In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. One is a shortage of caregivers and direct support professionals, which is likely to get worse.
The Family and Individual Needs for Disability Supports (FINDS) survey:
- 68% of family caregivers reported that the direct support workforce crisis had negatively affected the supports that their family members received.
- 81% of family caregivers provided more supports due to decreased available supports and services.
- 35% reported that their family member is on a waiting list for government-funded supports and services.
- 73% paid more out-of-pocket, and 37% report difficulty paying for supports and services.
- Participants reported that their family members are experiencing various negative effects from the decreased availability of supports, including access to therapies, having work hours cut, losing their job, or having schools/daycares cut hours or close.
- Family caregivers reported that the negative effects related to their caregiving duties have increased since the 2017 FINDS Survey.
- The number of caregivers who reported feeling very or extremely stressed has increased from 48% in 2017 to 54% in 2023.
- Nine in ten caregivers reported some impact on their employment related to their caregiving responsibilities.
- 41% reported leaving employment to provide supports to their family member.
- Half of all participants (50%) agreed or strongly agreed that they were under financial strain due to providing supports.
Most people receiving supports were between the ages of 22 and 64 (59%), 39% were aged 21 and under, and 2% were 65 and older. Six in ten (59%) were reported to have an intellectual disability, 50% were reported to have autism spectrum disorder (ASD), 40% had a communication delay or speech disorder, 36% had any developmental delay, and 36% had a mental or behavioral health diagnosis. Fewer than a third were reported to have a variety of developmental disabilities
