Definitions

The definition of “institution” continues to evolve. This paper focuses on a traditional definition of an institution as a large, usually state-run, hospital-style setting, often located in a rural area. However, according to federal regulations, ICF/DDs, which include smaller community-based facilities with populations of 6–16, are also defined as institutions.

NCD believes that institutional care can exist not just in large state-run facilities but in small community-run small group homes as well; therefore, NCD has defined “institution” as a facility of four or more people who did not choose to live together. This new definition raises the standard and continues the trend toward smaller, more intimate housing situations for people with ID/DD. In this paper we use the more traditional definition of six or more, as data are not currently available for the lower number.

These definitions focus on the number of people who live in the same house, but advocates have developed a definition that focuses on quality of life and control issues. In 2011, a coalition of self-advocates defined institutions based on their own priorities in Keeping the Promise – Self-Advocates Defining the Meaning of Community.[i] They defined institutions as places that—

• Include only people with disabilities
• Include more than three people who have not chosen to live together
• Do not permit residents to lock the door to their bedroom or bathroom
• Enforce regimented meal and sleep times
• Limit visitors, including who may visit and when they may do so
• Restrict when a resident may enter or exit the home
• Restrict an individual’s religious practices or beliefs
• Limit the ability of a resident to select or remove support staff
• Restrict residents’ sexual preferences or activity
• Require residents to change housing if they wish to make changes in the personnel who provide their support or the nature of the support
• Restrict access to the telephone or Internet
• Restrict access to broader community life and activities

Population by Setting Type

In 2009, 469,123 people received services and supports while living in state or nonstate institutions, nursing facilities, small congregate residential settings, and even in their own homes. Another 599,152 received some services and supports while living with their families.[ii]

Historically, many stakeholders thought of community-based care as small group homes with three to six people staffed full time by providers, or small ICFs, which are similar to small group homes but more highly structured. However, states have been expanding options with six or fewer residents to respond to individual needs and allow people to live in the most homelike setting possible. As shown in Table 1, in 2009, 138,302 people lived in HCBS waiver group homes, 40,967 lived in host and foster homes, and 122,088 lived in their own homes.

The deinstitutionalization movement tends to focus on the 32,380 people in large state institutions. However, more than 100,000 people are in other restrictive settings, including smaller ICF/DDs with 7–15 residents and other large institutions and nursing homes.

Population Trends

The institutionalization of people with ID/DD peaked nationally in 1967, when 194,650 people with ID/DD were housed in large designated state institutions. By 2009, this number had been reduced to 32,909.[iii]

Table 1. Residents with DD by Size and Type of Setting, 2009

Source: Data from Lakin et al. 2010.[iv]

Most of the deinstitutionalization debate is focused on large state institutions. However, this represents only a portion of the people with ID/DD housed in institutions: 29,608 people with ID/DD are in nursing facilities and 18,485 are in private ICF/DDs with more than 16 residents.

Figure 1. Average Daily Census of People with ID/DD in Large State ID/DD Facilities, 1950–2009

Population Variation Among State

States vary widely in the number of residents in their state institutions. As of 2008, 85 percent of the nation’s institutionalized population resided in 18 states, with Texas housing almost one in seven (14%) of all institution residents.

As shown in Figure 2, the number of people living in large state institutions varies by region and by state. A number of states in the East and Southeast still have more than 1,000 institution residents. States in the Midwest tend to have relatively few people in institutions, with the notable exception of Illinois, which currently has 2,254 people living in large institutional settings.[i]

Figure 2. Map of the Number of People with ID/DD Living in Large State Institutions

Source: Based on data from Lakin et al. 2010.[i]

Deinstitutionalization: Goal and Strategies

The Goal

The goal of deinstitutionalization is to move people with ID/DD out of segregated institutions to integrated lives in the community with services and supports. Research and experience clearly show the benefits of community living compared with living in an institution. These benefits include an increased quality of life for people with ID/DD, cost savings for the government, and the opportunity to use these savings to provide services to people who are currently not served.

When the system works well, transitioning people from an institution to the community begins with a plan for each resident and results in each person living in a home; not just another residential setting, but a home, a sanctuary, a place where the residents have the most autonomy possible and are treated with dignity and respect.

Some people claim that every challenge must be overcome before deinstitutionalization; however, keeping institutions open slows the process of enhancing the community system. Institutions can absorb state resources and divert attention from the need to develop a quality home and community-based service (HCBS) delivery system.

