Set a Vision and Comprehensive Agenda

As discussed previously, having a clear vision based on shared values is critical to all of the work you do as a group, including the establishment of a comprehensive agenda. This agenda should include the key stakeholders, identification of stakeholders who are not yet at the table but should be, consensus on leadership of the group and the group’s structure, and the basic goals and objectives in all areas of work. This would include creating the political will to close institutions, developing specific strategies, creating community capacity, and building a quality assurance plan that engages parents and other stakeholders in the process.

Stay focused on the goal: Begin with the most comprehensive vision of system of care in the community for people in state institutions and on waiting lists in the community. In establishing this comprehensive vision of the system, do not compromise on the vision or the values you have established; the political process tends to modify and cut down. You may need to compromise at some points in the process on “detail” or “timing,” but the vision must remain clear.

Create a written, consistent deinstitutionalization platform and outline of principles. The objective is that people with ID/DD have the right to live in the least restrictive setting. Strong communications, including written position papers and a deinstitutionalization platform that can help keep the coalition unified and anchored, are critical. The platform can 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 self-determination, full empowerment of families, self-advocacy, implementation strategies to effect real inclusion, and a commonsense plan for reform.

Several key strategies, including the following, have worked well in states that have closed institutions or are in the process of closing them:

Frame the Debate: It is important that vision and values frame the debate. This action directs the focus on the individual and his or her rights, and away from the self-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 the individual with disabilities—not the numbers, the economic benefits to the state, or the impact on the economy of the community that houses the institution. The individual is the core of the litigation surrounding institutional closure.

Define the Choice; Not “If” but “When” and “How”: Based on the legal issues involved and the rights of the individual, the state can choose to frame the discussion in this way and to focus the community’s attention on the important issues that surround the closing of an institution: capacity building, developing a quality assurance process, and so forth. This allows the process to include 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.

Close the Front Door: States using the deinstitutionalization strategy of shutting off new admissions have generally faced less opposition than states that close the doors in the beginning of the deinstitutionalization process. To accomplish this, state officials and stakeholders must identify the pathways leading to institutionalization and work to provide alternatives. Some states (e.g., New Hampshire, Georgia, Michigan) using this strategy have chosen to focus on children first, and then move on to adults. However, in Missouri, with no admissions in more than two years, the state still has six state-run institutions. Representative Scott Rupp introduced legislation to close the facilities within five years.

Consider Legal and Legislative Strategies

Coalitions around the country have utilized or benefited from a legal strategy with the involvement of the State’s P&A agency, legal aid organizations, and/or DOJ. Federal policy and programs are evolving to support more people with ID/DD living in community-based settings. In July 2011 DOJ released a technical assistance guide to the Americans with Disabilities Act (ADA) and the Olmstead decision. It is an authoritative guide that advocates may want to use as part of their campaign. The guide might be useful to quote in briefs in court, in meetings with government officials, in letters to the editor, and in opinion editorials. It represents the official position of the highest law enforcement agency in the country.

Create a Legal Strategy

In almost all states where deinstitutionalization has occurred, litigation has played a strong role and 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 services by decreasing waiting lists for community placement, downsizing institutions, and challenging restrictions on the scope of services so people with ID/DD 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 negotiations. The Olmstead decision has often been called the Brown v. Board of Education of the disability rights movement. In June 2009, in commemorating the anniversary of the Olmstead ruling, President Obama stated:

In developing a legal strategy, several tools and recent court decisions may be helpful.

DOJ has recently posted a legal rights resource guide on the ADA page of its Web site.

In October 2010, DOJ entered into a comprehensive settlement with the State of Georgia which requires the state to cease new ID/DD admissions within nine months, transition all people in state facilities to community settings within five years, create additional 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. In announcing the settlement, DOJ indicated that it will be “a template for our enforcement efforts across the country,” indicating that DOJ actions affirm the Supreme Court’s decision state budgets cannot be an excuse for 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 are not being given enough of a chance to move to less restrictive community settings—such as group homes or family dwellings with professional assistance—and alleges dangerous practices. The court, however, sided with the State of Arkansas, and the Conway Human Development Center will remain open.

In Illinois, a groundbreaking consent decree in Ligas v. Hamos was finalized June 15, 2011, in the Chicago federal district court. The decree gives people with ID/DD, who currently live in large private but state-supported facilities known as ICFs/DD the choice to move into small community-based settings with the necessary supports. It also requires that an additional 3,000 people with ID/DD who are currently living at home be provided with community-based services.

DOJ has filed a motion to intervene in Steward v. Perry, a class-action case brought on behalf of approximately 4,500 people with ID/DD who are living in Texas nursing facilities and are being denied the opportunity to live in integrated community settings and receive active treatment while confined in these facilities. The State of Texas has recently filed anopposition to the DOJ motion.

