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Public Funds_ Family Commitment.pdf


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									Public Funds, Family Commitment

     A review of government policy
   concerning public compensation to
  family caregivers in British Columbia

                Prepared by:
                The Interministry Committee on
                Compensation for Family Caregivers

                Released June 3, 2002
Public Funds, Family Commitment                                                     1


 Care has been taken to ensure the accuracy of the information in this report; however
 as research concluded in October, 2001 the authors cannot be responsible for
 changes to legislation, programs or services that occurred after that time. Readers
 should satisfy themselves as to the currency of the information.
Public Funds, Family Commitment                                                                                                                  2

Table of Contents

1. Introduction .......................................................................................................................... 2

2. Context .................................................................................................................................. 3
      2.1      Overview ...................................................................................................................... 3
      2.2      Profiles ......................................................................................................................... 4

3. Policy and Practice .............................................................................................................. 5
      3.1      British Columbia ........................................................................................................... 5
      3.2      Other Canadian Jurisdictions ....................................................................................... 7
      3.3 The American Experience............................................................................................. 9
      3.4      The International Experience ..................................................................................... 13
      3.5      Observations on Efficacy and Impact......................................................................... 17

4. Guiding Principles.............................................................................................................. 21

5. Conclusions........................................................................................................................ 21

   References ............................................................................................................................. 27

     Appendix A, Terms of Reference, IMCCFC ......................................................................... 30
     Appendix B, Summary of Provincial Policies in BC .............................................................. 32
     Appendix C, Community based health and social support programs:
                Clients and expenditures (BC, Spring 2001) ............................................................ 34
Public Funds, Family Commitment                                                                     3

1. Introduction

The Government of British Columbia provides funding for important health and family supports
that enable people with disabilities to live in their own homes, for example respite for the parents
of children with disabilities and home support services for adults with disabilities and the frail
elderly. Ministries provide this funding as part of an approved service plan and in some cases,
people with disabilities are themselves responsible for purchasing the services.

Government policy generally precludes compensating family caregivers.                Some of these
caregivers, consumer organizations, and the clients themselves, view the current policy as
discriminatory and have initiated hearings before the BC Human Rights Commission.

Relatively little is known but much conjectured about the short and long-term impact of
compensating family caregivers. This report is intended to build an evidence-based foundation
for considering policy options. It is based upon:

     !    discussions undertaken by the Interministry Committee on Compensation for Family

     !    reviews of policy and practices in other jurisdictions, undertaken by the Ministry of Health
          Services (MOHS) and the Ministry of Children and Family Development (MCFD); and

     !    compilations of literature assembled separately by the BC Human Rights Commission
          and the Ministry of Health Services.              These compilations have a number of

           •   they emphasize the caregiving arrangements available to the frail elderly rather than
               to the full range of people with disabilities;

           •   they consider jurisdictions whose governance structures, social environments and
               program designs are not entirely compatible with those in British Columbia and
               Canada; and

           •   They do not deal with the potential implications with respect to typical children, for
               example regarding child care subsidies or home schooling.

    Appendix A includes the Committee’s Terms of Reference.
Public Funds, Family Commitment                                                                    4

2. Context

2.1      Overview

In recent decades, governments in BC and elsewhere have developed an array of programs
providing home-based health and family supports.2 These programs:

     !    enable people with disabilities to continue living in their homes and thereby decrease the
          cost of service to government; and

     !    recognize and support the contribution and efforts of family caregivers.

As a general rule, these programs do not provide financial compensation to family caregivers.
Such compensation is thought to be inconsistent with the long-established tradition of family
members being responsible for each other. This tradition is particularly strong where spouses
or children are involved and where family responsibilities are clear in both law and practice. The
tradition is less clear for parents caring for their adult children and for adult children caring for
their parents.

Society’s concern is that compensating family caregivers would compromise the “natural family
support system” and would have a “corrosive effect … on family mores.” It would replace
families’ sense of commitment and obligation with “more measured and more mercenary
expectations that the state should compensate for family care giving.” (Benjamin, 1999:241)
Society is also concerned that compensation will lead to relatives withholding care unless paid.
In such cases, the prospect of compensation would open the floodgates, bring applicants “out of
the woodwork,” generate demand that exceeds resources and threaten programs’ fiscal
sustainability. (Keefe, 1997:256)

In contrast advocates suggest that a family compensation option would recognize the right of
people with disabilities – or of those in a trusted relationship with them – to manage their own
care and to be responsible for their own well-being. They further suggest that this option would
broaden the choices available to people with disabilities and deepen the pool of available
caregivers. They also suggest that such options will become increasingly important as the
population ages and as women come to participate even more fully in the paid labour force.

    Appendix B identifies the BC programs providing some of these health and family supports.
Public Funds, Family Commitment                                                                                5

2.2    Profiles

Statistics Canada data provide a profile of people with disabilities in British Columbia and
indicate that this population is significant in both number and need.

   !    There are approximately 540,000 people with a disability in BC (1991) representing
        16.7% of the population. Almost 95% live in private households.

   !    Figure        1    presents       this
        population’s distribution by age         Fig. 1, People with Disabilities by Age, BC
        and indicates that the largest           1991
                                                                                0-14 yrs
        group is 65 years of age or
        older.        There   are      53,000                    65+ yrs
                                                                                           15-34 yrs
        children      (0-14   years)      with                                               17%

                                                                                  35-54 yrs
                                                                    55-64 yrs
   !    About 47% of adults have a                                    15%

        mild disability, 32% a moderate
        disability and 22% a severe
        disability.       Almost    89%     of
        children under the age of 15 years who have a disability are classified as having a mild
        disability and 8% a moderate disability.

People with disabilities often require some assistance with their daily activities.                    Statistics
Canada data indicate that of those requiring assistance, 47% received all the help they needed,
42% received help but needed more and 11% received none. Fifty-six percent reported that
family members provided most of this assistance. (Statistics Canada, 1995)

The 1996 General Social Survey (GSS) provides an important profile of those providing care to
the elderly in Canada. (Frederick and Fast, 1999) It indicates that the informal caregiver system
– consisting of family, friends and neighbours – provides 80%-90% of the support given to
elderly people. The GSS also indicates that of those 12,756 Canadians surveyed:

   !    12% provide some informal, unpaid assistance to seniors with long-term health or
        activity limitations. Women constitute 61% of caregivers in the informal system. Over
        65% of caregivers were in the paid labour force although women were considerably less
Public Funds, Family Commitment                                                               6

        likely than men to be employed outside the home. More than two-thirds of caregivers
        were married and over 25% were also caring for children.

