Life style

Towards a disability-friendly health system

Published

4 years ago

2020/12/6

Gaps in the health care system burden those with disabilities with an added cross. In the backdrop of the International Day of Persons with Disabilities which fell on December 3, we spoke to many stakeholders to push for collective national interventions to enhance the quality of life of those with disability.

by Randima Attygalle

Nisha Shareef from Kandy was born with a rare spinal cord abnormality which left her wheelchair-bound for life. Introduced to rehabilitation at age 11, Nisha’s quality of life improved. Thanks to the vocational training she received through the Ragama Vocational Training School, she learned the art of watch-mending. Today at 50-years, she runs her own business in the Kandy town, her example empowering fellow wheelchair users.

Health challenges for those in Nisha’s shoes are many. Inability to control the passing of urine, catheter and diaper dependency, frequent urine infections and bed sores are among them. Management of all these issues is costly says Nisha who lobbies for a special concession for adult diapers and other medication required by those with disabilities. “Accessibility to public toilets including those at hospitals is a nightmare for us,” she says. Nisha urges the health authorities to have disability-friendly infrastructure at hospitals and to dedicate a help desk and a hotline at least at Teaching Hospitals to assist those with disabilities.

Many young girls and women with mental disabilities and those who are vision impaired left alone at homes are often sexually exploited, she points out proposing a state-supported day-care system to shelter them while their parents or other care givers are at work. This would help ensure their safety.

Having fallen off a rambutan tree at ten, Lasantha Chandimal from Dampe off Madapatha, became paralyzed. Having lost both his parents by 15, Lasantha’s life took a turn for the worse. The Samaritans at the Ragama Rehabilitation Hospital not only uplifted him from a bedridden patient to a wheelchair user but also trained him to maneuver a special tricycle. Lasantha, 36-years old today, has lost his job with the closure of the plastic factory he worked at. His wife, a wheelchair user herself, also worked there.

A spinal cord injury makes Lasantha often susceptible to kidney dysfunction. “I’m a catheter-user and I developed a urine infection during the lockdown which left me helpless with no access to medical treatment. With my temperature running high due to the infection, I called for an ambulance several times to no avail. Finally I had no choice but to scrape my savings and get treatment at a private hospital.”

The absence of special assistance at OPDs, indifference of the support staff and exploitation of those with disability by some, makes matters worse. Improving disabled-health literacy at ground level, improving sanitation facilities for people with disability in hospitals, sensitizing support staff and creating awareness on available help devices are among Lasantha’s suggestions to ease the burden of this community.

Over a billion of people, about 15% of the world’s population, according to the World Health Organization (WHO) have some form of disability. Half those with disability cannot afford healthcare, compared to a third of those without disability. People with disability are more than twice as likely to find healthcare providers’ skills inadequate and people with disability are four times more likely to report being treated badly; and they are nearly three times more likely to be denied healthcare, WHO affirms. The World Bank literature on ‘Disability Inclusion’ documents that ‘many persons with disabilities have additional underlying health needs that make them particularly vulnerable to severe symptoms of COVID-19, if they contract it. Persons with disabilities may also be at increased risk of contracting COVID-19 because information about the disease, including the symptoms and prevention, are not provided in accessible formats such as print material in Braille, sign language interpretation, captions, audio provision, and graphics.’

Translating sensitization on ‘disability and rehabilitation’ into practical reality is urgent, points out Manique Gunaratne, Manager Specialized Training and Disability Resource Centre of the Employers’ Federation of Ceylon. Manique who lost her vision in her 20s due to Retinitis pigmentosa had no proper local guidance to a rehabilitation system. The overseas doctors whom she consulted empowered her on ICT systems available for vision impaired people. “This has made me what I am today,” says the activist who lobbies for help desks which could offer guidance for people with disabilities and their families to make informed decisions. “Very often when a child with a disability is born, parents have no clue what to do with it. If the medical condition turns out to be disability, they are even more helpless,” notes Manique who also proposes a ‘Priority Card’ on health nee

ds and making disability representation stronger at policy-level within the health sector.

The role of collaboration between doctors, physiotherapists and the beneficiary in determining the best assistive device cannot be understated says H.D. Mala Nandani, Administrative Officer, Rehab Lanka which manufactures s

uch devices. “An assistive device has to be a customized and very often there is little awareness among the poorest of the poor who depend on a donated wheelchair which could very often compound the disability.” The National Secretariat for Persons with Disability provides a stipend for such devices, she adds. The local manufacturing volume of assistive devices should be increased for better availability, notes Mala who lost the use of one leg due to a vaccination mishap as a child. “At ground level, the knowledge of personal hygiene among those with disabilities is very poor; hence there should be a system similar to that of midwives to help the families of the disabled in terms of knowledge and guidance to proper health channels.”