For more information about legal issues, see Section 2 of the Deinstitutionalization Toolkit.

Develop a Legislative Strategy

In several states, advocates have worked with state legislatures to pass reform. This involves building relationships with legislators through one-on-one meetings and using personal stories. As the examples below illustrate, legislative work can focus on many different strategies: clarifying state values and intent in regard to compliance with federal law, studying the issue and making recommendations, and engaging in the financing and budgeting aspects of service expansion and institutional operations.

In the spring of 2005, the Georgia General Assembly passed House Resolution 633 (HR633), a resolution drafted by Georgia Children’s Freedom Initiative. It urged the state to develop a plan to identify, assess, and plan appropriate community supports for people under the age of 22 who live in nursing facilities, ICFs/DD, and private and public hospitals. 

In Kansas, advocates were successful in getting the Developmental Disabilities Reform Act passed in 1995. This act established the policy of the state “to assist persons who have a developmental disability to have: (a) Services and supports which allow persons opportunities of choice to increase their independence, productivity, integration and inclusion into the community; (b) access to a range of services and supports appropriate to such persons; and (c) the same dignity and respect as persons who do not have a developmental disability.”

In 2009, the Washington state legislature passed HB 1244, directing the Governor’s Office of Financial Management to conduct a study of the feasibility of closure of state institutions. The study looked at such questions as the following:

1. Maintain quality of care: Will people and families receive equal or better services and supports than they are currently receiving?
2. Future service demand: Are there people in the future who will need these services and supports?
3. Regulatory and policy environment: To what degree are there federal and state regulatory and policy pressures for various alternatives?
4. Financial impact: What are the current and projected future fiscal impacts of various alternatives?

Become Medicaid Experts

It is important to know how the current system operates and what options are available within it that support individual choice and community living. It is best for someone from legal aid or the P&A agency to take the lead for the coalition in this area, but it is important that all advocates educate themselves so they can articulate what exists and what is needed as they speak to their legislators and others who can influence the closure decision.

Build Your Case

Provide cost data and the numbers of people who could be served in the community, as well as on the quality of life and health outcome benefits of living the community instead of in state institutions. Provide information on Olmstead and the ADA. It is important to debunk the many myths out there and to replace them with facts and a clear understanding of the civil rights issues at the core of this discussion.

During periods of budget tightening, some states are considering closing institutions in order to save money. This approach has several drawbacks:

• It leads opponents to claim that the state is not willing to commit the resources needed to care for vulnerable citizens.
• It leads politicians and policymakers to conclude that savings from institutional closure can be used for other state priorities. Advocates should ensure that any savings from closure continue to be dedicated to supporting people with ID/DD in the community. This will allow the state to develop a more robust community system, invest in quality assurance, and serve people who are on the waiting list.
• It is easier for legislators to hold their ground against opponents when the legislators believe that closure is “the right thing to do” rather than “the least costly thing to do.”
• It allows states to lose sight of the fact that the goal of institutional closure is community integration. It is not enough to close an institution and move people to another large institution or even another institutional setting, even if it is a smaller institution in a “community setting.”

For more information about community, see Section 4 of the Deinstitutionalization Toolkit.

Line Up Leadership

Advocates need to gain support for their reform platform from the state agency, the governor, and key legislative leaders and staff. The coalition cannot proceed with its agenda without this vital step. Make sure that this engagement is bipartisan. To engage leaders, families must personally visit and share their stories.

Within the constraints set by the legislature, the DD Council leadership is in the position to set a vision for the department. It can develop community-based options, encourage choice of community to reduce new admissions, or support the status quo. In Oregon, advocates worked very closely with the DD commissioner, who put a moratorium on admissions to the state institutions and eventually closed all ID/DD institutions in Oregon.

It is also important to engage other DD core partners such as the P&A agency, the University Center for Excellence in DD, and the DD agency in your area.

Understand and Work Within the Political Environment

It is important to understand the political environment and the interests and position of all stakeholders on these issues. Many factors are at play in the closure of an institution, including the fiscal environment of the state, the economic impact on communities, and the emotional needs of family members who are concerned about making changes that will affect their loved one.

Seek Out Individuals and Groups with Different Perspectives on the Issue

Hold informal meetings with local businesses, families, union representatives, and legislators for the purpose of information sharing, negotiation, problem solving, and potentially engaging them in the design of the deinstitutionalization plan. Avoid a bunker mentality and do not assume that simply because you do not engage individuals and groups with different positions they will not pay attention to system redesign or oppose deinstitutionalization. Have an open-door, problem-solving approach with these individuals and groups without compromising on principles. Families must be shown real examples (not just data and examples from other states) of individuals just like their family members who are living successfully in the community. Communicate with families about their specific concerns, which could include access to regular health care and dental care, safety, and continuity and quality of care.

