The Children’s Freedom Initiative – Paving a Path Home Then and Now
The following article is a feature article on the Children's Freedom Initiative from the Fall 2013 Making a Difference magazine. Click here to read the entire magazine.
The Children's Freedom Initiative – Paving a Path Home Then and Now
By Becca Bauer
"Helping a child move out of an institution or facility where they are isolated from their family, friends and community is one of the most rewarding feelings," said Leyna Palmer, a former advocate at the Georgia Advocacy Office (GAO). "When you see it happen, you see that this is the right option and that no child should be denied the opportunity to grow up in their community."
That is why Palmer spent time at the GAO advocating for the Children's Freedom Initiative (CFI), a collaborative effort to ensure that children who live in facilities and institutions are given the chance to live with permanent, loving families in the community setting.
Led by a coalition of advocates including the Georgia Council on Developmental Disabilities (GCDD), the Institute on Human Development and Disability at the University of Georgia (IHDD), the Georgia Advocacy Office (GAO), the Center for Leadership in Disability at Georgia State University (CLD), the Statewide Independent Living Council (SILC) and People First of Georgia, the ultimate goal of CFI is to create a Georgia in which all children are brought up in loving homes and no child lives in an institution.
"Children living in institutions miss out on many of the opportunities of living in the community – going to school, birthday parties, belonging to teams and having the chance to participate as a full member of their community," said Eric Jacobson, executive director of GCDD. "No child should be denied those experiences."
Starting in the fall of 2004, with more than 100 Georgia children isolated in state-run institutions and nursing facilities, the Georgia Developmental Disabilities Network (DD Network) partners joined together to create the Children's Freedom Initiative and address transitioning children back into the community. After multiple meetings to designate CFI's purpose, they drafted House Resolution 633, which urged state departments to work together and develop a plan to get children out of institutions and facilities.
The House Resolution was passed by the General Assembly in March 2005 and declared that state departments work together to identify, assess and provide appropriate home and community-based supports to children under the age of 22 who were currently living in state-run facilities and implement a plan to transition them out within five years.
"This resolution created a CFI Oversight Committee, made up of GCDD, GAO and IHDD, state agencies responsible for
transitioning and supporting children who come out of institutions, individuals with disabilities and family members, to design a plan and help oversee its implementation," Jacobson said.
In 2005, the CFI kicked off the initiative with a summit, "The Children's Freedom Initiative: A Summit for Change," to bring together parents, advocates and policymakers from across Georgia to learn how other states had created support systems for children with disabilities, share insight on what works when transitioning children out of facilities and coordinate a united effort to ensure that children in Georgia no longer grew up in institutions.
Over the next few years, the CFI efforts continued moving forward and transitioning children living in state-run institutions and facilities into community settings, but they also began working with Georgia families whose children were in facilities outside of the State to help them bring their loved ones back home.
Part of CFI's work also includes helping parents understand the options available and connecting them with resources and agencies that can help them with their transition process. In May 2010, GCDD and GAO coordinated a study tour to educate families of children with disabilities on how they could live in the community with appropriate supports. The participants were also given the opportunity to visit the homes of three individuals who had successfully moved out of facilities and back into homes to see how others with disabilities lived in different living arrangements. They got a firsthand look at how children and young adults with disabilities can receive support and care while living in a group home, in the home of a biological parent and in a host home.
"It's very difficult for people who are living in facilities and their families to know how to begin the process getting out of a facility, or in some cases, even to know it's a possibility," said Katie Chandler, a program director at the GAO. "So that's where the advocacy groups supporting CFI come in. We help families understand their options and navigate the system to get their children out of an institution with the supports they need."
As the House Resolution plan ended in 2010, there was no question as to whether the Children's Freedom Initiative was successful. "We have been successful in helping about 50 young people transition out of state-run facilities and have been keeping many more from ever being admitted," said Chandler.
Nevertheless, there is still work to be done. Chandler estimates that there are still hundreds more children in Georgia living in skilled nursing facilities and private institutions.
The CFI continues to advocate for transitioning children out of these facilities and educating families about the resources available, so that young people can remain at home or in the community, even when their home of origin is no longer an option.
As a way to continue advocacy and gain support for policy changes that eliminate barriers for children to live at home in the community, GCDD created the Children's Freedom Initiative Declaration in 2011.
"We believe all Georgia children should be free from institutionalization, and we want to use the Declaration as a tool to show our policymakers that their constituents demand the right to live in the community and thrive with appropriate supports and encouragement," said Jacobson.
Though there is still a long way to go before all Georgia children are transitioned out of segregated institutions and facilities, CFI will continue to safeguard the right that all children should grow up in their communities.
"No child needs to grow up in an isolated institution setting," declared Chandler. "CFI will continue advocating for the end of institutionalization for young people with disabilities until we have a Georgia where no child will live in an institution. Until that happens, we will keep working."
Sidebar:
Coming soon in the GCDD website video library: The CFI sponsored documentary, "Not Home," tells the story of several children who returned to the community to live in real homes after spending time residing in nursing homes.
And, continue reading for two personal stories on young people who transitioned back into the community from facilities with the help of CFI.
Navigating the Path Back Home
Sean Person loved to be outside, play basketball, skateboard and hang out with friends. But after a life-altering incident about two years ago, Sean's world was turned upside down. While playing basketball, Sean was shot in the spine and was paralyzed from the neck down.
After months of being hospitalized at the Shepherd Center, he moved back home with his mom Stacia Jones. Unfortunately, not long after, they were forced to move due to a housing situation that was out of their hands. Stacia had no option but to put Sean in a facility until she found a new place.
Based on recommendations, Sean went to live at Heritage Healthcare, but it was an hour ride for his mom, friends and family and it made frequent visits difficult. Sean's move was sudden and took away everything he was familiar with, but he reflects on his time at Heritage with a positive outlook. "I took it as an opportunity to meet new people, have new experiences and practice my motor skills," he says. "But after awhile, it was hard not being close to my friends and family."
One of the new people Sean met at Heritage was Leyna Palmer, a disability advocate from the Georgia Advocacy Office (GAO), who worked helping children living in facilities and institutions move out and find loving, permanent homes in the community. Palmer and Sean quickly became friends, and she started working with both Sean and his mom to get him back home.
"Sean and his family already knew that there were more options out there other than facilities," Palmer remembers. "There was no doubt whether it was possible for him to live at home – he already did that. What they really needed help with was navigating the system."
Though Jones was very active in the process, Palmer was able to help her understand the process, monitor the progress and move everything forward as quickly as possible.
"I had some knowledge of the process, but it's not helpful when you don't have the right connections," Stacia said. "Leyna helped me talk to the right people and guided me on what I needed to do. She was great, and was always there when I needed help." It took eight months of navigating the system, but Jones was able to find a new house and bring Sean home. "As a mother, it was a weight off my shoulders having him back," she says.
Sean was also excited to come home. On his first night back they had a movie marathon night and ordered his favorite food, pizza. "At home, I am able to interact more with my friends and family," Sean says. "I have more control and freedom over the things I do."
Now, Sean spends time with friends, sketches, writes and plans on finishing school and getting his GED.
"Sometimes it gets overwhelming," Jones says. "But we have an open communication and we work together to make sure he gets to achieve all of the things he wantsto do."
Finding Your Way to Freedom
Like most kids leaving high school, June Askew was ready to move out of her parent's house and explore her independence. Unfortunately, moving out did not give her the freedom she was hoping for.
June, now 24-years-old, was diagnosed with spastic quadriplegia cerebral palsy as a result of a premature birth injury and requires around-the-clock care and supports. When she was ready to be out on her own, her parents Kim and Jerry Askew were worried, but also wanted to give her the opportunity to experience what she wanted. The only option they knew about was moving June to a nursing facility.
June moved into the Warner Robins Rehabilitation Center when she was 20-yearsold. At first this seemed like a great solution, but eventually June got tired of being stuck in one room and not having control over anything in her life.
That's when Leyna Palmer, a disability advocate from the Georgia Advocacy Office (GAO), learned about June's living situation. Part of GAO's mission is to end institutionalization and they have a special focus on the Children's Freedom Initiative and helping children move out of facilities and institutions into the community.
"The first time I met June, it was clear she did not want to be in the nursing facility anymore," Palmer remembers. "She kept saying, 'I made a bad choice.'"
After their discussions, Palmer contacted June's parents about her moving into a group home.
"We were very resistant at first," her mother says. "Our hearts were in the right place, but we were terrified of her going into a group home because we'd heard horror stories and worried about her care. Luckily Leyna was persistent."
Palmer was instrumental in helping June's parents understand it was possible for her to live in the community with the supports and arrangements she needed.
"First I wanted to help June find her voice to say to her parents, 'I don't want to be here. I want to have more control over my life and be in the community,'" says Palmer.
Next, Palmer brought in a provider agency to meet with June's parents and let them address all of their questions and concerns. "That was the tipping point," Palmer remembers. "It gave them one-on-one contact and allowed them to have concrete examples of what June's day would look like."
Right before June turned 23, she moved into her new home, which is close to her parents so her family can easily visit, where she has two roommates. As for June, "I was very excited to move into my new home," she says. "I like to have people to hang out with and talk to."
"We love her living there now," adds her mother. "The freedom has helped her learn to make good decisions and it is great to see her joy in having her own house, room and space. She loves being with her roommates. They are like three peas in a pod. She is happy and we are happy and assured she is safe and cared for."