   !    55% of caregivers were caring for a parent or parents and 39% were caring for a friend,
        sibling or other family member. Forty-two percent of women and 34% of men were
        caring for more than two seniors.

   !    only 16% of women and 11% of men were living with the person for whom they provide
        care although the large majority lived in the same general area.

   !    83% of women and 89% of men who spent 7.5 hours or more per week in caregiving
        activities reported some level of emotional burden and stress associated with their

   !    15% of caregivers indicated that some form of financial compensation would be useful in
        supporting their caregiving relationship, including over 30% of those in Atlantic Canada
        and 13% in BC, as opposed to other supports such as occasional relief or information on
        nature of illness/disability. Those under age 65 and those separated or divorced were
        more likely to identify financial compensation as an important support.       Under the
        financial compensation option, the interviewer indicated that this option “includes tax

3. Policy and Practice

3.1    British Columbia

Government policy in British Columbia is very consistent with regard to precluding
compensation for family caregivers. In the Ministry of Health Services, for example, Home and
Community Care policy (8.H) states that financial subsidies are not available “to family members
to care for relatives, either through direct payment to the individual, payment through a
Homemaker Agency or payment as an approved Service Provider.” Its Choice in Supports for
Independent Living program (CSIL) affirms that “services supplement and complement but are
not intended to replace services and supports normally provided by family members.”

Similarly, the Ministry of Children and Family Development affirms in policy and practice that
families are considered the primary caregiver for children and that the ministry’s role is to
supplement the family’s efforts.
Public Funds, Family Commitment                                                                         7

Regardless of this consistency, ministries have somewhat different concepts of family.

     !    The MOHS Home and Community Care policy does not formally define family members
          but leaves that determination to the Health Authorities on a case by case basis. Family
          is generally interpreted to mean the extended family including aunts, uncles and cousins.

     !    The MCFD Child, Family and Community Services Act does not define “family” but does
          define “parent” and “kin” with the latter being any individuals who are related by blood,
          marriage or a long-standing family-like relationship. The Ministry’s At Home Respite
          Program precludes compensation to any person who is the parent of the child, or who
          resides in the family home and is a dependent of the parent or guardian, or is a spouse
          of the parent or guardian. Parents accessing the MCFD Supported Child Care Program
          may not pay themselves to provide in-home care but they can pay a relative who does
          not reside in the family home and is not a spouse of the parent.

     !    For child care programs (including Supported Child Care), the Child Care BC Act, BC
          Benefits (Child Care Subsidy) Act and BC Benefits (Child Care Subsidy) Regulation
          provide definitions for “family” and “eligible child care providers”.       The definition of
          “parent” is fairly broad, and includes a person with whom a child resides and who stands
          in place of the child’s father and mother. The definition of “child care” excludes the
          parent from being the caregiver.      The definition of “child care provider” can include
          relatives except where care is provided in the child’s home and the caregiver is a relative
          of the child or a dependent of the parent and resides in the child’s home (unless the
          relative resides in a private suite within the child’s home).

Some of the programs permit exceptions when there is no alternative care available or when it
clearly makes most sense. The number of known exceptions in the different programs is very
small relative to the size of their caseloads. The one clear exception to government policy
arises in the BC Assistance program for students with permanent disabilities.3 It provides funds
for disability-related equipment and services and can be paid to a family member. The program
relies upon a test of financial need and has strict accountability requirements.

    It should be noted that under the BC Benefits assistance programs, “single parents with at least one
dependent child who (i) is under 7 years of age, or (ii) has a physical or mental condition precluding the
single parent from leaving home for the purposes of employment” are exempt from the requirement to
seek work, as are spouses of persons with disabilities. Recipients must first meet the normal income and
asset requirements for income assistance to qualify for this compensation.
Public Funds, Family Commitment                                                                  8

3.2    Other Canadian Jurisdictions

A summary of information concerning family caregiver compensation policies in other Canadian
jurisdictions is included as Appendix B.      All research to date indicates that all Canadian
jurisdictions have adopted policies and practices that consistently ban the compensation of
family members for caregiving. Where exceptions are made, they are done so on a case-by-
case basis, depending primarily on the availability of non-family caregivers.

The Frail Elderly

Most jurisdictions preclude such compensation in programs comparable to those of the Ministry
of Health Services in BC. Until recently, Nova Scotia was an exception to this pattern and
provided modest, largely symbolic compensation to family members. However the Nova Scotia

   !    was tied to its social assistance program with beneficiaries subject to a test of needs and

   !    was largely restricted to rural areas where few formal services were available; and

   !    provided a minimum level of compensation that was unrelated to the actual number of
        caregiving hours provided.

The Quebec Respite Program provides a maximum of $600/year to people with significant
special needs for the purpose of purchasing caregiver services. Recipients may use the funding
to compensate family caregivers. Quebec also provides family caregivers with certain financial
benefits through its provincially administered income tax program.

Like Quebec, the new Territory of Nunavut will also compensate family caregivers. Here, doing
so is a practical necessity since the communities are small, the labour pool is limited and many
residents are related to one another.

New Brunswick does not have written policy on the matter but in practice discourages
compensating family caregivers. It previously clearly allowed payments to family members, but
has reversed this policy due in large part to instances of fraudulent abuse of the scheme (see
below). New Brunswick and Manitoba will consider compensation requests on a case by case
Public Funds, Family Commitment                                                                    9

basis. The Alberta Home Care program prohibits payments to family members but will consider
exceptions in cases where a qualified employee is not available. However, it has approved only
a handful of exceptions in the past decade.

Newfoundland policy similarly precludes payments to family members living in the same
household although it has approved exceptions in isolated communities where the person with a
disability requires specialized care. Saskatchewan policy also precludes compensating family
caregivers but will allow home care agencies to assign staff to care for members of their own
family. Saskatchewan, like British Columbia, is facing a Human Rights case on the issue.

