This section of the Deinstitutionalization Toolkit includes the supportive detail on the subject of Strategy. The research and detailed information are intended to provide background for the Deinstitutionalization Toolkit.
Getting There: Strategies That Work
Making systems work for people is not an easy task, but it can be done. Closing an institution is not one act—it is a series of incremental steps and decisions made over time, consistent with the community’s vision and plan to transform how the state or community serves, supports, and protects its citizens with intellectual disabilities and developmental disabilities (ID/DD). These steps include—
- Identifying possible allies, partners, groups that have differing perspectives and others
- Developing strategies to move the work forward
- Creating a robust community system of care and a commitment to quality assurance
In this section, we discuss these three components of a successful closure movement. For an analysis of closures and additional information of specific examples of different state closure plans, see Section 7 of the Deinstitutionalization Toolkit.
Identifying the Stakeholders
The stakeholders in this effort represent many different interests, points of view, and concerns. It is important to identify the broadest base group possible and to engage individuals and groups that initially may not share the goal of closing institutions and creating community living opportunities for people with ID/DD.
Allies and Partners
It is important to complete an environmental scan and to identify allies and partners that could work together as a coalition. In our review, potential allies and partners include the following:
Protection and Advocacy (P&A) Organizations: The P&A system is a national network of congressionally created, legally based disability rights agencies in each state that provide legal representation and other advocacy services to people with disabilities. People with developmental disabilities are served through the Protection and Advocacy for Persons with Developmental Disabilities (PADD) program, funded in part by the federal Administration on Developmental Disabilities. Although the impact of the organizations varies by state (see National Council on Disability, 2011), PADD has investigated complaints of abuse and neglect, and filed, joined, or intervened in class-action lawsuits that have alleged inappropriate care and treatment, including abuse and neglect of residents, the rights of people with a disability to live in the least restrictive environment, and breaches of statutory and constitutional rights. PADD also advocates for community options at a systemic level.
State Council on Developmental Disabilities: Most state councils are state or quasi-governmental agencies that are in a position to influence state policy and promote an agenda of inclusion and institutional closure (see National Council on Disability, 2011). Councils across the country have engaged in deinstitutionalization efforts through a variety of advocacy, capacity-building, and systems change activities.
Self-Advocacy Groups: Self-advocates are the best voices for deinstitutionalization, and several states have financially supported self-advocacy in order to give people with ID/DD a voice at the state level. National groups such as Self Advocates Becoming Empowered (SABE) and People First, as well as their state and local affiliates, include former institutional residents and can be a powerful voice to speak with decision makers as well as groups that do not support deinstitutionalization. Self-advocates have participated in the closure process in several capacities. For example, People First of Tennessee filed suit to close the Cloverbottom and Arlington Developmental Centers, and reached a settlement in 1996. The institutions closed in 2010. Self-advocates worked with the State of Maryland to describe the benefits of community living to parents who did not support the closure of the Rosewood Center.
Parent Advocacy Groups: Organizations such as United Cerebral Palsy and The Arc advocate for strengthening the community-based system. In some cases, they have joined in lawsuits to affect change on behalf of people with ID/DD.
Independent Living Centers: Centers for Independent Living (CILs) are grassroots, advocacy-driven organizations run by and for people with disabilities. They focus on civil rights, the independent living philosophy, and inclusion (National Center for Independent Living Web site, n.d.).
Private Human Service Providers (Residential and Day Training): Human service providers and the associations that represent them are in a unique position to understand how, and at what cost, the needs of people with ID/DD can be met in the community. However, because they will benefit financially by getting paid for the services they provide to people who move from the institution to the community, their motives are sometimes questioned.
As you continue to identify partners and allies, it is important to consider the position of the following individuals and groups and to ascertain, as early as possible, their position, the support they could give your cause, and the roles they might be able and willing to play.
DD Agency Leadership: Within the constraints set by the legislature, the DD agency leadership is in the position to set a vision for the state’s policy for citizens with ID/DD. It can develop community-based options and encourage people to choose community options to reduce new admissions, or it can support the status quo.
Governor: Committed leadership from a governor can change the tenor of the debate from whether an institution will close to how it will close. Each state has a DD Council with members appointed by the governor and funded by the Administration on Developmental Disabilities. The agencies are charged with advising the governor. However, the extent to which the governor accepts their recommendations varies by state (NCD, 2011).
Legislators: The legislature can be a powerful ally, and in most states the final decision on institutional closure will involve the legislature. However, the legislatures and, most important, legislators representing the districts in which the facilities planned for closure reside may want to protect the jobs of their constituents and avoid any action that may negatively affect the economy of their district.
