Most days are a race against time for 25-year-old Shehnaz. She spends the mornings teaching at a private school near her home. When the bell rings and it is time for the lunch break, she runs back home to tend to her two physically disabled siblings, Khalid and Afshan. She then goes back to school. And after her day at school ends, she rushes back home and catches up on household chores.

She spends the rest of her time taking care of her two siblings. Without Shehnaz’s interventions, they continue to lie in the same position for hours. Because of staying sedentary for long stretches of time, Khalid has developed bedsores and a fever, and this has resulted in many sleepless nights for him and Shehnaz.

Khalid is 20 and Afshan is 14. But the two suffer from a severe physical disability, making them fully dependent on Shehnaz for their personal care and daily tasks.

The two seemed like all the other children as newborns. But, eventually, Shehnaz’s mother suspected that something wasn’t right. The family had a history of physical disabilities and Shehnaz had seen similar cases before. Khalid and Afshan weren’t playing and running around like other children their age, and would frequently fall.

In the near-total absence of support systems for persons with disabilities, their family members often have to dedicate their lives to caregiving, while struggling financially and emotionally. How can we provide better care for disabled persons? And how can they be supported to lead fuller lives with equal opportunities and self-respect?

The doctors confirmed what Shehnaz’s mother had already felt. Khalid and Afshan were suffering from a genetic disorder. The doctors advised the mother not to spend money on treatment as her children’s condition could not be cured.

“My mother was a strong woman,” Shehnaz recalls fondly, but with unmistakable pain in her voice. “She not only used to look after them [at home] but also earned a livelihood by raising animals and selling milk,” she adds.

The children’s mother took them to different doctors and hakims, and spent a lot of money, hoping for a miracle cure. All to no avail.

She would take care of her children. Manage everything. And continued to put their needs before her own until her last breath.

A year ago she passed. Now the entire responsibility was on Shehnaz’s young shoulders.

Shehnaz is struggling to fill her mother’s shoes. Her job as a teacher at a private school earns her a meagre 9,000 rupees. This is barely enough to pay for her siblings’ medications and diet. Her aunts often have to help her to meet these expenses.

Shehnaz’s father, a small farmer at a village in District Mohmand, earns barely enough to meet the other household expenses.

With her mother gone, Shehnaz finds herself very alone. But she is one of thousands of caregivers and family members of persons with disabilities who struggle every day.

Pakistan’s social protection system is weak and there is next to no support for families whose children or older adult family members are living with severe disabilities, says Atif Sheikh, the executive director of the Special Talent Exchange Programme (STEP), an organisation working for the empowerment of persons with debilitates.

The Sindh Empowerment of Persons with Disabilities Act, 2018 being the most progressive legislation, asks for “care-giver allowance to PWDs with high support needs” to ensure their right of adequate living standards and social protection.

So parents whose children are severely disabled are left with no choice but to look after such persons on their own, Sheikh points out. This leaves them under a lot of physical, emotional and financial strain.

While there are some organisations that provide supported care residential facilities, they tend to be expensive and beyond the reach of lower- and middle-income families. “Besides, [these organisations] do not provide very good care,” Sheikh says, adding that these organisations often resort to drugging the people living at their facilities so they keep sleeping. They also do not arrange any physical activities for the residents, damaging their organs further due to negligence.

Sheikh emphasises that the state should own its children with severe disabilities. He points out that sometimes these individuals need lifelong support. “There can either be residential facilities for specialised supported care, or trained personal care attendants should be provided to such people at homes, who can help with everyday activities,” he says.

LEGAL PROTECTIONS

National and international laws, to which Pakistan is a signatory, make it mandatory for the state to take measures to enable persons with disabilities to live independently.

“Persons with disabilities must be able to live independently, to be included in the community, to choose where and with whom to live and to have access to in-home, residential and community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community” states the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which Pakistan ratified on July 5, 2011.

After the devolution of the subject, the provinces/territories have enacted their own laws to uphold the dignity and rights of persons with disabilities in line with the international commitments. Punjab and Khyber Pakhtunkhwa are in the process.

The Sindh Empowerment of Persons with Disabilities Act, 2018 being the most progressive legislation, asks for “care-giver allowance to PWDs with high support needs” to ensure their right of adequate living standards and social protection.

