The Oregon and Georgia Experiences

Deinstitutionalization: Unfinished Business provides a national perspective on the history of deinstitutionalization and the current status of the movement, as well as a review of issues related to strategy, cost, and building community capacity. The case studies in this section look at the experience of two states, Oregon and Georgia. Oregon has been working on these issues since 1987 and closed its last state institution in 2007. Georgia, on the other hand, began work on closing institutions in 2005 by committing to closing admissions to children. The state’s process was expedited by a Department of Justice intervention in 2010, with a settlement that outlined a five-year plan beginning in 2011.

The experiences in these two states illustrate some of the factors that affect success, the necessity of working with all stakeholders, and the importance of building community capacity and shifting the focus of service from large groups to individuals, thus ensuring a richer and more diverse life in the community than is possible even in a small institutional setting.

As part of this project, the research team conducted two focus groups—one in Georgia and one in Oregon—and 20 interviews that included 26 individuals: self-advocates and representatives of the state Developmental Disabilities Councils, protection and advocacy agencies, University Centers for Excellence in Developmental Disabilities, and legal aid groups. The interviews examined the implementation of deinstitutionalization around the country, specifically in Georgia and Oregon.

The interviews and the in-depth state studies focused on the political genesis of deinstitutionalization in Georgia and Oregon and the specific elements of implementation in those states.

Methodology

Key Questions

The focus groups and interviews used a set of key questions, including the following:

• Tell us about your specific experience with institutional closure.
• Based on this experience, what do you think are the most important keys to successfully closing an institution?
• What were the key barriers to successful closure, in your opinion?
• If you were to advise advocates who are working on this issue, what would be your key recommendations?
• How can quality be assured in the community? What are the best plans you have seen?
• How do you talk about the cost savings of closure?

Selection of Interviewees and Focus Group Participants

Individual participants were chosen because of their knowledge and experience with the closure of institutions. In some cases this knowledge was personal, and in some cases it was professional. The participants included leaders of all the key national organizations related to this issue, a former judge, state officials who have participated in past closures or are currently participating in closure activities, service providers, parents, and self-advocates who have lived in institutions.

Key Discussion Topics

The following key topics were discussed:

• Dealing with the concerns of parents
• Creating new person-centered housing options in communities
• Strategies for separating the provider of housing and the provider of services
• The cost savings of community living versus institutional living and the best way to talk about them
• Identifying and overcoming barriers presented by groups who are opposed to closing institutions
• Identifying the key elements of good transition planning
• Identifying the key elements of an effective quality assurance plan
• The role of the community—parents and advocates—in plan monitoring
• Ongoing development of community resources
• Funding of community resources in these financially challenging times

Key Discussion Threads

The following thematic trends emerged from the interviews:

• Closing institutions does save money, but most successful states did it because “it was the right thing to do.”
• The allocation of resources is a major issue—serving a relatively few people in institutions consumes resources that could serve many more people in the community.
• The most powerful act a state can take is to make the decision to “close the door” and not allow anyone else to become institutionalized. This changes the entire debate from “if” to “when” and “how.”
• Parents’ needs and fears must be identified and addressed. Helping parents see people with disabilities like those of their child living in the community is a powerful tool. This has been done successfully.
• Success is a process, not a single event. It takes time to build community capacity and the oversight systems that are necessary to ensure that people’s needs are met.

Oregon

Timeline

Oregon is a national leader in this field; it has no more large state institutions. The closure effort began in 1987, the last institution was closed in 2007, and the final activity required by the Staley settlement was completed in 2011. The following is a timeline for Oregon’s institutional closures and the development of a robust community-based services system:

1987: The state Office of Developmental Disabilities Services (ODDS) creates a diversion team. The goal is to prevent people from entering Fairview. At this time, the state was averaging 11 new admissions a month. At the end of the first year, this number had dropped to one to three admissions a month. Within two years, the institution had zero admissions.

1990: Fairview is decertified. Funds are turned back on when the institution agrees to a Plan of Correction and Reduction. The institution commits to staffing ratios and agrees to move 300 people over two years (1991–1993). In 1990 there were about 1,200 residents.

1991–1997: Another 600 people are moved, and community capacity is increased to support those with significant needs.

1996: Long-Term Planning Team convenes. Work teams are formed to look at issues related to labor, family with relatives at Fairview, unmet needs in the community, and the capacity required to support all people with ID/DD in the community. A plan is completed and delivered to the Oregon Legislature in 1997.

1997: Legislature agrees to close Fairview, which requires moving the last 300 people to communities.