Engage and Include Parents

It is important to recognize that some parents have extreme doubts about moving their son or daughter from the institution. Address the concerns with empathy, information, and honesty. The Georgia Children’s Freedom Initiative has effectively worked with parents not only through clear communication and facts but with actual tours of community living arrangements. It now includes several involved parents who once had misgivings about deinstitutionalization.

Georgia Parent Journeys: From Fear to Fulfillment

In Oregon, state staff engaged the parents of people who were in institutions slated to be closed, listened carefully to their issues and concerns, then worked to engage them in the closure discussion and process. The Oregon advocates felt that it was important not to let the fears of parents dictate policy, but made every effort to address each parent’s concern individually, to engage them in the discussions, and to ensure that they had a voice in developing the transition plan for their child. They also worked to engage parents in ongoing quality assurance activities after community placement.

Address State Employee and Local Community Issues

The loss of jobs in a community is often a powerful obstacle to gaining legislative support for closure. At the same time, it is important to be clear that, ultimately, decisions about institutional closure must be based on what is best for people with ID/DD rather than the related workforce issues. States often use public education campaigns as part of their efforts to address community opposition to deinstitutionalization. However, states cannot wait until opposition has been resolved to implement deinstitutionalization.

Several approaches have been used to mitigate economic impact. Some states operate part of the community-based system, thereby allowing these states to transfer unionized public employees out of institutions and into community-based services. The American Federation of State County and Municipal Employees (AFSCME) reported, as of June 1996, that more than 40 percent of the states have maintained responsibility and a role in the provision of services in community-based settings rather than relying solely on the private sector for community services. AFSCME reported that 13 states—Arizona, Colorado, Connecticut, Louisiana, Massachusetts, Minnesota, Mississippi, Nevada, New Hampshire, New York, Oregon, Rhode Island, and Texas—operate small community-based residential facilities for persons with developmental disabilities. Other states, such as New Jersey and Iowa, do not own the community residences, but provide state employees to staff them.

States have also utilized aggressive retention and job placement for displaced workers. For example, when closing Rosewood, Maryland instituted an outplacement process for employees, including job training and placement at nearby psychiatric institutions. The DD agency reached out to other state agencies and private providers to obtain job placements for state employees. Oregon also was aggressive in providing outplacement services to staff affected by closures, and its governor at one point instituted a “hire first” policy for employees affected by the closing of state institutions.

With careful planning, some institution employees can work in the community services developed to serve former institution residents. Institutions are often located in rural areas. Although some former residents will continue to live in that area after the closure, others will return to a community closer to their families. As a result, some of the community jobs will be located in communities other than the ones in which the institution jobs were lost.

It is also important to address local community issues related to institutional closure, such as the economic impact of closure as well as future land use. Examples from other states include former institutional facilities that have been converted to use as business/industrial parks or condominiums with golf courses. Again, as with workforce issues, it is important to be clear that decisions about institutional closure must be based on what is best for people with ID/DD.

Employ Timely, Targeted Communication, Public Education, and Media Strategies

Proponents must mount a major campaign to confront the stigma, misinformation, and negative attitudes associated with deinstitutionalization. Proponents must confront and change attitudes while creating a broader understanding of the nature of community-based living through public testimony and personal conversations with legislators. The use of individual stories can often change attitudes, and having self-advocates tell their own story is the most powerful strategy of all.

Myths and misunderstanding about how people can be served in the community and the effectiveness of community-based services can be difficult to overcome. Again, self-advocate and family testimony is a powerful tool, especially when the discussion includes national studies offering sound assessments of effective interventions, treatment models, and outcomes.

Effectively Using the Media

Many advocates for deinstitutionalization have used the media to influence public opinion. To get the media’s attention, advocates must utilize the same strategy of using personal stories faces, not facts. These stories must be about people who have left an institution and are living successfully in the community. Stories may also highlight people who are living in institutions and look no different from those living in the community. The Georgia Children’s Freedom Initiative effectively used the media to highlight its campaign to close all children’s beds in Georgia.

Here are examples of this strategy in action:

Wall Street Journal article: “Babes Among Elders: Nursing Home Kids”

Through investigative reporting, the media have been credited with prompting major changes. For example, Mary Beth Pfeiffer has published a series of investigative reports in the Poughkeepsie Journal about the slow pace of deinstitutionalization at Wassaic Campus of the Taconic Developmental Disabilities Service Office, the high cost of institutional care in New York State, and the role of Medicaid overpayments 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).

Finding parents who initially opposed deinstitutionalization and now are satisfied with the services their child is receiving in the community and who will speak to media about their experience can provide powerful testimony.

For example, a mother and daughter find new life after deinstitutionalization in Illinois:

A Kansas mother describes her transformation from vocal opponent of closure to supporter: