Identifying Previous Service Experience and Needs Among Individuals with Autism Waiting for Services

Background: Pennsylvania is home to two of the first programs for adults with autism in US, the Adult Autism Waiver and the Adult Community Autism Program, both administered by the Pennsylvania Bureau of Autism Services. In 2015, 1,648 individuals were waiting for services through these two programs. Understanding the service experiences and needs of individuals with autism waiting for services and their caregivers provides critical insight to help states plan for the services (and associated cost) individuals will need. Individuals waiting for services are also at risk of adverse outcomes such as hospitalization and police contact since they are less likely to be receiving behavioral supports that would help prevent these crises. To understand the needs of this group, the Pennsylvania Autism Needs Assessment was distributed to individuals with autism waiting for services and their caregivers.

Objectives: Demographic characteristics, service experiences, and service needs of individuals with autism waiting for services and their caregivers will be reported and compared to Autism Needs Assessment results from the rest of Pennsylvania who are not waiting for services.

Methods: The Pennsylvania Autism Needs Assessment was distributed to all individuals waiting for services for the Pennsylvania Bureau of Autism Services programs over the age of 18 and their caregivers in 2015. Individuals and their caregivers could complete the Needs Assessment in paper copy or online. Paper copies were double data entered and data were analyzed using crosstabs for descriptive comparisons in SAS. Ongoing analyses to compare individuals waiting for services to those receiving services are underway.

Results: A total of 638 responses were gathered from individuals waiting for services and their caregivers. Most (410) responses were from caregivers and 228 individuals with autism over the age of 18 responded to the Needs Assessment for themselves. The majority of respondents (84%) were white. Most individuals indicated needing more support in social skills training (46%), supported employment (39%), and support groups (38%). One in five caregivers indicated a need for respite care. Additional analyses, including comparisons to responses to the Needs Assessment from statewide individuals not waiting for services are underway.

Conclusions: Limited available resources across states in the US for the foreseeable future indicate individuals with autism may wait for services especially during the transition into adulthood. Identifying the needs of this group helps to characterize the individuals who need services the most and provides valuable information to help states plan for their services and budget. With one-third of respondents indicating needing employment support services, and 24% indicating five or more co-occurring diagnoses, these results provide priorities for the services that can support individuals in obtaining and maintaining employment and seeking mental health support services. The low response rate from minority populations (< 20%) warrants a top priority for continued research, and more effort is needed to catalogue the needs of underserved and underrepresented populations.