Federally, the Department of Veterans Affairs allows the payment for caregiving by relatives
only where that relative lives outside the home of the person in care. Veterans Affairs places a
cap on service levels and defines a relative as anyone related to the client, whether dependent
or not.

It should be noted that the federal government has demonstrated an ongoing interest in the
topic of family caregiver compensation, having funded a number of research papers on the
issue. It may be that the federal government is in the best position to adequately address this
issue, as the evidence from other jurisdictions indicates that federal government intervention
has been a key factor in expanding compensation to family members. The federal government
might be better placed to deal with compensation to family caregivers, perhaps through the tax
system or the employment insurance system.

Children and Adults with Disabilities

Canadian programs providing health and family supports for children and adults with disabilities
generally will not compensate family caregivers. Ontario, however, appears to have different
policies for the two population groups: it prohibits payments to family members providing care
to children but has no policy relative to adults since adult services are funded through Transfer
Payment Agencies.

In several jurisdictions – New Brunswick and Newfoundland for example – the reasons
underlying the prohibition relate to concerns about service quality and accountability. Other
jurisdictions adhere to the principle that such care is a family rather than a public responsibility.
Ontario and Saskatchewan state that family compensation is inconsistent with their program’s
family respite objectives.
Public Funds, Family Commitment                                                                    10

Different jurisdictions define family in different ways. New Brunswick includes parents, siblings,
grandparents, aunts, uncles and spouses. Newfoundland includes all blood relatives, in-laws,
adopted sons/daughters or relatives of the son/daughter as well as any “person who was never
formally adopted by the client/spouse but there is a recognized familial relationship with the
client/spouse and relatives of that person.”              Nova Scotia and Saskatchewan preclude
compensation for those “immediate family members living in the same home.”

Jurisdictions generally permit some exceptions:
     !    “in extreme situations when no other option is available” (New Brunswick, Ontario);
     !    in situations where a client has engaged home support services privately and has
          employed a relative during that time (Newfoundland); and
     !    in situations where “there is overwhelming evidence that this is the preferential delivery
          mechanism” (Newfoundland).

A number of jurisdictions are currently re-examining their policy in this regard as a result of
public pressure (New Brunswick) or Human Rights Commission appeals (Saskatchewan).
Newfoundland expects to change its policy “very soon.”

3.3      The American Experience

In the United States, federal Medicaid law and regulations permit the hiring of most family
members with the exception of those “legally responsible” for the person with special needs. In
essence this precludes spouses caring for spouses and parents caring for their minor children.
As of 1990, at least 35 states allowed care allowances to be paid to relatives providing personal
care services. (Linsk, 1992:68)

A direct comparison of American programs to the British Columbia experience is difficult and not
always appropriate. There are many conditions that operate in the United States that must be
considered before making direct comparisons to British Columbia’s situation, including
workforce issues for home support workers, eligibility for community care services, caps on
services, and hourly rates available to caregivers. These are considered below4.

In general, the following conditions are true for almost all American home support programs that
have been reviewed, including those that allow payment to family members:
          •   there is some kind of cap on services;

    And are based primarily on consideration of California, Washington, Illinois and New Jersey
Public Funds, Family Commitment                                                                 11

        •   there are eligibility restrictions based on low income (usually less than $5,000 per
            year) and low assets;
        •   wages paid are not much more than minimum wage;
        •   caregivers are often paid through an independent provider program or a consumer-
            directed program (rather than a home support agency), and are paid at rates that are
            usually close to minimum wage; and
        •   there is a widespread difficulty in recruiting and retaining home support workers due
            to the low wages paid, one result of which has been the need to offer financial
            incentives to family members to provide care to fill this gap.

Eligibility for services
In most U.S. programs, a test of both need and income is applied to applicants. In most states,
and indeed in almost all of the states where family members may be paid to provide care,
eligibility for home support services is based solely on income levels. For states that have
federally administered supplements through the Supplemental Security Income (SSI) program,
applicants must have incomes below $6,360 to $7,544 and assets below $2,000 for a single
person, with commensurate levels for couples.          For the state home support program in
Washington, assets must not exceed $10,000. Even in California, which has several different
home support programs, some of which are state-funded, all clients must have low income in
order to receive services.

Cap on services
Most states have some form of cap on hours of service provided, some depending on the level
of client need. For example, in California, if an individual has impairments of two or more
activities of daily living, then they are eligible for 283 hours per month; if they have less the
maximum allowed is 195 hours per month. In New Jersey the cap is 25 hours per week for
most clients, and for those with serious health concerns the cap is 40 hrs per week. Illinois has
a cap of $1,800/month.

Hourly rates paid
Hourly rates for both home support agency workers and family caregivers are much lower
throughout the United States than are currently paid in British Columbia and throughout
Canada. Across the USA, agency rates range from $12.50 per hour to $14.50 per hour, versus
approximately $26 to $27 per hour in BC. Rates paid to family caregivers are still lower, and are
usually just slightly higher than minimum wage. In Oregon, the independent provider wage is
$8.35 per hour. Michigan pays minimum wage to caregivers to a maximum of $333/month and
does not pay benefits. California pays minimum wage plus 3% with public authorities being
responsible for negotiating wages. In both the California and the Illinois programs, the individual
Public Funds, Family Commitment                                                                 12

locates their own care provider but the State has a legal obligation to manage administrative
tasks and costs including payroll and Workers’ Compensation. In California, approximately 75%
of caregivers in one large program are family members.

Workforce Issues
Part of the reason that states are in a position to pay such low rates is that in the United States
there is currently, and has been for some time, a shortage of trained home support workers.
Because the rates paid to home support workers are not a ‘living wage’ and do not attract
individuals to the workforce in this capacity, or retain them, the federal government and the
individual states have had to take action to ensure care is provided to those in need.   This is in
contrast to the British Columbia context, where relatively high wage rates contribute to a
sustainable workforce that is able to meet the needs of clients.

