Georgia was selected for a case study because it had recently signed a statewide settlement agreement with the United States Department of Justice (DOJ) to provide community alternatives to institutionalization for people with developmental disabilities and mental illnesses. DOJ has indicated that this settlement agreement will serve as its template as it works with other states. The agreement also provides services for people at risk of institutionalization, to prevent future admissions to state hospitals. The negotiation process with DOJ and the state of Georgia was heavily influenced by stakeholder groups, including the Georgia Developmental Disabilities Council and the Georgia Advocacy Office (the state protection and advocacy agency).
Under the agreement, the state stopped admitting people whose primary diagnosis is a developmental disability into state hospitals in July 2011 and instead placed them directly into community services. The settlement agreement builds on the work of the Georgia Children’s Freedom Initiative, which was launched in 2005 to focus advocacy and action on moving all children in state institutions into community-based settings. The coalition formed to advance the Freedom Initiative had immediate success by getting House Resolution 633 passed by the Georgia House of Representatives, urging the State to develop a plan to serve all children in community-based settings that focused on family reunification. The coalition did not stress cost savings because of members’ belief that it might not be cheaper to serve people in the community. Rather, the coalition argued for the human and civil right to live in the community and worked on building a consensus around these concepts. For example, the coalition held a summit in 2005, with more than 100 participants, to raise awareness, discuss the alternatives, and build political will. The coalition worked closely with parents who were reluctant to move their children to community-based settings, organizing tours of community placements that proved to be very successful in convincing these parents of the possibility of successful community placement. All the parents wanted assurance that the people who were going to serve their children would make a significant commitment, rather than having shifts of strangers rotating through.
When the initiative was established, about 45 children were in state hospitals; only 5 or 6 are still there, as a result of parental concerns. The coalition documented all the stories in a video of the children who came out of the institutions. The remaining challenges include capacity in rural areas and parental rights issues for children still in institutions.
The state has halted admissions to state hospitals for all children under 18. Crisis respite homes are being set up in the community in response to the DOJ settlement. The crisis teams will be able to respond anywhere in the state within 90 minutes. Because of the settlement, people leaving the hospital will get priority. Everyone in state facilities is guaranteed a waiver slot. Thirty slots were set aside for youth aging out of foster care.
The coalition has continued its legislative advocacy, making informal presentations to groups of legislators around the state. Members have been educating legislators about the DOJ settlement, and a tour for legislators is being planned. The biggest challenge the coalition sees for the future is ensuring community capacity.
Everyone interviewed during the site visit in Georgia said that the impact of DOJ is very important. It has had an impact on the governor’s staff and agency staff. DOJ is driving the conversation. The DOJ settlement has focused on where people sleep, not how they live. Without the settlement, the pace of closure would have been much slower. Community capacity would not have increased and there would not have been a moratorium on admissions.
The parents and guardians who attended the focus group expressed their strong support for their family member living in the community, although they deal with the system in different ways. They faced enormous challenges and had to do a lot of finagling to get it right. Georgia has some exemplary providers, who are under pressure to expand. They recognize the need to find ways to help others create similar programs. However, they see provider rates and program infrastructure as huge hurdles in expanding quality services.
Georgia has increased the monitoring, quality improvement, and control of community-based placements. A state official said one of the things that helps states be successful is to develop a “healthy obsession with quality.” The state needs to be clear about what it is and is not willing to fund. When Georgia has an unsuccessful transition, the state conducts a root cause analysis to figure out what went wrong. The state is also expanding the quality improvement process to provide technical assistance to providers through Quality Improvement Regional Councils staffed by the Delmarva Foundation, under contract with the state. Providers who have already participated in a Quality Enhancement Provider Review (QEPR) can ask Delmarva to provide additional technical assistance in a specific subject area such as documentation, policy and procedures, or developing person-centered supports and services. Georgia providers are requesting additional training and technical assistance. Providers, family members, and staff officials know that infrastructure and capacity are not adequate. The state is exploring the idea of bringing in national providers to increase capacity. Access to services is a problem throughout the state, but especially in rural areas. The state has been conducting a needs assessment—mapping out where people with ID/DD are and how many are more than 10, 20, or 50 miles from the nearest provider.
