1. Presented at IRPP Montreal, PQ April 3, 2009

2. Family/friend Caregivers: Often invisible and unrecognized but critical ingredients in the maintenance and growth of the aging population Dilemma: Caregivers need to be recognize as individuals with rights to their own services and supports. At the same time public policy will need to be targeted to caregivers who provide a certain amount of care (not help).

3.  1 st Reality Check: ◦ The majority of care provided to older people in the community is by family and friends – assumptions of their continued availability is problematic.  2 nd Reality Check: ◦ System of supports for family/friend caregivers is limited and inconsistent; their role as caregiver, ambiguous.  3 rd Reality Check ◦ An increasing proportion of the Canadian labour force are caregivers to older persons –resulting in short and long term consequences.  4 th Reality Check ◦ Reduced availability of family and changing values in purchasing care will increase demand for publically and privately-funded home care programs and services – Can this demand be met?

4. Income Security – Many caregivers incurred extra expenses, other countries have financial support policies (beyond tax credits). Health/Home care services – Caregiver needs are rarely assessed – their needs are diverse. Respite, education and support are needed. Labour policy – Employed caregivers face short and long term consequences on income, career advancement, and productivity. Human Resource Policy – Increased demand for paid workers to provide support and personal care

5. Availability of Family/Friend Caregivers

6.  Issue: ◦ Family/friends caregivers are the reason why home care is cost-effective yet supply and demand changing.  Issue: ◦ Limited access to supports for these caregivers  Income security limited eg financial support, CPP, taxation policies (Reality #1)  Issue: Diversity of family caregivers – there is no one solution but a range of responses that are needed  Solutions:  Review international policies on financial support for caregivers:

7. Proportion of females 65+ with no surviving children, among those living in the community, by age group, 2001-2051. Supply: Availability of surviving children 65+ 85+ Source: Carrière, Y.; Keefe, J.; Légaré, J.; Lin, X.; Rowe, G. (2007).

8. In long term - decreased number of children. Narrowing mortality gap means older spouses caring. In short term more adult children affected by: Women’s participation in the paid labour force Mobility Patterns  In rural areas – Out-migration of youth In urban areas - Increased cultural diversity In rural areas access to supportive services Length of care and Sustainability

9. 9 + 79 % +104% +101 % + 90 +142% +111% Variation 2006-2031 (%) Women continue to be greatest number of receivers of informal and formal support but their rate of increase is less than men Source: Keefe, J. & Légaré, J. (unpublished data)

10. Limited Supports for Family/Friend Caregivers

11.  Diversity in support: ◦ Public home care programs vary in supportive services for family/friend caregivers ◦ Most can only be accessed through the client  Shift to Community Care  Reduced hospital stays  Increased complexity of care and expectations/ burden on family/friend caregivers.  Caregiver needs not assessed  System Challenges/opportunities` ◦ Continuing care policies are under P/T jurisdiction ◦ Public continuing care programs becoming increasing used for acute care substitution ◦ Formal support for chronic care privatized and not regulated

12. Where can I go for support? Federal Compassionate Care Benefit Tax relief Private Home support services Respite Community Voluntary organizations Advocacy and support groups Provincial Home care, respite Tax relief Education, information, support Federal - Issues CCB limited scope Tax Credits are non- refundable Provincial - Issues Varies by province and region Eligibility, entitlement ↑ Acute HC Private - Issues Limited to those who can afford these services Location Community - Issues Do not exist in all regions Rural/urban

13. Federal : Taxation and EI  Reviewed financial support policies in 10 countries (direct, indirect & labour) ◦ Review policies for compensating caregivers and assess their applicability to Canada ◦ Understand strengths and limitations of other countries approaches ◦ Assess how they might be implemented in Canada

14.  Direct Services  Enhanced Respite/Home Care  Education/Information/Support  Direct Financial Support ◦ Allowances paid to caregiver (less extent wages) ◦ Allowances paid to care receiver to pay caregiver ◦ Reimbursement of expenses  In Direct Financial Support ◦ Taxation (benefits, exemptions ) ◦ Pension (Credits, exemptions) ◦ Social security (workers comp, vacation, sick days) Keefe, Glendinning & Fancey (2008). In A. Martin Matthews & J. Philips (Eds) Blurring the Boundaries

15.  Caregiving is a global issue  Countries have “carer” strategies or comprehensive programs *  New Zealand Strategy for Careers (Jan. 2008)  United Kingdom - National Strategy for Carers (Renewed June 2008)  Australia - Home and Community Care Program HCAA (1992) - National Respite for Carers Program (1996)  US Amendment to Older Americans Act (2000) established the National Family Caregiver Support Program  Some recognize caregivers as clients  Australia’s HCAA recognized caregiver’s as clients in their own right  United Kingdom’s Carers (Recognition and Services) Act (1995) gave caregivers the right to an assessment of their needs.  England & Wales – 2004 The Caring Equal Opportunities Act gave caregivers more choice and opportunity. * See http://www.msvu.ca/mdcaging/policyprofiles.asp for more information on international caregiver financial compensation policies.