The Ministry of Human Rights, which is responsible for the coordination between the relevant federal and provincial departments, and the implementation of international obligations at the national level, says, “a national committee has been constituted to implement commitments including the UN Convention on the Rights of Persons with Disabilities and Incheon Strategy.”

The ICT Rights of Persons with Disability Act, 2020 has been enacted to ensure equal rights of differently-abled persons especially their right to education, health and employment at Islamabad Capital Territory level and, accordingly, the National Council for Rehabilitation of Disabled Persons (NCRDP) is being reconstituted to facilitate the law’s implementation.

But while laws and policy changes are a welcome step, the ground reality for most persons with disabilities and their caregivers remains largely unchanged.

Independent living is a philosophy and movement born during the 1960s in the US. It maintains that persons with disabilities should be able to enjoy their lives no differently than non-disabled individuals. Independent living facilities include an array of services including peer counselling, advocacy, skills training and facilities to live independent life. A personal care attendant service is only one component of it.

Because of unavailable or outdated data, the true ground reality and the plight of thousands remains hidden. Even the statistics on the headcount of persons with disabilities are inaccurate and outdated. Civil society organisations have been campaigning to press the government to ensure an accurate population count of people with disabilities in the upcoming national census.

A NUMBERS GAME

According to the World Health Organisation (WHO), about 15 percent of the world’s population lives with some form of disability, and disability prevalence is higher for developing countries. If prevalence rates are in line with the global average of 15 percent, nearly 34 million people with disabilities could be living in Pakistan (in a projected population of 225 million).

In 2011, Pakistan Poverty Alleviation Fund undertook a comprehensive survey of 23 union councils in seven districts of Pakistan that found that eight out of every 100 Pakistanis were disabled to some degree or other, and one out of every 130 persons had some form of severe disability. The surveys also found that multiple disabilities were common among the population.

A district level Pakistan Social and Living Standards Measurement (PLSM) survey 2019-20 found that 10.7 percent of the population has functional limitations, with 3.4 percent of them having severe disabilities.

Given the high prevalence of polio, diabetes, insufficient maternal healthcare, chronic poverty, illiteracy and a host of other factors, experts believe that the prevalence of disability can be higher than the estimated figures. The most common severe physical disabilities in Pakistan are muscular dystrophy — which is genetic — cerebral palsy and spinal cord disability, that is accidental.

UNMET NEEDS OF UNCOUNTED PERSONS

Since current and accurate data is a prerequisite for policy and planning, the government’s allocations based outdated estimates are insufficient to meet the needs of the growing population.

There are some programmes and schemes run by the Pakistan Baitul Mal (PBM) that provide assistive devices and one-time financial assistance to persons with disabilities.

But there is no programme by any government department for the persons with severe disabilities who need personal assistance.

Recently, the government has started a monthly stipend of 2,000 rupees for the families of persons with disabilities under the Benazir Income Support Programme. But not many know about the programme. Besides, multiple stakeholders and those lobbying for the rights of persons with disabilities say that the stipend should be increased at least up to the level of a living wage.

The resource allocations are not according to the population needs and even the allocated resources do not reach the deserving families due to a lack of awareness, complicated processes and the absence of one-window operation, says Asim Zafar, CEO of Saaya Association of Persons with Disabilities, a non-profit which supports people with disabilities. “A person living with disability in far-off areas cannot afford to travel time and again to hospitals or offices to get disability certificates and then go to inaccessible Nadra buildings for registration,” Zafar says.

He adds that his organisation has now diverted its focus to more remote areas where the poorest live to provide direct aid and independent living facilities.

Zafar says that his organisation used to provide personal attendant care services to many severely disabled persons at their homes for their daily works from 2003 to 2006 but it couldn’t be successful for a long time. There was no legislative and government support to sustain the services, he says. He also adds that there was a lack of awareness among the families about the service, who couldn’t differentiate between the personal care attendant and a house help.

In many other parts of the world, the cost of services of personal care attendants to severely disabled persons are borne and supported by the governments. “The attendants are trained to give personal care for different disabilities and are highly paid,” Zafar says. “Some are full-time caregivers and some work part-time. Volunteers, especially students, work as caregivers and earn to pay their fees. Professionals of other fields also work as attendants in their spare time and earn in exchange of their services.”

