A Foundation For Health And Well-Being: Meaningful Employment

Wearing a black polo shirt stitched with a Vanderbilt University logo, Sean Jefferson, 26, nestled his large frame into an armchair in the compact living room of his studio apartment in Nashville, Tennessee. Leanne Brooks, a social worker, sat across from him on the matching loveseat. It was a hot, humid late afternoon in July. Jefferson is autistic and speaks in quick, monotone bursts. But Brooks knows him well. She easily drew him into a conversation about sports, a passion they share. Jefferson, a football and wrestling fan, lit up as he told her about the tickets his aunt has said she’ll buy him to an upcoming WWE professional wrestling event.

“That’s gonna be a blast,” Brooks said, smiling at Jefferson.

Brooks and Jefferson met in 2017, when Jefferson enrolled in a program called Employment and Community First Choices (ECF CHOICES) for people with intellectual and developmental disabilities (IDD) that was created and paid for by TennCare, the state’s Medicaid program. Brooks is his support coordinator, part of a team that helps Jefferson work and live independently. He’s a cashier at a Vanderbilt University student store and has lived on his own in a small apartment complex since 2016.

“I get up every morning happy and ready for work,” Jefferson said. He has a team that supports his independence, including Brooks, a job coach, and direct service providers who help him grocery shop and manage other household needs. All of these services and more are included in the program, which is administered by the managed care organizations established under contracts between TennCare and three insurers: UnitedHealthcare Community Plan, Amerigroup, and BlueCare.

Shannon James, Jefferson’s aunt, explained that the program has helped Jefferson create a full life for himself, including playing flag football, volunteering with the Vanderbilt football team, and lifting weights at the gym. He attends dinners and movie nights hosted by the supportive housing nonprofit that provides his apartment.

Work is his anchor, and his on-campus position was a dream come true. He worked at Walgreens when he met Brooks—a job he found through a transition program to help people with IDD find work after graduating from high school. “He was like, you know, I like my job just fine, but what I really want to do is work at Vanderbilt,” she recalled. “And here we are.”

ECF CHOICES is based on the premise that employment provides a crucial boost to the well-being of people living with IDD by strengthening their ties to the broader community and creating routine social interaction at work. According to a 2020 evaluation of the program, ECF CHOICES met four of its five main objectives: It expanded access to home and community-based care for people with IDD, provided more cost-effective services, increased the proportion of Medicaid spent on home and community-based care, and increased the number of working-age adults with IDD enrolled in home and community-based care earning at or above the minimum wage.¹ More than 500 employers have hired clients of ECF CHOICES, according to Katie Moss, chief of the Long-Term Services and Supports Division of TennCare.

As the name suggests, giving people with IDD choices, not just about whether they work but where they work, is a crucial part of the program. The program’s fundamental idea is that people with IDD can and should make decisions about their lives, and it represents the latest in a slow yet profound shift that’s unfolded since the 1960s. As advocates, policy makers, and care providers engaged in a decades-long struggle to develop policy and practices that reflected these new perceptions of the potential independence of people with IDD, employment proved to be an integral component of change.

Policy Lags Changing Perceptions

Until very recently, integrated employment settings for people with IDD were pretty rare; far more common were specialized workplaces, in which people with IDD worked alongside others with IDD, doing repetitive tasks, often at substandard wages.² The isolation of people with disabilities in workplaces, usually called sheltered workshops, began in the late nineteenth century.³ Substandard wages for people with disabilities were codified into law during the New Deal era.³ The number of people with IDD working in sheltered workshops continued to rise in the twenty-first century and increased by nearly 34 percent between 1999 and 2015, whereas integrated employment rates remained nearly flat, increasing only by 4.6 percent. About 610,000 people with IDD worked in sheltered workplaces in 2015 compared with about 113,000 who worked in integrated employment. The people with IDD continued to perform menial, repetitive work, such as shredding paper or slicing open boxes, with little hope for advancement or a more complex work assignment, regardless of their capabilities.²