As a result of the American workforce shortage, the federal government modified its Medicaid
rules (Supplemental Security Income, or Care for the Aged, Blind and Disabled) regarding who
may be paid to provide care for personal care services.         Currently, community-based waiver
programs may allow for family members to be paid as caregivers except spouses and parents of
dependent children (the applicable legislation was amended in 2000).           Some states, like
California, that do not depend solely on federal Medicaid funds for their community care
programs go one step further and allow payment to spouses and parents of dependent children.
Some of the Cash and Counselling Pilot sites also allow payment to spouses and parents of
dependent children.

Limited delegation of nursing tasks
Another contributing factor to the American practice of paying family members is that some
states have very strict codes of practice for various professionals, including nursing, which
restricts the specific functions paid home support workers can carry out. In Washington, for
example, the Nurses Practice Act is very prescriptive and allows delegation of nursing tasks
only in residential facilities. In the community, the only people who can carry out delegated
tasks in in-home settings are family or unpaid caregivers. This restriction makes it extremely
difficult then for paid home support workers to provide appropriate care to clients in need. Thus,
paying family members to provide care enables the state to still meet the individual’s needs and
not be in conflict with this particular piece of legislation.

Who is “family”?
In terms of who within a family may be eligible for compensation, American jurisdictions also
often have different family compensation policies depending upon whether children or adults are
affected. California, for example, believes that “family members … have less responsibility for
Public Funds, Family Commitment                                                                   13

adults [than for children].” Furthermore it has drawn a line between the family’s responsibility
and that of the State, i.e. “families have responsibility for providing services that they would
normally provide to a minor child without disabilities.”

The California definition of “family” may be unique in that it ignores blood relationships. Instead
it identifies family members as any individuals who:
       ! have a developmentally disabled person residing with him or her;
       ! are responsible for the 24-hour care and supervision of that person; and
       ! are not licensed or a certified resident care facility or foster family home receiving
           public funds.

Kansas and other states also acknowledge parents’ reduced responsibility for those family
members who are 18 years of age or older, including adult children. Compensation is available
– in Kansas, New Jersey and New York for example – to relatives serving as caregivers for
adults with developmental disabilities. Kansas controls costs by providing a maximum of eight
hours/day of service. New Jersey provides vouchers to a maximum of $2400 annually that can
be used for almost any purpose. It also offers eligible clients a choice between a residential
care bed when available (valued at $63,000/year) or an in-home support payment of

At the national level in the United States, the Veterans Administration’s House Bound Aide and
Attendance Allowance programs provide a cash benefit to veterans with disabilities so they may
pay whomever they choose – including relatives – to provide personal assistance. (Blaser,

To summarize, it is difficult and in many cases inappropriate to directly compare the American
experience with the British Columbian context.         None of the conditions noted above are
currently present in BC, nor are they likely to be in the future. British Columbia has an ample
supply of trained workers who are willing and able to do the work, mainly because of wage
levels that are considerably higher than in any American jurisdiction.         In general, British
Columbian programs are far more universal, comprehensive and generous than similar
programs in the United States.

The successful application of American models to British Columbia would likely require a drastic
remodelling of the current system in order to incorporate the restrictions that make the American
models possible.
Public Funds, Family Commitment                                                                    14

3.4       International Models

The literature available for this report indicates that many industrialized countries compensate
family caregivers and acknowledge family caregiving as work that should pay some rational
level of income and should generate some pension benefits.               Importantly, however, the
international models are not necessarily well suited for the British Columbia context. Certain of
these programs, for example:

   !     are administered by the national government rather than by provincial or state

   !     are income tested rather than needs-based, so that only families with very low income
         and virtually no assets are eligible for services; and

   !     have very definite limits regarding the number of hours of service an individual may
         receive, which in most cases means the cost of community care cannot exceed the cost
         of nursing home or other residential care.

These countries’ models generally reflect their own social milieu and public policy context. Each
country – including Canada – is different in this regard.         Sweden for example has a fully
developed social welfare state while Norway has a firm tradition of elder care as a public
responsibility. The United Kingdom has a much more limited concept of the state’s role while
Germany and Australia have a century-old social security net. France has always emphasized
family responsibility. The following provides an overview of policy and practice in a number of
these jurisdictions.

Australia has a long tradition of compensating family caregivers.               The Commonwealth
      Government’s Carer Allowance provides a cash benefit to the family caregiver of people
      requiring chronic at-home care, whether a child, adult or frail elderly person. The program
      requires that the care be provided on a full-time basis that virtually excludes the caregiver
      from participating in the paid labour force. The payment is intended as partial compensation
      and is set at a relatively low rate, i.e. 20% of the single rate retirement pension which itself
      represents about 25% of the average weekly full-time earnings. The allowance is neither
      income nor asset tested and is not taxable.       The Carer Allowance has a co-residence
      requirement. In 1999/2000, the Carer Allowance was paid to almost 195,000 people at a
      cost of A$17.5 million.
Public Funds, Family Commitment                                                               15

   A second national program – the Carer Payment – is means-tested, non-contributory and
   payable to any individual responsible for the daily care of a highly dependent person. The
   caregiver and client need not be co-resident. The benefit level is the same as the retirement
   pension and roughly comparable to the Australian unemployment insurance benefit. It is
   designed to support people who cannot maintain paid employment because of their
   caregiving responsibilities and to signal the state’s recognition of caregiving as work. A
   person cannot receive the Carer Payment and any other Social Security or Veterans’ Affairs
   income support pension at the same time.

   In 1999/2000, 47,550 clients received the Carer Payment at a total cost of A$368 million.
   This represents an increase of 130% over five years with the largest portion of this growth
   occurring in the period 1998/99 to 2000/01.

Austria introduced its Attendant Allowance in 1993. It provides a basic monthly payment set
   according to the assessed level of dependency. The allowance is not means tested, is
   available for any condition reducing personal autonomy and is financed out of the tax
   system. It is intended only to subsidize the cost of care with the remainder coming from
   private sources or social assistance. Indeed Austria caps service at eighty hours/month.

   A program goal is to encourage reliance on family-based home care. The recipient has
   complete control over the Attendant Allowance and can employ family members.
   Recognizing their caregiving responsibilities as real work, Austria permits attendants to opt
   into the country’s pension insurance program.

