Caring for Developmentally Disabled Patients


By Debra Wood, RN, contributor

Millions of children are born with developmental disabilities and, with modern medical advances, are living long into adulthood. They face many of the same diseases as the general population, as well as comorbidities related to their condition.

“There are some unique challenges to caring for people with developmental disabilities, but the skills you need to deal with that patient population are skills nurses have and have developed for other patients,” said Dawn Lee Garzon, PhD, CPNP- PC, PNP-BC, PMHS, FAANP, teaching professor and pediatric nurse practitioner emphasis area coordinator at the University of Missouri-St. Louis, College of Nursing.

However, patients with disabilities do not always receive the best care. A recent study from the United Kingdom found that hospitals in that country struggle to meet learning-disabled patients’ needs. Often treatments were delayed or omitted due to staff’s lack of understanding that such omissions presented a safety risk.

Nurses working with this population in the United States said the problem is not unique to the UK. Kathleen Brown, RN, BA, CDDN, president of the Developmental Disabilities Nurses Association and director of development for Pharmacy Alternatives, in Louisville, Ky., reported patients have waited 12 or more hours in the emergency room, sitting in their own waste, with nurses not knowing how to approach the patient.

“Some of it is not understanding everything about the person, and some of it is fear,” Brown said.

The number of people with developmental disabilities is increasing, in large part because medicine is able to save more babies, and many are more disabled than in years past, perhaps nonverbal and nonmobile, Brown explained.

Advances in healthcare also are allowing these children become adults.

“This is a population that did not always have good longevity,” said Laura M. Robinson, MPH, an associate at the University of Rochester (New York) Medical Center School of Medicine and Dentistry. “They are living, in most cases, as long as the general population.”

HealthyPeople 2020 reports that people with disabilities are more likely to experience difficulties or delays in getting health care, to not have had a Pap smear within three years or a mammogram within two years, to be overweight or obese, to not engage in fitness activities and to use tobacco.

“The best thing we can do is treat this population like the general population, and that includes getting all preventive care,” Robinson said. Nurses can take the lead in teaching patients with disabilities, their caregivers and physicians about the importance of healthy habits and screenings for this population.

Sara Weir, vice president of advocacy and affiliate relations at the National Down Syndrome Society in New York, emphasized that people with Down syndrome often have co-morbid conditions and should be screened and monitored for leukemia, thyroid function, eye disorders, cardiac conditions, sleep apnea and early-onset dementia. Physical conditions, such as sleep apnea, can lead to fatigue and behavioral problems.

The spectrum of developmental disability includes a wide range of conditions, with or without cognitive impairments.

“It’s scary to nurses because they do not know what the term means, because it means different things in different people,” Garzon said.

Nurses should begin with an assessment of the individual patient’s abilities and needs and then make a plan to address those issues, Garzon recommended. A complete assessment, medication and health history may require talking with a caregiver or family member.

“To facilitate a better hospital stay, the hospital can get a communication history from the primary caregiver,” said Wendy Herbers, RN, CDDN, MHP, director of nursing at Capstone and Tandem Residential Services in St. Paul, Minn., and vice president of the Developmental Disabilities Nurses Association. Preferred communication methods may include sign language or a picture board, so nurses can use the same tool used at home while the patient is in the hospital.

Initially nurses may not always understand how to communicate with someone with a developmental disability, Herbers said, but with some accommodations and patience, they can be successful in getting the information needed to provide proper care.

These patients often will have difficulty expressing how they are feeling. They may not be able to say they have a headache or are having an aura preceding a seizure. They also may not communicate that someone has abused them, but caregivers should remain alert for any signs that the person may have issues related to abuse.

“Using the guardian or parent to facilitate communication between the individual and provider can be helpful,” Weir said.

Professional caregivers also should keep in mind conditions common to some patients with disabilities and to plan care accordingly, Garzon said. For instance, inactive people with developmental disabilities often suffer from constipation, which can complicate a post-op recovery, she explained. Some patients may receive medications that increase their risk of heart disease.

Respiratory problems, particularly in patients who had been institutionalized and allowed to smoke, is a growing concern, Herbers said. Also, many people with developmental disabilities are overweight and prone to developing diabetes.

Medications also may act differently in a person with a developmental disability, Herbers said. Additionally, reactions to pain may be different than a patient without a disability, because prior caregivers ignored complaints and the individual learned to live with it. She encouraged caregivers to offer patients medications for pain as ordered.

Robinson added that some patients with developmental disabilities have been inappropriately touched or fear being touched. She suggested nurses take the time to get comfortable in the exam room or during a test, and allowing the patient a choice to perhaps have someone else in the room with them.

When patients are ready for discharge, Herbers recommended the hospital nurse coordinate with the primary caregiver.

The primary caregiver may be a parent or family member or staff at a group home, Weir added. Good communication and coordination with a caregiver can be considered an accommodation, not unlike ramps for a wheelchair or braille information for a blind person.

“We believe in holistic care,” Weir said. “First and foremost for providers is to realize that people with Down Syndrome are just like everyone else. Treat them like a normal patient is the best thing we can do and make accommodations throughout their care.”

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The Developmental Disabilities Nurses Association welcomes opportunities to present training programs to nursing organizations and hospitals. 

The National Down Syndrome Society offers links to health care guidelines on its website.

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