Disability/Caregiver Support

To change anything in this page, feel free to contribute directly or to propose revisions and amendments in the Discussion page. Use [square brackets] for anecdotes, comments or to raise questions.

Alternatively, inset them into this Google Doc: Section 4 Family & Caregivers

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]

Policy Advocacy

• [To insert, if any]
• [To insert, if any]

Actionable Opportunity Areas

• Future Care Planning Concept paper [From SGEnable Caregiver Coalition]
• [To insert, if any]

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 page 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. 

Theory of Change

• The TOC can be articulated this way: If caregivers have the requisite skills and knowledge to take care of their dependents; are physically & mentally healthy; have strong family & peer support; adequate financial & work support; and make long-term plans for when they pass on; then they will be able to sustain the provision of care.
• Put a different way, we can also say: There are 4 key pre-conditions for parents to provide quality caregiving for the long term: 1) Caregiving Knowledge & Skills; 2) Health & Well-being, 3) Family & Peer support, 4) Financial and Work Support, and 4) Future Care Planning

Programmes		Areas of Needs / Desired Outcomes
Information on services Caregiver Training	→	Caregiving Skills & Knowledge	↘
Respite	→	Health & Mental Well-Being	↘
		Family & Peer Support	→		→	Caregivers sustainably provide quality care
		Financial & Work Related Support	↗
					↗
				Future Care Planning

Areas of Needs / Desired Outcomes

[Note: Caregivers understandably conflate their needs with those of their dependents, such as education, employment and social inclusion. Those needs of people with disabilities are covered elsewhere in the linked wiki pages. The needs listed here are those that pertain to caregivers themselves.]

Caregiver Skills & Knowledge

• Desired Outcomes: [to insert]
• Synopsis: 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.

Information on services

• [insert]

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 because they feel responsible to look after their children.	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
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?]

Caregiver Training

• [to insert]

Programmes	Gaps	Ideas
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?]

Physical Health and Mental Well-being

• Desired Outcomes: [to insert]
• Synopsis: There are some community-based support services for caregivers, though caregivers have difficulty finding time to access them — they continue to report stress from care work, and the need for self-care.

Programmes	Gaps	Ideas
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

Respite Care

• Synopsis: 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."]

Family and Peer Support

• Desired Outcomes: [to insert]
• Synopsis: [to insert]

Conversations and planning so that larger family network can provide support to primary caregiver

[Insert information on peer support groups available. Care Carnival seems to have compiled a whole range]

[Lead: Kim Lan's study suggests that Malay families opt for sibling caregiving but not Chinese families]

Workplace and Financial Support

• Desired Outcomes:
• Synopsis: Financial services such as tax reliefs, training subsidies and grants/concessions are available, though relative to the total expenses required to support a child/person with disability, it may not be enough.

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
Home Caregiving Grant Replaced the Foreign Domestic Worker (FDW) Grant from October 2019.  $200 monthly cash payout to support your loved ones with at least permanent moderate disability, i.e. always require some assistance to perform 3 or more Activities of Daily Living (ADLs).   This grant can be used to defray the costs of caregiving expenses, such as the costs of eldercare and caregiver support services in the community, or hiring of a Foreign Domestic Worker (FDW).	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
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		Can we quantify how much financial schemes alleviate total expenses for caregiving? See Chia Ngee Choon’s op-ed for example
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
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

Future Care Plans

• Although long-term care planning services exist, caregivers worry about the lack of supply of such services and the lack of options beyond loved ones in residential homes.
• [To Do: Contact Lau Kim Lan and integrate her findings: who recently completed a SUSS MA project on Needs and Concerns of Caregivers of Persons with Special Needs]
• Synopsis: Current legacy planning tools mainly focused on financial issues only; but they continue to have independent living and social inclusion needs which the tools by themselves cannot address.

[From Kim Lan's Study]

• Parents worried about financial support, financial management, disbursement of funds for medical purposes whenever in need and that the child's desired and needs are respected and fulfilled. Also concerns about independent living skills and socially included.(To cite Kim Lan; use of surveys to caregivers, n=102).
• A proportion also undecided on arrangements and do not know what to do and need guidance [To cite Kim Lan. Anecdote: She has heard of caregivers say this: "I'll kill my child first then kill myself]]
• She also has a list of ideas form the caregivers: monitoring authority to ensure that trustee carry out duties, support group for child, alumni of SPED, befrienders in neighbourhood; more hostels & homes. Community network around PWDs.
• MSF, NCSS goes to SSAs to get feedback, so one step removed from caregivers themselves
• Kim Lan: "We do not plan people's life in the office, we need to go to the ground and engage them"

EXISTING RESOURCES	GAPS AND THEIR CAUSES	POSSIBLE SOLUTIONS
Information on the following legacy planning tools: SNTC SNSS Writing a Will Deputyship at Family Justice Court LPA under Mental Capaicty Act	Caregiver awareness of legacy planning tools may be limited [check with Kim Lan's data]	Help SSAs who already service caregivers get the information out there.
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 Funds they are able to set aside not enough [To cite Kim Lan, she has specific figures cut by their household income. Anecdote from SNTC manager that they need to put aside $1mil, which is out of reach for many]	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.
	Current Adult Homes & Hostels not enough capacity(?)