IL NET an ILRU/NCIL National Training and Technical Assistance Project Expanding the Power of the Independent Living Movement MEDIA RELATIONS A National Teleconference Participant's Manual July 25, 2001 Contributors to the training materials: Carri George Richard Petty Dawn Heinsohn Anne-Marie Hughey Kristy Langbehn Darrell Lynn Jones Raweewan Buppapong Matthew Taggart Brad Williams Patricia Yeager (c) 2001 IL NET, an ILRU/NCIL Training and Technical Assistance Project ILRU Program NCIL 2323 S. Shepherd Street 1916 Wilson Boulevard Suite 1000 Suite 209 Houston, Texas 77019 Arlington, Virginia 22201 713-520-0232 (V) 703-525-3406 (V) 713-520-5136 (TTY) 703-525-4153 (TTY) 713-520-5785 (FAX) 703-525-3409 (FAX) ilru@ilru.org 1-877-525-3400 (V/TTY - toll free) http://www.ilru.org ncil@ncil.org http://www.ncil.org Permission is granted for duplication of any portion of this manual, providing that the following credit is given to the project: Developed as part of the IL NET: an ILRU/NCIL National Training and Technical Assistance Project. IL NET is funded through a special provisions cooperative agreement with the U.S. Department of Education, Rehabilitation Services Administration, Agreement No. H132B99002. Media Relations A National Teleconference Participant's Manual Table of Contents Agenda i About the Trainers ii List of Trainers and IL NET Staff iii About ILRU v About NCIL v About IL NET vi Sample Materials from California Foundation for Independent Living Centers 1 Request for Bid: Integrated Marketing and Public Relations Campaign for Statewide Non-profit Disability Advocacy Association 28 Sample Materials and Tips from New York Statewide Independent Living Council 33 Tips on Holding a Successful Press Conference 65 MEDIA RELATIONS A Teleconference July 25, 2001 AGENDA Welcome and Introductions California Foundation for Independent Living Centers Public Relations Program - Patricia Yeager - How we got started - How we decided to make this a financial priority - The packet we developed - PR as an advocacy tool - How we decided to hire a professional PR person and how we chose him Q & A Coming in From the Outside: A PR Professional's Point of View - Matt Taggart - Early challenges in doing disability PR How You Can Organize a PR Campaign - Matt Taggart - Why it's Good for Everybody - Identifying issues you want to promote and developing strategies - How we do it at CFILC Q & A Outcomes of CFILC's PR Work - Patricia Yeager Q & A How to Hold A Successful Press Conference - Brad Williams Q & A Analyzing the Results and Impact of Your Press Conference - Brad Williams Q & A Wrap-up About the Trainers Matt Taggart has served as director of media relations for the California Foundation for Independent Living Centers (CFILC) since 1999, managing the organization's public relations and media outreach activities. Matt has penned pieces for Senator Dianne Feinstein, CFILC Executive Director Patricia Yeager and Congressman Doug Ose. His work has appeared in the Los Angeles Times, San Francisco Chronicle, New York Times, Oakland Tribune, San Jose Mercury News and other leading papers. Formerly a Senior Account Executive with a San Diego-based public relations firm, Stoorza, Ziegaus and Metzger, Matt has served as public relations counsel for both private and nonprofit organizations. Prior to that, Matt was a press aide and spokesman for Governor Pete Wilson from 1996 to 1998, with direct responsibility for appointments and judicial press. He was a constituent affairs representative from 1994 to 1995. Brad Williams is the executive director of the New York State Independent Living Council (NYSILC) and serves as the Region II Representative of the National Council on Independent Living. He earned a bachelor's degree in Political Science from SUNY Albany and a master's degree in Public Administration from Russell Sage College. Previously, he was executive director of the Glens Falls Independent Living Center for nine years. Patricia Yeager is the director of the California Foundation for Independent Living Centers and has had a distinguished career as an advocate for persons with disabilities. She has been active in the independent living movement for more than 19 years, promoting access to higher education in Pittsburgh and Denver, shaping public policies, as well as developing and implementing services at ILCs in Denver, Houston and San Diego. Hearing impaired since the age of two, Patricia earned her M.S. from West Virginia University, her home state. She has served on the Rehabilitation advisory council, State Independent Living Council, and State Developmental Disabilities council and Private industry Council in several states. Always active in statewide networks for independent living as well as higher education, she is particularly interested in building local and statewide coalitions of persons with disabilities to work on public policy issues. This interest led her to accept her current challenge to set up and coordinate activities for CFILC, the "trade association" of ILCs in California. Media Relations National Teleconference Trainers Matthew Taggart Director of Communications California Foundation for Independent Living Centers 660 J Street Suite 270 Sacramento, CA 95814 916-325-1690 (V) 916-325-1695 (TTY) 916-325-1699 (Fax) Brad Williams Executive Director New York Statewide Independent Living Council 111 Washington Avenue Suite 101 Albany, NY 12210 518-427-1060 (V) 518-427-1060 (TTY) 518-427-1139 (Fax) nysilc@nysilc.org Patricia Yeager Executive Director California Foundation for Independent Living Centers 660 J Street Suite 270 Sacramento, CA 95814 916-325-1690 (V) 916-325-1695 (TTY) 916-325-1699 (Fax) py@cfilc.org IL NET STAFF ILRU Lex Frieden Laurie Gerken Redd Executive Director Administrative Coordinator lfrieden@ilru.org lredd@ilru.org Richard Petty Carri George Program Director Publications Coordinator richard.petty@bcm.tmc.edu cgeorge@ilru.org Laurel Richards Dawn Heinsohn Training Director Materials Production Specialist lrichards@ilru.org heinsohn@ilru.org ILRU Program 2323 S. Shepherd Suite 1000 Houston, TX 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (FAX) ilru@ilru.org http://www.ilru.org NCIL Anne-Marie Hughey Executive Director hughey@ncil.org NCIL 1916 Wilson Boulevard Suite 209 Arlington, VA 22201 703-525-3406 (V) 703-525-4153 (TTY) 703-525-3409 (FAX) 1-877-525-3400 (V/TTY - toll free) ncil@ncil.org http://www.ncil.org Kristy Langbehn Project Logistics Coordinator kristy@ncil.org Darrell Lynn Jones Training Specialist darrell@ncil.org Raweewan Buppapong Project Assistant toony@ncil.org ABOUT ILRU The Independent Living Research Utilization (ILRU) Program was established in 1977 to serve as a national center for information, training, research, and technical assistance for independent living. In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the U.S. ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the U.S. and Canada. ILRU is a program of TIRR, a nationally recognized, free-standing rehabilitation facility for persons with physical disabilities. TIRR is part of TIRR Systems, a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living. ABOUT NCIL Founded in 1982, the National Council on Independent Living is a membership organization representing independent living centers and individuals with disabilities. NCIL has been instrumental in efforts to standardize requirements for consumer control in management and delivery of services provided through federally-funded independent living centers. Until 1992, NCIL's efforts to foster consumer control and direction in independent living services through changes in federal legislation and regulations were coordinated through an extensive network and involvement of volunteers from independent living centers and other organizations around the country. Since 1992, NCIL has had a national office in Arlington, Virginia, just minutes by subway or car from the major centers of government in Washington, D.C. While NCIL continues to rely on the commitment and dedication of volunteers from around the country, the establishment of a national office with staff and other resources has strengthened its capacity to serve as the voice for independent living in matters of critical importance in eliminating discrimination and unequal treatment based on disability. Today, NCIL is a strong voice for independent living in our nation's capital. With your participation, NCIL can deliver the message of independent living to even more people who are charged with the important responsibility of making laws and creating programs designed to assure equal rights for all. ABOUT THE IL NET This training program is sponsored by the IL NET, a collaborative project of the Independent Living Research Utilization (ILRU) of Houston and the National Council on Independent Living (NCIL). The IL NET is a national training and technical assistance project working to strengthen the independent living movement by supporting Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs). IL NET activities include workshops, national teleconferences, technical assistance, on-line information, training materials, fact sheets, and other resource materials on operating, managing, and evaluating centers and SILCs. The mission of the IL NET is to assist in building strong and effective CILs and SILCs which are led and staffed by people who practice the independent living philosophy. The IL NET operates with these objectives: ? Assist CILs and SILCs in managing effective organizations by providing a continuum of information, training, and technical assistance. ? Assist CILs and SILCs to become strong community advocates/change agents by providing a continuum of information, training, and technical assistance. ? Assist CILs and SILCs to develop strong, consumer-responsive services by providing a continuum of information, training, and technical assistance. Sample Materials from California Foundation for Independent Living Centers CFILC Brochure (Inside Copy) CFILC: Working to Eliminate Barriers, Increase Independence The California Foundation for Independent Living Centers (CFILC) is a statewide, non-profit organization which supports the work of California's more than two dozen Independent Living Centers (ILC) and coordinates efforts to remove barriers to independent living faced by California's 1.5 million people with disabilities. Changing the System, Changing Attitudes The independent living movement began nearly three decades ago as people with disabilities began to recognize their rights to live in their local communities just the same as people without disabilities. What they encountered was a system which channeled people with disabilities into medical settings and treated them as patients. This system, which fostered dependence and limited decision making for people with disabilities, reinforced community attitudes that people with disabilities should be dismissed as unproductive members of society. The ILCs help people with disabilities overcome the individual challenges in their lives -- finding appropriate housing, transportation, quality personal care and employment. The CFILC works with the ILCs to address the broader, community-based challenges which confront all people living with disabilities. Training Movement Leaders Because the independent living movement is dedicated to increasing empowerment and participation, nearly all activities and organizations which support the movement seek to maximize the participation of people with disabilities. Many of the people on the CFILC staff have disabilities, as do a majority of those who work in the ILCs. Training these leaders to become effective advocates for themselves, their consumers and the movement itself is one of CFILC's key goals. Recent training sessions for CFILC and ILC staff members include media and presentation skills; legislative advocacy; briefings on advocacy issues; and project and time management. Through these training sessions, ILC executive directors and empowerment team leaders are improving the organization and advocacy skills which will serve as the foundation for future progress. Addressing Key Issues People with disabilities encounter many barriers to independence. During the last thirty years, some of these barriers (including physical access for the mobility impaired) have been partially addressed through targeted measures such as parking spaces reserved for people with disabilities and mobility accommodations in transportation and architectural design. Yet the mobility impaired represent a small but visible segment of all people with disabilities. Plenty remains to be done in order to gain independence for all people with disabilities. CFILC is working with the ILCs and other concerned individuals and organizations to address the following barriers to independence: Transportation Needs Housing Needs Counseling Economic and Financial Support Personal Care Assistance Assistive Technology The ILCs work directly with people with disabilities to help determine the options available to them. CFILC works with ILCs, policy makers and local communities to expand and improve the options available to individuals. (Fold out Panel) What is Independent Living? Independent living is a philosophy and goal which states that people with disabilities should have the same civil rights, options and control over their lives as do people without disabilities. The consequences of this simple statement are many and those who embrace it are part of a movement which works to eliminate many of the attitudinal, physical and communications barriers faced by people with disabilities as they work towards independence and full integration into their communities. Independent living is about persons with disabilities managing their own affairs, participating in fulfilling day-to-day lives in their communities, making decisions which lead to self-determination and away from dependence on others. Independent living is in direct contrast to the dependence created by institutionalization. In such settings, people with disabilities are segregated from the rest of the community, treated as sick or incapacitated and given little control over their day-to-day lives. The independent living movement rejects each of these outdated notions and works to change community attitudes and government policies which only perpetuate such dependence. (Back Panel) CFILC Mission Statement "To create positive change by networking and providing support and resources to members in order to promote the Independent Living philosophy through unified action." CFILC works to achieve that mission by: * Changing the way people think, their attitudes and behavior towards people with disabilities. * Giving people with disabilities the tools and knowledge they need to speak for themselves and effect change in their own communities. * Acting as role models in leadership, team work and motivation. * Sharing resources among all the ILCs statewide and becoming a network that will allow everyone to work together. * Training the future leaders of the disability rights movement. * Forming a close working relationship with local governments, businesses and church leaders. CFILC offers numerous opportunities for groups and individuals who support the Independent Living philosophy to participate in their work and projects. For information regarding Associate and Friends memberships, please contact the CFILC office at (916) 325-1690, TDD (916) 325-1695, or view their web page at www.cfilc.org. ETL Pamphlet (Inside) What is Independent Living? Independent living is a philosophy and goal which states that people with disabilities should have the same civil rights, options and control over their lives as people without disabilities. The consequences of this simple statement are many and those who embrace it are part of a movement which works to eliminate many of the attitudinal, physical and communications barriers faced by people with disabilities as they work towards independence and full integration into their communities. Empowerment Teams in the Community Empowerment Teams work within local communities to build support for Independent Living Centers (ILCs) and the California Foundation for Independent Living Centers (CFILC). Although people with disabilities should contact ILC staff for assistance with personal issues, Empowerment Team Leaders located in each center provide information on how individuals can join efforts to remove barriers to independence faced by all people with disabilities. The task of changing ingrained attitudes and improving government programs takes substantial time and effort. Yet, through coordinated action and hard work, individuals