GUIDELINES FOR ESTIMATING LONG-TERM CARE EXPENDITURE IN THE JOINT 2006 SHA DATA QUESTIONNAIRE TABLE OF CONTENTS

Transcription

1 GUIDELINES FOR ESTIMATING LONG-TERM CARE EXPENDITURE IN THE JOINT 2006 SHA DATA QUESTIONNAIRE TABLE OF CONTENTS GUIDELINES FOR ESTIMATING LONG-TERM CARE EXPENDITURE IN THE JOINT 2006 SHA DATA QUESTIONNAIRE... 2 Introduction... 2 Main problems with the current data on long-term care expenditure... 3 Policy relevance... 3 Comprehensiveness... 4 Comparability... 5 General considerations for treatment of long-term care expenditure under SHA... 5 A functional approach to define the boundaries of long-term care... 7 Treatment of complex provider organisations... 7 Definitions... 8 Long-term nursing care (HC.3) and its subcomponents... 8 HC.R.6.1. Social services of Long term care (LTC other than HC.3)... 9 HC.R.7 Cash benefits related to sickness and disability Total long term care (including HC.R.6.1) Health services and goods delivered together with long-term care COMPONENTS OF LTC SPENDING Palliative care (end-of-life care) Long-term nursing care Personal care services Home help, care assistance and other help with IADL restrictions Services in support of informal (family) care Residential (care) services: retirement homes, old people homes, adapted/assisted living etc.14 Programmes of personal budgets and consumer-choice, care-allowances etc Further recommendations on estimating the boundary between HC.3 and HC.R

2 GUIDELINES FOR ESTIMATING LONG-TERM CARE EXPENDITURE IN THE JOINT 2006 SHA DATA QUESTIONNAIRE Introduction 1. A major requirement of producing comprehensive and internationally comparable data on total expenditure is the implementation of the boundaries of health care, that is, the application of a functional classification of health care (ICHA-HC) in a harmonised way. Among the most important factors that continue to affect comparability is the varying treatment of long-term nursing care (LTC) across countries. It has an effect on the overall magnitude of total health spending (and consequently on the health expenditure to GDP ratio), the public-private share of financing, as well as the breakdown by function and provider. Different estimation methods of long-term nursing care expenditure may affect total health expenditure by up to 10% or more. 2. Current differences in data on long term care expenditure reflect not only actual differences in the country-specific organisation of LTC services, but also differences in data availability and interpretation of the SHA Manual. Furthermore, several important questions are not addressed (or not in a sufficiently detailed way) in the SHA Manual. 3. Ongoing work on Refinement and extension of the International Classification for Health Accounts (ICHA) is expected to result in a revised functional classification including LTC. The purpose of these guidelines, therefore, is to provide interim guidance for the period until the revised ICHA becomes available. 4. An Electronic Discussion Group will be set up in January 2006, in order to facilitate the application of these guidelines and also to provide a medium for experts to contribute to the discussion on refinement of ICHA. 5. Improvements in comparability of data on LTC expenditure may require better co-ordination of reporting systems between various levels of government and administrations responsible for health and social services, including private initiatives of care provision. This could lead to new data sources in many countries. In addition, a time frame for, and the implementation of, internationally harmonised estimation methods will need to be agreed upon at a national level. 6. Studying the systems of long-term care and related statistics in Member countries, analysing the differences in long-term care expenditure and developing guidelines have already been key issues on the agenda of SHA work at the OECD Secretariat during the last few years. The LTC Study (OECD, 2005) under the OECD Health Project focused on long-term care as a component of total health expenditure. It has, however, been realised that a better understanding of differences across countries requires going beyond the boundaries of the health system. Therefore, the Health Data 2005 complementary data collection intended to collect basic information regarding key features of the availability of expenditure data on health and social care for the elderly and people with physical and mental impairments, regardless of whether a particular item is recorded in the current health or social 2

