Financial Information
1999 Annual Report Summary
UCPA
UNITED CEREBRAL PALSY ASSOCIATIONS, INC.
1999 ANNUAL REPORT SUMMARY
(Fiscal Year October 1, 1998
September 30, 1999)
Executive Office
The national office of UCPA embarked upon a significant new transition in its operations, including the search of a new Executive Director. During the transition period, the Interim Executive Director successfully completed activities including overseeing administration policies and procedures for all staff functions and operations of the association; recommending and participating in the association's mission, goals, objectives and related policies and directing legislative and advocacy activities in line with the mission and goals of UCPA and the UCPA affiliates. The Executive Office organized a transition team which created a blueprint for the association's goals and strategic plan; completed the budget development process for the upcoming fiscal year; developed goals for the management team and acted as a liaison with the UCPA Research and Educational Foundation and affiliates regarding research efforts.
The UCPA Research and Educational Foundation
The UCPA Research and Educational Foundation is the national focal point in the private sector for research and for scientific and clinical information about cerebral palsy and related developmental brain injury. During the past fiscal year, the research program focused on the issues of sub clinical maternal infection serving as a basis for both prematurity and for focal damage to the developing brain; identifying immunological factors in high risk pregnant women that result in fetal brain damage; evaluating the efficacy of a pharmacological intervention for the prevention of osteoporosis in wheelchair bound children; and planning a controlled clinical trial of hyperbaric oxygen therapy for children with disabilities due to cerebral palsy.
In the scientific information area, the Foundation in collaboration with the Little Foundation (GB) organized and conducted a research workshop on neuroprotective agents for the prevention of developmental brain damage; in the clinical area, the Foundation in collaboration with the American Academy of Cerebral Palsy and Developmental Medicine organized and conducted a workshop on the status of information about equinus gait.
Public Policy
In the area of employment, UCPA organized the Consortium for Citizens with Disabilities' Work Incentives Working Group to promote the enactment of improved work incentives legislation during the 106th Congress. The department also mounted a national letter writing campaign urging President Clinton to announce his support for the Work Incentives Improvement Act of 1999 in the State of the Union Speech. UCPA assisted in the writing and development of a new version of S. 331, the Work Incentives
Improvement Act of 1999. UCPA assisted in the writing and development of a new version of HR 1180, the Work Incentives Improvement Act of 1999, and co hosted a national three day conference with the World Institute on Disability to examine ways to promote solutions to the problem of long term services and supports issues.
In the area of children and families, UCPA initiated the creation of a Consortium for Citizens with Disabilities' Child Care Task Force. The public policy department wrote Talking Points for Affiliates and other advocates to use in the development of the new Child Care State Plans required by the Child Care and Development Block Grant, and participated in the development of language for the Family Support section of the Developmental Disabilities' Act.
In technology and telecommunications, UCPA testified at FCC regarding using telephones with AAC devices. UCPA was involved with the Architectural and Transportation Barriers Compliance Board in establishing an Electronic and Information Technology Access Advisory Committee to make recommendations for accessibility standards for electronic and information technology covered by the Rehabilitation Act Amendments of 1998.
In the area of health and wellness, UCPA co chaired the Consortium for Citizens with Disabilities (CCD) Healthcare Working Group that produced a document of recommendations for the Bi partisan Commission on the Future of Medicare, participated in White House conferences on Long term Services and Supports, and drafted a white paper for the National Conference of State Legislators on the State Children's Health Insurance Program (SCHIP) and children with disabilities.
In other areas, UCPA attended and participated in the Disabled Peoples' International 5th World Assembly in Mexico. UCPA attended and participated in the East Coast Regional Summit on Africa. UCPA developed disability policy recommendations in the areas of Education & Culture and Sustainable Development & Quality of Life, which were accepted. UCPA secured delegate status to represent the state of Maryland and the District of Columbia at the National Summit on Africa.
Grants and Contracts
Assistive Technology and Funding Systems Change Project is a six year project with a national scope that provides information and technical assistance to individuals with disabilities and their family members on how to access funding streams to pay for assistive technology services. Through the leadership of project staff, UCP continually affects policy change by ensuring clarification and policy rulings from federal staff, as well as developing resources for families, individuals and professionals in the field. The project coordinated a national conference on the development of microloans as a funding alternative for the purchase of assistive technology.
