Social workers who work with people with disabilities do so in many different capacities, from direct clinician-patient relationships to research and advocacy. (Thinkstock/Getty Images.)
Lisa Primm admittedly has a soft spot in her heart for children.
As a disability rights social worker, Primm had as a client a young boy with severe diabetes. He received a dog that was trained to be responsive to the sugar levels in his saliva, and would alert his parents at home—even if they were asleep—and his teachers at school.
“The school initially was resistant to having a dog at school,” Primm said. “So we went in with a trainer who explained everything. It’s quite a process.”
The school allowed the dog in, and while with the boy it alerted to one of the teachers.
“Something was wrong with her blood sugar,” Primm said. “She checked it out and found out she had diabetes and didn’t know it.”
There was another boy, a middle-schooler who was deaf and wanted to be a wrestler. He wanted a sign language interpreter nearby, even though a school policy prohibited someone being close to the active wrestler area.
Primm, who is executive director of Disability Rights Tennessee in Nashville, went to the mat for him—and the school changed its policy.
“Sometimes the successes are big, powerful changes,” she said. “Sometimes they might seem small, like someone wants to go to college and needs help to take the entrance exam. Often times what seems small to us is life changing for them.”
Like Primm, many social workers across the country are working with or on behalf of people with disabilities. And whether it involves a direct clinician-patient relationship or digging into statistics and doing research to promote wider policy changes, these social workers are passionate about what they do.
Fighting for Rights
Michelle Bishop always had one goal.
“I got into social work because I always wanted to work in social justice—do work that would make a difference,” she said. “All social workers want to change the world. If I can do a little piece, I’m making a difference.”
Bishop was a refugee advocate/caseworker and a grassroots community organizer who now is a disability advocacy specialist for voting rights at the National Disability Rights Network in Washington, D.C.
“Disability rights are so essential: the right to a quality education, the right to work, the right to earn a fair wage, the right to vote,” she said. “There are a lot of core values that a lot of people with disabilities still have to fight for. But having the right to vote—it’s essential and important, and it’s at the core of American values and human rights.”
The biggest barriers are discrimination and prejudice, Bishop said.
“Kids with a disability are as capable of achievement as their peers who don’t have a disability,” she said.
Bishop believes many people who don’t have a disability, and don’t know anyone who does, just don’t think about the people who do.
“It’s a status that could happen to anyone, any day,” she said.
And almost everything that is enacted policy-wise “has a huge impact on the population,” Bishop said.
The Americans with Disabilities Act, enacted in 1990, addresses access, bars employment discrimination and promises accessibility to the voting process. The Help Americans Vote Act was passed in 2002 to make voting more accessible for people with disabilities, she said.
Transportation is another challenge, Bishop said. People who drive a wheelchair can have a car adapted so they can drive.
“For people who are blind, that’s not an option,” Bishop said. “If you’re not able to drive, how do you get around?”
Public transit systems must be accessible, she said. But a wheelchair doesn’t fit through a turnstile. And places with elevated transportation leave many wondering not only how they can get on and off the train but how they can get up to it as well.
More areas now have tactile pavement, textured indicators “so if you’re blind, you know when you’re almost to the street or almost to the edge of the platform at a train station,” Bishop said.
There are other positive trends, like person-centered policy, when the person receiving the services directs them, and the money follows the person’s movement. For example, a person receiving Medicaid decides how money will be spent and whether they will stay in their house and receive services or live in a nursing home.
“It’s complicated, but we’ve seen a lot of progress,” Bishop said. “It preserves the dignity of the person.”
Also in the works is a move toward supported decision-making for those with a developmental disability instead of having a guardian make decisions for them.
“We need to stop thinking about people with a developmental disability as being incapable of making decisions,” Bishop said. “What we do in the disability rights community is not control everything, but inform and empower the person who is in control on how things are done. That’s so in line with the values of social work.”
Primm used her bachelor’s degree in psychology to work in a youth residential facility, an inpatient mental health facility and on teen pregnancy prevention, learning that a social work degree would allow more macro-level work.
After earning her MSW, Primm worked as a public policy director with a legal services organization. That got her into social work and the law, where she became “a big believer in social workers and attorneys putting their skills together.”
Primm said social justice work requires a multifaceted approach that includes information and referral, education, teaching self-advocacy, public policy work, advocating for an individual and providing litigation.
“When you look at rights issues, it takes every one of those things to have an impact,” she said.
Primm said several cases arose where a person who was deaf or hard of hearing was not provided with an interpreter at a hospital.
“We deal with cases one by one,” she said. “Sometimes you fix it; sometimes you have to sue. Sometimes multiple facilities do this, and the hope is always that we will get policy changes so a network of facilities does the right thing both legally and morally.”
