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					               Final Report
          Community Consultation
          Caring for Carers Policy


                  Appendix E




Conducted for Department of Disability, Housing and
               Community Services
                ACT Government


               By Artcraft Research




                    July 2003
                                                       Table of Contents
                                                                                                                                           Page

EXECUTIVE SUMMARY ........................................................................................................... 1

1      INTRODUCTION.................................................................................................................. 5
    1.1       BACKGROUND ................................................................................................................... 5
    1.2       OBJECTIVES ...................................................................................................................... 5
2      CONSULTATION FINDINGS............................................................................................. 6
    2.1     AGREED DEFINITION OF WHO IS A CARER ......................................................................... 6
       2.1.1    A Carer Definition ................................................................................................... 6
       2.1.2    What does Caring Cover .......................................................................................... 8
       2.1.3    How to Refer to Carers ............................................................................................ 8
    2.2     AGREED PRINCIPLES UNDERPINNING THE CARERS POLICY ............................................. 11
       2.2.1    The Nine Principles in Outline: ............................................................................. 11
       2.2.2    Discussion of the Principles: ................................................................................. 12
    2.3     WHAT SUSTAINS CARERS? ............................................................................................. 37
    2.4     THE NEEDS OF CARERS ACROSS KEY TRANSITION POINTS IN THE CARE-GIVING LIFESPAN
            41
       2.4.1    Some Key Transition Points ................................................................................... 41
       2.4.2    Identifying the Future Carer .................................................................................. 42
       2.4.3    During the Caring Period ...................................................................................... 43
       2.4.4    Supporting the Former Carer ................................................................................ 46
    2.5     ACCESS BARRIERS TO EXISTING CARER AND MAINSTREAM INFORMATION AND SUPPORT
    SERVICES, AND SOME SUGGESTED SOLUTIONS. .......................................................................... 47
       2.5.1    Lack of Awareness of Information and Services .................................................... 47
       2.5.2    Lack of (or Limited) Service Availability ............................................................... 49
       2.5.3    Eligibility Barriers ................................................................................................. 50
       2.5.4    Feedback Barriers ................................................................................................. 52
       2.5.5    Equity Barriers....................................................................................................... 52
       2.5.6    Information Barriers .............................................................................................. 55
       2.5.7    Attitudinal, Social and Cultural Barriers .............................................................. 56
       2.5.8    Economic Barriers ................................................................................................. 57
3      CONSULTATION METHODOLOGY ............................................................................. 59

APPENDIX: ORGANISATIONS WHO PARTICIPATED IN THE CONSULTATION
PROCESS ..................................................................................................................................... 61
Executive Summary
Community consultations were conducted by Les Winton, Managing Director of Artcraft
Research, between 19 May and 11 July 2003 with a wide range of carers, people being
cared for, service providers, peak organisations and other stakeholders, to assist with
development of a ‘Caring for Carers’ Policy and a Carers Act, on behalf of the ACT
Department of Disability, Housing and Community Services and the Carers Advisory
Group.

The overall objectives of the consultation process were to identify:

    1. An agreed definition of who is a carer;

    2. Agreed principles underpinning the carers policy;

    3. What sustains carers?

    4. The needs of carers across key transition points in the care-giving lifespan; and

    5. Access barriers to existing carer and mainstream information and support services.

This executive summary presents the main consultation findings which are discussed and
clarified in the body of the report.


An Agreed Definition of Who is a Carer

For the purposes of this Caring for Carers policy, a Carer is defined as:

Any person who provides (or has provided, or is likely shortly to provide*) ‘unpaid’, ‘informal’ care and
support to a parent, partner, adult or young child, sibling, extended family member, relative, friend or
community member who has a disability#, is (frail-)ageing, has a physical or mental illness, has emotional
or behavioural difficulties, or is affected by substance abuse. * This definition includes future and
former carers.

A disability is defined as a physical, sensory, intellectual, psychiatric or neurological
disability.
This definition excludes those people providing care to relatives or friends who do not
have a disability, illness, substance abuse issue or needs associated with ageing.


Principles to Underpin the Carers Policy

The following principles have been developed out of the consultations and are explained
in the body of the report.

1.   The valuable role and contribution made by unpaid, informal carers should be
     publicly recognised, applauded and respected.

2.   It needs to be recognised, understood and acted upon that the most important need,
     of the carer is to be certain that the person being cared for is provided with
     adequate, quality and accessible support.

3.   Carers are a very heterogeneous group with diverse needs for assistance and support.
     Carers need individualised and flexible support that is sensitive to the caring
     relationship (ie, carer and person receiving care), type of disability or chronic illness,
     stage in the caring lifecycle, age, gender and socio-economic and cultural
     background.

4.   The carer and the person being cared for should be regarded as a partnership or
     single unit, with the same rights and dignity afforded to both. This partnership
     needs to be recognised and respected, and carer participation should be facilitated in
     all decision-making related to the care situation, while balancing the consumer’s
     rights to privacy and the carer’s need to know.

5.   There is a need for organisational cultures to be welcoming of carer participation.
     There is a need to enhance communication between professionals, service providers,
     and carers, and the encouragement of a collaborative and team-based approach.

6.   Support resources that can play a significant role in reducing the negative impacts of
     care-giving and maximising its effectiveness, need to be expanded. Future planning
     should take account of the intensity of care provided and the key transition points in
     the caring relationship.
7.    The impacts of the Carers Policy on carers and people receiving care should be
      evaluated over time.

8.    The role of the carers, former carers and other community minded citizens, in
      providing support and help to other carers, needs to be more effectively recognised
      and utilised.

9.    The right not to care should be fundamental. Carers have the right to decide
      whether they can take on or continue the role of a carer.

What Sustains Carers?

    Adequate support for the person they are caring for.

    Awareness, understanding and ability to access a whole range of support services,
     particularly respite for the carer or care recipient; information and skills, subsidised
     and/or specialised transport services; home care support of a nursing kind; home help
     of a repair and maintenance kind (eg, lawn mowing, help with washing and ironing,
     etc); counselling both for themselves and/or the person they care for; mutual support;
     social and recreational support; support to access and maintain participation in
     employment and education.

    Contact with other people outside the caring relationship, including other carers.

    Participation in employment, education and community life.


The Needs of Carers Across Key Transition Points in the Care-
giving Lifespan
There is growing recognition that policy measures responsive to the diversity of
caring roles, and geared around key transitions, are likely to be most effective in
supporting carers through changing circumstances. The consultations reinforced
this view.

Future carers
 Early warning of a future need for care (eg, rapid deterioration in mobility;
   diagnosis of debilitating illness, etc)
During the caring period
 At the onset of disability, illness or addiction – at birth or later in life
 Time of diagnosis (which may occur well after onset) ·
 From home to school
 From school to work
 On discharge from hospital or supported care facility
 Moving to other states or overseas
 Between service or system types (ie. from children’s to adult services, or from
  disability system to the aged care system).
 When a person leaves the workforce due to illness or accident
 As illness or disability progressively worsens or improves over the life course
 Moving to independent living or institutional care
 When the carer needs to give up the caring role (through illness, becoming frail-
  aged, when caring is beyond their capacity, or on their death).

Supporting the former carer
 At the end of care (when the person being cared for dies or moves into supported
  care or overcomes their illness/disability to the extent of no longer needing a
  carer).·
 Re-establishing the carer in community and work life.


