AUGUST 2003 • VOLUME 5, ISSUE 3 AAPD news IN THIS ISSUE * New DCU Loan Options * Danger in Democracy * 2003 ADA Anniversary Celebration Women with Disabilities and Allies Forum AAPD and the National Organization for Women (NOW) Foundation Join Forces to Sponsor Forum - Don't Delay, Register Today! AAPD and the NOW Foundation will hold a joint forum on disability and women's rights October 17 - 19, 2003, in Bethesda, MD, a suburb of Washington, DC., Titled "Women with Disabilities & Allies Forum: Linking Arms for Equality & Justice for All," the three-day summit is designed to address issues of mutual concern to the feminist and disability rights movements and is the first national conference of this kind. Leaders from both organizations are excited about the potential of the forum and anticipate it will bring together a diverse group of women and men from across the country to discuss a broad range of issues, share ideas, and celebrate AAPD's and NOW's common ground to help create a future that values and embraces all women and girls. Topics to be discussed include: • political activism, • grassroots organizing, • judicial nominees, • Title IX, • inaccessibility of shelters, • economic empowerment, • the state of civil rights in the women's and the disability movements, • abortion, reproductive rights, and custody issues, • health care and care giving, • emerging leaders in the women's and disability rights movements, • violence against women, • aging and disability, • lesbians with disabilities, and • body image. The forum, to be held at the Hyatt Regency Hotel in Bethesda, MD, will kick-off Friday, October 17 at 5 p.m. with a welcome reception and entertainment. Saturday and Sunday will be a combination of plenary sessions, workshops, and facilitated panel discussions. Activities will conclude on Sunday at 4:30 p.m. "Women living with disabilities face multiple forms of discrimination, making it even harder to achieve their goals. Breaking down these barriers is a longstanding priority of the NOW Foundation," said Kim Gandy, NOW Foundation President. AAPD President and CEO Andrew Imparato said about the forum, "Now more than ever, disability rights advocates must cultivate diverse allies in our common struggle for justice, dignity, and respect for human and civil rights. AAPD is delighted to join with the NOW Foundation to bring together leading activists and organizers for an historic opportunity to reinforce and reinvigorate our combined efforts to achieve equality, empowerment, and justice for all." Registration forms can be found on both AAPD's and NOW's web sites: www.aapd-dc.org www.nowfoundation.org. They are also available by mail from AAPD and NOW: AAPD 1629 K Street NW Suite 503 Washington DC, 20006 NOW Foundation 733 15th Street NW Suite 215 Washington, DC 20005 AAPD and NOW are also accepting donations to financially assist others to participate in the forum. Donations can be made online at the NOW Foundation or through the mail to either group. Please mark your gift NOW/AAPD Disability Forum. Fifth Annual Disability Mentoring Day to be held October 15, 2003 2 Co-sponsored by the U.S. Department of Labor Verizon Communications and Honeywell 2003 Lead Corporate Sponsors This year's "Disability Mentoring Day: Career Development for the 21st Century" (DMD) will be held October 15 in at least 48 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and more than 12 other countries. DMD is a partnership between AAPD and the U.S. Department of Labor's Office of Disability Employment Policy (ODEP), with critical support from a host of private corporations. Thanks to the leadership of Hewlett-Packard, DMD is expanding in 2003 to Italy, Spain, the United Kingdom, Ireland, Belgium, Germany, and France. This is in addition to events being organized in New Zealand, Canada, Scotland, Kosovo, and Nigeria. While most DMD activities will take place on or around the official day, DMD in some locations is a kick-off for a year-round effort to promote and organize mentoring opportunities for people with disabilities. Established in 1999 as part of a White House effort to increase the profile of National Disability Employment Awareness Month, DMD is celebrated every October. It was originally patterned after other school-to-work activities such as the National Groundhog Job Shadow Day and began with three dozen student participants. In 2001, AAPD took the lead role and began to build DMD into a major national event. In 2002, more than 3,500 Mentees, almost 700 employer organizations, and more than 130 Local Coordinators participated in the programs at 712 sites in 37 states plus Puerto Rico, the U.S. Virgin Islands, the District of Columbia, and a growing list of nations around the world. In fact, this program has been so successful that this past July U.S. Labor Secretary Elaine L. Chao designated the third Wednesday of October as Disability Mentoring Day (see article on page 5). DMD is designed to enhance internship and employment opportunities for people with disabilities by bringing them together with employers from the public, private, non-profit, and educational sectors for a day of job shadowing and other hands-on career exploration activities. It is a community based program that relies on local creativity to plan activities that best suit the interests and abilities of its students, job seekers, and local employers. Although the core experience is one-on-one job shadowing or group visits to worksites, local event planners frequently choose to incorporate opening plenary sessions featuring guest speakers and/or close with a reception where Mentees and Workplace Mentors can share their experiences. The program provides employers from all sectors with an opportunity to recruit interns, tap a pool of potential future employees, learn more about the experience of disability, develop lasting relationships with disability community leaders, demonstrate positive leadership in their communities, and attract positive media and community attention. Employers can host Mentees at their worksite by collaborating with an established Local Coordinator or serving as an Employer Coordinator (by working independently to recruit Mentees and plan activities). AAPD also welcomes employers to sponsor DMD at the national and/or local levels. How to Get Involved Local Coordinators are the key to Disability Mentoring Day, serving in a matchmaking role between prospective Mentees and Workplace Mentors and organizing DMD activities. If interested in getting involved as a Mentee, Workplace Mentor, or event organizer, please visit AAPD's DMD web site at www.dmd- aapd.org to find the Local Coordinator nearest you or to start a DMD event in your community where an event is not already being organized. If you are interested