STEPS for Those With Intellectual Disability

Nurse researcher studying program to build social skills

Sarah Ailey PhD, APHN, is a passionate and dogged advocate for people with disabilities, especially those with intellectual disabilities, or ID. She’s conducting a four-year study of a problem-solving program for people with ID that could help make this vulnerable group healthier, happier and safer in their homes and at their jobs.

A professor in the Rush University College of Nursing’s Department of Community, Systems and Mental Health Nursing, Ailey brings personal insight to this work: One of her own children, now an adult, has intellectual disabilities. She also has an uncommon focus on mental health issues in people with ID, who make up between 1 to 3 percent of the population of the United States.

By no means do all of them have mental health diagnoses, but Ailey says 40 to 60 percent have behavioral health issues such as problems with anger management and impulse control. “It can be very traumatic for them, and for the people they live with” when they lash out, she says.

Aggressive or destructive behaviors can send people with ID to hospital emergency departments, where they may be admitted for injuries or psychiatric evaluation, or treated with psychotropic drugs. As many as 60 to 80 percent of the nearly 400,000 people with ID in the U.S. who live in small group homes receive psychiatric drugs, some inappropriately, Ailey says. They even may be arrested for aggressive behavior.

Learning to solve problems before they escalate

What if, rather than reacting emotionally to everyday conflicts, people with intellectual disabilities were able to use problem-solving skills they’d learned in the context of their own homes? Ailey believe this approach could save untold heartache, and money, for these individuals, their families, caregivers, housemates and co-workers, and for society as a whole.

With that goal in mind, she is studying a program for people with intellectual disabilities that develops their skills in responding to social problems. Ailey devised this intervention by adapting a program developed by Arthur Nezu PhD, and Christine Nezu, PhD, both psychology professors at Drexel University in Philadelphia, and Thomas D’Zurilla PhD, psychology professor emeritus at Stony Brook University, Stony Brook, New York.

Arhutr Nezu is consulting with Ailey on adapting the program, which is grounded in cognitive behavioral therapy and previously has been used to teach problem-solving skills with people with ID in clinical or forensic settings. It also has been used with the general population in a variety of settings.  In a testament to her dedication to this effort, Ailey has spent a decade pursuing grant funds to support a full scientific trial of the program’s efficacy in a community-based residential setting. 

Taking STEPS into group homes

Her Steps to Effective Problem-Solving (STEPS) program uses games to create a team atmosphere, followed by presentations, discussions and practice. These activities aim to get participants to be positive about dealing with problems; to define the problem, determine their goals in problem-solving and what barriers they face; to think and talk about different ways to deal with problems and handle their stressors and feelings; to predict what will happen with different solutions, try out those solutions, and assess how well they work; and to incorporate the keepers into their set of life skills.

Ailey and her colleagues have come to recognize that staff members in residential group homes for people with ID – who often are often low-wage workers with little or no training in managing conflict – may benefit from some problem-solving skills instruction themselves. Previous research has shown an increase in problem-solving capabilities and decreased aggressive behaviors among residents when staff members accompanied them to problem-solving training, but staff had not been systematically involved in the training.

In a STEPS pilot study in two homes, staff members’ problem-solving skills improved along with the residents’. The Rush University College of Nursing Research Fund underwrote the study, which Ailey conducted in 2011.

STEPS study now is recruiting participants

Given these results, Ailey’s program approaches the group almost as a family. Staff members are involved in the training, and the group environment is used to model and to reinforce beneficial behaviors for all, always recognizing that the staff is responsible for supervising the home.

“Staff will receive additional materials, such as an activity to do with the group during dinner,” Ailey says. A control group will receive a nutrition intervention instead of the STEPS program, and at the end of the study Ailey will compare pre and post social problem-solving skills and numbers and severity of behavior incidents in each group and between the groups .  

Ailey currently is recruiting participants in the four-year study, which will involve conducting nine rounds of STEPS, each in four homes of up to eight unrelated men or women — 36 homes in all between now and 2020. She hopes to show that STEPS helps reduce aggressive behaviors in a cost-effective manner, and to assess the role the staff plays in the group dynamic. If she can show STEPS works, it could be put in place in existing group homes for people ID, and could go a long way toward making life easier for them, and for the people who care for them.

“We’re never going to totally get rid of these behaviors,” Ailey says, “but my hope is that we can reduce behaviors that lead to third-party involvement” — the third parties typically being police or an ambulance crew.

A PATH to better care for people with disabilities

Residential settings are only one area of Ailey’s work that touches on the health of people with intellectual and other disabilities. Another is acute care — what happens when people with disabilities go to the hospital.

Among people with autism and/or ID who are admitted to hospitals, 1.2 percent spend more than 60 days hospitalized, accounting for 15 percent of days in hospital for that group. These patients tend to be hospitalized for serious conditions; in addition to the aggressive incidents the STEPS program is designed to reduce, seizures and septicemia (sepsis) – bacterial infection of the blood – are leading causes of hospital admissions for people with ID, Ailey says. People who need community-based non-institutional housing after hospitalization also may have difficulties getting placements.  

Chronic disease is also common. Ailey suggests establishing programs to help people with disabilities make healthier choices at home to avoid obesity and the diseases it can cause or aggravate, such as diabetes, and to prevent falls and other accidents. She also advocates for training hospital staff to better care for this population when they do need acute care.

Responding to these concerns, Ailey was a lead organizer of the Partnering to Transform Healthcare with People with Disabilities (PATH-PWD) Conference held at Rush in March. PATH-PWD was a nationally invited conference attended by about 150 invited health care professionals, researchers, policy makers, self-advocates with disabilities, and insurance and medical equipment and technology professionals.

They developed action plans and research and policy agendas to improve health promotion and primary, acute and transitional health care for people with disabilities. The conference was funded by an R13 Conference grant from the federal Agency for Healthcare Research and Quality and The Special Hope Foundation.

From college dropout to PhD

Ailey grew up in Richmond, Va., with socially liberal parents who both held public office in the early 1960s and supported civil rights legislation in the city of Richmond and in Virginia. As a young adult, she “dropped out of college, did community organizing, got married, had a couple of kids, and then decided I actually had to have a job.”

By that time, Ailey was living in the Chicago area. She attended Triton College in suburban River Grove, earning an associate degree in nursing. From 1991 to 2002 she worked for a home care network that Rush owned at the time. At the same time, she continued her education at the University of Illinois at Chicago, receiving her bachelor’s and master’s degrees, and finally her PhD in nursing in 2002.

Ailey conducted her first work in social problem-solving as a research assistant in a 2001 study of Mexican immigrant women and their young children. Her dissertation was on depression in people with Down Syndrome.

Ailey also teaches, chairs the College of Nursing’s Appointments and Promotion Committee, co-chairs the Adults with Intellectual and Developmental Disabilities Committee at Rush University Medical Center. In addition, she advises several students in the College of Nursing’s Doctor of Nursing Practice (DNP) program.  

“I am grateful for the support of my colleagues in the College of Nursing and across the Medical Center in my efforts to improve health and health care of people with disabilities,” she says. “ I value the vision of the College of Nursing to lead health care transformation, and I’m grateful for the opportunities that a career in academic nursing have given me in pursuing this passion.”