The COVID emergency situation which put the local public health system under unprecedented strain has driven the health authorities to design new interventions including meeting the needs of people with disabilities, notes Dr. Shiromi Maduwage, Consultant Community Physician from the Youth, Elderly and Disability Unit of the Ministry of the Health. “We are now developing a system to reach out to those in need in future emergencies. We have already launched a programme to empower care givers during the pandemic. This is facilitated by the National Secretariat for Persons with Disability.

“

A system to improve the COVID-related health messages through Braille and sign language is also underway she says. While the state provides a monthly disability allowance, certain gaps in the system including the need for disabled-friendly infrastructure have been identified; and these need to be bridged, says Maduwage. “The elderly population is growing and disability will be an added burden. Community based rehabilitation is already being strengthened by the health sector to mitigate the challenges and ground level officials sensitized though the MOH divisions.”

Upgrading the school curriculum to incorporate health issues of those with disabilities including their sexual an

d reproductive health and safety can help sensitize future health policy makers to

catering for their needs, remarks Dr. Harischandra Yakandawala, Medical Director of the Family Planning Association and Consultant to the project on sexual and reproductive health during emergencies. “People with disabilities often have barriers in accessing information and we are collaborating with several agencies in addressing this including making online counseling services accessible by victims of gender based violence.” Women and girls with disabilities are the most vulnerable to sexual violence which could result in unwanted pregnancies and sexually transmitted diseases, he says citing the need for organized shelters to provide care for young girls and women enabling their caregivers to be productively employed during day time.

Encouraging all parents to “dream for their child” despite odds, Samanmali Sumanasena, Professor in Paedeatric Disability and Head of the Department of Disability Studies, Faculty of Medicine, University of Kelaniya, urges all partners in paediatric health services to support families with children with mental and physical disabilities. “Research shows that early intervention can make children more cognitively competent and they can be developed into very productive citizens”. In this process, access to correct information, proper referral systems, child intervention services, updated technology for optimum benefits, access to general health care and family support systems are imperative, she says. Training parents and caregivers to routinely intervene to improve their children’s quality of life is important, she points out. Lack of specialists who

can address the concerns of children with special needs in the country is a major bottleneck in enabling wider reach. The Special Needs Programme which was launched in Colombo District in July to meet this challenge is being expanded to the rest of the island as well, says Prof. Sumanasena.

Rehabilitation which is recognized as a human right by the United Nations’ Convention on the Rights of Persons with Disabilities, improves the functioning status of people with disability to achieve the highest possible functional outcome, notes Dr. Sachithra Adhikari, Acting Consultant in Rehabilitation Medicine from the Rheumatology and Rehabilitation Hospital, Ragama.

“Lack of an established care pathway directed towards rehabilitation following initial treatment of disability, is a major drawback. Rehabilitation services are provided only by a few hospitals which hardly meet the need.” She goes on to note that the need to generate awareness on the importance of rehabilitation and its cost benefit both among the healthcare professionals and the public is urgent. Drawing attention to limitations in available rehabilitation personnel and infrastructure, she said the lack of coordinated service provision, leadership for financial and administrative support required for rehabilitation service are problems that need addressing. Also, social acceptance of those with disabilities rather than mere sympathy is important together with sensitivity to their plight.

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Life style

Sri Lanka Eye Donation Society gifts sight to the world

Published

6 days ago

2025/03/16

Thilina Walpola

A School Eye Camp

Founded by the late Dr. Hudson Silva, the Sri Lanka Eye Donation Society (SLEDS) which is nearing 65 years is the first of its kind in the world to provide corneas completely free of charge to locals as well as foreigners through its International Eye Bank. Among the donors of eyes are several Presidents and Prime Ministers of the country. The other affiliated bodies of SLEDS are the Dr. Hudson Silva Memorial Eye Hospital and the Human Tissue Bank which provide a yeoman service to the public.

BY RANDIMA ATTYGALLE

At age 18, Eranga Madushan’s future looked bleak with keratoconus (a disorder of the eye that results in progressive thinning of the cornea) claiming both his eyes. Thanks to his physician’s recommendation for a corneal transplant, Eranga was fortunate to have received suitable corneas from the Eye Bank of the Sri Lanka Eye Donation Society which were successfully transplanted at the Kandy National Hospital.