in playing a coordination role, please review the DMD Toolkit and contact Ollie Cantos, AAPD's General Counsel and Director of Programs, at (800) 840-8844 (V/TTY) or GeneralCnsl@aol.com. There is no required size or timing for a successful event. It could involve just a handful of Mentees, several dozen, or even 100 or more. The event can take place at any point during the year. Ultimately, making a difference, even if it's in just one person's life, is what makes it worthwhile. If you want to read more about the tremendous growth of DMD, go to www.aapd- dc.org and read last year's final report. Labor Secretary Designates the Third Wednesday in October as Disability Mentoring Day On July 22, U.S. Labor Secretary Elaine L. Chao designated the third Wednesday in October as Disability Mentoring Day. In the announcement Secretary Chao said, "I strongly encourage young people, schools, businesses, and government agencies throughout the country to become involved in this important national event." Roy Grizzard, Assistant Secretary of Labor for the Office of Disability Employment Policy (ODEP) said, "Disability Mentoring Day is an opportunity for young people with disabilities to gain firsthand exposure to many of the career options available to them. It will also make employers and the general public increasingly aware that people with disabilities represent a largely untapped resource for sustaining our national economy and well-being." Grizzard also gave special recognition to AAPD for its successful implementation of DMD Dear AAPD members Waking the Giant Andrew J. Imparato, President and CEO ImparatoA@aol.com Dear AAPD Members, At the end of April, the disability rights movement and its partners in the civil rights coalition were dealt a heavy blow in both houses of Congress. The angry reaction of disabled voters, parents of children with disabilities, and our allies has the potential to change the outcome of the 2004 Presidential, Senate, and House elections. On April 29, the U.S. Senate voted 52-41 to confirm Jeffrey Sutton to a lifetime judicial appointment on the U.S. Court of Appeals for the Sixth Circuit; notwithstanding the unprecedented opposition his nomination had attracted from disability, women's, environmental, and civil rights groups. On April 30, the U.S. House of Representatives voted 251-171 to pass substantial harmful changes to the Individuals with Disabilities Education Act (IDEA) - amendments that were adamantly opposed by the disability community, the Children's Defense Fund, and the National Parent Teacher Association. These changes, if enacted into law, would weaken the core civil rights and due process protections disabled students enjoy under current law, decimate federal enforcement of student rights under IDEA, and make it much more difficult for parents to obtain legal representation and prevail when their children's rights are violated. For years, advocates have talked about the more than 30 million voting age adults with disabilities and the millions of parents and grandparents of disabled children as a force to be reckoned with politically. Some have called the disability vote the "sleeping giant" of American politics. At the end of April, that giant received a rude awakening. In light of recent events and the likely outcomes of battles to come in the civil-rights- unfriendly 108th Congress, disability advocates have no choice but to place a higher priority on political activism and advocacy. More groups will join AAPD in our focus on voter registration and get-out-the-vote drives in 2004 and beyond. Political action committees with a disability rights agenda are in the process of forming. Many of the non-profits are creating separate organizations (called "501(c)(4)s" because of the tax code authorizing their existence) that can spend money to influence the outcome of elections (something a traditional tax-exempt non-profit cannot do). Perhaps most importantly, the disability rights movement will work more closely than ever with colleagues in the civil rights, labor, progressive, environmental, religious, and anti-poverty movements. Whether the issue is access to health care, judicial nominations, education policy, tax policy, or civil rights enforcement, the disability community is finding that it has a lot in common with other disenfranchised and marginalized groups. Historically, the disability community in the U.S. has been able to rely on powerful allies across the political spectrum - people like Presidents Abraham Lincoln, Franklin Roosevelt, George H.W. Bush, and Bill Clinton; Senators Hubert Humphrey, Lowell Weicker, Bob Dole, Tom Harking, Ted Kennedy, Orrin Hatch, Jim Jeffords, and John McCain; and Representatives Steve Bartlett, Jim Ramstad, Steny Hoyer, Tony Coelho, Major Owens, Connie Morella, and Jim Langevin. On the Sutton vote in the Senate, disability advocates lost Hatch and McCain. Civil rights advocates also lost Diane Feinstein of California and Ben Nelson of Nebraska, two Democrats who should have known better than to cross the broad-based coalition that had opposed Sutton's nomination because of his extensive record as a champion of a reinvigorated states' rights movement. Of the four announced Democratic candidates for President who are U.S. Senators, the only one who showed up for the Sutton vote was John Edwards (he voted against Sutton in Committee and on the floor). Senators Lieberman, Kerry, and Graham missed the vote, presumably because they were out campaigning. On the harmful House IDEA vote, 34 Democrats joined the 217 Republicans who supported the bill, including Martin Frost from the Democratic leadership (a small number of Republicans, led by disability champion Jim Ramstad, voted against the bill). The Senate may do some damage control. It bears noting that Senator Jeffords risked his political career and gave the Democrats control of the Senate in the last Congress because he was so frustrated with the leadership of the Republican Party on the issue of educating children with disabilities. It seems safe to assume that IDEA will be weakened before the first session of this Republican-controlled Congress is over. To quote labor leader Joe Hill, "Don't mourn, organize." After a week like the one we had in April, we as disability advocates have all the motivation we need to do the political organizing that will enable us to win the war for inclusion, empowerment, and independence. I look forward to working with AAPD's members to build the grassroots army we will need to win MEMBER CHAT To AAPD Members From Diane DeAngelis Director of Marketing and Members Services dianedeangelis@earthlink.net We are pleased to announce that both AAPD's membership and the number of visitors its web site continue to show dramatic growth. Membership has exceeded 50,000 individuals! Many members are taking advantage of the financial services offered by Digital Federal Credit Union (DCU), which to date has underwritten more than 600 Mobility and Access Loans for AAPD members, totaling $17 million. Be sure to read about DCU's NEW Access Loan Program on page 6 for any product, device, or building modification designed to assist someone with a disability. Member Benefits In a previous issue of AAPD News, we announced our new Discount Mail-Order Prescription Benefit that offers substantial discounts on a number of prescription drugs. Call AAPD/Scriptsense for pricing and delivery information at (800) 831-9328 (V/TTY) or visit www.aapd.scriptsense.ca. Are you Aware of the other Benefits offered AAPD Members? In addition to supporting our efforts to promote the economic and political empowerment of all people with disabilities in the U.S. and our Programs (Disability Mentoring Day, Disability Vote Project, Leadership Awards, Internships), your AAPD membership gives you access to Adapted Vehicle Insurance, Car Rental Discounts, and Life Insurance. AAPD's newest member benefit is a discounted subscription to New Mobility magazine. The special one year subscription price is $19.95, a savings of 28 percent over the regular price. You can subscribe to New Mobility from our web site www.aapd-dc.org, call New Mobility with your AAPD membership number and credit card information, or mail your payment to: New Mobility P.O. Box 220 Horsham, PA 19044 Toll-free (888) 850-0344, ext. 209. For more information, refer to your membership materials, visit our web site at www.aapd-dc.org, or call AAPD toll-free at (866) 241-3200 (V/TTY). Volunteer Action for Members Many members have expressed an interest in volunteering for AAPD. You can get involved by volunteering your time for Disability Mentoring Day (DMD) or our Disability Vote Project (DVP), where grassroots efforts are needed for the 2003 and 2004 elections. To volunteer, call (202) 457-0046 (V/TTY) or (800) 840-8844 (V/TTY); or e-mail Ollie Cantos generalcnsl@aol.com for DMD; or e-mail Jim Dickson jamescdickson@earthlink.net for DVP. We anticipate including a member survey in the next issue of AAPD News. To submit suggestions for questions, e-mail dianedeangelis@earthlink.net, call our Member Services office toll free at (866) 241-3200 (V/TTY), or mail suggestions to: AAPD Milford Office 258 Main Street Suite 203 Milford, MA 01757 AAPD Members Elect Five New Board Members AAPD is proud to announce the results of this past June's board election. New board members are as follows: • Former Congresswoman Lynn Rivers of Michigan, • Debra Robinson of Speaking for Ourselves in Philadelphia, • Cheryl Sensenbrenner a disability advocate volunteer in Wisconsin • Michael Takemura of Hewlett-Packard in Texas, • Tony Young of NISH and the Consortium for Citizens with Disabilities in Washington DC, and • AAPD members also re-elected Marilyn Hamilton to another three-year term. Congratulations to the new board members and welcome to the AAPD board. Additionally, thanks to AAPD members for sending in their ballots and making the election successful! Access Loans at DCU A New Option for Financing Purchases In May 2003, Digital Federal Credit Union, also known as DCU, introduced a new product called Access Loans. These loans are for any product, device, or building modification designed to assist someone with a disability. The borrower need not be the beneficiary of the purchase, but must be a DCU member (all AAPD members are eligible to be DCU members). Qualified purchases include, but are not limited to: • Powered-non-vehicle transportation such as scooters, power wheelchairs, stair- climbing power chairs, and all-terrain wheelchairs. • Manual transportation such as standard manual wheelchairs, custom sport wheelchairs, and specialized hand cycles. • Adaptive computer and communications equipment such as air tube systems for spinal cord injuries, voice systems for the blind, and educational and rehabilitation systems for children and adults. • Durable medical equipment such as slings for lifting paraplegics and quadriplegics, breathing systems, and specialized beds. • Rehabilitative equipment such as motorized equipment that exercises muscles and limbs. • Accessible building modifications such as bathroom accessibility, kitchen modifications, widening doorways for wheelchairs, lowering countertops, changing cabinets, modifying sinks and faucets, ramps, elevators, stair climbing devices, and ceiling lifts. "If members don't see what they need on this list, they should contact us and ask," says Tim Garner, DCU's VP of Marketing. "Our intention is to be an affordable financing source for any purchase related to a disability." Qualified members may obtain Access Loans for 100 percent of the purchase amount from $1,500 to $25,000.Terms are up to 72 months. Higher amounts may be considered, and DCU's normal loan underwriting guidelines apply.* Current rates are available on DCU's web site anytime or by calling the credit union at (800) 328-8797 or (800) 395-5146 (TTY) from 8 a.m. to 8 p.m. weekdays and 9 a.m. to 3 p.m. Saturdays, Eastern time. You can also apply by phone 24 hours a day. Other Financing Options DCU's Mobility Loan, introduced in 2002, covers vehicles with special equipment and modifications with terms up to 120 months. DCU home equity loans may also be used to finance any of these purchases and carry the added benefit of tax deductible interest for people who own a home and itemize deductions. Visit the Internal Revenue Service web site at www.irs.gov for more details on deductibility. How Can You Become a Member of DCU Becoming a member of DCU is easy. You can obtain a membership application online at www.dcu.org, request one by e-mail at dcu@dcu.org, by phone at (800) 328-8797 or (800) 395-5146 (TTY), or by stopping by any DCU branch in your area. Simply follow the instructions included with the application and you'll be a member of DCU in no time. *Borrower's credit history, income, and the loan term are considered in loan approval and rate decisions. DISABILITY VOTE PROJECT Danger in Democracy State Laws Keep Voting Rights of People with Disabilities at Risk By Kay Schriner, PhD More than a million individuals with disabilities are in danger of losing their right to vote under state law. Many already have. In an era when it is clearly unconstitutional to disenfranchise on the basis of race or gender, states may still allow for or require the disenfranchisement of people with disabilities. The outrage is that the only two groups of adults who can be kept from the polls are people with disabilities and people who have committed criminal acts. How Does It Happen? An individual with a disability is placed