can and do make a difference. People with disabilities are encouraged to join the Empowerment Teams because their first-hand experiences with barriers provide unique insights which strengthen and motivate other team members. Working to Remove Barriers, Providing Options Empowerment Teams work to change the systems to allow people with disabilities to manage their own affairs, to have fulfilling, day-to-day lives in their communities, to make decisions which lead to self-determination and reduce dependence on others. While ILCs help people with disabilities understand their options and the resources available to them, Empowerment Teams work to expand those options and available resources. Priority Needs People with disabilities encounter many barriers to independence in their communities. CFILC is working with the ILCs and other concerned individuals and organizations to address the following barriers to independence: Transportation Needs Housing Needs Peer Counseling Economic and Financial Support Personal Care Assistance Assistive Technology The ILCs work directly with people with disabilities to help determine the options available to them on these critical issues. CFILC works with ILCs, policy makers and local communities to expand and improve the options available to individuals. (Boxed Somewhere Inside) Services Offered at Independent Living Centers * Information and Referral to Resource Providers * Individual and Policy Advocacy * Peer Counseling * Housing Assistance * Attendant and Personal Assistance Referral * Independent Living Skills Training (Bar on Bottom) Empowerment Team Member Activities Include: * Seminars on Critical Independent Living Issues * Strategy Sessions on Addressing Barriers in Local Communities * Meetings with State and Local Officials on Key Policy Measures * Local Projects to Improve Independent Living Options (Inside Left and Right Flaps) It Takes Community - It Takes People (take out second logo and make title run across both flaps) Most of the barriers people with disabilities face in their daily lives are the result of perceptions and attitudes about disabilities which are deeply, and often unconsciously, held by many in our communities. For instance, up until recently, buildings were not designed to accommodate wheelchairs because most people did not think people using wheelchairs would likely enter them. It is not that the buildings were designed to exclude the mobility impaired, it was simply that buildings were not designed to include them. Raising community awareness of the needs of people with disabilities is one of the independent living movement's most important objectives. Greater awareness of these challenges will make it easier for individuals with disabilities to improve their own lives with better housing, employment and transportation options. In addition, improved awareness will also help focus the attention of policy makers on the legal and regulatory barriers which compound challenges. Advocates of the independent living movement have made great strides during the last three decades to have our legal and political systems recognize the rights of people with disabilities. Yet, in order to achieve the goal of having people with disabilities accepted and included in their communities, it takes communities to recognize and welcome these individuals who overcome so much and seek only to be treated like everyone else. It also takes people. People who will join in efforts to improve life for people with disabilities. People who recognize that individual participation can make a difference -- a big difference! How can you become involved? The opportunities are limitless, but they include community advocacy, volunteer work at ILCs, working on special events and financial support. By returning the card below, you will become involved in a movement to eliminate barriers to independence and increase options for people with disabilities. (Remove CFILC address from cutout card and replace with Please return to: Then leave enough room for each ILC to stamp their own return address.) (Back Cover) Empowerment Team Leaders: Building Community Networks CFILC has Empowerment Team Leaders in each of its member ILCs to help build support in the local community for independent living issues. While the ILC staff helps individual consumers understand the options and resources available to them, Empowerment Team Leaders help organize members of the community to actively address the policy change issues which will, in the long run, improve life for all people with disabilities. The Empowerment Team Leader should be your first contact for involvement in your community's effort to promote independent living for all. Teach people to fish and they can eat for a lifetime . . . What is Independent Living? Independent living is a philosophy and goal which states that people with disabilities should have the same civil rights, options and control over choices in their own lives as do people without disabilities. The consequences of this simple statement are many and those who embrace it are part of a movement which works to eliminate many of the attitudinal, physical and communications barriers faced by people with disabilities as they work towards independence and full integration into their communities. Independent living is about persons with disabilities managing their own affairs, participating in fulfilling day-to-day life in their communities, making decisions which lead to self-determination and away from dependence on others. The independent living movement's development has paralleled the civil rights movement, seeking to extend the rights gained for ethnic minorities to people with disabilities. Independent living is in direct contrast to the dependence created by institutionalization. In such settings, people with disabilities are segregated from the rest of the community, treated as sick or incapacitated, given little control over their day-to-day lives and dismissed as unproductive members of society. The independent living movement rejects each of these outdated, stereotypical notions for those with disabilities and seeks to change the community attitudes and beliefs which only perpetuate such dependence. In short, the independent living movement encourages those with disabilities to live in their communities like everyone else and works to accommodate, fully accept and integrate those with disabilities into the community just as they would those without disabilities. Independent Living Centers The "front lines" of California's independent living movement are the 28 private, nonprofit Independent Living Centers located throughout the state. Building upon the model created by the first center, opened in Berkeley in 1972, the centers work with people with disabilities to advance their personal independence and to help remove barriers to independent living found in local communities. Each center is its own independent, self-governing, non-profit unit which responds to the needs of the consumers and takes action to eliminate the barriers found in each region. What sets these centers apart from other service organizations is their commitment to involving people with all types of disabilities in making policy decisions and delivering services. In fact, more than 51 percent of the people serving on the ILC's Board of Directors are themselves living with disabilities and as well as a majority of the ILC staffs are people with disabilities. Among the services provided by ILC's are: * Information and referral * Individual and systems advocacy * Peer counseling and support * Accessible housing referral * Attendant and personal assistance referral * Independent living skills training The focus of an ILC's work is helping people help themselves. It is important to know what an ILC does not do. An ILC does not provide direct personal care; it helps an individual find their own in-home support services. An ILC does not provide medical treatments or medical devices; it helps a person with disabilities find appropriate treatments and equipment. An ILC does not provide economic assistance; it helps a person with disabilities obtain appropriate work or financial support. To locate the ILC nearest you, call the CFILC at (916) 325-1690, TDD (916) 325-1695 or view their web page at www.cfilc.org. The California Foundation for Independent Living Centers The California Foundation for Independent Living Centers (CFILC) is a professional association established to support the work of California's Independent Living Centers (ILC). CFILC has four major objectives: * Ensuring inclusion of all persons with disabilities * Creating a barrier free world * Providing the tools and information to assist ILCs to be more effective in their local communities * Creating through legislation and public policy the choices needed so people with disabilities can live independently. Initially established in 1976 to help change public policy at the state and federal level, CFILC works closely with the executive directors, board members, staff and volunteers of the ILCs. Each center helps fund the foundation's training, information sharing and support activities through annual membership fees. In 1997, CFILC received a three-year, $3 million systems change grant from federal Rehabilitation Act funds. The project is designed to assist local communities in creating better public policies and addressing the needs of persons with disabilities. In addition, the grant provides funding to improve communications by establishing a statewide electronic network and involving consumers in local and state policy development. As part of its mission, each year CFILC organizes two statewide meetings and two regional meetings where ILC leaders coordinate plans, develop strategies and recognize the efforts and progress people with disabilities are making in their own communities. For more information about CFILC, call (916) 325-1690, TDD (916) 325-1695 or view their web page at www.cfilc.org. California Department of Rehabilitation The California Department of Rehabilitation (DOR) is the "home-in-government" for state and federal programs providing advocacy and other services designed to enable people with disabilities to live independently. DOR supports independent living services and programs in the following ways: * Provides education, job training and placement assistance for people with disabilities * Awards and administers approximately $11 million in grants each year for the ILCs and other independent living service providers * Works with the State Independent Living Council to develop a three-year State Plan for independent living * Works with the ILCs, CFILC and SILC to establish independent living policy for state and federally-funded independent living programs * Is responsible for quality assurance of independent living services in California, conducting fiscal and program reviews of each ILC * Provides technical assistance and training to grantees in management, planning, service delivery, and center governance * Helps resolve disputes between individuals with disabilities and independent living and vocational programs through its Client Assistance Program For more information on Department of Rehabilitation programs, call (916) 445-8638 or view their web page at www.rehab.cahwnet.gov. For information about the Client Assistance Program, call (800) 952-5544 or TTY (800) 598-3273. State Independent Living Council The State Independent Living Council (SILC) is an 18-member body appointed by the Governor which helps maximize opportunities for people with disabilities through advocacy and planning. These roles were formalized in 1992 by amendments to the federal Rehabilitation Act. As a result , Governor Pete Wilson transformed the DOR's former Independent Living Advisory Council into an independent state agency in 1996. The SILC membership represents a cross-section of the independent living movement in California and, by law, a majority of the Council are people with disabilities. Members include: * ILC directors * Advocates for people with disabilities * Representatives from private businesses * Representatives from independent living service organizations * Non-voting representatives of the DOR, Department of Social Services, Department of Mental Health and the Department of Developmental Services In cooperation with the DOR, the SILC has prepared a needs assessment for people with disabilities in California and has developed a vision for meeting those needs. The assessment and a state plan for independent living are used to help remove the barriers to independence often encountered in California communities. The SILC also solicits public feedback on the delivery of independent living services and works with ILCs and other service providers to adapt their programs to changing needs. For more information regarding the SILC, including meeting schedules and agendas, visit its web page at www.calsilc.org, call (916) 445-0142 or use TTY/TTD at (916) 445-5627. Widely Encountered Barriers to Independence 1. Transportation which is reliable and accessible 2. Community-level public disability awareness education and training 3. Affordable and reliable in-home/personal assistance services, especially in rural regions 4. Information and referral services for diverse people with disabilities 5. Affordable and accessible housing, including retrofitting of existing homes 6. Counseling and advocacy in rural areas and for unserved and underserved groups 7. Systems advocacy in rural regions 8. Economic support which is accessible and encourages independence 9. Health and wellness awareness among ILCs that would better serve rural and inner-city regions 10. Education and training for unserved and underserved persons These prioritized barriers to independence encountered by most people living with disabilities and the side bar facts found throughout the booklet were taken from the 1995 California Statewide Independent Living Needs Assessment. For a complete copy of the document, call (916) 445-0142. This project was produced through cooperation between the California Foundation for Independent Living Centers and the State Independent Living Council. Special thanks are given to Gina McDonald, Mike Oxford, Burns Vick and June Isaacson Kailes whose previous works provided some of the background information used in its preparation. CALIFORNIA FOUNDATION FOR INDEPENDENT LIVING CENTERS ADA and ACCESS ISSUE BRIEF A Law Under Siege The year leading up to the July 26, 2000 10th anniversary of the Americans with Disabilities Act was perhaps the most trying for disability advocates since the law was signed, with the federal government and states poised to rollback the law's most important protections. In 1999, the Supreme Court severely restricted who could qualify as a person with a disability under the ADA, narrowing the number of people eligible for its protections. In early 2000, the Court appeared poised to declare Title II of the act unenforceable against states by agreeing to review the constitutionality of several lawsuits. In Congress, the so-called "ADA Notification Act" (H.R. 3590) was introduced to require a grace period before non-compliant businesses could be sued under Title III access provisions - a bill which would essentially give businesses an incentive to not provide access until sued. While the Clinton Administration publicly challenged the bill, public figures like Clint Eastwood lobbied for its passage. As the National Council on Disability noted in its comprehensive report, Promises to Keep: A Decade of Federal Enforcement of the ADA, media coverage of the law focused on litigation "rather than showing voluntary compliance or explaining the benefits of the law for people with disabilities." As a result of this negative coverage, most people on the streets continue to believe that the ADA is merely a catalyst for lawsuits. While enforcement of this seminal disability statute is largely a legal battle, public perception is what will ultimately decide the future of the law. Now more than ever, it is vital for disability advocates to draw attention to the important goals of the ADA and explain why the law is mutually beneficial for people with disabilities and the able-bodied. Equal Treatment: More than just changing attitudes All people are created equal, our Declaration of Independence tells us. Despite the language of equal treatment, however, the struggle for equality edges slowly along as a mixture of legislative, judicial and community-based reforms. For ethnic minorities and gays, the policy challenges to equal treatment focus on changing attitudes to eliminate prejudice. Laws today protect