3 statistics in Member countries. The guidelines presented in this paper have been developed based on the results of these two projects, together with experiences from SHA implementations and a review of the international literature. 7. The following sections cover: a summary of the main problems with current data on LTC expenditure; a proposal for the treatment of health and social care components of LTC in the SHA framework; and a set of definitions, as well as guidance, for their application. Main problems with the current data on long-term care expenditure 8. Criteria of quality improvement for long-term care expenditure data can be brought under the following broad headings: Availability of data Reliability of data Timeliness Comprehensiveness of estimating total spending Consistency of hierarchy of sub-aggregates Comparability across countries and over time Transparency (estimation methods and deviations from ICHA) Policy-relevance and sensitiveness of indicator Data on long-term care expenditure require improvement in most of the criteria listed. Policy relevance 9. The effect of ageing on public spending (including health and social budgets) is a key policy issue. Among the main purposes of public policies are to ensure adequate income (through the pension system and social assistance) and to provide services to people who are limited in their ability to function independently on a daily basis. Although most of these people are elderly, the concept of LTC also includes services for younger people with physical and mental impairments and certain therapeutic patterns affecting youth and young adults [e.g. in lower income countries, AIDS affected]. From the point of view of public budgets, it is desirable to provide information concerning the total spending on services provided to dependent people 1 (with ADL and/or IADL restrictions). 10. Due to the fact that data collection for OECD Health Data and implementation of the SHA have been focused on the health system (with less attention paid to health-related expenditure), data on LTC expenditure cover only a part of the spending on services provided to dependent people (with ADL and/or IADL restrictions). In theory, data only cover expenditure on services that requires application of nursing knowledge and technology for caring for persons affected by chronic illness who require nursing care; caring for persons with health-related impairment, disability, and handicaps who require nursing care; and assisting patients to die with dignity. (Consequently, services for assisting 1 The term dependent people is used as a synonym for people with ADL and/or IADL restrictions (that is also includes persons with IADL restrictions only). 3

4 people with IADL restrictions only are, by definition, not included.) In fact, data currently reported in OECD Health Data and SHA-based health accounts include expenditure on social component of LTC (domestic services and accommodation for persons with IADL restrictions) to a varying extent across countries. (For more detail regarding OECD countries, see [DELSA/HEA/HA(2005)3]). 11. The SHA Manual, by including a category for reporting expenditure on health-related social care (HC.R.6: Administration and provision of social services in kind to assist living with disease and impairment) provides, by definition, a means for reporting ( below the line ) total long-term care expenditure that goes beyond the boundary of total health expenditure. The combined view on both the health and social spending components of long-term care would thus allow the provision of information on the health (HC.3) and the health-related (social) component (HC.R.6) of long term care expenditure and, as a sum of these components, total LTC expenditure. This information would be of great policy relevance and also needed for health expenditure projections. Comprehensiveness 12. To ensure comparability across countries, a major criterion of the SHA is comprehensiveness. The SHA Manual concerning health expenditure states: The SHA provides a comprehensive accounting framework for the whole field of health care activities. It is not limited to a specific range of public and private programmes, as is still the case in several countries National Health Accounts. In accordance to the functional approach, all programmes designed to provide health care or a substantial amount of health status enhancement by medical means should be included, whether labelled health care or not in national statistics. It is desirable to apply the criteria of comprehensiveness in a consistent way, that is, to utilise the capacity of the SHA as a comprehensive accounting framework for the whole field of activities (including health and social care) that are aimed to assist people who are limited in their ability to function independently on a daily basis over a relatively long period of time. 13. A chart on the major components of spending on services provided for the elderly and people with physical and mental impairments is presented below. The chart indicates that a part of public benefits in-kind and in-cash are not due to health-related impairments (e.g., pension and free use of public transport for pensioners). In principle, the SHA framework requests the reporting of HC.3, HC.R.6.1 and HC.R.7. It is suggested that work for improving the annual reporting to OECD Health Data for the 2006 and 2007 rounds of data collection should have a focus on the implementation of these requirements in a step by step manner: in 2006, data collection would focus on reporting a table with estimates for HC.R.6.1 Preparatory work should also start in 2006 for the reporting on HC.R.7 in

5 Total health and social expenditure (including cash benefits) for the elderly and people with physical and mental impairments Long-term health and social expenditure [or: Total long-term care expenditure] Other in-kind benefits ( e.g., free use of public transport) Other in-kind benefits ( e.g., free use of public transport) Cash benefits Long term nursing care [HC.3] Social services of LTC (or: LTC other than HC.3) [HC.R.6.1] Cash benefits related to sickness and disability [HC.R.7] All other cash benefits Long term health care (according to national definitions) Comparability 14. A well-known problem is the drawing of the borderline between health and social care with the differences across countries leading to considerable deviations from the ICHA definitions provided. The set of vertical lines in the last row of the previous chart intends to indicate that. (For more detail, see [DELSA/HEA/HA(2005)3]). The proposed guidelines are expected to provide a feasible approach to further harmonise national health accounting practices. General considerations for treatment of long-term care expenditure under SHA 15. The starting point in developing the present guidelines has been the list of requirements in paragraph In the interests of policy relevance, it seems desirable to develop a framework that provides information for different types of analysis that may require data on LTC at different levels of comprehensiveness (e.g., include or exclude health-related cash-benefits). 17. Therefore, it is proposed to report the following categories separately: Long-term nursing care, to be included in total health expenditure under the SHA framework (HC.3). Social services of Long-term care (LTC other than HC.3) 2 that is, HC.R.6.1 Total long-term care (LTC), including the social and health components of long-term care (HC.3 and HC.R.6.1); 18. The first two categories are in accordance with the SHA Manual. 3 The third indicator (total long-term care spending) would be a highly desirable addition to the current indicator list of the 2 Definition from the 2002 Glossary: Ongoing social services given to persons who need assistance on a continuing basis due to chronic impairments and a reduced degree of independence in activities of daily living (ADL) or instrumental activities of daily living (IADL). 5

