Quality Indicators / Problems / Data Drivers
QI 4.1: Families have access to comprehensive, flexible, and family-centered supports, such as support groups, parent training and education, respite, and after-school care.
Problem: Parents often do not know where to go for services after their child first receives a diagnosis of autism. The needs assessment survey results suggest families then seek both informal support from networking groups with other families (parent and sibling groups), and formal support from specialized after-school care, respite, and parent training and education opportunities. Additionally, there are a limited number of support groups for siblings of children with autism in Georgia.
Data Driver: amilies whose children exhibit poor adaptive behaviors or challenging behaviors often experience high stress levels and quality of life restrictions, and require higher levels of support to optimize outcomes for their children.17
QI 4.2: Supports reflect family culture, needs, values, and preferences.￼￼
Problem: When available, family supports are not always culturally competent. Supports are often lacking in rural areas. When services do exist, families often can’t afford them, even when they have insurance or a Medicaid waiver.
Data Driver: Families with a child with autism have high needs for services and the availability of services, but cannot access them due to long wait lists, distance, or cost. 18
QI 4.3: Family supports assist the family in accessing both formal and informal supports in the broader community.
Problem: In Georgia, family supports generally emphasize provider capacity and formal structures, over family-identified concerns and informal supports.
Data Driver: Families receiving informal support from their social networks and formal support from agencies and health care providers are more likely to show positive adjustment.19