Now 22-years old, this young man from Minipe has successfully finished his education and is employed. “I even passed the vision test and got my driving license – all made possible thanks to the noble service of the Sri Lanka Eye Donation Society,” says Eranga.

His is one of thousands of such success stories. These exemplify the thought-provoking discourse of Sivi Jathaka story delivered by the Buddha when, in one of his Bodhisathva’s births, he gave away his eyes to a blind beggar. There cannot be a better living testimony to this concept of dana than the Sri Lanka Eye Donation Society (SLEDS), now approaching 65 years.

Separating the cornea from whole globe

Giving life to a dead eye

In 1958 Hudson Silva, a medical student started a campaign under the banner, ‘Give life to a dead eye,’ to popularize the donation of eyes after death to obtain corneas for the Colombo Eye Hospital which had long waiting lists for eye replacements but without sufficient donors. Eyes at this point were obtained only from those who died without custodians in hospitals and homes for the elders and executed prisoners.

With the help of newspaper articles and public meetings, Hudson Silva’s campaign continued. By 1961, he had qualified and appointed a resident surgeon at the Colombo Eye Hospital. SLEDS got underway officially in a very small scale on June 11, 1961 at Dr. Silva’s Ward Place home in Colombo. Among the 40 founding members of the Society was Dr. Silva’s mother who pledged her eyes to be donated after death. When she died shortly thereafter, he himself grafted her corneas on the eyes of a poor farmer and thereby restored his sight. In 1965, Prime Minister Dudley Senanayake presiding at the official opening of the International Eye Bank, pledged his eyes after death. After his demise in 1973, his wishes were fulfilled.

With the objective of extending this service to foreigners awaiting eye replacements, Dr. Silva started connecting with senior eye surgeons from various parts of the world. In 1964 he dispatched his first eyes overseas – flying three set of donor eyes packed in dry ice to Singapore’s Government General Hospital. Thus commenced the country’s international eye donations on a Vesak Poya Day when five Singaporeans regained their sight.

Following the wide media coverage this attracted the world over, SLEDS was able to open its doors to the entire world. In the late 70s, on government-donated land on Vidya Mawatha in Colombo 7, SLEDS’ headquarters along with its Eye Bank were relocated and the present building was built with the help of Japanese funds. It was opened by the then Prime Minister R. Premadasa in 1984.

President William Gopallawa at the event of donating the the land at Vidya Mawatha, Colombo to set up SLEDS

Global demand

Globally, at least 2.2 billion people have a near or distance vision impairment, according to the WHO statistics. In at least one billion of these, vision impairment could have been prevented or is yet to be addressed. The leading causes of vision impairment and blindness at a global level are refractive errors and cataracts.Vision impairment, according to the WHO, poses an enormous global financial burden, with the annual global cost of productivity losses estimated to be US$ 411 billion.

The demand for corneal transplants (keratoplasty) is on the rise with increasing prevalence of eye diseases and the rising elderly population. “Global statistics indicate that over 12.5 million people worldwide are waiting for corneal transplants. We are committed to bridge this gap every year by donating corneas and to date our International Eye Bank had donated 95,151 corneas to foreigners from 57 countries. In addition, nearly 60,000 locals including many soldiers injured in combat, have received corneas,” says the Senior Manager of the SLEDS’ International Eye Bank, J.S. Matara Arachchi.

Donor registration

Having ‘grown’ with the institution since he was recruited in 1979 by the founder himself, Matara Arachchi says that the Eye Bank has decentralized its operations today with 150 branches island-wide enabling more people to become potential donors. The online consent registration facility is also available now on the SLEDS website. “We see an overwhelming interest among youth registering themselves with us to donate their eyes which is very encouraging,” says the official noting that many Sri Lanka Presidents and Prime Ministers have donated their eyes. “A cornea taken from President J.R. Jayewardene was split in two and grafted on to two Japanese patients and his other cornea was grafted onto a local patient,” he says.

Dr Hudson Silva

Potential donors need to be excluded from certain diseases for them to be eligible donors. Apart from registered donors, corneas from the dead are also donated by surviving family members. The youngest such donor was a four-year-old whose parents offered to donate their deceased child’s eyes to help another regain vision.

Harvesting of the eye needs to be done within four hours of a person’s death and the cornea itself has to be used on a patient within 14 days explains Matara Arachchi. “We hardly have any corneas left beyond the shelf life given the big demand for them. In case any are not grafted, they are often used to practice surgery and research purposes.” Donation of eyes does not cause any disfiguration to a body of a deceased, says the official who reiterates that the process enables the donor to look natural.

