Access to Health Care

*Note: Resources linked are in English

Worldwide, the utilisation of health care services are higher in persons with disabilities than persons without disabilities. Women with disabilities also seek care more often than others.

According to the World Health Survey in the World Report on Disability, people with disabilities, especially women with disabilities, were significantly more likely than people without disabilities to not receive health care services that they needed due to the multiple barriers they face. With poorer access to health care, persons with disabilities are at higher risks of poorer health – a vicious cycle.

and pdf or webpage format, unless stated otherwise.

Barriers Faced by People with Disabilities in Accessing Health Care Services

People with disabilities in Malaysia continue to face multiple barriers in accessing basic health care services, including:

• High costs of health care services.
• Limited availability of services especially in rural and remote areas.
• Inaccessible physical environments to access health care services, including hospital buildings, medical equipment, bathroom facilities, parking areas, walkways within as well as outside going into health care facilities.
• Lack of professional training for health care practitioners in providing care for persons with disabilities.
• Inadequate understanding of disability and ableist practices in health care workers, such as disregarding the right of people with disabilities to make decisions regarding their health and body, and refusing life-saving treatments to individuals with disabilities.
• Poor access to preventive health services, such as health screening, vaccination and health counselling.
• Inadequate access to information about general health and sexual and reproductive health issues.
• Inaccessible, inconvenient and costly transportation.
• Discrimination and gatekeeping against people with disabilities, such as not prioritising persons with disabilities in lifesaving medical procedures, vaccination and screening programmes, promotion of sexual and reproductive health rights, and mental health programmes.

Removing Barriers to Health Care for People with Disabilities in Malaysia

Health care services for people with disabilities do not end at “it is available to PWDs” – which is the approach currently adopted in Malaysia.

People with disabilities have the right to access quality health care services that improve our quality of life, and a health care provision that is accessible in all aspects, including communication, information, affordability, facilities and infrastructure.

A total transformation of health care services in Malaysia is necessary, not just because the survival, health and quality of life of people with disabilities depend on it, but also because disability-inclusive health care services benefit others: those without disabilities and those with temporary or situational disabilities.

Besides ensuring accessibility in the provision of health care services, other underlying issues that contribute to poorer access to health care in people with disabilities also need to be addressed, such as:

• Poverty
• Education of persons with disabilities
• Employment of persons with disabilities
• Inaccessible public transportation
• Inaccessible and unsafe residential homes
• Limited access to assistive technology and devices
• Discriminative policies against people with disabilities
• Societal stigma and negative attitudes towards PWDs

As women and girls with disabilities face greater risk of poor health outcomes and gender-based violence, a gender-sensitive and trauma-sensitive approach to provision of care is critical to ensure the health outcomes and wellbeing of women and girls with disabilities.

Accessibility in the Provision of Health Care Services

Making health care services accessible to everyone, not just people with disabilities, will significantly improve the experiences of navigating health care services, which can be overwhelming and complicated. Patients with and without disabilities and their caregivers or care partners will better understand the importance of taking medication as instructed, feel comfortable asking questions, feel less anxious being in a hospital, etc.

Some adaptations for accessibility are simple and easy to make to the existing mode of health care provision, and some require planning to implement. Of course, accessibility of the physical environment of health care facilities is best made from the beginning, i.e., designing the physical building and procurement of equipment.

It is best practice to involve and listen to persons from diverse disability groups in any planning of health care services, from the beginning to the end of the whole process. This includes making plans to retrofit or renovate the existing physical environment for accessibility and building new health care facilities. Similarly, co-designing and co-delivering disability-related health care training together with persons with disabilities will enhance the skills and knowledge of health care service providers in supporting persons with disabilities.