Access Barriers to Existing Carer and Mainstream Information
and Support Services, and Some Suggested Solutions.
The following are confirmed from the consultations as barriers that appear to affect the
utilisation of support services by carers. These barriers are described and discussed in
detail in the body of the report.

      lack of awareness and access to information and services

      limited service availability

      eligibility barriers

      organisational cultures not welcoming of carer participation

      equity barriers

      information barriers

      attitudinal, social and cultural barriers

      economic barriers
1 Introduction
1.1 Background
Prior to its election in October 2001, the ACT Government committed to:
   Develop a comprehensive ‘Caring for Carers’ Policy, in consultation with community
    organisations, which will seek to acknowledge Carers and address their needs;
   Note the needs of Carers who are children and undertake to progress legislative
    provisions for their support and protection; and
   Work with Carers and support organisations to develop a Carers Act that serves the
    interests and rights of individual Carers while recognising the needs of Carers from
    diverse backgrounds and situations.
1.2 Objectives
The ‘Caring for Carers’ Policy is being informed by multiple methods of consultation and
research, through the following project terms of reference:

1. Identify, quantify and develop a comprehensive profile of carers in the ACT;
2. Identify evidence based research, both locally and internationally, regarding effective
    interventions which sustain the care-giving relationship;
3. Develop agreed definitions and principles;
4. Identify the needs of carers across key transition points in the care-giving lifespan;
5. Identify access barriers to existing carer information and support services;
6. Develop a service framework and strategic plan for improving resources to carers
    taking into account current resource usage, potential resource demands and future
    workforce requirements; and
7. Develop recommendations on how legislative change can support the needs and
    rights of carers, including young carers and carers from diverse backgrounds and
    situations.



To assist with the consultation process, a discussion paper was developed by the Carers
Advisory Group in accordance with the overall project terms of reference. The paper
included an overview of carer policies operating in other jurisdictions; explored issues for
carers; and posed questions for consultation. A copy of the paper is at Attachment A.

2 Consultation Findings
2.1 Agreed Definition of Who is a Carer
Precisely who should be included in, and excluded from, the definition of a carer is a
crucial starting point for developing any Caring for Carers policy in order to be clear
about whom it is intended to benefit, and also about who is expressly excluded from
coverage.


2.1.1 A Carer Definition
From the consultation process, a clear consensus emerges for a definition of a Carer
which is fairly precise but also quite inclusive at the outset (ie, so as not to exclude anyone
relevant in broad terms in the first instance), but that there should be some statement of
priorities in planning, so that those who most need recognition or assistance are given
highest priority. Slight modification of the broad definition provided in the discussion
paper meets the first of these criteria, and allows the priorities to be developed at the
policy implementation stage, as follows:

For the purposes of this Caring for Carers policy a Carer is defined as any person who
provides (or has provided, or is likely shortly to provide*) ‘unpaid’, ‘informal’ care and support to a
parent, partner, adult or young child, sibling, extended family member, relative, friend or community
member who has a disability#, is (frail-)ageing, has a physical or mental illness, has emotional or
behavioural difficulties, or is affected by substance abuse. * This definition includes future and
former carers for reasons detailed in the section on key transition points in the care-giving
lifecycle.   #   For the purposes of this working definition, A disability is defined as a
physical, sensory, intellectual, psychiatric or neurological disability.

This definition can then be prioritised in relation to those most in need of assistance and
information in terms of a number of factors including means-testing (regarding
government assistance), the degree of disability or incapacity of the person being cared
for (regarding entitlement to, and levels of intensive support services), evidence of the
stress level of the carer (regarding respite and other assistance and support), and the
length of caring/waiting (regarding allocation of scarce resources and services).

       “They need to be spending more than an average amount of time – above what is
       normally expected of any parent – before services are made available.”

       “If there need to be waiting lists, then those waiting the longest deserve to be helped first,
       unless someone else has a more compelling need.”

       “What about someone who simply visits old people to give them company and maybe does
       a few chores? I think they should be included in the definition, but you’d give them a
       much lower priority than carers who do the lot.”

The definition does not include volunteer carers arranged by formal care services, nor
paid care workers (or anyone who is paid a wage or fee for their services). The definition
does include those people who care for a relative or friend without payment other than
perhaps a pension or benefit.

The definition also does not include reference to care of a child or young person who
does not receive care from their parents or the state (reference to these kinds of kinship
carers was included in the definition in the discussion paper). It was felt that the
definition should exclude this group as the additional support was not provided on the
basis of ageing, disability, illness or addiction (the necessary conditions for all other types
of Carers covered in the definition). While it would seem that this group is not
recognized by other policy frameworks (whereas foster parents are recognised), their
inclusion in our definition may diminish resources available to other carers in need.
Rather, their existence is acknowledged here and other Departments are requested to
further investigate a specific policy response.

       “It should exclude ordinary parents or grandparents with ordinary infants. They may be
       having difficulties coping financially or otherwise, but they are not carers in the traditional
       sense.”
       “When you come down to it, every mother of a child under about two years of age could
       be thought of as having the same role as a carer (ie, totally responsible for a dependent
       person), but they don’t fall within the definition of carer if the child is ‘normal’. The
       problem for me is that many children with mild disabilities are essentially normal – how
       do we define the cut-off point of severity of disability where a parent also becomes a
       carer?”


2.1.2 What does Caring Cover
The term carer encompasses a diversity of experiences and situations.

Carers provide emotional support and practical assistance to the person being cared for
with tasks such as the administration of medication, toileting, transport, clerical assistance,
mobility and personal care.

Care may be provided either in the home of the carer or of the person receiving care.
The carer can live with the person they care for, or somewhere else.

Caring may be long term, short term or episodic (as in the case of many people with
mental illness).

Caring may be provided by one primary or main carer, or by an extended group of carers.

       “In our case, the whole family is involved. Although I suppose mum spent most time
       with him, we all pitch in so he has a variety of experiences and so that mum can have a
       rest sometimes knowing that he’s in good hands.”


2.1.3 How to Refer to Carers
The Carer definition outlined above refers to ‘unpaid’, ‘informal’ carers, primarily because
we have not yet found a more effective way of differentiating them from paid carers.
However, it should be noted that neither carers, nor the people they care for, nor service
providers, are happy with these or other terms in use.

       “In fact, I don’t see why we need a label at all, we are just ordinary families doing what
       ordinary families do, caring for our own.”
The term ‘unpaid’ carer is confusing and not strictly correct, as many carers receive a
pension, or a carer payment or allowance, or even an allowance (eg, pocket money, free
board and keep, assistance with bills, free use of a car, etc) from the person being cared
for (or other family members), and therefore do not see themselves as ‘unpaid’.

         “If I wasn’t looking after her, I’d still be working, but when I resigned to look after her I
         was able to get a government allowance for doing that, so in a sense they are paying me
         for resigning to care for her.”

The term ‘informal’ carer does not sit well with many carers who maintain that they are
very serious and controlled and ‘formal’ about what they do.

         “There’s nothing informal about administering medication.”

The term ‘voluntary’ carer is inappropriate, and even offensive to some carers, who are
adamant that they did not volunteer for the task.

         “I was the only girl in the family, so guess what? When mum and dad got sick, I was
         elected to go and care for them. I would have preferred not to, but I was outvoted.”

         I didn’t volunteer to have a child with Downs Syndrome. I love her and I enjoy helping
         her, but I didn’t ask for this kind of life.”

The term ‘family’ carer works well where the carer is part of the (immediate) family, but
does not apply to friends or neighbours or other community members. Also, some
people do not see the term ‘family’ carer applying where the carer is related to the person
being cared for, but is not regarded as part of the immediate ‘family’ (eg, a cousin or
aunt).

