The urgent need for inclusivity in healthcare for persons with disabilitiesJune 21, 2022
In March this year, a netizen posted a video mocking persons with disabilities on social media. The video went viral in Malaysia, sparking a nationwide political and public uproar. Despite the progress made in the last decade for persons with disabilities across the region, incidents like these are testament to the fact that there is still not enough community awareness and support for persons with disabilities. The community still faces social stigma, and more must be done to address their needs, and to plug gaps in areas like healthcare and employment.
There is an estimated 200 million people globally living with intellectual disabilities, and they are one of the world’s most socially isolated, misunderstood, stigmatized and underserved populations. They do not enjoy equal opportunities, whether at the workplace, in schools or on the sports field. Disparities and inequalities in essential healthcare access People with intellectual disabilities (PWIDs) are often denied equal access to quality healthcare despite the severe need and higher health risks. Studies have found that PWIDs are twice as likely to die before 50 due to delays or problems investigating, diagnosing, and receiving appropriate care. Globally, out of every 10 Special Olympics athletes, 6 are overweight, 4 have untreated tooth decay, and 5 have significant problems with flexibility, putting them at risk for injuries. Quoting a research paper on Unmet Health Care Service Needs of Children With Disabilities in Penang, Malaysia SH Tan, MBBS, MPH (first Published June 29, 2015, Pacific Journal of Public Health), information on unmet healthcare needs reveals problems that are related to unavailability and inaccessibility of services. The study found that the much needed and yet highly unmet services included dental services (49.6% needed, 59.9% unmet), dietary advice (30.9% needed, 63.3% unmet), speech therapy (56.9% needed, 56.8% unmet), psychology services (25.5% needed, 63.3% unmet), and communication aids (33.0% needed, 79.2% unmet). Access problems were also mainly due to logistic issues and caregivers not knowing where to obtain services. COVID-19 has made the challenges more gruelling. While the public was still able to contact the public healthcare facilities to explain their situation and to seek advice on health matters, appointments at healthcare facilities were being deferred as staff were deployed to attend to only the most critical cases. Through the pandemic, technology has proven to be a significant game changer for many industries, helping to revolutionise processes and streamline operations. While we typically associate technology with expanding business growth for the private sector, the use of technology within the non-profit sector can help bridge the inclusion gaps for PWIDs and larger society. Technology to bridge gaps: Creating accessibility, reducing schisms Through the use of technology, the team at Special Olympics has helped to level the access to quality healthcare for PWIDs and their communities. During the pandemic, we launched a series of Easy-to-Read Swipe Health Cards, to help PWIDs stay updated on the latest health information during the Covid-19 pandemic.The series was aimed at helping PWIDs better understand Covid-19, and how to take care of themselves during the pandemic. This mode of communication allowed simple messages to be transmitted via text messages, making essential health information easily accessible to PWIDs and those who may not have access to the most advanced technologies. Each card would contain messages not just about COVID-19 but also general health facts. Topics included general hygiene, vaccination information, as well as messages on how to stay clean and safe, and the proper way to wash your hands. Using technology, we were able to provide effective and useful resources to support and promote the health, safety and well-being of the intellectually disabled (ID) community. To increase knowledge of best practices in caring for and communicating with PWIDs, Special Olympics also developed a series of free e-learning training courses for healthcare providers on working with PWIDs. These interactive learning experiences arm healthcare professionals with the knowledge and expertise to properly diagnose, treat and care for PWIDs. We found that healthcare providers who had completed the training demonstrated improved awareness and self-efficacy in providing care for and communicating with patients with ID. 82% reported that they are better able to communicate with patients with ID; 79% said they have a better understanding of the health needs of PWIDs; and 78% strongly agree that they are confident in their ability to provide health services to PWIDs. Caring for people with special needs Local universities and the Ministry of Health of Malaysia have hosted webinars on caring for people with special needs, including preparations prior to seeking care, looking out for signs and symptoms that are of concern, and use of mobile phones in video health consultation and triaging. On the fitness front, the team at Special Olympics has also been innovative, coming up with online fitness classes for families to participate, and even virtual sporting competitions across the region to enable athletes to stay engaged and active. The impact of COVID-19 has affected every segment of the population but has been magnified for PWIDs. The lack of in-person teaching, hands-on training and fitness activities, has had a detrimental effect especially for those who need more face-to-face interaction and one-on-one coaching and care. A joint study [*United Nations Children’s Fund, The impact of COVID-19 on Children with Intellectual Disabilities and their Families in Sabah, Malaysia. UNICEF, Malaysia, March 2022 [internal publication date]] conducted in Sabah by Special Olympics and UNICEF during the pandemic found that families with young children with intellectual disabilities were disproportionately affected by the closure of schools. Without the support of educational institutions and community-based rehabilitation centers, and left in the care of their families only, children with ID were increasingly isolated and sedentary, which had a detrimental effect on their physical, social and emotional development. 29% of children reported experiencing worse mental health. Parents were also adversely affected, with 60% reporting a decrease in income, 39% reporting an increase in stress levels, and 12% experiencing worse mental health. Special Olympics has tried to alleviate the problem by using technology to provide virtual engagements that allow young athletes to keep fit at home with their families through a series of simple fitness activities. But the restrictions over the past two years have meant that despite best efforts, the number of athletes actively engaged in sporting activities with Special Olympics across Asia Pacific have fallen by more than 80%. It is therefore crucial for us to now reconnect and rebuild as restrictions are now lifting, to continue to foster greater inclusion for people with disabilities. Moving forward from the pandemic, technology will continue to help bridge the gap, to raise awareness, and provide greater access and education. To mitigate the effects of the social isolation and having to provide full-time care for family members, children in particular, Special Olympics Sabah reached out to families and the public engaging them in a four-part talk on mental health on the Zoom platform in July and August 2021. Over the two months, a certified Mental Health and Psychosocial Support trainer covered topics ranging from child development, care for parents to psychological first aid. Postgraduate students of the Faculty of Dentistry at Universiti Malaya also reached out to 23 athletes of Special Olympics Selangor and the Federal Territory of Kuala Lumpur in March this year. Activities such as tele-consultation and video instruction for good oral hygiene practices were offered in addition to gathering information on their oral health and referral for follow-up dental care. Building an ecosystem of partners for inclusive healthcare Partnerships are significant in ensuring that PWIDs are given equal access to quality healthcare. At the core, the way forward will have to be based on pervasive partnerships with governments, healthcare entities and other partner organisations to support efforts to increase access to care and prevention programmes. Often, PWIDs are put in situations where they feel discomfort or are unable to communicate with medical professionals, and more must be done to ensure that our healthcare practitioners are equipped with the skills and expertise in caring for and communicating with PWIDs. It is therefore essential for such knowledge to be embedded in medical curriculums so that healthcare professionals and medical students will be able to better understand and engage with PWIDs, properly diagnose, treat and care for them. When a partnership and education ecosystem is established, inclusive programming can truly flourish. We look to use the combined might of network and knowledge to influence private and public sector entities to adopt more inclusive practices and develop programmes that help train and empower our athletes and caregivers to become vocal advocates for the inclusion cause. |
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