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Home-based or residential care in the EU: issues … problems

Home-based or residential care in the EU: issues … problems. ( FERPA Executive Committee, Brussels, 29 October 2013 ). 1. Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07/ +32/(0) 477 98 05 33 - e-mail: lourdellehenri@gmail.com. This talk falls into three parts

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Home-based or residential care in the EU: issues … problems

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  1. Home-based or residential care in the EU: issues … problems (FERPA Executive Committee, Brussels, 29 October 2013) 1 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07/ +32/(0) 477 98 05 33 - e-mail: lourdellehenri@gmail.com

  2. This talk falls into three parts • First, a short review of the different forms of care provision for those with decreasing independence • Then a more extensive look at problems found to exist with residential and home-based care • And to conclude, a brief outline of possible lines of trade union action to be added to and filled out in this and future discussions 2 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  3. The situation in Europe: Forms of care provision for decreasing independence 3 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / + 32/(0) 477 98 05 33- e-mail: lourdellehenri@gmail.com

  4. Conditions for accessing care provision for decreasing independence • Access to care provision for decreasing independence (social care) is generally not age-dependent • EXCEPT, particularly in France (60) and the United Kingdom (65) • In the Netherlands, compulsory AWBZ insurance covers both the dependent elderly and those with a chronic disease or (physical or mental) disability. Payment of care by the dependency insurance scheme is determined by the duration of care needs • Germany’s Social Welfare Code (SGB) covers persons with a physical, mental or psychological illness or disability; the criterion is duration of care (longer than 6 months) and significant assistance in performing activities of everyday living • In Spain (Law of 14 December 2006) dependency is defined as needing assistance from one or more persons to perform the basic activities of living (due to age, illness or disability) • In Sweden, the approach is based not on dependency but on "needs" ... 4 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / + 32/(0) 477 98 05 33- e-mail: lourdellehenri@gmail.com

  5. Priority to home-based care... • Which is what people in all countries want ... • Given the generally negative connotation of “being taken into care”: when there is absolutely no alternative ... • Priority is given everywhere to home-based care (70% on average, OECD study) • Rather than “being put into care" (30%) ... • Belgium still has a relatively high rate of residential care (45% of cases) • In Sweden, since 2000. the trend has been to “community-based care": the number in residential care has declined by 12% in 8 years - 37% in residential care and 63% receiving home-based carein 2008 • In the Netherlands, the proportion of people over 80 in residential care has fallen from 50% in 1980 to 30% in 2008 ... 5 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / + 32/(0) 477 98 05 33- e-mail: lourdellehenri@gmail.com

  6. The key reasons… • As we have seen, to address what care recipients want • But also for reasons of cost control… • In all countries, the share of GDP (wealth) allocated to residential care > that allocated to supported home-based care in inverse proportion to the % of population concerned: • - Germany: 0.8% and 0.5% • - Spain: 0.5% and 0.4% • - France: 0.9% and 0.3% • - Luxembourg: 0.9% and 0.4% • - Belgium: 1.2% and 0.5%... 6 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / + 32/(0) 477 98 05 33- e-mail: lourdellehenri@gmail.com

  7. What forms of residential care provision?… • “Halfway house” provision: purpose-designed accommodation of the “care home” type providing services appropriate to residents’ needs (meals, care staff if needed, etc.) intended to avert isolation • These are found in the Netherlands, Sweden, Denmark, Belgium, etc… • “Day care centres”: Italy, Spain, United Kingdom… • Specialised provision, increasingly prevalent with age:2 countries stand out for the fact that more than 50% of people aged over 80 are in residential care (compared to 30 to 40% elsewhere) 7 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / + 32/(0) 477 98 05 33- e-mail: lourdellehenri@gmail.com

