Office on Disability
Brining New Freedom Initiative Alive to Serve Persons with Disabilities - 2005
A Nation in which persons of all ages with, or at risk for a disability of any kind, have the individualized services and supports they need to lead a fulfilling life, contributing to the vitality and diversity of their communities.
To coordinate and oversee work within the U.S. Department of Health and Human Services, with other Federal Departments, and with public and private partners at the Federal, State, and community levels to advocate for, educate about, and advance effective practices and programs that promote a full life in the community for persons with disabilities.
With President Bush’s New Freedom Initiative providing the principles for change, the U.S. Department of Health and Human Services (HHS) Office on Disability (OD) is working to ensure that the remaining barriers to the full integration of people with disabilities into everyday American life are being broken down at the Federal, States, and community levels in employment and education, in housing and transportation, and in health care and the use of adaptive technologies.
Acknowledging the critical role that the 1990 Americans with Disabilities Act (ADA) has played in removing physical and attitudinal barriers faced by the Nation’s 54 million people with disabilities, President Bush recognized that more work needed to be done. In 2001, too many persons with disabilities still remained outside looking in on meaningful employment, home ownership, educational opportunity, the power and promise of technology, and productive lives in their home communities. He launched the New Freedom Initiative to help ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, make choices about their daily lives and participate fully in community life.
The 2002 Delivering on the Promise, a cross-Department-spanning report, heightened the President’s determination to move the New Freedom Initiative from promise to reality. It identified over 400 solutions to remove barriers to full integration that exist in Federal programs affecting people with disabilities, To leverage HHS resources and to promote cross-government collaboration at the highest levels, the HHS Office on Disability was established within the Office of the Secretary in mid-2002. Margaret J. Giannini, M.D., F.A.A.P. was tapped to head the office, a physician whose stellar career has been in the service of persons with disabilities, both in government and in the private sector, including her role as the first Director of the National Institute of Handicapped Research, now known as the National Institute of Disability and Rehabilitation Research in the Department of Education.
The Office was charged with the responsibility to: (a) Lead the HHS New Freedom Initiative; (b) Oversee, coordinate, develop and implement disability programs and initiatives within HHS that impact people with disabilities; (c) Ensure that persons with disabilities across the lifespan have a voice within HHS; and (d) Heighten the interaction of programs within HHS and with Federal, State, community and private sector partners.
Since its establishment, the Office on Disability has used its convening power to help meet the community integration needs of persons with disabilities, assuring that both the solutions Delivering on the Promise, and the expectations for the Office on Disability not only can be but also are being met. A small office with a big responsibility and an equally big heart, the Office on Disability has leveraged its own resources as well, building on its staff of three through creative use of detailees, interns, and other personnel “on loan” from academic institutions, to achieve far more than otherwise possible.Moreover, by providing a voice for persons with disabilities within HHS; coordinating Freedom Initiative from Promise to reality. It programs and initiatives related to disability issues within HHS; and reaching out to federal, state, tribal, community, and private sector partners, the Office on Disability not only has been able further to leverage public and private resources to their optimum across service sectors, but also has been enabling America realize the promise of the President’s New Freedom Initiative for 54 million persons with disabilities of all kinds living everyone across the United States.
Value of Convening Power
The convening power of the HHS Office on Disability has resulted in growing cross-Department and public-private partnerships that are working to open doors, both literally and figuratively, for persons with disabilities. Critically, it also has brought persons with disabilities to the table, giving them both voice and a central resource within HHS and with its partner Departments (Labor, Transportation, Education, Justice, Housing and Urban Development, Veterans Affairs, Commerce, Interior, Treasury, Homeland Security, and the Social Security Administration).
The OD has both coordinated and brought consistency to how HHS implements the principles of the New Freedom Initiative. It also has served as a linchpin in promoting disability-related policy, program and progress together across levels of government, with the private sector, and in communities nationwide.
The work of the Office on Disability has been guided by a vision, a mission, and a strategic action plan, all of which have been built largely from recommendations made by persons with disabilities of all kinds. Their voices, issues, concerns, suggestions, and support continue to be heard as the strategic action plan evolves over time. The vast majority of the Office’s work to bridge federal programs, to engage at the state and local levels, and to build partnerships with private sector organizations, businesses and programs has occurred as a direct result of its mission and the valued input of the people the Office serves.
At the same time, however, the Office on Disability is mindful that duplication and overlap only serve to confuse a one-HHS approach to serving persons with disabilities. For that reason, an annual performance management report has been developed to help break down program silos and to leverage programs and dollars to their optimum. This report details concrete data that highlight how HHS funds have been spent for programs related to persons with disabilities in Fiscal Years 2002 and 2003. The 2002-2003 report identifies how all HHS funds for all disabilities have been expended and are now budgeted; it compares these findings with the identified needs of persons with disabilities; and it weighs just how well both dollars and programs support the goals and objectives of the New Freedom Initiative at levels of the community and individual. The Office is in the process of assessing Fiscal Years 2004 and 2005 budget data for submission in a later report.
Guided by its consumer-driven strategic plan, the Office on Disability’s domains of activity span those of the President’s New Freedom Initiative: housing, education, employment, transportation, assistive technology, and community integration. A seventh domain – health – was added, since, the health and wellness of persons with disabilities extend far beyond their disabilities alone. That seventh domain has been the subject of substantial attention in 2004, with the development of the Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities, that will be released in 2005. The Call to Action’s focus on access to wellness promotion as well as to health care services represents a critical intersection between the work of the OD and the President’s larger Healthier US initiative that is promoting the wellness of all Americans, including those with disabilities.
Supporting the New Freedom Initiative (NFI)
Educating about Disability and the Abilities of Persons with Disabilities
Since its enactment in 1990, the Americans with Disabilities Act (ADA) has helped promote better understanding about the lives, needs, challenges, and triumphs of persons with disabilities. However, President Bush recognized that too many persons with disabilities never achieve access to vast portions of the Nation’s opportunities, despite the requirements of the ADA. The Office on Disability has sought to broaden understanding and awareness of both the contributions and the need of persons with disabilities, celebrating triumphs and pointing the way to new challenges.
- Celebrating Successes of Persons with Disabilitiess: During October’s Disability Awareness Month, the Office on Disability organizes and convenes the Secretary’s Celebration of Persons with Disabilities. At each event, the Secretary’s highest recognition awards are presented to persons (representing businesses, entertainment, providers, media, advocates, elected officials and consumers) for their work on behalf of persons with disabilities.
- Celebrating President Bush’s NFI Executive Order: The FY 2004 celebration of President Bush’s 2001 New Freedom Initiative Executive Order took the form of a conference, Emerging Workforce: Dispelling Myths…It Can Be Done, convened in Florida, February 8 – 10, and cosponsored by with LIFE, INC. (Living Independence for Everyone) and the Florida Family Support Project: Juntos Podemos (Together We Can).
Advancing NFI Objectives and More
- Promoting Affordable, Available Housing Opportunities for Persons with Disabilities: The Office on Disability convened two live webcast housing symposia (2004, 2004), in collaboration with the Department of Housing and Urban Development, Fannie Mae, the Centers for Medicare and Medicaid Services, the National Institutes of Health, the NCB Development Corporation, and the Center for Universal Design at North Carolina State University, providing national disability constituent organizations with a roadmap to help persons with disabilities understand how States, communities, and local constituency organizations can foster homeownership by persons with disabilities and can better ensure attention to universal design and access modification.
In Employment Opportunity
- Promoting Information on Tax Incentives for Employers and Tax Credits for Persons with Disabilities: Working with the Internal Revenue Service and the NCB Development Corporation/National Disability Institute, the Office on Disability created the TAX FACTS Campaign. In partnership with an array of Federal and private-sector partners, this campaign is building knowledge about and using favorable tax provisions and financial education for individuals with disabilities, their families, and employers to empower and advance self-directed economic security. The initiative includes a new brochure addressing tax credits for persons with disabilities, developed by the Office on Disability and Internal Revenue Service.
In Community Integration
Emergency Response Addressing the Health Needs of Persons with Disabilities: A July 2004 Executive Order by President Bush that focused on emergency preparedness for Federal employees with disabilities was the springboard for creation of the Emergency
- Response NFI Subcommittee to help ensure that the health and access needs of all persons with disabilities are addressed in emergency preparedness plans at the Federal, state, tribal and community levels. It is (a) identifying standard requirements that all emergency plans should include; (b) ensuring that plans include disability-specific action steps and are up-to-date; (c) developing and implementing emergency response education and training plans for persons with disabilities, particularly in the workplace; and (d) establishing and implementing a promotion plan to ensure all persons with disabilities understand how to prepare for an emergency.
In Adaptive Technology
- HHS Section 508 Information Technology Adherence: Section 508 of the Rehabilitation Act requires that Federal agencies' electronic and information technology be fully accessible to people with disabilities. The Office on Disability manages and promotes adherence by the HHS Operating Divisions and the Office of the Secretary to Section 508 compliance by undertaking ongoing oversight and training and technical assistance as part of the HHS Section 508 Program Team. The Section 508 Department-wide Implementation Policy is being put into practice, effective January 6, 2005. Training on the policy will be provided to all HHS staff.
Office on Disability Website: Consistent with its charge, the Office on Disability has made available a first-ever HHS web-based information resource on disability that serves as the focal point for HHS-related disability information. This clearinghouse for disability-related information and activities ongoing within HHS and across the Federal government, links to all HHS agencies and Federal partners and, by the end of 2005, also will link to all State Offices on Disability. Further enhancements are developing and integrated telecommunication capacity and information systems to provide online caseworker tools and searchable state
- resource tools to further help provide community-based resources to persons with disability nationwide.
- Coordinating Transportation: The Office on Disability, joined by other partner agencies, is working to help the Federal Transportation Administration meet the disability-related requirements of the President’s February 2004 Executive Order on Human Service Transportation. Specifically, the OD provides guidance and consumer-based input to assure that the full range of transportation needs of persons with disabilities remain in the forefront of the planning and implementation of the Executive Order, such as simplified access, cost-effective transportation services within existing resources, and cost-efficient, non-duplicative use of funding streams.
In Health and Wellness Promotion
- Physical Fitness for Youth with Disabilities: As part of the President’s Healthier US initiative, the Office on Disability created the the I Can Do It; You Can Do It program, specially designed to promote physical fitness and healthy diets among children and youth with disabilities. Working with the President’s Council on Physical Fitness and Sport, this Office on Disability program reaches out to national constituent-based organizations to match physically fit adult mentors with children and youth with disabilities who voluntarily enter the program. To date, 78 organizations expressed interest in participating and helped draft program guidelines and procedures. Nine organizations are piloting this approach to integrating physical fitness into the lives of their constituents. Each youth participant who engages in a 6-week program of physical activity, 60 minutes a day, 5 times a week will be eligible for an award from the President's Council and may move on to more ambitious physical activity and awards. A formal evaluation is underway to assess the pilot program’s effectiveness and its broader application.
- Medicare/Medicaid: The Office on Disability maintains a close working relationship with the Centers for Medicare and Medicaid (CMS) to provide regular, ongoing input into disability-related issues in Medicare and Medicaid proposals and activities based, in part, on extensive input gathered from regularly scheduled OD constituent input meetings (e.g., wheelchair regulations). Most recently, the OD:
- Convened an OD-CMS interdepartmental meeting to support joint funding of FY 2005 initiatives through the use of Medicaid’s Systems Change/Real Choice Grants
- In collaboration with the Centers for Medicare and Medicaid, trained State Medicare and Medicaid personnel on the impact of the new MMA process for populations with disabilities. As a result of that training, OD identified the need for and undertook similar activities with constituent disability organizations themselves, thereby providing up-to-the-moment information about MMA, including the critically important Part D provisions related both to enrollment and prescription drugs themselves.
- Convened constituent input meetings to enable CMS to receive input from the disability community on the development of MMA regulations and their potential impact on persons with disabilities, including, in particular those with dual eligibility for Medicare and Medicaid.
- Co-facilitated Medicaid “Open Door” sessions focused on issues for persons with disabilities.
Children and Youth with Co-Occurring Developmental Disabilities and Emotional and/or Substance Abuse Disorders: In an effort spanning the Department and other Departments with a stake in the New Freedom Initiative, the OD has begun to address the significant problem of youth experiencing both developmental disabilities and emotional and/or substance abuse disorders. A comprehensive work plan is being implemented, built from a strategic
- Federal-State meeting to consider how barriers that prevent States from attending effectively to the service needs of this target population group can be addressed, how funding streams can be better coordinated, and how a stovepipe approach to care and services can be eliminated.
- Addressing the Caregiver/Workforce Challenges of Persons with Disabilities: Led by the Office on Disability, an HHS-wide New Freedom Initiative Workgroup Caregiver Subcommittee is identifying the strengths, gaps, and interagency opportunities around HHS formal and informal programs focused on caregiving. The overarching goal is to enhance the human capacity to promote community living for people with disabilities. Data compiled and reviewed by all participating HHS agencies provide information to help HHS OpDivs work collaboratively and leverage caregiver-related funds and other resources most effectively and efficiently.
- Serving Young Children with Hearing Loss and their Families: Recognizing that early intervention for young children who are deaf or hard of hearing can have a beneficial effect on their future physical and emotional growth and health, including educational opportunity, the Office on Disability established the first HHS Working Group on Effective Interventions for Infants and Young Children with Hearing Loss in October 2004. The Working Group, which spans HHS agencies and offices, is identifying service gaps for these very young children and their families, and making recommendations for ways to bridge the gaps, helping to reduce the immediate and long-term issues that confront these young children and their families. Three separate reports, highlighting current difficulties facing these families and identifying solutions (including innovative strategies being implemented today), are being developed across the topics of comprehensive health services, comprehensive educational services, and new research directions. When completed, the reports will be made widely available through the Office on Disability web site, www.hhs.gov/od/.
Spanning Needs of Special Populations
- HHS Young Adult Program: To advance the NFI and consistent with the charge to the Office on Disability, it is convening two cross-agency, intergovernmental-funded Policy Academies to better enable States and local communities develop and implement specific action plans to address the health, human services, employment, education, housing, and transportation needs of young adults (ages 16 to 30 years) with disabilities. This Program helps States and communities more effective use limited resources to develop a solid infrastructure and coordinated and integrated State and local services systems for this targeted age group who otherwise often become homeless, criminalized and/or inappropriately institutionalized. Ongoing technical assistance will be available to help the 12+ States involved in the Policy Academies implement their action plans.
- Special Health Challenges: The Office on Disability is developing a proposal to address the unique health challenges of persons of color (American Indian/Alaska Native, African American, Hispanic/Latino, and Asian American/Pacific Islander) with disabilities. These racial and ethnic populations often have the highest rates of disability and the least access to needed community-based services.
- Addressing the Health Needs of Women with Disabilities: In collaboration with the HHS Office on Women’s Health, the Office on Disability co-sponsored an August 2004 national meeting Women of Color: Taking Action for a Healthier Life: Progress, Partnerships and Possibilities, ensuring that the unique needs of women with disabilities were addressed and emphasizing understanding of disparities and cultural differences. Further, in December 2004, the Office on Disability convened a summit, Breaking Down Barriers to Health care for Women with Disabilities, thathighlighted the many challenges facing women with disabilities in obtaining appropriate healthcare, and explored ways that health professionals and facilities can overcome these barriers to provide the best possible care. A conference-based white paper identifying recommended actions in addressing the health care challenges faced by women with disabilities will be available on the Office on Disability website.
Providing Responsibility and Accountability in Serving Persons with Disabilities
A history of the HHS Office on Disability shows what can be accomplished by a few dedicated and motivated people, with little funding but many resources, coupled with great belief in the objectives of the President’s New Freedom Initiative. The history of the Office will continue to be built over the coming four years of President Bush’s second term in office and beyond. The legacy of that work will endure both within HHS, and beyond in both the public and private sectors, yielding benefits in housing, community supports, health, information, education, and employment for persons with disabilities for years to come.