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Conference Participants

Arizona
Dean, Gwen
Moore, Theresa
Sundet, Genevieve Gene

Arkansas
Barrett, Sandra

California
Berrol, Elissa
Bleecker, Tom*
Byers, Rosie
Friss Feinberg, Lynn
Heinritz-Cantebury, Janet
Jones, Cyndi*
Kaplan, Deborah*
Litvak, Simi*
McCovey, Jene
Mona, Linda
Perry, Alaine*
Richardson, Ethel
Zukas, Hale

Colorado
Auberger, Michael

Florida
Aubrey, Andree
Hackett, Patti

Georgia
Johnson, Mark*

Illinois
Coleman, Diane J.D.
Parish, Susan*

Iowa
Hillyard, Jack
Mathis, Cristina

Kansas
Oxford, Mike*
Shuckahosee, Robert

Kentucky
Casey, Angela
Johnson, Mary*

Maryland
Countee, Mick
Hafner, Gayle
Helfer, Bryna
Miller, Nancy
Mahoney, Kevin J.*

Massachusetts
Chamberlain, Judi
Ellison, Marsha
Sciegaj, Mark*
Shor, Ann
Spooner, Paul

Michigan
Chaney, RoAnne

Minnesota
Kane, Rosalie

Montana
Chief Stick Jr., Patrick
Fowler, LaDonna
Katz, Marsha

New Jersey


Ditto, William
Wussow, Jay*

New Mexico
Myers, Bern
Parker, Jim

New York
Campbell-Korves, Maureen
Hallock, Anne*
Mathieu, Jacob
Peluso, Michael
Saviola, Marilyn
Shields, Ralph William
Taylor, Jeanie
Walden, Ruth

Oregon
Burger, Ric*
Powers, Laurie
Staehely, Jan
Sundet, Genevieve Gene

Pennysylvania
Browdie, Richard
Burnett, Jennifer
Gold, Stephen*
James, Cathleen (Cassie)
Kleinmann, Kathleen
Ross, Bill 'Chico'
Shapiro, Sigi
Sozanski, Denise

Texas
Dautel, Pamela*
Kafka, Bob*

Virginia
Argoff, Jeanne*
Barcus, Mike
Bergman, Allen
Chrzanowski, Leye
Galbraith, Suellen R.
Garner, Constance
Harvey, Jeanette*
Turner, Ed

Washington, DC
Aguehounde, George
Beatty, Phillip*
Berland, Betty Jo
Brannon, Ruth
Claypool, Henry
Cowell, Fred
Dize, Virginia
Doty, Pamela
Fields, David*
Firman, James*
Fish-Parcham, Sheryl
Flanagan, Susan A.*
Ford, Marty*
Garner, Constance
Gennaro, Mary
Goldstein, Marcie
Heumann, Judy*
Imparato, Andrew
Kumar, Paul
Laird, Pat
Lancaster, John
Mathis, Jennifer*
McKay, Hunter*
Nelson, John
Ogle, Rebecca
Page, Lee*
Priauix, Elizabeth
Riggs, Judith*
Starnes, Nancy
Tilly, Jane*
Velgouse, Linda*
Wiener, Joshua*
Williams, Bob*
Yocom, Carolyn
Young, Tony*

Wisconsin
Johnson, Dan


Aguehounde, George
Home Care Aid Coordinator
DC Center for Independent Living
Wahington, D.C. 20002
Phone: 202-388-0033
Fax: 202-398-3018
Affiliation: Consumer Advocate


bio unavailable
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Argoff, Jeanne*
Executive Director
Disability Funders Network
2529 Kirklyn St.
Falls Church, VA 22043
Phone: (703) 560-0099
Fax: (703) 560-1151
e-mail: NJArgoff@aol.com
Affiliation: Funder

Dr. Jeanne Argoff is Executive Director of the Disability Funders Network, an affinity group affiliated with the Council on Foundations. She spent 12 years from 1986 to 1998 in increasingly responsible positions with The Dole Foundation for Employment of People with Disabilities in Washington, DC, ranging from Grants Manager to Vice President. For the past six years she has worked with the Council on Foundations, independent funder groups and individual grantmakers to increase knowledge of and attention to disability issues in philanthropy. She coordinated the Funding Partnership for People with Disabilities (a grantmaking collaborative), served on the inclusiveness committee at the Council, is currently a Washington Regional Association of Grantmakers Board Member, and produced a video on disability for grantmakers. She holds a Ph.D. from the National University of Ireland, University College, Dublin.
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Auberger, Michael
National Organizer
ADAPT
201 S. Cherokee
Denver, CO 80223
Phone: (303) 733-9324
Fax: (303) 733-6211
e-mail: adaptden@plinet.com
Affiliation: Consumer Advocate


Michael Auberger is presently the Executive Director of the Atlantis Community Inc., which is the second oldest independent living center in the United States serving people with disabilities. Atlantis provides fifty-two thousand home health visits annually as well as offers a home mortgage program for people with disabilities in conjunction with two national financial institutions. Among Michaels numerous accomplishments he lists creating the first home mortgage program in the United States for people with disabilities. He is the founder of ADAPT, the leading disability rights organization in America. In addition, he is one of the authors of the transportation section of the Americans with Disabilities Act. Michael is considered one of the foremost disability rights leaders in the nation.
He is a national organizer for ADAPT a national disability rights organization in forty four cities in thirty-eight states with over 6,000 members. As a national leader in the disability rights movement, Michael has become a founding Board Member of the American Association of People with Disabilities as well as a board member of TASH. He sits on the advisory board for the Center for Universal Designs, the Colorado Community Advisory Board and a member of the Fannie Mae national Housing Impact Advisory Council.


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Aubrey, Andre
Project Manager
Florida Department of Elder Affairs
4040 Esplanade Way
Tallahassee, FL 32399-7000
Phone: (850) 414-2077
TDD: (850) 414-2001
Fax: (850) 414-2008
e-mail: aubreya@elderaffairs.org
Affiliation: Program Administration


Andree Aubrey is affiliated with the Florida State Government as the project manager for a consumer-directed project being implemented under a 1115 Medicaid Research and Demonstration waiver. (Florida is participating in the four state Cash and Counseling projects; funded in part by the Robert Wood Johnson Foundation. The Florida project is called the Consumer Directed Care Project.
Floridas greatest contribution to PAS is our participation in the national Cash and Counseling Research and Demonstration Project. Florida has also been a pioneer in consumer-directed programs with our 22-year old Home Care for the Elderly and Home Care for Disabled Adult programs. Participants of these programs are given a monthly financial grant to make purchases which will support a family in caring for an individual who would otherwise require nursing home admissions. Participants and family members make choices about what to purchase with the financial grants with minimal oversight from the state.
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Barcus Mike
Director of Training
Virginia Commonwealth University
RRTC on Workplace Support
Box 842011
1314 W. Main St.
Richmond VA 23284-2011
Phone: 804-828-9547
e-mail: jbarcus@saturn.vcu.edu
Affiliation: Research/University


In my role as supervisor I have been involved in advocating for the availability of PAS in the workplace. I have been involved in the development and implementation of focus groups organized to specifically discuss PAS in the workplace. As a director of training for a research and training center it has been my responsibility to assure that our sponsored training activities address the personal assistance needs of participants. As a university project director, my greatest contribution to PAS is the ability to educate and distribute information.


