An unbreakable bond: Love always wins for Jamila and her family

From left: Jamila, her aunt Alimah, her grandmother Mdm Peer, her mum Atika, their family’s domestic helper Masnuah and her uncle Abdul Seram at Seram’s flat

When Jamila Mustaffa was 13 years old, she took on the responsibility of looking after her 20-year-old uncle, Abdul Seram, who was born with an intellectual disability.

Their routine comprised travelling to various hawker centres in Singapore, where Seram worked on tasks like washing dishes and cleaning tables. While he excelled at repetitive tasks, any deviations would derail his day.

“He would not go to work if they changed the routine,” Jamila recounted. “If there were any changes, the supervisor would try to get in touch with me so I could go and re-orientate him.”

The challenges were not confined to the workplace alone. When bus timings or routes changed, she would learn what they were before teaching her uncle the new commute. At home, Jamila also assisted him with simple tasks like buttoning his shirt, all while she was schooling.

Caregiving from a young age 

Growing up, Jamila often accompanied Seram around as he enjoys the freedom to move about independently.

From the late 1970s to 1986, Jamila and Seram were just two of 11 family members living together under one roof. At the heart of this household was Jamila’s mother, Atika Bibi Mohammad Ismail, who shouldered the primary responsibility of caring for the family. 

To lighten their mother’s caregiving load, Jamila and her siblings pitched in to care for Seram and their aunt, Alimah Mohammad Shariff.

As Jamila matured, she realised that caring for her relatives while managing her own immediate family’s needs was not easy.

On one occasion, Jamila’s daughter fell seriously ill on the day she needed to bring Seram to the Institute of Mental Health for an important assessment, but there was no one in the family available to help care for her daughter.

“For the first time, I broke down and cried in front of them - Alimah, Seram and Fatima,” she recalled. “At that point I was thinking, ‘What am I doing? Am I compromising my own family life? My mum did that. Am I doing the same thing? History is repeating itself.’”

These pivotal experiences were what motivated Jamila to pursue a career in social work, eventually culminating in her role as a senior social worker at MINDs.

Connecting with IDHealth

In the late 2010s, Dr Chen Shiling conducted regular health screenings at MINDs. That was how Jamila met Dr Chen, who would inevitably transform her family’s lives for the better.

“At that point in time, I raised to Dr Chen that it’s very hard for me to coordinate doctor’s appointments for all of them,” shared Jamila, who was caring for her aging grandmother, mother, aunt and uncle, in addition to her own children.

“She updated me that she was planning to open a clinic of her own and she would like to see my family. I was very excited. That was how my family was referred to her.”

Three years after this encounter, Dr Chen established her clinic, IDHealth  - a feat 12 years in the making.

It all began when Dr Chen was volunteering at MINDs during medical school, and she spotted a gap in the delivery of care to this community.

This drove Dr Chen to begin conducting health screenings at MINDs after graduation, and she realised that although she could identify the health problems of her patients, there was no one who could deliver holistic care. The specialists could only address acute afflictions, but people with intellectual disabilities and their caregivers possess complex needs that required other forms of interventions at home or in their workplaces.

Dr Chen Shiling (left) checking on Atika at the clinic, with Alimah at her side waiting for her turn. This is a unique feature at IDHealth, where persons with intellectual disabilities and their caregivers are provided with integrated, one-stop care

Since then, the doctor has gone to great lengths to find supporters and organisations to accompany her on this journey and share in her vision. It wasn’t until 2018 that Dr Chen was able to write a proposal to Tote Board for a grant under the Tote Board Community Health Fund (TBCHF).

The TBCHF supports the piloting of innovative programmes in the community care sector by social service agencies or non-profit organisations.

One of its priorities is supporting service providers that care for beneficiaries such as seniors and caregivers of people with disabilities. This includes care models that focus on secondary prevention, assisting senior caregivers and/or building community networks.

Besides that, the Fund also seeks to expand community providers’ capabilities and connect them together to streamline the beneficiaries’ journey across multiple services, which is what Dr Chen seeks to do for persons with intellectual disabilities and their caregivers.

Today, Dr Chen’s IDHealth clinic, with its CIHT programme, is the only organisation and charity in Singapore that focuses on healthcare needs for adults with intellectual disabilities and their caregivers.

Watch the video to find out how the TBCHF enables care for vulnerable communities like Atika and Jamila’s family.

Providing holistic care to families like Atika and Jamila’s

IDHealth’s care model is one of a kind. One of its unique features lies in its approach of enrolling both caregivers and patients as a unit. This means that caregivers receive just as much attention as individuals with intellectual disabilities. 

Secondly, IDHealth prescribes holistic interventions and lifestyle measures in the beneficiary’s home or workplace, for the purpose of building an ‘ecosystem’ – a sustainable care environment.

In Jamila’s case, her family is attached to a social worker, Ilham, and a registered nurse, Nadzira, who serve as points of contact with the clinic. Ilham focuses on advocacy, documentation and coordination to cater to the family’s needs, while Nadzira addresses their health concerns and guides them on their next steps. 

Registered nurse Nadzira conducts a home visit and explains to Alimah about her medication. This helps reduce the stress for caregiver Atika

Home visits conducted by Ilham, Nadzira and occasionally Dr Chen, are a key aspect of IDHealth’s service. It enables the team to assess the family’s home environment and make the right recommendations.

For example, after noticing that Seram often gets lost on his way home, Ilham and Nadzira took him on a community walk to familiarise him with his environment and build rapport with the neighbours and nearby shop owners.

Social worker Ilham accompanies Seram for a walk around his neighbourhood. These familiarisation walks help the latter maintain his independence in the community.

Through home visits, the team noticed Atika and Alimah developed mobility issues in their old age, and hence worked towards fall-proofing their home.

IDHealth also partners with many healthcare providers to meet the beneficiaries’ needs holistically.

Alimah works closely with her designated physiotherapist from the Tan Tock Seng Hospital Community Rehabilitation Programme to address her joint pain, while Atika regularly sees a counsellor from Khoo Teck Puat Hospital to alleviate the anxieties and stresses that come with being a lifelong caregiver. 

Improved quality of life

Dr Chen has spent years building a relationship with the family and is now a familiar face with whom Seram and Alimah can comfortably open up to if they have any physical discomfort or health concerns

Dr Chen has spent years building a relationship with the family and is now a familiar face with whom Seram and Alimah can comfortably open up to if they have any physical discomfort or health concerns 

Jamila and her family members are aging now and have more health issues as time passes, but Jamila finds solace in knowing that IDHealth can cater to her family’s needs.

“I feel more confident right now.” Jamila said. “My mom also said she feels good because it reduces her worries and concerns, and that helps her to be able to focus on herself.”

With the support of the community, Dr Chen, IDHealth and their partners, the caregivers of the family finally managed to go on a vacation to Bali in May 2024.

This holiday marked the first time Atika and Jamila could be carefree.