1999: Legislature reinvests $10 million from the Fairview closure to increase direct-care wages by $1/hour, create capacity in counties to respond to people in crisis (adding staffing and funds for short-term diversion), and increase funds for family support from $3 million to $8 million.

1999: Legislature passes Fairview Trust Fund bill and directs the sale of the Fairview property at market value and establishes a trust. Interest from the trust is to be used to make housing modifications for people with ID/DD who are living in their own or their family’s home.

February 2000: Last person leaves Fairview.

2000: Five individuals with developmental disabilities and The Arc of Oregon file a class action suit (Staley settlement) claiming people in the community have been waiting too long for access to Medicaid services.

2001: Staley settlement establishes the entitlement of adults with ID/DD to a support services benefit, which is capped at $20,000 a year. People will self-direct and hire/contract. Support brokerages are established to provide personal agent support and serve as the fiscal intermediary.

2005: Oregon Legislature directs the department to determine the impact of closing the last ICFMR. Planning groups look at labor issues, costs of services, client needs, and community capacity.

2007: Oregon Legislature approves closure of Eastern Oregon Training Center.

October 2009: Last person moved from Eastern Oregon Training Center.

June 2011: Terms of the Staley settlement are successfully implemented. In 10 years, the number of people enrolled in community-based services went from zero to 7,000.

Focus Group

In May 2010, a focus group was conducted in conjunction with the National Council on Disability’s forum in Portland, Oregon. This group brought together the key players in the decades-long effort to close all institutions and develop and maintain a robust community system of services and supports. The focus group was made up of professionals and one self-advocate.

• Mary Lee Fay, administrator, Office of Developmental Disabilities Services
• Jack Morgan, former deputy administrator, Office of Developmental Disabilities Services
• George Braddock, president, Creative Housing Solutions
• Bob Clabby, former superintendent, Eastern Oregon Training Center
• Judy Cunie, self-advocate, former resident of an institution
• Kathryn Weit, executive director, Oregon Council on Developmental Disabilities
• Gary Blumenthal, NCD board member
• Joan Durocher, NCD General Counsel and Director of Policy
• Barbara Butz, facilitator, Daniels & Associates
• Steven Allen, technical coordinator, Daniels & Associates

Topic 1. The People Factor: Relationships and What Made Them Work

“We have longevity in all of our roles. Even when we retire we don’t really go away. We have leadership that has survived multiple governors. Partially because the program is low enough in the governor’s work that it can fly under the governor’s radar.”

“As architects, we had a lot of opportunities to correct things as we go. We didn’t have to wait until everything was in the perfect shape at the beginning. We are OK with good enough to get started and then make changes.”

“We had a guy that could lay out that vision—James Toews. We kept increasing the staffing because we were under the consent decree. James Toews was superb at laying out a vision.”

“The attorneys said you have to do it (deinstitutionalize). They could articulate it in a way that we could not. And they had the credibility that the state service agency didn’t have. That got it moving. If we have to do something...how best to do it. We had people in the community service system that were ready to expand. Had relationships, a lot of pent-up demand and frustrations. Readiness and eagerness to show that things could be done in the community. There was a lot of excitement and easy collaboration.”

“We worked with groups from the employment division, people could go to training, looking for other jobs on their work time, and the Governor did a hire first policy.”

“Before people left the institution the staff who would be working with them had to spend at least two weeks in training…often living at the institution. We did it because it was cheap for the provider but it turned out to be really insightful.”

“As a support person, with all the different organizations that support people with disabilities… hiring, training and retaining workforce is a challenge.”

Topic 2. Vision and Values

“So the debate wasn’t ‘should we.’ We didn’t look for compromise but we had to really listen. When families said ‘We don’t want to,’ we would end up translating it to mean, ‘I’m afraid of quality assurance, How will I know? Can I show up anytime I want?’ When you got past the conversation of ‘No, you can’t close the institution,’ you got to reasonable demands. We had a family-directed volunteer that would do reports. I don’t think it changed the quality of services but it helped buy-in.”

“It’s easier to serve people in the community and they deserve to have community life. It is pretty sad that you are put in prison because you have a disability. It has been proven over and over—what people can do if they are given the opportunity. There are so many things that we can contribute and we deserve to be a part of our community. We will always need to work on convincing people that we are of value to the community and that we deserve every opportunity that we can get.”

“We didn’t have a high-powered, well-funded parent group…against closure. …once we went through a very individualized process with the parents, parents saw the staff and providers as their friends.”

“When we talked to political groups we talked about the finances. But why we were doing it…it was values. Someone else said economics played in a big way. We have our attorneys to thank for that…. They said we had to do it. That got it moving. If we have to do something...how best to do it.”