6 ICHA-HC. It would also be in accordance with approaches widely used in international literature and national reporting practices From a policy analysis perspective, it is desirable to report sub-aggregates of total expenditure: the introduction of categories of expenditure on preventive-curative health care and total LTC expenditure into ICHA-HC is proposed. The table below shows a possible way of presenting total LTC in ICHA-HC. A possible way of presenting categories of LTC in OECD Health Data 2006 HC1 & HC2 Services of curative and rehabilitative care HC3 Long-term nursing care HC4 Ancillary services HC5 Medical goods HC 6 Prevention and public health HC7 Health administration and health insurance HC1-2, HC4-7 EXPENDITURE ON PREVENTIVE, CURATIVE and rehabilitative HEALTH CARE HC 1-7 TOTAL CURRENT HEALTH EXPENDITURE HC 1-7; HC.R.1 TOTAL HEALTH EXPENDITURE Memorandum items HC.R.6 Social services of Long-term care (LTC other than HC3) HC3 + HC.R.6 Total LTC EXPENDITURE HC 1-7, HC.R.6 TOTAL CURRENT HEALTH AND LONG TERM CARE EXPENDITURE 20. Total health expenditure will be retained as a major aggregate for international comparisons. The indicators Expenditure on preventive and-curative health care and Total current health and long-term-care expenditure will be used as aggregates presenting additional information of great policy relevance. 21. The table needs further refinement in order to include administration of LTC other than HC.3, as well as investment on LTC. This step is envisaged for the 2007 data collection. 3 The SHA Manual: Long-term care is typically a mix of medical (including nursing are) and social services. Only the former is recorded in the SHA under health expenditure. 4 See, for example: Robert B. Frieland: Facing the Costs of Long-term Care. An EBRI-ERF Policy Study, EBRI, 1990; and the European Study of Long-Term Care Expenditure (Report to the European Commission, Employment and Social Affairs DG) by PSSRU, London School of Economics and Political Science, Discussion Paper No. 1840; and Comas-Herrera et. al. (2003) Future Demand for Long-Term Care, 2001 to PSSRU, London School of Economics and Political Science, Discussion Paper No

7 A functional approach to define the boundaries of long-term care 22. The term long-term care services encompasses the organisation and delivery of a broad range of services and assistance to people who are limited in their ability to function independently on a daily basis 5 for an extended period of time. 6 To make the definition operational (to draw the borderline of LTC), all the relevant types of activities / services aimed at assisting dependent persons in performing activities of daily living and instrumental activities of daily living should be defined. These are as follows: Long-term nursing care Personal care services Home help; care assistance (help with IADL restrictions) Services in support of informal (family) care Supported living arrangements: long-term care together with residential (care) services Other social services provided in a long-term care context. Special types of transportation Case management / coordination 23. The key factor in drawing the borderline between LTC and other services provided for dependent people is whether the services are aimed at support with personal and domestic activities of daily living (that is ADL and/or IADL). Dependent people may be given other services, such as occupational rehabilitation or special education. These are not included in LTC expenditure. 24. Interpretation for each of the above listed components of LTC is provided under the heading Definitions. SHA requires accounting of expenditure spent on these functions regardless of whether their providers are considered as health care organisations or institutions outside the health care branch in national statistics. Treatment of complex provider organisations 25. A major characteristic of institutional care for dependent persons is that many provider organisations are complex: they provide nursing home services and assisted living facilities for people with IADL restrictions only at the same time. It is proposed to treat these complex provider organisations in a way consistent with the treatment of other complex organisations in the SHA ( e.g., hospitals). Expenditure on hospitals providing in-patient, out-patient, ancillary services are required to be disaggregated by these functions in the functional classification. Similarly expenditure on complex LTC institutions should be disaggregated between HC.3 and HC.R.6. Advice for possible ways of estimation is provided further down. 5 The term daily basis includes also cases when care is not provided every day, but two or three days a week on a permanent basis. 6 Due to differences in national practices it is not possible to give a concrete number for the extended period of time. A six month period has been chosen as formal cut-off in a number of national regulations, although these often tend to be applied in a flexible way, taken into account the uncertainty in making forecasts of functional status of a longer period of time. 7

