The Arc is pleased to share the National Autism Indicators Report: Family Perspectives on Services and Supports. The Arc’s Maura Sullivan contributed to this report as a member of the Advisory Panel. The report, from Drexel Autism Institute, details information regarding families of autistic adults who use Developmental Disability services and the gaps they face in services and supports, lack of emergency planning and barriers to community participation.
In the latest National Autism Indicators Report: Family Perspectives on Services and Supports, researchers from Drexel University’s A.J. Drexel Autism Institute examined surveys of family members of autistic adults who use Developmental Disability services, and found needs for additional supports like respite care and assistance to plan for crisis and emergencies, especially among families whose adult lived with them.
Data from the surveys showed over one quarter of families with autistic adults who use Developmental Disability services and live with family do not have enough services or supports for themselves, according to the report. And over half of these families indicated a need for respite care to enable them to take a break from caregiving.
4 in 10 families had not discussed preparation for handing crises or emergencies within the previous year at a care team meeting, whether the autistic adult lived with family or apart from family in a group home or other setting. Researchers noted this may have left families ill-equipped to handle illness and unforeseen changes in caregiving needs during the COVID-19 pandemic.
“During the pandemic, families of autistic adults faced complications related to loss of direct support providers, loss of structure provided by daytime activities and a need for extreme precautions due to increased risk of serious illness in this population,” said Lindsay Shea, DrPH, leader of the Life Course Outcomes Research Program and director of the Policy and Analytics Center at the Autism Institute. “The pandemic highlighted just how dangerous lack of emergency preparation can be for families of autistic adults. Who will care for your loved one if you become sick and require hospitalization?”
Lead author Anne Roux, a research scientist at the Autism Institute, and her team looked at data from several thousand families across states that participated in the Adult Family Survey and the Family/Guardian Survey conducted in 2018-2019 as part of the National Core Indicators – a collaborative effort to collect data to help improve the quality of states’ Developmental Disability services.