Action map provides ideas to support caregivers of persons with disabilities

Mr Anand Lal quit his job five years ago to care for his son Krish full-time. They communication through an iPad app.
Mr Anand Lal quit his job five years ago to care for his son Krish full-time. They communication through an iPad app.ST PHOTO: DESMOND WEE

SINGAPORE - A new action map will lay the foundations for organisations and agencies in improving the lives of caregivers of persons with disabilities in the coming years.

The Caregiver Action Map launched on Tuesday (July 6) is a guide for social service agencies and other organisations seeking to develop or improve support for caregivers of persons with disabilities.

Facilitated by the Institute of Policy Studies and SG Enable, the map is developed by the Coalition of Partners for Caregivers Support - a group of 25 community partners, social service agencies and hospitals that came together in 2018.

The map's three key pillars are user-centric service delivery, self-help and mutual support, and community and social inclusion. It offers more than 60 ideas and agencies can come up with initiatives to better address the needs of caregivers.

For example, Minds, a charity that supports people with intellectual disabilities and their families, is piloting an online toolkit meant to help with future care-planning conversations.

Minds head of caregiver support services Ong Lay Hoon said one key issue raised in the discussion sessions the coalition had was that many caregivers worry about what will happen to their children when they die, and they are at a loss on where and how to start planning for it.

"We plan to pilot this programme to reach out to at least 300 caregivers by the end of the year," said Ms Ong.

Minds also plans to do more with its siblings support programme, which aims to support and help siblings better understand their roles in caring for a family member with intellectual disability and build positive relationships, she said.

The programme is for siblings of all ages and caters differently for each age group, such as having school holiday activities or quarterly support group sessions.

There are now about 120 people on the programme, including those who are transitioning to take over from their aged parents the care of siblings with special needs.

Ms Prema Govindan, director of caregivers support at SG Enable, said that from the agency's regular engagements with caregivers, a recurrent theme was the need for greater peer support and better navigation of the different services and support available in the community.

She said: "Caregivers of persons with disabilities are very concerned about looking after their loved ones, but they forget about themselves like looking after their health and getting respite."

SG Enable regularly consults about 50 caregiver support group leaders, who each look after another 10 to 50 caregivers. The agency also has a database of 1,000 caregivers that it is in touch with.

Ms Prema said: "We hope to constantly update the map as the needs of caregivers change. We hope to have a better idea then, of the areas we are doing well in, areas we want to focus on, and new areas of concern that emerge."

One example of how schemes can be rolled out after identifying needs on the ground is the Take-A-Break respite programme that began during the circuit breaker last year.

"During that period, a lot of centres (like day activity centres) were closed. So we worked with private providers to offer respite, and till now this is still ongoing," said Ms Prema.

For Mr Anand Lal, 51, the caregiver support groups he is a part of have been a huge help. His older son Krish, 14, has intellectual disability and apraxia, a neurological disorder that can lead to speech impairment.

Father and son communicate through an app on an iPad.

Mr Anand quit his job as a project manager five years ago to care for Krish full-time. He is now a swim coach.

He said: "These support groups help me with getting the information I need. For example, recently I was very worried about Krish getting his Covid-19 vaccine shot. The doctors in the community chats advised me and some of them invited me for a cup of coffee to explain further.

"The moment I put anything into the chats I get a lot of info and advice, or get referred to other help, so I feel very empowered. When I first started out caring for Krish (when he was diagnosed at 18 months old), I was spending a lot of money but not getting anywhere."

One of the biggest challenges Mr Anand and his wife, 48, a chief executive at a healthcare institution, faced when Krish was diagnosed, was trying to understand what their son needed, and knowing where to find help and how to plan things like finances.

Now, resources and knowledge are more widely available, he added. The couple also have a 16-month-old son.

"As we move forward, the eternal worry is whether I can ensure I can always provide for Krish adequately, both during my life and after life," said Mr Anand.

He hopes there will be more job opportunities for those with disabilities who are able to work so that parents and caregivers can rest easy. For others who are unable to work, he hopes that there will be community living spaces available for them.