Labor shortages impacting care for patients with disabilities. Here's how some organizations are tackling the problem

Home care nurse giving patient physical therapy
Person-centered care for people with intellectual or developmental disabilities is critical, said Craig Escudé, M.D., president of IntellectAbility, which provides training and tools to those caring for individuals with these conditions. (Getty/Photodisc)

Amid the COVID-19 pandemic, the turnover rate among support staff for people living with intellectual or developmental disabilities (IDDs) has continued to climb

That’s despite people with IDDs being significantly more at risk of dying from coronavirus. In fact, intellectual disability was found to be the second-highest risk factor besides age for death from COVID-19. They are also nearly four times more likely to have high annual medical expenses. And pregnant people with IDDs have been shown to be at higher risk for comorbidities and adverse pregnancy outcomes

Experts say the labor shortage can be explained in part by the demanding yet low-paid work of being a direct support professional. It requires caring for a population with highly complicated needs which, to ensure the best care, require specialized training—training that’s not taught at medical schools. 

Tech-enabled training

Person-centered care for people with IDDs is critical, said Craig Escudé, M.D., president of IntellectAbility, which provides training and tools to those caring for individuals with IDDs. 

“People with IDD want the same thing that everybody else wants, and that’s to live life to the fullest,” Escudé told Fierce Healthcare.

The first step to person-centered care is acknowledging the person before the disability, he noted. The value of their lives “doesn’t mean it’s of lower quality just because it’s different.” 

Caring for people who have difficulty communicating is a complicated task. They often do so with behaviors, Escudé explained. But someone not properly trained in IDD treatment may interpret this behavior as indicative of an underlying mental health issue and may try to get it medicated by a psychiatrist. However, that may not be the right solution. 

Tools and resources exist to identify these behaviors and to better understand what underlying medical condition they might be expressive of. IntellectAbility’s tool relies on patterns that are added by a team of clinicians. “It helps direct the care and support of a person,” Escudé said. The company also offers a health risk screening tool, which it claims is the most widely used and validated instrument for people with IDDs.

This training is not covered in medical school, Escudé noted. In fact, clinical expertise in IDD is hard to come by. Yet education is key to resolving existing health disparities in this space and improving outcomes (along with screening, accurate diagnoses and preventive measures).

That’s why one of IntellectAbility’s e-courses is meant to be a comprehensive curriculum for clinicians on IDD healthcare fundamentals. The course is being implemented at the curriculum for all freshmen medical students at the William Carey University College of Osteopathic Medicine. It is also used by Georgia’s Department of Behavioral Health and Developmental Disabilities to train physicians statewide, as well as by the Cerebral Palsy Associations of New York State to train physicians across the state. 

Several practicing clinicians praised the course, saying they believe it should be mandatory for all providers, according to feedback shared with Fierce Healthcare.

Addressing staff retention

If before the pandemic, caregivers’ turnover rate was between 35% and 40%, that number has since climbed to more than 50%, Escudé said. While the pay is extremely low—in some states, home care aides make less than $11 an hour—the work is an enormous responsibility. In part, the shortage has also significantly worsened as wages have risen in other industries that previously paid a comparable wage, he said.

“People are losing services, they’re losing independence and integration into society,” Escudé said. 

Mike Alvaro, executive director of Cerebral Palsy Associations of New York State, echoed his concerns about the ongoing workforce shortage, calling it “extreme.” In particular, there is little access to specialists like dentists, OB-GYN providers and pediatricians for those with IDDs within their clinics, he said. “It’s a huge problem for us,” he acknowledged. It’s especially tricky because most patients with IDD are on Medicaid, and reimbursement for providers is low.

Alvaro thinks another contributor to turnover, at least in New York, is the highly regulated nature of the state. The pandemic may have shortened clinicians’ tolerance for extensive reporting requirements, he noted.

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There is hope that the Biden infrastructure bill will increase pay for these positions, Escudé said. Temporary funding influxes aren’t enough, he cautioned. They need to go hand-in-hand with the education of staff. He pointed out that studies show when staff are better educated, they are more likely to remain in their position. 

“Training definitely plays a role, but of course, you have to have people to train,” he said. “I would strongly encourage hospital systems to provide this training to their clinicians.”

Alvaro agreed, saying it’s about “looking to the next generation to try to make sure we’ve expanded their thinking and horizons about the IDD community. The quality of care improves once the complexity is better understood and better trained for.”