Individuals and Groups with Differing Perspectives
Another important piece of the environmental scan is to identify the individuals and groups that might not support the closure of institutions in your community. It is important to try to identify their issues, understand their motivation, and determine what strategies can be used to engage them if possible—and if that is not possible, how to refute their arguments and deflect their influence. In other communities, these individuals and groups have included the following:
Unions and Staff: Unions in a number of states represent the state employees of the large institutions who might lose their jobs when an institution closes. Whether or not in a union, staff members generally resist any move that appears to jeopardize their jobs. Institutional closure represents change and uncertainty for their futures.
The Service Employees International Union (SEIU) has broken ranks with public employee unions that do not support deinstitutionalization, and has expressed public support for community-based living. SEIU is also working to unionize home care workers (Taylor, 2008).
Large Private Residential Providers: Private Intermediate Care Facilities for the Developmental Disabled (ICFs/DD) are protecting themselves against closure.
Some Parents of Institutional Residents: For many residents, the institution has been their home for many years, and the possibility of change may be daunting. Some parents not only have similar feelings, but also may have taken comfort in an expectation (common in the past) that state institutional placement was permanent.
On a national level, the Voice of the Retarded (VOR) represents parents and family members opposed to institutional closure, and is the only national organization lobbying for the preservation of large state institutions. The exact size and membership of VOR is unknown. If compared in size with organizations that promote deinstitutionalization, such as The Arc with 100,000 members and 1,000 local chapters, VOR seems to have influence on policymaking that far outpaces its size.
For example, in opposing the closure of institutions in Virginia, VOR argues that facilities have better oversight, services are provided as “wrap-around,” medical staff are on site, and facilities are stable (permanent) and contribute significantly to the local economy. These assertions, although they are not supported by fact and ignore the civil rights of people with ID/DD, and can be persuasive if not challenged effectively.
Other Groups That Impact Strategy
As you review all factors in the environment that will affect your strategy and your desired outcome, it is also important to consider the role of the following groups and to determine how you could engage them to work with your group. These groups include the media, the Department of Justice (DOJ), courts, court monitors, and the Centers for Medicare and Medicaid Services (CMS).
The Media: The media, using both editorials and investigative reporting, help to shape public opinion. Today’s media focus on stories to which they are guided by key stakeholders. In covering institutional closures, the press often focuses on long-term residents of the institution and fails to report on people with ID/DD who are successfully living in the community. For example a 2010 Associated Press story about the potential closure of an institution in Washington State begins, “Larry Butts first set foot in the Rainier School campus the day it opened in 1939, when he was just 6 years old. Seventy-one years later, he could be forced out of the only home he’s ever known if lawmakers decide to close the Buckley facility he shares with nearly 400 other developmentally disabled patients.”
In some cases, the media can be a powerful force for institutional closure. Several well-known exposés have been credited with prompting major changes. For example, Geraldo Rivera’s 1972 investigative report exposed neglect, abuse, and a lack of programming at Willowbrook, a state institution for people with ID/DD on Staten Island. This exposé prompted the closing of that institution and the creation of P&A organizations. In another example, in 1978 a Detroit Free Press series of stories of abuse at the Plymouth Center in 1978 helped close that institution.
Although not common, this type of investigative reporting still occurs. For example, Mary Beth Pfeiffer has published a series of investigative reports in the Poughkeepsie Journal about the slow pace of deinstitutionalization at the Wassaic Campus of the Taconic Developmental Disabilities Service Office, the high cost of institutional care in New York State, and the role that Medicaid overpayments play in maintaining the status quo (Pfieffer, 2010). The Chicago Tribune has run a series of stories about unexplained deaths of children with disabilities at Alden North, a 93-bed privately run nursing home providing ICF/DD services to children near Chicago, Illinois (Hopkins and Roe, 2010).
Department of Justice (DOJ): The 1980 Civil Rights of Institutionalized Persons Act (CRIPA) gives the attorney general the right to conduct investigations and litigation relating to conditions of confinement in state or locally operated institutions (the statute does not cover private facilities). DOJ negotiates with a state to develop a settlement agreement.
In October 2010, DOJ entered into a comprehensive settlement with the State of Georgia, which requires that the state cease new ID/DD admissions within nine months, transition all people in state facilities to community settings within five years, create additional Home and Community-Based Services (HCBS) Waiver slots, provide support for people with ID/DD living in the community to gain access to needed services, provide respite to families, establish mobile crisis support teams, and provide reasonable oversight of the community-based service system (Galbraith, 2010). In announcing the settlement, DOJ indicated it will be “a template for our enforcement efforts across the country” (Miller, 2010), indicating that DOJ actions affirm the Supreme Court’s decision that state budgets cannot be an excuse for not fulfilling its obligation to implement the Olmstead decision.