But here most families look after such persons on their own or those with the means hire services of medicare companies.

SHARED PLIGHT

There are many caregivers such as Shehnaz. Many families such as Khalid and Afshan’s. They all have different stories. But they also have much in common. After all, they are all struggling to take the best care of their loved ones in the near-total absence of support.

In Rawalpindi, 31-year-old Mohammad Noman has been looking for an affordable attendant for his elder brother’s personal care. He has had little luck, and has continued to take care of his severely disabled older brother Sohail, who is completely dependent on others.

According to their mother, Sohail was a healthy child but at the age of seven he had typhoid fever and the wrong treatment of the disease caused his disability. Sohail cannot speak, move or perform other tasks on his own.

Sohail’s father, who used to take care of him, is quite old now and needs care himself. Noman is now the main caregiver of Sohail and his elderly parents. “It’s getting hard for me to manage and I have not been able to go to work,” he says. “For many days I have been working only for a few hours. [Sohail] gets uneasy when I am busy and no one attends to him.”

Noman says that he has not been able to take his brother to hospital and offices to get a disability certificate and special identity card because it’s difficult for him to manage alone. They live on the first floor, he says, and in the hospital and offices he needs one more attendant with him, so that Sohail does not fall off the wheelchair when Noman is away fulfilling official formalities.

Many years ago, Noman says, a non-governmental organisation had arranged a personal attendant for Sohail for a year or so, but then the attendant stopped coming. The family also tried to engage the services of a physiotherapist, but they could not afford the rate the physiotherapist quoted.

Similarly, on the fringes of Takht-i-Bhai, Mardan, 41-year-old Zainab has also been looking after her four disabled sons alone. Her sons, the youngest of whom is 10 and the eldest is 23, are physically disabled and need help with daily tasks.

As her sons have been growing into young men, she is getting older and it is becoming difficult for her to take care of them. “They want a socially fulfilling and active life, and want to go out but there’s only one wheelchair for them,” Zainab says. Sometimes her sons sit outside their home and look at the children going to school across the street.

One can fill pages with tales of the plight of similar families, based across Pakistan. Tales of parents, siblings and family members dedicating their entire lives to taking care of their loved ones with disabilities.

But there are also those who have to find a way to move forward on their own.

In Karachi, Dr Zaib Taj was left disabled after an incident. She and her in-laws were returning home after shopping one day when her brother-in-law had an altercation with the police. The police fired gunshots and kicked the car in which Dr Taj was sitting in the backseat along with her mother-in-law. Her husband was in the front seat.

A bullet hit Dr Taj, paralysing her for life. Her husband, who is a doctor himself, and his family refused to look after her following the incident. She was left alone to deal with this unforeseen affliction.

Dr Taj’s sisters and family stepped up to support her. She remained homebound for seven years, completely dependent on her family for personal care.

She says her sisters, who are working women, used to tend to her at night and go to work in the day. “I was not aware of the concept of a personal care attendant, besides it [would be] expensive for us to hire such services because my family had already spent large amounts on my treatment,” says Dr Taj.

Determined to move forward, Dr Taj started receiving counselling and training from an Independent Living Centre (ILC). She learned to live with her disability and is now part of Disabled Welfare Organisation’s ILC team as a full-time doctor, where she teaches and provides training and counselling to other women with disabilities.

But such facilities are rare and tend to be mostly available in bigger cities. For assisted care and rehabilitation facilities, many families in rural areas move to cities if they can. And those with the means to do so also move overseas for better care of their loved ones.

AWAY FROM HOME

In 1992, on a fateful afternoon, Nabahat Shireen and her family were going to their hometown to celebrate Eid when they met with an accident near Nowshera. Shireen, her husband and their two-year-old daughter got injured but recovered after a few months. But her four-month-old son, Qasim, sustained severe head injuries that gave him lifelong paralysis.

Qasim was diagnosed with cerebral palsy and meningitis that also caused visual and speech impairments, making him completely dependent on his parents. Both Shireen and her husband were working journalists in Islamabad, and they managed to look after their son by arranging a maid specialised in disability nursing. Still, she says, it was so hard for them to manage.