“We had people in the community service system that were ready to expand. Had relationships, a lot of pent-up demand and frustrations, a readiness and eagerness to show that things could be done in the community. There was a lot of excitement and easy collaboration.”

“…disjointed incrementalism. As long as you keep the vision…you can keep going in the right direction. Persistence—they had a vision of closing the last institution 20 years ago.”

“Important that one or more people that really count need to believe that it needs to happen. It doesn’t necessarily have to be the governor.”

“If it wasn’t a civil right, it was based on an understanding that people needed to be in the community.”

Topic 3. Strategies and Program Structure

“We are not a private market. In the aging world only 30 percent of the money is Medicaid. In our world it is much more. We have to be very precise because a provider can’t build and then wait for people to fill the slots. We are building and doing at the same time.”

Oregon started a state-operated community-based program. This program is designed to serve only people for whom there is no other option.

“We had started this in 1990 when we were closing institutions for kids because we had two populations that the community system wasn’t ready to take care of—people with significant medical needs (ventilator dependent) and people with significant behavioral issues. Throughout every downsizing period we added one to two group homes. They were three to five people ranged within a 100-mile radius. Same as other group homes but run by state staff. We now have 136 people. We have a lot of families that say, ‘I want State Ops,’ but it is based on need. Now it is mostly a safety net. Only a few people stay there for a long time (but it is because the needs continue). We have very few medical homes; it is now mostly behavior support needs. Most are now coming in from criminal, corrections, forensic psychiatric review boards and with co-occurring mental health issues. State Ops can’t say no. There are people with the same challenges in the community…but one of the criteria is that we have exhausted looking for a provider who would agree to support them. 138 out of 10,000 are in State Ops.”

“Fairview had 3,000 in 1987. First thing that we needed to figure out [was] crisis response. Who went into the institution because there was no other option? Before we had good crisis response, 10 people a month were entering institutions...six years later it was zero.”

Three key teams did a tremendous amount of work in the actual closure. The Transition Team took the lead in ensuring that people were up to date with physicals and initiated a series of transition meetings with the person, parents—everyone involved. The Housing Team was in charge of staff, timing, and logistics. The Development Team developed person-centered plans for everyone, and that’s how Oregon did community designs: one person at a time. The team focused on understanding individual needs, compatibility, what community the person has family in. The team tried to ensure that doctors and supports were in place.

Topic 4. Housing

“[We]separated housing ownership from the selection of provider. This has turned out great because we can stop licensing a provider and people don’t have to move because the house was not owned by the provider.”

“We brought people in who really know housing. Our state housing agency provided the funding. Several advantages: They knew the issues [and] they had the resources. They could talk effectively with the legislature. They could deal with housing much better than a service provider. We hired people in the housing industry. Housing was owned by organizations that specialized in owning and managing property rather than the service providers. They knew what needed to be done to maintain housing/property values. Those people were the intermediaries….”

“[The] contractor was [the] point of entry for neighbors who were scared. They thought property values were going to tank. They were most concerned about cars and staff. They were OK with diversity, even weird diversity. They were worried about staffing coming and going, playing their boom boxes, flicking cigarette butts, taking all the parking spots on the street. We taught our contractors to really talk to the neighborhood. In one case the church adopted the house and it really helped create community.”

“In a couple of cases we used local housing authorities. Housing staff in the agency [were] really important. They knew the business. They knew the DD housing needs and the type of things that housing authorities usually build.”

“Paying attention to not just staffing, also housing, affordability, how to make it work. [We] took advantage of other financing options.”

Topic 5. Strategies that Paid Off

“Design focused on conforming to the look and feel of the neighborhood. Structure and paint had to blend in with what existed. Landscaping was considered important; they did not attempt to cut costs by omitting landscaping, which was a big issue for the neighborhood.

Confronting county fears was also seen as a priority. The state government defines programs and provides funding; counties administer the programs. Counties had concerns about taking care of ‘these folks’ (people with ID/DD who were leaving an institution) and having them in the community. They were concerned about whether funding would be adequate. People tended to compare the projects with downsizing in corrections and mental health, which did not have enough funding in the community and were not done well. Fears about personal safety and property values were also a factor.”

All the participants in the litigation process communicated with each other regularly and informally. State attorneys general came and went—most of them were portrayed as people who wanted to do the right thing. The DD agency did not get to pick its attorneys but could convince them that they should represent the agency as the customer.

"If we fight this and win we will have a very expensive institution and will have spent millions of dollars to get this.”