against employment discrimination on the basis of ethnicity. Gays cannot openly serve in the military, but they have gained some legal protections against discrimination in education and employment. Legal protections for these groups are essentially designed to open minds. For persons with disabilities, the civil rights struggle has an added layer of complexity. Teaching the public that persons with disabilities are equal is only one small step in the march toward equal treatment. Physical access is also essential. For a person with a physical limitation such as quadriplegia, it is not enough that an employer is right-minded on disability or is willing to hire him. For this person with a disability, the employer's commitment to provide access or "reasonable accommodation" is the tangible manifestation of his commitment to equality. Without access, whether it consists of curb-cuts provided by city government or a wheelchair-ramp at a private office building, promises of equality ring empty for people with disabilities. Nuts and Bolts: The Access Provisions of the ADA An overarching goal of the ADA is to provide physical access to everything from buildings and the workplace to bars, restaurants and parks. Just 20 years ago, most persons with significant mobility impairments couldn't leave their neighborhoods because of the lack of curb cuts. While today many cities and counties dedicate significant funding to surface-street access, many workplaces and leisure venues are off limits to persons with disabilities because of inaccessible bathrooms, narrow doorways and step entrances. To this day, many public schools are inaccessible and children with disabilities must struggle to get an education. Titles II and III of the ADA provide a workable blueprint for resolution of these challenges. Title II requires that public entities such as states and municipalities provide access to services, programs and facilities where such does not cause "undue hardship" (a determination based upon financial resources available to the public entity at issue). This section of the law also requires public entities to make changes or adjustments to jobs or work environments that allow qualified disabled applicants or employees to participate in the workforce. Examples of reasonable accommodations include modified work schedules, provision of readers or interpreters, and task restructuring. Title III, which affects private entities, requires "places of public accommodation" to provide full and equal enjoyment of the "goods, services, facilities, privileges or accommodations" they offer to the general public. There are 12 exhaustive categories for places of public accommodation that cover both landlords and their tenants: 1. Places of lodging (inns, hotels, motels) 2. Establishments serving food and drink (restaurants and bars) 3. Places of exhibition of entertainment (movie theatres) 4. Places of public gathering (convention centers) 5. Sales or rental establishments (grocery stores, hardware stores) 6. Service establishments (laundromats, dry-cleaners, etc.) 7. Public transportation terminals (not including airports) 8. Places of public display or collection (museums, galleries) 9. Places of recreation (parks, zoos) 10.Places of education (nursery schools, secondary, undergraduate and postgraduate) 11.Social services center establishments (day care centers, homeless shelters) 12.Places of exercise and recreation (health clubs, gyms) Contrary to public opinion, the ADA is flexible. As with public entities, private facilities are exempt from making modifications that pose an undue hardship. There are also exemptions for private clubs and religious organizations. One common criticism of the ADA is that it results in an added distraction for business owners, particularly small entrepreneurs. In fact, just the opposite is true. The intent of the ADA is to promote access which will not interfere with the operation of a given business or its mission. Indeed, businesses are not required to make modifications where they would "fundamentally alter the nature of the goods, services, facilities, or privileges" they provide. A Brighter Future: Fighting Isolation and Tapping the Global Marketplace The ADA has immediate clear-cut benefits for the able-bodied and those with disabilities that transcend the broader social goals of greater inclusion and diversity that the law is designed to facilitate. For the business community, promoting access and hiring persons with disabilities bolsters sales and marketing efforts. People with disabilities constitute an enormous untapped market, and like all consumers they desire basic things such as computers, Internet applications, transportation equipment, telecommunications devices, news and information, clothing and many other goods and services. Tapping the disability market makes sound economic sense. American Demographics recently reported that Consumers with Disabilities constitute the "Internet's New Niche Market," with more than 4 out of every ten people with disabilities spending time online. And according to 1995 census data persons with disabilities had a total annual discretionary income of $175 billion. For the persons with disabilities around the nation, increased participation in the marketplace will eliminate the devastating social isolation which they commonly face every day. Isolation is a significant byproduct of exclusion from the workplace and the economy. A 2000 Survey conducted by the National Organization on Disability and Aetna U.S. Healthcare showed that more people with disabilities (35%) than people without disabilities (21%) feel they are not-at-all involved in their communities. This number increases to 40% for those who have more severe disabilities. The benefits of greater market participation for the disability community exceed the ADA's stated goals such as greater employment, social participation and access. By playing a larger role in the economy as consumers they are bound to have more opportunities to get involved in their communities, network with others and start businesses of their own. Indeed, the more businesses focus on the disability market, the more they will depend on the creative input and professional advice of persons with disabilities to ensure they are successful. Ultimately, access and equal employment opportunity are basic civil rights. People with disabilities shouldn't have to struggle to get them. The able-bodied population should understand for a person with a disability, an inaccessible building is just like a "coloreds only" drinking fountain would be for an African-American. Lack of access affects all people with disabilities, not just the mobility-impaired. To cite just a few examples, inadequate interpreter services at many postsecondary institutions inhibit the education of the deaf, inaccessible web sites prevent communication among blind populations and inaccessible polling places prevent persons with all types of disabilities from participating in the electoral process. The Americans with Disabilities Act remains our strongest tool to eliminate these barriers to independence and full participation. Equal rights for persons with disabilities requires that the public have an accessible entrance, as well as an open mind. More effort must be made among disability advocates and public leaders to promote voluntary compliance and reduce the need for enforcement of this law through the court system. The ADA will never be perfect, and persons with disabilities will likely always bear the burden of advocating for access and equal opportunity in their local communities. The public should clearly understand, however, that the call for equal treatment will only grow louder as the number of persons with disabilities nationally continues to grow. There is no question whether the barriers to independence must be eliminated, the only question is when. INDEPENDENT LIVING: IT TAKES COMMUNITY! Historic Bill Will Empower the Disabled to Work THE SAN FRANCISCO CHRONICLE (c)San Francisco Chronicle Matt Taggart Friday, December 17, 1999 AMONG THE 17 MILLION working- age Americans with disabilities, 72 percent are jobless. While most of us view work as a means to securing health care, the opposite is true for people with disabilities, who commonly have medical needs not covered by HMOs and employer-provided insurance. Unless they are wealthy enough to cover expensive fee-for- service care (about $20,000 per year for personal caregiver assistance), federal insurance available under Medicaid remain their sole option for dealing with severe paralysis, cognitive disabilities, AIDS and other such conditions. Each year millions of people with disabilities are denied the opportunity to compete in our vibrant economy because eligibility for Medicaid requires poverty as a condition. Those who don't have jobs therefore don't look for them because work is too expensive. Those who have worked for years and paid into Social Security Disability Insurance (SSDI), face an even more tragic scenario. They have to spend away their assets to get below the poverty level (less than $650 per month in income with no more than $2,000 in assets) in order to qualify for Medicaid insurance benefits, which are better and more comprehensive than those available through Medicare. The programs, managed by the Health Care Financing Administration, are based on false and arcane assumptions about the ability of people with disabilities to participate and contribute to society. They assume that if you are well enough to work then you don't need special health insurance, and if you need special health insurance you should be on the dole. Like the broken social welfare system, which deterred work by penalizing those who sought jobs, the current SSI benefits program for people with disabilities has made federally-funded health insurance a virtual prison for the disabled. The next generation of professionals are languishing in back rooms and institutions because for them career growth comes at the cost of health security. Franklin D. Roosevelt, Ray Charles, and ``Dateline'' correspondent John Hockenberry have shown our nation that people with disabilities, in spite of their physical limits, can excel in nearly any job they choose. Yet our federal statutes remain ignorant to their potential. Medicaid still equates disability with helplessness and galvanizes dependency as a prerequisite for health insurance. Today, in 1999, we stand on the precipice of a new millennium filled with oppor tunity for the greatest people on Earth and optimism for our national development. Indifference should not characterize our federal benefits system. We all have friends or family who struggle with the challenges of a disability. As millions of Baby Boomers are reaching retirement age and the disabled population continues to grow, this issue affects all of us. Therefore, we should all applaud the Work Incentive Improvement Act of 1999, which President Clinton is expected to sign into law today. This bill will enable people with disabilities to maintain their benefits so they may obtain jobs and take control of their lives. The bill will eliminate the unfair requirement that people with disabilities remain poor to maintain health benefits. Raising the eligibility for Medicaid benefits to 450 percent of poverty, it will make sure that those people with disabilities who want to work can do so without risking their health. Matt Taggart is the Communications Director for the California Foundation for Independent Living Centers (CFILC) a nonprofit organization representing 24 disability advocacy centers around the state. You can visit their Web site at www.cfilc.org The San Francisco Chronicle Copyright 2000 Gov. Davis' Lawsuit Puts Equal Rights at Risk By Guy Wallace, Carol Bradley Monday, June 26, 2000 EDITORIAL OPEN FORUM Guy Wallace is a disability attorney with Schneider, McCormac and Wallace, based in San Francisco. Carol Bradley is with the Independent Living Resource Center of San Francisco. THE CALIFORNIA state budget surplus stands at an unprecedented $12.3 billion dollars, and legislators have just completed divvying it up as they passed a final budget. Yet, as most constituencies are being peppered with pork to make up for the lean years of the early '90s, the disability community is on the receiving end of a lawsuit that may jeopardize the most fundamental civil rights of people with disabilities. Gov. Gray Davis is challenging the constitutionality of the Americans With Disabilities Act, the seminal federal disability rights statute. The state of California has lost several cases in federal court that had challenged its failure to provide equal access to basic government services for the disabled. Most recently, the U.S. Court of Appeals in San Francisco held that California had violated Title II of the ADA by imposing a $6 surcharge for parking placards (Dare vs. State of California). The court ruled that the state could not assess a "surcharge" for equal access. Gov. Davis disagreed with the court's ruling. He appealed the decision to the U.S. Supreme Court, challenging the constitutionality of the ADA. His appeal takes the position that state governments can never be held liable in federal court for violating Title II of the ADA, which is the title that covers state and local governments and agencies. As a lawyer himself, Davis knows that the U.S. Supreme Court's recent "states rights" crusade may provide legal cover for California to avoid the costs of providing equal access. But as a matter of public policy, the governor's decision makes no sense. The ADA does no more than provide equal opportunity for people with disabilities. The legal protections provided by Title II, such as the right to access state government facilities and the right to equal employment opportunities in state jobs, are the very bedrock of the law. Government has always led the way on civil rights, whether the issue was desegregation or disability access. If state governments no longer have to provide a level playing field for people with disabilities, how likely is it that private businesses and local government will do so? The broader ramifications of Davis' lawsuit are frightening indeed. Title II of the ADA guarantees accessible public schools, state courts and public transportation. It also ensures access to the array of services provided to people with disabilities through state agencies such as the Department of Social Services. If those with disabilities are not able to access such facilities and services, they will be denied opportunities fundamental to their physical health and ability to earn a living. For example, a child who uses a wheelchair cannot go to school if there is no ramp into the school building. Obviously, if a child cannot even enter the school, it will be impossible for the child to attain the high school diploma needed to enter today's workforce. Without Title II, that child may end up on welfare. If Davis wins his lawsuit in the Supreme Court, he will put equal opportunity at risk. Davis should be a leader and stand up for the equal rights of the disabled by abandoning this ill-conceived lawsuit. Indeed, he promised that he would defend the ADA against all political and judicial challenges in the Democratic Party platform that he ran on in the last election. Many disabled Californians voted for Davis based on this promise. From Franklin D. Roosevelt to Bill Clinton, Democratic leaders have always been on the front lines defending disability rights. If Gov. Davis wants to rally the troops he marched into battle with in the 1998 elections, he should back into the right foxhole and fight the good fight. The ADA at 10: Incomplete and Misunderstood (c) Sacramento Business Journal Sac Business Journal, By Brenda Premo With employment among persons with disabilities lower than when the ADA was passed in 1990, significant ongoing problems with disabled access to public accommodation and housing, and a stream of reports of nursing home abuse at federally-funded facilities, the question emerges: has the Americans with Disabilities Act really helped the disabled? First, a look at what the ADA is all about. The landmark civil rights statute provides protections for persons with disabilities akin to those established by the federal government for women and minorities. Designed to open up all aspects of life to persons with disabilities when it was signed 10 years ago on July 26, 1990, the ADA centers primarily upon two issues: access and employment opportunity. The law provides that all public and private entities must provide access for persons with disabilities to services and facilities when such is "readily achievable." This deals with everything from workplace modification, handicapped parking, curb-cuts and access to public education. Indeed, without curb cuts, to take an example, a person in a wheelchair can't even cross the street safely, let alone get to work. The law also protects against employment discrimination. Simply put, employers have to give equal opportunity to qualified individuals with disabilities unless their employment, or the modifications to facilitate it, would pose an "undue hardship" to their business. The financial picture of the employer and relative expense of modifications are at the center of this determination. The ADA is an enabling statute for Americans with disabilities, offering carefully-crafted comprehensive protections unparalleled at the state level. Unfortunately, the statute has not ushered in an era of equality for the disabled. With the exception of high-profile few like Janet Reno, persons with disabilities haven't achieved the American Dream of self-sufficiency. 29 percent employment: Employment rates remain discouraging at around 29%. Until last year's passage of the Work Incentives Act (HR 1180), those with disabilities had to forego their vital SSI-funded health benefits if they wanted to work, risking their health in the process. Of the 121 visually impaired persons who sought jobs with assistance from the Oakland district of the California Department of Rehabilitation last year, only 16 candidates found jobs despite their degrees and broad work experience. Access remains abysmal, particularly to housing. In 1998, HUD reported that 5.3 million households were spending more than half their income for substandard housing; persons with disabilities comprised one-fifth of this group. The lack of affordable and accessible housing facing the disability community makes the Bay Area like a boundless pioneer-era frontier. The biggest problem with the ADA, however, is one of public perception. Many believe the ADA is just a catalyst for litigation, a common belief that has intensified legislative and judicial challenges to the law. None other than Clint Eastwood recently joined the reform chorus, traveling to Washington to decry frivolous litigation over his inaccessible business. Yet, like many recalcitrant businesses have in ripping the ADA, Mr. Eastwood conveniently covered up the fact that he chose to fight the access provisions for three years, ignoring multiple requests by would-be patrons to make his business accessible. Regrettably, the public only understands the law through the lens of litigation. The lack of public oversight and tracking of access or employment opportunity among America's disabled population means that the media covers the ADA on a piecemeal basis: lawsuit by lawsuit. It isn't shocking, therefore, that reporters themselves eventually succumb to the view that the law just encourages lawsuits. Predictably, many people's perception of the disability rights movement is very negative. Employers subconsciously associate people with disabilities with lawsuits and end up afraid. Afraid to hire us and afraid to associate with us. We need better oversight: The ADA experiment tells us that there is a missing piece: public oversight and assessment of ADA outcomes. More information is vital to the success of this law beyond the courtroom, particularly among the able-bodied business community and the media. State vocational rehabilitation agencies -- the de facto "disability agencies" who currently shoulder much of ADA promotion -- are in reality neither equipped nor empowered to detail compliance or report on progress. The public, and persons with disabilities in particular, need to know. We need more than a statute to look at, more than technical assistance documents from the U.S. Attorney General. We need regular information, such as the National Council on Disability's "Promises to Keep: A Decade of Federal Enforcement of the ADA" to detail what is happening with the law beyond the latest press clippings on lawsuits. With adequate follow up to this civil rights law, we will see more clearly the steps that must be taken to improve civil rights through access to housing, education, employment and transportation. If "We the People" truly want to share the American Dream with persons with disabilities, none of us should be excluded based on the singular characteristic of disability. Brenda Premo served as Director of the California Department of Rehabilitation in the Wilson Administration from 1996-1999. She helped draft the ADA as a member of the National Council on Disability from 1986-1990 and currently is Director of the Center for Disability Issues and the Health Professions, Western University of Health Science in Pomona. Los Angeles Times, May 29, 2000 Legislation Would Undermine the Rights of the Disabled to Have Full Access Justice: There are other ways to deal with frivolous lawsuits than to give businesses 90 days to comply after being sued. By MATT TAGGART (c) Los Angeles Times Earlier this year, two conservative members of Congress introduced a bill that would undermine enforcement of the accessibility provisions of the Americans with Disabilities Act. The bill, HR 3590, would require that people with disabilities bringing a civil suit over an inaccessible business allow a 90-day grace period, during which businesses will purportedly have a chance to rectify the problem. The bill's co-authors, Reps. Clay Shaw (R-Fla.) and Mark Foley (R-Fla.) argue that the measure will prevent frivolous lawsuits brought by lawyers seeking to enrich themselves instead of helping the disabled. By pulling the frivolous lawsuit card, as many other special interests so often do when faced with increased public accountability via civil liability, these lawmakers are really covering up the true purpose of the bill: It is intended to help businesses circumvent the ADA at the expense of the disabled population in the U.S. Generally misunderstood, the ADA was passed in 1990 in recognition of widespread discrimination against the disabled, with particular emphasis on the lack of physical access to public facilities. The Title III provisions, which affect private enterprises such as bars and retail stores, made it clear that all businesses that can do so without "undue hardship" must provide access to the disabled population. Failure to comply would expose them to civil liability. Unlike Title I, which requires people with disabilities to exhaust their "administrative remedies" before bringing a lawsuit, failure to satisfy Title III triggers virtually immediate liability. Congress created the provision knowing it would ensure that access became the rule, not the exception. From this point on, American businesses would be presumed to know their doors must be open to the disabled. If businesses didn't have to respond until challenged, they would wait until the first lawsuit was filed before doing anything. And, of course, only a small minority of people with disabilities would ever learn they had a right to access. Congress wisely applied the venerated legal principle of ignorance of the law not being an excuse to relieve the marginalized disability population of the burden of educating businesses on access laws. This proposed measure would remove the teeth from the ADA. It would place the yoke of yesterday on the weary shoulders of Americans with disabilities, forcing them to ask businesses politely to give them rights they now have. Cumbersome notification requirements only will further impede the national trend toward accessibility, encouraging businesses to drag their feet and dicker over the specifics of access. This is unnecessary. Businesses already have endless options available to them to help them with ADA compliance if they really want to be accessible. They can contact the U.S. Department of Justice, their state vocational rehabilitation agency or any number of local disability resources centers. It is not surprising that there are lawyers out there trying to make a buck on the ADA, just as there are unscrupulous lawyers filing meritless claims in other legal contexts. But the sheer volume of ADA claims doesn't prove anything. Lawyers may be "taking advantage" of people with disabilities in certain specific instances, and that is unfortunate. But lawyers also have done a great deal to help people with disabilities when nobody in Congress seemed to care much about them. Businesses know today that they must be accessible or face serious consequences. While a high volume of litigation may mean we need to explore new reforms or perhaps censure frivolous claims, this bill isn't the answer. Full participation in society is a right, not a privilege subject to 90-day notification. - - - Matt Taggart Is Communications Director for the California Foundation for Independent Living Centers, a Trade Association Representing 24 Disability Resource Centers in California Copyright 2000 Los Angeles Times ***FOR IMMEDIATE RELEASE*** CONTACT: Patricia Yeager Monday, April 16, 2001 Matt Taggart PR 02:01 (916) 325-1690 DISABILITY ADVOCATES APPLAUD DION ARONER'S INTRODUCTION OF THE WORKFORCE INCLUSION ACT AB 925 will help raise employment among people with disabilities SACRAMENTO ~ Today the California Foundation for Independent Living Centers (CFILC) and their network of thousands of disability advocates around the state voiced their support for Assemblywoman Dion Aroner's "Workforce Inclusion Act," Assembly Bill 925. Making important reforms to Medi-Cal and improving public information on benefits, the bill is expected to help raise employment among persons with disabilities, which currently hovers around 30%. "For years people with disabilities had to remain below the poverty line to be eligible for publicly-provided health benefits available through Medi-Cal. This meant spending away savings or remaining unemployed despite one's ability to work," said Patricia Yeager, Executive Director of CFILC. "Dion's important legislation, which raises the eligibility threshold for the Medi-Cal Buy-In to the full extent allowable under federal law, will give people with disabilities the health security they need to join the workforce." The bill would increase eligibility for Medi-Cal health insurance from 250% to 450% above the federal poverty level, the full permissible federal limit under the Work Incentives Act of 1999. It would not count the income of the beneficiary's spouse or parents in determining the net income for eligibility purposes and revises the limits on allowable savings to prevent people with disabilities from spending away their "safety net." "It is essential that public health benefits be structured so that people with disabilities don't have to choose between staying poor to receive coverage or getting a job at the cost of health care," said Yeager. "This measure will eliminate the Catch-22 that faces so many people with disabilities who want to work." AB 925 also creates a state-level Workforce Inclusion Council within the Health and Human Services Agency to target improved health care access through current public programs that support employment, and requires HHS to create a sustainable comprehensive strategy to bring persons with disabilities into the workforce. "Key benefit reforms are only helpful if the public knows about them. It would be useless to eliminate the poverty requirement if nobody at the local level is told of the new options available to them," said Yeager. "Ensuring accurate, timely benefits information is a critical element of any Medi-Cal policy change." Assemblywoman Dion Aroner crafted AB 925 over a 12-month fact finding period with the input and participation of people with disabilities and community based health care, policy and service organizations. The emerging market for people with disabilities By Patricia Yeager May 24, 1999 (c)1999 San Francisco Examiner IF YOU did nothing but read the newspapers, you'd probably end up believing that the business community and disability groups are archenemies. The maligned but largely misunderstood Americans with Disabilities Act of 1990, which required that businesses and public services be accessible to all people, has a virtual monopoly on media coverage of disability issues. It has become the prism through which disability is viewed. One day, there's a story about a callous restaurant owner who doesn't think his front door should have to be wheelchair accessible. The next day, there's an article about "frivolous" legal suits where a minor construction oversight leads to a seven-figure lawsuit filed by the disabled misanthrope. You end up with the implicit understanding that the relationship is about two irreconcilable sides. Indeed, the ADA was the catalyst that allowed people with disabilities to move around, to have access to transportation they had been deprived of, for jobs for which they were always well-qualified. Equality became the law. But ironically, what the public seems to have missed is that this law, rather than posing obstacles to businesses, creates opportunities. People with disabilities are an enormous untapped market for businesses. Microsoft, with its inaccessible computer programs, has traditionally had a reputation among people with disabilities that is even worse than among high-tech firms. On the other hand, Hewlett-Packard, Southwestern Bell Communications and Siemens are all making substantial profits. It's not because they produce goods made specifically for people with disabilities - although many other businesses do - but because their attention to people with disabilities gives their products an advantage in the marketplace. Guess what has occurred as a result of this competition? Microsoft is now consciously marketing to people with disabilities, presumably because it noticed that it was losing money by not responding to them as credible consumers. There are innumerable ways for businesses to show their interest in this market in addition to making their facilities and services accessible as required by law. We want them to earn our money by giving us more of a choice where to spend it. Let's face it: Businesses want to make money and increase demand for their product. For the disability community, that is a good thing. Including people with disabilities in the consumer base of any given company will not only help make this group a more integral part of the economy, it will empower them as consumers. And to those businesses that contend that people with disabilities have no money to spend . . . you are dead wrong. If there is one thing the wave of retiring baby boomers should tell you, it's that the elderly and people with disabilities constitute one of the largest emerging markets around. And it is a market far more lucrative than Southeast Asian real estate or Russian banks. Patricia Yeager, executive director of California Foundation for Independent Living Centers in Sacramento, has been hearing impaired since the age of 2. The Web site: www.cfilc.org. (c)1999 San Francisco Examiner Request for Bid: Integrated Marketing and Public Relations Campaign For Statewide Non-profit Disability Advocacy Association January 19, 2001 REQUEST FOR BID: INTEGRATED MARKETING AND PUBLIC RELATIONS CAMPAIGN FOR STATEWIDE NON-PROFIT DISABILITY ADVOCACY ASSOCIATION The Assistive Technology Network ("AT Network") is a Sacramento-based, non-profit, statewide project managed by the California Foundation for Independent Living Centers (CFILC), a trade association representing 25 Independent Living Resource Centers throughout California. MISSION The AT Network's mission is to increase access among persons with disabilities to vital assistive technology as well as raise public awareness among core constituencies of the importance of technology in fostering independence among California's disabled population (this includes minority outreach and cultivating public opinion for future AT-related reforms). OVERVIEW Just as technology has led to increased productivity and enhanced organization among the able-bodied, we believe that it holds boundless potential for persons with disabilities not merely in terms of improving employment prospects, but also in terms of resolving the greatest current barriers to independence. Indeed, assistive technology provides comprehensive solutions to such top disability problems as: accessible housing and transportation, personal care assistance, educational opportunity at the primary and secondary level, lack of structural access and broader social segregation. FUNDING AND STAFF INFORMATION In 1993, the California Department of Rehabilitation ("DR") established the California Assistive Technology System ("CATS"). Funded