         “My cousin cares for me because I have no brothers or sisters and mum and dad are
         dead. She has her own family, I’m the only one left in my family, but it’s great she’s able
         to care for me as well as her own family.”

         “I have a son in a wheelchair and I also look after an old lady in the next flat who’s too
         weak to look after herself a lot of the time and has no family. I can see how you’d call
       me her carer, but I’m my son’s mother so I can’t see how I can be his carer, that would be
       what you’d call somebody from outside the family.”

To use the term ‘professional’ carer to describe paid carers is also offensive to many
carers as it implies that they are unprofessional, a serious implication as many see
themselves as providing a more professional service than some paid carers whom they
have encountered or heard about.

       “Some of the carers they’ve employed in the group home have been untrained university
       students, employed on a casual basis with no experience to speak of … they’re hardly
       professional carers.”

       To some of the carers who have looked after mum, it’s been just a job, whereas I take the
       role very seriously. I think I’m much more professional than they are.”

The position of ‘hidden’ carers further complicates the issue, because these people do not
identify with the term ‘carer’, either because it has not occurred to them yet (“I’m his
mother/wife/daughter/friend, not his carer”) or because many of them have rejected it.
When asked if they are a carer, almost all of these people will say ‘no’, and hence they will
not pay attention to any communications or information addressed specifically to carers
(including a carers policy!). On the other hand, if asked whether they care for or help
someone, they will generally answer ‘yes’. To reach all carers, communication needs to
start out by saying something along the lines of: “Do you care for or look after someone
who is frail-aged or has a disability or illness (etc) – sometimes they are called carers. If
you do, we can assist you/provide you with information …”.

           “I nursed dad for the last ten years of his life, and I still help many of his old
           neighbours, but I’ve never thought of myself as a carer … it’s just what I do, who I
           am.”
2.2 Agreed Principles Underpinning the Carers Policy
A series of nine broad principles that might underpin the Carers Policy have been
developed, based on the consultations. These broad principles are outlined briefly below,
and then described and discussed in some detail:


2.2.1 The Nine Principles in Outline:
1. The valuable role and contribution made by unpaid, informal carers should be
   publicly recognised, applauded and respected.

2. It needs to be recognised, understood and acted upon that the most important need,
   of the carer is to be certain that the person being cared for is provided with quality,
   adequate, and accessible support.

3. Carers are a very heterogeneous group with diverse needs for assistance and support.
   Support needs to be sensitive to the carer/care receiver’s relationship, type of
   disability or chronic illness, stage (or transition point) in the caring lifecycle, age,
   gender and culture.

4. The carer and the person being cared for should be regarded as a partnership or single
   unit, with the same rights and dignity afforded to both. This partnership needs to be
   recognised and respected, and carer participation should be facilitated in all decision-
   making related to the care situation, while balancing the consumer’s rights to privacy
   and the carer’s need to know.

5. There is a need for organisational cultures to be welcoming of carer participation.
   There is a need to enhance communication between professionals, service providers,
   and carers, and the encouragement of a collaborative and team-based approach.

6. Support resources that can play a significant role in reducing the negative impacts of
   care-giving and maximising its effectiveness, need to be expanded. Future planning
   should take account of the intensity of care provided and the key transition points in
   the caring relationship.

7. The impacts of the Carers Policy on carers and people receiving care should be
   evaluated over time.
8. The role of the carers, former carers and other community minded citizens, in
   providing support and help to other carers, needs to be more effectively recognised
   and utilised.

9. The right not to care should be fundamental. Carers have the right to decide whether
   they can take on or continue the role of a carer.

2.2.2 Discussion of the Principles:

PRINCIPLE 1: The valuable role and contribution made by ‘unpaid’, ‘informal’
carers should be publicly recognised, applauded and respected.


Participants considered that caring relationships should be widely promoted in the community.
It was noted that at some stage during their lifetime, the majority of people will provide care
and/or receive care.

Carers make a significant contribution to the economic and social fabric of the
community. Informal carers are the main providers of support for people who have
disabilities, mental or chronic illness or needs associated with ageing. According to the
1998 ABS Survey of Disability, Ageing and Carers, 74% of people who needed assistance
with self care, communication, housework and meal preparation were assisted by
‘informal’, ‘unpaid’ carers. This data shows that in the ACT there were 43,100 ‘informal’
carers, that is, one in seven people in the ACT are carers.

‘Unpaid’ family carers and other ‘informal’ carers should be recognised and acknowledged
as fundamental to community care and well-being.

       “I do it because I’m his mother, but sometimes I think I get treated as a nobody because
       all the attention is given to him and his needs. If carers were better recognised for what
       they do, maybe it would be more easily understood that they have needs, too.”

Carers are fundamentally important to society, to the people they care for, to care
organisations, and to the government.
        “I know many of us do it because we are family and that’s what families would do
        anyway, whether we want to be called carers or not, and I went down that path for a
        while, but unless we are recognised for the additional effort we put in over and above the
        effort all families make, then we run the risk of being taken for granted, and therefore
        not needing any extra support.”

There are substantial economic savings made to the community because of the unpaid
work of carers. Conservative estimates put savings to the Australian community at $16
billion per annum. On a pro-rata basis, this means savings to the ACT community in the
order of $260 million per annum.

“I had no idea our contribution was worth that much. This fact should be advertised very publicly to
warn governments about how lucky they are, and not to cut what few services there are.”


PRINCIPLE 2: It needs to be recognised, understood and acted upon that the most
important need, of the carer is to be certain that the person being cared for are
provided with adequate, quality and accessible support.


Carers strongly expressed that the person they care for, need support which is readily
accessible, responsive, timely, coordinated, innovative, flexible, cost-effective and
appropriate to needs. Almost all carers participants clearly consider the needs of the
person being cared for above and ahead of their own needs.

        “You keep asking me what are my needs as a carer specifically, and I keep saying my
        needs are irrelevant if he (the person being cared for) isn’t receiving the care and attention
        he needs. What you have to understand is once you become a carer, in a sense you become
        part of them, you suppress your own needs for them, and you do whatever you can to help
        them, that’s the difference between being a normal mother and the mother of a child with
        a disability.”

        “Once you take on the role of a carer, you essentially become preoccupied with the
        wellbeing of the person you are caring for. Unless and until their needs are looked after
        properly, you can’t really think about yourself, or I can’t anyway.”
       “Maybe once a month I get a bit of time to myself, the rest of the time if I’m not tending
       to John, I’m thinking about what we need to do next or where we have to go. My life is
       not my own most of the time, but I’d rather he be happy, because if he’s happy, at least I
       can relax for a little while.”

       “They kept trying to put all these things in place to help me as a carer, but all I wanted
       was for them to do more to help my mother. They seemed to think I was more important
       than my mother.”

Participants expressed concern with a lack of appropriate and timely respite services (for
both carer and care receiver), lack of aged care beds, inflexibility of (particularly duration
and starting/finishing times of) both child and adult day-care facilities, and concerns
about the selection, training and supervision of (paid) support staff in relation to various
facilities and services (eg, group homes, aged care, respite) were among the most frequent
criticisms. A recent review of respite services and newspaper articles about the shortage
of aged care beds indicate that these two concerns are real, and earlier concerns about
group homes have not gone away.

           “We found out that she (woman in her thirties) was being bathed by two young male
           workers at the group home – they weren’t even trained, they were casual staff. It was
           totally inappropriate.”

