The State Experience: Introduction

This section of the Deinstitutionalization Toolkit reveals the state’s experiences of the closure process from the perspective of advocates and leaders involved in closing institutions and building community support systems in Oregon and Georgia.

The Deinstitutionalization Toolkit: Case Studies: inBRIEF is an introduction to these case studies that provides information about the methodology, key questions, topics, and discussion threads used in the evaluation of Oregon and Georgia. The Deinstitutionalization Toolkit: Case Studies – inDEPTH explores the experiences of individuals directly affected by the deinstitutionalization process. These voices and reflections are of eight individuals with intellectual disabilities and developmental disabilities (ID/DD) who are most affected by the move from state institutions to the community.

The State Experience: Closing Institutions and Building Community Support Systems

Oregon

Oregon is a national leader in this field and currently has no large state institutions. This effort began in 1987; the last institution was closed in 2007, and the final activity required by the Staley Settlement was completed in 2011. Below is a timeline for the Oregon Institutional closures and the development of a robust community-based services system:

1987 – State Developmental Disabilities (DD) office creates Diversion team. The goal is to prevent people from entering Fairview. At the 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 was decertified and got funds turned back on by agreeing to a Plan of Correction and Reduction. The institution made commitments to staffing ratios at Fairview and agreed to move 300 people over two years (1991–93). At that time, it housed about 1,200 people.

1991–97 – Continued with approval to move another 600 people, increasing community capacity to support people with significant support needs.

1996 – Long-Term Planning Team convened. Work teams formed to look at issues related to labor, family with relatives at Fairview, unmet needs in community, and community capacity required to support all individuals in community. Plan completed and delivered to Oregon legislature in 1997.

1997 – Legislature agreed to close Fairview. This act required moving the last 300 people to communities.

1999 – Legislature reinvested $10 million from Fairview closure to increase direct care wages by $1.00/hour, create capacity in counties to respond to people in crisis (add staffing and funds for short-term diversion needs), and increase funds for family support from $3 million to $8 million.

1999 – Legislature passed Fairview Trust Fund bill. Directs department to sell Fairview property for market value and establish a trust. Interest from trust is to be used to make housing modifications for people with ID/DD living in their own home or a family home.

February 2000 – Last person leaves Fairview.

2000 – Disability Rights and Arc Oregon filed class action suit (Staley Settlement) claiming that individuals in community have been waiting too long and not getting access to Medicaid services.

2001 – Staley Settlement was agreed to. Settlement establishes entitlement of adults with ID/DD to support service benefit. Benefit capped at $20,000 a year. Individuals will self-direct, hire/contract. Support Brokerages established to provide personal agent support and serve as fiscal intermediary.

2005 – Oregon Legislature directed Department to determine impact of closing the last Intermediate Care Facility for People with Developmental Disabilities, Eastern Oregon Training Center. Planning groups look at labor issues, costs of services, client needs, and community capacity.

2007 – Oregon Legislature approved closure of Eastern Oregon Training Center.

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

June 2011 – Staley Settlement successfully completed. In 10 years, the number of people enrolled in community-based services went from 0 to 7,000 people.

Time and Place

In May 2010, a focus group was conducted in conjunction with the National Council on Disability’s (NCD) conference 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. Below is a summary of this session, identifying the participants and using the voices of participants to tell Oregon’s story.

Participants

This focus group was made up of professionals primarily, with some advocates included.

• Mary Lee Fay, administrator, Office of Developmental Services
• Jack Morgan, former deputy administrator, Office of Development 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 staff
• Barbara Butz, facilitator, Daniels & Associates
• Steven Allen, technical coordinator, Daniels & Associates

The Discussion

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 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…challenge in 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 (VOR) 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 have 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. [There was 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 those individuals for whom there was 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. There 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, forensics 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 is 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:

• The Housing team, which was in charge of staff, timing, and logistics.
• The Development team, which developed person-centered plans for everyone. That is how Oregon did community designs—one person at a time. They focused on understanding individual needs, compatibility, what community they have family in. They tried to ensure that doctors and supports were in place, and so on.
• The Transition team, which took the lead on ensuring that individuals are up-to-date with physicals, and so on. They also initiated a series of transition meetings with individuals, parents…everyone involved.

Topic 4: Housing

“…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, 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....”

“Contractor was 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 staff 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 was really important. They knew the business. They knew the DD housing needs and the type of things that housing authorities usually build.”

“Paying attention not just to staffing, also housing, affordability, how to make it work. 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 seen as important and they did not attempting to cut costs by omitting landscaping, a big issue for the neighborhood.

Confronting county fears was also seen as a priority–the state government defines programs and provides funding. Counties must administer the programs. Counties had concerns about taking care of “these folks” (people with ID/DD who are leaving the institution) and having them in the community. They were concerned about whether funding would be adequate. The projects are compared to the downsizing in corrections and mental health where there was not enough funding in the community and it was not done well. Fear of personal safety and of property value was also a factor.

All of the participants in the litigation process regularly and informally communicated with each other. State Attorneys General came and went—most of them were seen as people who wanted to do the right thing. The DD agency did not get to pick its attorneys, but it could convince them that they should represent the DD 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.” [[I don’t understand the relevance of this quote.]]

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

Every place is different. Strategies around Eastern were very different than 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, but doing it in a way that would strengthen the community system. Calculated planning was used to align resources to strengthen the general DD system, but also could be used to strengthen services that former residents were going to use.

Closure of Fairview was completed and then 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. Other states can see it as an asset in getting the resources that 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 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 it was closing Fairview, it had capped the number of people in sheltered workshops, but then the focus shifted to final closure. There was an idea that the culture had changed enough so it would just happen and also when they moved to person-directed services people would be demanding jobs…but that didn’t happen. The team has kept data. They are now focusing back on expectations about employment. They are training to an “employment first” policy. The Medicaid Infrastructure Grant is providing funds. They have nine training teams. They need to set rates that have the right rates to support the outcome they want but doesn’t leave people vulnerable.

The nature of the conversation changes after closure. Moving people out of institutions is a different conversation than when people are not in the institution and they don’t plan to go in. That’s the conversation that Oregon is in now. You move on really quickly. It is no longer a battle over the institution. Still have battles…but different battles—quality assurance questions.

The group felt that systemic change is necessary so that the system does not go backward. The team is seeing people slide back to segregated classrooms. It was felt that there should probably be more focus on early education.

The group suggested that Oregon doesn’t support families in a planned way. It has some waivers, but there needs to be more investment in families. There is a growing awareness that the state needs to be thinking more holistically. Most of the same things that you do for the support provider systems you need to do to support family providers (such as backup systems).

Health care and access to health care is an ongoing issue.

Moving backward into self-contained classrooms feeds into what they need to deal with in an adult system, such as a need for cutting transition programs and getting employment on the radar screen. DD needs to pick up where the education system drops off and needs to 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.

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

Gated communities represent a new type of segregated housing situation. People with resources are setting these things up because they don’t see the services they need in the community. In Oregon the state is pushing back against a group that is trying to set something like this up. But they don’t know if they are on firm legal ground in their pushback. The state established rates that would make it difficult to sustain something like this. They do not want there to be 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.

They are concerned about how to make sure people get the services they need when they are spread out.

Quality assurance (QA) is a challenge. It is hard investing in infrastructure when individual needs are not met. The counties are statutorily involved in running the system. On the aging side half the programs are state run, half counties. It is unclear 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.”

For QA, the system is dependent on case managers. They are using them 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 give you 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 the groundwork built but they don’t have the full QA system in place as they envision it.

Topic 7: Advice to another state

Close the front door.

Get some rest.