under guardianship, and in many states the judge or guardian may then limit the ward's right to vote by deciding that the person under guardianship is "incompetent" to cast a ballot. Of the 1.25 million individuals under guardianship in the U.S., almost all have lost, or are in danger of losing, their right to vote. Most states adopted these restrictions in the nineteenth century at the same time they began to specifically exclude African-Americans and women from the electorate. Many states also excluded immigrants and paupers. States took this dramatically discriminatory step because they believed that "idiots" and "insane" people (as people with intellectual disabilities and mental illness were called in those days) were unfit to take part in a democracy. "They were not morally or intellectually fit," said state policy makers at the time. These laws have persisted. In fact, many states have re-written their laws to make them more modern, using language that we find more palatable. And some states have been careful to include due process guarantees in their laws; that is, to make sure that a person with a disability can lose his/her right to vote only after individualized assessment and careful consideration. But these steps have done nothing to address the fatal flaw of these laws: they are inherently discriminatory and should be repealed. Combat Ignorance and Discriminatory Thinking of States States may abridge the fundamental right to vote only when there is a compelling state interest at stake. And in this case, no state interest outweighs the rights of Americans to participate in their self-governance. States arguing that they must disenfranchise people based on "incompetence" must answer one question: If this is a necessary step, why don't Kansas, Indiana, New Hampshire, Michigan, Pennsylvania, and Colorado find it necessary? They don't disenfranchise people on the basis of disability. In those six states, democracy works just as well as it does anywhere else. The electorate functions intelligently and competently in choosing its elected officials and passing judgment on various issues brought before it. The good governments of those six states are a good argument against disenfranchising people with disabilities. Another persuasive argument is that people with disabilities are affected by public policy, and should have the right to participate in making those policies. Access to housing, transportation, employment training and civil rights guarantees depend on the willingness of elected officials to make choices reflecting the interests of people with disabilities who must be able to vote to make their voices heard. A third argument against disenfranchisement is that many people affected by these laws pay taxes. Taxation without representation is an affront to all people whose taxes are used to run the country but may be kept from voting. People with disabilities across the nation are rising up in opposition to these laws. Advocates in Idaho mounted a successful campaign to repeal the constitutional provision that excluded persons under guardianship from voting. And in Maine, advocates filed a federal lawsuit challenging the state's exclusion of people under guardianship for mental illness - and won. These success stories demonstrate the power of people with disabilities to change laws that keep them from the polling place. It's time that every state in the Union is challenged to face the myths and prejudices that underlie the disenfranchisement of people with disabilities. New Nursing Organization formed at Rush University College of Nursing On April 10, 2003, a new nursing organization, The National Organization of Nurses with Disabilities (NOND), was founded at Rush University College of Nursing, Chicago, Illinois. The organization was created during a first-of-its-kind national symposium that explored the issues of the acceptance of people with disabilities into the nursing profession. More than 100 people from disability grassroots organizations, nursing education, nursing employment, nursing regulation, and other health care professionals attended the symposium. Andrew Imparato, President and CEO of AAPD, was a speaker at the symposium and has agreed to be a member of the board of directors for NOND. For more information, e-mail Karen J. McCulloh at kjmcculloh@aol.com, Karen N. Batty at karen_a_batty@ rush.edu, or Stacey Carroll at smcarroll@charter.net. ADAPT Sponsors "Free Our People" March Event Designed to Bring MICASSA to the Attention of Congress ADAPT, the national grassroots disability rights group, is sponsoring a 144-mile march from the Liberty Bell in Philadelphia to Capitol Hill. One hundred and twenty people with disabilities, many using wheelchairs and other mobility aids, will begin the march on September 4 in Philadelphia. An additional 80 people in Baltimore will join them on September 12. The marchers are scheduled to arrive on Capitol Hill September 17 where a rally demanding the passage of MiCASSA will be held. ADAPT expects 20,000 people to participate in the "Free Our People Rally." AAPD is a co-sponsor of the rally. For more information or to find out how you can support the march, contact Marsha Katz at (406) 544-9504 or Nancy Salandra at (215) 627-7255. DISABILITY VOTE PROJECT Kay Schriner, PhD New AAPD Membership Renew AAPD Membership Membership No. I need an alternate format for membership materials: Braille Audio Cassette Large Print Computer Diskette Send to my E-mail Address Name Street City State Zip Phone E-mail Enclosed is my membership payment for: $20 (three years) $15 (two years) $8 (one year) I would also like to make a tax-deductible contribution to AAPD in the amount of: $10 $20 $50 Other $ Total Payment $ Check enclosed VISA MasterCard Discover American Express Credit Card Number Expiration Date Name on Credit Card Signature AAPD MEMBERSHIP SERVICES • P.O. Box 97045 • Washington DC 20090- 7045 Call toll-free (866) 241-3200 (V/TTY) • Visit our web site at: www.aapd- dc.org Please call or mail notification of any address changes. AAPD MEMBERSHIP/RENEWAL APPLICATION AARP Study Shows Older People with Disabilities Want to Remain in Community According to a recent study by AARP, "Beyond 50 2003: A Report to the Nation on Independent Living and Disability," Americans with disabilities age 50 and over want independence in and control over their daily lives but often can't afford to pay for it. The national survey said 51 percent of people 50 and over with disabilities are managing independently. Forty-nine percent receive regular help with a daily activity, such as cooking, bathing, or shopping. More than half those with disabilities in this age group - 53 percent - also reported being unable to do something they needed or wanted to do in the