           “High staff turnover means that you have to explain things over and over again, and
           there’s no chance for Bill to get used to them.”

           “I’m trying to find an aged care bed for my mother, but there aren’t any and I can’t
           even get on the waiting list. We’ve looked as far as the Coast, and there still aren’t
           any.”

The carers policy needs to be linked with other policies including disability, aged care,
mental health, education, the social plan, to reflect and respond to the partnership
between carers and the people they care for, and as well to have the role of the carer (and
others who perform a caring role if they do not wish to be labelled as carers) recognised
in those other policies.
           “We are only carers because someone needs caring for, and their needs are our main
           concern. You can develop a policy for us if you want to, but unless other departments
           change their views and help our people better than they are now, it won’t really help
           us a lot.”

           “As a young carer, I didn’t want to tell anyone at school in case I was picked on.
           And even when they did know, some of the teachers weren’t sympathetic. The schools
           need to be told what they can do to help us, at the moment they don’t really know
           what to do with us.”


PRINCIPLE 3: Carers are a very heterogeneous group with diverse needs for
assistance and support. Carers need individualised and flexible support that is
sensitive to the caring relationship (i.e. carer and person receiving care), type of
disability or chronic illness, stage in the caring lifecycle, age, gender and socio-
economic and cultural backgrounds.

Carers range from 9 years (or less) to 90 years (or more), can be either gender (although
mostly female), from a very wide range of socio-economic and cultural backgrounds, and
are caring for people with varying degrees of a very diverse range of conditions, illnesses
and disabilities. Only around one-third of carers readily identify with the term carer, the
majority either do not see themselves primarily as carers, or reject the ‘label’ altogether.

Support needs to be flexible, and sensitive to the age of the carer.


Young carers:

Young carers have additional needs (particularly for flexibility) in relation to their social
and educational development and experience difficulties in making transitions to
independence. While some are in touch with organisations offering assistance and
support, it is reported that the proportion of ‘hidden’ carers may be much higher among
younger carers, than among other age groups.
Among the issues raised by younger carers, are the following: not being taken seriously
by health professionals, teachers, and adults generally; a lack of recognition among other
young people about their caring role, being concerned about whether to talk to anybody
about their situation, for fear of reprisals including being taken away or having their
parents take it out on them if they find out; concerns about what will happen to them
when the person being cared for dies or goes into supported care; issues about limited
finances and school expectations in terms of fees, excursions, and so on; and concerns
generally about what they are missing out on in the way of growing up.

       “In some ways I’m so much more mature than my friends at school, but in other ways I
       know I’m behind – like I could care for my mum very well, but when she died, I realised
       I didn’t know how to look after myself very well.”

       “I’ve found with this group that when we’ve taken the plays into schools and spoken
       about our experiences, everyone listens. They don’t listen to what adults say about us,
       but they will listen to us. When they come us afterwards and tell you how much it meant
       to them, you know it has made an impact.”

Regular contact and social interaction with other carers may serve to support both parties,
with the young carers assisting in various ways and benefiting from the skills and
experience of other carers.

Several service providers have also expressed concerns about the health and safety of
young carers, and whether they should be in a caring role at all.

       “This is an equity and fairness issue for young carers, as it is a child protection issue that
       young people under the age of eighteen are in a carer’s role. This needs to be explored as
       young people are children first and carers second …(also) young carers payments start at
       a very young age … if a young person under the age of sixteen claims young carer
       payments, the case is looked at and other benefits are paid, overlooking the fact than an
       eight year old is providing services that they perhaps should not be.”

       “I started learning to clean the house when I was very young, about two, I think.”
Male carers:

Due in part to the fact that fewer of them, and also because (particularly in younger age
groups) it is often assumed that a woman will adopt the caring role, male carers are often
not identified, and their sometimes different needs are not taken into account. The role
of the male as carer needs to be recognised, and responded to accordingly.

       “Many of the services are staffed mostly by women, and you tend to find most of the staff
       in aged care and nursing homes are women, at least in my experience, and most carers
       seem to be women. I think that’s why men have more difficulty with the system – they
       are a lot more used to dealing with women in a caring role.”

Carers of working age:

Carers of working age, who want to work, often need flexibility in workplace
arrangements including options regarding working hours and practices, training support
to re-enter the workforce, upgrade their skills, or simply to participate in an aspect of
community life outside home and the caring relationship. Many carers expressed the
need for the person receiving care, to have access to day options, such as employment or
day activities, during working hours. It was noted many day activity services closed at
3 pm, and this presented a barrier for carers who wanted to participate in full time
employment.

Carers who are currently in the workplace also need recognition and support in the
workplace. There is a need for broad communication addressed to employers and
workers generally, aimed at ensuring that this happens.

       “Why is it that when you are expected to work from 9 to 5 yourself, care centres only
       work till about 3 o’clock? And isn’t it about time schools stayed open later, too.”

       “I know of carers having got together to pool their resources to help those of them who
       have to work, but they shouldn’t have to do that – the services should be put in place as a
       matter of course to meet the needs of anyone with children who also has to work, not just
       children with a disability.”
       “My concern is that having a child with schizophrenia, which is an episodic illness, I
       never know when I will need to take a few days off. I don’t expect to be paid when I’m
       not working, but I do need the flexibility to leave whenever I need to and take days off
       without notice. My previous boss was very kind and accommodating this way, but I
       think my current boss is going to ask me to leave if it happens again, and I can’t afford
       not to have a job at all.

Siblings:

Although often not the primary carers, siblings also frequently spend much time and
energy in assisting with care. Many participants expressed concern about the impact and
stress of caring on siblings. At other times, the needs of some siblings can be overlooked,
because of the focus of the primary carer on the person being cared for.

       “There are times when I can’t really blame the other children for being upset, I haven’t
       been much of a mother to them recently, and I can’t see that changing for a while, now
       that my husband has had to take a second job to make ends meet.”

Ageing carers:

Ageing carers are more likely to experience disability or illness themselves and may have
additional needs associated with health, housing and transportation. There is a call for
mechanisms to be put in place to identify and meet these additional needs in a timely
fashion.

       “You can’t stop getting old, but you can prepare for it. I was lucky to know this early
       on, so I’ve fared OK, but I’ve taken it upon myself to help a lot of other older people
       who’ve left it too late in some cases to benefit much from existing services, so I fill in the
       gaps for them. But who’ll do it when I go?”

Indigenous carers:

Support needs to be sensitive to the cultural context in which caring occurs. The
experience of caring varies across cultures, for reasons including different levels of
informal support from families and friends, different values placed on individuality as
compared with familial consensus or elder-leader authority and different expectations
about family responsibilities.

This is particularly so for Indigenous carers and their families, and members of their
communities who have settled here in the ACT, who generally wish to be cared for at
home, and for services to be provided by their own people wherever possible.

       “You’ve got to understand us, we have always been close-knit communities and we look
       after our own, everyone in the community is treated as family so we don’t think in the
       same terms you do.”

       “We like to go home and die in our own spiritual ground … We like to be with our
       own, and this needs to catered for in nursing homes and aged care places … We like to
       take respite in our own homes with family …We need to be grouped together in public
       housing … replacement of the 6 units allocated at Burnie Court is badly needed.”

