About

Honoring Our Founder: Karen Green McGowan (1941-2025)

Karen Green McGowan’s name is widely known and revered in the field of intellectual and developmental disabilities (IDD), as is her tenacious spirit. Her boldness helped usher in a new era for supporters of people with IDD. Her conviction to acknowledge and honor the person at the center of every human helped overturn misconceptions and transform failing systems. Her life’s work was more than a career – it was a calling, one that she may have never discovered if not for a practical choice she made about her daily commute.

From a young age, Karen knew she wanted to be a nurse, though specializing in IDD had never crossed her mind. A dedicated student, she excelled in school, graduating at the top of her class. She often joked that she didn’t date in school because boys were intimidated by how smart she was. “At least, that’s what I hope it was,” she said with a laugh in an interview.

After completing nursing school in 1962, Karen began her career in labor and delivery at Malmstrom Air Force Base in Montana. She helped deliver hundreds of babies there before marrying and moving back to her home state of Iowa with her husband in 1965. Practical as ever, Karen limited her job search to roles that were close to home. She refused to work at any location that required her to commute on dangerous highways. Due to its proximity, Karen accepted a nursing position at Glenwood State Hospital School in Glenwood, Iowa – an institution for people with severe intellectual disabilities.

Karen was tasked with overseeing care for a large portion of Glenwood’s population. The grim conditions – neglect, overcrowding, and shockingly high mortality rates – surprised and disturbed her.

Mentors cautioned her against taking the job, warning that it could “ruin her career.” Their concerns reflected the stark reality of the time. People with disabilities were often devalued, and the field was seen as a professional dead end.

What Karen encountered at Glenwood became her personal mission. Warnings from her mentors only solidified her resolve to make a difference. She didn’t know it at the time, but her decision to lean into the challenge before her would set the trajectory of her career, and the field of IDD, on an entirely new path.

Recognizing the need for better education and training in the field, Karen became deeply invested in equipping others with the knowledge to provide quality care. “I love training people. I love watching what happens when a person gets it,” she shared. She authored numerous training manuals for clinicians on the physical and nutritional management of people with disabilities, filling a critical gap in available resources.

In 1977, driven by her passion for education, she took the bold step of becoming an independent clinical nurse consultant. Though the decision was daunting, she embraced the challenge. “At some point in my career, I decided if something didn’t scare me at least a little, it wasn’t worth doing,” she said.

As a consultant, Karen provided technical assistance to more than 40 states and nine Canadian provinces. She advised facilities on improving care standards and helped them avoid Department of Justice violations. Her expertise extended globally when she began consulting for Disability Rights International, assessing care conditions in Romania, Serbia, the Republic of Georgia, Mexico, and Ukraine.

“I was the first million-miler on my airline,” she noted. “I probably took about 500 flights throughout my lifetime.” It was an ironic twist for someone who had once chosen a job close to home to avoid a long daily commute, only to find herself traveling the world for her life’s work.

In 1992, while consulting on the transition of 240 people from institutions to community settings, Karen was asked to develop a way to determine which of them required specialized care. She assembled a team of innovative nurses to create an effective solution using key health indicators such as eating ability and mobility. The result was the Health Risk Screening Tool (HRST), a 22-item screening tool that evaluates risks in critical areas. Now an industry leader, the HRST has transformed how health risks are identified and managed, ensuring people with IDD receive the care and support they need to thrive.

As demand for the HRST and educational resources grew, Karen founded IntellectAbility, formerly known as Health Risk Screening, Inc., an organization dedicated to equipping supporters, clinicians, and administrators with tools and training to improve health outcomes for people with disabilities. Central to the organization’s approach was Karen’s commitment to Person-Centered Planning and Person-Centered Thinking, which emphasize the importance of tailoring support to each person’s unique needs, preferences, and aspirations.

Karen believed that people with disabilities should have autonomy, and she worked to ensure that their care and support were driven by their preferences and goals. Through her efforts at IntellectAbility, she helped develop and implement training that enabled supporters to recognize and address often missed health risks, while prioritizing what is important to and what is important for the person. This focus on Person-Centered practices has transformed support models, ensuring that people remain at the heart of every decision affecting their lives.

In line with her commitment to reducing risk, Karen played a key role in popularizing the term Fatal Five – a phrase used to highlight the most common preventable causes of death among people with IDD. Building on the previously recognized Fatal Four, she added sepsis and later gastroesophageal reflux disease (GERD) to the original list, which included aspiration, constipation, dehydration, and seizures. By equipping supporters with critical knowledge to recognize and respond to these risks, Karen helped establish terminology and awareness that continue to shape best practices in the IDD field today.

As the years passed, Karen never truly “retired.” In 2015, she assumed the presidency of the Developmental Disabilities Nurses Association (DDNA), a national nonprofit dedicated to advocacy, education, and support for nurses serving people with developmental disabilities. She also played a key role in developing curriculum and e-learning courses for IntellectAbility, further expanding access to the knowledge and tools she had worked so hard to create. When asked what kept her passionate about this work after so many years, Karen put it simply: “We have to make sure we keep people at the center of planning in order to understand what they really need. And mostly, what people really need is to be regarded as a human being who has feelings and people who love them.”

Retracing the milestones of Karen’s career underscores the significant strides made in healthcare and society for people with disabilities. While she would insist that there’s still much work to be done – and indeed, there is – her impact is undeniable. Thanks to Karen’s passion for educating others, her brilliance will live on forever in the resources she created, the people she mentored, and the lives she touched. To honor Karen’s legacy, we invite you to approach others as she did: with patience, curiosity, kindness, and a generous acknowledgment of the person at the center of every human being.