Difference between revisions of "Disability/Caregiver Support"
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− | + | <big>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.</big> | |
− | + | Alternatively, inset them into this Google Doc: [https://docs.google.com/document/d/1StcQ-ahpD4cXFoRvrK9xdLE8o2HptKGj8j0pUhLQaxo/edit#heading=h.v72u2qxjom9g Section 4 Family & Caregivers] | |
− | + | ==Overview== | |
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− | === | + | ===Summary=== |
− | + | Main concerns caregivers have: | |
− | < | + | *Caregivers continue to be concerned about the need for respite care<ref name=":122">https://www.msf.gov.sg/policies/Disabilities-and-Special-Needs/Documents/Enabling%20Masterplan%203%20(revised%2013%20Jan%202017).pdf</ref>. They reported a lack of opportunity for respite, especially when care recipients require round-the-clock care<ref name=":16">https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1007&context=lien_reports</ref>. At the same time, relying on respite care options can create a sense of guilt. |
+ | *Caregivers expressed the concern that they require self-care<ref name=":1222">https://www.msf.gov.sg/policies/Disabilities-and-Special-Needs/Documents/Enabling%20Masterplan%203%20(revised%2013%20Jan%202017).pdf</ref>. Stress from caregiving, along with increased time spent on care work affects caregivers' personal health and well-being<ref name=":1222" />. 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<ref name=":1223">https://www.msf.gov.sg/policies/Disabilities-and-Special-Needs/Documents/Enabling%20Masterplan%203%20(revised%2013%20Jan%202017).pdf</ref>.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=== | |
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− | * | + | *[https://docs.google.com/document/d/1J81EhACUFYRxIXhdzBnB9WFdd2RK0o6cVnj64a2EaA0/edit Future Care Planning Concept paper] [From SGEnable Caregiver Coalition] |
+ | *[To insert, if any] | ||
− | == | + | ==Key Statistics & Figures== |
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− | + | ===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 [https://www.msf.gov.sg/publications/Pages/The-Survey-on-Informal-Caregiving.aspx ''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 ''[https://www.duke-nus.edu.sg/care/wp-content/uploads/A-Profile-of-Older-Caregivers-in-Singapore.pdf 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. | ||
− | === Information on services | + | *'''[Is this landscape overly centred on ID/ASD??]''' |
− | '''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. | + | |
+ | ===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<ref name=":142">https://www.straitstimes.com/singapore/singapores-caregiver-crunch</ref>. | ||
+ | *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<ref name=":152">https://www.singstat.gov.sg/-/media/files/publications/society/ssnsep11-pg12-14.pdf</ref>. [https://www.singstat.gov.sg/-/media/files/publications/society/ssnsep11-pg12-14.pdf Caregiving in Singapore (Sep 2011)] | ||
+ | *On average, caregivers provided around 6.8 hours of care per day in a typical week. [https://www.singstat.gov.sg/-/media/files/publications/society/ssnsep11-pg12-14.pdf Caregiving in Singapore (Sep 2011)] | ||
+ | *37% of caregivers reported that they had been providing care to their care recipients for over a decade. [https://www.singstat.gov.sg/-/media/files/publications/society/ssnsep11-pg12-14.pdf Caregiving in Singapore (Sep 2011)] | ||
+ | *Close to 74% of caregivers were employed. [https://www.singstat.gov.sg/-/media/files/publications/society/ssnsep11-pg12-14.pdf 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. [https://www.singstat.gov.sg/-/media/files/publications/society/ssnsep11-pg12-14.pdf Caregiving in Singapore (Sep 2011)] | ||
+ | *[https://www.aic.sg/sites/aicassets/AssetGallery/Press%20Release/Press%20Release%20-%20Caregiver%20Symposium%20FINAL.pdf 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 | ||
+ | |||
+ | {| class="wikitable" | ||
+ | !Programmes | ||
+ | ! | ||
+ | ! colspan="5" |Areas of Needs / Desired Outcomes | ||
+ | |- | ||