past month. John Rother, policy director at AARP, the country's largest organization for people 50 and over, said "Services are available such as adult daycare, home healthcare, and Meals-on- Wheels. They are not universally available, however, and whether people get such services depends on where they live." "Many of the needs people expressed were very modest," Rother said. "Contrary to the idea that this is an expensive population to serve with round-the-clock needs, many just want to get outdoors, go to a concert, go shopping, things that volunteers could help out with." Of those who received help, most said volunteers, including family members or friends, helped them. Most people - 61 percent - strongly preferred this type of help, and only one out of three uses community-based services. Almost 25 percent of the study group needed more help with daily activities than they receive now. Some needs could be met by the provision of modest equipment such as walkers and wheelchairs and by new technologies, AARP said. "People are increasingly asking for more services at home and community-based services so they can live independently," said Mary Jo Gibson, lead author of the study. "There's a gap between what people say they need and what's available, and not having enough consumer direction and services." Among AARP's recommendations: more consumer direction and services in programs such as Medicaid; more home modifications such as grab rails, better lighting, and ramps; public financing for long-term supportive services needs to be reoriented toward more options for home and community-based care; and communities need to be made more physically accessible for people with disabilities. Inadequate health insurance coverage is also a major problem experienced by people 50 and older with disabilities. This is even true for those with Medicare coverage, which does not pay for prescription drugs, the report said. One out of three reports specific needs, such as for equipment, not covered by health insurance. The study also reported the following: • people with disabilities 50 and older want more direct control over what long-term support services they receive and when they receive them, • disability rates have declined sharply for less severe levels of disability, • many people with disabilities need long-term support services and equipment in their homes and communities, • on the average, people with disabilities 50 and older give their communities a grade of B minus to C plus as a place to live for people in their condition, • inadequate health insurance is at the top of the list of problems, and • 33 percent of people with disabilities aged 50 and up had postponed needed healthcare because it costs too much. AARP is a nonprofit, nonpartisan organization whose members are at least 50 years old. The report is based on commissioned research, including a telephone survey of 1,102 people with disabilities aged 50 and older, with an error margin of 3 percentage points. You can find the report at the AARP web site: www.aarp.org. AAPD Celebrates 13th ADA Anniversary with July 23rd Program On July 23, AAPD celebrated the 13th anniversary of the Americans with Disabilities Act (ADA) by co-hosting an event with Microsoft Corporation in the Members Room at the Library of Congress. This included the presentation of "Justice for All" awards to six disability champions. Two members of the U.S. Senate, a business leader, and three grassroots leaders received the 2003 awards for their demonstrated commitment to the disability community: Senator Christopher J. Dodd (D-CT), Patricia Bell Garrett, Sue Hetrick, David Jayne, Senator John McCain (R- AZ), and Thomas J.Tauke. Former "Justice for All" award winner, Senator Tom Harking (D-IA), James Weisman, Chairman of AAPD's Board of Directors, Jack Krumholtz, Director of Federal Government Affairs and Associate General Counsel, Microsoft Law and Corporate Affairs, Lex Frieden, Chairperson of the National Council on Disability, and Benjamin Wu, Deputy Under Secretary for Technology at the U.S. Department of Commerce, participated in the awards ceremony. Additionally, a panel discussion on policy progress and ongoing challenges to people with disabilities was led by Al Hunt, executive Washington editor of The Wall Street Journal and panelist on CNN's "The Capital Gang." Panel members included an intern from the National Organization on Disability, and members of AAPD's class of 2003 Congressional Interns and Microsoft-AAPD Federal IT Interns. Since 1995, AAPD has sponsored an event to commemorate ADA's anniversary. In 2001, AAPD added the "Justice for All" Awards to recognize individuals who have been extraordinary champions of political and economic empowerment for people with disabilities. The first year's awardees were Senators Bob Dole, Tom Harking, Orrin Hatch, and Ted Kennedy as well as esteemed grassroots organizers Mark Smith, leader of the Mississippi Coalition of Citizens with Disabilities, and Sarah Triano and Daniel Davis, co-founders of the National Disabled Students Union. The 2002 awardees were Congressional champions John Conyers, Jr., Steny Hoyer, Pete Sessions, and John Shimkus; Marissa Johnson, President of the National Youth Leadership Network; and Kathy Bushkin, President of the AOL Time Warner Foundation. 2003 "Justice for All" Award Recipients Senator Christopher J. Dodd (D-CT) played a critical role in the October 2002 passage of the "Help America Vote Act" (HAVA) and has been a longtime champion of all children on the Senate Health Education Labor and Pensions Committee. Patricia Bell Garrett of Birmingham, Alabama, whose employment discrimination case was heard before the United States Supreme Court and tested Congress's authority to apply the ADA to state employers under the U.S. Constitution. Ms. Garrett was director of OB/GYN neonatal services for the University of Alabama- Birmingham Hospital. When diagnosed with breast cancer, she took a leave of absence; when she returned to work, she was given a job demotion. Ms. Garrett's case continues to progress in the lower federal courts. Notwithstanding the financial and emotional strain of her litigation, Ms. Garrett has made time to get involved in national efforts to protect the ADA and fight the resurgence of states' rights on the federal bench. Sue Hetrick of Toledo, Ohio, is the Advocacy Program Director at the Ability Center of Greater Toledo in Ohio, has been an advocate for the disability community for more than 12 years since the birth of her son with Down Syndrome and is personally committed to the full inclusion of all people with disabilities into all aspects of life. Ms. Hetrick led the Ohio disability community's efforts to combat the appointment of Ohio attorney Jeffrey Sutton to the