S2E4: Who Supports People with Developmental Disabilities?

Direct support professionals are vital to individuals with intellectual and developmental disabilities, as well as their families. While these workers provide critical support, our country has a long way to go in ensuring they are respected and fully recognized.

In this episode, host Robert Espinoza speaks with Joseph Macbeth, CEO and President of the National Alliance for Direct Support Professionals (NADSP), about the purpose of direct support professionals, how to strengthen these jobs, and where government should focus its efforts.

Robert Espinoza: What would happen to families everywhere if more than 5 million direct care and childcare workers in this country were to vanish overnight? Welcome to Season 2 of A Question of Care, a podcast that explores this question through different viewpoints and topics. I'm your host, Robert Espinoza, a national expert and frequent speaker on aging, long-term care, and the workforce. In this episode, we'll explore the intricate role of direct support professionals with our expert guest, Joseph Macbeth.

Joseph Macbeth: My name is Joe Macbeth, and I'm the president and CEO of the National Alliance for Direct Support Professionals.

Robert Espinoza: Joseph, can you please define for our audience what exactly is a direct support professional?

Joseph Macbeth: Sure, I'll give it my best. I've been doing this for 40-something years, and I still find it hard to describe adequately what direct support professionals do because it's such complex work. They help people with disabilities in realizing their full potential and becoming valued and participating members of their community.

They provide personal care, of course, but their job goes beyond caregiving.

They're helping people develop and maintain healthy relationships. They're helping people do all types of community activities, helping people find and keep competitive and integrated employment, helping people connect with their communities at-large, at home, at work, at play. They're involved in, virtually, every aspect of people's lives,. And their work is largely determined by the unique needs and preferences of the people that they support.

So, not only is every day different, but every work experience, every interaction is different because you're working with different people.

Robert Espinoza: I wonder if you could share a little bit more about the people they're supporting. Who are these people in general if you can describe them in more detail?

Joseph Macbeth: Sure. So, direct support professionals work supporting people with intellectual and developmental disabilities, both children and adults. But primarily and for the most part, children are living at home with their families, and direct support professionals may be working in that family home or providing respite services for that child so their primary caregivers, their moms and dads, can take a break.

But, for the most part, they're working in community-based settings, in residential settings, in day settings, helping people live and contribute to their communities. And it's typically people with intellectual disabilities, people with physical disabilities, people who are on the autism spectrum, and at every age, from birth to death.

Robert Espinoza: When we look at the demographics of the direct support professional workforce, who are they?

Joseph Macbeth: So, demographically and historically, the direct support profession has consisted primarily of women and majority of women of color. We're also seeing this workforce getting a little bit older. I think the median age is somewhere in the late 30s, early 40s at this point. We're also seeing that most of them have some level of college, if not a college degree, although it is not required to have a college degree to be an effective and competent direct support professional.

But it's primarily women, about, I'd say between 75% and 80% women, and we're trying to find a new generation of worker, pipelines from high schools, or community colleges, or people who are in early retirement age to expose those folks to this work. Because, as I'm sure we're going to discuss, we are in the midst of a very long-term workforce crisis, and there's simply not enough [workers] to meet the demand.

Robert Espinoza: I imagine you get this question quite a bit from workers: what are the key qualities and skills that make a successful direct support professional?

Joseph Macbeth: Well, the work is complex. And as I said earlier, the work is different every day. It requires very strong communication skills, the ability to build relationships with the people that they support and their families. They need to possess good judgment. I think they need to be flexible and resilient. It can be a highly rewarding job, but it can also be a challenging job.

So, you need to be able to have good judgment, good communication. The ability to not only to follow a person's plan, but to be able to pivot when something happens. In my experience, direct support professionals and care workers in general are probably the most resilient and flexible professionals out there. They have to be able to adjust their daily routines, their daily activities on a moment's notice. And they did that really clearly at the onset of the {COVID-19] pandemic.

Robert Espinoza: Since we're talking about the pandemic, it does seem like a moment in time when direct support professionals in the broader long-term services and support industry was more visible for many people. And yet it often seems that there are often misconceptions about these workers, about the role of direct support professionals. What are some of those misconceptions that you often encounter, and what do you say to those misconceptions?

Joseph Macbeth: Sure. Well, I think the pandemic lifted the veil about the significance and the importance of care workers. And if there is a silver lining, it has exposed the true nature of these jobs to people outside of our industry. And I think some common misperceptions is, and we see this all the time, that direct support work is entry-level work, and that could not be farther from the truth.

This is not a job that just anybody can do. This is a job that requires a high level of skill and a high level of the ability to use their own personal judgment. In fact, when you take a look at the work, every industry has a benchmark for quality. Whether it be manufacturing, finance, healthcare, caregiving, there are benchmarks for quality. And I would argue that in the world of direct support professionals, the benchmark for quality is: are we helping the people that we support achieve their outcomes? Are we helping them achieve the things that are important to them?

