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National Autism Indicators Report: Family Perspectives on Services and Supports

Lindsay Shea

Author(s)
Anne Roux, Jessica Rast, Tamara Garfield, Paul Shattuck, Lindsay Shea

Date
5/25/2021

Topics
Access to Services, Community and Social Participation, Health and Mental Health

Type
Indepth Report

Data Source
National Core Indicators Adult Family Survey and Family Guardian Survey

Key Findings

Families need more supports and services – especially respite care to allow them to recharge and meet their own needs. They need understandable information about services and adequate planning for emergencies and for the future care of the autistic adult. Families whose loved one lives with them may need financial support. And families whose loved one does not live with them need choices regarding staff when care is inadequate - to avoid abuse and neglect.

Overview

The families of youth and adults on the autism spectrum provide vital supports across the lifespan. This report explores what family members report about autistic adults: the settings they live in, their access to services, opportunities to participate in their communities, and the choices they have about their services and supports. We also look at the characteristics of family members themselves, how they participate in decision-making and choices about services and providers, and the types of supports they may need themselves to identify and coordinate quality care and to best meet the needs of the autistic adult.

Suggested Citation

Roux, Anne M., Rast, Jessica E., Garfield, T., Shattuck, P., and Shea, Lindsay L. National Autism Indicators Report: Family Perspectives on Services and Supports. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, May 2021.

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