People with Intellectual Disabilities have the Same Right to Health as Everyone Else

This piece was originally published in Spanish on Gente Saludable (Healthy People), the blog of the Inter-American Development Bank that focuses on health in Latin America and the Caribbean, as part of its celebration of the United Nation’s International Day of Persons with Disability.

Angie was born in Peru and has an intellectual disability (ID). When she was 10 years old, she developed open sores on her feet, as well as swelling of her legs and face. She sought medical attention in her village, but the healthcare workers turned her away, dismissing her symptoms as being caused by her disability.

People with ID, like Angie, face physical and social barriers to accessing health services, which contribute to worsening the existing health disparities and the disease burden faced by this population.

In Chile, for example, 80% of adults with a disability reported having at least 3 illnesses or diseases, while less than 30% of the population without disabilities reported this disease burden. Similarly, the experiences of frustration when searching for a specialist, having to wait a long time to be seen by a doctor, and receiving unclear or confusing follow-up instructions are not just inconveniences for people with ID. While the situations may be routine for all patients, they can effectively lock a person with ID out of the healthcare system. Furthermore, people with disabilities often experience mistreatment by health personnel. While we know this happens all over the world, the lack of data about the health situation of people with ID makes it difficult to have a better understanding of the challenges that they face.

The Urgency of Achieving Inclusive Health

Angie traveled for 11 hours with her father until they arrived in Cuzco, where Angie could receive a free medical examination at a Special Olympics Healthy Athletes MedFest event. While Angie was in line, Special Olympics Peru volunteers noticed that she was weak and could hardly stay standing. When they spoke to her, they learned she had stopped eating and urinating. Upon examining her, they discovered what appeared to be a spider bite on her leg that had become infected and swollen. Special Olympics Peru volunteers helped ensure Angie would be seen urgently at the local public hospital. Once she arrived, she was diagnosed with acute kidney failure caused by the infected spider bite: had the medical personnel in her village treated her with the same respect they would any other patient, instead of dismissing her because of her disability, they would have reached this same conclusion. Fortunately, Angie immediately received dialysis that saved her life.

As Angie’s case shows, knowledge and sensitivity training of healthcare personnel is critical for people with disabilities in order for them to receive quality care. In many countries, there are limited opportunities to specialize in fields which principally serve people with disabilities; however, general medical programs don’t include theoretical or practical training relevant to their needs. As a result, healthcare staff may not feel adequately equipped to treat people with disabilities.

Furthermore, training on substantive medical concepts must be accompanied by training on sensitivity and other best practices for serving patients with disabilities, and should include a discussion of the multiple barriers that a patient likely had to face and overcome to even reach a health professional. The doctors who treated Angie at the public hospital were more open than those in her village, and their medical competence saved her life. But in their eyes, Angie was a girl who came to them as sick as she was because her family hadn’t cared for her properly. Interpreting the situation as one of child abuse or neglect, they involved government authorities, who separated Angie from her family. This result could have been avoided had there been a broader understanding of the barriers that people with disabilities face: the doctors didn’t understand that a family can, like Angie’s did, make countless efforts to ensure their family members receive care, but they cannot single-handedly change attitudes, knock down barriers, and open hearts and minds and doors.

Quality Healthcare — and Health — as a Reality

Data collected from Special Olympics health screenings in Latin America over the past decade found that:

· 35.5% of individuals with ID had a blocked or partially blocked ear canal, which can cause temporary hearing loss

· 40.1% needed new prescription eyewear

· 35.2% of children and 48.3% of adults were overweight or obese

· 58.9% had a skin or nail condition

· 63.1% had untreated tooth decay.

Clinically speaking, these are conditions with proven prevention practices, uncomplicated diagnostic protocols, and fairly straightforward treatment. But the care cycle for a person with disabilities can’t begin if he or she cannot access health systems and services in the first place.

While Special Olympics has contributed to improving this situation through our health programming, we cannot solve the problem alone. This responsibility falls on governments and their health systems. But even though all countries in Latin America and the Caribbean have ratified the Convention on the Rights of Persons with Disabilities (CRPD) and committed to ensuring the human rights of people with disabilities, the reality is that considerable disparities remain.

Governments have at their reach various strategies for improving access, such as:

1. Integrating into formal medical education curricula at all levels, including continuing education for practicing professionals, medical knowledge and sensitivity skills training for serving patients with ID.

2. Ensuring that the staff of public health facilities, from the security and administrative staff to the medical providers, are trained on how to address the needs and barriers that this population faces.

3. Taking and pushing for initiatives at the policymaking level: for example, through the development of protocols and frameworks for healthcare provision that recognize disability as an element of diversity and not a signifier of deficiency.

These changes would be life-changing for Angie, who is just one of over 14 million people with intellectual disabilities in Latin America and the Caribbean, a region that over 66 million people with any kind of disability call home, and would help ensure that people with disabilities have access to quality healthcare as is their right.