Below lists the basic strategies that make health care services accessible to ALL:

• Health care information in accessible format – medication instructions and labels, information brochures or multimedia sources
  • Braille
  • Large print
  • Easy-read written information
  • Sign language interpretation: Bahasa Isyarat Malaysia (BIM) in videos
  • Closed-captions or subtitles in videos
  • Audio format
• Communication with persons with disabilities
  • Provide sign language interpretation: Bahasa Isyarat Malaysia (BIM)
  • Plain language explanation, avoid jargon
  • Avoid using ‘baby’ tone/speak with individuals with disabilities, especially individuals who are no longer toddlers
  • Communicate with the individual with disability as much as possible
  • Allow time for the individual with disability to respond to questions or complete tasks
• Removing physical barriers – hospitals, clinics, rehabilitation centres
  • Wheelchair-accessible paths, including dropped kerb, safety-compliant ramps, wide doors; including spaces that lead to the building such as parking or public transport stations
  • Accessible and clean toilets
  • Simple, clear signage for directions
  • Accessible medical equipment, e.g., height-adjustable examination table and mammography equipment
  • Reasonable adjustments to reduce sensory overload, e.g., noise, lighting, crowd, temperature
  • Accessible public transport system to health care facilities
• Predictable environment
  • Organised appointment system – reduce anxiety by avoiding unexpected long waiting time
  • Procedures are clearly explained in advance, medical and administrative

Resources

*Note: Resources linked are in English and pdf format, unless stated otherwise.

Barriers to Healthcare

Disability and Health by World Health Organization

Women with Disabilities: Healthcare Barriers in RUH Global Impact

Barriers in access to healthcare for women with disabilities: a systematic review in qualitative studies by Behzad Karami Matin, et al. in BMC Women’s Health

Improving Health Outcomes for Black Women and Girls With Disabilities by Megan Buckles and Mia Ives-Rublee

Ableism in Healthcare

Encountering Ableism in Health care by Lelaina Lloyd in NeuroMyelitis News

Dealing with Medical Ableism by Andrew Pulrang

These Doctors Admit They Don’t Want Patients with Disabilities by Gina Kolata in New York Times

Medical Ableism is a Cultural and Institutional Issue, not an Individual Problem by Marisa Kierra in The Black Youth Project

Disabled Doctors Were Called Too ‘Weak’ To Be In Medicine. It’s Hurting The Entire System. By Wendy Lu for Huffington Post

Ableism in the medical profession by Shane Neilson in Canadian Medical Association Journal

People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as Coronavirus Spreads in Propublica

People with Disabilities Fear Pandemic Will Worsen Medical Bias in NPR

Research Papers and Reports

World Report on Disability by World Health Organization and World Bank

Access to health for persons with disabilities by Tom Shakespeare, Tess Bright and Hannah Kuper for The Office of the United Nations High Commissioner for Human Rights

Report on the rights of persons with disabilities to the highest attainable standard of physical and mental health by UN Special Rapporteur on the rights of persons with disabilities

Report on the impact of ableism in medical and scientific practice by UN Special Rapporteur on the rights of persons with disabilities

“It’s Not Rocket Science”: Considering and meeting the sensory needs of autistic children and young people in CAMHS inpatient services by National Development Team for Inclusion, UK

Impact of Patient Communication Problems on The Risk of Preventable Adverse Events in Acute Care Settings by Gillian Bartlett, Régis Blais, Robyn Tamblyn, Richard J. Clermont and Brenda MacGibbon in Canadian Medical Association Journal

Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care by Clarissa Kripke in American Family Physician

Adults with Communication Disabilities Experience Poorer Health and Health care Outcomes Compared to Persons Without Communication Disabilities by Michelle L. Stransky, Kristin M. Jensen and Megan A. Morris in Journal of General Internal Medicine

The Current State of Health Care for People with Disabilities (US) by The National Council on Disability

Guidelines and Toolkits

Medical treatment and care of people with disabilities by Swiss Academy of Medical Sciences

Health Care for Adults with Intellectual and Developmental Disabilities: Toolkit for Primary Care Providers by IDD Toolkit Project Team, Vanderbilt Kennedy Centre

Health Guidelines for Adults with an Intellectual Disability by University of Hertfordshire

Modernizing Health Care to Improve Physical Accessibility by Centers for Medicare and Medicaid Services