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Barrett, Sandra
Program Administrator
AR Department of Human Services
Aging & Adult Services
P.O. Box 1437, Slot 1403
Little Rock AR 72203-1437
phone: (501) 682-8531
fax: (501) 682-8706
e-mail: sandra.barrett@mail.state.ar.us
Affiliation: Program Administration


I manage two Medicaid waiver programs, which permit clients to direct their own services. This includes being able to recruit, hire, manage and supervise their personal care assistants. The programs offer counseling, training and support for the client who may have minimal experience in this area.
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Beatty, Phillip*
Researcher Associate
National Rehabilitation Hospital
Researcher Center
1016 16th Street NW, 4th floor
Washington, DC 20003
Phone: (202) 466-1900
Fax: (202) 466-1911
e-mail: pwb1@mhg.edu
Affiliation: Research/University


Phillip Beatty is currently a Research Associate at the National Rehabilitation Hospital Research Center. He has served as the Project Director for Virginias recent evaluation of consumer-directed personal assistance services program. Mr. Beatty has also served as a consultant on a number of similar state-level evaluations of various home and community based care programs. He has published numerous articles illustrating the positive outcomes (increased productivity, increased satisfaction with services, increased use of preventive health care services, increased rates of employment) associated with consumer-directed PAS programs.
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Bergman, Allen
President, CEO
NBIA
105 N. Alfred Street
Alexandria, VA 22314
Phone: (703) 236-6000
Fax: (703) 236-6001
Affiliation: Consumer Advocate


bio unavailable
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Berland , Betty Jo
Planning and Evaluation
NIDRR
600 Independence Avenue, SW
Washington, DC 20202-2572
Phone: (202) 205-9739
Fax: (202) 205-8515
e-mail: betty_jo_berland@ed.gov
Affiliation: Funder


bio unaailable
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Berrol, Elissa
Training and Dissemination
Coordinator
World Institute on Disability
510 Sixteenth Street, Suite 100
Oakland, CA94612-1500
Phone: (510) 763-4100
Fax: (510) 763-4109
e-mail: elissa@wid.org
Affiliation: Policy


Elissa Berrol is the Training and Dissemination Coordinator for the World Institute on Disability. Elissa is responsible for utilizing Researcher findings from the Researcher and Training Centers (RRTCs) to (1) create pertinent and user-friendly manuals and trainings for a variety of stakeholders, (2) disseminate information for a wide cross section of populations and (3) make the important work of the RRTCs accessible to everyone. She designed and organized the Personal Assistance Services conference. Ms. Berrol has been involved in training for over ten years and has spent the last five years as a training consultant and curriculum designer for a large variety of universities, corporations and non-profit organizations. She holds a Masters in Education from Harvard University and her area of expertise is in disability awareness training and presentation skills for educators.

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Bleecker, Tom*
Research Director
World Institute on Disability
510 Sixteenth Street, Suite 100
Oakland, CA 94612-1500
Phone: (510) 251-4338
e-mail: tom@wid.org
Affiliation: Research


Thomas Bleecker, Ph.D. is Research Director of the Rehabilitation Research and Training Center on Personal Assistance Services (RRTC-PAS) at the World Institute on Disability. Dr. Bleecker oversees the national survey of policies and utilization pertaining to use of Personal Assistance Services by people with disabilities, performs statistical analysis for all PAS projects, and prepares division publications for dissemination. Specific projects on which Dr. Bleecker serves as Principal Investigator include: The fourth State of the States National Survey of PAS programs, describing program characteristics and examining the extent to which services are consumer-directed; the Cost-Effectiveness Study, exploring the relationships among PAS program variables, consumer variables, and consumer outcomes; the Policy Study, investigating innovations in PAS policy across the country; the Worksite PAS Study, exploring models of PAS in the workplace as well as obtaining information about consumers who utilize worksite PAS; and the Qualified Workforce Study, exploring ways to increase the quality and supply of the PAS independent provider workforce.

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Brannon, Ruth
Program Specialist
National Institute on Disability and Rehabilitation Researcher
330 C Street SW #3413
Washington, DC 20202
Phone: (202) 358-2971
Fax: (202)205-8515
e-mail: ruth_brannon@ed.gov
Affiliation: Federal Administrator


bio unavalable
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Browdie, Richard
Secretary of Aging
Pennsylvania Department of Aging
Forum Place, 555 Walnut Street
5th floor
Harrisburg, PA 17101-1919
Phone: (717) 783-1550
Fax: (717) 772-3382
e-mail: browdie@aging.state.pa.us
Affiliation: Program Administrator


bio unavailable
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Burger, Ric*
President
Oregon ADAPT
1000 SE 130th Ave.
Portland, OR 97233-1616
Phone: (503) 232-7411
Fax: (503) 232-7480
e-mail: ricburger@juno.com
Affiliation: Consumer Advocate


After becoming disabled due to complication from diabetes, Ric Burger began advocating for access to PAS as a member of ADAPT. In 1998, Mr. Burger helped start an ADAPT chapter in Portland, Oregon, and has been working with other disability advocates and representatives of the Service Employees International Union to work for the creation of an entity similar to the Public Authorities model being used in some counties in California. In addition, Mr. Burger is also a member of the Disability Services Advisory Council for Multnomah County Aging and Disability Services. He is a member of the steering committee of Statewide Alliance for Independent Living (SAIL) which is pushing for Oregon to adopt a public entity system for paying attendant wages and benefits. He was instrumental in persuading Oregon to sign on to the brief opposing Georgia in the Olmstead case.

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Burnett, Jennifer
Pennsylvania Coalition of
Citizens with Disabilities
101 South Second Street, Suite 4
Harrisburg, PA 17101
Phone: (717) 238-0172
Fax: (717) 238-8663
e-mail: jbpccd@aol.com
Affiliation:Media


bio unavailable
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Byers, Rosie
Vice President,
Home Healthcare Local 250
Planing For Elders in the
Central City (PECC)
62 Dukes Ct.
San Francisco, CA 94124
Phone: (415) 821-4203
Affiliation: Service Provision


Rosie is a union steward and represents home-care workers on the unions executive board as an elected vice-president from the Home-care Division. She has provided leadership for home-care workers that guided the campaign to organize the 6000 independent providers and to work in coalition with consumer groups on the IHSS Task Force. She represents the home-care workers at many SEIU forums where she works on state and national issues that affect home-care. Rosie works to help consumers live independently with dignity at their home rather than in an institution.

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Campbell-Korves, Maureen
Coordinator
Consumer Involvement
Mt. Sinai Center
185 West End Avenue, Apt. #4L
New York, NY 10023
Phone: (212) 799-6287
Fax: (212) 979-1937
Affiliation:Consumer Advocate


bio unavailable
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Casey, Angela
Personal Care Attendant
Program Manager
Center for Accessible Living
981 S. 3rd Street
Louisville, KY 40203
Phone: (502) 589-6620
TDD:(502) 589-3980
Fax: (502) 589-398
e-mail: amcasey@callou.win.net
Affiliation: Service Provision


Angela Casey has been the Manager of the Personal Care Attendant Program at the Center for Accessible Living (CAL) in Louisville, Kentucky since June of 1998.
She helps individuals with disabilities find attendants, places eligible individuals on the PCAP waiting list, gives referrals to other agencies in the area that may be able to help with attendant care, and a number of other services. Her greatest contribution is being able to give people a bit of hope, even if they have to wait for years to get the help that they need with the PCAP.

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Chamberlain, Judi
Project Director
Boston University
930 Commonwealth Avenue
Boston, MA 02215
Phone: (617) 353-3549
Fax: (617) 353-7000
e-mail: MadPride@aol.com
Affiliation: Research/Consumer Advocate


I am a psychiatric survivor who has worked for more than 20 years in the psychiatric survivor movement, and for nearly ten years in the cross-disability field. I believe that PAS has enormous potential for people with psychiatric disabilities, and that we must make every effort to insure that PAS services are available in a truly cross-disability manner. I have co-led a research project on PAS for people with psychiatric disabilities, which includes a state-by-state survey of whether PAS services are made available to people with this disability.

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Chaney, RoAnne
Operations Director
Michigan Disability Rights Coalition
740 Lake Lansing Rd., Suite 400
East Lansing, MI 48823
Phone: (517) 333-2477
Fax: (517) 333-2677
e-mail: roanne@sprynet.com
Affiliation: Consumer Advocate


RoAnne Chaney worked for 10 years as Associate Director of the Ann Arbor CIL. During that time she coordinated a PAS referral pool, developed operational policies for Michigans PAS Reimbursement for Employment Program (PASREP). Currently she participates in a coalition of statewide groups conducting grassroots advocacy around PAS issues, serves on a policy committee for the PASREP, and serves on advisory groups to Michigans Medicaid Managed Care system including Long-Term Care and PAS.
My greatest contribution to PAS has been developing the policies and refining the model for Michigan's PASREP. I continue to contribute to PAS grassroots efforts and statewide policy and program implementation.

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Chief Stick Jr., Patrick
Project Assistant
Rural Institute on Disability
University of Montana
52 Corbin Hall
Missoula, MT 59812
Phone: (406) 243-2447
Fax: (406) 243-2349
Affiliation: Consumer Advocate


bio unavailable
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Chrzanowski, Leye
President/Executive Editor
Disability News Service
13703 Southern Wood Ct.
Chantilly, VA 20151-3345
Phone: (703) 471-7993
Fax: (703) 834-0967
e-mail: leye@disabilitynews.com
Affiliation: Media


Leye Jeannette Chrzanowski is the president and executive editor of the Disability News Service, Inc. (DNS), a for-profit company based in Chantilly, Virginia. The company is the first syndicated news service in the United States to be owned by disabled journalists. DNS regularly provides disability-related news and information to the national media. Ms. Chrzanowski founded the Excel! Networking Group, a non-profit employment organization for people with disabilities who live in the Washington, D.C. area. In 1994, the Fairfax County, Virginia, Board of Supervisors honored Ms. Chrzanowski for her volunteer work and for spearheading local and state legislation that has benefited disabled people and home-business owners.