  8. The problems of “residential” care 8 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  9. A study (European Foundation) highlights the problems with accessing residential care: • - cost (60% of respondents) • - supply of places (61%) • - physical accessibility (distance, opening hours) 49% • - quality (44%) • But other, equally problematic issue, are to be found: • - risk of abuse • - staff numbers and qualifications 9 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  10. One big problem with residential care is its cost to the care recipient: • - In the United Kingdom: the average cost (2010) was 35,000 Euros/year and about 50,000 in a care home with nursing • - In Italy, the cost ranged from 1528 Euros/month to2702 Euros for a care home with nursing • - In Germany, the average cost of a retirement homeis 3300 euros per month, although much of that is paid for by long term care insurance • This results in an often high “co-payment” charge (excluding health expenditure) • - 31% of total expenditure in Germany • - 25% in Spain • - In France, the average cost oflong termcareis 1.5 x the average pension 10 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  11. What role for the private sector? • Currently, little to very little(labour-intensive sector) • - apart from France: in 2010, 15% of over-40s had long-term care insurance • - and Germany: 1.8% of long-term care spending is met from private insurance • Two types of insurance product: • - ”lump sum”: a fixed amount paid where the beneficiary meets the requirements for long-term care (France, United Kingdom with Immediate Care Plans and Immediate Needs Annuities) • - “compensatory”:compensation intended to cover (all or part) of spending on long-term care • But what does the future hold ? • - foreseeable increase in demand (partly dueto population trends) • - combined with the cap on public spending on care (financial and institutional…) 11 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  12. The second issue is accessibility (availability of beds) • Resulting in long waiting lists • Or unmet demand: • In the Netherlands, one in two applications goes unfulfilled • Ditto Sweden • Which paradoxically leads to certain States rethinking their policy of closing beds, as happened in the first decade of the 2000s 12 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  13. Problems with access stem to a great extent from Member States (self?) imposed budget constraints • Reflected in capped investment in new residential provision • These constraints also impact on the quality of life and care in residential provision • Connected with staff working conditions: fewer staff, less time to spare or to undergo training - 13 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  14. The risk of abuse - Data on its prevalence are sparse, but studies report that 20 to 30% of elderly residential and home care recipients mayhave suffered abuse (estimated at between 4 and 6%) - The forms of abuse in care homes: - Physicalviolence: the most visible because leaving most marks but not the most common (blows, burns, pushing over, restrictions on freedom of movement like bed pindown, etc…) • Psychologicalviolence: most common(bullying, insults, humiliation, etc…) • Financialviolence (denying the care recipient their own resources), also quite common (stealing money or goods, misappropriating a pension, anticipated inheritance, etc…) • Civic violence (abuse of authority): enforced putting into care, misuse of power of attorney, etc…) • Drug abuse (excessive administration of antipsychotics or conversely, denial of prescribed medicines…) • Neglect (abandonment of someone unable to care for themselves, deprivation of food, denial of care or hygiene, etc…) - 14 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  15. The causes… • Connected with how the institution works • The “house rules” which are often restrictive and ignore residents’ individuality (tastes, culture, lifestyles…), such as mealtimes, waking up times and bedtimes • The organisation of care or non-coordination of care • Often, residents and/or theirfamilies are not represented on the home’s governing bodies (meetings held in private)… • Connected with staff and chieflyaffecting caregivers • - under-staffing (excessive care workload, absenteeism, or profit maximisation…) • - unskilled staff(shortage of nurses…) • - lack of communication (families, residents and staff) • - stresses of work undervalued by society(→ absenteeism and staff turnover) • - “burn-out” (feelings of being worn-down, exhausted and unable to carry on due to excessive demands on energy, strength or resources) 15 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  16. Issues with home-based care • As has been said, in all countries, especially, • because of the budget issues mentioned, • but also because it is what older people and their families want, • The priority is home-based care e16 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  17. Who provides home-based care? • 80% of home-based care hours in the EU are provided by families or informal carers • 20 million carers work more than 20 hours a week • Most are women aged over 45 • But some are also immigrants, often illegal, undeclared female carers (In Italy: “badante” or “badanti”) e17 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  18. However, these “carers” lack… • Training, and so often (fear to …) make mistakes • They also lack “social recognition” (social security/employment rights, carers’ respite leave…) • Help • and forms of support • What linkages exist with the “formal” caregivers(nurses, social workers, doctors…)? e18 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  19. There is a risk of seeing this form of “family” caring dying out/changing … • The changing role of women in society • Shrinking family sizes • Changing family structures (divorce rates, blended families, moving for work…) • Increased female labour force participation • Pensions reform (e.g., increase in women’s contribution qualifying periods) • More people with more complex disabilities and needs … • …Requiring greater technical and social skills… e19 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  20. Possible lines of trade union inquiry and action 20 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  21. Obstacles to overcome for personal services workers … • It is a sector lacking in “visibility” • Resulting in low status and recognition for workers in this (female-dominated) sector • A sector (excluding medical care) seen as inherently low-skilled • Jobs usually low-paid • No career prospects • High turnover of seniors-in-charge • Predominantly non-standard employment: (very) short hours; (very short) fixed-term … • Duties assigned without reference to staff needs 21 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07/ +32/(0)477 98 05 33 - e-mail: lourdellehenri@gmail.com

  22. For home-based carers… • Not see it in terms of home-based versus “professional” carers, but as complementing one another (changing needs of care recipients…)? • Plan in reductions of duties/breaks for carers (the Netherlands has day or night attendance schemes, Sweden has respite care provision, for example …)? • Ensure minimum social/employment rights: caring tasks recognised for accruing pension entitlements, or as in Germany: long-term care insurance cover for sickness and even holidays up to 4 weeks and a maximum payment of €1,470 a year …? • Set up support schemes: like counselling groups, wellness activities, self-help groups…? 22 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/(0) 477 98 05 33 - e-mail: lourdellehenri@gmail.com

  23. By way of conclusion… • These are not fixed lines of inquiry but options that need to bediscussed • and are not by any meansexhaustive; they need adding to • They aim only: to set going and inform the debate on the basis of shared findings 23 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07/ + 32/(0) 477 98 05 33 - e-mail: lourdellehenri@gmail.com

  24. Thank you for your attention • Remarks?... • Questions?... • Reactions?... 24 Bd du Roi Albert II, 5 - B - 1210 Bruxelles Tel: +32/(0)2/224 04 07 / +32/ (0) 477 98 05 33 e-mail: lourdellehenri@gmail.com

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