Pakistani mother with disabled son builds an institute for differently-abled

ISLAMABAD: A Pakistani mother who has a son with disability is now working to build an institute for other disabled children to have the same opportunities as her son had in Europe.

This could be not only interesting but very encouraging and motivating to know that a mother of disabled child in Pakistan built an institution to reduce sufferings of many mothers carrying similar children.

While looking around the country at what was available, she realized appropriate therapy, needed for a special child like her son, was nowhere to be found in Pakistan.

The mother, who belonged to a business class family in Khyber Pakhtunkhwa (KP), a district in Pakistan, was gifted a disable child by God, named as Akbar around 39 years ago.

While trying to provide the best health services to her child both in Europe and Pakistan, the mother had finally decided to establish a health institute, Akbar Kare Institute (AKI), in Peshawar in 2005 to extend the same facilities to other disabled children of the province.

Through this institute she succeeded to develop a comprehensive service which offer best practice interventions that are endorsed globally. The institute is now recognized both nationally and internationally as being a good model to follow for childhood rehabilitation in low-and-middle-income-countries (LAMIC).

AKI is now a Family Centered Service (FCS) caring for children with disability from birth to 14 years of age. AKI offers a unique service not available anywhere else in Pakistan. The institute’s caring is much more than rehabilitation or therapy as it might be perceived.

AKI, a non-profit organization registered with Securities and Exchange Commission of Pakistan (SECP) under section 42 of companies’ act 2017, certified by Pakistan Center for Philanthropy (PCP), had started the journey in Peshawar in 2005.

“From nothing, around 18,000 families are now registered with the AKI. It shouldn’t have been a surprise to us that the need was there. That we now see more than 2,500 new children each year, when no other government or NGO have such caseloads, tells us we are doing something good. Most of our referrals are from word of mouth, from one family to another telling others of their good experience at AKI and also a huge number is being referred by Government facilities,” said Mrs. Yvonne Frizzel, an Irish expert/physiotherapist who is supervising the institute for a long time.

“We understand the fact that a child with disability has excessive dependence on his family and hence, we must empower the family to give their child the best chance to make life as good as it may possible”.

“We learn how such child lives his life so that we can support and guide the parents about the things they can do to help their child. Each child has unique needs and each family has different resources available to them. There is no one ‘blue print’ that will fix the problems they may have,” she added. However, she added, with experience and professional knowledge, the AKI offers a variety of therapy inputs that we know will make a difference to the child and give his family the comfort of knowing that they are doing the best for their child.

According to her, AKI provides all clinical services inclusive of assertive devices free of cost. At Akbar Kare Institute no family pays any money for any service which includes physiotherapy sessions for rehabilitation of child, preschool educational sessions, provision of assistive devices (appliances), orthotics and prosthetics services.

The institute also provides social support to most poor families by providing them monthly cash grants to the families who have children with severe food deficiencies, transportation allowance to families who worked on daily wages like labor who can’t afford to take day off from their work and bring their child to AKI for clinical services. Medicines, lab test costs, clothes/shoes, diapers and biscuits for instant energy are provided to poor families.

Clinical Rehabilitation Services: The experts/doctors at AKI work primarily with children who have Cerebral Palsy, Spina Bifida, Down syndrome, neuromuscular disorders, genetic disorders, and muscular dystrophies. Initial assessment of the children is done on the World Health Organization’s (WHO) recommended guidelines by implementing the International Classification of Function and Disability (the ICF).

“As a Family-centered care organization, we use a partnership approach to health care decision-making between our professional team and the parents and care givers. We engage families of the patients to actively participate in the rehabilitation of their children and they are present and active in every treatment session. Through parent’s engagement with us in the center, they learn that they can change how their child develops by using techniques learnt at AKI to help them at home,” Mrs. Yvonne Frizzel said

Education department: Our special teacher sees on average 30 children every week. Many of her sessions are one-to-one personal teaching activities. Only 8.4% of school-age children who attended AKI have any access to public or private schools in KP because of their disability.

The children, our teacher and her assistant work with are those that have never been to school. They may have problems with attention, with behavior and their parents may not have even considered that school is an option for them.

Yet every child has the basic right to education according to their needs to allow them to associate with their peers, to be stimulated to develop their social skills and to gain any opportunity for learning that may benefit them as they grow up. There is of course the added advantage when children go to school that every parent with children understands, the mother and father are free to go to work and carry out home duties, for all the family’s benefit.

For supporting those disabled children who cannot stand up and to move around, the institute has built a dedicated on-site workshop that makes simple appliances, corner seats, standing frames, a variety of chairs for different disabilities, mobility trolleys for very young paralyzed children and other postural aids, as required. This is a most valuable service that ICRC has provided all the equipment for.

Signed MOU with KP Government: In 2019 AKI signed MOU with the Provincial Government of KP to provide support in developing a PC-1 for rehabilitation of children with disabilities in Khyber Pakhtunkhwa with the goal to decentralize services by training clinical staff, PTs, SLPs and OTs, in Pediatric rehabilitation to work in 7 Divisional centers.

A formal agreement and facilitation at government level to extend the services of this institute is still awaited.

Ghulam Abbas
The writer is a member of the staff at the Islamabad Bureau. He can be reached at [email protected]
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