Initiative ~ Executive Order ~ HHS Role ~ News & Additional Resources

Delivering on the Promise
Table of Contents

U.S. Department of Health and Human Services
[Complete Report: HTML = 315K / PDF = 426K]
Table of Contents ~ Chapter I ~ Chapter II ~ Chapter III
Appendix A ~ Appendix B ~ Appendix C ~ Timeline

Self-Evaluation to Promote
Community Living for People with Disabilities

Report to the President
on Executive Order 13217

Chapter I: Executive Summary

Introduction
Executive Order 13217 on Community-Based Alternatives
HHS Self-Assessment Methodology and Barrier Identification
Blueprint for Delivering on the Promise
1. Developing a Coherent, Cost-Effective System of Administration and Finance
   Eliminating Institutional Bias in HHS Programs
   Services for Persons with Mental Illness
   Improving Availability and Capability of Direct Care Workers
2. Assistance to Families and Informal Caregivers
3. Improving Coordination and Reducing Fragmentation
4. Ensuring Accountability and Fulfillment of Legal Obligations
Conclusion

"The Americans with Disabilities Act declared our nation's commitment to embrace citizens with disabilities and help them participate more fully in the lives of their communities. Eleven years later, we need to keep working to open the doors to independence. The President has laid out a comprehensive plan in his New Freedom Initiative. The steps we're taking today are one part of that greater plan."

--	Secretary Tommy G. Thompson, July 25, 2001, celebrating the 11th anniversary of the ADA and announcing the creation of the Interagency Council on Community Living

INTRODUCTION

The day-to-day work of the United States Department of Health and Human Services (HHS) touches the lives of every American and has special significance for Americans with disabilities. HHS provides funds and oversees critical and significant programs that serve people with disabilities of all ages. In FY 2000, total HHS expenditures for people with disabilities was $73.5 billion. The largest of these expenditures was for Medicaid ($43 billion). Medicare spending totaled approximately $28 billion. The Social Services Block Grant spent $1.8 billion, while the Substance Abuse Block Grant totaled $1.6 billion. Another billion dollars was awarded in grants under the Older Americans Act. A total of 24 HHS programs provide services to people with disabilities.

President George W. Bush's New Freedom Initiative has imparted new direction and energy to HHS' efforts on behalf of individuals with disabilities. Promoting full access to community life is one of the major objectives of the President's Initiative. One of the specific actions taken by the President to advance this objective was the issuance of Executive Order 13217 on community-based alternatives, which called for a comprehensive assessment of existing federal policies, programs, statutes and regulations to identify barriers that impede community living and for recommended solutions. The President directed that this assessment involve broad public input.

This report, Delivering on the Promise: HHS Self-Evaluation to Promote Community Living for People with Disabilities is based upon an exhaustive agency self-assessment and review and analysis of comments from more than 800 individuals and organizations representing diverse interests and disabilities. The process led HHS to identify critical barriers to community-based alternatives for people with disabilities and commit to take concrete action to reduce and eliminate those barriers.

As a result of the work that has been done by HHS in response to the President's Executive Order, HHS now has, for the first time, a comprehensive policy framework to guide and coordinate the activities of the multiple HHS components involved in supporting community living for people with disabilities. For the first time, HHS will also have a formal mechanism -- an Office on Disability and Community Integration -- to oversee implementation of HHS-wide policy and activities concerning community supports. The establishment of a comprehensive HHS policy and the creation of a formal mechanism to oversee policy implementation in this area is an historic turning point for HHS.

Delivering on the Promise is divided into three chapters. This chapter includes a brief description of the Executive Order and the methodology used to conduct the HHS self-assessment, and summarizes the actions that HHS will pursue to further promote community integration. Chapter II describes HHS components and the financing and structure of community supports, detailing the key HHS programs that provide them. In addition, Chapter II highlights the critical work of HHS to promote community integration, including efforts over the past year to implement the New Freedom Initiative. Chapter III sets forth the concrete actions that HHS will pursue to further promote community integration and summarizes the barriers future activities will address.

EXECUTIVE ORDER ON COMMUNITY-BASED ALTERNATIVES

On June 18, 2001, President Bush signed Executive Order No. 13217, "Community-Based Alternatives for Individuals with Disabilities." The Order calls upon the federal government to assist states and localities to implement swiftly the decision of the United States Supreme Court in Olmstead v. L.C.,¹ 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."