Finland introduced a Pensioner’s Care Allowance in 1963 as part of its national pension
   system. It is based upon a test of personal need rather than financial means with the benefit
   level being determined by the level of dependency. There are no restrictions on its use. A
   second home support program accords caregivers an income roughly equivalent to that of
   an average pension. It also gives family caregivers access to basic occupational rights and

   Finland’s Social Insurance Institution can also provide parents with both a care allowance
   and special daily allowance if caring for the child gives rise to extra financial or practical
   burdens during a period of at least six months. The special daily allowance compensates
   for the parents’ loss of earnings during time spent caring for the child.

   These payments are one part of Finland’s comprehensive social security system. That
   system includes parenthood allowances, child home care allowances, child care allowances,
Public Funds, Family Commitment                                                               16

   and disability allowances for people with disabilities between the ages of 16 and 64 years
   who are studying or working.

France, after several years experimenting with allowances to the frail elderly, introduced the
   Prestation specifique dependance in 1997. This is a means-tested benefit paid to anyone
   older than 60 years legally resident in the country. The means test considers the resources
   of the recipient’s family and heirs and the benefits provided may ultimately be deducted from
   the recipient’s estate. The benefit can be used either for residential or at-home care. In the
   latter case, the recipient has full control over the funding and may employ family members
   as long as they are otherwise unemployed. Spouses may not be hired as caregivers. In
   France, 30% of all caregivers are family members. (Tilley, 2000:9)

In Germany the cost of long-term care was traditionally covered by a means-tested social
   assistance program “of last resort” administered by local governments. In 1995 the federal
   government assumed responsibility for this support and introduced the Care Insurance Act
   as a compulsory insurance regime providing basic benefits to those in need of care as
   assessed by an expert team. Benefits may be taken in cash or services although the cash
   benefit is set at only 50% of the value of services that would otherwise be provided. In spite
   of this, almost 80% of those who are eligible choose the financial benefit rather than the

   The recipient has full control over the financial benefits and may employ family members as
   caregivers.   Indeed, families rarely go to the regular labour force for caregivers.      The
   German benefit provides caregivers with credits toward their pensions. It should be noted
   that there is a cap of 60 hours/month on the number of hours allocated per individual.

Norway has several programs providing some compensation to family caregivers, as part of its
   concept of eldercare as a state responsibility. In one program the local authority employs
   family members to provide home care to people with special needs. On average, relatives
   are paid for approximately four hours per week at a salary level roughly equivalent to that
   which a full-time professional Home Helper would receive from the local authority. The
   allowances are taxable.

   Norway also provides pension benefits to unmarried and otherwise unemployed family
   caregivers whose ability to support themselves is impaired by their long-term care
   commitment to parents or other close relatives. These benefits cease when the caregiver
   marries or becomes eligible for an old age pension. To date 72% of benefit recipients have
   been women and over 90% have been over 50 years of age. Other programs provide
Public Funds, Family Commitment                                                                   17

      pension credits for caregivers, including parents who stay at home with pre-school children
      or with frail, elderly parents. The credit imputes an income higher than what most employed
      women earn but less than the average income for women in full-time employment. (Keefe
      and Fancy, 1998:23)

      Sweden’s 1990 Care for the Elderly legislation provides family members with caregiver
      salaries that are equivalent to those paid by home health care agencies. They are fully
      taxable.   Caregivers are entitled to both pension and vacation time benefits.          Sweden
      provides training to salaried caregivers when their personal caregiving experience ends.
      Sweden also has a care leave insurance program that continues employees’ salaries for 30
      days if they must leave their employment in order to care for an elderly family member. A
      written application and a doctor’s statement of need are required for these benefits.

      Finally Sweden provides an allowance to parents who are caring for a child under 16 years
      whose functional impairments mean they need special attention and care for at least six
      months. It includes compensation for both the care provided and any additional disability-
      related costs. The allowance is taxable and provides pension credits.

The United Kingdom provides a regular Invalid Care Allowance (ICA) for caregivers including
      family members. The benefit is income tested and available only to those who are both
      unemployed and low income. Caregivers must be pre-retirement age and benefits cease
      once the caregiver receives a pension. The caregivers earn pension rights while receiving
      the ICA. The country’s Home Responsibilities Protection Program provides pension credits
      to caregivers who do not receive ICA but who are providing care for a minimum of 35
      hours/week through a period of 48 weeks. (Keefe and Fancy, 1998:23)

3.5     Observations on Efficacy and Impact

The literature includes some evaluations of health and family support programs that incorporate
a family caregiver compensation element. These evaluations identify both the advantages and
disadvantages of systems that provide payments to family caregivers.


  !      Paying family members expands the labour pool of potential caregivers.               This is
         particularly important in areas where the unemployment rate is low and where there is a
         shortage of people to be employed as personal care workers. This factor has been
Public Funds, Family Commitment                                                                   18

         particularly important in a number of American jurisdictions where there simply are not
         enough caregivers to meet consumer demand. It is not, and is not likely to be, an issue
         in British Columbia.

     !   Family members provide care at relatively low cost compared to non-family members
         associated with community-based or government agencies. Again, this has been an
         important factor in American jurisdictions, where family members are rarely paid at a rate
         above minimum wage.         However expectations of family members, In the current BC
         context, is that they will be paid at the rate of professional caregivers: approximately
         $26 – $27 per hour.

     !   People with disabilities very often prefer to receive their support from family members,
         particularly when personal care services are required.       The UCLA evaluation of the
         California In-Home Supportive Services Program concluded that people receiving their
         services from family caregivers:
          •   feel less risk and greater personal security;
          •   feel they have more choice about how their services are delivered;
          •   are more satisfied both with their ability to choose and with how their service needs
              are being met; and
          •   feel closer to their service provider and are more confident of receiving back up from
              family and friends.

     !   Policies that encourage or support family caregivers help ensure that people with
         disabilities receive their care from someone with an emotional connection and
         attachment.     The Statistics Canada GSS indicates that this attachment is a major
         contributor to quality care. An evaluation of the Illinois Community Care Program also
         suggested that paid family caregivers (i) provide better quality care and (ii) resulted in
         greater consumer satisfaction.