The current fiscal constraints faced by states compound the challenge of developing and maintaining a strong community-based service system. Some states are cutting back on the amount of services they provide to each recipient or are limiting the number of service recipients.

Strategies that Work

Making a system work for people is not an easy task, but it can be done. Closing an institution is not one act; it is many pieces of work coming together to create the opportunity for a community to rethink how it serves and supports its citizens with intellectual and developmental disabilities. It is important to develop a plan that includes identifying allies and partners and their roles, and developing strategies to move the work forward. A successful transition also includes the creation of a robust community-based system of care and a commitment to quality assurance as an ongoing process involving a diverse group of stakeholders.

Strategies for the Deinstitutionalization Movement

Set a vision and comprehensive agenda. A clear vision and agenda are key to success.

Successful initiatives include several critical elements. They—

• Focus on the ideas that people with intellectual and developmental disabilities have the right to live in the least restrictive environment and that the state’s resources should be allocated as efficiently as possible.
• Create broad and inclusive plans that begin with the most comprehensive vision of a system of community care for people who are currently in state institutions, in the community, and on waiting lists.
• Start with a vision based on ending segregation and discrimination, and stay focused on that vision rather than on cost, which is compelling but should not be the primary reason for closing institutions.

Stay focused on the goal. Once the vision has been identified and the agenda set, do not compromise on the vision or the values you have established. The political process tends to modify and cut down. You might have to compromise at some points in the process on details or timing, but the vision must remain clear.

Create a deinstitutionalization platform and an outline of principles. People with developmental disabilities have the right to live in the least restrictive setting. Strong communications are critical; position papers and a deinstitutionalization platform can help keep the coalition unified and anchored. The platform can also serve as a major educational tool with lawmakers and the media. An excellent example was developed by the Arc of Connecticut in its Platform for Reform which included concepts such as person-centered services, self-determination, full empowerment of families, and self-advocacy, as well as a commonsense plan for reform and implementation strategies that will effect real inclusion.

Several key strategies have worked well in states that have closed institutions and those that are in the process of closing them:

• Frame the debate. Frame the debate with vision and values. This puts the focus on the individual and his or her rights rather than the interests of other groups.
• Focus on closure as a civil right. This strategy shifts the discussion to a legal one and focuses the debate on the rights of people with disabilities rather than on the numbers, the economic benefits to the state, or the impact on the economy of the community that houses the institution. Individual rights are at the core of the litigation surrounding institutional closure. (See “Pursue a legal strategy” below.)
• Define the choice—not “if” but “when” and “how.” The state can choose to frame the discussion in a way that focuses the community’s attention on the important issues that surround the closing of an institution, such as capacity building and development of a quality assurance process. This approach includes all stakeholders and can create an environment of inclusion and ownership in the success of the closure and the transition of people into high-quality, person-centered living situations in the community.
• Shut off new admissions. States that use the deinstitutionalization strategy of shutting off new admissions have generally faced less opposition than states that close the doors at the beginning of the deinstitutionalization process. To successfully pursue this strategy, state officials and stakeholders must identify the pathways leading to institutionalization and offer alternatives. Some states (e.g., Georgia, Michigan, and New Hampshire) have chosen to focus on children first and then move on to adults. However, this strategy may take too long: Missouri, with no admissions in more than two years, still has six state-run institutions. Representative Scott Rupp has introduced legislation to close the facilities within five years.
• Pursue a legal strategy. Coalitions around the country have benefited from a legal strategy with the involvement of the state’s protection and advocacy (P&A) agency, legal aid organizations, or the U.S. Department of Justice (DOJ). Federal policy and programs are evolving to support more people living in the community. In June 2011, the Department of Justice released a legal rights resource guide to help states identify tools and recent court decisions that can guide their strategy development. The guide can be accessed at: http://www.ada.gov/cguide.pdf.

In almost all states in which deinstitutionalization has occurred, litigation has played a strong role; in fact, it is often the initial impetus for closure or downsizing. Litigation continues to be among the strategies used to require states to cease alleged violations of federal Medicaid law, the ADA, Section 504 of the Rehabilitation Act, and the U.S. Constitution. Litigation has been successful in improving access to Medicaid home and community-based services, downsizing institutions, and challenging restrictions on the scope of services so people with developmental disabilities can live in the most integrated settings.

