A letter written to the Commissioner of the Administration on Developmental Disabilities, Department of Health and Human Services, which is seeking public input on “Envisioning the Future.”
February 23, 2011
Commissioner Sharon Lewis
Administration on Developmental Disabilities
Administration for Children and Families
U.S. Department of Health and Human Services
Mail Stop: HHH 405-D
370 L’Enfant Promenade, S.W.
Washington, D.C. 20447
Re: Envisioning the Future
Dear Commissioner Lewis:
We applaud the ADD for your Envision 2010 campaign and are pleased to offer a voice for children with disabilities as part of that campaign. We are the Children’s Freedom Initiative (CFI) and represent four federally-funded agencies that make up the DD Network in Georgia. The vision of the CFI is to create a world where all children live at home with loving families. The CFI’s mission statement challenges us to “Imagine a future in which no child will live in an institution.” We hope this is ADD’s focus for the future as well.
Children are our future, and all children deserve to have a home with a family and to be part of a community. All children deserve the opportunity to learn, grow, and explore. They deserve the opportunity to go to school and learn from interactions with teachers, students, and friends.
Unfortunately, many children with disabilities are not afforded these opportunities. Instead, they are segregated in facilities. This is not only unnecessary but detrimental to a child’s development. It is difficult, if not impossible, for children to develop to their fullest potential when living in an institution or nursing facility. It is unlikely that they go to school, and if they do, they are not able to participate in or enjoy opportunities other children have.
Children in institutions are isolated, not allowed to develop friendships, go to school, or participate in society. As you know, typical childhood activities such as birthday parties, sleep-overs, school dances, or club meetings are difficult and rarely happen. In addition, they do not develop a sense of belonging. There is a better way. We can provide the necessary supports to children in their homes and in the communities where they live.
Experts and advocates agree that individuals with developmental disabilities can and should live in their communities with proper supports. Unfortunately, there are still many barriers to this solution in Georgia and nationwide.
We created the CFI because we are convinced that
- Children need to live at home and be part of a community, and
- Once all children are supported in the community from childhood into adulthood, we can support all individuals with disabilities in the community.
The CFI is a collaborative effort of Georgia’s DD Network including two UCEDDs, the P&A, and the DD Council. We work together to bring children out of facilities into loving homes with appropriate supports. We encourage other states to follow the model of bringing together their DD networks as coalitions to work toward the goal of ensuring all children live in a family home.
The CFI kicked off in 2005 with a summit in Atlanta with Nancy Rosenau, Ph.D. from EveryChild, Inc. as the keynote speaker. Dr. Rosenau described ways to create permanent, loving homes for young people who live in facilities to summit participants, including family members, physicians, politicians, government stake holders, and advocates. Since the summit we have worked with the Georgia Department of Behavioral Health and Developmental Disabilities to help 40 young people move out of state-run institutions. We also work with young people living in geriatric nursing facilities and many youth in out-of-state pediatric nursing facilities. The CFI is committed to bringing Georgia’s children home from out-of-state facilities and to helping young people in Georgia get out of facilities.
In order to do this, we work with state leadership to ensure appropriate funding that will support families to stay together and allow young people to receive supports at home. We need to show families and young people what is possible by introducing them to people who live successfully at home with supports.
We think it is critical that the ADD make bringing children home a priority. No child should grow up in a facility in America or anywhere. We know how to support families so that children grow up at home. Options include family and extended family support, co-parent models, providing host families, and utilizing other natural supports.
We envision a future where Medicaid resources are directed to children living in communities, not facilities. By not providing financial support to facilities, resources can go to support services to families in communities.
We encourage ADD to support DD networks in every state to develop a plan to ensure children with developmental disabilities get out of nursing facilities and institutions and live with families. If each state creates a working group or initiative using the collective strengths of its DD network, we can all work together to bring kids home. Networks can collaborate with each other when children and young adults live in out-of-state facilities to ensure each child can transition and receive appropriate supports in their homes and communities.
We look forward to working with ADD in implementing a strategic plan that includes a path for all children to live at home with appropriate supports and that no child with a developmental disability lives in a facility.
Center for Leadership in Disability, Georgia State University
Georgia Council on Developmental Disabilities
Georgia Advocacy Office
Institute on Human Development and Disability, University of Georgia