Share the Care - Getting the Conversation Started

Share the Care - Getting the Conversation Started Photo Credits: Share The Care SG & Sally Kwek

It took four final year undergraduates from Nanyang Technological University (NTU) to initiate a three ­month long nationwide campaign to champion the need for better support for Family Caregivers in Singapore. Special Seeds gets up close and personal...

...with the team behind Share the Care SG and the recent Make a Caregiver’s Day to understand the thoughts behind the idea, the impact of the campaign and post campaign plans.

 

SS: Describe Share the Care SG and what it stands for at a personal level. 

STC: Share the Care SG is a campaign that encourages Singaporeans to care for “family-­caregivers” of persons with special needs (PWSN). We seek to raise awareness of the hidden challenges faced by family-­caregivers of PWSN, and educate Singaporeans on how they can provide social support.

On a personal level, it’s our hope that Singaporeans who have been exposed to this campaign message will be more aware, and actively look for ways to support family-­caregivers around them. The family-­caregiver could be an extended family member, colleague, friend, neighbour or even a stranger, but we can do our part in supporting them. This way, family-­caregivers can have a stronger support system.

SS: Being several months into the campaign, do you think its objectives have been met?

STC: Yes! On our Facebook page we’ve published a lot of material. We’ve covered disability specific content, illustrated the challenges that family-caregivers across different disabilities face, and published stories of several family-­caregivers. We continue to highlight the different acts of support the community can perform to assist family­-caregivers. We did three physical outreaches at community events in the Tanjong Pagar GRC & Radin Mas SMC constituency. At these events we distribute information cards with content on the social issue, the key challenges family-­caregivers face, as well as the acts of support, and encourage members of the public to pledge their support. The VWOs and family-­caregivers we’ve worked with are very supportive of our approach and the types of support we are advocating, and that’s very heartening to know. Family-­caregivers are our primary beneficiaries, and it’s crucial that they are able to relate to the campaign.

SS: This all began as your team’s final year project. Can you share with us how and why you decided to have such a project focusing on Family Caregivers?

STC: Since we started brainstorming for a topic last April, our team wanted to work on a meaningful social campaign that made a difference to the lives of others in our community. We noticed that there was a significant amount of attention on the special needs community in Singapore – events like The Purple Parade and the 8th ASEAN Para Games in 2015 – but very few directly targeting the family-caregivers. We also realised that each of us knew someone – be it a friend, neighbour or relative – caring for a family member with special needs. Yet many of us did not know how to step in and offer the caregiver assistance. This generated our interest in the topic, and from there we started speaking with family-­caregivers to gain a better understanding of their situation. Through our conversations, we learnt that while many caregivers appear strong on the surface, they often face tremendous worry and stress during their caregiving. In many ways, these caregivers inspired us greatly! Despite the challenges they face, they still remain positive and love selflessly – values we can all learn from. In our opinion, the community is a vital source of support that is still currently largely untapped. They are the people in closest contact with family-­caregivers, and some might interact with them on a daily basis. So we approached the topic from this angle – where our community plays its part in caring for family-­caregivers.

SS: Prior to this project, have you had any interactions before with persons who have special needs or, people who are caregivers?

STC: Yes, we’ve all volunteered before at activities with PWSN beneficiaries. A close church friend of mine, Adrian, is a caregiver himself. Adrian has three children, two of whom have special needs. He inspires me with the love he has for his children, and is a key reason why I was so keen to approach this topic of assisting family-­caregivers. 

SS: What were the feelings that the team have when meeting the families for the first time? Any surprises?

STC: With the support of partners like AWWA and MINDS, we were invited to several events where we got to connect with family­caregivers. Initially some caregivers were uncomfortable with opening up about their family’s situation as it was sensitive – and we understood that. We assured them that all the information would be kept confidential. It took a while for the caregivers to warm up to us, trust us, and from there open up and share more intimate stories. Thankfully, most were very accommodating. We have befriended many caregivers over the last few months and now keep in touch on a regular basis!

SS: In the process of running this campaign, canvassing for support and meeting up with the families, name one thing that happened which left the greatest impression on you at a personal level.

STC: My biggest takeaway is the learning journey. I am immensely inspired by the people I meet who have already been consistently making a difference to PWSN and their caregivers. For instance, Anne Wong, a caregiver herself and founder of Family Inclusion Network (FIN) – a network for families of PWSN. Kenneth Mah, a caregiver himself and founder of Rare Disorders Society of Singapore (RDSS). Lincoln & Grace, founders of Jesus Club – a Christian ministry for adults with intellectual disabilities. Each of them have pioneered a “support network” that is making a huge difference to the lives of family-­caregivers and the PWSN. I have learnt much from each of them, and their dedication to serve the special needs community. 

