AT THE EDGE OF A CLIFF: A Workforce Crisis in Developmental Disabilities Services

Frustration. Sadness. Anger. Fear. Like they’re about to fall off a cliff.
 
These are some of the emotions that people who experience intellectual and developmental disabilities (I/DD) receiving supports are experiencing, due to the statewide direct support professional (DSP) workforce crisis. Simply put, there aren’t enough caregivers, and many of the good ones are fleeing for better paid positions.

 

Caregivers are frustrated and scared, too. Some are being shuffled from household to household, with no time to get to know their customers and their needs. Many caregivers are unable to pay their bills or afford healthcare without committing to two or three jobs.

This crisis inspired a UCP Oregon customer, John Griffiths, and UCP’s Executive Director, Ann Coffey, to launch a webpage called This Is Our Voice. (You can read more about the project here. But, in short, the website makes it easier for people to share their experiences with the workforce crisis.)
 
John is a long-time self-advocate. He’s been involved with Build A Movement; Self Advocates Taking Action; the Go! Project; the Developmental Disability Coalition; and Speak Up, Speak Out. He is also on various advisory panels and the boards of several I/DD advocacy groups.
 
John experiences developmental disabilities, and has been supported by several agencies over the years, including UCP Connections, UCP Oregon’s support services brokerage. He and his UCP Personal Agent work together to hire Direct Support Professionals / Personal Support Workers (DSP’s / PSW’s). John’s PSW’s support him to have a clean house, get out into the community, and manage his health and safety.
 
John adores one of his caregivers in particular. He describes her as “loving, compassionate, caring, sensitive, thoughtful, and patient.” She is committed to ensuring that he meets his major life goals, “even when it’s really hard.” He says, “she has helped me go beyond what my parents, my teachers, and even I thought I could do.”
 
She is a strong advocate. And she’s creative—she found and facilitated two internships for her customers, including one for John at an arts collaborative. She also helped John create an emotional support group.
 
Alas, this wonderful caregiver is having a hard time staying in the field. She needs health insurance, a retirement plan, better pay, and paid time off. John worries that she will leave her job or the field entirely.
 
Over the years, he estimates that he has had around 25 caregivers, one of whom only lasted two weeks before getting a better paying job elsewhere. He has also experienced case manager turnover.
 
John says he’s “tired of the turnover, and tired of losing people.” He is tired of having poorly trained or poorly skilled caregivers. And he’s tired of caregivers that are “demeaning” or unable to adapt to his requests.
 
John also experiences unfilled staffing hours on a monthly basis. In other words, John’s health and safety needs have been assessed, and he’s eligible for a certain number of caregiver hours, but he can’t fill all of those hours due to the caregiver shortage. And, when John’s supports are disrupted, life gets hard. He doesn’t get out of the house. He doesn’t socialize. He finds himself getting sick and anxious.
 
John isn’t the only one facing these issues. He says that a local intellectual and developmental disabilities Facebook group is filled with constant pleas for staffing coverage, from families and customers, and constant job posts from provider agencies. He says the staffing crisis is the biggest issue being discussed at all tables within the I/DD community.
 
John has made complaints through official channels, but he feels like “the system is obviously not set up to protect us.” He feels as though the state will take ten years to come up with a solution. But ten years is too long. “We’re at the ledge,” he says. “It’s just a matter of time until people start falling off.”
 
That’s why he went to UCP Oregon’s Executive Director, Ann Coffey. He hoped she could get him in front of a news crew, so he could share his story. Instead, John and Ann ended up creating a webpage where everyone (customers, families, caregivers, and case managers) can share their experiences of the workforce crisis.
 
John and Ann share the belief that quality caregivers deserve a living wage, including ongoing inflationary adjustments and benefits (healthcare, retirement plans, paid time off, and reimbursement for business expenses). They also believe that adequate training and supervision are necessary to support an effective workforce, especially one that is supporting such intimate and delicate matters.
 
As Ann says, “Entities that employ caregivers, including individuals with I/DD, cannot pay a wage that is competitive. We are losing our best and brightest to Starbucks, McDonalds, and other entry level retail and service jobs.”
 
Like John, are you at the edge of the caregiver crisis? Do you have something to say? Share your story here.
 
If you would like more information about this topic, please contact Ann Coffey, Executive Director of UCP Oregon at 971-235-9543 or via email.