Sixth U.S. Circuit Court of Appeals because of Mr. Sutton's record as a states' rights advocate. More recently, Ms. Hetrick organized a national rally of parents, youth, and disability rights advocates on Capitol Hill to protect the Individuals with Disabilities Education Act (IDEA) from harmful amendments that have surfaced during the current reauthorization. David Jayne of Rex, Georgia, who has been living with amyotrophic lateral sclerosis (ALS - also known as Lou Gehrig's disease) for the past several years, has become one of this country's leading advocates and spokes-persons for exposing and changing the outdated policies that imprison thousands in their own homes due to Medicare's homebound restrictions that rob people with disabilities who use home health services of the chance to participate fully in their communities. Mr. Jayne has come to Washington, D.C. several times and enlisted the support of Congress-man Edward Markey, Senators Susan Collins, and Bob Dole, and countless others to create lasting change in the Medicare program. His efforts are very close to bearing fruit as part of the Medicare bill that is currently in conference. Senator John McCain (R-AZ) has been a strong advocate for equal access to technology and civil rights for all people with disabilities and played a critical role in writing the ADA and other disability rights legislation. Thomas J.Tauke is Senior Vice President, Public Policy & External Affairs for Verizon Communications, and a former Member of Congress from Iowa (1979-1991). Mr.Tauke oversees Verizon's policy advocacy at the local, state, federal, and international levels, as well as partnerships with advocacy organizations and consumer groups. He is being given a Justice for All Award in recognition of all of the work that Verizon has done under his leadership to meet the needs of and empower their customers with disabilities. Exploring an International Career AAPD and National Clearinghouse on Disability and Exchange Establish Pioneers Program By Pamela Houston, National Clearinghouse on Disability and Exchange AAPD and the National Clearinghouse on Disability and Exchange (NCDE) recently collaborated on an initiative (Exchange Pioneers) to encourage individuals with disabilities to add an international dimension to their career goals. AAPD and NCDE sought specifically to support people with disabilities in their exploration of the field of international education. It provided five fellowships of $1,000 - $2,000 each to facilitate participation in internships with international exchange offices. Since its inception in 1995, NCDE has seen increased interest and participation in international exchange, from study abroad to volunteer service, from overseas internships to research to short-term work abroad. Exchange program providers are becoming more effective at including people with disabilities in their programs. Still, few people with disabilities are working in the field. People with disabilities can bring a unique perspective to international exchange programs. International exchange professionals with disabilities can be models of success, chipping away at the worries of exchange program staff and promoting pro- active strategies to improve program access. Exchange Pioneers Fellows have a range of disabilities and are diverse in their backgrounds and the paths they have taken to the world of international exchange. Each will spend a minimum of 300 hours interning in exchange offices around the United States - gaining hands-on experience in planning and organizing inbound (to the U.S.) or outbound (from the U.S.) exchanges. Each Exchange Pioneer Fellow is committed to educating the organization where they are interning about disability issues and accommodations. Fellows are : • Christopher Michael Archie, a Health, Physical Education, and Recreation major at Mississippi Valley State University, • John Braxton, Jr., a biology student at Savannah State University, • Takiesa Grant, a biology major at Savannah State University, • Allison LePage, a political science/interpersonal communication major at Western Michigan University, and • Diana Nguyen, an active member of the Santa Clara County Commission for Persons with Disabilities. NCDE is managed by Mobility International USA and sponsored by the Bureau of Educational and Cultural Affairs of the United States Department of State. For more information about international exchange opportunities or preparing for an international career, contact: National Clearinghouse on Disability and Exchange c/o Mobility International USA P.O. Box 10767 • Eugene, OR 97440 Phone (541) 343-1284 (V/TTY) Fax (541) 343-6812 E-mail clearinghouse@miusa.org Web www.miusa.org AAPD AND WASHINGTON Money Follows the Person Act Introduced in Senate Senators Tom Harking (D-IA) and Gordon Smith (R-OR) last month introduced the Money Follows the Person Act of 2003. This is a stand-alone bill version of the Money Follows the Person amendment recently tabled by the Senate. The new bill number is S 1394 and was additionally co-sponsored by Senator Edward Kennedy (D- MA), Senator John F. Kerry (D-MA), and Senator Frank R. Lautenberg (D-NJ). S 1394 puts into bill form the President's 2004 Budget proposal to encourage states to allow money to follow the person, so people who are living in nursing homes or other institutions can receive funding as they move out into the community and partake of community services. This bill does not replace MiCASSA. AAPD encourages its members to speak out about the importance of community living and community services. Contact your senators and representatives and ask them to support this important bill AAPD AND WASHINGTON President's Mental Health Commission Recommends Transforming America's Mental Health Care System On July 22, 2003, President Bush's New Freedom Commission on Mental Health presented its final report "Achieving the Promise: Transforming Mental Health Care in America." The product of a year of study, the report finds that the nation's mental health care system is beyond simple repair. Building on research, expert testimony, and input from over 2,300 consumers, family members, service providers, and others, the report concludes, "traditional reform measures are not enough ...." Instead, it recommends a wholesale transformation that involves consumers and providers, policymakers at all levels of government, and both the public and private sectors. Commission Chair Michael F. Hogan, Ph.D., Director of the Ohio Department of Mental Health declared, "The time has long passed for yet another piecemeal approach to mental health reform. For too many Americans with mental illnesses, mental health services and supports they need are disconnected and often inadequate. The commission has found that