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Claypool, Henry
Senior Advisor to the Administrator
on Disability Policy
Health Care finance Administrator
200 Independence Ave SW
Room 314-G
Washington, DC 20201
Phone: (202) 690-6726
Fax: (202) 690-6262
Affiliation: Policy/Legislator


bio unavailable
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Coleman, Diane J.D.
Executive Director
Progress Center for
Independent Living
7521 Madison Street
Forest Park, IL 60130
Phone: (708) 209-1500
TDD: (708) 209-1826
Fax: (708) 209-1735
e-mail: ndycoleman@aol.com
Affiliation: Consumer Advocate


bio unavailable
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Countee, Mick
Director,
NSCIA
8300 Colesville Rd, Suite 551
Silver Springs, MD 20910
Phone: (301) 588-6959
Fax: (301) 588-9414
Affiliation: Consumer Advocate/ Litigator


bio unavailable
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Cowell, Fred
Staff Director
Paralyzed Veterans of America
801 18th Street NW
Washington, DC 20006
Phone: (202) 416-7602
Fax: (202) 331-1657
e-mail: fredc@pva.org
Affiliation: Consumer Advocate


Fred Cowell is the Staff Director of PVAs Health Policy Department and serves as Chair of PVAs interdepartmental workgroup on Personal Assistance Services. The mission of the workgroup is to advance the availability of PAS services and to coordinate PVA activities in this area. Currently, they are working to develop a management guide to enable persons with disabilities to self-direct their attendant care. Additionally, the workgroup is developing a recommendation to create a local area pilot project to operate a PAS registry. Many of PVAs members are aging veterans who have lived independently, with a spinal cord injury, for years. Unfortunately, the aging process has contributed to the loss of functional ability. Thus many of these individuals are now seeing the need for personal assistant services to remain independent and to continue to live in their own homes. The PVA PAS workgroup is trying to help meet this need. Fred is also one of PVAs main advocates for passage of the Mi-Casa bill.

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Dautel, Pamela*
Research Coordinator
Independent Living Resources U
2323 S. Shepherd, Suite 1000
Houston, TX 77019
Phone: (713) 529-9232
TDD: (713) 520-5136
Fax: (713) 520-5785
e-mail: pdautel@ilru.org
Affiliation: Research


Pamela Dautel, M.P.H. is the Research Coordinator for ILRU (Independent Living Research Utilization) a program of TIRR Hospital. At ILRU, her projects include:
(1) collaborative relationships between Independent Living Centers and Vocational Rehabilitation Agencies; (2) funding diversity of Independent Living Centers; (3) Blue Ribbon Panel on National Policy Implications for Personal Assistance Services; (4) Research and Training Center on Managed Care and Disability; and (5) research collaboration with The Center on Emergent Disability at The University of Illinois at Chicago.
Before joining ILRU, Pamela designed and implemented health education strategies in the elementary school, emergency room, and clinical settings. She completed her Masters of Public Health, in Health Promotion, Health Education in December 1996.

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Dean, Gwen
Director
Arizona Bridge
to Independent Living (ABIL)
1229 E. Washington
Phoenix, AZ 85034
Phone: (602) 256-2245
Fax: (602) 254-6407
TDD: (602) 256-2245
e-mail: azbridge@abil.org
Affiliation: Program Administration


Gwen Dean has worked for ten years in developing Personal Assistant Services in conjunction with Maricopa County and Arizona Long Term Care. Gwen currently serves on the Arizona Health Care Cost Containment System Task Force, which is developing future Personal Assistant Programs for the state of Arizona. Gwen also manages the Personal Assistant Services at ABIL where there are 330 Personal Assistants currently employed.

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Ditto, William
Executive Director
New Jersey State Office
on Disability Services
222 South Warren Street
P.O. Box 700
Trenton, NJ 08625-0700
Phone: (609) 292-7800
TDD: (609) 292-1210
Fax: (609)292-1233
e-mail: waditto@dhs.state.nj.us
Affiliation: Program Administration


bio unavailable
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Dize, Virginia
Director, Center for the Advancement
of State Community Services Programs
National Association of State
Units on Aging
1225 I Street NW, Suite 725
Washington, DC 20005
Phone: (202) 898-2578
Fax: (202) 898-2583
e-mail: vdize@nasua.org
Affiliation: Program Administration


Virginia Dize has more than twenty years experience in long term care policy development, advocacy and program management. Ms. Dize is Director of the Center for the Advancement of State Community Service Programs at the National Association of State Units on Aging. In that capacity, she provides leadership and direction on long term care issues to enhance the capacity of states to develop infrastructures which integrate disparate community services into comprehensive and cohesive systems of care; tracks and analyzes policy and program issues related to innovations in home and community based services; and provides guidance and technical assistance to states on issues such as assisted living and consumer direction.
Currently, Ms. Dize directs a Robert Wood Johnson Foundation Independent Choices grant, the purpose of which is to develop an assessment tool that state policymakers and consumers can use to assess the degree to which their home and community based services system is consumer-directed. States will be able to use the assessment tool to develop a state-specific consumer direction reform agenda.

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Doty, Pamela
Senior Policy Analyst
ASPE
200 Independence Avenue, SW
Washington, DC 202036
Phone: (202) 690-5746
e-mail: pdoty@aspe.dhhs.gov
Affiliation: Program Administration


bio unavailable
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Eckels, Karyl
Program Administrator
World Institute on Disability
510 16th Street
Oakland, CA 94612
Phone: 510 763-4100
e-mail: karyl@wid.org
Affiliation: Policy


Karyl Eckels is the Project Administrator for the RRTC on Independent Living and Disability Policy (RRTC-ILDP) and the RRTC on Personal Assistance Services (RRTC-PAS), and providing supervision and oversight of daily administrative functions. Ms. Eckels joined the staff of WID's Personal Assistance Services division as a Research Associate and her contributions have been critical to WID's implementation of the PAS research agenda. Ms. Eckels' efforts to link the aging and disability communities and to facilitate dialogue on key issues of mutual concern resulted in an appointment to the White House Conference on Aging in the fall of 1994. As a direct result of her participation, language on PAS was added to a number of the initial resolutions. Prior to her tenure at WID, Ms. Eckels directed the Elderly Service Partnership Coalition and coordinated the Attendant Referral Program for the Berkeley Center for Independent Living. Working with diverse low-income communities in Oakland, she established a track record for developing effective, consumer oriented programs and systems aimed at achieving and maintaining independence for elders. Ms. Eckels is a woman with a disability and has a parent with a disability. She holds a BA in psychology and Afro-American Studies. Her work is shaped by the philosophy that elders, people of color and people with disabilities should have the opportunity to define for themselves what independence means and to determine which family and community supports best address their needs and goals.

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Ellison, Marsha
Senior Research Associate
Center for Psychiatric Rehabilitation
940 Commonwealth Avenue, West
Boston, MA 02215
Phone: (617) 353-3549
Fax: (617) 353-7700
e-mail: ellison2@bu.edu
Affiliation: Psychiatric Research


bio unavailable
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Fields, David*
Legislative Personal Assistant
United Cerebral Palsy Association
1660 L Street NW, Suite 700
Washington, DC 20036
Phone: (202) 425-8633
e-mail: dfields@ucpa.org
Affiliation: Service Provision


David Fields is a Personal Assistant and is very committed to the people that he serves.

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Firman, James
President, CEO
National Council On Aging
409 3rd Street SW Suite 200
Washington, DC 20004
e-mail: james.firman@ncoa.org
Affiliation: Consumer Advocate


Dr. Firman Brings more than 20 years of experience to the NCOA. Under his leadership, NCOA has become known as a center for innovation as well as expertise and advocacy in aging. He is a noted expert and consumer advocate on many issues affecting older persons&Mac220; including public policy, home care, long-term care, health insurance, finance issues, and intergenerational programs. Since joining NCOA in 1995, he has revitalized the organization and helped to chart a new course for the organization.
Prior to joining NCOA as president and CEO in January 1995, Dr. Firman was the president and CEO of the United Seniors Health Cooperative for 10 years. He has served as a senior program officer at the Robert Wood Johnson Foundation form 1981 to 1984. He is a co-founder of Grantmakers in Aging. Dr. Firman recently completed his term as chair of the Leadership Council of Aging Organization, a coalition of 42 of the nations largest organizations concerned with the well-being of older Americans.

