Support Work: Realizing Inclusion

February 22, 2024

Despite decades-old federal law and a landmark U.S. Supreme Court decision requiring that people with intellectual or developmental disabilities (IDD) receive support services in the most integrated possible setting, crisis-level worker shortages have made inclusive community living unachievable for far too many people.

Now, compelled by U.S. Department of Justice consent decrees or buoyed by American Rescue Plan or other new funds, or a combination, states are boosting pay and benefits for direct support professionals (DSPs), who provide a range of services for people with IDD, from job coaching to personal care to fighting loneliness and depression.

“We’re seeing more action in states than ever in terms of identifying the need for a strong direct-care workforce,” said Amy Hewitt, director of the University of Minnesota’s Institute on Community Integration.

“Through these consent decrees, the DOJ is starting to connect the dots between the dream of inclusion and the reality of making it happen. Whether it’s competitive, integrated employment or any other promise of equity that was made to people with disabilities, these consent decrees are ensuring our promises are kept,” Hewitt said.

“The great promise of the Disability Rights Movement and the federal legislation that followed was that people with disabilities would be freed from institutions, that they would live and work in the community and have real relationships with friends and family in the least restrictive settings possible. Those were the goals of the law, and the outcomes we are paying for in the requirements of the legislation, but they can’t be realized without competent, and stable, professional support staff.”

The Americans with Disabilities Act of 1990 and the U.S. Supreme Court’s Olmstead v. L.C. nearly a decade later helped close large state institutions, allowing people with disabilities to receive Medicaid-funded services in smaller settings or their own homes. While demand for workers providing those services has increased, wages, which are determined by state legislatures, have been stagnant. Today, about 1.3 million people work as DSPs serving people with IDD.

In Rhode Island, a shortage of workers was a critical reason why the state was unable to comply by this year with a 2014 Justice Department directive to free people with IDD from segregated workshops and day programs and help them find jobs paying at least minimum wage or day services that provided meaningful activities. Now, the court is demanding the state invest in stabilizing the DSP workforce so those things can happen. The state hired ICI’s Direct Support Workforce Solutions (DSWS) last year to work with employers, state officials, and related stakeholders to improve recruitment and retention of DSPs. Using robust hiring and retention strategies and new methods for evaluating workforce data, Hewitt said DSWS and partner organizations around the country are beginning to see promising results.

“It starts with executive-level people who see the purpose for this and become involved. If you leave it to human resources, you’re missing a key component,” said Judy Niedbala, chief executive of Perspectives Corp., a large service provider in Rhode Island that has worked with DSWS since 2019. “This is about building culture and opportunity for people.”

Using state grant funds to help restructure pay scales and offer paid training to obtain professional credentials, along with other incentives, has lowered turnover rates and complaints about service. Cutting expenses associated with turnover also helped the agency pay for other retention benefits, such as a mentoring program, and no-cost ideas such as shouting out DSPs via social media when they earn credentials and suggesting DSPs add their credentials to their e-mail signatures have helped build the new culture, Niedbala said.

“If you look at this as just getting more money for people, you might as well throw it out the window because it’s going to be wasted,” said Niedbala, who has been with the agency more than 35 years. “People in this field definitely deserve to get paid more, but that’s not the whole picture.” When DSWS consultants work with agencies, there is a rigorous discovery process to reveal the unique reasons for an agency’s challenges.

“We ask for a lot of data, including turnover rates and costs, vacancy rates, training protocols, hiring procedures, retention strategies, interview techniques, and more. It can be a little daunting, but it helps inform our conversations when we talk with DSPs, supervisors, managers, and leaders,” said ICI’s Hewitt. “Recommendations in the final report, then, are prioritized, with suggestions on critical areas to tackle first, knowing that most often, retention is the best recruiting strategy.”

DSWS consultants use a proprietary database, SupportWise Data, to track and analyze workforce demographics, wages, benefit utilization, vacancy and turnover rates, and turnover costs, among other metrics. They also provide evaluation, training, and other tools, including realistic job previews, which are short videos produced by ICI that are geared to prospective employees. The videos speak frankly about both the joys and challenges of the work.

“We’ve had to make a lot of hard decisions about recruitment strategies and training,” said Casey Gartland, executive director of West Bay RI. “We don’t want to lower the bar just to get people in the door.” Realistic job previews have helped his agency lower turnover costs by preventing hires that aren’t a good fit.

William Menihan, a DSP with West Bay who works in a group home supporting people with disabilities, left a banking job for the role. State-mandated pay increases from $14 to an average of more than $20 per hour today have helped keep him at West Bay for four years, but the intangibles are also important, he said.

“I like seeing the progress when you’re able to help people find a solution to something. It’s real-world stuff,” Menihan said.

Rhode Island is among states with a growing number of people with disabilities and families who are contracting directly with workers for services instead of using a provider agency, noted Kim Einloth, a workforce coordinator with the Paul V. Sherlock Center on Disabilities at Rhode Island College. Along with ICI, the Sherlock Center is also working on provisions of the consent decree.

“We are trying to break down that wall that exists between provider-led services and those directed by people with disabilities or their families,” Einloth said. “We believe about 25 percent of people needing support in our state are now contracting directly, and we have little to no information about how that’s going. It’s so important to capture that data and think about that part of our workforce,” she said. Another aspect of the work involves bringing service providers and others together to focus on improving DSP competencies.

In North Carolina, meanwhile, where a separate Justice Department consent decree calls for community-based services and state-initiated reforms, several new initiatives are underway to strengthen the direct support workforce.

“We have a generation that is aging and realizing they, too, will need support staff, so there is pressure on the workforce from multiple angles,” said Kelly Friedlander , a consultant and former board member of the National Alliance for Direct Support Professionals (NADSP). “There are quite a few workgroups in North Carolina responding and we recently had some legislation that will increase pay, but getting to a baseline of a living wage is difficult in a lot of states, including North Carolina.”

She’s optimistic about the state officials in North Carolina who are overseeing changes to Medicaid implementation, and about the promise of credentialing to create real career pathways for DSPs. She also thinks DSPs will have myriad new opportunities in coming years to fill multiple roles in households as parent caregivers of people with life-long disabilities age and need care for themselves. And she is working with others in North Carolina on developing opportunities for people with IDD to become peer mentors , helping to solve both the need for employment for people with IDD as well as to help alleviate the care crisis.

As ICI and its DSWS group continue to assist service providers around the country as they improve pay and other aspects of the direct care workplace, Hewitt said, a few common themes emerge among successful organizations.

“ICI partners with NADSP and ANCOR on the Moving Mountains Award , which recognizes best practices in this field,” she said. “It comes down to the fact that everyone benefits from competency-based training and credentials, continuing education, ethical decision-making at all levels of an organization, and fair pay. With the movement we’ve seen in several states recently on all these fronts, I think we are beginning to realize the dream.”

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