+ | |[http://wiki.socialcollab.sg/index.php/Disability/Caregiver_Support#Information_on_services Information on services] | ||
+ | |||
+ | Caregiver Training | ||
+ | |→ | ||
+ | |[http://wiki.socialcollab.sg/index.php/Disability/Caregiver_Support#Caregiver_Skills_.26_Knowledge Caregiving Skills & Knowledge] | ||
+ | |↘ | ||
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+ | |- | ||
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+ | | | ||
+ | | | ||
+ | |- | ||
+ | |[http://wiki.socialcollab.sg/index.php/Disability/Caregiver_Support#Respite_Care Respite] | ||
+ | |→ | ||
+ | |[http://wiki.socialcollab.sg/index.php/Disability/Caregiver_Support#Physical_Health_and_Mental_Well-being Health & Mental Well-Being] | ||
+ | |↘ | ||
+ | | | ||
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+ | |- | ||
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+ | |- | ||
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+ | |[http://wiki.socialcollab.sg/index.php/Disability/Caregiver_Support#Family_and_Peer_Support Family & Peer Support] | ||
+ | |→ | ||
+ | | | ||
+ | |→ | ||
+ | |Caregivers sustainably provide quality care | ||
+ | |- | ||
+ | | | ||
+ | | | ||
+ | | | ||
+ | | | ||
+ | | | ||
+ | | | ||
+ | | | ||
+ | |- | ||
+ | | | ||
+ | | | ||
+ | |[http://wiki.socialcollab.sg/index.php/Disability/Caregiver_Support#Workplace_and_Financial_Support Financial & Work Related Support] | ||
+ | |↗ | ||
+ | | | ||
+ | | | ||
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+ | |- | ||
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+ | | | ||
+ | | | ||
+ | | | ||
+ | |↗ | ||
+ | | | ||
+ | |- | ||
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+ | |[http://wiki.socialcollab.sg/index.php/Disability/Caregiver_Support#Future_Care_Plans 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] | ||
{| class="wikitable" | {| class="wikitable" | ||
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|- | |- | ||
|'''[https://allin.guide/ All In]''' (in development) | |'''[https://allin.guide/ 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 | *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 | ||
| | | | ||
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*Knowledge and level of assistance received by caregivers differ depending on the experience and knowledge of providers they meet<ref name=":02">National Volunteer and Philanthropy Centre (NVPC). (2017). Issues faced by people with disabilities in Singapore. Retrieved from <nowiki>https://www.nvpc.org.sg/resources/report-on-issues-faced-by-people-with-disabilities-in-singapore</nowiki></ref> | *Knowledge and level of assistance received by caregivers differ depending on the experience and knowledge of providers they meet<ref name=":02">National Volunteer and Philanthropy Centre (NVPC). (2017). Issues faced by people with disabilities in Singapore. Retrieved from <nowiki>https://www.nvpc.org.sg/resources/report-on-issues-faced-by-people-with-disabilities-in-singapore</nowiki></ref> | ||
*Some caregivers deny that children have special needs '''[is this a significant number of caregivers? Why deny?]''' | *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.<ref>http://www.asiaone.com/health/plight-caregivers-disabled-children</ref> | + | *Some caregivers reject support services for those in their charge because they feel responsible to look after their children.<ref>http://www.asiaone.com/health/plight-caregivers-disabled-children</ref> |
| | | | ||
*EM3 (Recommendation 13) | *EM3 (Recommendation 13) | ||
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*To integrate various secondary caregivers such as social workers and medical personnel with primary caregivers<ref name=":02" /> | *To integrate various secondary caregivers such as social workers and medical personnel with primary caregivers<ref name=":02" /> | ||
*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 | *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 | ||
+ | |- | ||
+ | |'''[https://www.cal.org.sg/ Caregivers Alliance]''' | ||
+ | *Provides information, referrals, skills training and other support services | ||
