Disability/Caregiver Support

Overview

Summary

Main concerns caregivers have:

• Caregivers continue to be concerned about the need for respite care. They reported a lack of opportunity for respite, especially when care recipients require round-the-clock care. At the same time, relying on respite care options can create a sense of guilt.
• 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. At the same time, self-care is not able to get on the priority list because caring for care recipient is perceived to be more important.
• 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.

Knowledge Gaps

[What is the number of informal caregivers caring for people with disabilities (e.g., % of PWDs who have caregivers), and their demographic profiles (age, SES, relation of care recipient to caregiver)?]

[Can we quantify how much financial schemes alleviate total expenses for caregiving? See Chia Ngee Choon’s op-ed for example]

Key Statistics & Figures

Definition of Caregivers

Caregivers of persons with disabilities are those who provide care to a person requiring support due to disability. Note that not all people with disabilities need constant care.

While this can include professional or formal caregivers such as social workers, doctors and nurses, the focus of this report will be on informal caregivers which include spouses, children, grandchildren, siblings and foreign domestic workers hired by their families:

• 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.

• [Is this landscape overly centred on ID/ASD??]

Size & Profile of Caregivers

Add Synopsis: something like "Caregivers are typically employed, and provide almost 7 hours of care per week and about 40% have done so for over a decade. They receive some form of support from family members or domestic workers, but some are sole caregivers. They are themselves ageing"

• 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. Caregiving in Singapore (Sep 2011)
• On average, caregivers provided around 6.8 hours of care per day in a typical week. Caregiving in Singapore (Sep 2011)
• 37% of caregivers reported that they had been providing care to their care recipients for over a decade.  Caregiving in Singapore (Sep 2011)
• Close to 74% of caregivers were employed. Caregiving in Singapore (Sep 2011)
• 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. Caregiving in Singapore (Sep 2011)
• 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. 

Areas of Needs

When you talk to caregivers, they understandably conflate their needs with those of their dependents, such as education, employment and social inclusion. Those needs are covered elsewhere in the linked wiki pages. The needs listed here are those that pertain to caregivers themselves.

Information on services

While referral, information and training resources are available, caregivers remain uneven in their knowledge about disability, and support received — they desire to access more rigorous training to better perform care.

Programmes	Gaps	Ideas
Diagnostic Agencies (e.g., hospitals)	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
NeuroDiverCity Gathers and shares inclusive services and resources that can be reviewed by parents	[Need to know how useful and utilised the website is to how many users]
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 [is this a significant number of caregivers? Why deny?] 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 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 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 [How many, and what kind?] 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	[How sufficient is this to cover the costs of training to care appropriately for a disabled care recipient?]
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	[Feedback/utility rate/dissemination data on these publications?]

Appropriate Respite Care

Home-based respite services are convenient, but are expensive and not always available. Centre-based services are routinely available, but their operating hours can be restrictive for working caregivers. Caregivers also differ in their utilisation and acceptance of respite care services.

Programmes	Gaps	Ideas
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 [Need to know what are the costs like to use these services] [Need to know utilisation rates of services by caregivers of PWDs]	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	[Info gap: What is the utilisation rate of these services?]
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	[Anecdote: "DAC operating hours are mainly till 4 or 5pm, thus caregivers who use DAC services find it difficult to find full-time work. 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	[Info gap: costs & utilisation of these services]
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	[Info gap: costs & utilisation of these services]
Respite services offered at selected day care centres and nursing homes under the ambit of AIC AIC page and E-Care Locator here.
Special Student Care Centres Provides subsidised before and after school care services for students with special needs aged 7 to 18 MINDS' First Special Student Care Centre to open in 2019
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	[Anecdote: "While caregivers welcome the opportunity for respite, some expressed concern about students’ well-being in taking care of and working with their children without parental supervision."]

Workplace and Financial Support

Programmes	Gaps	Ideas
Financial & Transport Support SG Enable Schemes Assistive Technology Fund Public Transport Concession Scheme Taxi Subsidy Scheme VWO Transport Subsidies MOE Special Educational Needs Fund (Polys and ITEs only)  Students with less severe physical impairments can claim up to $5,000 Students with less severe visual and/or hearing impairments can claim up to $25,000. Students with high-needs (physical / visual / hearing impairments) can claim up to $70,000 (case by case basis). S$675,000 has been disbursed to benefit more than 120 students MOE has announced that this fund will be extended to learning and language difficulties such as dyslexia, or social and behavioural difficulties like Autism Spectrum Disorder with a cap of $5,000 Edusave Grants and Edusave Pupils Fund SPED Financial Assistance Scheme NatSteel-SPD Education Programme	High transport costs Some students with disabilities have physical impairments which make independent utilisation of public transport problematic for them Parent availability to transport students is not always possible, particularly where both parents work Costs still high for lower-income people with disabilities	Increase the means testing of Assistive Technology Fund to cover more persons with disabilities from lower-middle income households