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Fish-Parcham, Sheryl
Associate Director for Health Policy
Families USA
1334 G Street, NW
Washington, DC 20005
Phone: (202) 628-3030
e-mail: cparcham@familiesusa.org
Affiliation: Consumer Advocate


bio unavailable
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Flanagan, Susan A.
Senior Consultant
Engquist, Pelrine & Powell, Inc.
1201 Pennsylvania Ave, NW Suite 325
Washington, DC 20004
Phone: (202) 628-1134
Fax: (202) 628-1140
e-mail: sueflan@compuserve.com
Affiliation: Health Care Consulting


Susan Flanagan, M.P.H., is a senior consultant at Engquist, Pelrine & Powell, Inc. with 17 years of experience related to long-term care (LTC) and disability programs, finance, and reimbursement at the federal, state and corporate levels. During her tenure as Project Manager at the MEDSTAT Group, she conducted extensive research on state and Medicaid-funded consumer-directed personal assistance service programs (CD-PAS) for persons with disabilities and chronic conditions and the use of various intermediary service organizations (ISO) models to facilitate consumers' and their representatives' use of CD-PAS.
This research resulted in two papers for the U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation. The first is entitled Consumer-Directed Attendant Services: How States Address Tax, Legal and Quality Assurance Issues (1994), and the second, co-authored with Pamela S. Green, J.D., is entitled Using ISOs to Facilitate the Use of CD-PAS: Key Operational Issues for State Program Administrators (1997).
Susan has also assisted six states in developing and implementing CD-PAS programs using a variety of ISO models. She, along with Pamela Green, JD and Nancy Eustis, recently published an article on developing CD-PAS programs using ISOs in the Summer/Fall issue of American Rehabilitation and is a frequent speaker on the topic of CD-PAS and ISOs. Ms. Flanagan is also an adjunct assistant professor at Boston University School of Public Health where she teaches the course: Aging, Disability and LTC Finance.

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Ford, Marty*
Assistant Director of Government Affairs
The ARC
1730 K Street, NW, Suite 1212
Washington, DC 20006
phone: (202) 785-3388 ext. 13
fax: (202) 467-4179
e-mail: mfgarc@radix.net
Affiliation: Consumer Advocate


Marty Ford has been the Assistant Director of Government Affairs for The ARC since 1984. Primarily responsible for staffing The ARCs public policy involvement in long term care services and supports (including Medicaid), the supplemental security income program, social security disability issues, and immigration issues. Provides staff support to the legal advocacy and human rights committee which advises The ARC president on involvement and litigation through AMICUS CURAIE Briefs . Serves as co-chair of the Consortium for Citizens with Disabilities (CCD) task forces on long term services and supports and social security. Marty represents The ARC on the Long Term Care Campaign and other relevant coalitions.

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Fowler, LaDonna
Rural Institute on Disability
University of Montana
52 Corbin Hall
West Missoula, MT 59812
Phone: (406) 243-5764
Fax: (406) 883-3817
e-mail: kdwyer@sellway.umt.edu
Affiliation: Research


bio unavailable
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Friss Feinberg, Lynn
Research & Information Manager
Family Caregivers Alliance
690 Market Street, Suite 600
San Francisco, CA 94104
Phone: (415) 434-3388
Fax: (415) 434-3508
e-mail: lfeinberg@caregiver.org
Affiliation: Research


Lynn Friss Feinberg is the Manager of Research and Information Programs at the San Francisco-based Family Caregiver Alliance (FCA), where she oversees FCAs research, policy development, information clearinghouse and technical assistance programs. Serving as the Statewide Resources Consultant to the California Department of Mental Health, she coordinates the cross-site replication of FCAs model, consumer-directed, family support program through a statewide network of 11 non-profit Caregiver Resource Centers (CRCs) serving families and caregivers of cognitively impaired adults. Currently, she serves on the Board of Directors of the American Society on Aging, is a delegate to the National Council on Agings National Institute on Community-Based Long-Term Care; Associate Editor of The Journal of Mental Health and Aging; and a member of the Generations Editorial Board.
Lynn is presently the principal investigator of a research study funded by the Robert Wood Johnson Foundations national initiative, Independent Choices, to examine choice and decision-making in everyday care for cognitively impaired adults and their family caregivers. She has previously published articles on Californias CRC model program, including a study on the preferences for and characteristics of consumer-directed and professionally managed respite for family caregivers.

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Galbraith, Suellen R.
Director for Public Policy
American Network of Community
Options & Resources (ANCOR)
4200 Evergreen Lane, Suite 315
Annandale, VA 22003
Phone: (703) 642-6614
Fax: (703) 642-0497
e-mail: suellenancor@radix.net
Affiliation: Policy


bio unavailable
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Garner, Constance
Senior Disability Policy Advisor
Senator Edward Kennedy/
Labor & Human Resources Committee
9452 Wooded Glen Ave.
Burke, VA 22015
Phone: (202) 224-4543
Affiliation: Policy/Legislator


bio unavalable
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Gennaro, Mary
Director of Federal- State Relations
National Association of Developmental Disabilities Council
1234 Massachusetts Ave, NW,
Suite 103
Washington, DC 20005
Phone: (202) 347-1234 ext. 4
Fax: (202) 347-4023
e-mail: mgennaro@igc.apc.org
Affiliation: Consumer Advocate


bio unavailable
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Gold, Stephen*
Public Interest Law Center
125 South 9th Street, Suite 700
Philadelphia, PA 19107
Phone: (215) 627-3183
e-mail: sfgold@compuserve.com
Affiliation: Litigator


Stephen F. Gold is an attorney who specializes in the civil rights and represents only persons with disabilities. Besides representing numerous individuals with disabilities in discrimination lawsuits, he also represents ADAPT and NOT DEAD YET. Mr. Gold successfully brought the curb cut lawsuit, Kinney v. Yerusalem, arguing that whenever a municipality resurfaces a street, it must ensure access to that street by installing curb cuts. As a result of this lawsuit, communities will become fully accessible.
He also successfully argued the case, Helen L., that a state discriminates against a person by requiring them to receive services in a segregated nursing home, rather than providing them services in the community. This lawsuit established the legal principle that persons with disabilities are entitled to receive services in the most integrated setting appropriate to their needs and the failure to provide those services was discriminatory. As a result of this lawsuit, advocates can help people in nursing homes live in the communities with personal assistance services.
Mr. Gold is currently litigating a national action ADAPT v. HUD on behalf of numerous national organizations, including ADAPT and NCIL. This lawsuit argues that HUD has failed to enforce the requirements of the Rehabilitation Act of 1973 and the Federal Fair Housing Act of 1988 which require that local public entities, receiving federal financial assistance, construct and rehabilitate both rental and home ownership dwelling units so that 5 percent of these dwelling units be accessible for persons with mobility disabilities and one percent for persons with visual and hearing disabilities. HUD has failed to enforce these requirements since 1988. He also wrote the amicus brief for NOT DEAD YET and ADAPT in the Physician-Assisted suicide case before the United States Supreme Court, arguing that people with severe disabilities are discriminated against because physicians do not require the same suicide prevention procedures for persons with and without disabilities. The brief argues that physician-assisted suicide will discriminate as long as physicians do not value people with severe disabilities.

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Goldstein, Marcie
Disability Specialist
Educational Services, Inc.
1150 Connecticut Ave. Suite 1100
Washington, DC 20036
Phone: (202) 628-8080
Fax: (202) 626-3812
e-mail: marcieg@esilsg.org
Affiliation:Self Advocate


bio unavailable
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Hackett Patti
Associate Director
Institute for Child Health
Policy (ICHP)
5700 SW 34th St. Suite 323
Gainesville, FL 32608-5367
phone:(888)-433-1851x.241
email: ph8@ichp.edu
Affiliation: Researcher/University


Ms. Hackett serves as Associate for Youth Policy at the MCHB funded Center for Policy and Partnerships at the Institute for Child Health Policy (ICHP). For a decade she was a teacher in regular and special education and was a project director of a post-secondary OSEP funded technical training program that served adults who were physically disabled. As a parent of an adult son with special needs, she has served as a consumer representative on national boards, and presented opening testimony at the first forum Conversations on Health convened by Mrs. Hillary Clinton.
A proponent of self-sufficiency and financial independence for youth who have a disability or chronic illness, Ms. Hackett has been quite vocal to Federal Agencies in raising awareness for support services required by students who have been protected under Federal statue 504 that will assist them in obtaining and maintaining employment. In her position at the Institute she provides technical assistance to the MCHB funded Healthy and Ready to Work (HRTW) Projects and coordinates the Federal HRTW Interagency Workgroup.