8 Definitions Long-term nursing care (HC.3) and its subcomponents HC.3 Services of long-term nursing care 26. Long-term nursing care comprises a range of services required by persons with a reduced degree of functional capacity, either physical or cognitive, who are consequently dependent on help with basic activities of daily living (ADL), such as bathing, dressing, eating, getting in and out of bed or chair, moving, around and using the bathroom. This physical or mental disability can be the consequence of chronic illness, frailty in old age, mental retardation or other limitations of mental functioning and/or cognitive capacity. In addition, help with monitoring status of patients in order to avoid further worsening of ADL status. 27. This central personal care component is frequently provided in combination with help with basic medical services such as help with wound dressing, pain management, medication, health monitoring, prevention, rehabilitation or services of palliative care. Long-term nursing and personal care services may be provided and remunerated as integrated services with lower-level care of home help or help with instrumental activities of daily living (IADL) more generally, such as help with activities of home making, meals etc., transport and social activities. (Note: expenditure on these services should be reported under HC.R.6.1). 28. Long-term nursing care is provided in a variety of settings. It can be provided in a home, in a community setting, or in various types of institutions, including nursing homes and long-stay hospitals. Mixed forms of residential care and (internally or externally provided) care services exist in the form of assisted living facilities, sheltered housing, etc., for which a wide range of national arrangements and national labels exist. 29. The notion of long-term nursing care services usually refers to services delivered over a sustained period of time, sometimes defined as lasting at least six months. HC.3.1 In-patient long-term nursing and personal care 30. This item comprises long-term nursing care provided in specially dedicated institutions for residents with a severe level of care needs and functional limitation, which require ongoing care, including regular personal and/or nursing care. It also includes long-term care services provided to inpatients in long-stay hospital wards, or other hospital care settings. Services of accommodation are in these cases considered part of long-term nursing care provision. 31. Includes: long-term health care for dependent elderly patients. Hospice or palliative care (medical, paramedical and nursing care services to the terminally ill, including the counselling for their families) for long-term care recipients at the end of their live. 32. Also included is in-patient long-term nursing care for mental health and substance abuse patients where the care need is due to chronic or recurrent psychiatric conditions and a prolonged degree of functional limitations and/or need for help with supervision. 8

9 33. Excludes: long-term care services provided in residential settings such as adapted housing that can be considered to be a person s home rather than an institution for people with server disability and functional limitations with ADL tasks. Also excludes residential services (expenditure on accommodation) in institutions where the personal or nursing home care components of services is small compared to the housing services component and/or where services provided are manly help with IADL restrictions. HC.3.2 Day cases of long-term nursing care 34. This item comprises services of long-term (health) care provided on a day case basis to people who need assistance on a continuing basis due to chronic impairments and a reduced degree of independence and activities of daily living. Day-care services of long-term nursing care can be provided in institutions or community facilities. 35. Includes: day cases of long-term nursing care for dependent elderly patients; respite care and other day care provided in homes for the aged by specially trained persons, where personal care is an important component of services. Includes services of transport to day-care centres. 36. Excludes: low-level services of company, social activities. HC.3.3 Long-term nursing care: home care 37. This item comprises long-term nursing and personal care services provided to patients who need assistance on a continuing basis due to chronic impairments and a reduced degree of independence and activities of daily living in cases where the care recipients live at home, or in a community based setting, such as adapted housing, which provide an individual housing environment in combination with a certain degree of services. 38. Includes: only nursing and personal care services; and services in support of informal (family) care related to ADL restrictions 39. Excludes: all other types of LTC services. 40. Nursing and personal services delivered at home are often provided together with home help by the same person / organisation. In these cases disaggregation of spending on home care (HC.3.3) and home help (as part of HC.R.6.1) is required. When disaggregation of these spending items is not possible, experts should decide based on the dominant character of the particular programs whether these cases are reported under HC.3.3 or HC.R.6.1. When it is not possible to judge the dominant character of the programs concerned, it is proposed to report this expenditure under HC.R.6.1. However, when a country already has an established practice of reporting this expenditure under HC.3.3, it is proposed not to change this practice until the envisaged revision of the ICHA-HC. (This should, however, be clearly indicated in the methodological information provided.) HC.R.6.1. Social services of Long term care (LTC other than HC.3) 41. This item comprises services of home help and residential care services: care assistance which are predominantly aimed at providing help with IADL restrictions to persons with functional limitations and a limited ability to perform these tasks on their own without substantial assistance, 9