The practice of sheltered employment continued despite shifting perceptions of people with IDD and new laws that safeguarded the rights of people with disabilities—and those with IDD specifically.⁴ A focus on deinstitutionalizing people with IDD and integrating them into the community started in the 1960s.⁵ The idea of supported employment—that even the most severely disabled people could work in integrated settings with the assistance of job coaching and other services—was widely accepted by the 1980s and 1990s.⁶

Meanwhile, integrated work was recognized by the federal government as integral to the health and well-being of people with disabilities. The Rehabilitation Services Administration “limited the meaning of a successful employment outcome to integrated outcomes only” in 2011, according to a National Disability Rights Network report.⁴ The report also noted that in a 2011 bulletin, the Centers for Medicare and Medicaid Services (CMS) spelled out its position in no uncertain terms: “Work is a fundamental part of adult life for people with and without disabilities. It provides a sense of purpose, shaping who we are and how we fit into our community. Meaningful work has also been associated with positive physical and mental health benefits and is a part of building a healthy lifestyle as a contributing member of society.”⁴

Yet Medicaid still funded sheltered workshops despite their seeming misalignment with the agency’s purported philosophy and that of other federal agencies. And although the Americans with Disabilities Act of 1990 protected people from wage discrimination, a provision of the labor codes (Section 14c of the Fair Labor Standards Act of 1938) allowed the practice of subminimum pay to continue for people with IDD.

Then, during the Obama administration, a series of horror stories about the exploitation of people with IDD in these workplaces exploded in the media. It began in 2009, when reporting by the Des Moines Register revealed deplorable conditions for men with intellectual disabilities who worked inseminating turkeys. Living in unsanitary conditions at an Atalissa, Iowa, labor camp, the workers had little to no freedom of movement and were paid a meager $65 per month.⁷ The Atalissa operation had continued for nearly thirty years before it closed after the Register published its story in 2009. A New York Times exposé and documentary sustained public interest in and outrage at the sheltered workshops after the closure.⁸ Media reports on the limited employment opportunities at places such as Goodwill and intense advocacy work by organizations such as the National Disability Rights Network also created pressure for change.⁷

In 2014 CMS issued a home and community-based settings rule aimed at discouraging the use of Medicaid funding to support services that retained the characteristics of institutions, especially isolation from the community at large.⁹ Funding was tied to ending isolating practices such as segregated workplaces—a connection that was made more explicit by rules revisions in 2019.¹⁰ Since then, the number of people in sheltered workshops has dropped accordingly. However, as of April 2022 more than 37,000 people still worked in segregated workplaces for subminimum wage, according to the Department of Labor.¹¹

Creating New Solutions

Tennessee has its own troubled history with caring for people with IDD. In the 1990s advocacy groups and the federal government sued the state for inadequate care of institutionalized people with IDD—lawsuits that were ongoing for twenty-five years. The last suit was dismissed in 2017, when a federal court judge found that “the state had complied with all conditions of a court approved plan to improve services and the quality of life for citizens with intellectual and developmental disabilities.”¹²

The state’s settlement with plaintiffs, reached in 2015, required it to close all remaining institutions, shift people with IDD out of congregate settings, and develop programs for quality assurance and protection from harm. The state also stepped up efforts to offer people home-based care. To make it happen, officials used Medicaid Section 1915(c) home and community-based services waivers, which were designed to keep people with intellectual disabilities living in their communities.¹³ The first waiver was issued in 1987, followed by waivers in 2000 and 2005 to expand home-based care offerings.

“By every measure possible, the transformation has been a remarkable success,” said Judith Gran, an attorney for People First of Tennessee, one of the advocacy groups that sued the state in the 1990s, in a statement featured in a press release after the last suit was dismissed.¹²

Even with three separate Section 1915(c) Medicaid waivers, however, there weren’t enough resources to meet the demand for help. The Section 1915(c) programs had a waitlist of 5,000 people with intellectual disabilities seeking home-based care in 2016, according to Moss. The waivers also didn’t apply to people with developmental disabilities such as autism; they only assisted people with intellectual disabilities.

In response to the previous approaches’ ongoing challenges, TennCare’s Long-Term Services and Supports Division developed ECF CHOICES, a program that, by design, helps people with IDD “achieve their personally defined goals and meaningful employment and community integration,” Moss explained.