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Hafner, Gayle
OSI Community Fellow
Maryland ADAPT
234 Lord Byron Lane
Texas,. MD 21030
phone:410-539-5340 x2920
e-mail: magaylehafner@mdlab.org
fax:410-666-5080
Primnary Affiliation: Litigator


I have been a poverty/child welfare public interest lawyer for 19 years, a state ALJ for 1.5 years and a disability civil rights activist for 4 years. I have worked on passage of H.R. 2020, state work groups for Section 1915(c) waivers, P.A. regulations revisions, OLMSTEAD organizing (Marlyand was the first to come off), and a PAS user for 1 year.
My greatest contribution to PAS has been my work with the state focused consumers to bring the national resources in view and my work on MICASSA II.

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Hallock, Anne*
Project Manager
Cash and Counseling Demonstration
161 Delaware Avenue
Delmar, NY 12054
Phone: (518) 478-1022
e-mail: abh01@health.state.ny.us
Affiliation: Program Administration


Annes first involvement with personal assistance service was as a summer worker for an elderly friend of her family. As a home economist for Cooperative Extension, she trained staff in the mid-60s for a newly established Title XVIII certified home health agency. In 1966, she came to the New York State Department of Social Services where she developed educational materials for homemakers and housekeepers. In the mid-70s Anne was assigned responsibility for policy direction for all Title XX funded home care services. From the early 80s to 1996 she was responsible for directing the Title XIX funded personal care program. In 1996 she began work on New Yorks Cash Counseling Project which has not been implemented due to a variety of issues.
Of all my accomplishments, I am most proud of the role I played in the development of the State mandated Consumer Directed Personal Assistance Program.

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Harvey, Jeanette*
1050 North Taylor Street #710
Arlington, VA 22201
Phone: (800) 872-5827
e-mail: jehgrh@aol.com
Affiliation: Consumer Advocate


Jeanette Harvey served as national director of United Cerebral Palsy. She designed the only disability studies graduate program in a school of business in the country, integrating the first mandatory courses in a Global Perspective on the Economics and Culture of Disability, Disability Policy, and Disability Related Service systems within the context of a management degree at the University of San Francisco. The Executive Master of Management and Disability Services within McLaren School of Business increased recruitment of people with disabilities and minorities to one in every three students admitted for graduate studies in a two year period.
Ms. Harvey has extensive international work, teaching in Central Europe on management, independent living principles and strategic planning. She is a professional speaker, primarily addressing for profit corporations. She was on the board of the Disability Rights and Education Defense Fund.
Ms. Harvey has been working on issues such as adequate compensation, quality training and certification of personal assistance as a profession. She thinks major marketing about PAS needs to take place since few employers, county, state or federal governments understand personal assistance as a mainstream, non medical profession. Moving to Washington, DC last year required three ads in the Washington Post, 26 interviews and 9 months before a reliable, competent person who did not perceive of PAS as home health care could be employed, said Ms. Harvey.

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Heinritz-Cantebury, Janet
Consultant
Coalitions & Advocacy Consultant
1940 S. Granville Avenue
Los Angeles, CA 90025
Phone: (310) 445-1424
Fax: (310) 445-9594
e-mail: weaver1245@aol.com
Affiliation: Service Provision


Janets work around PAS includes work to increase funding for In-Home Supportive Services (IHSS), Californias publicly funded personal assistance program, and to promote the creation of county based agencies, governed by a consumer majority boards and creating an employer of record for IHSS providers. The most exciting, rewarding and frustrating aspect of my work has been the coalition building required to win enactment of legislation and creation of a public authority.
Janets greatest contribution has been to build relationships between consumers, providers and advocates around PAS issues.

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Helfer, Bryna
Director
Traumatic Brain Injury /
Technical Assistance Center
8737 Colesville Rd. #950
Silver Spane, MD 20910
Phone: (301) 650-8061
Fax: (301) 650-8045
e-mail: bhelfer@emsnr.com
Affiliation: Program Administration


bio unavailable
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Heumann, Judy*
Assistant Secretary
US Department of Education
330 C Street, SW, Suite 3006
Washington, DC 20202
Phone: (202) 205-5465
Affiliation: Program Administration


As Assistant Secretary of Education for the Office of Special Education and Rehabilitative Services (OSERS) since June, 1993, Judith E. Heumann and her 350-person staff manage the Office of Special Education Programs, the Rehabilitation Services Administration, and the National Institute on Disability and Rehabilitation Research, which have a combined budget of over $7 billion. Together, these units coordinate and fund programs that impact Americas 49 million disabled citizens and directly serve almost 7 million disabled children, youth and adults in virtually every community in America.
As Legislative Assistant to the Chairperson of the Senate Committee on Labor and Public Welfare in 1974, she helped develop legislation that became the Individuals with Disabilities Education Act. In subsequent years, she helped draft the Americans with Disabilities Act, helped develop regulations for Section 504 of the Rehabilitation Act, and helped design federal and state legislation that led to the creation of more than 200 independent living centers nationwide.
Ms Heumanns deep commitment to the goal of building an inclusive society comes from her own experiences. Since having polio at the age of 18 months, Ms Heumann has known discrimination firsthand. She was denied the right to attend a public school until the fourth grade. She was able to begin her career as a teacher in the New York City school system only after she sued the Board of Education, which had refused to give her a teaching position because she uses a wheelchair.
Since being appointed Assistant Secretary of Education, Ms Heumann has revitalized or initiated nationwide programs to assist people with disabilities obtain the knowledge and skills they need to make their individual contributions to society, a goal which is an important part of President Clintons agenda. Ms Heumann has been working with citizens groups across the nation and with virtually every branch of government to make sure that policies and programs designed to meet the goals of education reform and full employment address issues involving disabled people.

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Hillyard, Jack
Executive Director
University of Iowa, Iowa CBO
108 3rd Street, Suite 350
Des Moines, IA 50309
Phone: (515) 283-2310
Fax: (515) 283-2307
e-mail: Jack-hillyard@viowa.edu
Affiliation: Program Adminstrator


Jack L. Hillyard, Executive Director of Iowa Creative Employment Options (Iowa CEO), is responsible for CEOs overall management and leading its statewide activities to help Iowa businesses build capacity to employ persons with disabilities. Iowa CEO is a service of the University of Iowa. His credentials consist of experience in mental health, economic development, systems advocacy, education, staff development and youth.
Iowa Creative Employment Options mission is to strengthen Iowas economy by targeting the human resource needs of businesses through the employment of people with disabilities. Our approach is uniquely sensitive to both the demands of business and the needs of people with disabilities. Iowa Creative Employment Options promotes public policy that encourages a positive return on businesses personnel investment and leads to the economic self-sufficiency for individuals with disabilities. Iowa Creative Employment Options assumed a leadership position in the passage of Iowas Medicaid Buy-In legislation during the 1999 Iowa session. Currently, Iowa CEO has been designated to take a lead role in pursuing the expansion of Personal Assistance Services statewide in the context of promoting employment for persons with disabilities.

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Imparato, Andrew
General Counsel & Director of Policy
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004
Phone: (202) 272-2004
Fax: (202) 272-2022
TDD: (202) 272-2074
e-mail: aimparato@ncd.gov
Affiliation:Policy/Legislator


Andrew Imparato is part of the Blue Ribbon Panel, a legal advocate for a grassroots coalition in Massachusetts, and has also worked in health care reform. He does legal and policy advocacy from both outside and inside the government.

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James, Cathleen (Cassie)
Training and Support Program Manager
Liberty Resources
1341 N. Delaware Ave., Suite 105
Philadelphia, PA 19125
Phone: (215) 634-2000 ext. 273
Fax: (215) 634-6625
TDD: (215) 634-6630
e-mail: cjames@libertynet.org
Affiliation:Advocate


Cassie James has been active in the Disability Rights movement for 20 years. She has been involved with Disabled In Action, which founded Resources for Living Independently (now called Liberty Resources, Inc.). Currently she is part of the management team at the CIL. She is also a national leader of ADAPT and was instrumental in the development of MiCASA. At the state level, she organized a sleepover with other Pennsylvanian ADAPTers that ended the waiting list and started the implementation of a consumer-controlled Medicaid waiver.