     !   A 1992 Michigan study of 24 family dyads in a family financial compensation program
         found no evidence to support the concern that caregivers will exploit such programs.
         When given a choice, caregivers and care receivers more often chose services over
         financial compensation. The study also indicated that caregivers would provide care
         regardless of financial compensation and would not perform this care unless it was for a
         relative. (Keefe, 1997:257) In contrast, evidence from Germany indicates that almost
         80% of eligible elderly persons chose financial benefits rather than services.5

    Information from the Home and Community Care Branch, MOHS.
Public Funds, Family Commitment                                                                    19

  !    The mortality rate is significantly lower among those elderly who received care from
       subsidized family caregivers. (England, 1989:5-6)

  !    There has been little recent examination of the potential number of families who would
       opt in to a system that allows payment to family members. In the American context of
       low wages, a University of Illinois evaluation (1989) suggests “there would probably be a
       natural limit to the number of elderly who would use this option [i.e., hiring relatives as
       paid caregivers].”


  !    Unless very carefully defined, payments to family caregivers could create an
       uncontrollable drain on public funds and could compromise the home care programs’
       sustainability, particularly if the concern with the “woodwork effect” is substantiated.
       Advocates for persons with disabilities often comment on the high degree of
       supplemental care that families regularly provide at no cost to government, and make it
       clear that if funding were made available they would happily take it.        Although there is
       currently no hard data on this matter, the empirical evidence suggests a large number of
       families would opt in for funding if it was available.

  !    Implementing such a dramatic change in the structure of compensation for caregiving
       without clear study of the financial implications would require a substantial leap of faith in
       an environment of fiscal restraint and economy.          Current levels of funding would likely
       be considerably impacted, and already stand at a total of approximately $824 million
       (see Appendix D for a full account of costs associated with community based health and
       social programs).

  !    Payments to family caregivers would become part of the family’s total income rather than
       a resource targeted specifically to the person with a disability.

  !    Family caregivers receiving compensation would have a vested interest in the life
       choices made by the person with a disability while at the same time having an undue
       influence over the choices made by that person. Conceivably they would have a vested
       interest in keeping the person dependent.
Public Funds, Family Commitment                                                                  20

   !   Compensating family caregivers could further isolate the person with a disability and
       leave them vulnerable to abuse. There would not be non-family caregivers monitoring
       the situation within the household.

   !   Many of the management issues associated with home care – management, training,
       quality assurance, accountability and potential abuse – take on a very different hue if the
       caregiver is a family member. It may be more difficult to ensure that family caregivers
       are adequately trained and providing quality service.

   !   There is also a concern that implementing a system of payments to family caregivers
       could result in the fraudulent abuse of the system.         This has been a documented
       problem, for example in New Brunswick, where the Family and Community Social
       Services Division previously allowed payment to family members for caregiving to
       children and adults. The current prohibition on payment to family members was a direct
       result of the discovery that a number of families were abusing the system and making
       fraudulent claims for compensation.

   !   Compensating family caregivers would have a significant impact on the stability of the
       overall service system, due to the potentially huge increase in expenditures that would
       result from government funding services that have traditionally been provided by families
       at no cost.

   !   Compensating family caregivers would represent a fundamental shift in the balance
       between family and the state with respect to responsibility for the care of persons with
       disabilities. Such a shift would increase the notion of entitlement to funding for what has
       always been considered primarily the responsibility of the family.

   !   Finally, such a shift in public policy could set a far-reaching precedent for a full range of
       social support programming, for example in the areas of child care, health and

   4. Guiding Principles

In this matter, as with all disability-related issues, the government of British Columbia is guided
by the framework set out in In Unison: A Canadian Approach to Disability Issues. In Unison is
the product of an agreement amongst the federal government and all provincial and territorial
governments (except Quebec), and sets out a vision and long-term policy direction that
promotes greater equality for and inclusion of persons with disabilities.
Public Funds, Family Commitment                                                                     21

In Unison sets out a policy framework that is guided by the overall principle of the full inclusion
of persons with disabilities into all domains of Canadian society.           This overall principle is
supported by the following three guiding principles:

 •       Rights and responsibilities: Persons with disabilities have the same rights and the
         same responsibilities as other Canadians. They are entitled, as others are, to the equal
         protection and the equal benefit of the law and require measures for achieving equality.

 •       Empowerment:        Persons with disabilities require the means to maximize their
         independence and enhance their well-being.

 •       Participation:   Persons with disabilities require full access to the social, economic and
         physical infrastructure which supports our society so that they can participate fully and
         equally in their communities.

5. Conclusions

Whether the Government of British Columbia should commit public funds to compensate what
traditionally has been a family commitment is a complex, pressing and difficult question.

     !    The question is complex because it involves the very nature of the family and the
          responsibility of family members for each other. It also involves speculating on how
          compensation might affect personal behaviour and willingness to provide care or request
          compensation.     In addition, the potential outcomes associated with different policy
          options very much depend on the specific design elements of each particular option.

     !    The question is pressing because it involves the health and well being of both people
          with disabilities and their family caregivers, in a context where the ageing of the
          Canadian population will only intensify pressure on an already strained health and family
          support system.

     !    The question is difficult because it involves people – particularly people with disabilities,
          adults with developmental impairments and the frail elderly – who often are both
          vulnerable and dependent. And because it must involve considering the responsibilities
          of different orders of government and different sectors within Canadian society.
Public Funds, Family Commitment                                                                22

   !   In addition, this question arises during a time when the public in British Columbia and
       across Canada are actively searching for alternative methods for program and service
       delivery that are accountable, sustainable and effective.

Clearly families remain the most important source of assistance for people with disabilities,
whether a child, youth or adult. And public policy remains founded upon the belief that public
services and health and family support programs should only supplement and certainly not
replace family responsibility. However, the impact of family responsibility varies depending on
the unique circumstances of the disabled family member. Clearly the demands placed on some
families are disproportionately high.

Health and family support programs, across Canada, embody assumptions that are increasingly
being strained, about families, about the responsibilities and capacities of families, about
informal helping networks and about voluntary groups, communities, and other social
arrangements. However, much of the debate around these issues, and in particular the current
issue of compensation to family caregivers, is taking place without a supporting base of applied
research.   Particularly important in this respect is the issue of the potential cost of a move to
family caregiver compensation.

Central to the creation of any new policy in this area is the determination of scope and role that
government wishes to play with respect to supporting families. This invites consideration of a
number of important policy questions, for example:

  !    what definition of family is appropriate? A BC definition would need to consider legal,
       social and cultural implications within the overall Canadian context.

