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Beyond Olmstead: Community-Based Services for All People with Disabilities

A Workshop for State and Local Health Officials


This workshop was designed for senior State and local policymakers who must understand and determine how to respond to the impact of the Supreme Court's Olmstead decision (Olmstead v. L.C., 527 U.S. 581 [1999]). The workshop was held in Chicago, Illinois, July 11-13, 2001.

About the Workshop Sponsor.


Overview

Objectives

Much of the research and experience about serving persons with functional limitations is focused on discrete populations. This workshop was designed to translate these findings and experiences across populations and encourage participants to apply lessons learned from programs serving a specific group of consumers to other groups. At the completion of the workshop, it is expected that participants will better understand:

  • The implications of the Olmstead decision for State long-term care planning.
  • The processes used to create and financially support innovative service systems, including consumer-centered planning strategies.
  • How to define, develop, promote, and overcome barriers to consumer-directed service models.
  • Ways to ensure the quality of consumer-directed services.

Session Summaries

Policy and Planning Implications

This session set the policy context for the workshop and described the Olmstead decision and its key points. It also discussed the Administration's policy and direction concerning Title II of the American's with Disabilities Act (ADA) and the assistance available from the Office of Civil Rights to help States respond to the Olmstead decision and complaints. The session included a discussion of the general types of issues that tend to be raised in Olmstead complaints and that can inform States regarding key matters to be addressed in Olmstead planning efforts, service design, and program administration. The session also reviewed recent decisions related to Medicaid funding of long-term care services furnished in both institutions and the community.

Community-Based Delivery Systems

Many States are developing plans to better ensure compliance with the Olmstead decision. Teams consisting of multiple State agencies and other stakeholders are examining such issues as: waiting lists for home and community-based services, outreach and education efforts, assessment processes to identify possible candidates for less restrictive placement, transition processes, monitoring, and quality assurance. This session described two States' plans and the processes used to develop these plans.

Successful Transitions from Institutions

The Olmstead decision reinforced the priority of people in nursing homes, State facilities, and other institutional settings to have opportunities to live independently at a time when State policy is responding to the preference of people with disabilities to live in community settings. Several States have developed initiatives to identify and assist people living in institutions to return to the community. Such relocation efforts are not without risk, but with careful planning, can improve the health and quality of life of participants. This session examined some of these risks and explored strategies to ensure successful transitions.

Planning and Budgeting

Serving people in community settings means developing care planning and budgeting strategies that reflect consumer preferences. The consumer-directed movement has shifted the focus from case managers and programs to consumer preferences and needs. Consumers have become "customers" rather than "recipients," and the new focus has changed the structure and focus of State programs. The Rhode Island Choices program established an integrated approach in acute care and community long-term care supports, using principles of managed care to give adults with developmental disabilities a greater role in designing and purchasing health and community support services. Wyoming examined spending trends of people with different characteristics, function levels, environments, and service utilization patterns; the State also looked at developing individual budgets to guide decisionmaking of consumer-centered planning teams.

Designs, Budgets, and Preferences

Serving people with disabilities in community settings requires access to accurate information about available services, a range of supportive services, multiple provider systems, and funding to pay for services. Case studies have identified common characteristics of comprehensive community-based programs serving people with disabilities. The Wisconsin Family Care program creates a "one-stop shop" for information about all long-term care services and access to a single organization to select services appropriate to the beneficiary. The program consolidates all Medicaid long-term care services into a single menu of options to foster recipients' independence and quality of life, while recognizing the need for support to remain independent.

Access and Quality

People with disabilities living in the community also need access to quality health care as well as supportive services. Fragmentation of services often limits access to health care and creates quality barriers for people with disabilities. This session presented a literature review of studies addressing the barriers and quality implications of care for people with disabilities and an emerging model that integrates supportive services with primary care and specialty care. The Wisconsin Partnership Program is a comprehensive program of services for people who are elderly or disabled. The program integrates Medicare and Medicaid health and long-term support services and includes home and community-based services, physician services, and all other medical care.

Cash and Counseling

Community-based services are delivered within an overall planning and budgeting framework. In recent years, States have given consumers a choice of receiving agency-based services or managing their own care attendant. This consumer-centered philosophy allows consumers to manage and control the actual delivery of services. Half the States that cover personal care as a Medicaid State plan amendment and 60 percent of the Medicaid home and community-based waiver programs in 45 States have implemented programs that give consumers more control over the delivery of care. Early research findings from the Cash and Counseling Demonstration program, funded jointly by the U.S. Department of Health and Human Services Office of the Assistant Secretary of Planning and Evaluation, and the Robert Wood Johnson Foundation, found high satisfaction among participants directing their own care.

Independence Through Work

For many people with disabilities, moving to the community establishes functional independence. Many also seek financial independence and have the capacity to work if there are adequate support services. In the past, people with disabilities whose earnings exceeded specified thresholds lost access to health care and supportive services through Medicaid. Recent legislation removes barriers to work. More than a dozen States have chosen to expand Medicaid eligibility through the Ticket-To-Work and Work Incentives Improvement Act of 1999 (TWWIIA), the Balanced Budget Act, and section 1115 demonstration program waivers. Under TWWIIA, working individuals with disabilities are eligible for Medicaid (at State option) if they have net incomes below 250 percent of the Federal poverty level and, except for earned income, would meet the eligibility requirements for Supplemental Security Income. States have flexibility to determine the income and asset limits, income disregards, and premiums that may be charged for the program.

Balancing Risk and Safety

Giving consumers more control creates debates about risk and safety. Is the living environment safe? Do other members of the household pose a threat to the safety of the consumer? Does the consumer have adequate oversight and monitoring for health conditions? Are staff available to perform needed nursing tasks? Are unlicensed staff able to perform nursing tasks? Is delegation safe? Will registered nurses be liable for poor care? Can consumers be relied upon to make appropriate decisions, understanding the risk involved in living independently? These and other questions are often raised in the context of nurse delegation. These questions challenge policymakers to balance risk-taking and consumer decisionmaking.

Implications of Consumer Control

Consumer control and independence are affected by the degree of control a person has over their care and the ability of the support system to meet the person's needs. If an individual does not have ready access to help with medication administration and other nursing tasks, independence may be compromised. Unlicensed staff can play a meaningful supportive role, if they have the ability to perform routine nursing tasks. Nurse Practice Acts influence the ability to provide care in the community and can make possible the delivery of affordable and effective care in a variety of settings and present the approaches taken by States.

CMS Initiatives

As the major payer for long-term care services, the Centers for Medicare & Medicaid Services (CMS) (the agency formerly known as the Health Care Financing Administration) has an enormous influence on the services available to people with disabilities. The vision and policies of CMS set the parameters for State policy. CMS has taken several steps to support the delivery of home and community-based services, including providing funds for States. These initiatives include promoting regulations that support expanded eligibility for community services, grants to assist with transitions from institutions to community settings, grants to promote improvements in the design and delivery of home and community-based services, and grants to support development of community-based attendant services with consumer control. These initiatives reflect a philosophy and commitment to promoting options for people with disabilities.

Future Research

Participants were asked to identify research priorities that would assist State and local health officials in developing policy.


AHRQ's User Liaison Program (ULP) disseminates health services research findings in easily understandable and usable formats through interactive workshops. Workshops and other support are planned to meet the needs of Federal, State, and local policymakers, and other health services research users, such as purchasers, administrators, and health plans.

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