There is a perceived lack of culturally appropriate services, and particularly of those
providing a holistic service to the carer and the person receiving care. This is particularly
the case here, where there seem to be many co-dependent families (eg, where husband
and wife or father and son are both people receiving care from, and caring for, each
other. Some Indigenous services are available but there is a need for significant
expansion. In the meantime, cross-cultural training of non-Indigenous services would
help, and in particular, acknowledging and acting on recognised differences in terms of
earlier onset of illness and death. The appointment of an Indigenous person by Carers
ACT is seen as a move in the right direction by the community.

       “There are enough of us here in Canberra and Queanbeyan to have our own services, and
       the one here (Ngunnawal Aboriginal Corporation) does a great job. But they could always
       do more if they had more funding. And something has got to be done to sort out a
       partnership arrangements between the ACT and NSW for our Queanbeyan people.”

       “Look up the statistics and you’ll find that we die about 10 to 20 years younger than
       you white people, and a lot more of us suffer from strokes and other heart problems and
       diabetes, and the effects of alcohol and substance abuse. That’s as it is and so we need to
       be looked at differently than others when it comes to eligibility ages for pensions and other
       support and for treatment of illnesses. They need to lower the age 65 limit, and recognise
       that we will need more and more services as we get sicker.”

        “Carers ACT has recently taken on one of our people, and I hope that will improve
       understanding of our special needs. We aren’t sure of the choices or the roles and
       responsibilities of services in general. There is a need also to employ Indigenous people in
       other large central services (Hospital) and providing culturally appropriate literature.”

Efforts to make the home more comfortable and safe for the carer and the person
receiving care are also requested, including ramps, lifting devices, rails for showers and
toilets. Many Indigenous carers and people receiving care would like respite to be
available at home as an option, with the ability to employ other Indigenous people,
including relatives. Home cleaning and maintenance is also seen as an important service
for those unable to do it for themselves. Accessing economical transport is also an issue.

It was suggested by carers that there is a real need for education and training. Among the
skills that they would like to be able to learn are the following: CPR; how to recognise the
signs of heart attacks and strokes, the signs of (poor management of) diabetes; how to test
blood sugar levels and help with insulin; and issues with early onset of dementia. Skills in
nutrition and various aspects of personal care and hygiene (eg, dealing with bedsores)
were also mentioned. Certificates and other recognition of skills acquisition should be
provided where appropriate to help these and other indigenous people obtain work in
mainstream services and further their careers.

Reaching deeper into the community to encourage younger people to help more, and also
to reach the hidden carers are also raised as initiatives that need to be pursued.

       “Our carers are middle-aged or older, we need to find a way of encouraging and engaging
       younger people to take on the role, having them sit down with older carers, and taking the
       message into schools … they need to be taught it’s more than just bathing people, it’s
       helping our community.”
       “Many of our people are hidden carers, because we don’t believe in labels and we look
       after our own. Some of us realise we need to ask for help, but many don’t, even we don’t
       know who many of them are.

Carers from other culturally diverse backgrounds:

Ways of supporting carers from other culturally and linguistically diverse backgrounds
also need to be taken into account, in particular, the cross-cultural training of non-CALD
staff, and where possible drawing staff and helpers from their own communities.

       “Many of our people who migrated to work in the Snowy Scheme or in Canberra are
       now retired and still living here, but most of their children have moved elsewhere as
       opportunities arose and because there haven’t always been plenty of good jobs here. So
       now they are all starting to need a lot more assistance but most have no family to fall
       back on here. So we are trying to get special help from the government, but so far nothing
       has happened.”

       “With all the embassies here, many of the support staff have chosen to stay in Australia,
       and some play a valuable role in assisting older members of their communities with access
       to services. But there seem to be a few nationalities that don’t do things this way. We’ve
       been able to find suitable contacts who speak some of their languages, but not all.

Hidden carers:

There is a need more effectively to target hidden carers.

One of the complexities of providing timely, accessible and responsive appropriate
support, is that many carers do not identify as being a carer. This is attributed to a
complex range of social and cultural values, beliefs and attitudes that result in a lack of
self identification; and a general lack of awareness in the community of carers needs by
professionals.

When communicating with hidden carers (and future carers) there is a need to
communicate with them and provide information to them in terminology that they
recognise and with which they can identify (ie, other than ‘carer’).
       “I guess I am a carer when you put it like that, but I took on the job of looking after her
       because I’m her husband – I never thought of myself as a carer until you challenged me
       just now.”

       “They hold these weekly meetings at the nursing home for carers, but I always thought
       they were for the paid staff until one day one of the other families asked me if I’d go with
       them. Those meetings have been very helpful for me, but I still don’t think of myself as a
       carer, it’s the wrong word to use when you are family.”

       “I think it’s wrong to call us carers because we certainly are not. We care, and we
       provide as much help and assistance as we possibly can, but we do it because we are
       family and friends – that’s what families and friends do, and that’s what I want to be
       called. I’m happy as a family member to accept all the assistance that’s on offer to help
       me do that properly, but please don’t call me a carer again, I hate that label, its
       demeaning.”

Many carers do readily identify with the term ‘carer’. Research by ourselves and others
suggests that this group comprises about one-third of all carers.

       “Of course I’m her carer, I became a carer as soon as I took on the task of looking after
       her to a point where I had to radically change my life to be there to look after her.”

Many other carers see themselves first as parents, partners, children or other relative or
friends of the person being cared for, but with the right language, these people can also
potentially be reached easily (eg, asking them whether they care for or look after someone
with a disability, etc, without {initially} mentioning the word carer). Our research
suggests that this group main comprise a further one-third or so of carers.

       “I’m his father, not his carer, but I could use some of the help you say is available to
       carers – from what you say, I’m probably eligible, too, but I’m not a carer.”

However, there is a third group of people who could be regarded as falling within the
definition of ‘carer’, who either reject the term ‘carer’ altogether as inappropriate to their
situation, and/or reject it as demeaning in describing it. This group is far more difficult
to reach as it rejects not only the term, but also the implications behind it (eg, that people
looking after someone with greater needs than the ‘average’ person should be treated any
differently from the rest of the community). This group may also comprise around one-
third or so of carers (as defined above).

       “It was bad enough having to deal with the fact that you had to watch helplessly as a
       once healthy teenager wasted and died in your arms from an incurable disease. What
       nearly killed me was when the nurse asked the minister in my presence to say a prayer for
       her carer as well. It took some time before I realised that I was no longer thought of as
       her mother, but as her carer … and now she was dead. I’ve forgiven that nurse long ago,
       but not a system that labels you as something less than a parent! I was never her carer –
       but I did care for her, and I was and always will be her mother!”

       “What concerns me is that when you label people as carers and set up a carers policy,
       they’ll have to get whatever is provided under that policy, in other words, they’ll be judged
       and treated differently from people who aren’t labelled and so become ineligible by default
       from the normal services and facilities that any family can access at the moment, and
       which in many cases will be more than adequate for their needs.”

       “I’ve already had experiences where I’ve been in one queue at Centrelink and when I’ve
       enquired I’ve been told because I’m a carer of someone with a disability, I have to go over
       and ask at a different queue where they wanted to fill out a long form that was going to
       lead nowhere. So I went to a different Centrelink office and didn’t let on about my
       situation caring looking after my daughter, and of course I got what I’d wanted in the
       first place.”

       “I could accept a policy that promoted the idea of caring within the community, of
       everybody helping everybody else, and it can talk about supporting families which will
       include all the people you are talking about. But please change the name to a ‘Caring’
       policy and leave all mention of the term ‘carer’ out of it … no, it’s not about finding a
       better word than ‘carers’, it’s about getting rid of the whole idea of thinking that you have
       to invent a label for anybody.”
Services need to be aware of, and distinguish between, these three different types of
carers, in order to serve all carers effectively.

