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Wednesday, January 3, 2024

The State of Direct Support

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.  

From ANCOR'S 4th annual State of America’s Direct Support Workforce Crisis survey:

This year’s survey garnered responses from 581 distinct organizations delivering services in 45 states and the District of Columbia. The following are among the key findings from the State of America’s Direct Support Workforce Crisis 2023: 

  • 95% of respondents indicated they had experienced moderate or severe staffing shortages in the past year. 
  • More than half (54%) of respondents indicated they deliver services in an area where few or no other providers deliver similar services. 
  • More than three-fourths (77%) of respondents reported turning away new referrals in the past year due to ongoing staffing shortages. 
  • 72% of respondents reported that they had experienced difficulties adhering to established quality standards due to ongoing staffing challenges. 
  • Of those respondents that reported offering case management services, fully three-fourths indicated they had experienced difficulties connecting people with services due to a lack of available providers.
The report also notes: "Providers want to pay more, but lack the funding needed to do so, leaving the median direct support professional with an hourly wage around $14.50. In turn, providers at the national level are left to grapple with turnover rates hovering around 44% and vacancy rates in excess of 20%. "

The high turnover in the lower-paid and high-stress disability support profession results in fleeting connections, leading to a lack of continuity needed to form lasting relationships for people with autism. Even the most wonderful of support staff will last a few years at best, before they completely disappear from life.

I’ve seen this personally: As someone who has autism, I’ve experienced a revolving door of over a 100 support staff—and I plan on living for many more years. The reality is that any person with autism is a client, a case, a job to the people they tend to interact with most—and that’s not the same as family or friends. A higher staff turnover is especially ubiquitous for autistics who are considered “challenging cases,” as staff naturally look to move to a higher paying job or an “easier case,” as soon as they can. Consequently, as autistics age, their world can become increasingly lonely, leaving them even more vulnerable on multiple fronts.