by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research ("NIDDR"), CATS was created to inform Californians about assistive technology and services. In 1998, DR awarded CFILC a contract to create a statewide project to help address the growing need of assistive technology among people with disabilities. The Assistive Technology Act of 1998, DR's federal funding source, provides money to states for the creation of comprehensive consumer-oriented systems to provide access to and current information on assistive technology. At the state-level, the AT Network is responsible for carrying out the mandates of the Assistive Technology Act of 1998. In 1999, the state received over $1.3 million in funding for outreach and training, evaluation and education and to establish information and referral centers throughout California. Under legislative guidelines, the AT Network now coordinates the activities of a growing network of more than 38 information and referral specialists located in local independent living centers around the state. Here in Sacramento, AT Network staff, which is housed within CFILC offices, consists of: (1) an information and referral specialist who operates a 1-800 hotline, (2) a public policy director/public spokesperson who coordinates policy efforts at the state level, (3) an AT systems change coordinator who works closely with AT advocates to integrate information and referral statewide, and (4) CFILC's media relations director who has recently assumed responsibility for managing our public relations contracts. OVERVIEW OF PROJECT AT Network is seeking qualified consultants to develop and implement a comprehensive direct marketing, community relations and media relations strategy to both raise the profile of the AT Network to target constituencies and the general public, notify the public of the services we provide, and connect with consumers with disabilities who need AT products or information. A comprehensive public relations plan should focus primarily upon the following elements: Coalition Building and Strategic Partnerships - (A) Coalition building through mail and phone techniques to develop alliances with other national, state and local disability associations, health-related nonprofit groups, similarly-situated political interest groups, supportive public officials at the state and federal level, organizations and practitioners in the medical field and consumer organizations (e.g. patient groups) as well as development of comprehensive database indexing strategic alliances. (B) Work with AT Network resource coordinator Steve Tingus to cultivate formal partnerships and sponsorships and secure additional funding from corporate and private interests who have a stake in the fields of health and technology (e.g. Rite Aid, Kaiser, Microsoft or Sunrise Medical Equipment). Direct Marketing and Mailing Lists - Preparation of collateral materials for direct mail campaign and mailing of materials increase statewide attention to the AT Network among targets and inform consumers. PSAs - Preparation and placement of public service announcements. Minority Outreach - Strategic marketing to minority and underserved communities through non-traditional media (community and ethnic newspapers, free or low cost advertising in weekly and regional publications and "niche" radio or cable access interviews with AT Network Advocates or volunteers in the disability community). Media Relations - (Press Conferences and Press Releases): Quarterly press conferences with our new partners to highlight the activities of AT advocates and the latest achievements of the network. Regular press releases that take advantage of triggering news events and public policy debates to draw attention to AT Network activities or spokespersons. Public Affairs - Participate on a limited basis in strategic planning and legislative outreach, working alongside our lobbyist on select AT-related bills or budget items. Funding from March 15 through June 30, 2001 is $15,000 with an additional $50,000-75,000 from July 1, 2001 to June 30, 2002. There will be an opportunity for contract renewal of up to four years contingent on results obtained. The AT Network's actual funding of public relations activities is assured through 2004. CFILC/AT Network would like to begin this contract by March 15, and request that proposals be submitted by 5pm on March 1. The top 3 bids will be selected for interviews. QUALIFICATIONS AND SELECTION PROCESS The CFILC Executive Director and Communications Director will make the selection of the consultant based on demonstration of the following. 1) Successful development of comprehensive image building campaigns with direct marketing and public relations components. 2) Experience launching/branding public relations campaign for non-profit organizations dealing in health or disability issues. 3) Ability to build coalitions from the ground up and build indexed databases. 4) Capitol presence and success in steering legislation and influencing legislators and decision-makers - particularly likely targets on disability issues. 5) Familiarity with or ability to understand complex disability-related issues such as: adaptive technology, ADA, social security, Medicare/MediCaid, personal attendant care and housing. 6) Strong writing and media relations background and familiarity with ethnic, community and grassroots media outlets. Demonstrated ability to place feature articles, generate editorial support and publish opinion-editorials. 7) Experience organizing special events and press conferences. Demonstrable and verifiable experience will be determined by submitted evidence of: 1) relevant consulting experience 2) references for completed projects 3) sample media/PR plan (prepared for another unidentified client) with examples of collateral materials 4) 2-3 page description of your agency's anticipated activities on behalf of CFILC, distribution of labor and expected cost breakdown Please include all elements above so that your bid is considered responsive. Actual bid for consulting services should include the number of hours, hourly rate, principle staff involved and individual qualifications. Travel costs should be included; however, production costs (printing, kit production etc.) should not be included in the bid. SUBMITTAL OF RESPONSE AND TIMELINE CFILC will accept written or faxed responses to this Request for Bid until 5:00 PM on March 1, 2001. Responses received after that time may not be considered. Contract will be awarded by March 15, 2001. Submit bid response to: CFILC Attn: Patricia Yeager 660 J Street, Suite 270 Sacramento, CA 95814 (916) 325-1690 (916) 325-1699 fax Sample Materials and Tips from New York Statewide Independent Living Council MEDIA IMPACT: CIL COMMUNITY AWARENESS SURVEY Process: You will need your local telephone directory. Randomly select a name listed under section "A" (ie, like Adams). Follow the script listed below to make your introduction, then use the survey questions to facilitate your brief conversation. Try to have them successfully respond to the survey. If you are successful, move on to the next letter in the alphabet. Repeat the process until you have twenty-six completed surveys. If you are not successful, then continue to randomly select names until you obtain a completed survey for each letter of the alphabet. DO NOT CALL NAMES THAT YOU KNOW ARE CURRENT CONSUMERS OF YOUR CENTER! We are trying to assess the general public's awareness of CILs. Please mail your completed surveys back to: NYSILC, 111 Washington Avenue, Suite 101, Albany, NY 12210. Introduction: Hi! My name is . I am conducting a brief survey on behalf of the New York State Independent Living Council. I was wondering: 1) Have you ever heard about Independent Living Centers, or Centers for Independent Living? Yes No IF THEIR ANSWER IS "NO", THEN GO TO QUESTION # 5 2) Do you know what services these centers provide? Yes No 3) Do you know where your nearest center is located? Yes No 4) How did you first find out about these centers? Personal Experience Television Family Member Internet Friend Newspaper Other Agency Radio Brochure Other: Newsletter 5) What forms of media do you use, or recognize, most often? Television Internet Radio Newspaper Billboards Transit/Bus Billboards Other: 6) Do you, or someone in your immediate family, have a disability? Yes No Conclusion: Thank you very much for your time. Have a great day. Name: Tele. #: Date: CIL COMMUNITY AWARENESS SURVEY RESULTS In an attempt to assess the potential need to increase public awareness, NYSILC asked five centers to conduct a preliminary survey in their areas. The centers were located in Buffalo, Cortland, Harlem, Troy, and White Plains. The responses were tabulated and produced the following results: Q#1: Have you ever heard about Independent Living Centers or Centers for Independent Living? o 18% Yes (If response is "Yes," answer questions 2-6). o 82% No (If response is "No," answer questions 5-6). Q#2: Do you know what services these centers provide? o Out of the 18% cited above: o 63% Yes. o 37% No. Q#3: Do you know where the nearest center is located? o Out of the 18% cited above: o 26% Yes. o 74% No. Q#4: How did you first find out about these centers? o Out of the 18% cited above: o 78% Personal, Family, Friend, Agency. o 22% Media. Q#5: What forms of media do you use or recognize most often? o 47% Television. o 28% Newspaper. o 17% Radio. o 6% Internet. o 2% Billboards. Q#6: Do you or someone in your immediate family have a disability? o 16% Yes. o 84% No. Correlation (Q#1 & Q#6): o No CIL, No PWD 73%. o No CIL, Yes PWD 11%. o Yes CIL, No PWD 10%. o Yes CIL, Yes PWD 6%. MEDIA PRODUCT QUESTIONNAIRE 1. Who is the target audience? a. General public. b. Persons with disabilities. c. Significant others related to persons with disabilities. d. Persons who have NO identification with the needs or issues faced by people with disabilities. e. Legislators and/or policy makers. f. Corporations. g. Other??? 2. What is the purpose of the campaign? a. Identity/name recognition. b. Success/impact of CIL model. c. Issue-specific (i.e., ADA, funding increase, etc.). d. Anti-stigma or discrimination. e. Other??? 3. What outcomes do we want to achieve? (Open-ended) 4. What kind of major themes and/or concepts do we want to reinforce? (Open-ended) 5. How should we resolve the Federal/State conflict with our name and network (i.e., CILs, ILCs, satellite offices)? (Open-ended) 6. Will you commit to distributing this product in your area? a. Yes. b. No. c. Other. 7. What factors will prevent you from distributing this product? (Open-ended) 8. What additional knowledge and/or resources will enhance the implementation of this media campaign? (Open-ended) 9. Will you commit to conducting both the pre and post surveys? a. Yes. b. No. c. Other. 10. Other comments? (Open-ended) MEDIA IMPACT: A Partnership Between SILCs & CILs o INTRODUCTION: o Introduce self and affiliation. o Acknowledge variety and interest of competing breakout sessions. Ask that people be courteous if they need to leave the room. o APPROPRIATE ROLE FOR SILCs: o In order to describe our media efforts, I first need to take some time and explain HOW we found the task of "increasing public awareness" an appropriate role for our SILC. * First, in March of 1999, NYSILC held a retreat to examine its mission, vision, and goals. * Our new mission looked to clarify who was our primary customer..."to support the Centers for Independent Living (CILs) and increase resources for the independence of people with disabilities." * Our new vision embraced a more global theme..."to achieve a world where people with disabilities experience equal rights in all aspects of society." * Last, our four new goals were identified as follows: o To increase funding and resources. o To increase public awareness. o To provide technical assistance and training. o To develop a public policy agenda that results in systemic change. * Second, in an attempt to assess the potential need to increase public awareness, the New York SILC asked five centers to conduct a preliminary survey in their area. The centers were located in Buffalo, Cortland, Harlem, Troy, and White Plains. * Briefly review the survey instrument (i.e., item in workshop packet). * Briefly review survey results (i.e., see attachment). o Now that public awareness was a prioritized goal, we had to find a way to move things forward. Previously, NYSILCs executive committee had met and identified some public relations strategies, but nothing happened beyond the plan being developed on paper. o Plan A looked to accomplish three primary objectives: * To expand upon the production and distribution of the existing "Points of View" cable access television show. * To develop a statewide PSA campaign. * To utilize targeted media services for strategic issues. o Plan B looked to take the same themes and issues and promote them through the distribution of secondary products: * Highway Billboards. * Amtrak Billboards. * Transit/Bus Advertisements. * Novelties: Posters, T-Shirts, Coffee Mugs, Pens, and Pins). o AS A RESULT, I will take the primary objectives from Plan A and describe the "who, what, where, when, why, and how" of each one. o Where the who represents the participants, o What...the products, o Where...production and distribution, o When...frequency, o Why...evaluation of impact, o And how...the cost. o "POINTS OF VIEW": o Show a ten-minute segment of "Points of View". o Define the following aspects of the show: * Who: developed by the Independent Living Project of Western New York in Buffalo, it includes the participation and sponsorship of the New York SILC and the centers located in Niagara Falls, Corning, and Ithaca. In the year 2000, additional partners include the Watertown, Massena, and Yonkers centers. Albany and Plattsburgh are also close to a decision regarding their involvement. * What: "Points of View" is a half-hour cable access television show that utilizes a panel discussion format to address issues significant to individuals with disabilities. Topics have ranged from the ADA and IDEA to accessible parking and mental health stigma. * Where: participants arrive at the Buffalo center at 11:00 AM on the day of the filming to review a list of potential questions. Informal discussions help to identify priority questions and areas of diverse discussion. The group eats lunch, then heads over to the studio where the show is produced. Within thirty days, each sponsor receives a VHS and 3/4" format copy of the show for distribution to their local media markets. * When: "Points of View" is produced four times a year at the Creative Concepts studio in Buffalo. The new sponsors will enable the group to produce the show six times a year in the year 2000. * Why: there is a need to raise specific issues important to people with disabilities. In order to evaluate the impact of the show, we will conduct a new pre-survey in January of 2000. It will incorporate a set of questions for "Points of View". A post-survey will be conducted in January of 2001. NYSILC will also ask centers to utilize a tracking system to document impact in their local media markets to the best of their ability. The collective information will then be assigned values based on listed advertising rates. NOTE: we are thinking about changing the format of the show to have it one-third news, one-third features on centers or individuals, and one-third hot topic panel discussion. * How: "Points of View" costs $1,450 per show to produce, or $5,800 per year. It is paid for through sponsorships provided by the participants. Buffalo fronts $2,000 and acts as the host, then NYSILC, Niagara Falls, Corning, and Ithaca contributes $1,000 each. This year, a series of six shows will cost $8,700. The additional $2,900 will be offset by the $3,000 received from the new participants. o STATEWIDE PSA CAMAPIGN: o Show a two-minute segment of the PSA campaign. o Define the following aspects of the campaign: * Who: NYSILC contracted with Pepe Productions to produce a statewide PSA campaign for the network of thirty-five centers and nine satellite offices. * What: NYSILC utilized a set of questions to help obtain feedback about the purpose and content of the campaign (i.e., item in workshop packet). As a result, the statewide PSA campaign will include a media kit developed and delivered to each CIL and satellite that contains the following items: * (3) 30 second television PSAs, individually tagged with contact information for each site, in both 3/4" studio and VHS formats. * (3) 60 second radio PSAs, individually tagged with contact information for each site, in a CD format. * (3) newspaper PSAs, individually