Creating a new program was easier than reforming the existing programs developed under the Section 1915(c) waivers, Moss said. “We could use this program to address the fiscal and capacity-related issues that were ongoing,” she explained. Bringing down costs was key to offering home-based care to more people, she said, so ECF CHOICES took a different fiscal approach from the outset. Instead of a traditional fee-for-service model used under the Section 1915(c) waivers, ECF CHOICES formed managed care organizations that would administer the program.

Integrated employment was at the center of the new plan from the beginning. “It was a very intentional focus on employment because what we do know is that employment is tied to positive health outcomes,” Moss said. “It is tied to independence. It is tied to mental health. Financial stability is tied to overall positive health outcomes and mental health outcomes. And we want to do away with the stigma that just because someone has an intellectual and developmental disability…they cannot be a meaningful participant in the community up to and including employment.”

ECF CHOICES is outperforming the state’s Section 1915(c) waiver program on several measures, including employment.

ECF CHOICES is outperforming the state’s Section 1915(c) waiver program on several measures, including employment. Only 12 percent of people enrolled in the state’s 1915(c) waiver program are employed; for those enrolled in ECF CHOICES, that number jumped to 24 percent by the end of fiscal year 2021, Moss noted. Moreover, for the first time, people with developmental disabilities are also being served by the program.

ECF CHOICES has also decreased costs for home-based services dramatically. In the Section 1915(c) waiver programs, the average annual cost of services per person was $95,000 in the 2020–21 fiscal year; those costs were $25,000 per person for ECF CHOICES that year, according to Moss.

The transition to managed care was carefully managed. Expectations for what the health plans would provide to people enrolled in ECF CHOICES were painstakingly spelled out in an agreement between the plans and the state.¹⁴ A publication by the Commonwealth Fund called it “a model for other states considering a transition from fee-for-service to managed Medicaid for beneficiaries with disabilities.”¹⁵

The significant cost decrease was also achieved in part by aligning financial incentives, Moss said. When people in ECF CHOICES are meeting their goals, their service providers reduce how many hours they spend with their clients. Yet the service providers’ hourly rates increase as their hours are reduced. Job coaches who help clients 100 percent of the time, for instance, make about $26 an hour, but that rate jumps to $34 an hour when they assist clients on the job for 80 percent of the time, Moss reported.

Evaluation of the program shows that the sharp decrease in costs has not come at the expense of quality of life for people enrolled in ECF CHOICES compared with people enrolled in the Section 1915(c) waiver programs. People in both programs score nearly identically on measures such as their ability to make everyday choices and larger life decisions and how well integrated they are into their communities, based on surveys administered to clients and their family members.¹⁶

Challenges remain, especially for people who are waiting to enroll in ECF CHOICES. Historically, there has been a waitlist of 4,000 people for ECF CHOICES. Moss said that she expects that the recent funding the program received from the American Rescue Plan Act of 2021 has reduced the number of people waiting for services. “We’ve had a had a pretty high increase [in capacity] just recently in our ECF CHOICES program because we were able to draw down the [American Rescue Plan Act] dollars for 2,000 new slots,” Moss explained.

This is probably one of the most exciting times to work in this field, she added. “Not only do we get to support individuals with intellectual and developmental disabilities to achieve goals that fifty years ago nobody thought was possible, but we also have this kind of once-in-a-lifetime funding.”

Choice In Action

Person-centered care is at the heart of the new program. When a new member joins Amerigroup as part of the ECF CHOICES program, for instance, the first step is a thorough assessment of the member’s goals and any possible risks to their safety and independence. But assessment isn’t confined to the initial intake, Brooks explained. “It’s an ongoing assessment as their life changes, as their goals and needs change,” she said. People don’t always know what they want in the initial meetings, and goal setting becomes a process and an education for members about the services that are available to them, she added.

Once members’ employment goals are set, employment specialists help connect them to jobs and assist them through the hiring process. Paperwork can be a daunting task for people with IDD, Brooks noted. And once work begins, members are supported by a job coach, who shadows and assists them throughout their working hours. As the member becomes more comfortable in their job, the job coaching hours are reduced accordingly.