Part of the role of litigation was sustaining the focus. The focus group members believed that it was very important to concentrate on individuals and their rights. Litigation made it clear that serving a small number of people in institutions took a large percentage of resources in terms of both financing and staff time. For 10 years, a large percentage of the energy of the staff had been used for people in institutions.

Every institution is different. Strategies for closing Eastern were very different from those used at Fairview. Oregon had begun person-centered planning with its DD clients. Staff saw closure as a completion of their job. The vision never changed. The vision combined two elements: closing the facility and doing so in a way that would strengthen the community system. With calculated planning, they aligned resources to strengthen the general DD system as well as the services former institution residents were going to use.

After the closure of Fairview, the next lawsuit focused on access to home and community-based services. The timing was perfect. Some states see a lawsuit as a personal insult; others can see it as an asset in getting the resources they need.

“We didn’t start out with a closure plan. We started out with a downsizing plan. We could move down the path, gave us some experience. People didn’t have to make an enormous decision. At the same time the economics are working on your side. As you downsize, the cost per person increases with no end in sight. By the time the legislature actually went to close the institution, half the people were already gone.”

The focus group saw this as overcoming opposition by articulating a simple vision.

Topic 6. What’s Next?

The self-advocate said, “Attitudes.”

Now that Oregon has a community-based system, it becomes a question of what people are doing in the community.

“Oregon needs a better employment policy. For a while, when the state was closing Fairview, it capped the number of people in sheltered workshops, but then the focus shifted to final closure. Some believed that the culture had changed enough so that employment would just happen and that the move to person-directed services would create a demand for jobs, but that didn’t happen. The team has collected data and is now focusing on expectations about employment and training to an ‘employment first’ policy. The Medicaid Infrastructure Grant (MIG) is providing funds. They have nine training teams and are still adjusting the rates so they support the outcome they want and don’t leave people vulnerable.”

The nature of the conversation changes after closure. Moving people out of institutions is a different conversation than the one that occurs when people are no longer in institutions. You move on really quickly. There are still battles, but they are different ones—primarily about quality assurance.

The focus group agreed that systemic change is necessary to avoid going backwards. The team is seeing people slide back to segregated classrooms and agreed that more attention should be paid to early education.

The focus group suggested that Oregon does not support families in a planned way. The state offers some waivers but should invest more in families. There is a growing awareness that the state needs to be thinking more holistically. Most of the things you do for the support provider systems (such as backup systems), you should also do to support family providers.

Access to health care and the quality of health care are ongoing issues.

“Moving backward into self-contained classrooms feeds into problems in the adult system, such as the need to cut transition programs and get employment on the radar screen. The DD system should pick up where the education system drops off and be more aggressive as a system to take on the education system.”

“They don’t have nearly the structure or sense of what they are trying to accomplish with children that they have with adults. They have 5,000 kids enrolled in case management, but they don’t do a very good job. School districts are aggressive in pushing back. Lawyers find it lucrative to get contracts with school districts.”

“The DD system did a good job making changes in pediatric nursing homes. In the past, an adult average stay was four months; for children it was seven years. Now they’re backsliding.”

“Gated communities represent a new type of segregated housing. People with resources are setting up these communities because they are not getting the services they need in the community. In Oregon, the state is pushing back against a group that is trying to set up a gated community for people with ID/DD. But, it is not clear whether the State is on firm legal ground in its pushback. The state has established rates that would make it difficult to sustain something like this—they don’t want to provide a financial incentive to group people together. Self-advocates said they are working on getting younger people involved so they can say they don’t want this. They want something different in their lives.”

Advocates and professionals are concerned about how to make sure people get the services they need when they are spread out in the community.

Quality assurance (QA) is a challenge. It is hard to invest in infrastructure when individual needs are not being met. The counties are statutorily involved in running the system. On the aging side, half the programs are run by the state, half by counties. It is not clear which is better.

“I don’t have a lot of faith in the county system. A lot of attention on excluding people from work who have certain conditions, etc. It all depends on the staff. Need staff that buys into the system.”

“Depends on leadership. not sure what the best system is. It is a challenge when you have 32 different entities.”

The system depends on case managers for quality assurance—to promote individual goals and look for incidents that indicate poor quality. The team is less into quality improvement than in the past. They use abuse information, serious event reports, licensing data, and customer surveys, but that doesn’t provide a complete picture. Their approach is more protective now. As they train on person-centered strategies and positive interventions (rather than physical intervention), they lay the groundwork for higher expectations. The team has laid the groundwork, but they don’t have the full QA system in place as they envision it.

Topic 7. Advice to Other States

“Close the front door.”

“Get some rest.”