Myth or Reality? The Shifting Paradigm from Surviving in an Institution to Living in the Community

Myth or Reality? The Shifting Paradigm from Surviving in an Institution to Living in the Community for Persons with Disabilities

Presenter Name: Julie Shaw

Institution: Governor’s Working Group on Americans with Disabilities Act – Florida Department of Management Services

Primary Research Interests: Issues associated with developing and maintaining community support systems for persons with disabilities incorporating the national New Freedom Initiative and systems change. Americans with Disabilities Act and Olmstead Supreme Court decision issues.


The New Freedom Initiative –President Bush, February 1, 2001

  1. The New Freedom Initiative is a comprehensive plan that represents an important step in working to 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 Initiative's goals are to:
    1. Increase access to assistive and universally designed technologies;
    2. Expand educational opportunities;
    3. Promote homeownership;
    4. Integrate Americans with disabilities into the workforce;
    5. Expand transportation options; and
    6. Promote full access to community life.
  2. As a part of the New Freedom Initiative, the President issued Executive Order 13217, "Community-Based Alternatives for Individuals with Disabilities," on June 18, 2001. The Order called upon the federal government to assist states and localities to swiftly implement the decision of the United States Supreme Court in Olmstead v. L.C., stating: "The United States is committed to community-based alternatives for individuals with disabilities and recognizes that such services advance the best interests of the United States."
  3. Executive Order 13217 directs federal agencies, including the departments of: Justice - Health and Human Services – Education – Labor - Housing and Urban Development - Social Security Administration – Transportation - Veterans Affairs - Small Business Administration - Office of Personnel Management. Together, these agencies formed the Interagency Council on Community Living under the leadership of HHS Secretary Tommy G. Thompson.
  4. Creation of the "Office on Disability" – July 2002
  • Created to accelerate work on the New Freedom Initiative
  • Oversee coordination, development, development and implementation of programs and special initiatives within HHS that impact people with disabilities.
  • The new office will help centralize many of the recommended strategies outlined in "Delivering on the Promise" - agency actions to eliminate barriers and promote community integration.
  • Margaret J. Giannini, M.D., F.A.A.P., has been appointed the director to the new office. She served as the principle deputy assistant secretary for aging at the Administration of Aging.


The Emerging Disability Policy Framework – Robert (Bobby) Silverstein

["Using the Emerging Disability Policy Framework to Support Community-Based Systems Change Initiatives"]

  1. This framework can be used as a lens, guidepost, or benchmark to assess social policy from a disability policy perspective. This framework provides guidance and insight to effectively develop and implement and support home and community-based systems change initiatives and consumer-driven alternatives.
  2. The Old Paradigm - Historically, policy makers and professionals treated people with disabilities as "defective" and in need of "fixing."
  3. The New Paradigm - The new paradigm is based on the precept that disability is a natural and normal part of the human experience that in no way diminishes a person's right to fully participate in all aspects of society.
  4. Goals Of Disability Policy
    1. Equality of Opportunity
    2. Full Participation
    3. Independent Living
    4. Economic Self-Sufficiency
  5. Methods of Administration - Public agencies must adopt workable administration systems and the supporting infrastructure that facilitate the mission of the New Freedom Initiative at the federal, state, and local levels and are consistent with the emerging disability policy framework.