+ | | | ||
+ | | | ||
+ | |- | ||
+ | |'''Handbooks''' | ||
+ | *''[https://www.ncss.gov.sg/Press-Room/Publications/Detail-Page?id=Who-Cares Who Cares? Transforming The Caregiving Experience in Singapore]'' , a design ethnography by NCSS and fuelfor | ||
+ | *[https://www.awwa.org.sg/awwa_content/uploads/2017/08/AWWACaregiverService_CaregiversHandbook_English_V1.pdf ''Caregiving...The Journey Starts With You!''] by AWWA | ||
+ | *''[https://www.sgenable.sg/uploads/2013/09/Caregivers-Basics-101.pdf Caregiver Basics 101]'' by AIC | ||
+ | |'''[Feedback/utility rate/dissemination data on these publications?]''' | ||
+ | | | ||
+ | |} | ||
+ | |||
+ | ====Caregiver Training==== | ||
+ | |||
+ | *[to insert] | ||
+ | |||
+ | {| class="wikitable" | ||
+ | |- | ||
+ | | style="width: 33.3%;" |'''<big>Programmes</big>''' | ||
+ | | style="width: 33.3%;" |'''<big>Gaps</big>''' | ||
+ | | style="width: 33.3%;" |'''<big>Ideas</big>''' | ||
|- | |- | ||
|'''[https://www.cal.org.sg/ Caregivers Alliance]''' | |'''[https://www.cal.org.sg/ Caregivers Alliance]''' | ||
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| | | | ||
|} | |} | ||
− | === | + | |
− | '''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. | + | ===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. | ||
+ | |||
+ | {| class="wikitable" | ||
+ | | style="width: 33.3%;" |'''<big>Programmes</big>''' | ||
+ | | style="width: 33.3%;" |'''<big>Gaps</big>''' | ||
+ | | style="width: 33.3%;" |'''<big>Ideas</big>''' | ||
+ | |- | ||
+ | |'''[https://www.sgenable.sg/uploads/Caregiver%20Support%20Service%20Matrix.pdf Community Counselling/Emotional Support Services]''' | ||
+ | *14 agencies provide these services as of 02 August 2018 | ||
+ | | rowspan="4" |Caregivers reported a lack of opportunity for respite, especially when care recipients require round-the-clock care.<ref>https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1007&context=lien_reports</ref> | ||
+ | | rowspan="4" | | ||
+ | *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 | ||
+ | |- | ||
+ | |'''[https://www.sgenable.sg/uploads/Caregiver%20Support%20Service%20Matrix.pdf Community Support Groups]''' | ||
+ | *13 agencies provide these services as of 02 August 2018 | ||
+ | |- | ||
+ | |'''[https://www.sgenable.sg/uploads/Caregiver%20Support%20Service%20Matrix.pdf Caregiver Activities in the Community]''' | ||
+ | *14 agencies provide these services as of 02 August 2018 | ||
+ | |- | ||
+ | |'''[http://www.cwa.org.sg/get-help/counselling 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. | ||
+ | |||
{| class="wikitable" | {| class="wikitable" | ||
|- | |- | ||
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*'''[Need to know utilisation rates of services by caregivers of PWDs]''' | *'''[Need to know utilisation rates of services by caregivers of PWDs]''' | ||
|To consider commercialising caregiving (e.g. piecemeal/gig caregiving services) | |To consider commercialising caregiving (e.g. piecemeal/gig caregiving services) | ||
+ | |||
*In light of an ageing population, decreasing family sizes and caregiver fatigue | *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 | *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 | ||
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|- | |- | ||
|Respite services offered at selected day care centres and nursing homes under the ambit of AIC | |Respite services offered at selected day care centres and nursing homes under the ambit of AIC | ||
+ | |||
*AIC page and E-Care Locator [https://www.silverpages.sg/care-services/Respite%20Care '''here''']. | *AIC page and E-Care Locator [https://www.silverpages.sg/care-services/Respite%20Care '''here''']. | ||
| | | | ||
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|} | |} | ||
− | === Workplace and Financial Support === | + | ===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. | ||
+ | |||
{| class="wikitable" | {| class="wikitable" | ||
+ | | style="width: 33.3%;" |'''EXISTING RESOURCES''' | ||
+ | | style="width: 33.3%;" |'''GAPS AND THEIR CAUSES''' | ||
+ | | style="width: 33.3%;" |'''POSSIBLE SOLUTIONS''' | ||
