The Children’s Freedom Initiative is a collaborative of the Georgia Advocacy Office, Georgia Council on Developmental Disabilities, Institute on Human Development and Disability, Center for Leadership in Disability, Statewide Independent Living Council, and People First of Georgia.
What about children with behavioral problems or children in comas?
Many children with difficult behaviors are already living with their families in the community. In 1996, when Rivers Crossing, a small institution located in Athens, GA, closed, and 37 children and youth moved to homes across Georgia, difficult behaviors actually lessened in the community. National studies have verified this experience. For children with difficult behaviors, it is important to have behavioral supports in place in the community.
Children in comas are as entitled to the love and support of a family as any child and can be supported in a family home. There is nothing complex or particular to children in comas that suggest that they cannot be cared for in a home.
How can I help get young people out of nursing facilities?
ADD is the U.S. Government organization responsible for implementation of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the Developmental Disabilities Act, or the DD Act. ADD, its staff and programs, are part of the Administration for Children and Families, of the U.S. Department of Health and Human Services.
- State Councils on Developmental Disabilities (SCDD)
- Protection and Advocacy Agencies (P&A)
- University Centers for Excellence in Developmental Disabilities
- Projects of National Significance (PNS)
What supports are available to children with disabilities in the state of Georgia?
Supports are available through Medicaid, so a child with a disability needs to qualify for Medicaid to be eligible. EPSDT is part of the Federal Medicaid Act that defines Georgia’s responsibility for all Medicaid eligible children. Families should first look to their pediatricians and child specialty professionals to request the orders for what their children need under EPSDT.
Other Medicaid waivers include, SOURCE (Service Options Using Resources in a Community Environment) that provides long-term health services in a person's home or community. It uses a comprehensive managed care model to improve the health outcomes of persons with chronic conditions . SOURCE is a case management model that provides the framework to manage care across all lines of services, diagnosis, or disability.
CCSP (Community Care Services Program) is another Medicaid waiver program developed to provide home and community-based services to people who have functional limitations or disabilities. The program helps recipients remain in their own homes, the homes of caregivers, or in other community settings as long as possible.
Children with multi-system diagnoses, who are considered medically fragile, can obtain some skilled nursing under the Georgia Pediatric Program (GAPP). The only access to nursing in GAPP is through nursing agencies. If a child is being discharged from a hospital, a discharge planner will contact a nursing agency to begin the process of eligibility for nursing. Specialized medical day care and transportation to and from that service are also available under GAPP.
How does a child qualify for Medicaid?
Children qualify for Medicaid through the foster care system, by having a low family income, or through Katie Beckett. Katie Beckett, or the Deeming Waiver, is a way for a child to receive Medicaid when family income is too high to qualify for SSI.
What about institutions?
Georgia Medicaid pays for children to live in geriatric nursing facilities, Georgia State Hospitals, and the private institution for people with intellectual disabilities in Valdosta, GA. Children living in an institution or nursing facility miss all the opportunities of living in the community, such as going to school, birthday parties, belonging to a neighborhood and a faith community. A child living in an institution does not have the personal relationships that children in families have with family members, friends, and neighbors. The CFI believes that all children can be supported to live outside of facilities and institutions, and can benefit greatly from having the opportunities that family and home bring.
What about the money? Isn’t it cheaper for people to live in institutions?
Medicaid currently pays for children and youth to live in institutions and nursing homes and can instead put the money toward community supports through the state Medicaid plan (EPSDT for children under 22), and various Medicaid waivers (mentioned above). Studies show that it is less expensive for people to live in the community than in institutions. Even when the cost is neutral, the child’s quality of life is better in a family home environment.
Is medical support available in the community?
Yes. Nursing supports are available in the community. In the 2010 Legislative session, House Bill 1040 passed, which enables caregivers (personal assistants, certified nursing assistants, and direct support professionals) to deliver health maintenance activities (routine, stable care procedures that were formerly considered "nursing duties" such as trach and G-Tube care, insulin injections, etc). This service provision will enhance the training and skill levels of support staff and enable children to receive intimate care procedures from the person that is with them the most aside from their family members.
How many children live in facilities in Georgia?