10 including supporting residential services (in assisted living facilities and the like). As already discussed, home help or, more generally, help with instrumental activities of daily living (such as help with activities of home making, meals etc., transport and social activities) may be provided and remunerated as integrated services with home care (HC.3.3) services. An effort should be made to estimate expenditure on these items separately. When this is not possible, the proposals under the previous paragraph should be followed. 42. Includes: Subsidies to residential services (including costs of accommodation) in assisted living arrangements and other kinds of protected or services housing for persons with functional limitations (including residential services to people with mental retardation, mental illness or substance abuse problems and homes for the physically and mentally handicapped); services of housekeeping, social services of day care such as social activities for dependent persons; transport to and from day-care facilities or similar social services for persons with functional limitations. 43. Excludes: Services of surveillance of persons with mental deficits such as dementia patients; excludes services of higher level assistance and long-term care as defined under HC.3; excludes, e.g., services of assessment, case management and co-ordination between health and long-term care services. Also excludes: meals on wheels. The reason for excluding meals on wheels is more practical than theoretical: difficulties in the separation of spending on meals on wheels for persons with functional limitations from spending on meals on wheels due to other reasons. 44. Excludes also: special schooling for the handicapped and vocational rehabilitation. HC.R.7 Cash benefits related to sickness and disability 45. This item comprises cash benefits for income protection in the case of sickness or disability. Includes: Benefits of paid sickness leave, by either public programmes, employers or other (private) sources; income protection in the case of disability (other than disability pensions for persons above the retirement age). 46. Excludes: Cash-benefits of care allowances to support formal or informal care in the community; so-called programmes of consumer choice and/or personal budgets for long-term care services. Total long term care (including HC.R.6.1) 47. The term long-term care services encompasses the organisation and delivery of a broad range of services and assistance to people who are limited in their ability to function independently on a daily basis over an extended period of time. Functional dependency can result from either physical or mental limitations and is defined in terms of the inability to perform essential activities of daily living (ADLs), such as eating, bathing, dressing, using the toilet, getting into and out of bed, and moving about the house, or activities necessary to remain independent, known as instrumental activities of daily living (IADLs) such as shopping, cooking, doing laundry, managing household finances, and housekeeping. Total long-term care includes: Palliative care (end-of-life care) Long-term nursing care (intensive, high level care and assistance with ADL restrictions), including accommodation in (high-level care) nursing homes 10

11 Personal care services (assistance with ADL restrictions) Community care services for remote surveillance and alarm, telematik-links to call centres and the like (including the expenditure on the corresponding equipment). Home help; care assistance (help with IADL restrictions, including housekeeping, meals on wheels) Services in support of informal (family) care (such as care allowances, social protection of informal carers, counselling) Residential (care) services (other than nursing homes): Services of care and social support provided in supported living arrangements: protected housing and the like (including telelinking to call centres and the like) Other social services provided in a long-term care context ( e.g. social services of day care, social activities for dependent older persons etc.), including o Assisted transportation linked to day care and other community services of long-term care o Case management / coordination (other than administration of long-term care programmes) Health services and goods delivered together with long-term care 48. Health care services in relation to long-term care include rehabilitation, maintenance care, pharmaceuticals and other medical goods. Rehabilitation and maintenance care 49. Acute medical problems, such as cardiovascular disease, stroke or injuries from falls frequently mark the start of long-term care needs for people in particular in high age classes. An episode of rehabilitation and maintenance care to prevent diseases or conditions from getting worse and to maintain or restore a maximum of functioning is therefore frequently part of long-term care, for example when more intensive rehabilitating is provided during an initial time of a person s prolonged stay in an institution (nursing home and the like). 50. Recommendation: Episodes of rehabilitation following acute events (such as stroke) should not be recorded under long-term care, even where they are provided in mixed institutions providing both nursing home and rehabilitative services (e.g. nursing homes in the US). Pharmaceuticals and other medical goods, including medical assistive technology 51. Recipients of long-term care may be regular consumers of a number of pharmaceuticals. They also may profit from medical assistive technology, and other medical goods. In some cases, long-term care services are supported, and provided in combination with assistive aids, tele-links, and home adaptations to allow dependent persons to live in their own homes, or increase their independence in an institutional setting. 11