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Johnson, Dan
Director
Office for Persons with Physical Disabilities
Wisconsin Health & Family Services
1 W. Wilson St., Room 450
Madison WI 53702
phone:(608) 267-9582
fax:(608) 267-3203
e-mail: johndc@dhfs.state.wi.us
Affiliation: Program Admin


bio unavailable
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Johnson, Mark*
Outreach Manager
Shepherd Center
2020 Peachtree Road NW
Atlanta, GA 30309-1402
Phone: (404) 350-7490
Fax: (404) 350-7341
e-mail: mark_johnson@shepherd.org
Affiliation: Consumer Advocate


If I had to list an accomplishment, itd probably be, I've managed to work, entered into many a inter-dependent relationship, stayed out of an institution, and not gone broke paying for PAS.

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Johnson, Mary*
Editor
Ragged Edge Magazine
339 S. Bayly Ave.
Louisville, KY 40206
Phone: (502) 894-9492
TDD: (502) 899-9261
Fax: (502) 899-9562
e-mail: editor@ragged-edge-mag.com
Affiliation: Media


Mary Johnson has covered the issue of PAS for nearly 20 years as the editor of the Ragged Edge Magazine. She has written about grassroots efforts across the nation to set up local programs and has reported on the push by ADAPT to get in-home services funding. She has also covered some of the deeper issues and feelings of people who need and seek consumer-control of their daily assistance. Her reporting has covered most aspects of this issue, from the personal to the political, from the local to the national.

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Jones, Cyndi*
Director ASAP
Mainstream Magazine
2980 Beech Street
San Diego, CA 92102
Phone: (619) 234-3138
e-mail: publisher@mainstream-mag.com
Affiliation: Media/PR


As Publisher of Mainstream Magazine since 1982, Cyndi Jones has been actively concerned about the broad need for personal assistance services for persons with disabilities. PAS has been a continuing theme in the magazine's coverage of the lifestyles and advocacy efforts of persons with disabilities in America. Now as Director of the NIDRR-funded Center for an Accessible Society, Cyndi Jones is committed to spreading the news about PAS and other independent living issues to persons with disabilities through the popular mass media. Stay tuned to your local media.

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Kafka, Bob*
Organizer
The Institute for Disability Access
1339 Lamar SQ Dr. #101
Austin, TX 78704
Phone: (512) 442-0252
Fax: (512) 442-0522
e-mail: bkafka@juno.com
Affiliation: Consumer Advocate


Bob Kafka is involved in advocacy and organizing for disability rights. His greatest contribution to PAS was breaking his neck.

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Kane, Rosalie
Professor
University of Minnesota
420 Delaware Street, SE
Box 197 Mayo Bldg.
Minneapolis, MN 55455
Phone: (612) 624-5171
Fax: (612) 624-5434
email: kanex002@tc.umn.edu
Affiliation: Research


bio unavailable
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Kaplan, Deborah*
Executive Director
World Institute on Disability
510 Sixteenth Street, Suite 100
Oakland, CA 94612-1500
Phone: (510) 763-4100
Fax: (510) 763-4109
e-mail: dkaplan@wid.org
Affiliation: Policy


Deborah Kaplan, JD is Executive Director of the World Institute on Disability and Co-Principal Investigator of the RRTC-ILDP. The Center benefits from Ms. Kaplan's years of involvement in a wide variety of disability policy initiatives. She received a law degree from Boalt Hall at the University of California at Berkeley in 1976. After that, she founded the Disability Rights Center in Washington, DC with support from Ralph Nader. Ms. Kaplan has also served as staff attorney at the Disability Rights and Defense Fund and has worked in private practice.
Most recently, she was Vice President for West Coast Operations for Issue Dynamics, Inc., a consulting firm. Ms. Kaplan has served on a variety of boards including the National Governing Board of Common Cause and the American Bar Associations Commission on Disability Law. She currently is a member of Pacific Bells Advisory Group for Persons with Disabilities and is the President of the Board of the Center for the Common Good in Oakland.

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Katz, Marsha Rose
Organizational Consultant
Rural Institute on Disability
ADAPT/ Montana
Not Dead Yet/ Montana
52 Corbin Hall
University of Montana
Missoula, MT 59812
Phone: (406) 243-2821
Fax: (406) 829-9537
e-mail: ADAPTMT@aol.com


Perhaps the most important thing to know about me is my belief that none of us are free, unless we are all free; and if any one of us is at risk, then we are all at risk. Thus rooted, I have been actively engaged in civil rights since my childhood in Detroit, Michigan. For more than 20 years, that work has included Disability Rights advocacy and activism. While I currently have the pleasure of working with Cary Griffin in the Training Department at the Rural Institute, until the end of 1988, I worked at a local Arc in Michigan which serves all persons with disabilities. In that capacity, I provided training and assistance to consumers and their allies on how to maximize PAS in Michigan, including pushing the envelope to get persons with mental illness included; allow enough time for complex care;and get time included for communication accommodation for persons who use letter boards, FC, other assistive/augmentive communication, or who simply need more time to speak and be understood. In addition to my paid work, and in partnership with my husband, Bob Liston, I am very active in ADAPT (7 years) and am a charter member of NDY.

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Kleinmann, Kathleen
Executive Director
Tri-Co. Patriots Center for
Independent Living
69 East Beau Street
Washington, PA 15301
Phone: (724) 223-5115
TDD: (724) 228-4028
Fax: (724) 223-5119
e-mail: kleinman@tripil.com
Affiliation: Consumer Advocate


Kathleen Kleinmann has worn many different hats in the advocacy for PAS and continues to change hats according to what is needed at the moment, time and place. Her greatest contribution to PAS has been helping to bring together ADAPT and NCIL.

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Kumar, Paul
SEIU
1313 L Street, NW
Washington, DC 20005
Phone: (800) 424-8592
Fax: (212) 767-1744
Affiliation: Research


bio unavailable
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Laird, Pat
US Department of Health
& Human Service.
200 Independence Avenue, SW
Washington, DC 20201
Phone: (202) 690-7447
Fax: (202) 690-6904
Affiliation: Program Administrator


bio unavailable
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Lancaster, John
Executive Director
PresidentsÕ Committee on Employment/PWD
1331 F Street, NW, 3rd floor
Washington, DC 20004-1107
Phone: (202) 376-6200 ext. 18
Fax: (202) 376-6219
e-mail: lancaster-john@pcepd.gov
Affiliation: Policy/Legislator


John Lancaster is Executive Director of the Presidents Committee on Employment of People with Disabilities. He was appointed to this position on August 1, 1995 by Tony Coelho, chairman of the Committee. The President's Committee is an independent federal agency. It promotes a public-private partnership of national and state organizations and individuals working together to improve the lives of people with disabilities by increasing their opportunities for employment.
A civil rights attorney and long-time advocate for disability rights, Lancaster previously served with the Presidents Committee as special assistant to former chairman Justin Dart and the current chairman until July 1994. From 1994 to 1995 he was a consultant on ADA and international disability issues.
A disabled Marine Corps veteran who sustained a spinal-cord injury during combat in Vietnam, Lancaster began his career in public service in 1974 as staff legal advisor at the Board of Veterans Appeals in Washington, DC He later joined the Paralyzed Veterans of America as deputy national service director, where he established the PVA advocacy program to promote the rights of all people with disabilities.
Lancaster also served as executive director of Marylands Governor's Office on Individuals with Disabilities, where he initiated the de-institutionalization of people with disabilities and reformed the state's election policies by working with local election boards to provide access to voters with disabilities.