The legal consensus, developed over years of litigation and currently being enforced by DOJ, is that people have a fundamental right to live in the least restrictive environment that meets their needs.

Legal remedies have accelerated the pace of deinstitutionalization. In recent years, federal intervention—through DOJ lawsuits and formal and informal settlement agreements—is pushing states to move more quickly in their efforts to deinstitutionalize people with ID/DD. Under general rules governing lawsuits brought by the Federal Government, DOJ may not file a lawsuit unless it has first attempted to settle the dispute through negotiation. The Olmsteaddecision has often been called the Brown v. Board of Education of the disability rights movement. In June 2009, President Barack Obama, commemorating the anniversary of the Olmstead ruling, said,

Develop a working knowledge of Medicaid and the Affordable Health Care Act. Medicaid policies have evolved in recent years to provide additional options for facilitating community-based care, and many successful closures have capitalized on these opportunities. It is important to develop policy experts within the state Medicaid program and in the community, as well as expert contacts for the Patient Protection and Affordable Care Act of 2010 (PPACA), which will affect the availability of some services as the plan rolls out over the next few years. It is especially important to know the following:

• Basic rules on eligibility and costs
• Basics of your state plan
• Provider rate structure and its impact on service availability; specifically, the availability of medical and dental providers

Build the case. The case for community-based rather than institutional care is very compelling. Provide cost data for the number of people who could be served in the community compared with the costs if they live in institutions, as well as data on quality of life and health outcome benefits associated with living in the community. Inform legislators and others about the ramifications of the law and interpretations such as the Olmstead decision. Advocates have found it necessary and important to debunk the many myths that exist regarding the civil rights issues at the core of this discussion.

Advocate for quality assurance standards that will protect the health and safety of people living in community settings. The deinstitutionalization plan should specify how the state agency will ensure that the standards of care identified in the plan will be monitored and what corrective action the state will take if it determines that care is not meeting these standards or is not being provided at all. Some states have developed local, regional, or state quality assurance councils to help with this important work. Success is a process, not a single event; it takes time to build the community capacity and the oversight systems that are necessary to ensure that people’s needs are met.

Basic Advocacy Strategies to Support the Initiative

The following are some basic strategies that are key to all successful system change efforts.

• Line up leadership. To move the process forward, the coalition needs support from the state agency, the governor, and the legislature. Successful closures have been based on bipartisan support. To engage leaders, families must visit them and share their individual stories.
• Be aware of the political environment. Many factors are at play in the potential closure of an institution, including the economic impact on communities, concerns of people with ID/DD, and concerns of family members. It is important to understand the political environment, including the interests and positions of opponents of closure.
• Seek out the challengers. Challenges to institutional closure are often mounted by parents of institution residents or state workers at the institutions and the unions that represent them. The best approach is to hold informal meetings with businesses, families, union representatives, and local legislators to share information, focus the discussion on civil rights, negotiate, solve problems, and even engage these groups in the design of the deinstitutionalization plan.
  
  Rather than developing a “bunker mentality,” successful closure coalitions tend to take an open-door problem-solving approach with challengers, without compromising on principles. Identify and discuss the needs and fears of people with ID/DD and their families. Communicate with families about their specific concerns, which might include access to regular health care and dental care, safety, and continuity and quality of care. Point out real-life situations (not just data and examples from other states) in which people just like their family members are living successfully in the community. Enabling people with disabilities to interact with others like themselves who are living in the community is a powerful tool. This has been done successfully.
• Create timely, targeted communication, public education, and media relations. To defuse challenges to the concept of institutional closure, proponents must mount a campaign to confront the stigma, misinformation, and negative attitudes associated with deinstitutionalization. Use real stories to change attitudes and foster a broader understanding of the nature of community-based living through public testimony and through personal conversations with legislators. Myths and misconceptions about how people can be served in the community and the effectiveness of community-based services can be difficult to overcome. Self-advocate and family testimony is powerful, especially when the discussion includes personal stories combined with national studies of effective interventions, treatment models, and outcomes.

Getting a deinstitutionalization plan approved and funded is only half the battle; implementation has its own unique challenges. The coalition must demonstrate that it is committed to individualized care plans with strong quality assurance measures. A one-size-fits-all plan will not work; it will not serve the individual well and will not address family concerns. The coalition should participate in the development of the implementation plan, monitoring progress and identifying concerns, which can then be addressed with the state agency or other implementing individuals or groups.