       “Every service seems to speak in a different language depending on which illness or
       disability or affliction they cater for, so while a lot of the messages for carers are common
       to all carers, there will still need to be specialist messages for carers of different types of
       people requiring care. But on top of that, you almost need to speak appropriately to three
       different types of carers, the extremes of which are almost mutually exclusive. ”


PRINCIPLE 4 . The carer and the person being cared for should be regarded as a
partnership or single unit, with the same rights and dignity afforded to both. This
partnership needs to be recognised and respected, and carer participation should
be facilitated in all decision-making related to the care situation, while balancing
the consumer’s rights to privacy and the carer’s need to know.

Support needs to benefit both the carer and person being cared for. Support needs to
strengthen the participation and inclusion of people with disabilities and other conditions,
provide opportunities to develop friendships, undertake paid work or training and engage
in social and recreational activities.

Carers need access to a wide range of information, assistance and resources, in language
they understand and can act upon, in order to help them effectively carry out their caring
roles, particularly at the onset of disability or illness. The provision of information needs
to be an ongoing process covering all aspects relevant to caring and tailored to the needs
of carers and consumers at a particular point in time, and widely available where and
when they need it – professionals and service organisations need to share the
responsibility of helping to make this happen.

Many carers report feeling left out or actively ignored by some professionals and service
providers when they are dealing with the person receiving care, or at best told about the
situation after the event. This is particularly so with young carers, although it is reported
by most types of carers to some extent. Others say that some professionals and service
providers have recommended treatments or activities for the person being cared for
without reference to their ability or willingness to support them.

       It is often just presumed that we will do whatever the doctor or physio or whoever thinks
       is best for the person being cared for. In some instances I have had to argue strongly
       against it, sometimes because I believe what they are suggesting is not right for (my son)
       and sometimes because we simply cannot afford it. I feel I have a right to be consulted
       first about things like this, or at least that it be discussed with both of us at the same
       time so that I have the opportunity to act to avoid disappointing (my son).”

However, obtaining this information is difficult and possibly inappropriate when the
person being cared for may not want the carer involved.

       “There are times when you fall out with each other, and because you are both adults it’s
       not a case of ‘mother knows best’ anymore. There have been times when I’ve had to seek
       the neighbours’ help in subduing him, but they aren’t happy about it because he then
       threatens them. He won’t listen to reason from me anymore, but I don’t know where to
       go to find somebody who can reason with him.”

Participants noted that perceptions of what is important, differs between carers, care
recipients and the organisation. It was considered that providers need to recognise the
legitimate views of carers. It is important that services don’t impose a way forward, but
that they work with carers to achieve understanding and agreement.

Under the Privacy Act, personal information must not be disclosed without consent from
the person concerned. A committee has been established to review the access of carers to
records under the ACT Health Records Act. One option being considered is to define
carers as part of the treatment team.

ACT Mental Health Services are piloting the use of advanced agreements in conjunction
with consumers, carers and clinical staff. An advanced agreement is a non legally binding
statement outlining what the consumer agrees to as best practice treatment and care for
themselves if or when they become mentally unwell.
In a number of instances, a range of carers indicated that this system is working well, and
several people being cared for who have signed such an agreement (and in one case where
the person had written and signed their own letter to be used for that purpose)
maintained that they were happy with the idea. Some others generally agreed with the
idea of an agreement that allowed access to relevant (eg, need to know) information but
were concerned about how this might be abused unless the definition was very clear, and
a few opposed the idea of making confidential information available at all in this way.

       “I have no problems with it – I’ve got nothing to hide, and when I am (having an
       episode) I’d prefer mum and dad to be privy to everything they need to know, for my well-
       being.”

       “Something has to be done to make it easier for carers to access to (confidential)
       information they need to know, but who is going to decide where to stop, I agree with the
       idea of some sort of legally binding agreement in principle, but I’m yet to be convinced
       that doctors and psychiatrists are capable of correctly making what is really a legal
       decision.”

       BUT

       “I really worry about this one. What if the person doesn’t want his parents to know
       something very personal that has nothing to do with his treatment, but is on his file, like
       having contracted as STD or something when his parents are totally against him having
       sex. Or if a girl confides that she’s a lesbian and her parents would disown her if they
       found out. These are both cases I’ve had to deal with where confidentiality has been
       breached totally inappropriately, and both were disastrous psychologically for both the
       person being cared for and the family. How much more often will it happen if they are
       legally allowed to see the files?”

It was suggested that the ACT Government work with agencies, carers and care recipients
develop clear good practice guidelines around the provision and sharing of information.
PRINCIPLE 5: There is a need for organisational cultures to be welcoming of carer
participation. There is a need to enhance communication between professionals,
service providers, and carers, and the encouragement of a collaborative and team-
based approach.

In many cases, nobody outside the caring relationship knows or understands (what is
going on with) the person being cared for better than their carer.

This expertise and skill of the carer needs to be recognised and respected by professionals
and service providers, and acted upon in partnership with the carer and the person being
cared for.

       “I ask the experts for a progress report on how he is going and they all say ‘fine’, but the
       person they see is the nice little boy I bring in, not the uncontrollable episode he had last
       night, and you know what, they don’t believe me at all, or tell me it’s just an isolated
       event, and one even told me I should wake up to myself and not exaggerate. I know
       what’s going on with him, why won’t anybody listen to me?”

This is not an easy task. Enhancing consumer and carer participation can challenge the
power and authority which staff derive from professional knowledge and skills, requiring
a change in relationship between staff and carers, from a compliance approach to one of
empowerment and partnership. Carers should have and be allowed or encouraged to
have active involvement in decisions about the care of people they care for, in their
assessment, and in care and treatment planning, implementation and review.

       “I guess it depends on the skills of the carer to negotiate, but I never seem to have any
       trouble making sure that I know what’s going on and that they will consult me when
       necessary. But I’ve also seen some carers who are timid and don’t want to cause a fuss
       being left out of the loop.”

Carers should be able to provide input into service delivery, quality assurance and policy
and planning, recognising the interdependence of informal carers and paid care workers
as complements of, rather than substitutes for, each other.
       “It should be a seamless process, where we hand over to them and they hand back to us,
       with no difference in the quality of service, and with both working to provide what is best
       for the person being cared for.”

For professionals and service staff, there is a need for regular professional and staff
development on carer issues, with carers being involved in the training.

Formal protocols also need to be developed that delineate the rights, roles and
responsibilities of carers and staff, and expansion of structured opportunities for
communication such as regular carer-staff forums to facilitate networking and mutual
understanding.


PRINCIPLE 6: Support resources that can play a significant role in reducing the
negative impacts of care-giving and maximising its effectiveness, need to be
expanded. Future planning should take account of the intensity of care provided
and the key transition points in the caring relationship.

The consultations confirm that the caring role can be physically, mentally, emotionally
and economically demanding, and support to address these issues is needed by many
carers. Carers experience frequent sleep interruptions, and social effects such as losing
touch with friends and strain on family relationships. Carers need to undertake many
tasks such as heavy lifting, meal preparation, toileting and personal hygiene, household
management, and so on, that many are ill-trained and ill-prepared to take on. In many
cases, caring is a ‘24/7’ involvement with little or no respite (taken, even if available).

       “Juggling work, study and care are hard enough, but when you also want to change the
       world, it’s almost impossible to find enough time.”