Executive Order 13217 is an important component of President Bush's New Freedom Initiative. It is a milestone because it marks the first time since enactment of the Americans with Disabilities Act (ADA) that the Administration has directed federal agencies to take specific actions to eliminate the unjustified segregation of individuals with disabilities in institutions.

The President's charge to federal agencies in the New Freedom Initiative and in Executive Order 13217 has special relevance to the work of HHS. As the agency that administers Medicaid, the largest public program supporting health care, HHS has a critical role to play in achieving community integration for people with disabilities. Accordingly, the Order designated HHS as the lead agency with responsibility for coordinating the federal response to the Executive Order.

HHS SELF-ASSESSMENT METHODOLOGY AND BARRIER IDENTIFICATION

HHS undertook a systematic self-evaluation process pursuant to Executive Order 13217, which featured:

• Review by each HHS component of all policies, programs, statutes and regulations.
• Written analysis by all components of barriers to community integration and potential solutions.
• Review of existing studies identifying barriers to community integration.
• Creation of an Interagency Council on Community Living to coordinate all federal agency evaluations and public input.
• Collection of public input, through the combined effort of ten federal agencies spearheaded by HHS, via three specially created venues (day-long "National Listening Session"; national toll-free conference call; and formal public comment period published via notice in the Federal Register).
• Formation of "Solutions Subgroups," made up of representatives of various HHS components, to review and analyze solutions offered via public input and through component self-assessments.

This self-evaluation process revealed five major types of barriers to community living for people with disabilities: (1) imbalance in system structure and finance; (2) lack of responsiveness of services to meet individual needs; (3) need for greater assistance to families and informal caregivers; (4) fragmentation and lack of coordination; and (5) need for increased accountability and legal compliance.

BLUEPRINT FOR DELIVERING ON THE PROMISE

To address these barriers, HHS has developed a comprehensive policy framework featuring seven basic types of action:

• Infrastructure -- HHS will build an enhanced infrastructure within the Department to promote community alternatives for people with disabilities through the establishment of the Office on Disability and Community Integration and other management initiatives.

• Collaboration -- HHS will support an unprecedented level of collaboration within HHS and among federal agencies that provide critical supports and services to people with disabilities.

• Regulatory and Legislative Reform -- HHS will propose system reforms to reduce institutional bias by eliminating administrative inefficiencies, reducing fragmentation and increasing services.

• Stakeholder Participation -- HHS will ensure on-going input of key stakeholders in system reform efforts through the Medicaid Reform Task Force and other workgroups.

• Innovative Demonstrations -- HHS will test new models of community-based services delivery through demonstrations to improve supports to family caregivers, and improve access to community-based treatment for adults and children with mental illness.

• Mediation of Complaints -- HHS will collaborate with the Department of Justice to enhance alternative dispute resolution options available to individuals who file ADA complaints with HHS that allege non-compliance with Olmstead.

• Technical Assistance -- HHS will develop more and better technical assistance to states to promote community-based care and compliance with Olmstead.

Some of the specific actions included in HHS' blueprint for improving access to community living for people with disabilities are highlighted in each category below. A complete list of such actions is provided in Chapter III.

Developing a Coherent, Cost-Effective System of Administration and Finance

Eliminating Institutional Bias in HHS Programs

• HHS will seek greater flexibility for states and a broader set of options for people with disabilities under Medicaid home and community-based services (HCBS) waivers. HHS will promote enhanced opportunities for people of all ages who have disabilities to participate in their communities and exercise meaningful choice and control over services.

• HHS will establish an advisory committee that will recommend reforms in HHS programs to remove barriers and promote community living on the part of people with disabilities. The committee will include substantial representation by individuals with disabilities, family members of individuals with disabilities, advocacy organizations, and providers, as well as state and local government representatives.

• HHS will offer "Phase II" of the "Real Choice System Change" grants, which generated enormous interest from states, attracting approximately $240 million in requests from states to fund systems change. Additional funds will help states make critical progress towards systemic reforms enhancing home and community-based services.