Small things like balancing a checkbook or preparing a meal or doing one's laundry or maintaining their household. Or big things like helping people own their own homes and find and keep employment. Then we have to really take a hard look at is this job really an entry-level job? Of course, it isn't. This is a job that requires a real professional, and I think we're short-changing 1.5 million direct support professionals in this country who do their work that leads to quality during every interaction that they support people with.

Robert Espinoza: Joseph, I'm wondering if you have any personal anecdotes or experiences that underscore the importance of direct support professionals in the lives of people with intellectual and developmental disabilities.

Joseph Macbeth: Sure. I think we used to do focus groups, and we still do focus groups, and we want to hear firsthand from direct support professionals themselves. In research and in doing surveys, we're often researching and seeking information from their employers. But we want to hear from direct support professionals themselves. And part of it is talking about: what are your skills, these complex skills that are required from direct support professionals, and the relating ethical values that go along with it? And we asked DSPs [direct support professionals] to tell us stories. How have you influenced somebody's life? Tell us a story.

And there's this one guy, he shared a story that is he was supporting this elderly man who just moved into this residential facility, and people didn't really know him. And he was telling this direct support professional that he has a brother that he hasn't seen in many, many years, and he wants to see his brother. So, this direct support professional gets that information, and you just can't leave that. You have to follow up on it. And sure enough, the direct support professional through social media located the brother, talked with his supervisor about connecting the two brothers that hadn't seen each other for years. And don't you know that the brother felt really guilty, the brother without the disability felt very guilty. And they connected with each other.

And it was just a story of a direct support professional who was paying attention, who received very important information, and in a very meticulous, very professional, very ethical way. Because, let's face it, some family members may not want to have a connection, and we have to respect that. But this direct support professional made a big difference in that man's life.

Robert Espinoza: Joseph, you shared some remarkable insights and stories about the enormous value of direct support professionals, but I want to talk a little bit about the crisis that you mentioned that's facing this job sector. What are some of the challenges faced by direct support professionals in their day-to-day work?

Joseph Macbeth: Well, I think, if you surveyed 100 direct support professionals, Robert, 99 of them would say that the wages are not adequate. That’s not a living wage. And this is not a new issue. Direct support professionals have always been low-wage earners. And it's complicated, but it's, in large part, due to society that may not value people with disabilities, therefore they may not value the people who support people with disabilities. Wages are a long-term issue.

Many direct support professionals work more than one job. Many of them work a lot of overtime, and they are suffering. We just helped the state of New York do a survey with nearly 4,000 direct support professionals. Half of them report that they have insecurities around housing and insecurities around food. And when we are trying to build a profession, build a workforce who have to work 80 hours a week to make financial ends meet, there is a real problem with our financing of health care to pay direct support professionals. So, wages are the primary issue.

But, of course, that's not the only thing. A lack of recognition, professional recognition through a job title. A lot of job titles are recognized by the Bureau of Labor Statistics (BLS). For example, personal care attendants, home health aides, certified nursing assistants, their job titles are recognized by the Bureau of Labor Statistics, and you get good data from BLS about the future projections and the need for future workers. Direct support professionals are kind of grouped in with those other caregiving occupations, those other caregiving titles.

And all caregiving titles and all of those occupations, let's make no mistake, they're all essential work, and they're all critical work, but they're not the same. When you take a look at the unique skill standards, the set of skills that are required by direct support professionals, and you measure them against others, you can see the differences between the work. But when you talk about the direct support worker who supports people with IDD, we need to have that Standard Occupational Classification so we can have good data and projections for the future.

I think we need to build a career ladder to keep high-performing direct support professionals in their jobs and recognize them for the highly skilled worker that they are, and pay them accordingly as they advance their skills and demonstrate their skills through some sort of objective third party measurement. We should try to pay them more to keep them. When you have a turnover rate hovering around 50%, that means five out of 10 direct support professionals who are hired in 2024 will not be here in 2025. And they're leaving for better-paying jobs.

They're leaving because they don't feel like they're being heard or recognized, and we can fix that. We know how to fix that. We need to fix it by recognizing their high skills and compensating them accordingly. So, career ladders, professional recognition, a living wage, better supervision. The business acumen of the employers need to understand that direct support professionals struggle with that home-work-life balance, and they may have other caregiving responsibilities at home. We need to make sure that we can provide them with a flexible schedule that accommodates their home life.

We need to be able to provide them with adequate time off, paid time off. One of the issues that they struggle with the most is mandatory overtime, when the person who is scheduled to come in and relieve them of their duties doesn't show up and they are mandated to stay. And you have to stay, that's just the way it is. We have a responsibility and a duty to make sure that people are safe. But when DSPs are working extremely long hours, they put themselves at risk, and they put the people that they support at significant risk. Tired people will make mistakes. So we need to also work on the supervisory skills and the business acumen of the agencies who employ direct support professionals. So, it's a really complex thing.

There's no one simple solution, Robert, I think it's a laundry list of things that we can do.

Robert Espinoza: Absolutely. Joseph, I wonder if you can paint a picture for us of what a society would look like if there were no direct support professionals to support people with disabilities. How would our society look differently if all direct support professionals disappeared?