       “It’s an awful strain on the whole family, my husband, the younger brothers and sisters,
       and even the grandparents who try to help as well.”

       “You can always take a sickie from an ordinary job, but not when you’ve taken on the
       job of caring for someone, it’s a fulltime 24/7 job with little or no respite.”
       “It’s a continual fight to get the support you need, if it’s there at all.”

       “When you are working fulltime as a sole parent caring for a child with a disability, you
       have very high medical expenses and your sick leave and recreational leave disappear very
       quickly.”

       “Employed people get 104 days off with weekends, plus annual leave and public
       holidays, but I’m lucky to be able to get more than one or two days off each month – it’s
       totally unfair, respite is such a joke.”

Carers as individuals also have their own needs both inside and outside the caring
relationship.

This includes their health, social and economic well-being, as well as their participation in
family and community life, employment and education. Carers have the same rights as
other citizens to participate in the economic, social and cultural activities of the
community.

However, carers experience lower levels of labour force participation and income than
the general population. Young carers often miss school because of their caring
responsibilities.

Carers (as with the people they carer for) are entitled to the right to live as normal a life as
possible, and to have the same rights, choices and opportunities as the rest of the
community. It is recognised that carers may need emotional and practical support to
achieve those rights.

       “We were determined not to let it change our lives completely and I think to a large
       extent we have been successful in doing that. However, when I look back I don’t think it
       would have been possible if we hadn’t reached out to our neighbours and friends and
       asked for some help.”

Community and mainstream services need to be aware and responsive to the specific
educational, employment, health and social needs of carers and former carers in
supporting them back into living and working situations if they wish:
       “All too often, carers are forgotten about once they are no longer caring for someone. But
       especially if their caring role has been intensive and over a long period, and that’s
       probably the bulk of carers, we know from experience that they need a lot of help and
       support in returning to some kind of normal life. Often this support comes form their
       families and friends, but it’s symptomatic that many carers no longer have any family or
       friends to speak of, and these are the people we need to be careful not to let fall between
       the cracks.”

Carer experiences of providing care and their subsequent needs for assistance, is affected
by the context in which caring occurs, including their levels of education, skills and life
experiences, their self-perceived strengths and limitations, and the extent to which they
are involved in or isolated from the community. Service providers need to recognise
these contexts, and where possible provide greater flexibility and more options in the
solutions they offer.

       “Needs are often only expressed coherently by those who believe that a solution exists or
       might exist, not if they don’t believe this. For example if they have already resigned
       themselves to the mistaken belief that there is no future for them, then they are unlikely to
       express finding a future as a need … because(they assume that) there isn’t a future. So
       what they experience, who they talk to, who makes a point of talking to them, who they
       discuss things with, and what happens to them and what sort of spin they put on what
       happens to them, will all have an impact on where they are at, when we get to see them.
       Unless you sit down and listen and ask penetrating questions, you’ll never get to the heart
       of the matter with many carers, and so you’ll never really be able to help them.”

A key area here is the need to support the development of carer skills for the benefit of
the carer and the person receiving care. This subject was raised in many of the
consultation sessions, with both carers and service providers identifying various areas
where many carers could benefit from effective training and skills development.

As mentioned elsewhere, these areas include such things as: health care; administration of
medication; toileting personal care and hygiene, transport, mobility, lifting and carrying;
clerical assistance and paperwork; managing the finances, banking and bill-paying;
communication; housework; meal preparation; property mintenance; and personal care.

In many cases carers already have have skills and experience in these areas, but most
comment on at least one area where they are falling short or could improve their skills
further.

While a range of skills courses and training are offered by CIT, the need for other
specialised training (eg, on lifting and carrying; understanding medications; nutrition and
special meal preparation, and so on) is also suggested. A flexible range of options is
needed, with many carers being unable to attend courses during work times or outside the
home. Evenings, weekends and (school) holidays will suit some carers, whereas in-home
training visits are the preferred (or only) option for some more home-bound carers.

There is a need for a tiered definition of carers that ensures that all relevant carers are
covered, but which identifies priority of service to ensure more equitable access to
resources by carers in greatest need (see later explanation).

       “With such a huge number of carers, there is no way they can all be offered whatever help
       they might ask for – it would be nice if we could, but we can’t so some priorities have to
       be introduced.”

       “They have to prioritise anyway, so it might as well be based on a set of priorities we
       generally agree with rather than making ad hoc decisions on the run.”

There is a clear need for (further) education and training of professionals (medical
practitioners, mental health practitioners, pharmacists, et al) of the role, needs and rights
of the carer, and their role to observe, and where appropriate take steps to assist with or
refer to other professionals or support services, the physical, emotional and mental health
and well-being of the carer accompanying the patient, as well as the patient’s.

       “They’re just in it for the money and pushing people through fast, so they hardly have
       time for the patient – they certainly don’t have time for the carer, even if she’s stressed out
       of her mind. I don’t know how I’m going to make it through the day, sometimes, and it
       would be nice at least to have them acknowledge this, and maybe give me a bit of help,
       too?”

       “When I take (my daughter) to the doctor is about the only time I get to see him, too, but
       he doesn’t take me seriously because he thinks it’s just (my daughter) who needs to see
       him. How can you break through that barrier and get taken seriously?”

       “Sometimes I wonder if she even sees me, whether she thinks I’m human, she scarcely
       acknowledged that I’m in the room.”


PRINCIPLE 7: The impacts of the Carers Policy on carers and people receiving
care should be evaluated over time.

It is important that new interventions are designed and evaluated based on notions of
need, outcomes and effectiveness defined by carers and people who receive care.

New interventions, programs and procedures aimed at supporting carers need to be
piloted to establish initially what works best, and their implementation submitted to
robust evaluation to establish best practice over time.

As in many health-related areas currently, there is a strong call for evidence-based
evaluations.

       “It used to be that you evaluated whether things were working or not based on the quality
       and efficiency of the services being offered rather than the effectiveness of the outcomes
       achieved.”

       “Even if it’s only anecdotal, the proof that a lot of smaller services are working is in the
       number of success stories they can tell, provided that they can document them for you. We
       need to devote far more attention to supporting and enhancing services that are already
       working, rather than trying to confuse the issue by introducing new services that
       supposedly complement but often only supplement or compete with them.”
PRINCIPLE 8: The role of the carer and former carer (and other community
minded citizens) in providing support and help to other carers needs to be more
effectively recognised and utilised.

It would seem from our consultations that many carers and support organisations believe
that nobody knows the concerns, needs, desires, fears and hopes of a carer better than
another carer.

Clearly many carers and former carers may not be interested or equipped to undertake
this role, and no one carer is likely to be suitable for all situations. However, the diversity
of these former and other carers matches the diversity of current carers.

Hence the synergies likely to be gained by matching a relevant carers or former carers
with newer carers (a buddy system) or with a number of carers (support groups), gaining
the assistance of other carers and especially former carers to seek out and assist hidden
carers and carers in difficulty or crisis (an early intervention system), and engaging and
appropriately remunerating carers and former carers to train and guide new carers (a
mentor or coach system), should be examined carefully. Some of these arrangements are
happening on a small scale already , and their effectiveness should be evaluated. Other
approaches might become the subject of carefully devised pilot schemes, to identify
which approaches work best and to investigate areas for improvement.