the time has come for a fundamental transformation of the nation's approach to mental health care. This report provides the President with a roadmap for that transformation." The commission finds that the current system is unintentionally focused on managing the disabilities associated with mental illness rather than promoting recovery, and that this limited approach is due to fragmentation, gaps in care, and uneven quality. The approach recommended by the commission will move toward full community participation for children and youth, adults, and older Americans with mental illnesses - instead of school failure, institutionalization, long-term disability, and homelessness. The commission presents the President with six goals and a series of specific recommendations for federal agencies, states, communities, and providers nationwide. The goals the commission articulates underscore the urgency and magnitude of the changes it proposes. The commission believes Americans must come to understand mental health is integral to their overall health and recommends mental illnesses be addressed with the same urgency as other medical problems. The stigma attached to mental illness, which discourages people from seeking care, must be eliminated. The commission finds that transforming mental health care demands a shift toward consumer and family-driven services. Consumers' needs and preferences, not bureaucratic requirements, must drive the services they receive. To achieve that goal, the commission recommends changes in federal programs, upgraded state responsibility for planning effective services, and placing consumers and their families at the center of service decisions. Members of minority groups and people in rural areas, the commission finds, have worse access to care and often receive services that are not responsive to their needs. As a result, the burden of mental illness is heavier for these individuals. The commission urges a commitment to services that are "culturally competent" - acceptable to and effective for people of varied backgrounds. The commission's review finds that too often mental illness is detected late not early and that as a result, services frequently focus on living with disability, not the better outcomes associated with effective early intervention. Therefore, the commission recommends a dynamic shift in care, moving toward a model that emphasizes early intervention and disability prevention. As the panel notes, "early detection, assessment, and linkage with treatment and supports can prevent mental health problems from compounding and poor life outcomes from accumulating ...." Achieving this goal will require greater engagement and education of first line health care providers - primary care practitioners - and a greater focus on mental health care in institutions such as schools, child welfare programs, and the criminal and juvenile justice systems. The goal is integrated care that can screen, identify, and respond to problems early. The commission also notes that a majority of adults - even those with the most serious mental illness - want to work, but are held back by poor access to effective job supports, incentives to remain on disability status, and employment discrimination. The commission finds that effective services and supports validated by research find their way into practice too slowly. It calls for a more effective process to make "evidence-based practices" the bedrock of service delivery. The commission recommends that the mental health system move more effectively to harness the power of communications and computer technology to improve access to information and care and to improve quality and accountability. With strong protections for privacy, these technologies can improve care in rural areas, help prevent medical errors, and reduce paperwork. For the full report, go to www.samhsa.gov. AAPD AND WASHINGTON AAPD Interns Janie Mejias is one of seven 2003 AAPD Congressional Interns. This summer AAPD has had the pleasure of working closely with 17 extraordinary individuals who are participating in either the Microsoft-AAPD Federal IT Internship Program or the Congressional Internship Program. Their placements are as follows: Information Technology Interns: • Jason Boston - Transportation Security Administration, U.S. Dept. of Homeland Security • Sherwin Chen - U.S. Dept. of Education • Jo Anna Fairchild - U.S. Dept. of Health & Human Services • Neal Meier - Federal Railroad Administration, U.S. Dept. of Transportation • Chris Nestrud - U.S. Dept. of Labor • Nwokoma Sampson - Federal Emergency Management Agency, U.S. Dept. of Homeland Security • Arun Sankaran - Federal Aviation Administration • Jessie Shulman - U.S. Dept. of Education • David Sylvester - U.S. Patent & Trademark Office • Jose Tejeda - National Science Foundation Congressional Interns: • Joanna Busch - Sen.Tom Harking • Kristina Carrier - Rep. Donna Christian-Christensen • Gene Hermanson - Sen. Max Baucus • Sarah Kinneer - Rep. Danny K. Davis • Janie Mejias - Sen. George Allen • Shayla Parker - Rep. Steny H. Hoyer • Matt Seeley - Rep. James R. Langevin IDEA Protections at Risk in Conference By Janie Mejias, AAPD Congressional Intern Six million children with disabilities currently receive services under the Individuals with Disabilities Education act (IDEA). This act, which ensures a free appropriate public education for students with disabilities, likely will be reauthorized in the next few months. The House passed its version of the reauthorization (HR 1350), by a vote of 251 to 171 on April 30, 2003. HR 1350 threatens to leave children receiving services under IDEA without appropriate accommodations and is likely to result in more discrimination against students with disabilities and their families. The House bill offers the option of creating a three-year individual education plan (IEP), which is likely to decrease parental involvement in a child's education. In addition, HR 1350 eliminates short-term objectives that will make it more difficult for parents and teachers to monitor a student's progress. The disciplinary provisions in the bill have probably attracted the most vehement opposition from the parent and child advocacy community. If enacted into law, the House bill would allow school personnel to remove a student from his or her current educational placement for any violation of school rules. HR 1350 also eliminates the manifestation determination, which is a meeting to determine whether the child's behavior was a result of his or her disability. Without the manifestation determination, it is possible a child could be removed for behavior that is part of his/her disability or that is occurring because of the school's failure to provide an appropriate accommodation. In the event