In summary, the DOJ settlement has moved the Georgia deinstitutionalization effort into high gear with a rapid rollout. Challenges include ensuring a uniform quality standard for services throughout the state and developing adequate capacity to serve people where they want to live.
In May 24, 2011, a focus group was organized with the help of the Georgia Developmental Disabilities Council. The group, convened at the Shepherd Center for Rehabilitation in Atlanta, brought together the key players in the effort to close institutions for people with ID/DD. The following is a summary of this session. This participants were—
- Sam Trogdon, parent of Susannah Trogdon
- Allison Peters Whittle, guardian of Nicki Raisler
- Nicki Raisler, self-advocate
- Susan Jamieson, Mental Health and Disability Rights, Atlanta Legal Aid
- Eric E. Jacobson, Georgia Council on Developmental Disabilities
- Anna Watson, Georgia Diagnostic Classification Center
- Victoria Richbourg, Serenity BHS and a parent
- Daniel Crimmins, Center for Leadership in Disability, Georgia State University
- Nancy Vara, parent
- Nola Sayne, self-advocate
- Eddie Towson, Lead On Quality Assurance, Georgia Developmental Services
- Renita Bundrage, parent
- Ruby Moore, Georgia Advocacy Office
- Barbara Butz, facilitator, Daniels & Associates
- Ellen Piekalkiewicz, facilitator, Daniels & Associates
Topic 1. Personal Experiences of Self-Advocates and Parents of Children with Developmental Disabilities
Self-advocates, parents, and guardians who attended the focus group expressed their strong support for people with ID/DD living in the community and not in institutions, although they have dealt with the system in different ways. They faced enormous challenges and had to be very persistent. There are some exemplary providers, and they are under pressure to expand. The participants recognized the need to help other providers create similar programs. Two significant hurdles are program infrastructure and the rates paid to providers.
“Many of us don’t live in institutions but lead institutional lives.”
The Georgia P&A agency was working with families and the State to determine where people were located in nursing facilities. Their data are not complete and not every person was accounted for. Some Georgia children are in institutions in Alabama. One parent’s son is still living in a nursing home in Alabama, where he was placed as a child. She is working with the state to get her son into a community-based setting.
One self-advocate’s sister is in a group home, but she wants her to come home. Difficulties with program infrastructure are blocking the move. The goal is to have the sisters live together with the self-advocate’s guardian as a family unit.
One self-advocate attends a day program and is trying to get a job.
One client is home after a bad experience. She had never lived in an institution but did briefly live in a group home. She did not do well in the group home and was not thriving. Her father says that she is doing well enough with him but worries what will happen to her when he is too old to care for her. She is on a waiting list for a waiver.
Another participant was a mother who is also a behavioral service provider. When her son came out of high school, she was fortunate enough to have him go into her program.
“I was hoping he would be able to move into an apartment but they reduced the daily rate for apartment living to a level that was not financially viable to staff. So now they are taking people out of their own homes and putting them back into group homes.”
A parent reported that her son has a micro board that is supported by the state of Georgia. Micro boards apply to become licensed service providers for one person.
Getting the right services is often a long, bumpy road. Advocates and parents banded together and went straight to the people who held the purse strings. They invited local legislators and senators into their homes.
“So [my son] moved to Athens and lives independently with supports in his own home. He has not been hospitalized again in nine years and he has a job. When he was in the institution, they said, ‘he won’t make it.’”
Topic 2. The People Factor
Direct-care workforce—availability and training
“There is a critical need for a direct-care workforce.”
“How can we make sure the person with the most extreme needs [is] addressed in a thoughtful, competent way?”
“Those are the individuals that people make the argument about that the institution has to exist. Presumptively we think those people’s needs are being met in this congregate setting…they are not.”
A number of years ago a state program spent millions of dollars training state workers. When people were transferred to community-based services, advocates wanted the training dollars to be spent on community workers. But the state would not pay for the training because the workers were not state workers.
The Developmental Disability Council created a values-based curriculum that is used in 13 colleges around the state. The course is co-taught by a person with a disability. When the funding is exhausted, the council will not be able to keep it going.
Providers say they need additional help. The Division of Developmental Disabilities is expanding its in-house training program and quality improvement process to provide technical assistance. The division has been collecting data and is trying to use it for continuous quality improvement and to develop new processes. It used to be “You’re doing badly—you figure out how to fix it.” Now the division is putting processes into place to bring providers up to at least a minimum standard. But the infrastructure is not there. The division is considering bringing in some national providers to increase capacity. Access to services is a problem throughout the state, but particularly in rural areas.