12 52. Recommendation: For pharmaceuticals and other medical goods that long-term care recipients consume, the same SHA accounting rules of the functional classification should apply as for other consumers. For recipients of long-term care in an inpatient setting, these are usually included in expenditure under this category. For recipients of home care, all medical goods should be recorded separately under the function ICHA-HC.5 (medical goods). COMPONENTS OF LTC SPENDING 53. In the following major types / components of long-term care are presented. For each service it is indicated whether the given service is included in long-term nursing care [HC.3]or social service of long-term care [HC.R.6.1]. 54. This sections reviews core concepts along a continuing of long-term care services in order of decreasing level of medicalisation or level of care need: Palliative care (end-of-life care) Long-term nursing care (Skilled nursing care) Personal care services Home help; care assistance (help with IADL restrictions) Services in support of informal (family) care Supported living arrangements: residential (care) services Other social services provided in a long-term care context. Special types of transportation Case management / coordination Palliative care (end-of-life care) 55. According to the SHA Manual long-term nursing care (HC.3.3) includes hospice or palliative care. The original text (page 118) continues to apply: This includes hospice or palliative care (medical, paramedical and nursing care services to the terminally ill, including the counselling for their families). Hospice care is usually provided in nursing homes or similar specialised institutions. Long-term nursing care 56. Long-term nursing care, sometimes also referred to as skilled nursing care, is the term frequently used (but not further defined) in the original definition of long-term care in the ICHA-HF classification of the SHA manual. 57. In its simplest version, this term refers to care provided by a skilled nurse, according to national professional standards that govern registration or licensing of nurses. In the context of long-term care, this often refers to skilled nursing care that is provided to clients on a daily/ongoing basis. This type of care can include administering medication, medical diagnosis and minor surgery, or wound dressing, Sometimes this refers to care by less qualified personnel but provided under the supervision of a (higher) qualified health professional. 12

13 58. The notion of long-term nursing care is in particular used for long-term care provided in a number of specialised institutional service settings, such as nursing homes or mental hospitals, or homes for individuals who are developmentally challenged. However, the term is now also increasingly used for nursing home care by qualified professionals provided for chronically ill or disabled persons. 59. Recommendation: include expenditure on long-term nursing care both for inpatients and home care recipients in the SHA (HC.3). For residents of nursing homes, the full cost of accommodation should be included. An attempt should be made to separate expenditure on long-term care recipients outside of specifically tailored facilities and programmes, such as persons receiving long-term care type services in hospitals. 60. A general problem is to separate HC.1.4 (curative-rehabilitative home care) and HC.3.3 (longterm nursing care: home care). Providers of home care usually supply both HC.1.4 and HC.3.3, but data on expenditure by these functions are not available, in particular concerning private expenditure and/or private providers. In this case, a possible way of estimating HC.1.4 and HC.3.3 could be to ask medical experts in ministries, health insurance and provider institutions to categorise providers of home care based on their dominant activities (for example, home care provided by hospitals might be predominantly HC.1.4, and home care provided by private home care organisations might be predominantly HC.3.3.). A better, but more expensive way would be to conduct a special survey (preferably as part of an existing survey) every 4-5 years to estimate the functional breakdown of home care providers and use the results to estimate HC.1.4 and HC.3.3 in the case of providers of home care. Personal care services 61. Personal care services refer to intermediate care, mainly of assistance with one or more activities of daily living either through physical support or supervision for a person who is disabled or is otherwise unable to care for themselves in this respect. Custodial care is sometimes used as an alternative English term. 62. The definitions of personal care services and of Activities of Daily Living (ADLs) are closely linked. ADLs, have, for example been defined as bathing, dressing and grooming, walking and moving about, eating, toileting, and other personal care tasks. 63. Personal care services are in many instances provided by care assistants, or aides who are not medical professionals (such as qualified nurses, other medical or paramedical personnel) but often are trained to help with these tasks. However, depending on the division of labour in long-term care institutions or in home care, the same person and service provider may typically be in charge of providing both (skilled) nursing care and personal services together in one care package, depending on national arrangements. 64. Recommendation: Include personal care services in the SHA (HC.3), independent of the qualification (registration status) of the professional care giver. 65. However, when a country already has an established practice for reporting expenditure on personal care services under HC.R.6.1, it is proposed not to change this practice until the envisaged revision of the ICHA-HC. This should be clearly indicated in the methodological information provided. 13