  !    how should society support family caregiving and family caregivers as well as
       acknowledge the value, importance and benefits of their contribution.          Is financial
       compensation the only option?

  !    How should financial compensation be dispensed (eg. Should it be tied to the purchase
       of specific services or serve as a benefit which acknowledges the ‘uneven playing field’
       of disability)?

  !    if government chooses to implement a new program, is the funding to be found within the
       existing envelope or is funding available for a new program?
Public Funds, Family Commitment                                                                 23

  !    how can programs be structured – and what eligibility tests and assessments are
       appropriate – so as to ensure they remain fiscally responsible and sustainable?

  !    what safeguards can be put in place to ensure quality of care and accountability?

  !    what are the appropriate roles of the different levels of government?

It is clear that given the many counter demands and pressures on both families and government
services, any new policy developed regarding the payment of family members would have to
balance public funds with family commitment.

Historically in British Columbia, government has generally excluded all family members from
being paid with public funds to provide services. In the event that government chooses to
implement a policy permitting family members to be compensated for providing care to other
family members, the policy will need to address some significant considerations.

Foremost the policy must attempt to balance the legal, ethical and moral responsibilities of
families with the appropriate role of the state. Care must be taken to ensure the role of the
family is not undermined and to recognize the need to offset the costs of disability with adequate
support to enable families to continue to provide support voluntarily.

Because this policy will impact people with varying degrees of vulnerability and dependence,
safeguards must be developed to ensure client needs are met in the most appropriate and
effective manner. Effective assessment, monitoring and case review approaches will be
important to the overall success of the policy.

Finally, the policy must respect the appropriate roles of the provincial and federal governments
and be fiscally responsible, balancing the varied demands on government resources and
utilizing those resources in the most effective way possible.
Public Funds, Family Commitment                                                                         24


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Public Funds, Family Commitment                                                                         25

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Public Funds, Family Commitment                                                                           26

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Public Funds, Family Commitment                                                                 27

Appendix A

                               TERMS OF REFERENCE
                           INTERMINISTRY COMMITTEE ON

1. Purpose of Review
      To review government’s role in the provision of publicly funded services to families and,
      in particular, whether it is appropriate for government to provide compensation to a
      family member to provide publicly funded services to another family member.

2. Scope
      Review policies across all provincial government programs that affect the ability of a
      family member to be compensated for providing assistance or care to another family

3. Objectives
      ! To identify government policy where the payment of a family member to provide
          publicly funded services to another family member is prohibited, and any exceptions
          to the policy.
      ! To identify government policy where the payment of a family member to provide
          publicly funded services to another family member is permitted.
      ! To undertake an analysis of government policy in light of the human rights
          legislation, develop options for government and determine implications (financial,
          legal, other) of each option.
      ! To develop a consultation plan.
      ! To develop a cross-ministry action plan.
      ! To seek government approval to proceed with the action plan.

4. Management Structure
     A cross-ministry committee of senior officials will be responsible for overseeing the
     review and developing necessary policy and decision documents.

       a) Committee Membership
       Members will include representation from the Ministries of Health Services, Children and
       Family Development, Human Resources including the Office for Disability Issues,
       Attorney General, and Community, Aboriginal and Women’s Services. Treasury Board
       staff will attend as an observer.

       b) Roles and Responsibilities
       • Members will be responsible for identifying affected policies, determining available
          remedies, and analysing the implications of implementing various approaches
          including financial analysis.
       • Ministry of Health will chair the committee and provide secretariat services.
       • Ministry of Attorney-General will provide legal advice.
Public Funds, Family Commitment                                                                 28

       c) Sign off process
       • All decision documents will be forwarded to the Deputy Minister of Health Services
          for approval in consultation with the Deputy Ministers of the other affected ministries.

5. Deliverables
      ! Action minutes of meetings will be prepared by the secretariat.
      ! Deliverables may include but are not limited to: policy review statements for affected
          programs; draft generic policy statement(s); policy framework; Treasury Board
          Submission, Cabinet Submission; action plan; consultation plan.

6. Timeframe
      ! Committee meetings will be held bi-weekly during the preparation of the decision
      ! The Chair will provide a progress report to the Deputy Chief Commissioner, Human
         Rights Commission, by May 30, 2001.
      ! Preliminary policy review document to the Deputy Minister of Health Services by
         early August, 2001.

7. Resources
      ! Each ministry will provide dedicated staff support to ensure production of required
         materials in a timely fashion.
      ! The cost of additional resources required to meet the committee’s objectives will be
         shared between ministries by journal voucher to the Ministry of Health. These costs
         will be reviewed by the committee before any commitments are made.
Public Funds, Family Commitment                                            29

   Membership List – Inter-Ministry Committee on Compensation for
                    Family Caregivers (IMCCFC)

Dyan Dunsmoor-Farley, Chair, - Ministry of Health Services

Karen Archibald, Secretariat - Ministry of Health Services

Mariann Burka – Ministry of Human Resources

Catherine Gale – Treasury Board Staff

Bonnie Hallas – Ministry of Health Services

Frank Jonasen – Office of Disability Issues, Ministry of Human Resources

David MacPherson – Ministry of Children and Family Development

Ann Marr-Paine – Ministry of Health Services

Fran Pardee – Ministry of Children and Family Development

Steve Reid – Office of Disability Issues, Ministry of Human Resources

Judi Ward – Ministry of Human Resources

Pieta Van Dyke – Ministry of Community, Aboriginal and Women’s Services
     Public Funds, Family Commitment                                                                          30

