Disability/Caregiver Support/Theory of Change

Click on each outcome in the Theory of Change to explore services, gaps and ideas.

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Theory of Change

Short-Term Outcomes(skills, knowledge, attitudes)		Mid-Term Outcomes(behaviours)		Long-Term Outcomes(impact)		Social Impact
	→	Caregivers can easily access respite care options	→	Caregivers are in physical health and have psychological well-being	→	Caregivers can perform care to the best of their capabilities and capacities
Caregivers believe in and are not deterred by regular self-care	→	Caregivers practise regular self-care	→
	→	Caregivers can acquire reliable information and training to perform care	→	Caregivers are equipped with information and skills on caregiving
	→	Caregivers can easily access touch points for information and skills
	→	Caregivers are financially supported	→	Caregivers can bear the added financial costs of care

Programmes

Gaps

Ideas

CAREGIVER SUPPORT

Caregivers

• Those who provide care to a person requiring support due to age, disability, illness or special needs
• Usually family members, but can also be friends or foreign domestic workers
• Can be broadly categorised into two groups: (i) Professional caregivers which include doctors, nurses, social workers, and (ii) Family caregivers, which include spouses, children, grandchildren, siblings and foreign domestic workers hired by their families, family caregivers are focused upon here.
• Special note to two groups of family caregivers: Elderly caregivers caring for disabled adult children, disabled people playing caregiver roles
  • See The Survey on Informal Caregiving by MCYS
    • 20% of family caregivers providing care to elderly persons aged 75 years and above with functional limitations are themselves above the age of 65.
  • See A Profile of Older Family Caregivers by CARE and Duke-NUS
    • Older family caregivers are in declining health themselves but spend long hours (up to 60 hours per week) caring for their family member. More than half of family caregivers up to the age of retirement (55-65 years) are juggling long hours of both formal employment and caregiving.
    • More than half of family caregivers aged 70-74 years do not receive help from anyone else to care for their family member
    • Well beyond the retirement age, family caregivers are spending 50 to 60 hours per week caring for their older family member.

STATISTICS An estimated 210,000 people aged 18 to 69 provide care to a family member or peer. Caregivers are ageing and are becoming less and less able to care for their disabled kin; 70% of caregivers in Singapore (including those who care for the elderly and disabled) are above 40; 10% are between 60 and 69 years of age. Refer to Caregiving in Singapore (Sep 2011) for more statistics on the profile of informal caregivers in the Singapore population and the key characteristics of caregivers and care recipients. Some statistics: 37% of caregivers reported that they had been providing care to their care recipients for over a decade.  On average, caregivers provided around 6.8 hours of care per day in a typical week Close to 74% of caregivers were employed. About 80% of caregivers received some form of support, be it from other family members (70%) and/or domestic helpers (14%). 21% of caregivers reported being the sole caregiver

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Respite care

• Caregivers continue to be concerned about the need for respite care
• Caregivers reported a lack of opportunity for respite, especially when care recipients require round-the-clock care

STATISTICS Over 1,600 people have tapped on respite services offered at selected day care centres and nursing homes. Usage of these respite services has increased by at least 50% between 2015 and 2017.

EXISTING RESOURCES	GAPS AND THEIR CAUSES	POSSIBLE SOLUTIONS
Home Based Care Services Provides alternative care support for adults with disabilities, with the aim of keeping them in the community for as long as possible. Delivers services such as therapy, personal hygiene care, housekeeping and medication reminders. 2 service providers as of 01 July 2018 - AWWA and MINDS	Caregivers reported a lack of opportunity for respite, especially when care recipients require round-the-clock care	To consider commercialising caregiving (e.g. piecemeal/gig caregiving services) In light of an ageing population, decreasing family sizes and caregiver fatigue Can also consider tapping on people who live in the neighbourhood/not working with free pockets of time to provide paid, temporary caregiving services, with financial remunerations and incentives Examples from the eldercare space: Homage, Jaga-Me, Caregiver Asia, Active Global
Drop-in Disability Programme Provides social, recreational and/or therapeutic training activities for persons with disabilities for a few days a week up to 9 hours 4 DDPs provided by Thye Hua Kwan Moral Charities as of 01 July 2018
Day Activity Centres Community-based facilities that provide care and skills training to persons with disabilities aged 16 and above. 30 DACs as of 11 Sep 2018 Clients: 1,200 | 200 are young adults	DAC operating hours are mainly till 4 or 5pm, and caregivers find it difficult to work full-time (till 6 or 7pm), and part-time employment opportunities are limited too - if un-ideal	Consider operating DACs on a shift system to complement working hours of caregivers, e.g., 7.30am - 2.30pm | 12 noon - 7pm, or to open till later
Children Disability Homes (Short-Term Respite) Provides long-term residential care, but also short-term respite care for those whose families are unable to provide care temporarily. 3 homes provide respite care services as of 13 August 2018
Adult Disability Homes (Short-Term Respite) Provides long-term residential care, but also short-term respite care for adults with disabilities whose caregivers are temporarily unable to provide care for them. 8 homes provide respite care services as of July 2018
Respite services offered at selected day care centres and nursing homes under the ambit of AIC AIC page and E-Care Locator here.
One Child One Skill A volunteer project that sends pairs of tertiary students to homes to teach autistic children a skill over 8 one or one-and-a-half-hour sessions Parents identify skills that they would like their autistic children to learn and volunteers choose the child they teach based on the stated skills and location. Caregivers also obtain respite	While caregivers welcome the opportunity for respite, some are concerned about students’ abilities to take care of and work with their children without their supervision

