Healthcare disparity and challenges

Previously we examined the differences between the health conditions of those with and without intellectual disability. We noted that the landscape of care is changing. Healthcare professionals, unfamiliar with those with an intellectual disability, will be at the forefront of care delivery. In this video, we are going to look at the challenges that people with an intellectual disability face in health care settings and the contributing factors to this health disparity. We know that the prominent presenting health conditions are different among people with an intellectual disability. However, often conditions can be overlooked and undiagnosed. Sensory impairment is one area that can go unnoticed, especially for those with severe or profound level of intellectual disability.

In one study, by Evenhuis and colleagues, 14.7% of visual impairment, and 22.5% of auditory impairment, were identified as new cases that had failed to be reported or identified during health checks. Although sensory conditions can be associated with ageing, McCarron and colleagues, in the IDS TILDA study, noted that adults with intellectual disability were twice as likely to have visual problems, and at a much younger age, than those in the general population. In another review, Warburg identified that many older people with an intellectual disability, living in community and residential services, did not receive glasses for near vision. A common misconception is that people with an intellectual disability have limited sensory demand, subsequently, little use for glasses.

Comments like, she can’t read, or he doesn’t do much around the house, or he doesn’t like to do near tasks are unhelpful. One has to question, is it that the person lacks the ability, or can’t see? The challenges with visual impairment is that it directly correlates to falls and subsequent fractures. Identifying such impairment, as part of the overall health promotion care package, can prevent unnecessary secondary conditions and harm. Frequently parents or carers report not being listened to. This can result in a poor health experience, and in some cases, tragic and devastating outcomes for those with intellectual disability. There are many reported cases that have resulted in unnecessary death. See the death by indifference report in the see also section.

One such case was that of a young woman with a mild level of intellectual disability who developed an earache. Her mum took her to a GP who prescribed antibiotics for her. However, the pain continued and got worse. Her mum then took her to the emergency department. They had to wait over five hours to be seen, and as time progressed, the pain worsened. The young woman found it difficult to cope with her pain and expressed this by sitting on the floor, rocking, making sounds, and holding her head. When the doctor came the mum tried to explain, but she was dismissed. And the doctor wrote in her chart that the woman was having a temper tantrum.

The young woman and her mum were escorted out of the emergency department by security. She died six hours later in her mum’s arms. At her inquest, the coroner’s report identified that she had died as a result of undiagnosed meningitis. This is a very sad account of failure to respond and assess, making judgement on appearances, and failing to meet the needs of the person with an intellectual disability. Very often, people with an intellectual disability may not be aware of the medical implications of the symptoms they are experiencing, may have difficulty expressing their needs, and are reliant on their carers, who are vital components in the smooth continuity of their care.

If practitioners assume that, because of their disability, people are less able, a situation can occur, whereby, the person with an intellectual disability will be subject to lack of opportunistic screening. Instead of the process adapting to the person, the person is viewed as having to adapt to the process. Clinicians ought to insure all citizens are offered the same standard of care. Several research studies have identified that people with intellectual disability receive suboptimal care, and are often left without treatment. Chan and colleagues examined mammography screening for women with and without disabilities, and found that women with severe level of disabilities were less likely to be screened than their non-disabled peers, 14% versus 44%.

Further in the IDS TILDA study, 67% of postmenopausal women had not had a DEXA scan. Considering that the menopause is a risk factor for osteoporosis, screening is essential to diagnose this silent condition that can have such devastating consequences as fracture. If the person meets the criteria for screening, screening should be adjusted and offered. Another challenge that people with intellectual disability face, is when the built environment is inappropriate to their needs. Often, assumptions are made regarding literacy, and people’s capability to read signs, open doors, reach buttons, or see obstacles. These disparities affect the person’s ability to access clinics, find the way around buildings, or attend their appointments.

Along with this, people with an intellectual disability, especially those with a severe profound level, can present with mobility limitations. People can have difficulty conforming to positioning due to, perhaps, contractures and many people can consequently be excluded from particular assessments based on their physical deformity. Further exclusion can occur as a result of a person’s difficulties in complying with instructions for the assessments. This can restrict the ability of a person to use many diagnostic tools. The person should not have to adjust to the environment, instead, reasonable adjustments should be standard. For example, the inclusion of easy read explanatory material to support health assessments, to help people with intellectual disability understand the process.

We will be talking about this important topic later on in the course. Further barriers include inappropriateness or lack of available health information. Literacy levels are low among those with intellectual disability. However, easy read material is frequently unsuitable or not available. Insufficient time is often assigned to an appointment resulting in a rushed experience and as a result, health needs go unmet. Often GPs are reluctant to engage in health checks of people with an intellectual disability due to unfamiliarity. The poor experience at this one health visit can negatively impact on further and subsequent visits, culminating in reluctance by the person with an intellectual disability to attend and engage in vital health care in the future.

In Ireland, the national guidelines on accessible health and social services advocate for flexibility around hospital appointments for people with intellectual disability in terms of setting the appointment time, minimising the waiting time, and allowing extra time where appropriate. Similarly, the World Health Organisation World Report on Disability makes several recommendations for improving accessibility to services. However, from the experience of people with intellectual disability, this is not always the case. Long term commitment is required by governments and health agencies to ensure strategies are implemented and equity of service provision is realised for people with intellectual disability. Other barriers reported when accessing health services include inaccessible examination tables, waiting rooms or treatment clinics being too small for wheelchair access, inadequate parking, or inaccessible ramps.

The list seems endless. It must be recognised that the built environment still lacks functionality and accessibility despite many regulations. When people do see their doctor, it can be a very intimidating experience for them. People can often experience anxiety, fear, and difficulty in speaking out. In the next video, we will be showing you a short scenario which demonstrates how fear and anxiety can impact on a health assessment.