     Appendix B

                   Parent of       Parent of      Spouse         Adult      Adult Sibling         Adult            Other
                  Dependent       Adult Child     of client      Child        (living in or     Relative
                    Child         (in or out of                (living in   outside client’s    living in
Jurisdiction                         client’s                 or outside         home)           client’s
                                     home)                      home)                             home
British Columbia:
Ministry of Health Services:
  Home Support           N/A            X            X            X                X                X               X
Ministry of Human Resources:
  Home Support            X             X            X            X                X                X               X
      Child Care          X            N/A           X           N/A                                X
Ministry for Children & Family Development:
  Home Support           N/A            X            X            X                X                X               X
  Home Support            X            N/A          N/A          N/A               X                X               X
         At Home          X            N/A          N/A          N/A          X if in home         X if       X if living
          Respite                                                                               dependent     in home &
        (children)                                                                                            dependent
Supported Child           X            N/A          N/A          N/A          X if in home          X               X
          Respite         X            N/A          N/A          N/A               X                X               X
Nursing Support           X            N/A          N/A           X                X                X               X
      Residential        N/A            X            X            X                X                X               X
       Associate          X            N/A          N/A          N/A               X               N/A              X
Family Program
    School Aged           X            N/A          N/A          N/A               X                X               X
     Community            X            N/A          N/A          N/A               X                X               X
     Brain Injury
   (children and
       Training &        N/A            X            X            X                X                X               X
Alberta (Awaiting information)

       This list includes only those programs where some form of care is provided to an individual, primarily in
     their own home, and where the caregivers are usually not professionally trained, like nurses.
       X indicates prohibition in policy or practice
     OTHER would include any other individual related by blood or marriage
     SHADED sections indicate written policy – No shading indicates less formal policy or procedure
     Public Funds, Family Commitment                                                                             31

                    Parent of      Parent of      Spouse         Adult      Adult Sibling      Adult Relative     Other
                   Dependent      Adult Child     of client      Child        (living in or       living in
                     Child        (in or out of                (living in   outside client’s   client’s home
Jurisdiction                         client’s                 or outside         home)
                                     home)                      home)
   (general rules        X              X            X             X               X                 X
New Brunswick
Dept. of Family & Community Services
     Community           X             N/A          N/A          N/A               X             X (even if           X
 Based Services                                                                                outside home)
for Children with
  Special Needs
Long Term Care          N/A             X            X             X               X             X (even if           X
     Services for                                                                              outside home)
      Adults and
Dept. of Health and Community Services
  Home Support          N/A             X            X             X               X             X (even if           X
          (adults)                                                                             outside home)
  Home Support           X             N/A          N/A          N/A               X                 X                X
Nova Scotia
Dept. of Community Services
         In-Home        N/A             X            X        X (inhome)           X
Support (adults)
         In-Home         X             N/A          N/A          N/A               X
Ministry of Community and Social Service
          Special       N/A          Permitted    Permitted   Permitted        Permitted         Permitted      Permitted
      Services at
  Home (adults)
          Special        X             N/A          N/A          N/A          X (“family         X (“family      X (“family
      Services at                                                            members”-not       members”-not    members”-
Home (children)                                                                defined)           defined)      no defined)
Prince Edward Island (no information available)
Ministry of Health and Social Services
          Respite        X              X            X             X          X (“family         X (“family      X (“family
         Program                                                             members”-not       members”-not    members”-
                                                                               defined)           defined)      no defined)
Department of Social Services
                                                                                                                   X (if in
        Support         X             N/A           N/A          N/A               X                 X             home-
Services-respite                                                                                                 family not
      (children)                                                                                                  defined)
                                                                                                                   X (if in
 Developmental        N/A              X             X          X (if in     X (if in home)          X             home-
resource homes                                                  home)                                            family not
                                                                                                                   X (if in
 Adult programs       N/A              X             X          X (if in     X (if in home)          X             home-
                                                                home)                                            family not
  Public Funds, Family Commitment                                                                                            32

  Appendix C
                              CLIENTS AND EXPENDITURES
 Ministry           Program Name                           Clientele                   Year      No.*        Year      Expenditure/
                                                                                                Clients                 Budget***
MHS            Home Support                   19+ chronic health problem,             99/00      41,418     98/99      $216,477,944
               CSIL                           disability                              00/01         436     00/01      $ 22,000,000

               Home Care Nursing              Any age, short term or long             99/00      36,914     99/00       $28,875,000
                                              term health problem
MCFD           Training & Support             Adults with developmental               01/02        8,326    01/02      $133,440,000
               Programs                       disabilities
               Residential Services                                                   01/02        5,604    01/02      $365,000,000
               Homemaker/Home                 Families of children with               Spring         221    01/02      $1,841,558++
               Support                        special needs
               At Home Respite                Families of children with               Spring       3,459    01/02      $ 8,331,264++
               Program                        severe disabilities who are
                                              being cared for at home
               Supported Child Care           Children aged 12 and younger            Spring       4,530    01/02     $35,830,000++
                                              who require extra support in
                                              child care setting because of
               Respite Services               Families with children who              Spring       1,342    01/02      $5,667,031++
                                              have special needs
               Nursing Support                Children with exceptional               Spring      769+++    01/02         $4,065,000
               Services                       health care needs and their
               Associate Family               Children with multiple                  Spring          44    01/02      $2,289,055++
               Program                        disabilities living in institutions
                                              on a full or part-time basis
                                              whose health care needs can
                                              be safely & effectively met in
                                              the community and whose
                                              natural families are unable to
                                              assume ongoing care for them
               School-Aged Therapy            School-aged children with               Spring       4,177    01/02         $484,167++
               Services                       special needs
               Community Brain Injury         Children and youth with                 Spring          75    01/02            $500,000
               Program for Children           acquired brain injuries when
               and Youth in BC                no other funding is available
MHR            Homemaker Program                                                      00/01        810**    00/01         $1,400,905

TOTAL:                                                                                           89,268                $824,801,019

  *MCFD Clients in Residential Programs are also involved in Training and Support Programs and have been counted only once; and
  number of MOHS home support clients who receive home care nursing have only been counted once .
  **# Clients for Homemaker Program is an estimate only – the actual # is not captured anywhere.
  ***Expenditures for CSIL and Home Care Nursing, MHS, are estimates only: home care nursing estimate based on $75/hour, ½
  hour visits, 770,000 visits in 99/00; CSIL estimate based on 436 clients with 70,393 authorized hours x $26/hr.
  Information available at this time varies depending on program – some is expenditure, some is budget.
  + Numbers of clients in the MCFD programs is a one time snap shot. Annually numbers will be higher.
  ++ These figures represent the budget for 2001/2002.
  +++ NSS is in the process of finalizing a data base and data entry is not complete – numbers may change.

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