A crucial part of the ongoing support is identifying potential obstacles to members’ goals and then removing those obstacles.

Another crucial part of the ongoing support is identifying potential obstacles to members’ goals and then removing those obstacles. Often, those obstacles are related to low incomes. “I’ve got folks that I’ve helped to get air conditioners or food,” Brooks said. “We really have to look at all those hierarchies of needs and try to meet them.” Housing is another pressing need for people with IDD, and Brooks has successfully placed people who want to leave a parent’s home and live on their own in supportive housing in the community. Transportation is another challenge, and ECF CHOICES helps with Lyft and Uber vouchers, as well as technical assistance that shows people how to use the apps.

This tailored support is what helps Amerigroup keep so many of its ECF CHOICES members working, explained Tina Brill, the vice president of Long-Term Services and Supports at Amerigroup. Their integrated employment rate for members enrolled in ECF CHOICES is 30 percent, Brill said. (The current average for people in ECF CHOICES across all insurers is 27.6 percent, according to Moss). Work is crucial to the members’ well-being, Brill added. “With the focus being community and integrating supports, employment brings that,” she explained. It brings natural peer groups, natural friends, natural support that brings a lot of independence—not only the monetary independence, it brings a lot of other life skills and life supports.”

It’s also important not to downplay the financial importance of work, added Amerigroup employment specialist Stephanie Potter. She pointed to a long-standing association between IDD and poverty.¹⁷ “We really do feel like employment is one of the only ways to really help people [who are on Social Security disability] move out of poverty,” Potter said. “Nobody can live on Social Security alone and really not be in poverty. And so there’s so many people with disabilities living in poverty.”

The depth of need requires an entire team of specialists on hand dedicated to maintaining each member’s independence—direct service providers, service coordinators, and employment specialists—as well as in-depth knowledge on the part of people such as Brooks and Potter about other resources and social services that can help cover needs that are not paid for by ECF benefits. Moreover, Brill said, the Amerigroup teams work closely with health care and service providers. They routinely check in with their clients’ families or other caretakers, who are an active part of solving problems as they arise with the rest of the support team.

Independence As A Lifelong Project

The need for Brooks’s emphasis on continual assessment was made clear in our July visit to Jefferson. Brooks leaned forward, toward the armchair where he was sitting. “Do you want to tell her about something very sad that happened?” she asked gently.

Jefferson started to fidget. “That happened two years ago,” he said, rushing through the words. “I lost my beautiful mother.” Jefferson’s mother was his caretaker. She died unexpectedly of a massive heart attack. Her sister, Jefferson’s aunt Shannon James, happened to be in Nashville visiting when she died.

Amid the shock and grief came the immediate stress of managing everyday details, James said. Brooks had to meet her right away to make sure that Jefferson’s basic needs were met. “Like how are we going to get the rent paid? The cell phone bill? Social Security?” James recalled.

After his most pressing needs were squared away, it was time for the larger questions, James said. She lived in Biloxi, Mississippi. Where would Jefferson live? Mississippi doesn’t have a program like ECF CHOICES, she said—if he left the state, he would have to leave his independent life behind, too. “That’s a thing I weighed heavily on,” James said. “He would not have the freedom or the liberty to do what he does there.”

Brooks and James asked Jefferson what he wanted to do. “I’ll think about it,” he replied, “but I want to stay here.” So James has provided emotional and practical support from afar. When problems at work or elsewhere arise, she gets on the phone with Brooks. After Vanderbilt reopened from the pandemic shutdown, for instance, Jefferson was switched from a day shift to a night shift at the student store. Those hours didn’t work for his needs, James explained, and Brooks then worked to get Jefferson back on the day shift.

James also looks after Jefferson’s finances and pays his bills, although she plans to teach Jefferson how to do it himself eventually. “I won’t always be here,” she said, a fact that her sister’s unexpected death made all too tangible.

“I hear that a lot,” Brooks replied. “That’s a very common fear.”

“We will always take care of him,” she assured James. “We will make sure that he is getting what he needs.”

NOTES

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