As Qasim was getting older, his nursing and other needs were growing. “He needed specialised care and facilities such as a chair, bed and school,” Shireen says. “And there were not enough facilities to look after and rehabilitate such patients.”

Shireen thought of sending Qasim to a residential care centre and a learning centre, but the state of the centres and the level of personal care provided there appalled her. “Children and adults had head lice and their personal hygiene was not maintained,” she says.

Shireen says her family didn’t want to relocate but for the rehabilitation of her son she and her husband decided to move to the UK in 2005.

There Qasim was treated like any other child and received every facility a ‘normal’ child would get. “In London he was able to access specialised medical care, rehabilitation and schooling,” Shireen says. “He was going to school like normal children for 4-5 hours where he was assisted to study, draw, paint and swim. And I used to be at peace for a few hours and could do whatever I wanted to do.”

He was provided with all the accessories to help him perform daily tasks at home from pampers to a disability and caregivers allowance. He received a powered wheelchair with special features and seating. Occupational and physiotherapists used to come to train not only Qasim, but also train Shireen to look after him with care.

The system there fully supports such children to mainstream them till they turn 18, she says, and after that they provide them assistance to live an independent life.

In 2010, Qasim passed away. He was in his A-Levels. Going through all this for years first-hand changed Shireen as a person and she knows how it feels like to have such a person in the family.

She has continued to work with children with disabilities. She worked as a caregiver for a family that had three disable children. She also worked in a special children’s school. And then she started working as a personal assistant for a 10-year-old girl who had multiple disabilities.

She wishes to establish an assisted care residential facility or a respite centre in Pakistan someday. So families such as hers can have the kind of support she found only after leaving her country.

INDEPENDENT LIVING

Independent living is a philosophy and movement born during the 1960s in the US. It maintains that persons with disabilities should be able to enjoy their lives no differently than non-disabled individuals. Independent living facilities include an array of services including peer counselling, advocacy, skills training and facilities to live independent life. A personal care attendant service is only one component of it.

The Independent Living Centres, run by and for persons with disabilities, assist people with disabilities to live in the community with whatever support they need. Though they are not-for-profit private organisations, they run with the governments’ support around the world.

In Pakistan too there are about five Independent Living Centres operating in Lahore, Karachi, Islamabad, Hyderabad and Multan. But these centres work independently and with a limited capacity. Mostly they provide assisted care within the centre, during office hours.

One of the centres in Karachi has been providing assisted care at home to around 11 families.

Milestone, an organisation working on promoting independent living, also provides attendant care services to about 41 persons with severe disabilities in Lahore, but they charge most families for the service. From the income generated, they pay attendants around 60,000 to 70,000 rupees per month. They also provide free service to a few individuals, who have no one to take care of them.

Lifelong services on a charity-basis are not sustainable, says Shafiq ur Rehman, CEO of Milestone. Rehman, who has worked towards enabling independent living in Pakistan, Vietnam, Cambodia and Nepal, says that if the government shares the burden of caregiving of around 100 families in a village, it would also create job opportunities for 100 people in the area.

“In Japan, millions of people have been providing caregiving services to disabled persons,” he says. “Worldwide, it’s a huge service industry. From Pakistan, too, caregivers go to Japan, Germany and other countries to provide personal care services,” he says.

While caregivers from Pakistan have been going to other countries, Pakistan’s disabled community, and the thousands of families of persons with disabilities, wait for such services.

Members of these families have dedicated their lives to caring for their loved ones with disabilities. But surely, they could use a little help.

The Pakistan Baitul Mal (PBM) has been providing support for persons with disabilities (PWDs) in the following ways:

• 6,373 PWDs have been provided financial/medical assistance by the PBM.

• 80,000 wheelchairs and 2,026 tricycles have been distributed among PWDs since 2008.

• PBM has been providing financial assistance to PWDs with a limited budget. A family with one PWD is eligible for financial support of 10,000 rupees per annum, while a family with two or more PWDs is given 25,000 rupees per annum.

Source: PBM

Asma Ghani is a journalist based in Islamabad.

She reports on social sector issues.

She tweets @asmaghani11

Published in Dawn, EOS, March 20th, 2022