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Physical health necessary to carry out caregiving

EXISTING RESOURCES	GAPS AND THEIR CAUSES	POSSIBLE SOLUTIONS
	Trends Ageing caregivers who need to care for disabled children - Disabled caregivers who perform caregiving, such as for ageing parents with medical issues See also A Profile of Older Family Caregivers by CARE and Duke-NUS	Provision of caregiving leave or time-off, to rest or bring care recipients for medical appointments

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Psychosocial health

• Caregivers expressed the concern that they require self-care
• Stress from caregiving, along with increased time spent on care work affects caregivers' personal health and well-being

EXISTING RESOURCES	GAPS AND THEIR CAUSES	POSSIBLE SOLUTIONS
Community Counselling/Emotional Support Services 14 agencies provide these services as of 02 August 2018	Caregivers reported a lack of opportunity for respite, especially when care recipients require round-the-clock care.	EM3 (Recommendation 13) To expand the continuum of support and respite options, including the implementation of caregiving leave, and to build trust between caregivers and formal respite services Ease access to counselling services, such as counsellors, social workers or volunteers - be it coming to terms with diagnoses of disabilities or assistance with job placement, social assistance and marriage counselling Create more opportunities for caregivers to meet each other as a source of informal support, such as leveraging existing support networks to reach out further For service providers to take family relationships into consideration, as family dynamics are affected if a member has a disability. This could mean designing
Community Support Groups 13 agencies provide these services as of 02 August 2018
Caregiver Activities in the Community 14 agencies provide these services as of 02 August 2018
Caregiving Welfare Association - Caregiver Counselling Services For family caregivers providing care for a senior with physical or mental disabilities

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Financial support

EXISTING RESOURCES	GAPS AND THEIR CAUSES	POSSIBLE SOLUTIONS
Caregivers Training Grant $200 annual subsidy for caregivers, per care recipient, every financial year, to attend training
Foreign Domestic Worker Grant $120 monthly cash payment given to families who need to hire a Foreign Domestic Worker to care for loved ones who require permanent assistance with three or more Activities of Daily Living (ADLs)	Even after subsidies, the remaining cost to hire an FDW is still more than many low-income families can afford Employers must be of sufficient mental capacity to hire an FDW, and cannot have a disability that impairs mental capacity to this degree	EM3 (Recommendation 13): To expand the criteria for the FDW Grant to better cater to disabled people who are physically able to perform ADLs, but who may not have the cognitive ability to perform ADLs or have behavioural challenges that require additional support
Foreign Domestic Worker Levy Concession Lets families pay a monthly foreign domestic worker levy of just $60, instead of $265
Community Long Term Care / Financial Planning Services 4 agencies provide these services as of 02 August 2018
Additional Financial Support for Care Recipients with Disabilities Assistive Technology Fund (ATF) (from 2020) CareShield Life ElderShield Senior's Mobility and Enabling Fund ComCare
Handicapped Child Relief (HCR) Eligibility: Child is below the age of 16, and parent earns less than $4,000, which includes income from bank interest, dividends and part-time jobs. $7,500 per child		Raise or remove the 16-year old limit cap, in the case of single parents as marital breakdown is more common among parents of special needs children, and single parents from the middle/low income group will face additional stress to raise their children single-handedly

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Future care planning

• Caregivers are worried about their future inability to care for their loved ones with disabilities
• Caregivers of children with special needs are also concerned about the post-18 trajectory