14 Home help, care assistance and other help with IADL restrictions 66. English language terms for this type of care appear to be even less standardised than nursing care and personal care. Home help has been used in the literature as English language translation of a number of home care arrangements of all (most) levels of care need and care intensity. There seems to be no common, generally accepted, English language term that would designate this kind of lower level care frequently provided in combination with personal care for the benefit of longterm care recipients. In addition, service arrangements, and service availability, for low-level care under public and private arrangements differ widely between countries. 67. Recommendation: Home help, care assistance and other help with IADL restrictions should be included only in HC.R.6: Health-related social services of long-term (LTC other than HC.3). 68. When home help is provided together with HC.3.3. Long-term nursing and personal care: home care, these services should be separately accounted under HC.3.3 (home care) and HC.R.6 (home help). When the separation is not possible, all expenditure should be reported under HC.R.6. Services in support of informal (family) care 69. Recommendation: All social services expenditure in support of informal care-givers should be included in long-term nursing care expenditure and thus be regarded as cost of care provision. This should include special social protection rights, such as pension entitlement for time spent on informal care. Counselling and training of care recipients and (informal) care-givers should be included. Residential (care) services: retirement homes, old people homes, adapted/assisted living etc. 70. There is a trend in some OECD countries towards a continuum between living at home and living in an institution. This continuum is provided by a range of housing arrangements adjusted to the needs of older persons, or persons with disabilities. They combine the idea of independent living (an own flat with a large degree of self-determination over most aspects of personal life) with the supply of social support that can come in various forms: this can include meals, social activities, services of home making, where needed, and on-site, or in other ways connected home care services. These can either be delivered as (optional) add-on packages to the primarily residential service component, and thus be provided under one roof, or as independent home care providers, where there is no organisational difference between their provision in a traditional home or a residential services unit. 71. Large differences are found between countries in how distinct the role is between institutions of residential services and those institutions providing housing together with services of personal care. People with functional limitations or serious chronic health problems may not be admitted to old age peoples homes or retirement homes, under the rules applied in many regional/national policies towards the care for the elderly. By definition, they then operate outside the care industry or longterm care business. 72. A special case of residential services are the so-called independent or assisted living arrangements. In principle these are constructed in ways that provide residents with a high degree of independent living, which resembles an own flat. They offer individual combinations of housing, personalised supportive services (help with IADL restrictions) and personal care, but usually do not provide the highly skilled and/or more intense care provided in a nursing homes. 14

15 73. These arrangements come in many national and regional varieties and have many names, such as Continuing Care Retirement, Group Adult Foster Care (both US). If these have a feature in common, this is the possibility to buy in additional care services, mainly of the home help and personal care type. 74. The boundaries between purely residential arrangements and care arrangements in residential care homes can be blurred for a number of reasons, depending on the country. For example, in countries where the average age of residents has risen significantly in the past, a growing number of very old residents will become functionally disabled, in particular of the dementia type. More and more homes have then started to include care arrangements to accommodate these clients on site. 75. Recommendation: Residential services in retirement homes, old people homes, assisted living, adapted housing, and other home-like arrangements should be excluded from long-term nursing care expenditure, but should be included in HC.R.6.1 and total LTC expenditure, except those housing arrangements (and units of mixed institutions) where services related to IADL are not (or only incidentally) provided.(for more details, see paragraphs on Further recommendations on estimating the boundary between HC.3 and HC.R.6). Programmes of personal budgets and consumer-choice, care-allowances etc. 76. Care allowances, if specified as payment for compensating for informal (family) care givers for help with ADL are accounted as HC.3.3 Home care, provided by household (HP.7.2) and financed by general government (HF.1) 77. Programmes of personal budgets and consumer-choice can be used in two ways: for paying formal providers; and as compensation for services provided by the family. 78. If it is possible to distinguish between eligibility due to ADL restrictions or IADL restrictions, the expenditure should be accounted as HC.3 or HC.R.6, respectively. If it is not possible to make this distinction, all payments should be reported under HC.R.6, financed by HF Note: Care allowances and programmes of personal budgets and consumer-choice should be made distinct from HC.R Note: for more details on the arguments for, and limitations of, the proposed method, see [DELSA/HEA/HA(2005)3] Further recommendations on estimating the boundary between HC.3 and HC.R Trends of long-term care policy over the last ten to twenty years have resulted in the spread of models of care provision where persons with functional limitations are provided with a continuum of care. This provides for individual choices among an increasing number of combinations between independent living in the community, living in the community with various levels of intensity of (constant) monitoring and increasingly comprehensive packages of care, and finally hospital at home or nursing home-type arrangements for those with most severe care needs. These innovations in long-term care policy blur the boundaries between residential services and other long-term care services. This poses challenges for drawing the borderlines between HC.3 and HC.R.6.1, as well as drawing the borderlines between HC.R.6.1 and residential services excluded from HC.R.6.1 (residential services for persons without restrictions in IADLs). 15