+ | |- | ||
+ | |'''[https://www.silverpages.sg/CTG Caregivers Training Grant]''' | ||
+ | *$200 annual subsidy for caregivers, per care recipient, every financial year, to attend training | ||
+ | | | ||
+ | | | ||
+ | |- | ||
+ | |'''[https://www.aic.sg/financial-assistance/Home%20Caregiving%20Grant%20(HCG) 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). | ||
+ | | rowspan="2" | | ||
+ | *Even after subsidies, the remaining cost to hire an FDW is still more than many low-income families can afford<ref name=":163">https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1007&context=lien_reports</ref> | ||
+ | *Employers must be of sufficient mental capacity to hire an FDW, and cannot have a disability that impairs mental capacity to this degree<ref name=":163" /><ref>https://www.mom.gov.sg/passes-and-permits/work-permit-for-foreign-domestic-worker/eligibility-and-requirements/employer-requirements</ref> | ||
+ | | | ||
+ | |- | ||
+ | |'''[https://www.silverpages.sg/financial-assistance/Foreign%20Domestic%20Worker%20(FDW)%20Levy%20Concession Foreign Domestic Worker Levy Concession]''' | ||
+ | *Lets families pay a monthly foreign domestic worker levy of just $60, instead of $265 | ||
+ | | | ||
+ | |- | ||
+ | |'''[https://www.sgenable.sg/uploads/Caregiver%20Support%20Service%20Matrix.pdf 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 [https://www.straitstimes.com/opinion/how-to-nudge-couples-to-have-more-kids op-ed] for example | ||
+ | |- | ||
+ | |'''Additional Financial Support for Care Recipients with Disabilities''' | ||
+ | *'''[https://www.sgenable.sg/pages/content.aspx?path=/schemes/equipment-technology-home-retrofit/assistive-technology-fund/ Assistive Technology Fund (ATF)]''' | ||
+ | *(from 2020) '''[https://www.moh.gov.sg/careshieldlife/about-careshield-life CareShield Life]''' | ||
+ | *'''[https://www.moh.gov.sg/careshieldlife/about-eldershield ElderShield]''' | ||
+ | *'''[https://www.silverpages.sg/SMF Senior's Mobility and Enabling Fund]''' | ||
+ | *'''[https://www.msf.gov.sg/Comcare/Pages/default.aspx ComCare]''' | ||
+ | | | ||
+ | | | ||
|- | |- | ||
− | + | |'''[https://www.iras.gov.sg/IRASHome/Individuals/Locals/Working-Out-Your-Taxes/Deductions-for-Individuals/Qualifying-Child-Relief--QCR--/-Handicapped-Child-Relief--HCR-/ 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''' | |'''Financial & Transport Support''' | ||
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*[http://www.spd.org.sg/spd-education-programme NatSteel-SPD Education Programme] | *[http://www.spd.org.sg/spd-education-programme 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" | ||
+ | |||
+ | {| class="wikitable" | ||
+ | | style="width: 33.3%;" |'''EXISTING RESOURCES''' | ||
+ | | style="width: 33.3%;" |'''GAPS AND THEIR CAUSES''' | ||
+ | | style="width: 33.3%;" |'''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. | ||
+ | |- | ||
+ | |'''[https://www.sgenable.sg/pages/content.aspx?path=/caregiver-support/assisted-deputyship-2/ 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 | ||
+ | |- | ||
+ | |[https://www.sntc.org.sg/Pages/Home.aspx '''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 ([http://www.straitstimes.com/singapore/few-set-up-trust-fund-to-care-for-kin-with-disabilities 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<ref name=":1225" /> | ||
+ | *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. | ||
+ | |- | ||
+ | |'''[https://www.sntc.org.sg/Pages/snss_about.aspx?MainMenu=Special%20Needs%20Savings%20Scheme 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(?) | ||
+ | | | ||
|} | |} | ||
− | == | + | ==References== |
<references /> | <references /> |
Latest revision as of 01:28, 2 October 2020
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
Contents
Overview
Summary
Main concerns caregivers have:
- Caregivers continue to be concerned about the need for respite care[1]. They reported a lack of opportunity for respite, especially when care recipients require round-the-clock care[2]. At the same time, relying on respite care options can create a sense of guilt.