Preserving a single cornea cost about USD 300- 450 says the official. Corneas are donated to patients operated in both the state and private hospitals without discrimination. The institution, he says, is run on donations made by individuals and organizations. “Although we do not charge foreign recipients, many of them come forward to assist the institutions as means of expessing goodwill and appreciation.”

Eranga Madushan who regained sight thanks to the International Eye Bank

Free eye care

The eye hospital founded by Dr. Hudson Silva in 1992 at the Vidya Mawatha premises, was named in his honour after his death. It is committed to make eye care available to local patients at an affordable price aligned with the vision of its founder. The hospital is equipped with a fully-fledged operating theatre and an OPD with state-of-the-art equipment. Dr. M.H.S Cassim, a former consultant at the National Eye Hospital serves as the Medical Director of the SLEDS and Dr. Shamintha Amaratunge serves as consultant surgeon. “The hospital performs nearly 1,200 cataract surgeries per year and the patients are provided with lenses completely free of charge. In addition, we also provide spectacles to needy people,” says the Eye Hospital’s Manager, H.D.A.J Abhayawardena.

He adds that island-wide eye camps at village and school level are conducted by them to make eye care more accessible to people. The contact lenses laboratory is another ambitious initiative of the SLEDS which is planning to expand its work says Abhayawardena. “With the help of Japanese technology, we set up our own production plant to manufacture contact lenses locally- the first of its kind here at home. This venture can save a lot of money spent on imported lenses.”

Human Tissue Bank

Following the passing of the Human Tissue Transplantation Act in 1987, Dr. Hudson Silva succeeded in establishing the Human Tissue Bank of SLEDS in 1996 enabling Lankans to donate human tissue and limbs in addition to the eyes. “Only people under 70 who are free of certain diseases are eligible to donate tissue and limbs after death and we need to obtain the tissue within 12 hours of a person’s death,” says the Manager of the Tissue Bank, T.B Prabath.

Many orthopedic, plastic, cardiac, neuro, eye and maxillo-facial surgeons have successfully grafted these tissues. During the time of the war, many in armed forces have benefited from the Tissue Bank, says Prabath. “There is an overwhelming demand for tissues for patients involved in motor traffic accidents and those who have sustained burn injuries,” says Prabath urging more people to come forward to pledge their support.

Fashion

Mythical Ceylon Collection by CHARINI

Published

6 days ago

2025/03/16

Thilina Walpola

By Zanita Careem

CHARINI is a well-known brand renowned for its bold yet elegant statement designs and unique concepts. This season,popular designer CHARINI will be presenting a collection that gives Sri Lankan traditional art a contemporary twist, bringing the mythical creatures of Sri Lankan history to life, beautified with floral elements from ancient paintings.

Each element has been meticulously hand-drawn with intricate details, staying true to the rich heritage of Sri Lankan artistry. These hand-drawn illustrations have then been carefully transformed into artworks, which are printed onto fabric to seamlessly blend tradition with modern design. This fusion of craftsmanship and innovation brings a unique depth to each piece in the collection. This is… the Mythical Ceylon Collection by CHARINI.’’

Life style

Experience a memorable Iftar at Sheraton Kosgoda Turtle Beach Resort

Published

6 days ago

2025/03/16

Thilina Walpola

This Holy Month, Sheraton Kosgoda Turtle Beach Resort invites guests to gather in the spirit of Ramadan and indulge in a sumptuous Iftar dinner buffet at S Kitchen, during this month of Ramazan said a press release.

The release said to begin the evening, guests can break their fast with a thoughtfully curated selection, including dates, kanji or soup, dry fruits, and a choice of four refreshing beverages. Light hot appetizers such as samosas, spring rolls, fish rolls, fish buns, mini pizzas, cutlets, mini hot dogs, and satays, along with fresh salads and assorted sandwiches, ensure a nourishing start to the meal.

Following the breaking of fast, guests can then indulge in a lavish Iftar dinner buffet, featuring a rich international spread crafted by our culinary team. From Middle Eastern delights to Sri Lankan specialties and a variety of global flavors.

The Iftar dinner buffet also offers a special promotion, where when you ‘Reserve For Five, One Dines Free’, making it the perfect way to celebrate together with family and friends.

At Sheraton Kosgoda Turtle Beach Resort one can enjoy a truly heartwarming Iftar experience, blending tradition, community, and world-class cuisine in an elegant setting said the release.