This is difficult to answer because we do not have accurate data from the Department of Community Health, Georgia’s Medicaid agency. We know a few children still live in the state hospitals, with plans to move them in the next few years based on the settlement agreement in US vs GA . Currently, a child can be placed in a nursing facility without question if he meets medical need, even when supports are available to keep the child in the community. Therefore, the number of children in geriatric nursing facilities in Georgia keeps changing. In addition, we do not know how many young people from Georgia live in facilities out of state. There are approximately 20 youth living in two pediatric nursing facilities in a neighboring state, and we’re trying to locate the other facilities in other states to identify Georgia children there. When a child lives in a facility in another state, the child is usually a recipient of the other state’s Medicaid and we do not have means of tracking the data.
Don’t the children need to be in institutions?
The proper question to address is: What do children and youth need? Fundamentally, children and youth need families, friends, a home and a community, as well as the services and supports that allow them to grow up and thrive at home. More than 30 years of research clearly demonstrates that living in an institution is harmful to the cognitive and social development of children. Children do not need to grow up in segregated, congregated facilities. Children and youth with similar disabilities currently live in family homes and attend their neighborhood schools in Georgia, so it is possible for children to live outside of institutions. As of June 2004, 16 states had no children or youth in state institutions, including 9 states that no longer operated state institutions for any individuals with disabilities.
Aren’t there some people who can’t live in the community?
Most experts believe that everyone with a developmental disability can be supported in the community. The Healthy People 2010 report (Centers for Disease Control and Prevention, 2003) describes institutions and segregated residential settings as inconsistent with best practices in public health and calls for institutional placements for children to end by the close of the decade, if not sooner. A child can grow up in a family home with the proper supports. Many families in Georgia are successfully raising their children with disabilities at home. Not a single individual with a developmental disability has to be institutionalized.
Aren’t children safer in an institution?
No. Hospitals, institutions, and nursing facilities are not safe places for anyone, especially for a child with a disability. Medical outcomes are more positive when children live at home. Any type of care provided in a facility can be provided in a family home. In an institution, children are subject to injury and exposed to diseases. Studies show that abuse and maltreatment rates are lower when people live in the community than when they live in institutions and that accidents and incidents occur as frequently in institutions as in the community.
How do you get children out of facilities?
Moving children out of facilities requires a lot of organization and planning based on each child’s situation. The Department of Behavioral Health & Developmental Disability (DBHDD) has moved more than 30 young people out of state hospitals since CFI started in 2005. Children and youth require carefully planned supports to ensure a successful transition to a community setting.
Are there families who want or who will be able to take the children?
Yes. For many of the children, their families of origin want to bring their children home, but have struggled to receive the necessary supports and have had to relinquish their child’s care to institutions. For the children who cannot go home to their families, there are other families who would welcome them into their homes and provide them with support and love. The question is not whether these children are wanted in homes, but the availability of sufficient and appropriate supports.
What about youth aging out of custody from the Department of Family and Children Services (DFCS)?
One of the areas of concern is children with special needs who are aging out of foster care. Currently there is no strategic, consistent planning process for transitioning the children from the services provided in the DFCS system to the adult support system. A multi-agency group started meeting in 2010 to figure out a systematic process for transitioning foster children from one system of funding and supports to another, with the goal being that the day after their birthday and age ineligibility for DFCS doesn't look any different from the day before. We want to ensure that a child who turns 21 is not at immediate risk of placement in a nursing facility because adult services have not been established.
What supports are needed?
Needed supports vary depending on each individual child. While many things may be available through friends and neighbors, some things will need to be provided by professionals or purchased for the family.
What supports are available?
- Support coordination
- Personal support
- Assistance with daily living skills
- Specialized medical equipment and supplies
- Nursing and home health aides
- Occupational, physical and speech therapy
- Emergency response systems
- Home health services
- Respite care
- Private duty nursing
- Counseling services
- Vehicle adaptations
- Home modifications
- Supported employment
- Residential supports
- Home delivered meals
- Medical day care services
- Medical office visits
- Prescription drugs
- Hospital visits
- Comprehensive dental care
What if something bad happens to the children in the community?
The family would seek the necessary solutions. Bad things happen to children and youth, but when they live in loving homes in the community, the people who really care about them make the decisions and respond appropriately.