Caring for patients with disabilities

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Individuals with intellectual and developmental disabilities or autism (IDD/A), particularly those who have communication barriers, mobility issues, or severe mental or behavioral challenges, experience significant disparities in health outcomes. They experience higher rates of health problems and have more complex medical needs compared to the general population, but they are also more likely to experience difficulties in accessing healthcare. They have a harder time finding providers, undergo fewer routine screenings, experience longer delays in diagnosis, and have poorer outcomes.1 People in this population are more likely to use the emergency room inappropriately and report higher stress and anxiety associated with healthcare.1

Barriers to better care

There are a multitude of barriers to healthcare for this population:

Lack of training among healthcare providers. Healthcare providers across all disciplines receive little or no training on how to provide care to individuals with intellectual disabilities. In a survey of medical oncology physicians and nurse practitioners, for example, 93.9% of respondents noted receiving five or fewer hours of specific training or education regarding caring for populations with IDD/A.1As a result, many providers report feeling unprepared or uncomfortable working with patients.

Communication barriers. People with intellectual disabilities may have difficulty communicating their symptoms or understanding medical information, which can lead to misdiagnosis or inadequate treatment.

Stigma and discrimination. People with intellectual disabilities may face stigma and discrimination from healthcare providers, which can lead to a reluctance to seek care or to receive adequate treatment. Studies suggest that many providers have low expectations for the quality of life for people with IDD.2

Structural barriers. Offices and equipment may be inaccessible. People with intellectual disabilities may face transportation issues or financial limitations.Office visits can be difficult to fit into a standard schedule, as patients often need more time. Payment and reimbursement issues disincentivize many providers from taking on the challenges of caring for such complex patients.

Strategies for your office

When patients with IDD/A can’t find primary care services, they may turn to emergency departments instead, further stressing these already overwhelmed resources. There, they may face the same barriers, stigmas, and lack of care.

With some basic knowledge, you can be better prepared to care for these patients in the right setting at the right time.

See the person. A person’s disability is just one part of them. Every person’s identity is informed by factors such as race, ethnicity, sexual orientation, and gender identity. Each patient you see is an individual, with his or her own interests, likes and dislikes, skills, and abilities. Avoid the tendency to falsely attribute a patient’s concerns to their disability: People with disabilities experience the same common health conditions as everyone else.

Consider sensory issues. Many people with IDD/A are sensitive to sensory stimuli. Bright lights, loud noises, and strong smells can all trigger discomfort and behavioral issues. Ask your patients or, if needed, their caregivers, about preferences for lighting, noise, and touch to help create a more comfortable environment. I recommend seeing patients with IDD/A first thing in the morning or as the last visit of the day so they’re not in a crowded, busy waiting room.

Take your time. The additional challenges you may face in the exam room could require a longer time than you’re accustomed to. People may need more time for the visit due to communication difficulties, cognitive limitations, or anxiety. I routinely schedule patients for 20-minute appointments, but I often spend up to an hour talking to them and their caregivers.

Communicate clearly. This is the most important predictor of good outcomes. Talk to the patient, not over the patient. Avoid jargon. Use clear, simple language and visual aids, such as pictures or diagrams, to help explain medical concepts. Try different tools. A patient may not be able to comprehend a numerical pain scale, but a face scale may be better. Some patients may need to use sign language, picture boards, or electronic devices to communicate.

Explain what you are going to do before you do it, and ask patients before touching their equipment, such as a wheelchair, assistive communication device, or crutches.

Don’t force. Some procedures are particularly difficult for patients to handle. They may not like the feel of the blood pressure cuff or may not consent to a digital rectal exam or pap smear. If a patient refuses a procedure, don’t force them to do it. Be sure to document their refusal in the chart. Don’t use their disability as the reason. Note the patient’s behaviors instead.

Involve caregivers. Caregivers can provide valuable information about the patient's medical history, symptoms, and behavior. Encourage caregivers to participate in the visit and share their insights, but don’t exclude the patient. In a series of interviews, most physicians reported that they don’t directly engage the patient with intellectual disability directly,3 even though many people with I/DDA can express their wishes if they have support and accommodations.

When possible, try to spend a little time with the patient without a caregiver present to screen for abuse (verbal, financial, physical,or sexual) or other concerns.3

Collaborate with other team members. Many people with IDD/A face fragmented care. Health teams that work together can improve outcomes. The Patient’s Medical Home model, for example, provides coordinated and comprehensive care that meets the majority of an individual’s physical and mental health care needs. It improves care coordination, reduces disruptive emergency room visits, and increases access to more advanced medical services.

Be aware of nonverbal cues. A provider who uses a stressed tone of voice or has tense body language can set the tone of the exam. Also be aware of the patient’s nonverbal cues. People with limited communication may show signs of pain and distress differently from other patients. They may appear withdrawn or unresponsive, or they may act out. Use adapted tools such as the Chronic Pain Scale for Nonverbal Adults with Intellectual Disabilitiesor the Non-Communicating Adult Pain Checklist.4

Provide the same services as all patients receive. People with disabilities need the same wellness services as your other patients, including age-appropriate screenings, health education, family planning, and end-of-life care.

Familiarize yourself with laws. Make sure you meet the requirements of the Americans with Disabilities Act, Rehabilitation Act, Civil Rights Act of 1964, and Social Security Act.

Consider the social determinants of health. Neither wellness nor illness occur in a vacuum. A person’s health is affected by a wide variety of factors, such as socioeconomic status, access to support systems, and insurance coverage. Not considering these factors can set a patient up to fail.

Stephen J. Kolesk, MD, is Vice President for Medical Affairs and Managed Care/Chief Medical Officer, at Woods Services, Langhorne, Pa. Dr. Kolesk, a N.J. family physician for two decades, who later had a distinguished career as a hospital administrator with Virtua Memorial Hospital and Virtua Health in Marlton, N.J., oversees Woods’ population health management strategy, which includes the integration of primary and specialty care with behavioral health. Under his leadership, the Medical Center at Woods became an NCQA-certified patient-centered medical home. In addition, Dr. Kolesk guides the launch and expansion of Woods’ primary care centers in N.J. in partnership with Woods’ affiliate, Legacy Treatment Services, as well as collaborations with N.J. hospitals and medical centers for the provision of medical services to people with IDD and patients with behavioral challenges.

References

1. Bhatia AK, Fossi A, Goodspeed BL, et al. The conception of an Oncology Neurodiversity Work Group to address cancer disparity for individuals with autism and intellectual or developmental disability (IDD) at the Sidney Kimmel Cancer Center. American Association of Cancer Research Annual Conference. Session LBPO.PS01. Late-breaking research: Population sciences. April 14-19, 2023. Orlando, Fl. Accessed on May 22, 2023 at https://www.abstractsonline.com/pp8/#!/10828/presentation/10021.
2. Centers for Disease Control and Prevention. CDC Public Health Grand Rounds. Addressing gaps in health care for individuals with intellectual disabilities. Accessed on May 22, 2023 at https://www.cdc.gov/grand-rounds/pp/2019/20191015-intellectual-disabilities-H.pdf.
3. Agaraonnik N, Campbell EG, Ressalam J, Iezzoni LI. Communicating with Patients with Disability: Perspectives of Practicing Physicians. Journal of Geriatric Internal Medicine. 2019;34:1139–1145. Accessed on May 22, 2023 at https://link.springer.com/article/10.1007/s11606-019-04911-0.
4. Sullivan WF. Primary care of adults with intellectual and developmental disabilities 2018 Canadian consensus guidelines. Can Fam Physician. 2018;64(4):254-279/