tagged with contact information for each site, in a CD format. * a brief "how to" guide that will assist CILs to effectively approach local media with their product. * a media listing of New York State newspapers, radio and television stations by county. * Where: the campaign was filmed in the capital district area to minimize production and travel costs. The PSA campaign will be distributed in media markets across the state by the network of centers. * When: the media kits will be handed out and reviewed at the end of January 2000. They will be distributed to local media markets throughout the year. * Why: the results of the preliminary survey demonstrate a great need for name identification. The entire network will conduct the pre-survey in January of 2000. A post-survey will be conducted in January of 2001 to evaluate the impact of the PSA campaign. NYSILC will also ask centers to utilize a tracking system to document impact in their local media markets to the best of their ability. The collective information will then be assigned values based on listed advertising rates. * How: NYSILC subsidized the cost of $8,800 for the statewide PSA campaign. This amount was not originally in the budget. The communications and training position became vacant during the year. Instead of filling the full-time position, NYSILC outsourced the primary functions of the job to three individuals on a part-time contractual basis. NYSILC realized a net savings of $11,000. o TARGETED MEDIA SERVICES: o Show a two-minute segment of the television news coverage for the Election Day visits to inaccessible polling places. o Define the following aspects of the event: * Who: NYS Assistant Attorney Generals visited inaccessible polling places with center staff at eighteen different locations throughout the state on Election Day. Locations included: Albany, Binghamton, Buffalo, Corning, Glens Falls, Harlem, Hudson, Kingston, Manhattan, Newburgh, Plattsburgh, Rochester, Saratoga Springs, Suffolk, Troy, Utica, Watertown, and White Plains. * What: NYSILC engaged Howard Schaffer Marketing (HSM) to provide targeted media services to promote coverage of the event across the state. HSM met with NYSILC to establish a budget/contract for the service along with a set of priorities. HSM then coordinated efforts between the communications office of the NYS Attorney General and the participating centers. Last, HSM developed a news release for the event and promoted it to media markets statewide. * Where: Out of the eighteen locations identified above, media coverage was generated in at least one market for all the sites. This was largely due to radio coverage, which picked up and aired a news story from The Associated Press produced by the NYS Attorney General's Communications Office and released the day before the event. A formal method was not utilized to track the radio coverage. However, every site reported that they could confirm airtime for the story on multiple stations. Television news coverage occurred at four locations on five different stations in Albany, Binghamton, Watertown, and Rochester (i.e., twice). Television coverage was tracked by a clipping service and responses back from the different locations. Newspaper coverage occurred at eight locations thirteen different times in Albany, Glens Falls, Hudson, Kingston (i.e., story and letter to the editor), Plattsburgh, Saratoga Springs (i.e., story, editorial, three letters to the editor), Troy, and Utica. Newspaper coverage was tracked by a clipping service and responses back from the different locations. Overall, eleven of the eighteen locations had the story hit two out of three media markets (i.e., 61%). Last, Albany was the only site to have radio, television, and newspaper coverage. * When: the media coverage appeared in various media markets the day before the event 11/01/99 through 11/26/99. It should be noted that radio coverage happened on 11/01/99, television coverage on 11/02/99, and newspaper coverage ranged from 11/01/99 through 11/26/99. * Why: As mentioned previously, there is a great need for both name recognition and to raise specific issues. Targeted media services can help to accomplish both items. In order to evaluate its impact, we will conduct a new pre-survey in January of 2000. The impact of targeted media services will be assessed through question # 4, which asks respondents HOW they found out about centers (i.e., more personal/agency referral, or via media). A post-survey will be conducted in January of 2001 to help evaluate the impact of targeted media services. NYSILC will also ask centers to utilize a tracking system to document impact in their local media markets to the best of their ability. The collective information will then be assigned values based on listed advertising rates. * How: NYSILC subsidized the cost of $1,616 (i.e., $1,400 plus $216 expenses) for the consultant to provide targeted media services. This amount was not originally in the budget. It was paid for through the net savings realized by outsourcing the primary duties of the former communications and training position. Howard Schaffer Marketing compiled a list of media market "hits" for the Election Day coverage at inaccessible polling places. NYSILC received approximately $18,492 in media coverage for their investment of $1,616. This represents an 11:1 return on the dollar. o CONCLUSION: o NYSILC is pleased with our media efforts to date. We have positioned ourselves to be able to evaluate the impact of our current strategies...and...look forward to our new role, as we seek "to increase public awareness" about the centers and independent living. May 31, 2001 For More Information Contact: Harvey Rosenthal, NYAPRS (518) 527-0564 Brad Williams, NYSILC (518) 424-8121 Michael Kink, Housing Works (518) 527-2787 State Disability Advocates to Hold Capitol Rally for Medicaid Buy-In June 5th at Noon. Speakers to Offer Stirring Testimony at 11:00 AM Press Conference. Over forty statewide groups representing people with disabilities will be holding a Press Conference on Tuesday, June 5, 2001, at 11:00 AM, in the LCA/Room 131 of the Legislative Office Building in Albany, New York. A slate of individuals will give an update on the status of a state Medicaid Buy-In program. Speakers will include several New Yorkers with disabilities talking about the how the various buy-in proposals will impact their lives. They will highlight the importance of five key provisions either reduced or left out of Governor Pataki's plan. Overall, the group will call upon the Senate to pass the Marchi bill, S. 1691, intact and ask the Governor to improve his proposal consistent with the provisions in the "Work and Wellness Act." The Assembly unanimously passed an enhanced "Work and Wellness Act" early in 2001. The expanded version allows individuals above 400% of the poverty level to participate if they pay the full premium. It also guarantees Medicaid eligibility for one year after termination. Governor Pataki announced his own proposal for a Medicaid Buy-In program during this year's State of the State address. The Governor's plan demonstrates his leadership on the issue, but reduces eligible income limits, lessens resource and asset limits, excludes a demonstration project for individuals with potentially disabling conditions like HIV infection or early-diagnosis multiple sclerosis, does not provide for Medicaid eligibility for one year after termination, and leaves out the establishment of a consumer-controlled, cross-disability advisory board to guide the program. Republican Senator John Marchi has sponsored a bill in the Senate that is the same in content as the one approved by the Assembly. Advocates are calling upon the Senate to pass the Marchi bill, S. 1691, intact and encourage the Governor to improve his proposal consistent with the provisions in the "Work and Wellness Act." Join us for a Medicaid Buy-In Rally on June 5th at 12:00 Noon on the East steps of the Capitol that will feature hundreds of disability advocates from across the state. Organizers will connect press representatives with members from their community, including the New York City, Long Island, and Hudson Valley regions. The disability community is committed to a Medicaid Buy-In program that encourages and includes people with employable skills for career-oriented jobs as well as those ready for entry-level work. In the event of inclement weather, the rally will be held in the "well" of the Legislative Office Building. A broad range of statewide networks, advocacy and consumer organizations support a Medicaid Buy-In in New York State: ADAPT of New York State, Association for Community Living, Association of Independent Living Centers in New York State, Brain Injury Association of New York State, Center for Human Resources, Center for Disability Advocates Rights, Cerebral Palsy Association of New York State, Coalition for the Homeless, Coalition of Voluntary Agencies in Mental Health, Coalition On Independent Living, Consumer Directed Personal Assistance Association of New York State, Corporation for Supported Housing, Council for Community Behavioral Healthcare, Disabled in Action of Metropolitan New York, Eastern Paralyzed Veterans Association, Epilepsy Coalition of New York State, Families Together, FEDCAP, Federation of Jewish Philanthropies UJA, Gay Men's Health Crisis, Housing Works, Independence Care Systems, Legal Aid Society, Mental Health Association in New York State, Mental Health Empowerment Project, Multiple Sclerosis Society, National Alliance for the Mentally Ill-New York State, National Association of Social Workers - NYS Chapter, New York Association of Psychiatric Rehabilitation Services, New York Legal Assistants Group, New York State Americans with Disabilities Act Committee, New York State Association of Agencies, New York State Association of Community Residential Agencies, New York State Catholic Conference, New York State Council for Behavioral Health Care, New York State Independent Living Council, New York State Rehabilitation Association, New York Works, New York Works Exchange, Self-Advocacy Association of New York State, and State Communities Aid Association. PRESS RELEASE June 5, 2001 State Disability Advocates Seek Closure on Medicaid Buy-In Representatives from over forty statewide groups held a press conference in Albany to seek closure on a Medicaid Buy-In program for New Yorkers with disabilities by the end of this legislative session. Many of the speakers were people with disabilities who did not want to be left out of a buy-in program. Jim Leftwich, who recently completed a Master's Degree in Library Science, commented, "Without a Medicaid Buy-In, reentering the workforce would pose serious risk. In frustration with the slow progress in the New York State Senate and the Governor's inadequate version of the bill, I am now looking to relocate to a progressive state like Connecticut." Each speaker also highlighted the importance of five key provisions either reduced or left out of Governor Pataki's plan. Michael Hellman of Westchester County stated, "I am an attorney employed as a part-time advocate. The Governor's plan will close me out of most upper level attorney jobs. I need the 'Work and Wellness Act' to achieve my career goal, especially given the higher cost of living in the New York City area." The overall message was clear. "We need the Senate to pass the Marchi bill, S. 1691, intact and encourage the Governor to improve his proposal consistent with the provisions in the Work and Wellness Act," remarked Brad Williams of NYSILC. "Expanding participation to individuals above 250% of the federal poverty level is not a costly proposition," said Harvey Rosenthal of NYAPRS. "These individuals contribute a greater amount of new state tax revenue, are more likely to have employer-sponsored health insurance to act as a wrap around to the Medicaid, and pay most if not all of the full premium cost." Michael Kink of Housing Works agreed, adding, "The State of California passed a buy-in program last year similar to what the Governor has proposed. Less than 300 people have enrolled to date! People see its limitations and assess it to be too much of a risk." Four hundred advocates from across the state rallied after the press conference on the East steps of the Capitol. Several people gave passionate speeches in support of an expanded buy-in. On numerous occasions, the group broke into a chant of "Work and Wellness now!" Eventually, they disbanded to make visits to State Senators. As promised, the Assembly unanimously passed an enhanced "Work and Wellness Act" early in 2001. The expanded version allows individuals above 400% of the poverty level to participate if they pay the full premium. It also guarantees Medicaid eligibility for one year after involuntary termination. Governor Pataki announced his own proposal for a Medicaid Buy-In program during this year's State of the State address. The Governor's plan demonstrates his leadership on the issue, but reduces eligible income limits, lessens resource and asset limits, excludes a demonstration project for individuals with potentially disabling conditions like HIV infection or early-diagnosis multiple sclerosis, does not provide for Medicaid eligibility for one year after involuntary termination, and leaves out the establishment of a consumer-controlled, cross-disability advisory board to guide the program. Republican Senator John Marchi has sponsored a bill in the Senate that is the same in content as the one approved by the Assembly. For More Information Contact: Harvey Rosenthal, NYAPRS (518) 527-0564, Brad Williams, NYSILC (518) 424-8121, or Michael Kink, Housing Works (518) 527-2787. MEDICAID BUY-IN PRESS CONFERENCE June 5, 2001 For more information contact: 11:00 AM Harvey Rosenthal, NYAPRS 518 527-0564 LOB, LCA Room Brad Williams, NYSILC 518 424-8121 Albany, NY Michael Kink, Housing Works 518 527-2787 Agenda 1. Welcome/Review of Agenda. a. Michael Kink, Housing Works. 2. Medicaid Buy-In Update. a. Harvey Rosenthal, NYAPRS. 3. Income and Assets. a. Michael Hellmann. b. Jim Leftwich. 4. Demonstration Project. a. Susan M. Dooha, JD, GMHC. 5. One-Year Guaranteed Eligibility. a. Sue Meiniker, CDCI. 6. Advisory Board. a. Maria Dibble, AILCNY. 