EXISTING RESOURCES	GAPS AND THEIR CAUSES	POSSIBLE SOLUTIONS
Assisted Deputyship Application Programme (ADAP) Helps parents of graduating cohorts in Special Education (SPED) schools apply to Court to be deputies for their child, so that they can continue to make legal decisions for their child after he or she turns 21	Demand for affordable deputyship applications greatly exceeds supply of available help, including NUS Law undergraduates - in MINDS, the waiting list runs to a few hundred parents	EM3 (Recommendation 14) To simplify deputyship and Lasting Power of Attorney processes for caregivers MINDS is heading a pilot to simplify deputyship applications for caregivers of graduating SPED students For the government to take up the mantle of facilitating deputyship applications, free-of-charge if possible
Special Needs Trust Company (SNTC) Trust Allows family members to set aside money and assets in SNTC accounts, and aims to safeguard these assets to enhance the beneficiary's financial security and well-being 447 SNTC accounts have been opened, out of 117,000 estimated people who might require it (ST 29 Mar 2017)	While caregivers acknowledged that SNTC was a good start, they were worried about the lack of options for future care needs and planning, beyond placing their loved ones in Adult Disability Homes	EM3 (Recommendation 14) To raise awareness of importance of legal, financial and care planning, and services. SNTC to continue expanding outreach to caregivers, and consider partnering agencies providing direct services to disabled people for more integrated and holistic support to caregivers Service providers, including the Office of the Public Guardian and Law Society, to educate caregivers on legal/financial matters such as applying for deputyship To create a system of support at caregivers' natural touchpoints, that would help them in future care planning such as identifying the next caregiver and transitioning of the caregiver role when the time comes, and including documenting and passing on caregiving knowledge. Enable disabled care recipients to make more independent decisions for themselves for the future, something which caregivers tend to do. Depending on the disability type and functioning level, some caregivers can unintentionally prevent their care recipients from learning useful independent living skills through mollycoddling.
Special Needs Savings Scheme Enables parents to set aside CPF savings for the long term care of children with special needs Parents may nominate their loved one with special needs to receive a regular stream of fixed pay-outs upon the parent’s demise.

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Skills and information to do caregiving

EXISTING RESOURCES	GAPS AND THEIR CAUSES	POSSIBLE SOLUTIONS
Post-Diagnostic Touchpoints (e.g., hospitals, medical personnel)	For caregivers of children diagnosed with disabilities, touchpoints are poorly equipped in advising parents on where to obtain reliable help during the post-diagnostic phase	Recommendations from EM3 that MSF will consider Recommendation 3, Strategic Direction 1: Improve transition management For newly-diagnosed cases, to set up an agency to provide case referral, care planning and advisory services, and to facilitate smooth handover of information to other agencies Includes developing a standardised case management tool between primary support agency and other service providers Caregivers need help to understand the trajectory of caring – what to expect, anxieties and challenges, expectations as well as future planning - and to navigate the system of care
NeuroDiverCity Gathers and shares inclusive services and resources that can be reviewed by parents
All In (in development) Aims "to be a one-stop platform where caregivers can find everything they need" on special needs - guides, assessments, e-shop, blog content, events and courses
SG Enable Currently provides the most comprehensive information covering financial assistance, hospital and training support Caregiver Service Matrix caa 02 August 2018 Hosts the Caregivers Pod, a space for caregivers of people with disabilities, and stakeholders to organise activities and events	Knowledge and level of assistance received by caregivers differ depending on the experience and knowledge of providers they meet Some caregivers deny that children have special needs Some caregivers reject support services for those in their charge.	EM3 (Recommendation 13) For social service agencies to have a good understanding of community resources available for advisory and referral; one method is a one-stop portal to provide information on service, caregiving, self-care assistive technology and well-being Hub-and-spoke model for caregiver support, instead of having caregivers be supported through services accessed by care recipients. NCSS to pilot the model together with service providers. To assign one case worker for each PWD, for his/her entire lifetime To integrate various secondary caregivers such as social workers and medical personnel with primary caregivers To consider establishing dedicated Caregiver Spaces as neighbourhood CCs for caregivers' travelling convenience, and have CCs be touchpoints for access to SG Enable's information & advice on caregiver support services - a municipal service system
Caregivers Alliance Provides information, referrals, skills training and other support services
Caregiver Training Courses by VWOs and KKH/NUH Under the Caregiver Service Matrix, caregiver training and education are provided by 17 organisations as of 02 August 2018	Some courses that caregivers are interested in attending are only open to social service professionals Especially for low-income families, some programmes are unaffordable due to high costs of service and comparatively low levels of subsidies	Training on strengths-based approaches? - Helping parents and caregivers to support their children/wards in building strengths and abilities as opposed to focussing on limitations and disabilities. Ask caregivers themselves how they would like to be supported, in relation to the relevance, usefulness and utilisation of training courses and care services EM3 (Recommendation 13): To provide more and affordable courses (e.g., higher level training), and modes of training that are accessible to caregivers; for NCSS and MSF to work with relevant agencies to improve coordination and outreach to caregivers For service providers to make training options aware to caregivers
Caregivers Training Grant $200 annual subsidy for caregivers, per care recipient, every financial year, to attend training
Handbooks Who Cares? Transforming The Caregiving Experience in Singapore , a design ethnography by NCSS and fuelfor Caregiving...The Journey Starts With You! by AWWA Caregiver Basics 101 by AIC

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