- Caregivers expressed the concern that they require self-care[3]. Stress from caregiving, along with increased time spent on care work affects caregivers' personal health and well-being[3]. 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[4].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.
- See The Survey on Informal Caregiving by MCYS
- [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[5].
- 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[6]. 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 |
|
NeuroDiverCity
|
[Need to know how useful and utilised the website is to how many users] | |
All In (in development)
|
||
SG Enable
|
|
|
Caregivers Alliance
|
||
Handbooks
|
[Feedback/utility rate/dissemination data on these publications?] |
Caregiver Training
- [to insert]
Programmes | Gaps | Ideas |
Caregivers Alliance
|
||
Caregiver Training Courses by VWOs and KKH/NUH
|
| |
Caregivers Training Grant
|
[How sufficient is this to cover the costs of training to care appropriately for a disabled care recipient?] | |
Handbooks
|
[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
|
Caregivers reported a lack of opportunity for respite, especially when care recipients require round-the-clock care.[11] |
|
Community Support Groups
| ||
Caregiver Activities in the Community
| ||
Caregiving Welfare Association - Caregiver Counselling Services
|
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
|
|
To consider commercialising caregiving (e.g. piecemeal/gig caregiving services)
|
Drop-in Disability Programme
|
[Info gap: What is the utilisation rate of these services?] | |
Day Activity Centres
|
[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)
|
|
|
Adult Disability Homes (Short-Term Respite)
|
[Info gap: costs & utilisation of these services] | |
Respite services offered at selected day care centres and nursing homes under the ambit of AIC
|
||
Special Student Care Centres
|
||
One Child One Skill
|
[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
|
||
Home Caregiving Grant
|
||
Foreign Domestic Worker Levy Concession
|
||
Community Long Term Care / Financial Planning Services
|
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 | ||
Handicapped Child Relief (HCR)
|
| |
Financial & Transport Support
|
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:
|
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)
|
|
|
Special Needs Trust Company (SNTC) Trust
|
|
EM3 (Recommendation 14)
|
Special Needs Savings Scheme
|
||
Current Adult Homes & Hostels not enough capacity(?) |
References
- ↑ https://www.msf.gov.sg/policies/Disabilities-and-Special-Needs/Documents/Enabling%20Masterplan%203%20(revised%2013%20Jan%202017).pdf
- ↑ https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1007&context=lien_reports
- ↑ 3.0 3.1 https://www.msf.gov.sg/policies/Disabilities-and-Special-Needs/Documents/Enabling%20Masterplan%203%20(revised%2013%20Jan%202017).pdf
- ↑ https://www.msf.gov.sg/policies/Disabilities-and-Special-Needs/Documents/Enabling%20Masterplan%203%20(revised%2013%20Jan%202017).pdf
- ↑ https://www.straitstimes.com/singapore/singapores-caregiver-crunch
- ↑ https://www.singstat.gov.sg/-/media/files/publications/society/ssnsep11-pg12-14.pdf
- ↑ 7.0 7.1 7.2 https://www.msf.gov.sg/policies/Disabilities-and-Special-Needs/Documents/Enabling%20Masterplan%203%20(revised%2013%20Jan%202017).pdf
- ↑ 8.0 8.1 8.2 8.3 National Volunteer and Philanthropy Centre (NVPC). (2017). Issues faced by people with disabilities in Singapore. Retrieved from https://www.nvpc.org.sg/resources/report-on-issues-faced-by-people-with-disabilities-in-singapore
- ↑ http://www.asiaone.com/health/plight-caregivers-disabled-children
- ↑ https://www.msf.gov.sg/publications/Pages/The-Survey-on-Informal-Caregiving.aspx
- ↑ https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1007&context=lien_reports
- ↑ https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1007&context=lien_reports
- ↑ 13.0 13.1 https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1007&context=lien_reports
- ↑ https://www.mom.gov.sg/passes-and-permits/work-permit-for-foreign-domestic-worker/eligibility-and-requirements/employer-requirements
- ↑ https://www.straitstimes.com/singapore/more-funding-help-for-polytechnic-ite-students-with-special-needs
- ↑ Cite error: Invalid
<ref>
tag; no text was provided for refs named:1225