7. Questions and Answers. A broad range of statewide networks, advocacy and consumer organizations support a Medicaid Buy-In in New York State: ADAPT of New York State, Association for Community Living, Association of Independent Living Centers in New York State, Brain Injury Association of New York State, Center for Human Resources, Center for Disability Advocates Rights, Cerebral Palsy Association of New York State, Coalition for the Homeless, Coalition of Voluntary Agencies in Mental Health, Coalition On Independent Living, Consumer Directed Personal Assistance Association of New York State, Corporation for Supported Housing, Council for Community Behavioral Healthcare, Disabled in Action of Metropolitan New York, Eastern Paralyzed Veterans Association, Epilepsy Coalition of New York State, Families Together, FEDCAP, Federation of Jewish Philanthropies UJA, Gay Men's Health Crisis, Housing Works, Independence Care Systems, Legal Aid Society, Mental Health Association in New York State, Mental Health Empowerment Project, Multiple Sclerosis Society, National Alliance for the Mentally Ill-New York State, National Association of Social Workers - NYS Chapter, New York Association of Psychiatric Rehabilitation Services, New York Legal Assistants Group, New York State Americans with Disabilities Act Committee, New York State Association of Agencies, New York State Association of Community Residential Agencies, New York State Catholic Conference, New York State Council for Behavioral Health Care, New York State Independent Living Council, New York State Rehabilitation Association, New York Works, New York Works Exchange, Self-Advocacy Association of New York State, and State Communities Aid Association. WE NEED A MEDICAID BUY-IN THAT DOESN'T EXCLUDE HARD-WORKING NEW YORKERS WITH DISABILITIES New York needs a Medicaid buy-in that allows disabled workers to establish careers, marry and save for the future. We must build upon the Governor's proposal. We urge Senators to support the expanded program passed by the Assembly and proposed by Senator Marchi in S.1691 that will: * Allow individuals with income up to $70,000 (couples to $94,000) to buy health coverage by paying a sliding scale premium and allow workers with higher income to purchase coverage at full premium -- the Governor's proposal would exclude anyone who makes more than $44,000 per year (couples to $58,000). Currently, people with disabilities cannot find the broader coverage they need in the regular insurance market; programs that include benefits like personal care attendants or certain medications are either unavailable or cost-prohibitive. We seek an inclusive Medicaid Buy-In program similar to the Governor's very popular Child Health Plus program that is available to eligible participants irrespective of income. Why leave out very talented individuals who are capable of earning more and paying higher premiums and taxes? * Raise the allowable resource limits from $10,000 to $40,000 in assets. New York currently requires no such limitation on assets in the Child Health Plus or EPIC programs. We are providing fair and open access to health care needed by our children, their families, and our seniors. Let's not leave out New Yorker's with disabilities! People with disabilities need to save for their futures as full participants in society as taxpaying homeowners. * Provide for a demonstration project for individuals with potentially disabling conditions like HIV infection or early-diagnosis multiple sclerosis. Current stringent disability definitions and review processes exclude individuals who are very likely to experience disabilities that increase in severity. Let's keep people with disabilities in the workforce with health care to support their ability to stay in the mainstream. Why should individuals with disabilities wait until they're fully disabled to work? * Implement a sliding scale premium structure, guaranteeing Medicaid eligibility for one year from termination. Let's provide a proper safety net of support for those willing to assume the risks of re-entering the workforce! * Create an advisory board that provides cross-disability consumer representation and control. We must allow people with disabilities, who have historically been subject to policies without their input, to have their views included in this program. MEDIA COVERAGE OF JUNE 5, 2001 MEDICAID BUY-IN PRESS CONFERENCE AND RALLY [Several hundred advocates pack the front steps of the Capitol for the rally.] TELEVISION Channel 6 - CBS Affiliate (20 Seconds) June 5, 2001 5:00 PM Marybeth Wanger [Background video shows hundreds of people with disabilities carrying signs like "Give Me a Working Chance" and "We Want Jobs!" The group brakes into a chant of "Work and Wellness NOW!"] About 200 disabled New Yorkers were at the State Capitol today asking lawmakers to help improve their benefits. Advocates want an expansion of the Medicaid Buy-In program by the end of the legislative session. They want to be able to keep their jobs while at the same time keep their Medicaid. ------------------------------------------------------------------------------------------------------------ Channel 4 - New York Week in Review (2 Minutes) June 8, 2001 7:30 PM Michael Carrease (Moderator), Joe Mahoney (New York Daily News), Yancey Roy (Gannett News Service), Karen DeWitt (New York State Public Radio). [Discussion panel format. After talking about the New York State budget stalemate, the first issue that the group addressed was the Medicaid Buy-In program.] Carrease: Karen, one of the things that's not getting done because of the budget tie up is the so-called "Medicaid Buy-In." There was a protest again about that this week. DeWitt: Well, that's right. Governor Pataki and the legislature have agreed in principle to allow disabled people to go to work and to keep their Medicaid insurance through a sliding scale. They would pay for it. And there are a lot of disabled people who say..."we want to go to work...we'd like to have jobs...we're ready to work now...why can't you do this bill?" But because it does cost some money to the state, it's tied to the budget; they're not doing it. We saw about 300 people who came up in wheelchairs, with seeing-eye dogs, and protested. And they say they're going to keep coming back because they don't want to be lost in this crazy budget morass. Carrease: Now the Governor held open the possibility that the next time they negotiate the extender to the budget, which is next week, if they do have agreement on new spending programs...the Medicaid Buy-In program would be one example...there are centers for excellence in technology that the Governor really wants to see...that he's willing to put those into the extenders. Roy: Medicaid Buy-In is only one of several programs that the sides say...oh, we agree, we have to do something, and we will do something, whenever we get a budget. There's the reform of drug sentencing laws, which is tied into spending on treatment and prisons and what-have-you, the Republicans and Democrats say we're ready to do something, but we have to wait for the state budget... DeWitt: ...And the state superfund wants money... Roy:...the state superfund, which is a toxic waste clean up program, is out of money. They all say they want to replenish it. It's on hold. DeWitt: But if the Governor did add new programs into the extenders, it would kind of be an unusual way of doing the budget. It would be doing it piecemeal. Senator Joe Bruno talked about...well, maybe we could do school aid in one of these extenders. But if they do that, it seems like they might as well do the budget. Some Assembly Democrats are resisting. They're kind of saying all or nothing. We don't want to do this piecemeal approach. Carrease: That's the Assembly's main leverage is an all or nothing sort of approach. Their power is to say "no" to a budget. And once they start saying "yes," it diminishes. DeWitt: Nobody wants to say, "yes" right now. ------------------------------------------------------------------------------------------------------------ Channel 4 - Inside Albany (2 minutes) June 11, 2001 6:00 AM David Hepp and Lise Bang-Jensen. Three-Month Budget Extender? [Photo of Governor Pataki.] [Video of several hundred people with disabilities chanting "We want jobs NOW" at the front steps of the Capitol.] These are New Yorkers with disabilities who want to work but can't afford to. The budget impasse has put their future on hold. [Video of Deval Whitley speaking to the rally participants.] Whitley: "We just want a chance to prove that we can be productive Americans. We don't want to leech off the system. We want to contribute. We want to give back everything that we have been given." Thanks to Medicaid, disabled New Yorkers can live more independent lives. However, Medicaid can trap them in low-paying jobs. [Video of Michael Hellmann being interviewed.] Hellmann: "I am presently a lawyer. I am licensed to practice in New York State and a couple of other states. And in the middle of law school, I became disabled by a sudden stroke, which was just a fluky thing that happened. Something I had been born with." [Video of Mike Hellmann speaking at the rally.] Michael Hellmann, a Bronx resident, who uses a wheelchair, doesn't practice law full-time because he says no job would provide the comprehensive health care he gets through Medicaid. [Video of Michael Hellmann being interviewed.] Hellmann: "I need to keep my earnings down to...it's roughly $500 to $600 per month to stay on Medicaid." [Video of Tony Phillips speaking at the rally.] The solution to the dilemma of many disabled New Yorkers is to allow them to stay on Medicaid when they get jobs. They would pay premiums based on their salaries. [Video of Michael Hellmann being interviewed.] Hellmann: "And I would pay a monthly amount in order to retain that Medicaid. It wouldn't be a freebee for me." Jensen: "Because you could presumably earn more as a lawyer?" Hellmann: That's correct. And there's a lot of work out there in disability rights that requires lawyers." Jensen: "And you can't do it?" Hellmann: "I just have to hold back as to the amount of money that I can earn." [Wide-angle video of the several hundred advocates rallying at the front steps of the Capitol.] The Medicaid Buy-In program has been embraced by Governor Pataki and legislative leaders, but they can't agree on the details. Thus, it remains in budget limbo. ------------------------------------------------------------------------------------------------------------ RADIO WAMC - FM - NPR Affiliate (60 Seconds) June 6, 2001 7:00 AM Karen DeWitt Several hundred people with disabilities rallied at the State Capitol yesterday to demand passage of a health insurance bill that they say will allow them to go to work. WAMC's Capitol Correspondent Karen DeWitt. [Background audio captures group chanting "Work and Wellness NOW" and they clap their hands in unison.] Disabled people are demanding passage of a bill that would allow them to keep their Medicaid health insurance coverage when they go to work. They would pay for the premiums themselves out of their wages on a sliding scale. Sue Meineker (i.e., person speaking is actually Maria Dibble) a blind woman who runs an independent living center in Binghamton says without the health insurance coverage provided by Medicaid disabled people are mired in a cycle of poverty. Dibble: "I'm getting to the point of extreme frustration and outrage that we don't have one yet. And that we have to sit up here and almost sound like we're begging for something that we have a right to...to live and to work." The concept of a Medicaid Buy-In program has been agreed to by Governor Pataki and legislative leaders, but its been held up along with the late state budget. In Albany, I'm Karen DeWitt. ------------------------------------------------------------------------------------------------------------ WROW - AM (40 Seconds) June 5, 2001 2:30 PM Mike Carey [Telephone interview between Mike Carey and Brad Williams. Several topics were discussed related to the Medicaid Buy-In program. Different questions and responses were aired on the half-hour throughout the day.] Advocates are rallying in Albany today in support of a Medicaid Buy-In program for New Yorkers with disabilities. The bill passed the Assembly, but still needs Senate approval. The measure would allow the disabled to earn a living while still receiving Medicaid. State independent living spokesperson Brad Williams says he was pleased the Governor proposed such a measure in his State of the State message. Williams: "The income levels really need to allow ALL individuals to participate. Otherwise, its going to create a 'glass ceiling' where people will only be able to earn up to a certain amount and then be stuck at that point. We also want people to be able to have access to greater resources. People need to be able to save for the future." ------------------------------------------------------------------------------------------------------------ NEWSPAPERS Times Union June 6, 2001 Jay Jochnowitz, State Editor Demonstrators voice support for plan to extend coverage for people with disabilities A bill that would give disabled people Medicaid coverage even after they return to work moved closer to reality Tuesday as several hundred demonstrators, many of them in wheelchairs, demanded New York finally pass the legislation. The "Medicaid buy-in'' bill, pushed for several years, would allow the blind, mentally ill, HIV and AIDS sufferers, and those with other disabilities to earn more than the current thresholds while keeping their benefits under the government program. Currently, individuals who earn above the federal poverty level of $7,500 a year lose their Medicaid benefits. Proponents of the buy-in program say regular health plans don't address critical needs of the disabled, such as home assistance, and that the policy discourages people from working. Those with jobs, they say, forgo raises or limit their hours to stay below the income threshold. "I have highly qualified, professional employees, and I'm forced not to give them the benefits that every other American is entitled to,'' said Laura Hagen, executive director of the Capital District Center for Independence, one of several groups that spoke at the Capitol. Additionally, because people who lose their jobs can't qualify for Medicaid if they have $3,750 in resources, they must go through their savings and retirement accounts, sell second cars and use up home equity before they can get into the program, noted Sue Meineker, benefits advisor with the Center for Independence. "The only choice is to spend yourself down into poverty,'' she said. Separate bills have been proposed by the Legislature and Gov. George Pataki. Both would allow people to earn more and, as their income grows, pay all or part of a Medicaid premium. However, the bills differ in who would qualify. Pataki's bill would cap earnings at about $42,000 for a single person and $58,000 for a household of two. Above that, people could not purchase coverage. They would also have to have no more than $10,000 in assets. The legislative bill, already passed by the Assembly, has no earnings cap. After earnings reach $68,000 for an individual and $90,000 for a household of two the premium would go to full price, about $3,900 for one person and $5,500 for a two-person household. The bill also allows up to $40,000 in resources. The bill moved out of the Senate's Social Services Committee on Tuesday and is now in the Rules Committee, one step away from a floor vote. But Senate Republican majority spokesman John McArdle noted that because it involves new spending, the bill can't go anywhere without a state budget in place or a message of necessity from the governor. Pataki said he hopes a bill can be accomplished this year. The program would cost an estimated $93 million, but with federal reimbursements, premiums and the additional income tax the state would reap as disabled people earn more, the state's tab would be closer to $14 million, advocates say. ------------------------------------------------------------------------------------------------------------ Ottaway News Service June 6, 2001 Matt Smith Activists urge passage of Medicaid buy-in bill Albany - Hundreds of disabled protesters marched on the state Capitol yesterday, demanding passage of a bill that would allow them to keep their Medicaid benefits while holding down a meaningful job. Time, however, may not be on their side. Lawmakers are expected to wrap up this year's legislative session and bolt from Albany June 21, regardless of whether there's a new state budget in place. "We're trying to catch lawmakers before they leave," said Harvey Rosenthal, a mental-health activist and a leader in yesterday's lobby effort. "We make up a strong coalition of registered voters who will make their voices heard." Known as the Medicaid buy-in bill, the legislation would impact a wide range of New Yorkers suffering from physical and mental disabilities, and progressive illnesses such as HIV. Under the proposed law, disabled people could keep their public-funded health coverage by paying for Medicaid on an income-based sliding scale even if their salary was higher than the poverty level, which is roughly $8,000. Many disabled New Yorkers depend on Medicaid's far-reaching benefits such as coverage for health aides, medical equipment and high-cost medication, which other insurers will not cover. Yet, because of Medicaid's income-based structure, many disabled are forced to avoid full-time employment because they'd lose services. Buy-in legislation has passed the Democratic-run Assembly and is awaiting passage in the Republican-controlled Senate. Meanwhile, Gov. Pataki has introduced his own bill. Though activists are encouraged by the governor's support, they said his proposal sets income levels too low. The Assembly and Senate legislation would allow individuals making up to $70,000, and couples making up to $94,000, to buy into Medicaid. Pataki's bill sets limits at $44,000 and $58,000, respectively. Pataki, who listed buy-in legislation as a priority during this year's State of the State address, said yesterday he is hoping to iron out a deal in New York before the lawmakers adjourn later this month. ------------------------------------------------------------------------------------------------------------ The Legislative Gazette June 5, 2001 [Six-page spread. Pages 17-22. Content three and one-half pages of text and two and one-half pages of supporting advertisements. The text and ads appeared one day before the press conference and rally. Text provided below.] [Several hundred advocates pack the front steps of the Capitol for the rally.] WE NEED A MEDICAID BUY-IN THAT DOESN'T EXCLUDE HARD-WORKING NEW YORKERS WITH DISABILITIES New York needs a Medicaid buy-in that allows disabled workers to establish careers, marry and save for the future. We must build upon Governor Pataki's proposal. We urge Senators to support the expanded program passed by the Assembly and proposed by Senator Marchi in S.1691 that will: 1) Allow individuals with income up to $70,000 (couples to $94,000) to buy health coverage by paying a sliding scale premium and allow workers with higher income to purchase coverage at full premium -- the Governor's proposal would exclude anyone who makes more than $44,000 per year (couples to $58,000). Currently, people with disabilities cannot find the broader coverage they need in the regular insurance market; programs that include benefits like personal care attendants or certain medications are either unavailable or cost-prohibitive. We seek an inclusive Medicaid Buy-In program similar to the very popular Child Health Plus program that is available to eligible participants irrespective of income. Why leave out very talented individuals who are capable of earning more and paying higher premiums and taxes? 