Primm said the biggest challenge, though, is funding.
“We could serve 10 times more people now if we had the resources for the staff, but the reality is we have to be more reactive instead of proactive,” she said. “There are lots of areas to address, so we bite off small chunks.”
Developmental and Intellectual Disabilities
Aesha Johns began working with individuals with developmental disabilities in India, where she was program manager at a school.
“After I moved to the U.S., I always wanted to get more special training to continue working with children and families,” she said. “That was my entire practice experience. It seemed like a great time to get more education, so I earned a Ph.D. After that, the pretty logical choice was higher education.”
Johns is an assistant professor of social work at Texas Christian University in Fort Worth, Texas, and her current research is on developmental and intellectual disabilities.
When she first transitioned from school to being on the job, she learned a lot of things.
“In school you learn about things as if they exist in isolation,” Johns said. “What you’re doing in practice is working at all levels. It’s important to work with children and families and all the resources in the community. There’s on-the-job learning as well. You have to have training to work with a child with disabilities.”
Based on her practice and current research, she believes individuals with disabilities and their families have a higher risk for physical and mental stress.
“For those families, caregiving is lifelong,” Johns said. “It’s not like the child grows up and leaves home. The families continue to be responsible. On the positive side, families over time adapt and see the benefits of having a child with disabilities. They have the opportunity to continue caring for their child.”
The most traditional treatment for the child is behavioral therapy, but their families also need family therapy and counseling, she said.
“The individual with an intellectual disability grows up and becomes an adult, and that has its own stressors, so the family continues to have a need for services,” Johns said.
There are policy changes for this population she would like to see.
“I think it would be really helpful to have an integrated approach so a family can just go to one place,” Johns said. “Many times you see a family running from one service to another. And it’s so hard to access resources.”
If education policy began when the person is around 4 years old, Johns believes it could be more effectively implemented “so children can actually be successful in public schools and not just get an IEP” (individualized education program), she said.
When she asks her students how many want to work with those with intellectual and developmental disabilities, very few say yes, Johns said.
“If they do end up there, there are some challenges for them, like a really high caseload,” she said. ”It’s sort of unfortunate, but I think parents and families have difficulty getting help or just having someone to listen to them. For me, it is very rewarding to be that person.”
As a Syracuse University School of Social Work professor, Nancy R. Mudrick specializes in social welfare policy, program evaluation and disability policy in the areas of civil rights, health and employment.
“Some of my early research opportunities and collaborations took me directly to disabilities and civil rights policy,” she said. “I found an area I feel passionate about.”
Mudrick also has been working as a partner and subcontractor with the Disability Rights Education & Defense Fund of Berkeley, Calif., since 1998.
“The focus is very much on disability civil rights,” she said. “My work with them has really fed my passion.”
Overall, her program evaluation projects include looking at one piece of the Individuals with Disabilities Education Act—that children with disabilities have the right to a public education in the least restrictive environment—to evaluate “how the federal government is making sure what is supposed to happen is happening,” Mudrick said.
Other projects have included looking at people with disabilities in the areas of employment discrimination, access to health care and the state of health care for people with disabilities.
The health care projects focused on “figuring out where are the barriers to health care for people with disabilities,” Mudrick said.
Doctors’ offices, clinics and hospitals were assessed on their physical aspects and “programmatic access,” she said.
For example, she said, if a person needs a longer appointment time because they need more time to undress because of their disability, is that happening? Or if a person who is deaf comes to an appointment, is a deaf interpreter there and ready?
Challenges in policy research include funding, gaining access to data, and the structure and quality of the data, because it is not written for research purposes, she said.
“I get an enormous satisfaction that the findings of the research gets used for social advocacy,” Mudrick said. “I feel I play an important role in advancing policy, and I find that very satisfying.”
Although she said a small percentage of social work students are interested in policy, “once they’re out working, they begin to understand the impact of policy. As practitioners, they need to know that policy affects practice, and they need to be policy advocates as well.”
Working with the Deaf
Ask Audrey Frank about policies that affect deaf people and she might tell the story of a deaf woman who took along her deaf husband and their 5-year-old hearing child when she went to see a doctor.
“The doctor had to tell the 5-year-old to tell mom she needed a mastectomy,” Frank said.
Although the ADA requires accessibility to health care for people with disabilities, some hospitals, doctors, rehabilitation facilities and agencies do not have sign language interpreters. Some require a two-week wait to bring one in, and poor communication between a doctor and a deaf patient can easily lead to misdiagnosis, Frank said.
“They don’t comply with the law,” she said. “There are lots of horror stories out there. That’s the reality.”