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Litvak, Simi*
Senior Research and Policy Analyst
World Institute on Disability
510 16th Street, Suite 100
Oakland, CA 94612
Phone: (510) 763-4109
Fax: (510) 251-4109
e-mail: simi@wid.org
Affiliation: Research


Simi Litvak is Senior Researcher and Policy Analyst at the World Institute on Disability (WID). Formerly the Director of WID's Rehabilitation Research and Training Center on Personal Assistance Services (PAS) and the Rehabilitation Research and Training Center on Independent Living and Disability Policy (ILDP), Dr. Litvak has completed research in the area of independent living and is a nationally known expert in independent living, personal assistance services, and health care reform as it impacts people with disabilities. Over the past 14 years, she has contributed to juried and non-juried journals, consumer publications, edited books and publications on the subject of PAS and has provided technical assistance to states on PAS program design, trained advocates at national and state conferences, presented to policy makers and professionals working with various disability populations, and undergraduate and graduate students, offered technical assistance to government and industry, and provided leadership in ideological and PAS system change.
Dr. Litvak received both a doctorate in Rehabilitation Counselor Education and a masters in Rehabilitation Facilities Administration from the University of Wisconsin, Madison. She is also an Occupational Therapist and has over thirty years experience in the disability field as a teacher, researcher, policy analyst, policy maker, and rehabilitation professional. She served as a member of President Clintons Health Care Reform Task Force on the Long-term Services Working Group and NIDRRs 1997-98 Long Range Planning Committee.

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Mahoney, Kevin J.*
Director
University of Maryland
Center on Aging
1240 HHP Building
College, MD 20742
Phone: (301) 405-2549
Fax: (301) 314-2025
e-mail: km110@umail.umd.edu
Affiliation: Research/University


Kevin J. Mahoney, Ph.D is the National Program Director for the Cash and Counseling Demonstration and Evaluation. He is based at the University of Maryland. As the cost of long-term care continues to rise, policymakers and others are seeking new ways to control costs while maintaining or increasing customer satisfaction. Currently, there is increasing interest among the aging and disability communities in models of consumer-directed health care. Among them is Cash and Counseling in which cash allowance, coupled with information services, are paid directly to disabled persons allowing them to arrange and purchase the services they feel best meet their needs. The Cash and Counseling Program consists of demonstrations and evaluations of programs in four states: Arkansas, Florida, New Jersey, and New York. The purpose is to evaluate, using a true experimental design, the impact of permitting consumers to take on the responsibility of managing a cash allowance and arranging their own services.

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Mathieu, Jacob
Assistant Program Director
Concepts of Independence
120 Wall St. Suite 1010
NY, NY 10005
Phone: 212-293-9999
Fax: 212-293-3040
Affiliation: Program Administration


Jacob Mathieu has been the Assistant Director of Concepts of Independence since 1980. Concepts of Independence has a budget of over $30 million serving over 800 consumers and working with over 1500 Personal Assistants. The program differs from many other organizations in that it is consumer directed. The consumers are responsible for the hiring, screening, training and termination of their Personal Assistants.

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Mathis, Cristina
Project Director
University of Iowa
814 N. Court St
Ottumwa, IA 52501
Phone: 515-684-8983
Fax: 515-283-2307
e-mail: cmathis@willinet.net
Affiliation: Consumer Advocate


As President of the Systems Change Network, a state wide grassroots organization, I led the effort to establish a statewide personal assistance services program in Iowa. Those efforts resulted in the establishment of a state-funded PAS pilot project in three Iowa counties as well as the establishment of the Children At Home Program which provides supports to families to enable them to support and care for children with disabilities
at home. I served on the Council that created a program design and implementation guidelines for PAS in Iowa. Unfortunately, the PAS program has remained in the pilot stage and has never been fully implemented on a statewide basis. Now that Iowa has passed legislation for Medicaid Buy-In, the prospects for establishing a statewide program are improving. In September, I will be convening a core group of key legislators, advocates, PAS-users, and state agency administrators to develop a strategic plan for moving PAS forward in our state. Cristinas greatest contribution to PAS has been establishing a PAS pilot project in Iowa which is state funded

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Mathis, Jennifer
Staff Attorney
Bazelon Center for
Mental Health Law
1101 15th Street, NW
Suite 1212
Washington, DC 20005-5002
Phone: (202) 467-5730 ext. 51
e-mail: jenniferm@bazelon.org
Affiliation: Litigatr


Jennifer Mathis is a staff attorney at the Bazelon Center for Mental Health Law. The Bazelon Center is a nonprofit legal advocacy organization that advocates for the rights of individuals with mental illness and mental retardation. The Bazelon Center has participated in litigation to address discrimination against individuals with mental disabilities in the provision of personal assistance services. In addition, the Center has advocated to increase the availability of personal assistance services and other community-based services through deinstitutionalization litigation. The Center has also engaged in legislative advocacy to expand personal assistance services. Before joining the Bazelon Center, Jennifer worked at the Disabilities Law Project in Pennsylvania,

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McCovey, Jene
Board Member
American Indian Voices
1091- A Hallen Dr.
Arcata, CA 95521
Phone: (707) 822-4233
Fax: (707) 822-4233
Affiliation: Consumer Advocate


Jene McCovey has been the president of the advisory board to ILC for the past year and a half. She has been a quadriplegic for 19 years and has trained many caregivers.

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McKay, Hunter*
Policy Analyst
ASPE
200 Independence Avenue
SW, 424 E
Washington, DC 20201
Phone: (202) 690-6443
e-mail: hmckay@osaspe.dhhs.gov
Affiliation: Reasearch


More than fifteen years experience working on Medicaid and health care issues. Specialize in long term care and aging policy. Currently with The U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation: Division of Aging and Long Term Care Policy. Previous employment includes The Center on Aging, University of Maryland, The Massachusetts Executive Office of Human Services, and Blue Cross and Blue Shield of Massachusetts.

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Miller, Nancy
Professor
University of Baltimore
Policy Science Department
UMBC 1000
Baltimore, MD 21250
Phone: (410) 455-3201
Affiliation: Research


bio unavailable
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Mona, Linda
Research Associate
World Institute on Disability
510 16th Street, Suite 100
Oakland, CA 94612
Phone: (510) 251-4333
Fax: (510) 763-4100
Affiliation: Research


Linda Mona, Ph.D. has worked as a Research Associate for the World Institute on Disability in the Research and Training Centers on Independent Living and Disability Policy and Personal Assistance Services for the past 10 months. Within the RRTC -ILDP, she has worked on projects related to healthcare, transportation, the Community yardstick and participatory action research. Trained in clinical psychology, Dr. Mona has worked in a variety of settings conducting both clinical work and research. Dr. Mona has worked closely with the American Psychological Association around the inclusion of disability within the psychology field as a whole. She has advocated for the inclusion of disability status in university diversity curriculum and has been the energy behind positive changes for university students with disabilities at both the administrative and service levels. Dr. Mona has received national recognition by the Association on Higher Education and Disability, the American Psychological Association, and the Society for the Scientific Study of Sexuality for her research and service-related work focusing upon persons with physical disabilities. Furthermore, Dr. Mona has published her work in a variety of academic-related publications.

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Moore, Theresa
Community Advocate
People First of Arizona
11226 S. Bannock Street
Phoenix, AZ 85044
Phone: (800) 280-2245
Fax: (602) 254-6407
e-mail: tmoretime@juno.com
Affiliation: Self Advocate


bio unavailable
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Myers, Bern
Executive Director
Barrier Free Futures, Inc.
P.O. Box 4495
Santa Fe, NM 87502
Phone: (505) 473-0122
Fax: (505)827-6328
e-mail: 73547.517@compuserve.com
Affiliation: Cosumer Advocate


Bern Myers is currently the director of a 501-C-3 advocacy organization. Prior to that he served as a staff attorney for several state agencies for 20 years. He has volunteered his time with the state committee on concerns of persons with disabilities, which is directed by his wife. Together they have drafted a number of legislative and regulatory changes improving disability rights and have seen some implemented. Most relevant is an amendment to the states nurse practice act allowing non-licensed persons to provide PAS in 1986 and a consumer direction act, requiring the state to provide fiscal agent assistance allowing clients to hire their own attendants under our Medicaid and waiver program that was, unfortunately vetoed.

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Nelson, John
Independent Living Branch Chief
Rehabilitation Services Administration
330 C Street, SW, #3326
Washington, DC 20202-2741
Phone: (202) 205-9362
Fax: (202) 260-9424
e-mail: john_nelson@ed.gov
Affiliation: Program Administration


John Nelson has been involved with the PAS Task Force from HHS, the Federal Inter-agency task force, attending ADAPT DC-based activities, and disseminating information about PAS.