SS: In what ways do you think Share the Care SG has made a difference to how Family Caregivers will be supported in Singapore? What are your plans to sustain the movement post campaign?

STC: Most importantly, I think Share the Care SG has made the social issue of “supporting family­-caregivers” more salient. We’ve had the opportunity to speak on 938Live, Capital 95.8FM and Warna 94.2FM about this issue, while TODAY, The New Paper (twice) and The Straits Times have run stories on family-­caregivers that we’ve pitched – see below.We are very thankful that Minister Chan Chun Sing, Ms Denise Phua and George Young have joined us as ambassadors of Share the Care SG. Minister Chan was previously Minister, MSF, and is familiar with this subject. George Young and Ms Denise Phua, as caregivers themselves, shared the need for supporting caregivers based on their own personal experiences. They are key voices for family­-caregivers in Singapore, and play a pivotal role in making this social issue more salient. So we do our part, and this complements efforts by other organizations like MINDS, RDSS and the stories they generate on caregivers. We believe greater media coverage of this social issue will create greater awareness amongst Singaporeans. And from there, Singaporeans will also be inspired to help family-­caregivers. Sustainability ­wise, that’s something my team will be discussing. We’re supported by Central CDC’s Do­Good Fund and Central CDC are the organizers of The Purple Parade, so that’s something we’re interested in exploring. Some parents have also reached out to us with proposals to collaborate and run awareness campaigns on our platform, so that’s something we’re looking into. We’ve partnered closely with several VWOs over this campaign – AWWA, CPASDSA, MDAS, MINDS, RDSS, SPD – and we’ll be sharing our campaign findings with them. NCSS also reached out and is keen to learn more from our research findings, to see how they can better meet caregivers’ needs. So we’re happy to do our part to support these organizations. 

SS: How do you intend to engage the rest of your circle of influence in translating your learnings/experience and convictions about helping such families?

STC: I encourage my family and friends to volunteer and get a first hand experience interacting with family-­caregivers and their family members. This is how my team began – we volunteered at AWWA’s Model Caregiver Awards last August, and it was most insightful! So for our first mass outreach at the Botanic Gardens, 6 friends came along to help spread the message, and at Make a Caregiver’s Day, another 6 friends volunteered. Through these experiences I believe they’ll be able to understand the cause better, and become carriers of the message.

SS: Pre project mindset vs post project mindset. What has changed for you?

STC: We’ve learnt so much from family-­caregivers. Their dedication and love in caring for their family members, resourcefulness in researching for treatment methods, resilience in overcoming obstacles, the list goes on. These are things we sometimes take for granted. Each family­caregiver has their own unique story to tell, and each of these stories are extremely powerful. 

SS: Name 3 things you feel need immediate change in Singapore that can help Caregivers.

STC: 

a) Greater awareness of the different special needs/disabilities ­ refrain from judging when they see someone "different" on the streets 
b) To be more aware of the caregiver’s situation
c) For the community to be more proactive in extending practical support on top of monetary contributions

SS: Name 3 things you will do in your daily life that can help advocate for this community.

STC: 

a) Keep in close contact with the family-­caregivers I have befriended and assist if I can 
b) Look out for volunteering opportunities to serve this community
c) Encourage others to get involved in this cause

SS: What will you say to your juniors?

STC: Consider adopting Share the Care SG, and building on the foundation my team has laid!  

Acronyms Explained
AWWA - Asian Women’s Welfare Association
CPAS - Cerebral Palsy Alliance Singapore
CSCDC - Central Singapore Community Development Council
DSA - Down Syndrome Association of Singapore
MINDS - Movement for the Intellectually Disabled (Singapore)
MDAS - Muscular Dystrophy Association of Singapore
NCSS - National Council of Social Service
PWSN - Persons with Special Needs
RDSS - Rare Disorders Society (Singapore)
SPD - SPD (formerly Society for the Physically Disabled)

Media References
28 Feb, The Sunday Times, It's a tough job, so 'show care to family caregivers'
27 Feb, The New Paper, Caregiver's life revolved around sister for over 60 years
27 Feb, The New Paper, She devotes herself to son with special needs
22 Feb, The New Paper, Brothers with autism spur George Young to raise support for caregivers
17 Feb, TODAY Online, S'poreans not reaching out enough to help caregivers: Survey
11 Feb, BeCause.sg, Kaira, Share the Care SG

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Credit: A video by Channel 5

Credit: A video by Trixie Chua & Celine Kim for Special Seeds Singapore.

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