16. ~$90 CAD every two weeks to caregiver (+$600 annual bonus) Available to all caregivers who meet care requirements for child or adult (including elderly) Not taxable “Recognition” rather than income replacement CG may be eligible for Carer Payment and direct services Germany LTC insurance Home Care/ Domiciliary Care Benefit Eligible clients choose money or services or combination 3 payment levels based on CR needs $318 to $1033 per month Paid to CR to pay CG – but no evidence of how it is used Additional payment available for 1 month Stand-In Care Pension and accident insurances premiums covered All 10 Policy Profiles are available at: www.msvu.ca/mdcaging/policyprofiles.asp

17. 1. Introducing Money into the care relationship 2. Supportive or negatively affecting women 3. Consumer Choice and empowerment 4. Woodwork effect – costs

18. Employed caregivers

19.  In 2002, more than 1.4 million Canadians age 45 and older combined paid employment and care to older adults, and most caregivers worked full-time (Walker & Fast, 2005) ◦ Issues: Economic Costs - Short and long term consequences, lost productivity; ◦ Non economic Costs: Health ◦ Policy Review: International review of public policies in labour similar to Canada’s EI Compassionate Care ◦ Solutions:  Proposed labour policies to support employed caregivers

20. Percentage of caregivers 45 years and over who experienced employment consequences, 2002  Consequences to employed caregivers

21. CanadaSwedenJapanCaliforniaPolicy Compassionate Care Benefit Care Leave Act Family Care Leave Paid Family Care Leave Benefit Nature Gravely ill Terminal Dependent care All reasons Length Average use 6 wks + 2wks waiting 4.3 weeks 60 days 10 days 93 days N/A 42 days 33.6 days Benefit Rate* Average $ # Beneficiaries 55%$1,425175580%$1001955040%$2,532498655-60%$2549 16,500 (12%) Eligibility Parent, spouse, or child (expanded in 06 to most family) Employee must have accumulated 600 insured hours in past 52 weeks Family, friends, or neighbours Employee must be contributing to sickness benefits Extended family who co- reside** with the employee Employee must have worked more than 11 days in a month for more than 12 months Parent, spouse, or child Employee must be contributing to State Disability Insurance benefits

22. Employees Caregivers Employees Recognize that any policy occurs in a particular context: Home and continuing care services Other income security and labour standards important

23. National policies all caregivers National policies employed caregivers Workplace policies Percentage of Caregivers Who are eligible

24.  Direct Services  Enhanced Respite/Home Care  Education/Information/Support  Direct Financial Support ◦ Allowances paid to caregiver (less extent wages) ◦ Allowances paid to care receiver to pay caregiver ◦ Reimbursement of expenses  In Direct Financial Support ◦ Taxation (benefits, exemptions ) ◦ Pension (Credits, exemptions) ◦ Social security (workers comp, vacation, sick days) Keefe, Glendinning & Fancey (2008). Labour Unpaid Leaves Paid Leaves for family Paid Leaves for compassionate/chronic care

25. Challenges in accessing formal services

26.  Reality Check: Reduced availability of family and changing values in purchasing care will increase demand ◦ Issue: Recruitment and retention of human resources result in competition for resources within continuing care. ◦ Issue: Working conditions, compensation education and training diverse across Canada  Human resources to meet growing demands ◦ Less attention given to continuing care/care workers

27. Retrieved from Women on Home Care Published by the Canadian Women’s Health Network

28. +87 % +124 % +100 %

29.  Compensation ◦ Low wages, wage parity, limited benefits, travel  Education and training ◦ Standardized training, entry requirements, skills upgrading, meeting current demands/needs  Quality assurance ◦ Standards for home care programs, employees and continuity of care  Working conditions ◦ Work loads, stress, safety, job insecurity, “value”

30.  Income Security  Direct Financial Support:  Caregiver Payment/Allowance  Pension Schemes  reduced penalty for dropout  State pays pension credits  Taxation System  Inclusion of care expenses  Expansion of Tax Credits  Social Security  State pays employment/sickness insurance  Health/Continuing care  Respite care/Home Care  Recognize caregivers as a client  Assess caergiver needs  Employment/Labour  Leave policy – employment insurance  Labour Standards policy  Health Human Resources `  Improve working conditions  Training and Standards  Focus on Recruitment and retention POLICY DOMAINS

31.  Workplace policy directed to employees  National insurance for all employees  Direct support policy to all caregivers (including employees)  Increase direct service policy to support care in the community  Intersect of policy domains ◦ both financial support in multiple domains as well as services need to be considered. BUT WE CAN’T AFFORD IT… IT COSTS TOO MUCH…….

32. Cost (millions) Option 1: Provision of allowance ($2400 per yr/person) Option 2: Provision of respite (4 hours/week additional respite - $5200/yr) Option 3: Cost of average additional 3 months of an institution for CR $12000/yr) 2. Services 1. Compensation 3. Institutional Cost 3 months 5.7 billion 10.9 billion Keefe, J.; Légaré, J.; Carrière, Y. 2007. Developing new strategies to support future caregivers... Projections of need and their policy implications. Canadian Public Policy, 33, 65-80

33. Need to consider the ECONOMIC, SOCIAL, and HEALTH CARE Costs of NOT supporting caregivers.  BUT WE CAN’T AFFORD IT…  IT COSTS TOO MUCH…….