Frank, an assistant professor of social work at Gallaudet University, has worked in the field for more than 30 years.
She had a private practice for 14 years and has worked in schools and mental health agencies, specializing in couples and families.
“I like the dynamics, how they work together to communicate, compromise and find understanding,” she said. ”I am deaf myself. I grew up working with people and loved it.”
Those who are deaf face a variety of problems, Frank said. The most common is fear of oppression by the hearing community in general. There can also be low self-esteem and identity questions.
She aims to increase her students’ knowledge so they can provide appropriate diagnoses.
Many deaf people were never asked how they feel, what they wanted or what their goal is while growing up, Frank said, so clinicians should try to empower them, increase their self-esteem and show them they’re capable of making their own decisions.
“I tell my students ‘FFF: Focus on feelings first,’“she said. “A lot of times, deaf clients are not able to express their feelings. They don’t realize it’s OK to have those feelings.”
One of the courses Frank teaches is on deaf women experiencing depression. Her goal is to increase knowledge about deaf needs, deaf women and deaf rights.
“I think a lot of them are misdiagnosed,” Frank said. “One deaf woman said she feels like she’s in a zoo when she’s in the hospital. She has no idea what’s going on. She said ‘The doctor is talking. Everyone is talking, but nobody is looking at me.’”
There are two new policies Frank would like to see implemented. First, that all therapists are able to communicate in sign language and are aware of deaf culture and norms.
“That would drastically decrease misdiagnoses,” she said. “Many, many, many, many, many deaf people are given misdiagnoses.”
Second, “I wish hospitals—and all medical professions—have a person familiar with deaf needs, deaf culture and deaf lives,” Frank said. “It’s improving, but we still have a long way to go.”
Disability Rights Movement
“There is a reason we are in the midst of a disability civil rights movement,” said Elspeth M. Slayter, associate professor at Salem State University in Salem, Mass.
“People with disabilities involved in either the child welfare system or in substance use disorder treatment suffer from a general lack of respect,” she said. “I have often seen people with disabilities being treated as less than, or not smart enough. I believe we need to foster self-determination and community inclusion for all people with disabilities. I also believe that we just need to see people with disabilities as regular people, just with disabilities.”
Slayter, who is also certified in social work field instruction, knows firsthand how disability can impact a family.
“My sister has an intellectual disability,” she said. “Things were hard for our family while I was growing up.”
Slayter said social workers were “a big part of our life and helped our family tremendously in coping with the challenges involved in caring for and supporting my sister.”
Slayter looked up to these social workers and said she “knew from a young age that I wanted to be in a helping profession.”
After college she was facilitator of a women’s collective involving community organizing and peer counseling.
“It was an easy next step to apply to an MSW program,” Slayter said. “I got into forensic social work by accident, actually. My second year MSW placement was switched with another student by mistake.”
She partnered with law students to co-represent parents charged with abuse and/or neglect in the child welfare system. She worked with the Juvenile Rights Division of the Legal Aid Society in Brooklyn, N.Y., partnering with attorneys who represented children on child welfare cases — many of whom had disabilities.
“Some of my clients also had parents with disabilities, and I began to notice disparities in how people with disabilities fared in the child welfare system,” Slayter said.
She moved to a Bronx public defender’s office where ”one case involved a person with an intellectual disability who had trouble accessing addiction treatment, and I began to specialize in support for that population,” Slayter said.
She received a scholarship from the National Institute on Alcoholism and Alcohol Abuse at Brandeis University’s Heller School for Social Policy and Management.
“Once I started teaching as an adjunct, I knew I had found the profession that really fit me the best: teaching combined with research in service to the community,” Slayter said.
Social workers generally have two challenges when working with those who have developmental or intellectual disabilities: they need to “gain some disability competence and learn to see the person beyond the disability,” she said.
“Access—beyond just physical access—is a major issue,” Slayter said. “So often there are visual barriers, hearing barriers, cognitive barriers, website barriers and, most importantly, attitudinal barriers often related to stigma.”
She advises her students to do three things: become reflexive practitioners, look at themselves regularly on “how their world view is impacting their work;” be critical consumers of research and evaluation evidence to better inform practice; and recognize that policy is relevant to their practice “because they are what Michael Lipsky refers to as ‘street level bureaucrats,’ the true people who implement policy.”
Bishop, of the National Disability Rights Network in Washington, D.C., remembers a woman who started doing volunteer work in her office.
“She was living in a nursing home at that time, and she was looking for a way out,” Bishop said. “We had a real conversation, then worked with her and she was able to transition to her own apartment.”
“It changed her whole life. It was one of those moments when you realize the work you do can change a life.”
For more information, visit the National Disabilities Rights Network