2) Raise the allowable resource limits from $10,000 to $40,000 in assets. New York currently requires no such limitation on assets in the Child Health Plus or EPIC programs. We are providing fair and open access to health care needed by our children, their families, and our seniors. Let's not leave out New Yorker's with disabilities! People with disabilities need to save for their futures as full participants in society as taxpaying homeowners. 3) Provide for a demonstration project for individuals with potentially disabling conditions like HIV infection or early-diagnosis multiple sclerosis. Current stringent disability definitions and review processes exclude individuals who are very likely to experience disabilities that increase in severity. Let's keep people with disabilities in the workforce with health care to support their ability to stay in the mainstream. Why should individuals with disabilities wait until they're fully disabled to work? 4) Implement a sliding scale premium structure, guaranteeing Medicaid eligibility for one year from termination. Let's provide a proper safety net of support for those willing to assume the risks of re-entering the workforce! 5) Create an advisory board that provides cross-disability consumer representation and control. We must allow people with disabilities, who have historically been subject to policies without their input, to have their views included in this program. DON'T LEAVE US OUT OF THE BUY-IN! Mark Hernandez: I am a 40-year-old man who utilizes a wheelchair and is HIV positive. Currently, I make $6.25 an hour working part-time for the State. I had to turn down a pay raise and promotion because the excess income would make me ineligible for Medicaid. Currently, I have no choice. I need my medications and personal attendant services to maintain my health. I want to work full-time. I also want to get married, but can't because the income limits proposed under the Governor's plan would make me ineligible when combined with my fiancé's earnings. I am willing to pay my fair share under S.1691. Michael H.: I am a 39-year-old attorney who suffered a head injury several years ago. I am a fully competent lawyer and licensed to practice. Presently, I am employed part-time as an advocate in Westchester County. The buy-in program would allow me to work more hours without fear of losing my Medicaid (due to excess income). By working longer hours, I hope to increase my stamina and become employed in a more demanding legal position. Without S.1691, my door of opportunity is closed to most upper level attorney jobs. I would be left out under the Governor's plan. I need the "Work and Wellness Act" to achieve my career goal, especially given the higher cost of living in the New York City area. Daniel Winchester: I am a 47-year-old deaf man with cerebral palsy. I cannot use my hands in a coordinated manner and use a power chair to get around. I have a doctorate in developmental psychology and have done post doctorate work in early intervention with families of children with disabilities under federal grants. I am ready to build a career, but I need the Medicaid Buy-In program as a foundation for my work. I require daily personal care by my personal assistant in many tasks. Medicaid not only covers my home care needs but also wheelchair maintenance and repair. In addition, Medicaid is the only insurer that covers my hearing aid maintenance and pays for a new one when required. S.1691 would enable me to obtain employment commensurate with my degree and utilize the services of an assistant to meet my personal needs on a daily basis at both work and home. John Moynihan: I am a 38-year-old man who has a spinal cord injury due to an accident that happened in 1995. Prior to this injury, I was an electrician who earned in excess of $40,000 per year. I am currently unemployed and working on an associate's degree in multimedia management and development. I expect to graduate in 2003. I need Medicaid to provide me with personal assistance to get out of and into bed each day. This service is my lifeline. I would not be able to remain independent in the community without it. This includes going to college and obtaining employment in the future. I also need Medicaid to pay for my health related supplies and prescriptions. Without a buy-in program, my years of study and preparation would be worthless. I would have no choice but to remain on a fixed income to remain eligible for Medicaid. I would prefer to be a productive, tax-paying citizen once again. I want to start my new career without a "glass ceiling" that prevents my growth. I am willing to pay for my Medicaid on a sliding scale as my income increases. S.1691 would provide me with this opportunity. Alexander Lehmann-Haupt: I am a 58-year-old man with bi-polar disorder. I attended college for 1 year and have worked as an advocate for youths and seniors. I need a buy-in program because private insurance will not pay for my expensive medications. I can't afford to pay $850.00 a month out of my pocket for medication. I also want to work full-time again without losing Medicaid coverage. I need a Medicaid Buy-In that helps me work, not leaves me out. [Photo of advocates at rally carrying signs that read, "Disabled Americans VOTE! Let Our Vote Count for You! Accessible Polling Booths and Sites a Must!"] Disabled Voters Turnout in Record Number WASHINGTON, DC - In spite of the difficulties posed by the voting system, America's disability community rallied to the polls this year. More than half a million Americans with disabilities registered to vote, many due to an aggressive national campaign led by the National Organization on Disability (N.O.D.). And people with disabilities cast their ballots in record numbers on Nov. 7. Data from the Harris Poll show that 14 million Americans with disabilities voted this year, up dramatically from 11.3 million in 1996. This represents an increase from 30 to 41 percent of voting-aged people with disabilities. Harris also concluded that citizens with disabilities are a cohesive voting bloc; half say that disability issues are a major concern when they decide for whom to vote, while for 23 percent, it is the highest priority. Thus, party affiliation is not the driving factor. The increase in turnout this year reflects a significant dedication to democracy by the disability community, and recognition of the value of a vote-especially because voting is more difficult than is should be for many in this population. Forty-one percent turnout is still a substantially lower level than that of the entire population (roughly 50 percent), and to close this gap, those with disabilities are demanding more accessible voting systems that will facilitate parity. Americans with Severe Disabilities Lag in Key Areas WASHINGTON, DC - The following data is based on a national survey separate from the 2000 census, as reported by The Associated Press. Overall, 20 percent of all Americans, or 52.6 million people, have a disability. Of that total, 33 million said their disability was severe. Only 31 percent of working age individuals with a severe disability had a job, with average earnings of $18,631 per year. By comparison, 78 percent of all working age Americans are employed, averaging $30,155 a year. The study also found that 28 percent of individuals with severe disabilities over age 25 live in poverty, compared to 8 percent for Americans without disabilities. PRESS CONFERENCE, Medicaid Buy-In, Tuesday, June 5, 2001, 11:00 AM, LCA Room, Legislative Office Building (LOB), Albany, New York. Ads from the Self-Advocacy Association of New York State (SAANYS), ADAPT of New York State, Disabled in Action of Metropolitan New York (DIA), New York State Association of Community and Residential Agencies (NYSACRA), Consumer Directed Personal Assistance Association of New York State (CDPAANYS), Brain Injury Association of New York State (BIANYS), Eastern Paralyzed Veterans Association (EPVA), and FEDCAP. Governor Pataki Proposes a Medicaid Buy-In Program This year's 2001-02 Executive Budget includes a plan to provide a Medicaid Buy-In to New Yorkers with disabilities. The Governor's proposal would break down a major barrier for an estimated 19,000 people with disabilities to achieve success in the workplace by expanding Medicaid eligibility to these individuals. "Under my Budget proposal, New Yorkers with disabilities would no longer have to choose between going to work or having health insurance," Governor Pataki said. "By expanding Medicaid, the working disabled will be able to pursue new or better employment opportunities without losing their health care coverage." The Budget would expand Medicaid eligibility to all disabled individuals with incomes up to 250 percent of the Federal SSI poverty level, matching California's program and ten other states. This would include New Yorkers with disabilities with annual incomes up to approximately $44,000 for singles and $58,000 for couples. Also, participants will be able to keep up to $10,000 of their personal resources and still meet the income requirements for eligibility. The program includes a sliding scale of premiums for recipients. Premiums will be affordable, ranging from an estimated $50 to $130 per month. The program is scheduled to begin on January 1, 2002, and will be fully phased-in by 2004. The total program cost is expected to be approximately $90 million. Assembly Passes Enhanced "Work and Wellness Act" As promised at the end of last session, Speaker Sheldon Silver made the passage of a Medicaid Buy-In program an early priority for 2001. Introduced by Assemblyman James Brennan, the "Work and Wellness Act" passed unanimously. The 2001 version of the bill allows for the participation of individuals above 400% of the Federal Poverty Level. This enhancement will effectively remove the ceiling and permit people with disabilities with earnings above $68,000 to enroll in the program by paying the full premium, which is estimated at $3,800 to $4,000 per year. It also guarantees Medicaid eligibility for up to one year from involuntary termination. The bill still permits participants to keep up to $40,000 in personal resources, includes a demonstration project for individuals with potentially disabling conditions like HIV infection or early-diagnosis multiple sclerosis, and allows for the establishment of a consumer-controlled, cross-disability advisory board to guide the program. Republican Senator John Marchi has sponsored a bill in the Senate that is similar in content to the one approved by the Assembly. Differences between the Governor's proposal and the Legislature's "Work and Wellness Act" will have to be worked out during budget negotiations. Ads from the Association of Independent Living Centers in New York (AILCNY), Coalition On Independent Living (COIL), and the New York State Independent Living Council (NYSILC). Ads from the Cerebral Palsy Association of New York State (CPANYS), Gay Men's Health Crisis (GMHC), and the New York State Rehabilitation Association (NYSRA). TIPS ON HOLDING A SUCCESSFUL PRESS CONFERENCE HERE ARE A FEW TIPS ON HOLDING A SUCCESSFUL PRESS CONFERENCE Develop a list of targeted media markets for television, radio, and newsprint. The list should include the names of reporters, along with their e-mail addresses, telephone and fax numbers. Use assignment desk or assignment editor when no name is provided. You should not have to compile a new list each time you contact the media. Ideally, your press list should be computerized in such a way that you can generate the list at a moment's notice. It is important to keep your list updated. Schedule the press conference in advance. Make sure that it is held in an accessible location, including the access of the podium. Develop a theme around your issue that communicates a consistent message and the desired result (i.e., pass a Medicaid Buy-In for New Yorkers with disabilities before Election Day 2000). Develop four to five key talking points that support the theme (i.e., people should not have to choose between health care or a job, other states have taken the lead on this issue, business community support, voter registration and turnout). Match up speakers for each one of the talking points that support the theme. Develop an agenda for distribution at the press conference. Refer to the attached agenda. At the press conference, one person takes the lead and acts as an emcee. They also direct the question and answer period. It is very important for the emcee to keep control of the event. They must be able to redirect any inconsistent questions or responses to the theme of "why we are here today." Develop a press advisory and deliver to your direct media contacts and list one-week before the event. It draws their attention to the issue and the event. This permits the reporter to schedule the press conference unless something else comes up. Refer to the attached press advisory. The press advisory should be faxed or e-mailed to your contacts, depending on the preference of the media source. You can always hand deliver the press advisory to capitol press crew, since they are conveniently located in one centralized location. This allows you to establish face-to-face relationships. Develop a press release. It frames the issue and is supported by quotes from individuals. These "sound bites" will allow a reporter to craft an article even if they were not at the event. They can also place calls to the contact numbers on the press release if they need to expand the story. See the attached press release. The press release is delivered the morning of the event (i.e., around 8:30 AM). It can be faxed, e-mailed, or hand delivered to your contacts, depending on the preference of the media source. It is best to send or leave a message with a specific reporter. If you don't have a contact person, then address the message to the assignment desk/editor. Make follow up calls on your cell phone until you get confirmation (i.e., yes or no) from each source. Please don't hesitate to leave voice mail messages with radio stations. They can always call you back and do an interview over the phone. Continue to hound television stations right up to the start of the event. Arrange the room to accommodate access. Speakers are in line with the podium. Non-speakers fill in to support the speakers behind the podium. All non-speakers must realize that it is their role is to not speak...just clap, applaud, and nod. Leave room for the interpreter. Put "reserved for the press" sheets on all the chairs in the first three rows. Assign someone to greet the press and direct them to your spokespersons. Have a press table where reporters, photographers and camera crews sign in near the point of entry into the room (so you can add them later to your press list and have a way to target your time to clip coverage). Hand out press kits containing the agenda, press release and background pieces on your organization and the issue. Start on time! The emcee should welcome the press (i.e., "thank you for coming, my name is...as a member of...we are here today to talk about..."). This person should briefly review the agenda and then introduce each speaker and the topic of their discussion. The speakers should limit their comments to 2-3 minutes. The agenda ends with a question and answer period (i.e., Q & A). Use your sign in list for two different follow up activities. First, look to see what newspapers or stations did not attend the event. Prioritize about six media sources out of this list and resend them the press release packet and digital photos, if possible. Call them to confirm receipt of the materials and likelihood of providing coverage. Second, look to see what newspapers or stations did cover the event. Monitor them to clip any coverage for your records. IL NET: Media Relations Page ii