Services for Persons with Mental Illness

• HHS will develop and implement strategies to improve access to HCBS waiver and non-waiver services for adults and children with mental illness or emotional disturbances, or co-occurring mental illness and substance abuse or other disorders.

• HHS will also propose statutory improvements to create a ten-year HCBS demonstration as an alternative to Medicaid-funded psychiatric residential treatment centers. The demonstration would allow states to set up home and community-based alternatives for children who would typically be served in psychiatric residential treatment facilities.

Improving Availability and Capability of Direct Care Workers

• HHS will initiate, together with a limited number of volunteer states, a national demonstration designed to address workforce shortages of community service direct care workers. Participating states would develop options for workers to purchase affordable group health coverage through the state health insurance system or similar organized insurance group.

• HHS will undertake an initiative to (a) mobilize and make available to states a coherent body of information about methods to address worker shortage issues, (b) research significant issues, and (c) partner with foundations, other private sector organizations, the Department of Labor, and other agencies to formulate a comprehensive approach to the worker shortage issue.

Assistance to Families and Informal Caregivers

• HHS will propose a demonstration project to allow states to include respite (temporary care that offers support to family caregivers) as a Medicaid service. Unrelieved caregiver burden is a major contributing factor to institutionalization of individuals with disabilities. Respite care is the service most often requested by families in an effort to keep family members with disabilities at home.

• HHS will provide model waivers through the Medicaid program that will provide states with greater flexibility to support families within cost-neutral budgets.

Improving Coordination and Reducing Fragmentation

• HHS will establish an Office on Disability and Community Integration. The Office on Disability and Community Integration will serve as the focal point within the Department for disability issues including the coordination of disability science, policy, programs and special initiatives within the Department and with other federal agencies. The Office on Disability and Community Integration will be led by a senior-level HHS official.

• HHS proposes that the President publicly and permanently establish the Interagency Council on Community Living and set forth its mission and charge. Membership would include all agencies listed on the Executive Order, as well as the Internal Revenue Service (IRS), Department of Transportation, and others as appropriate. Designated members would be Secretaries, agency heads, or the equivalent. In addition, staff would be assigned to meet regularly to conduct the ongoing interagency work.

Ensuring Accountability and Fulfillment of Legal Obligations

• HHS and the Department of Justice (DOJ) will develop a pilot program to use DOJ's alternative dispute resolution program to resolve individual complaints filed with HHS that allege violations of the ADA Title II integration regulation as interpreted in the Olmstead decision.

• HHS will work with states and people with disabilities to improve the quality of home and community-based services, and will engage a national contractor to help states implement effective quality improvement strategies.

CONCLUSION

In the aftermath of the tragic events of September 11, freedom has taken on a new meaning for all Americans. However, for Americans with disabilities, freedom has always held a special meaning -- the freedom to live as independently as possible. As one of the individuals testified at the National Listening Session several days before the September 11 tragedy:

I developed multiple sclerosis when I was in my 40's and became a disabled person. I lost my wife, my ability to work, my house. I lost everything. Now I live at a poverty level on Social Security disability. I live in an elderly housing project in a 500 square foot apartment. But for that I am thankful. I look around me and I see homeless people, I see people living in institutions, nursing homes. That makes me feel thankful for what I have. But I'm very afraid. I have a degenerative disease. It gets worse and it only goes in one direction. And I fear that if I can't have attendant care when I need it in my home, I will be institutionalized. And what I will lose, then, is the last thing that I have. It's my freedom.

Consumer, September 5, 2001          
National Listening Session                  
sponsored by the Interagency Council
on Community Living                            

Delivering on the Promise makes clear that HHS is committed to promoting freedom for individuals with disabilities by tearing down the barriers that impede opportunities for community living.

____________________

1. In Olmstead v. L.C., 527 U.S. 581 (1999), the Supreme Court held that the unnecessary institutionalization of qualified individuals with disabilities in institutions is a form of discrimination prohibited by the ADA. The Court held that states are required to provide community-based services for persons with disabilities who would otherwise be entitled to institutional services when: (a) treatment professionals reasonably determine that such placement is appropriate; (b) the affected persons do not oppose such treatment; and (c) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others who are receiving state-supported disability services.

Last revised: May 12, 2002