In another instance, DOJ brought suit against the Conway Human Development Center in Arkansas, claiming that residents were not being given enough of a chance to move to less restrictive community-based settings—such as group homes or family dwellings with professional assistance—and alleging dangerous practices (Matthews, 2011).
The priorities of the federal government establish DOJ priorities and determine how strongly DOJ can advocate during settlements. DOJ has not always focused settlement agreements on community living. In some cases, it has focused on addressing improvements to the institutions. For example, in 2008 DOJ intervened in a case regarding abuse in a large residential facility in Texas (the “fight club” case), and asked the State of Texas to spend $150 million to hire 1,100 staff to upgrade the quality of care in state institutions. Although the DOJ Settlement Agreement with the State of Texas includes a reference to the Olmstead decision and contains language in support of personal preference and community integration, its main focus was on improving institutional care and was not balanced by equal attention to ensuring that the state’s citizens have the community supports and services necessary for real choice between living in an institution and living in the community (NCD, 2011).
Courts: In addition to judging cases directly affecting institutional closure, courts may need to rule on related issues. For example, some local courts have upheld zoning laws allowing discrimination against small group homes; others have upheld the rights of people with ID/DD (Parish, 2005).
Court Monitors: Court monitors are charged with ensuring that the state is in compliance with any consent decrees. Thus, the extent to which the court monitor supports home and community-based services is based on rules laid out in the consent decree.
Centers for Medicare and Medicaid Services (CMS): CMS provides funding for institutions through the ICF/DD program. It has the ability to withhold that funding if the institution does not comply with its standards. For example, by decertifying the Howe Developmental Center in Illinois because it did not meet the quality standards, CMS made the institution ineligible for federal match, costing the state approximately $2.2 million per month ($73,000 per day). This was a major factor in the state’s decision to close the facility (Shannon, 2009).
To accomplish deinstitutionalization and system redesign, advocates, family members, and self-advocates need to come together, identify their vision and values, and develop a concrete plan that will move the state or community toward the identified goal.
Research supports the idea that community-based services have significant advantages over institutions in terms of quality of life outcomes and cost. Nevertheless, those are rarely the factors leading to a successful closure. According to the stakeholders we interviewed, most successful closures were based, at least to some extent, on clarifying the group’s values and sharing a commitment to community living. A statement of values might include these types of statements:
- A state should not unnecessarily restrict a person’s quality of life, social interactions, or basic human rights based on disability status.
- The social environments of people with ID/DD should be as much as possible like those of their nondisabled peers.
- An individual should not be required to give up the right to live in the community in order to receive needed services and supports
- People with ID/DD should be allowed to make decisions about their own lives to the maximum extent possible
- Research supports the fact that community settings result in improved quality of life in areas such as opportunities for integration and social participation, participation in employment, opportunities for choice-making and self-determination, quality and duration of services received, contact with friends and relatives, adaptive behavior, and other indicators of quality of life.
- The community is for EVERYONE. This includes people who have medical or behavioral issues that complicate their care and support.
Develop a Broad-Based, Well-Organized Coalition
BE IT RESOLVED by the Legislature of the State of Minnesota on behalf of the citizens of the state that the state apologize publicly to all persons with mental illness and developmental and other disabilities who have been wrongfully committed to state institutions, acknowledging that it regrets this history of institutionalization of persons with those disabilities, and that it commits itself in their memory to move steadfastly to help Minnesotans with those disabilities who in the future turn to the state for services to receive them in the least restrictive manner.
The coalition can start with a base of key membership groups, providers, family members, self-advocates, the DD Councils, legal aid agencies, and P&A agencies that join around expanding community-based services, stopping admissions to the state hospitals, and ultimately closing hospital beds and entire facilities.
Self-advocates are the best voices for deinstitutionalization. This text is from the resolution passed by the Minnesota Legislature and signed by Governor Pawlenty on May 25, offering an official apology to Minnesotans with ID/DD and their families, who were harmed by the experience of institutionalization in the state reaching back as far as the 1800s. The resolution is the result of decades of work by activists—especially the Remembering with Dignity (RWD) project based at Advocating Change Together (ACT)—who have sought to close institutions, create more community and family living options for people with disabilities and mental illness, remember those who lived and died in Minnesota’s institutions, and acknowledge that part of the state’s history.
Self-advocates worked with the State of Maryland to describe the benefits of community living to parents who were opposed to the closure of the Rosewood Center. In Maryland, if opposition by the individual, family member, or guardian is identified, a peer mentor (self-advocate or individual with an ID/DD living in the community) may be introduced to and paired with a resident to expose the resident to community living experiences.