Joseph Macbeth: Well, that would be a very bleak picture to paint, Robert. Listen, it would mean that many people with disabilities would either be living with family members or in public institutions. And, prior to the 1970s, if you had an intellectual developmental disability and you didn't live with family, you lived in these institutional settings that were not person-centered. You did not have many valuable items, personal items. You were not seen as a contributing member of society.

These institutions were stuck at the edge of town somewhere, and you were segregated from community. And I would shudder to think that that is a future that anybody with an intellectual or developmental disability would ever want to revisit.

So, we need to build this robust new profession. I see direct support professionals as social educators. And when you take a look at some other countries, particularly Scandinavian countries like Denmark or Sweden, they see direct support roles as social pedagogues, these social educators. And they are held to the same esteem as teachers or other healthcare professionals. And that's a lofty goal for us, but without a robust and competent, stable workforce, people with disabilities’ lives would change drastically, and they would not be part of the fabric of society today.

Robert Espinoza: Joseph, you've talked a little bit about some of the interventions and solutions that we need to implement in order to improve jobs for direct support professionals, and you have one at your current organization, the National Association for Direct Support Professionals. You run a national certification program for these professionals who are working in community human services. I'm wondering, can you tell us about the program and why it's so important?

Joseph Macbeth: I would love to. Thank you for asking, Robert. So, we created a three-level certification program that's based on digital badges. We call it the E-Badge Academy. And I mentioned earlier about quality and quality being defined at the point of interaction, and direct support professionals helping people achieve those outcomes. And outcomes are never an accident. We wanted to see what direct support professionals are doing, and we created these badges directly related to skill standards.

We use the Centers for Medicare and Medicaid Services core competency set. So, each badge is related to a skill standard. We want direct support professionals to be more intentional about their work. Post-pandemic, we're starting to see through funding through the American Recovery Plan Act [American Rescue Plan Act], the ARPA funds that have gone to states, several states are using and piloting the E-Badge Academy to build their workforce. And I could not be happier about that. And we've gotten some really good results from states like New York, Pennsylvania, Georgia, Tennessee, and Alaska, and others will follow. We do not, of course, have the authority to… Once you achieve a certain level of certification, we can't provide them with a salary increase, or even a bonus, for that matter, that's up to the states.

So, when you talk about states and wages for DSPs, they are determined at the state level. And states after we submit our evaluation of these pilot programs, they're going to have to make a decision, “Can we continue certifying direct support professionals through this E-Badge Academy?” And once they achieve a level of certification, their wages go up in a fair way. We're not talking 30 cents or 40 cents an hour, we're talking a couple of dollars an hour, something meaningful. And that's the career ladders that we're talking about. We need to build and recognize the direct support professionals' high level of skill.

Robert Espinoza: Joseph, let me ask you one last question. If you could wave a magic wand and implement one significant change to better support direct support professionals and the people they engage, what would that be?

Joseph Macbeth: Wow. The general consensus would be, wouldn't it be great if you had a magic wand and you just waved it, and everybody who does direct support would earn a living wage? And not just a living wage, but a decent wage that leads to a decent lifestyle. But that would be a cop-out because it's a lot more complicated than that.

I think, in terms of supporting the direct care workforce in the IDD [intellectual and developental disabilities] sector, a magic wand would be securing that occupational classification, professional identity.

And then, from that, you would be able to build career ladders, you would be able to build those career ladders that are tied to higher wages. I think the Standard Occupational Classification is a necessary first step that would open many other opportunities for the direct support worker.

Robert Espinoza: Joseph's magic wish for a standard occupational classification code for direct support professionals might seem technical, but it could transform this workforce and the people they support. These codes help government leaders and businesses collect, calculate, and share data about these workers. With such a code, we could, for example, determine the number of direct support professionals in this country and their challenges.

We could create targeted solutions at the proper scale. Such a code would also help us assess if people with intellectual and developmental disabilities have enough support from these workers.

However, the need for improved classification codes extends beyond direct support professionals. Frankly, our federal government needs to update all of its classification codes related to care work. This would help identify these workers, understand their experiences, and find new ways to support them so that they can thrive financially, and we can garner quality support.

As troubling as these antiquated codes is the inconsistency in the definitions and the titles of direct care workers across the country. Walk into any home health agency or nursing home around the country and you'll find any number of titles for these workers. There is also no standardized federal definition that captures their core skills and specifies what is needed for different settings or populations. This inconsistency makes it difficult to create uniform laws for them. A colleague once pointed out that the lack of a standard definition for direct care workers shows how much we undervalue them. We can't even agree on what to name them or how to describe their roles.

Thank you to my guest, Joseph Macbeth, and to you, our listeners. If you enjoyed this episode of A Question of Care, please share it on your social channels and stay tuned for future episodes. This podcast was produced by me, Robert Espinoza, in partnership with Modry Media. Please make sure to rate and review the podcast wherever you're listening.