Blog

States' developmental disability services lacking for adults with autism

n the latest National Autism Indicators Report, 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.
In the latest National Autism Indicators Report, 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  who use Developmental Disability services and live with  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.

Four 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.

Gaps in Resources

This is the first National Autism Indicators Report to examine the needs of families whose loved ones use Developmental Disability services, as little data is available that specifically explores the needs of caregivers. Past reports have shown that households of youth on the  were more likely to experience financial hardship. While this latest report on families found that only 37% of families with an adult living with them received payment for the care they provided, despite the fact that they may be less able to work due to need for supervision and additional caregiving demands.  Read more.

Contributors

Contributors