16 82. The following paragraphs provide further recommendations for estimating the boundaries of components of LTC that is HC.3, and those of HC.R.6.1 including estimating the boundary between HC.R.6 and residential services excluded from HC.R Where eligibility criteria and public programmes explicitly distinguish between services of home help (often under private responsibility) versus help with ADL restrictions (publicly funded with/or without means test), this boundary line should be retained in allocating expenditure to HC.R.6 and HC.3, respectively. It is important to document underlying eligibility criteria and programme design in the source descriptions of health accounts 84. The most difficult question is: How to disentangle three types of expenditure in the case of mixed institution: (i) expenditure to be reported under HC.3; (ii) under HC.R.6.1; and (iii) expenditure neither included in HC.R.6.1? In particular, in which cases is accommodation an integrated, inseparable component from care provision, and thus to be reported under HC.3 versus HC.R.6? 85. For mixed institutions/care arrangements, where residential, housing, and care services (including health services) are provided to various degrees the following structural information should be used to allocate spending. Purpose of physicians and other professionals visit might be related to rehabilitation following acute care events; and also to the dependent status (e.g., care related to dementia or pain alleviation for the terminally ill). In principle, the first type of services should be reported under HC.1 or HC.2, while the second type under HC.3. However, the actual databases might not make it possible to separate these components. Manpower costs of personnel with health qualification, employed by mix institutions should be reported under HC.3. (It is supposed that these personnel provide nursing care.) All spending, including residential services, medication and medical appliances for persons who are bed-ridden or very frail, such as dementia patients at advanced stages and who usually require 24 hour care, should be included under HC.3. Where funding arrangements (administrative records) do not allow for separating actual spending on persons receiving higher level care (HC.3) versus lower level care (HC.R.6.1), the basic approach is to estimate the number of three types of persons and the average costs of the whole service-packages they receive: - (i) those who receive palliative, nursing and personal care; (related expenditure should be reported under HC.3) - (ii) those who receive only social support services due to IADL restrictions (related expenditure should be reported under HC.R.6); and - (iii) the number of persons who basically live in mixed institutions to avoid social isolation or do not have, or cannot afford, another satisfactory housing arrangement. (related expenditure should be excluded from HC.R.6) To estimate these items (number of persons and average costs), possible methods might be: surveys or expert opinion. For example, based on samples of patients which could be used to correlate available client characteristics to cost. Information in admission records usually include functional status (care needs in terms of ADL and IADL restrictions), chronic illness, mental health status, age. These could be used for indirect cost estimates. 16

17 Mixed institutions might separate persons with more severe care needs in special nursing care units. As a preferred method, Information on relative resource use of various units could be used to separate costs between nursing care wards and other sections. For example, time-use surveys of staff employed in institutions may be available. These might also be required for government papers on future care needs and the like, which could be used for point in time estimates. In institutional care arrangements, the need for statistics and regular monitoring of functional status of residents is now part of quality of care regulations in a growing number of national settings, providing a wealth of relevant information for cost estimates. If neither survey data, nor experts estimates are available for separating HC.3 and HC.R.6 components within complex institutions, the dominant profile of the institution should be defined and the whole of expenditure on the institution concerned should be reported accordingly (or excluded even from HC.R.6). In principle, this method should be avoided; therefore, this can only be regarded as a temporal solution, until better estimates become available. 86. A further question is: Which social services aim predominantly at social inclusion, and at proving a social environment to combat social isolation rather than protecting persons with functional limitations (body/mental functioning)? In general this seems to be the case, when no or only limited help with IADL (and no help with ADL) restrictions is provided. In particular this is the case for services and/or living arrangements where eligibility criteria explicitly require recipients to be without health impairing chronic conditions which would require substantial help with IADL or ADL restrictions. Expenditure on these services should be excluded even from HC.R Further comments on general challenges of data availability of long-term care for international comparisons are provided in [DELSA/HEA/HA(2005)3]. 17