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The IDD Gap

By Sue Coyle, MSW

Social work students receive minimal education on how to best serve individuals with intellectual and developmental disabilities.

When Mary H. Berlin, MSW, LSW, social work supervisor, first began working at Easterseals 20 years ago, she had limited experience directly serving individuals with intellectual and developmental disabilities (IDD). She relied on her education and previous experience to help her. “A social worker is a social worker,” she says. But very little of that background—particularly the coursework—was specific to IDD.

The same is true today of the BSW students Berlin supervises each year. Though they may have an interest in and some personal experience with the population, their social work education has, most likely, barely touched on IDD. Should these students continue on for their MSWs, the same will be true—regardless of their desire to work with the population.

The social work curricula at all levels lack significant content about working with individuals with IDD. This gap is a disservice both to those individuals and to the social workers who serve them.

The Need
One may assume that working with individuals with IDD is a specialty—something reserved for social workers in settings such as Easterseals. But that’s far from the case. “Every social worker is going to work with people with IDD and their families,” says Samantha Fuld, DSW, MSW, a clinical assistant professor at the University of Maryland School of Social Work, who describes the likelihood of a social worker not doing so as “virtually impossible.”

Fuld continues, “They are going to show up in every social work service setting,” noting that individuals with IDD tend to have more interaction with the child welfare system and with school social workers. “There have been studies on the number of people who are currently incarcerated and have some kind of IDD or learning disability,” she says. “Even when people aren’t presenting for IDD-specific services, we’re working with them.”

That is, in part, because the prevalence of IDD is greater than most know. In fact, an estimated 1 in 6 children have a developmental disability, and by 2030, an estimated 1.2 million adults over the age of 60 will be individuals with IDD. Fuld notes that the prevalence in the general population is not fully grasped.

“The reality is that to my knowledge there’s no good data about the prevalence of IDD in the general population, because it’s only been in the last couple of decades that we’ve really taken note of the needs of this group of people. Data tracking didn’t start in earnest until about 2000,” she says.

What is known is that those with IDD and their families often need services to help them throughout the lifetime, not just in the first years when early intervention is offered. For example, researchers have estimated that potentially more than 70% of individuals with IDD may have a mental health condition. Comparatively, 1 in 5 adults in the general population are estimated to have a mental illness.

Despite the prevalence and need, as aforementioned, very little is offered to prepare social workers to serve people with IDD. According to the Council on Social Work Education, 20 of the 863 listed schools of social work offer a concentration in Disabilities. However, Fuld notes that at least one of the schools currently listed no longer offers such a concentration. Additionally, it is unclear what “Disabilities” encompasses; it is not specific to IDD.

Rather, students and current social workers most often learn through experience. That experience may come in the form of an internship or it may happen in the workplace, after a BSW or MSW has been earned. The latter situation is most likely for social workers who are not working solely with the IDD population but rather are encountering individuals in different service sectors. This leads to a learning curve that can delay getting individuals with IDD the services they need.

“A lot of our families need someone who is extremely knowledgeable about the local resources,” Berlin says. “A great way to connect with a family is to provide them with something that changes their life right away.” She describes a social worker at a different agency who was not familiar with the resources that could best help the individuals and families he was working with. “He felt incompetent,” she says.

The Stigma
One of the reasons for the lack of IDD-specific curricula and training is likely the stigma attached to individuals with IDD. Most people have an image of a person with IDD in their mind. That image carries assumptions about what a person with IDD is capable of—or rather, what they are limited to.

“There is this conception that someone with IDD has severe impairments that mean they need full help their entire lives. That’s just not at all the way social workers should see any person,” Fuld says. “And it’s not what the data bear out. Most people with any type of IDD, whether it’s from a known cause or whether it’s organic, fall into a mild IDD category.”

Nonetheless, that image has historically carried over into how and to what degree social workers believe they can serve the population. Fuld says that until recently it was assumed that individuals with IDD could not take part in psychotherapy, for example.

The Maine Psychological Association further explains that “contributing to this misunderstanding was ‘diagnostic overshadowing,’ the belief that behavioral and emotional challenges resulted directly from a person’s cognitive impairment ... instead of recognizing the same symptoms observed in people without [intellectual disabilities], problems that can be diagnosed and effectively treated were ‘overshadowed’ by the presence of intellectual disability.”

Within MSW programs, a similar attitude persisted. If and when IDD was discussed, the focus was on diagnosis, behavioral interventions, and parental support. “It is in line with the medical model,” Fuld says. “Someone has this diagnosis, we label them.”

She adds, anecdotally, that when she was working toward her MSW, “I wanted to work with people with autism, particularly doing clinical work. I was strongly discouraged by my academic advisors from pursuing this area of practices, as they felt people with IDD just didn’t have much potential.”

The good news is the stigma about individuals with IDD and the assumptions that come with that stigma are becoming less prevalent. “It’s changing in a positive way since I’ve been a social worker,” Berlin says. “It still exists, but I definitely think many people are getting more educated.”

As a better and more positive understanding of individuals with IDD develops, both Fuld and Berlin hope that social work programs will begin incorporating additional coursework. “Having a class or two in the curriculum regarding the special issues that these families and the individuals face—and the challenges they face—that would be an opening,” Berlin says.

Those courses do exist, but to a limited extent. “While they are likely not widespread enough throughout MSW programs, there are several that offer an elective course in developmental disabilities. These electives can vary widely in terms of whether they’re focused on clinical or macro realms, age ranges they cover, whether they’re specifically focused on developmental disabilities or disability in general, and the extent to which they include critical social perspectives,” Fuld describes. The University of Maryland offers one such elective, which focuses on serving children, adolescents, and young adults, as well as their families.

However, with just one course, there is limited availability. Fuld would like to see IDD woven more deeply into the curriculum, so that a wider swath of students can gain at least some understanding of what serving individuals with IDD can entail.

She is hopeful. “I do think that with the current push toward antioppressive social work, which understandably right now is focused on racial justice and criminal justice reform, there is some recognition that you can’t talk about these things without talking about ableism.

“I am hopeful from that perspective that there are going to be some changes with social work education,” Fuld says. However, she notes that in order for that to happen professors and field placement supervisors will need to recognize and understand ableism and have a grasp of the neurodiversity movement.

In the meantime, social work students and practicing social workers will need to continue learning about individuals with IDD as they have been doing for many years—in the field.

— Sue Coyle, MSW, is a freelance writer and social worker in the Philadelphia suburbs.