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Ogle, Rebecca
Executive Director
Presidential Task Force on
Employment of Adults
with Disabilities
U.S. Department of Labor
200 Constitution Ave., N.W.
Room- S-2312
Washington, DC 20210
Phone: (202) 219-6081
Fax: (202) 219-9216
TDD: (202) 219-0012
e-mail: ogle-becky@dol.gov
Affiliation: Programn Administration


bio unavailable
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Oxford, Mike*
Executive Director
Topeka Independent Living
Resource Center
501 SW Jackson, Suite 100
Topeka, KS 66603-3300
Phone: (785) 233-4572
Fax: (785) 233-1561
Affiliation: Consumer Advocate

bio unavailable
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Page, Lee*
Associate Advocacy Director
Paralyzed Veterans of America
801 18th Street, NW
Washington, DC 20006
Phone: (202) 416-7694
Fax: (202) 416-7706
e-mail: leep@pva.org
Affiliation: Consumer Advocate


Lee Page has advocated for the passage of PAS legislation and participated in the CCD 1992 PAS Task Force. He works with the Long Term Care Campaign and is the associate advocacy director for PVA.

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Parish, Susan*
Resource and Policy Analyst
University of Illinois at Chicago
1640 W. Roosevelt Road
Chicago, IL 60608
Phone: (312) 413-1431
Fax: (312) 413-1326
e-mail: sparish@uci.edu
Affiliation: Research


Susan Parish is resource and policy analyst for the State of the States in Developmental Disabilities project and a doctoral student in public health at the University of Illinois at Chicago. Ms. Parish has ten years experience in the administration of community-based residential and family support services for people with developmental disabilities and their families, in New York and New Jersey.
Ms. Parish has co-written The State of the States in Developmental Disabilities, Fifth Edition (by David Braddock, Richard Hemp, Susan Parish, and James Westrich), which was published in 1998 by the American Association on Mental Retardation. Ms. Parish has contributed to an ongoing program of technical assistance for state agencies, and for consumer, advocacy, and provider organizations in a number of states.

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Parker, Jim
Planner/Director
Governor's Committee on
the Handicapped
491 Old Santa Fe Trail
Lamy Bldg. Room 117
Santa Fe, NM 87501
Phone: (505) 827-6465
Fax: (505) 827-6328
TDD: (505) 827-6329
e-mail:
103203.400@compuserve.com
Affiliation:Policy/Government


This year the cooperative effort has brought about 1) Personal Care Option (New Medicaid); 2) expansion of D&E Waiver (First new money in 4 years); 3) Medicaid buy-in programs. These programs have solid support from all sectors. My greatest contribution to PAS is my involvement with ADAPTs directions of direct-action advocacy coupled with legislative agenda.

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Peluso, Michael
NYS Client Assistant Program
NYS Commission on Quality Care
for Mentally Disabled
401 State Street
Schenectady, NY 12305
Phone: (518) 381-7002
Fax: (518) 381-7095
Affiliation: Consumer Advocate


bio unavailable
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Perry, Alaine*
Policy Analyst
World Institute on Disability
510 Sixteenth Street Suite 100
Oakland, CA 94612-1500
Phone: (510) 763-4100
Fax: (510) 763-4109
TYY: (510) 208-9493
e-mail: alaine@wid.org
Affiliation: Research


Ms. Perry is a Policy Analyst for the World Institute on Disability and co-chair of the National Council on Independent Living's Social Security\Subcommittee. For the past two years she has worked closely with Senate staff providing technical assistance on the development of the Work Incentives Improvement Act. Ms. Perry has a disabling chronic illness and became involved in work incentive reform as a result of her experiences as a Social Security beneficiary. She received her master's degree in Health Policy and Management from the University of California at Berkeley.

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Powers, Laurie E.
Co-Director
Center on Self-Determination
Oregon Institute on Disability and Development
3608 SE Powell Blvd.
Portland, OR 97202
503-232-9154
503-232-6423 [FAX]
e-mail: POWERSL@OHSU.EDU
Affiliation: Research


Laurie Powers is the Co-Director of the Center on Self-Determination at the Oregon Institute on Disability and Development at Oregon Health Sciences University. She has conducted research related to PAS management strategies and PAS abuse and how to stop and prevent it. She also directs a self-determination systems change project in Oregon that is redesigning the developmental disabilities program to enable customers to determine and direct their supports.

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Priauix, Elizabeth
Community Integration Specialist
National Association of Protection and
Advocate Systems (NAPAS)
900 2nd Street, NE, Suite 211
Washington, DC 20002
Phone: (202) 408-9514
Fax: (202) 408-9520
TDD: (202) 408-9521
e-mail: elizabeth@napas.org
Affiliation: Consumer Advocate


Elizabeth Priauix began working as a disability advocate in 1986 as an attorney. For the past three years, Ms. Priauix has provided assistance to P&As related to community integration, with a focus on Medicaid, managed care, and conditions in facilities. She develops teleconferences, trainings, and other technical resources to enhance P&As ability to advance Medicaid law and promote community integration. Prior to working at NAPAS she worked as a policy analyst at the United Cerebral Palsy Association providing technical assistance to UCP affiliates related to funding for assistive technology. Additionally, she worked at the U.S. General Accounting Office preparing a report on the implementation of Title II of the ADA as of 1992 and 1993.
Her greatest contribution to PAS has been informing and training the P&A Network about legal precedents related to: Medicaid coverage of PAS, and the ADA Integration Mandate.

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Richardson, Ethel
Vice Chair
San Francisco In Home
Support Service
Public Authority
398 Haight Street #1
San Francisco, CA 94102
Phone: (415) 252-9711
Affiliation: Service Provision


Ethel Richardson has been part of the organizing efforts in San Francisco for over 6 years. When the Public Authority was established she was nominated to the governing body and she currently is in her second term as vice president of the board. She was a homecare worker for over 20 years and has recently retired. She has taken a leadership role in the campaign to bring better wages and benefits to IHSS workers, testifying at numerous hearings and public events. She was instrumental in the campaign to get health benefits for the 6000 IHSS workers in San Francisco.
She has been a member of Local 250 SEIU for 6 years and was the chair of the organizing committee for 3 years.

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Riggs, Judith*
Director of Public Policy
Alzheimers Association
Public Policy Office
Phone: (202) 393-7737
e-mail: judith.riggs@alz.org
Affiliation: Consumer Advocate


Judy manages the federal and state advocacy program of the Alzheimer's Association, the national voluntary health agency that supports and advocates for 4 million people who have Alzheimer's disease and their families. The Association's policy priorities are health care reform (especially Medicare), long term care with an emphasis on home and community based care and family support, and public funding for Alzheimer research. The Association is a lead organization in the Long Term Care Campaign and an active member of the Leadership Council of Aging Organizations and the National Health Council. Judy has worked on Capitol Hill; lobbied on education, child care, income maintenance and civil rights issues for the Children's Defense Fund; was the first director of government relations for the Legal Services Corporation; and did policy analysis and development work for the Center on Social Welfare Policy and Law. She joined the Alzheimer's Association in 1989 to help open the organization's Washington D.C. office.
Judy holds a Masters Degree in Political Behavior from the University of Michigan. Her mother had Alzheimer's disease.

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Ross, Bill Chico
Chairperson of PA Attendant
Care Advisory Committee
PA Coalition of Citizens
with Disabilities
101 S. Second Street, Suite 4
Harrisburg, PA 17101
Phone: (717) 238-0172
TDD: (717) 238-3433
Fax: (717) 238-8663
Affiliation: Consumer Advocate


Bill Ross is a daily consumer of PAS and lives independently. He is fortunate enough to be able to receive and self-direct his personal assistant services, which enables him to maintain a full-time position at the PA Coalition of Citizens with Disabilities as a Civil Rights Specialist at the state level for people with disabilities in Pennsylvania. He serves on a PAS Taskforce project funded by the Developmental Disabilities Council of PA. He recently became Chairperson of Attendant Care Advisory Committee to the Department of Public Welfare. He is also an active member of ADAPT and fought for the introduction of the Medicaid Community Attendant Services Act (MiCASSA). At one time Bill lived in a nursing home.

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Saviola, Marilyn
Director of Advocacy
Independence Care Systems
257 Park Ave. South, 2nd Floor
New York, NY 10010-7304
Phone: 212-584-2500
Fax: 212-584-2555
Affiliation: Consumer Advocate


Ms. Saviola is currently the Director of Advocacy at Independence Care Systems (ICS). ICS is a Medicaid managed long-term care program for people with physical disabilities. Ms. Saviola was the Executive Director of the Center for Independence of the Disabled in New York(CIDNY) from 1983 through December 1998. Under her leadership, CIDNY became established as a premier independent living center, recognized for its expertise in advocacy and services for people with disabilities. Ms Saviola is recognized as a leader in the area of advocacy for access to health care for people with disabilities. She is also known for her expertise in