of a dispute regarding a child's placement, it will be harder for parents to access their right to due process under HR 1350. The House bill would create a new one-month waiting period before initiation of due process and would encourage binding arbitration rather than due process. Additionally, the House bill creates a new one-year statute of limitations whereby students and parents will have less time to bring suit for discrimination than they have under current law. Many child advocates and families view HR 1350 as a large step backward in ensuring the educational rights and opportunities for children in special education. Teachers and administrators are the main supporters of the House bill. Amendments like a three-year IEP option, elimination of short-term objectives, and exemption for up to ten states of the requirements under IDEA holds the promise of greatly reducing the amount of paperwork special education teachers must complete. According to the National Teachers Association, half of special education teachers' 53-hour work week is spent with students. The other half is spent doing paperwork, such as 12- to 15- page IEPs, which are required for all students receiving services under IDEA. As a 22-year-old who has previously received special education services, I know how critical receiving appropriate accommodation is to a student's academic success. Many in the special education community, myself included, feel extra paperwork is a small price to pay to ensure every student receives an appropriate education and has an opportunity to live up to his/her full potential. On June 12, 2003, the Senate introduced S 1248, their version of the bill to reauthorize IDEA. This bill protects the civil rights of children better than the House bill. S 1248 allows a three-year IEP option to be offered only if the student has reached age 18. This option is meant to help students transition from high school to a work or a postsecondary education setting. The Senate bill also helps to ensure a child is not penalized for his/her disability. S 1248 would require a manifestation determination before a child is removed for more than ten days from his/her current educational placement except in special circumstances involving drugs, weapons, or bodily harm to self or others. In the event a child is removed from his/her current educational placement, he/she will still have access to educational and behavioral services. Although S 1248 encourages mediation to settle disputes, it makes it easier for parents to access due process. The Senate bill calls for a two-year statute of limitations, which gives parents a year longer to file their complaint. Under S 1248, there is no one- month waiting period and due process may proceed after a meeting with the child's IEP team to try to settle the dispute. This meeting is to be held no later than 15 days after the complaint is received. In addition, the Senate bill allows the judge to set a reasonable amount for attorney's fees if the parents are the prevailing party, in contrast to the House bill, which leaves the issue of compensation for attorney's fees up to the governor. The due process provisions are a very important part of IDEA and remain a key area of concern for lawmakers, parents, teachers, and administrators. Throughout the process of IDEA reauthorization, parents and students have tried hard to have their voices heard. On June 17, 2003, an IDEA rally was held on Capitol Hill. AAPD, the Ability Center of Greater Toledo, the Disability Rights Education and Defense Fund, and other groups co-sponsored the event. Participants spoke passionately about what IDEA means to them and their concerns regarding the current reauthorization. The general consensus among parents and students was the Senate bill protects the civil rights of children more effectively than the House bill. Speakers addressed the need for the full 40 percent federal funding promised by the national government in 1975 as well as enforcement of the existing legislation, which the Senate bill tries to address. Events like the rally on Capitol Hill help ensure lawmakers are aware of the issues important to the people IDEA is meant to protect. The Senate Health, Education, Labor, and Pensions Committee (HELP) marked up S 1248 on June 25, 2003. According to the National Down Syndrome Society, some positive changes were made at the mark up, most notably in the discipline section of the bill. For example, the word "knowingly" was added to the part of the bill that addresses possessing illegal drugs. This change would protect students whose disability prohibits them from understanding they had illegal drugs in their possession. Other positive changes included requiring schools to notify parents that disciplinary action is being taken against their child and making parents aware of the procedural safeguards available. Under the Senate mark up bill, schools will be required to perform a behavioral assessment when disciplinary action is being taken, if one was not already done before the violation of school policy occurred. This assessment is designed to address the behavior problem and help ensure it doesn't occur again. The Senate bill passed out of committee by a unanimous bipartisan vote of 21-0. After the bill is considered and passed on the Senate floor, it will go to a conference committee and ultimately to the President for signature. AAPD members are strongly urged to contact your representatives, senators, and President Bush and urge them to oppose the damaging provisions in the House bill. Your voices can and will make a difference in the reauthorization process! AAPD AND WASHINGTON MiCASSA's Co-Sponsor List Continues to Grow in Congress Medicaid Community Attendant Services and Supports Act (MiCASSA) was introduced May 1, 2003, and has more than 80 co-sponsors. We've been writing and talking and rallying about MiCASSA for several years now. It is time for Congress to act to pass MiCASSA. If your members of Congress have not come on as co-sponsors, contact them and tell them how important it is for you and millions of people with disabilities living in America. For the most up-to-date information on MiCASSA and who is supporting it in Congress, go to www.adapt.org. AAPD BOARD MEMBERS Henry Betts James J. Billy Judy Brewer Judi Chamberlin Tony Coelho Richard Ellis Marilyn Hamilton The Honorable Judith E. Heumann Tim Holmes Andrew J. Imparato John D. Kemp Edward Kennedy, Jr. Paul Marchand Frances Priester Lynn Rivers Debra Robinson Helen Roth Cheryl Sensenbrenner Robert Silverstein Margaret Staton Michael Takemura Fred Weiner James Weisman Duncan Wyeth Tony Young Register and Vote. "Get into politics as if your life depended on it. It does." The Late Justin Dart, Jr. August 29, 1930 - June 22, 2002