Georgia conducted a large rate study which concluded that providers are paid too much. If this analysis is acted upon, many providers might close their doors. Currently, everyone gets the same rate regardless of their needs, but that is changing.
“We wanted to show how much it costs us and it backfired. The people that work for me get paid about minimum wage even after 25 years. They have to work two jobs to survive.”
“Some folks simply have no family to count on.”
“Most of the people I serve don’t have family or the family rights have been terminated.”
Topic 3. Vision and Values
Some people in Georgia believe that closure will happen and are trying to figure out how to serve former institution residents in the community. Most focus group participants agreed that there is momentum, but they are struggling to make sure people will be landing safely.
Georgia has one example of what the transition to the community looks like when it is done really well: Georgia Options. Other providers offer residences but not necessarily homes. Georgia Options has strong leadership and serves one person at a time. It employs micro boards and practices transparency regarding abuse and neglect.
“They know what home is. It is a sanctuary, it’s your own space, and you get to say who comes through the front door. The individual is afforded a lot of autonomy and dignity and respect that is elevated to a cultural norm. Unfortunately that is not the norm.”
Topic 4. Strategies and Programs
There was consensus in the group that you practically have to get the entire legislature into your house to convince them of the need for changes in the system.
“The system is dysfunctional.”
Parents and guardians have valid concerns. Many of them need to see how well community living can work before they agree to move their family member out of an institution.
“The problem is that people can’t see how it will work.…The Children’s Freedom Coalition and the Georgia Developmental Disability Council sponsor tours that help families see how this could work for their loved ones.”
The state has begun offering tours to highlight living options and services available in the community. They have been very successful. One of the mothers participating in the focus group had taken a tour and subsequently agreed to bring her son home from an institution in Alabama.
“The parents’ concerns were: I want to know that my child is safe, having a good life and that there is some possibility that people who serve him can make a significant commitment to him so it is not just shifts of strangers rotating through.”
In an institution, up to 40 percent of residents have dual diagnoses. People seem focused on the behavioral issues. The community programs are not prepared to serve people with dual diagnoses, because the behavioral issues often overshadow the mental health issues.
“You can’t just throw meds at them.”
Professional and dental services are provided at the institution, but Georgia is down at the bottom in dental care. They are trying to push advocates to take this issue to the legislature. Every year there is a battle in the legislature over dental services funded by Medicaid—it is the first thing they cut. Right now, they are just trying to keep it as a covered service.
“I have a waiver and I live on my own. I have had trouble getting dental care. Nobody takes Medicaid. They will not do a root canal.”
Topic 5. Quality Assurance
One of the things that helps states succeed is to develop a “healthy obsession with quality.” The state needs to be clear about what it is and is not willing to fund.
Georgia has started doing needs assessment, mapping out where people are living and how many are more than 10, 20, or 50 miles from the nearest provider. The state is beginning to understand where it needs to develop services.
Topic 6. Successful Transitions and Safeguards
The people who are coming out now have the most needs.
When transitions into the community are not going well—especially as a result of behavioral issues—the transition team meets with the provider, hospital staff psychiatrist, case expediters, regional staff, and state staff. This root cause analysis is conducted for any unsuccessful transition.
“When we have an unsuccessful transition, we are doing a root cause analysis to figure out what went wrong. Unfortunately, we have found that when we bring everyone to the table, people are not being forthcoming as to what needs to be said.”
The role of the parent in the root cause analysis is still evolving. Unless people who truly care about the person are involved, long-term resolution is not possible.
“When I am sitting with providers, I hear that the families ‘don’t get it.’ That really gets my blood pressure up. Don’t tell me I don’t get it. I’ve raised my kid…I understand and I’ve been at IEPs, I’ve been to PTs. I’ve been there for the long haul.”
Topic 7. Litigation
It took years and Federal Government intervention to turn things around in Georgia. At the same time expectations were rising, the DOJ settlement forced the state to move. But the settlement will not be successful and progress will be slow unless the system can address individual problems and concerns, which are not hard to identify.
“We are all looking for systemic change but there is no way to solve individual problems. It takes three weeks to get to the right person to talk to.”