Florida’s Real Choice Partnership Project – Systems Change Program

  1. History - The Federal Center on Medicare and Medicaid Services released an invitation to apply for "Systems Change Grants for Community Living" in May of 2001. The purpose of the invitation was to solicit proposals from States and others, in partnership with their disability and aging communities, to design and implement effective and enduring improvements in community long-term support systems.
  2. Purpose and Goals - To enable children and adults of any age who have a disability or long-term illness to:
    • Live in the most integrated community setting appropriate to their individual support requirements and their preferences.
    • Exercise meaningful choices about their living environment, the providers of services they receive, the types of supports they use and the manner by which services are provided.
    • Obtain quality services in a manner as consistent as possible with their community living preferences and priorities.
    • The grant was funded in order to help Florida and other states/territories comply with the United States Supreme Court decision in L. C. and E. W. v. Olmstead.
    • The focus is to examine state and federal policies related to community services while enhancing local resources that will improve the opportunity for elders and individuals with disabilities to live in the most integrated setting appropriate to their need as required by Title II of the Americans with Disabilities Act.
    • The RCP Project is being administered by the Americans with Disabilities Act Working Group housed in the Department of Management Services.
  3. Goals and Objectives
    1. Goal 1 - Systems Change (Statewide): Create linkages among stakeholders that will result in communication and coordination among the key stakeholders and informed choices for people with severe disabilities and long-term illnesses.
      1. Goal 1 Objectives:
        1. Governor Appointed Interdepartmental Systems Change Team
        2. Real Choice Partnership Coalition (formerly the Florida Olmstead Coalition)
        3. RCP Consumer Task Force
      2. Goal 1 Outcome: Identification and elimination of unnecessary system barriers that limit or restrict real choice for Florida’s citizens with severe disabilities and long-term illnesses.
    2. Goal 2 - Medicaid Waiver Integration (Statewide) - Improve the delivery of services to consumers by increasing provider access and streamlining the four selected Medicaid waiver programs as well as analyzing system barriers in all Medicaid Services/Medicaid Waiver Programs.
      1. Goal 2 Objectives:
        1. Obtain input from the Coalition and the Consumer Task Force regarding unnecessary barriers to the receipt or delivery of services under the waivers.
        2. Identify unnecessary barriers in state or federal policies and regulations that hinder or limit the effectiveness of waiver programs.
        3. Develop recommendations and implementation strategies to address unnecessary barriers.
        4. Medicaid Service/Medicaid Waiver Analysis in final stage.
      2. Goal 2 Outcome: Integration of key aspects of Florida's Medicaid Services/ Medicaid Waiver programs and increased provider capacity.
    3. Goal 3 - Consumer Access/ Clearinghouse (Consumer Level)
      1. Goal 3 Objectives:
        1. Expand the implementation of Florida’s statewide Clearinghouse on Disability Information’s toll free hotline 877-232-4968 (Voice and TTY) in order to function as the single point of data collection and information access on all aspects of the project.
        2. Formally establish a statewide educational campaign on the Clearinghouse program.
        3. Develop consumer feedback mechanism to track consumer satisfaction with the Clearinghouse services.
        4. Establish procedures for making formal referrals to community-based providers and for tracking consumer satisfaction and effectiveness of referrals.
        5. Develop and implement an accessible web site ( on the Clearinghouse that features all activities of the RCP Project that has a citizen focus.
        6. Analyze the benefits and costs of a statewide automated and accessible benefits screening program (SBSP) for professionals and consumers.
      2. Goal 3 Outcome: Increased number of consumers, caregivers and providers informed about appropriate assistive devices, housing and other community-based resources and choices.
    4. Goal 4 - Pilot Sites/Capacity Building (Community level)
      1. Goal 4 Objectives:
        1. The initiative will consist of 3 pilot sites that will be cross-cultural, cross-age group, cross-disability, and cross-community in composition.
        2. Local grassroots long-term care resource networks in the 3 demonstration areas will be created that will include but are not limited to local consumers, faith-based organizations, private for and non-profit entities, government agencies, drop-in centers, housing affiliates, etc.
        3. Design and implement a recruitment, retention and training initiative targeting direct support workers for home and community-based settings using other state models, current best-practices models and input from consumers.
        4. Implement a "Help for the Caregiver" initiative to recruit and place volunteers to provide support services.
        5. Develop and implement an outreach and referral strategy to link consumers, most at risk of institutionalization, with support services in the community.
        6. Housing Component: Create a housing initiative that unites the disability and aging communities, housing administrators and providers to increase housing choices for people with disabilities and long-term illnesses.
      2. Goal 4 Outcome: Increased availability of cross-disability and cross-culturally trained direct support workers; reduced provider agency turnover rates for direct support workers; increased availability of volunteer workers; and increased housing options for people with disabilities.



  1. Can a community-based evaluation, decision support system be developed to identify and track “quality of life status indicators” for persons with disabilities transitioning from institutional to community settings?
  2. What systemic changes must occur in policy, service structures, and funding streams to maintain continuity of services for persons with disabilities transitioning from children to adult status and living in the community?


  1. What policies and legislative mandates at the national and state levels need to be implemented in order to effectively provide persons with disabilities access to affordable housing?
  2. How can policy-makers at the national, state, and local levels, re-develop their programs and services to allow persons with disabilities to exercise meaningful choices about their living milieu and quality of life?
  3. What actions must take place and polices implemented to bring the private sector into a proactive partnership with the disability community working to improve the quality of life (and workplace) for their employees and families with disabilities?


  1. What forms of training and mentoring programs need to be developed for young persons in order to support a youth caregiver campaign?
  2. Training programs need to be developed to train persons with disabilities what housing options they have available in their community.