The Employment Portfolio project is developing a visual portfolio of skills, interests and experiences of persons with significant disabilities to assist them in developing relationships with potential employers and communicating their ability to work.
The Southeast Disability and Business Technical Assistance Center is a five year grant to provide information, training and technical assistance on all aspects of the Americans with Disabilities Act to individuals, organizations, businesses and industry.
The Family Center on Technology and Disability is a five year project to provide information and resources to organizations that serve families with children with disabilities. Through an interactive, Internet-based database, conference participation, and a national network, the Family Center ensures that high quality information reaches a wide range of organizations.
Tech Connections provides resources, training and technical assistance to vocational rehabilitation counselors, individuals and other professionals to ensure that appropriate assistive technology is obtained and used by individuals with disabilities.
Access AmeriCorps is a training and technical assistance project for AmeriCorps state commissions and programs to increase the number of individuals with disabilities who participate in national and community service activities.
Communications
Communications continued work to enhance name recognition through development of a public education campaign with a strategic plan including planning with the UCPA Board of Directors, national staff, and UCPA affiliate members, plan adoption and plan implementation. The public education campaign was developed in conjunction with national agency Young and Rubicam and branding agency Landor Associates. Areas targeted by the public education campaign included Web site initiatives, branding initiatives, corporate partnership, and media material. Material in development included a new logo and tagline, a new Web site, new television and radio public service announcements, new print ads, and a media tool kit complete with public relations stories.
Further development of the UCP Web site enabled the site to act as a resource center for individuals and families. The site offered content regarding the research, advocacy, program, service delivery, and marketing work of UCPA, as well as legislative updates, information provision to the general public regarding cerebral palsy and other disabilities, grants and contracts opportunities, links, references, and discussion areas.
The UCPA Information and Referral Service responded to over 6,000 inquiries received via telephone, fax, mail, and e-mail from parents, individuals with disabilities, for profit and other non profit organizations and agencies. Inquiries covered a wide variety of issues ranging from general information on cerebral palsy to funding for assistive technology, transportation, and accessible housing.
The Basic Bookshelf program offered reading recommendations and fulfillment on a wide variety of disability related topics.
Marketing
New television initiatives in creating telethon modules/vignettes supported those affiliates who produce a local Starfest telethon. UCPA collaborated with the American Academy for Cerebral Palsy and Developmental Medicine to produce a segment which aired on CNBC's Healthy Solutions.
Cablevision was added as a new sponsor to help develop and place programming to help change the way that people view people with disabilities. An agreement was reached with Greyhound to act as a strategic advisor on disability issues.
- Planned Giving manual was produced and distributed to affiliates.
- Development Conference, held in October, helped reinvigorate marketing, communications, sponsorship issues and development issues in the UCPA affiliate family.
National sponsors and partners were HealthSouth Corporation, The Hearst Corporation, Jimmy Dean Foods, Miller Brewing Company, The Pythian Order, TCYB Treats, Tosco Marketing Company/Circle K, Ford Gum & Machine Company, Frank's Nursery & Crafts, and Cablevision.
Affiliate Services
Affiliate Services responded to requests from affiliates through site visits and other means of technical assistance and consultation to achieve objectives for crisis intervention, board development, expansion of territory and dispute resolution issues.
A Web site for volunteers and staff was established. A Mergers and Acquisitions Book was developed for use by existing affiliates.
Affiliate Services served as a resource for new and existing affiliates, including conducting executive director and volunteer training seminars.
Affiliate Services planned and implemented the 1999 UCPA Annual Conference and Meeting which included development of a 501h Anniversary Tribute tape and coordinating all logistics.
Affiliate Services coordinated the Victory 100 program, which recognized volunteers throughout the UCPA network who contributed 100 or more hours of service.
Affifliate Services
Affiliate Services responded to requests from affiliates through site visits and other means of technical assistance and consultation to achieve objectives for crisis intervention, board development, expansion of territory and dispute resolution issues.
A Web site for volunteers and staff was established. A Mergers and Acquisitions Book was developed for use by existing affiliates.
Affiliate Services served as a resource for new and existing affiliates, including conducting executive director and volunteer training seminars.
Affiliate Services planned and implemented the 1999 UCPA Annual Conference and Meeting which included development of a 501h Anniversary Tribute tape and coordinating all logistics.
Affiliate Services coordinated the Victory 100 program, which recognized volunteers throughout the UCPA network who contributed 100 or more hours of service.
Mission and Services Statement
Mission Statement
The mission of UCPA is to advance the independence, productivity, and full citizenship of people with cerebral palsy and other disabilities.
Description of national programs, activities and accomplishments
Research:
Research to support scientific investigations regarding cerebral palsy and related developmental brain injury was provided through the UCPA Research and Educational Foundation. The UCPA Research and Educational Foundation is the national focal point in the private sector for research and for scientific and clinical information about cerebral palsy and related developmental brain injury. During the past fiscal year, the research program focused on the issues of sub clinical maternal infection serving as a basis for both prematurity and for focal damage to the developing brain; identifying immunological factors in high risk pregnant women that result in fetal brain damage; evaluating the efficacy of a pharmacological intervention for the prevention of osteoporosis in wheelchair bound children; and planning a controlled clinical trial of hyperbaric oxygen therapy for children with disabilities due to cerebral palsy.
In the scientific information area, the Foundation in collaboration with the Little Foundation (GB) organized and conducted a research workshop on neuroprotective agents for the prevention of developmental brain damage; in the clinical area, the Foundation in collaboration with the American Academy of Cerebral Palsy and Developmental Medicine organized and conducted a workshop on the status of information about equinus gait.
Public Health education
UCPA informed the general public regarding disabilities through grants and contract activities which focused on providing and disseminating information and training regarding assistive technology, employment, and education.
In Marketing and Communications, through the UCPA web site and through Information and Referral * Services, UCPA enabled the sharing of information regarding cerebral palsy and other disabilities, and responded to inquiries regarding cerebral palsy and other disabilities. Dissemination of the UCPA name and mission occurred through Marketing and Communications television activities and work with national sponsors. New television initiatives in creating telethon modules/vignettes supported those affiliates who produce a local Starfest telethon. UCPA collaborated with the American Academy for Cerebral Palsy and Developmental Medicine to produce a segment for CNBC's Healthy
Solutions. Achieving a strategic plan for UCPA branding initiatives helped direct the UCPA marketing focus for moving into the next millennium.
In addition, Cablevision was added as a new sponsor to help develop and place programming to help change the way that people view people with disabilities. An agreement was reached with Greyhound to act as a strategic advisor on disability issues.
UCPA advocacy efforts advanced issues regarding cerebral palsy and other disabilities through focusing on advancing the independence of people with disabilities. In the area of employment, UCPA organized the Consortium for Citizens with Disabilities' Work Incentives Working Group to promote the enactment of improved work incentives legislation during the 106th Congress. The department also mounted a national letter writing campaign urging President Clinton to announce his support for the Work Incentives Improvement Act of 1999 in the State of the Union Speech. UCPA assisted in the writing and development of a new version of S. 331, the Work Incentives Improvement Act of 1999. UCPA assisted in the writing and development of a new version of HR. 1180, the Work Incentives Improvement Act of 1999, and co hosted a national three day conference with the World Institute on Disability to examine ways to promote solutions to the problem of long term services and supports issues.
In the area of children and families, UCPA initiated the creation of a Consortium for Citizens with Disabilities' Child Care Task Force. The public policy department wrote Talking Points for Affiliates and other advocates to use in the development of the new Child Care State Plans required by the Child Care and Development Block Grant, and participated in the development of language for the Family Support section of the Developmental Disabilities' Act.
In technology and telecommunications, UCPA testified at FCC regarding using telephones with AAC devices. UCPA was involved with the Architectural and Transportation Barriers Compliance Board in establishing and Electronic and Information Technology Access Advisory Committee to make recommendations for accessibility standards for electronic and information technology covered by the Rehabilitation Act Amendments of 1998.
In the area of health and wellness, UCPA co chaired the Consortium for Citizens with Disabilities (CCD) Healthcare Working Group that produced a document of recommendations for the Bi partisan Commission on the Future of Medicare, participated in White House conferences on Long term Services and Supports, and drafted a white paper for the National Conference of State Legislators on the State Children's Health Insurance Program (SCHIP) and children with disabilities.
In other areas, UCPA attended and participated in the Disabled Peoples' International 5th World Assembly in Mexico. UCPA attended and participated in the East Coast Regional Summit on Africa. Developed disability policy recommendations in the areas of Education & Culture and Sustainable Development & Quality of Life, which were
accepted. Secured delegate status to represent the state of Maryland and the District of Columbia at the National Summit on Africa.
Professional Health Education
Through the Web site, Information and Referral, grants and contracts, the UCPA Research and Educational Foundation, advocacy work, and support of the programs and services provided by the UCPA affiliate family, UCPA supported a number of programs to inform and provide services for health professionals, parents, and care givers of people with disabilities regarding disability and disability health related issues.
Through grants and contracts, UCPA conducted programs and activities designed to improve the knowledge, skills and critical judgement of professionals engaged in health related work. The Assistive Technology and Funding Systems Change Project is a six-year project with a national scope that provides information and technical assistance to individuals with disabilities and their family members on how to access funding streams to pay for assistive technology services. Through the leadership of project staff, UCPA continually affects policy change by ensuring clarification and policy rulings from federal staff, as well as developing resources for families, individuals and professionals in the field. Most recently, the project coordinated a national conference on the development of microloans as a funding alternative for the purchase of assistive technology.
The Employment Portfolio project is developing a visual portfolio of skills, interests and experiences of persons with significant disabilities to assist them in developing relationships with potential employers and communicating their ability to work.
The Southeast Disability and Business Technical Assistance Center is a five-year grant to provide information, training and technical assistance on all aspects of the Americans with Disabilities Act to individuals, organizations, businesses and industry.
The Family Center on Technology and Disability is a five year project to provide information and resources to organizations that serve families with children with disabilities. Through an interactive, Internet-based database, conference participation, and a national network, the Family Center ensures that high quality information reaches a wide range of organizations.
Tech Connections provides resources, training and technical assistance to vocational rehabilitation counselors, individuals and other professionals to ensure that appropriate assistive technology is obtained and used by individuals with disabilities.
Access AmeriCorps is a training and technical assistance project for AmeriCorps state commissions and programs to increase the number of individuals with disabilities who participate in national and community service activities.
Patient Services:
The daily activities of the UCPA affiliate system nationwide serves people with disabilities and others through the development of state of the art programs, information and referral services, legislative advocacy, technology initiatives and research, and the delivery of a range of direct services tailored to local communities through programs such as assistive technology training, early intervention services, individual and family support services, and social and recreation programs. In addition, UCPA provides supported living services, employment assistance, and other supports as needed. The UCPA family serves more than 170,000 children and adults with disabilities a day.
Affiliate Services responded to requests from affiliates through site visits and other means of technical assistance and consultation to achieve objectives for crisis intervention, board development, expansion of territory and dispute resolution issues.
A Web site for volunteers and staff was established. A Mergers and Acquisitions Book was developed for use by existing affiliates.
Community Services:
The daily activities of the UCPA affiliate system nationwide serves people with disabilities and others through the development of state of the art programs, information and referral services, legislative advocacy, technology initiatives and research, and the delivery of a range of direct services tailored to local communities through programs such as assistive technology training, early intervention services, individual and family support services, and social and recreation programs. In addition, UCPA provides supported living services, employment assistance, and other supports as needed. The UCPA family serves more than 170,000 children and adults with disabilities a day.
UCPA Affiliate Services responded to requests from affiliates through site visits and other means of technical assistance and consultation to achieve objectives for crisis intervention, board development, expansion of territory and dispute resolution issues.
A Web site for volunteers and staff was established. A Mergers and Acquisitions Book was developed for use by existing affiliates.