Georgia was selected because it had recently signed a statewide Settlement Agreement with the United States Department of Justice (DOJ) providing 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 Georgia Advocacy Office (the Georgia 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 upon 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, which urged the State of Georgia to develop a plan to serve all children in community-based settings focusing on family reunification. The coalition did not stress budget savings because it stated, “it may not be cheaper to serve people in the community.” The coalition argued for the human and civil rights to live in the community and worked on building a consensus around these concepts. For example, the coalition held a summit of more than 100 participants during the first year (2005) to raise awareness, discuss alternatives, and build political will. The coalition worked closely with parents reluctant to move their children to community-based settings. It organized tours of community placements, which proved to be very successful in convincing parents of the possibility of community placement. Parents universally wanted to see that the people who were going to serve their children could make a significant commitment, rather than just shifts of strangers rotating through.
The initiative has been successful in closing the state hospital beds for children. There were about 45 children in state hospital beds when the initiative began. About five or six children are left due to parental concerns. The coalition documented all the stories of the children who came out of the institutions in a video. The coalition reported that challenges remaining include capacity in rural areas and parental rights issues for children still in the institutions.
The state has stopped admissions to the 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 a 90-minute time frame. Because of the DOJ settlement, individuals 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, conducting informal presentations to groups of legislators around the state. It has been educating legislators about the DOJ settlement. A tour for legislators is being planned. The biggest challenge the coalition sees for the future is ensuring that there will be appropriate community capacity.
Everyone interviewed during the site visit in Georgia stated 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 DOJ 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. Some legislators fought closure for economic reasons. Now those legislators have been neutralized.
The parents and guardians who attended the focus group expressed their strong support for their children living in the community and out of institutions, though each (self) advocate deals with the system in a different way. They faced enormous challenges, and it took a lot of finagling to get it right. Georgia has some exemplary providers, and they are under pressure to expand. They recognize the need to find ways for them to help others create similar programs. However, they see rates paid to providers and program infrastructure as huge hurdles to expanding quality services.
The State of Georgia has increased the monitoring, quality improvement, and control of community-based placements. The state officials 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, it 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 the Quality Improvement Regional Councils staffed by the Delmarva Foundation, under contract with the State of Georgia. Additionally, providers who have already participated in a Quality Enhancement Provider Review can ask Delmarva to come and 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 adequate capacity and infrastructure is not available at this time, so the state is exploring bringing in national providers in order to increase capacity. Access to services is a problem, particularly in rural areas, but statewide as well. The state has been conducting a needs assessment—mapping out where individuals 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 to high gear with a rapid rollout. Challenges include ensuring a uniform standard of quality of services throughout the state and making certain that there is adequate capacity to serve people where they want to live.
Time and Place
On May 24, 2011, a focus group was organized with the help of the Georgia Developmental Disabilities Council in Atlanta, Georgia. This group, convened at The Shepherd Center for Rehabilitation in Atlanta, brought together the key players in the effort to close institutions for individuals with ID/DD in Georgia. Below is a summary of this session identifying the participants and using the voices of participants to tell Georgia’s story.
This focus group was made up primarily of (self) advocates with some professionals included.
- 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 and parents and guardians who attended the focus group expressed their strong support for individuals with ID/DD living in the community and out of institutions, though each (self) advocate deals with the system in a different way. They faced enormous challenges, and it took a lot of persistence to get it right. There are some exemplary providers, and they are under pressure to expand. The participants recognize the need to find ways for them to help others create similar programs. They see rates paid to providers and program infrastructure as huge hurdles.
“Many of us don’t live in institutions but lead institutional lives.”
One parent’s son is still residing in a nursing home in Alabama, where he was placed as a child. She is working with the State of Georgia to get her son back and into a community-based setting.
The Georgia Protection and Advocacy (P&A) agency was working with families and the State of Georgia to determine where people were located in nursing facilities. Their data are not complete and not every person was accounted for. There are Georgia children in Alabama.
One self-advocate’s sister is still in a group home, but she wants her to come home. She is blocked from moving because she is in a different program. Ultimately, the goal is to have the sisters to 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 she was not thriving. Her father now reports that she is doing well enough with him but worries about what will happen to her once he gets too old to care for her. She is on a waiting list for a waiver.
One focus group participant was a mother who is 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 at 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 with the purse strings. They invited local legislators and senators to 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 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 individuals were transferred to community-based services, the advocates wanted the training dollars to be spent on the community workers. But the state would no longer pay for the training because the workers were not state workers.
The Developmental Disability Council created a values-based curriculum. It is now in 13 colleges around the state. The course is co-taught by someone with a disability. As the funding concludes, the Council will not be able to keep it going.
Providers are saying they need additional help. The division of DD is expanding its in-house training program and quality improvement process to provide technical assistance to providers. It has been collecting data and now is trying to use the data for continuous quality improvement—new processes. It used to be “You’re doing badly; you figure out how to fix it.” Now, it is putting processes in place to bring providers up to at least a certain level. Currently, the infrastructure is not there. It is looking at bringing in some of the national providers in order to increase capacity. Access to services is a problem, particularly in rural areas, and statewide as well.
Georgia did a huge rate study that concluded that providers are getting paid too much. If the analysis is acted upon, it may close many providers. Everyone gets the same rate regardless of their needs. That is changing now.
“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
In Georgia, only some believe that it is no longer a matter of “if and when” closure will happen. They are trying to figure out how to serve people. Georgia still has a private Intermediate Care Facility. Most agreed, however, that there is momentum now, but they are struggling to make sure people are landing safely.
Georgia does have examples of what it looks like when it is done really well—Georgia Options. Why is Georgia Options head and shoulders above other providers? Other providers provide residences, not necessarily homes. Strong leadership. One person at a time. Micro boards. Transparency around 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 a consensus among the group that it was too tragic that you have to get the entire legislature to your house. Many are not going to be able to get the legislature to their homes.
“The system is dysfunctional.”
Parents have valid concerns. You need to show them how it is done well in Georgia in order for them to agree to let their family member go.
“The problem is that people can’t see how it will work.”…The Children’s Freedom Coalition and the Georgia Developmental Disability Council (GDDC) sponsor tours that help families ‘see’ how this could work for their loved ones.”
Georgia began tours to highlight community living options and services available in the community. This has proved very successful. One of the mothers participating in the focus group had participated in one of these tours and that is the reason she was able to make her mind up 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 the institution, up to 40 percent of residents have dual diagnoses. People seem focused on the behavioral issues. The community programs are not up to par for people with dual diagnoses. These folks have real mental health diagnoses. They have behavioral issues which overshadow the mental health issues.
“You can’t just throw meds at them.”
Professional and dental services are provided at the institution. Georgia is down at the bottom in dental care. State agency officials are trying to push advocates to bring 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 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.
Georgia has started doing needs assessment, mapping out where individuals are and how many are more than 10, 20, or 50 miles from the nearest provider. The state is beginning to know where it needs to build these services.
Topic 6: Successful Transitions and Safeguards
The people who are coming out now have the most needs.
When transitions to the community are not going well, the whole transition team meets with the provider, hospital staff psychiatrist, case expediters, regional staff, and state staff to take action if there are behavioral issues. They had a protocol in place that is used if anyone had to return to the hospital within 60 days. Now they do it 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 discussion is still evolving. Unless people who truly care about the person are involved, there cannot be long-term resolution.
“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, etc.”
Topic 7: Litigation
It took years and the Federal Government for things to turn around. At the same time, expectations were rising. It took the rising expectations and the DOJ settlement to get the state to move.
The DOJ settlement will not be successful unless the system can address individual problems. Until there is a way to respond to individual concerns, especially where the problems were so easily identified, progress is stymied.
“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.”