehensive and Timely Guide to Disability News and Opportunities For AAPD members, but also for other disability rights advocates and friends interested in accessing up-to-date disability and legislative news and updates, AAPD’s website (www.aapd.com) is a valuable resource to visit on a regular basis. It is particularly important to note that AAPD’s website contents change frequently and news is updated daily, with particular attention paid to the Spotlights section at the top of the homepage. Because AAPD’s newsletter, AAPDnews, is printed on a quarterly basis, it is not possible for it to cover “late breaking news” or report in a timely basis on advocacy efforts. But AAPD’s website does achieve this quite effectively. Additionally, while the newsletter has space constraints, the website has none at all. AAPD’s website is also interactive. Web visitors can download award applications, intern program applications, samples of advocacy letters to send to elected officials, and other important information. Further, AAPD invites members and other advocates to tell their stories on www.aapd.com. The AAPD website has a full description, volunteer information and applications for AAPD’s core national programs: • Leadership Development, including internship and awards programs • Mentoring and Career Exploration • Political Participation, encompassing voter education and get-out-the-vote efforts • Advocacy and Public Policy • Membership and Member Benefits The website also provides critical and timely disability news and resources and other issues of interest to people with disabilities, to include: • Spotlights – focusing front-and-center at the top of the homepage on issues most critical to people with disabilities currently in the news, on Capitol Hill and in the Courts • Disability Resources - links to other organizations, publications, products and services • Links to archived issues of AAPD’s Justice For All listserv postings • Employment Opportunities • Scholarships and Awards Programs • Personal Stories And of course, the AAPD website provides information on its own programming and history, including: • AAPDnews archived issues • AAPD Policy Positions and Activities • AAPD’s Annual Report • Prior AAPD Events AAPD welcomes your ideas and feedback regarding the website at www.aapd.com/docs/feedback.php. And be sure to share this website information with your friends, family, and fellow disability rights advocates. AAPD Disability Vote Project at Work Across the Country To effectively establish electoral power for the disability community, AAPD’s Disability Vote Project (DVP) is working to build a nonpartisan, consistent and identifiable bloc of voters with disability interests. DVP provides direct support, training and technical assistance to state and national organizations and coalitions that are working to build a powerful disability voting bloc through nonpartisan voter registration and get-out-the-vote efforts. DVP continues to grow and expand its efforts by expanding staff and the number of leaders working on state-level Disability Vote Projects. As an example, the addition of a new fulltime DVP Field Organizer will afford AAPD the opportunity to forge and enhance strong relationships with state leaders and provide on-the-ground training and resources to state coalitions. Additionally, AAPD has formed a DVP Political Participation Committee, which is chaired by AAPD board member Joyce Bender. Additionally, two committees (a sponsoring committee and a steering committee) have been formed by state leaders. The DVP Sponsoring Committee is comprised of leaders from states or national organizations, and who have demonstrated the ability to organize coalitions and raise funds: Corey Rowley (PA), Tom Earle (PA), Joyce Bender (PA), Carol Westlake (TN), Mike Keller (MO), Michelle Bishop (MO), Sue Hetrick (OH), Gretl Glick (GA),Tripp Cook (GA), Richard Simms (Washington, DC),Ana Acton (CA),Gail Kear (IL), Lee Page (Paralyzed Veterans of America),Karen Flippo (National Association of Councils on Developmental Disabilities), Christina Galindo-Walsh (National Disability Rights Network),Yerker Anderson (National Association for the Deaf), and Denise Rozell (Easter Seals). This committee will meet regularly to develop the strategies, parameters and goals of the national DVP, and will act in an advisory capacity to DVP staff. A DVP Steering Committee was also established: Joyce Bender, Michelle Bishop, Mike Keller, Ana Acton, Corey Rowley, Gail Kear, Gretl Glick and Richard Simms. This committee will meet more frequently, and is the equivalent of an “executive committee” to the Sponsoring Committee and the DVP. For additional information about DVP, contact Kelly Anthony at kellyaapd@earthlink.net, (202) 457-0046 (V/TTY). Are You Receiving JFA Email Alerts? If not, would you like to receive these critical alerts distributed by AAPD? Subscribe by sending an email to: majordomo@jfanow.org and type in the words “SUBSCRIBE JUSTICE” in both the subject and message parts of the email. AAPD MEMBERSHIP/RENEWAL APPLICATION __ New AAPD Membership __ Renew AAPD Membership #___________________________ Alternate format: __ Braille __ Cassette __ Large Print __ CD __ Email Name Street City State Zip Phone Email My membership payment for: __ 1 year ($15) __ 2 years ($25) __ Student ($10) __ Limited Income ($10) __ Supporting ($50) (two year renewal plus $25 contribution to support Limited Income memberships) __ Check enclosed #___________ OR __ VISA __ MasterCard __ Discover __ American Express Credit Card # Exp. 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