Some of the skills which it is felt many former carers have the skills and experience to
pass on to others include: general cleaning and housekeeping skills; techniques of lifting
and using lifting equipment; household budgeting skills; efficient time and resource
allocation; nursing, toileting, medicating and personal needs skills; and so on. In other
cases, it may simply be using the skills of listening and ‘being there’ for the carer.

       “Sometimes all that’s needed, and in fact all they can cope with at the time, is a shoulder
       to cry on and an ear to listen. I know from experience that other carers can do that the
       best because they know a lot of what you’re going through because they’ve been there
       themselves. Since my husband passed away, I’ve been doing a lot of that – it was good
       therapy for me, too.”
There is also a need for a range of flexible options in this regard, to suit the quite diverse
needs evident across the carer population. Whereas some carers have the time, energy,
funds and social skills to go to meetings or group sessions, others lack one or several of
these pre-requisites, and some simply do not want to be involved for various reasons,
including, in many cases simply not wanting to identify with the term carer or with others
who do.

The expertise and skill of the carer need to be recognised and respected more widely
within the formal care system, and again acted upon in partnership with the carer and the
person being cared for. As was emphasised by many participants in the consultations,
while many carers go on to act for others (eg, friends, other relatives, neighbours) in an
‘informal’ caring capacity after completion of their (initial) caring role, some ‘informal’
carers do move on to join the formal care system, including helping to set up and run
service provider organisations, and acting as advocates for people being cared for and also
(sometimes) their carers. Many former carers either already have the skills and experience
to provide assessment, sourcing of information and advice and providing advocacy for
carers and the people they care for, or could undergo some training to acquire the skills
and experience necessary to undertake these roles, either as part of or in conjunction with
the formal care system.


PRINCIPLE 9: The right not to care should be fundamental. Carers have the right
to decide whether they can take on or continue the role of a carer.

Some carers may feel pressured to undertake inappropriate or excessive levels of caring
tasks, beyond their economic, physical or psychological capacity or desire to provide care.

Agencies supporting carers are aware of several instances where carers continue to care
beyond their capacity because of a lack of support and services, which has led to
detrimental effects on the health and wellbeing of the carer and person being cared for.

       “All the doctor said was that she may have suffered some brain damage during birth.
       Nobody else said anything about it, and when I took her home from the hospital she
       seemed to be fine. She was my first child and as a single mother I kept to myself a lot, so
       I didn’t compare her with other babies. But when she started school, it became obvious
       that she was much slower than other children and one of the other mothers told me where
       I could take her to have tests done. That was the first time it has ever even occurred to
       me that anything was wrong and when the results came back I fell apart. It got so bad I
       was put in a hospital and she was taken away from me for several months. I don’t want
       to talk about it anymore, all I want to say is that I blame the hospital for not doing
       anything to inform me or assist me when she was born. I’ve been told many times that I
       should sue them, but I’ve already gone through enough mental torture and what would it
       achieve for my daughter now?”

It is acknowledged that the provision of timely, appropriate and direct assistance to the
person who is disabled, ill or aged may help to alleviate carers from inappropriate or
excessive caring roles.

Concern has also been raised that if carers are to have a right not to care expressed
specifically in a policy document, then it should also be stated somewhere that people
being cared for should also have a right to be cared for (or not), and probably also to
have a say (ie, the right to accept or reject) whom they will have as their carer.

       “The (issues paper) seems to be all the carer’s way. Maybe that’s because as you say
       other policies probably already look after the people being cared for in various ways. But
       unless you also at least refer to the rights of the person being cared for, the whole thing
       will fall in a heap for being self-serving.”

Various services providers and some carers also suggest that there is a need for
professionals and service providers to monitor the (relationship between the) carer and
the person receiving care, in order to provide or recommend early intervention to prevent
abuse. Elder abuse is often referred to here, but it can occur at any time in the caring
relationship (eg, if the carer is under extreme stress).

       “Every month or so there are several older people dumped at aged care facilities, and
       we’ve heard of someone ‘dumping’ a child with a disability at the Ministers office. …
       But what is equally worrying is the stories you hear about carers who abuse or neglect the
       person they are supposed to be caring for. Most carers are great people doing the best they
       can with the resources they’ve got, but occasionally someone goes over the edge, and a few
       are just lousy carers. It would be great if we could identify these people and do something
       about their situations before something serious happens.”


Several participants felt there should be a more systematic way of identifying and
assessing the capacity of the carer to commence or continue in the caring role. They felt
that wherever it is identified that a person requires care, professionals, organisations or
someone should identify who is the carer, and make appropriate enquiries of the carer,
the person being cared for, and/or the family to see if the carer is capable of providing
the care required and whether they should be referred to supportive services and
programs if appropriate.

There is a clear need for early intervention (at various stages in the caring process) to
prevent crisis. Comments by service providers and carers suggest however that in many
cases in the ACT, the system is not able to respond early enough, either because the
underlying issues were not picked up early enough, necessary services were not available
or in place when needed earlier, not even identified as needed, or waiting lists are long
(and sometimes closed) for existing services.

           “There’s no point looking for an aged care bed, I’ve rung them all and they have
           hundreds on their waiting lists, and most won’t even take your contact details.”

           “Respite is a joke – they could give us a couple of days in the middle of next month,
           but we needed it immediately.”

           “I could arrange day care until 3 o’clock, but who was going to look after him until
           I could pick him up after work. So I had to give up my job which will cause us
           considerable financial distress fairly soon if I can’t make alternative arrangements.”
2.3 What Sustains Carers?
Many of the ideas and initiatives that can sustain carers have already been outlined and
elaborated in other parts of the report. This section of the report highlights some of
them.

Many carers are operating in isolation with little or no outside help from anyone (neither
family, friend nor professional services) – often this is by circumstance (eg, no family left
or too far away; isolated location away from services), often by choice (eg, “It’s my/our
problem, leave us alone”; “don’t like/trust family, and no friends anymore”; “Only I
understand her”, etc) – and understanding and addressing the issues that arise from these
two different kinds of isolation is paramount in framing a carers policy that will sustain
carers.

Also, whereas in many caring relationships, the carer and the person being cared for
support each other as best they can, in many other relationships the person being cared
for is unable (eg, too ill or infirm or disabled) or unwilling (eg, resents their situation and
their carer’s presence) to support the carer much if at all. Such situations need to be
identified and appropriate support provided.

In some (perhaps many) cases, the person being cared for will put considerable pressure
on the carer to behave in certain ways (eg, not letting anyone know of their situation; not
seeking professional assistance; not organising respite care; etc), and many carers accede
to this, often severely disadvantaging themselves and the person being cared for as a
result. Again such situations need to be identified and appropriate counselling and
support provided.

Awareness, understanding and perceived ability to access a whole range of support
services needs to be looked at closely. While many services may be available in the ACT,
many carers do not know of them, nor where to look. Furthermore, many assume that
they are not eligible anyway. There is a need for a broad education campaign aimed at
carers and the community to overcome this, with appropriate information services put in
place or enhanced to support it.

Among the services that we have found carers exhibit most confusion and lack of
information are: respite care for the person being cared for, respite accommodation for
the carer; subsidised and/or specialised transport services; home care support of a nursing
kind; home help of a repair and maintenance kind (eg, lawn mowing, help with washing
and ironing, etc); counselling both for themselves and/or the person they care for;
support or discussion groups; social interaction groups; mediation or dispute resolution
services, etc.

While all these services exist to some extent in the ACT, there is a call for them to work
more within a holistic framework rather than in relative isolation. A carefully devised and
targeted education campaign would also seem warranted to address the considerable
disparity in awareness and understanding of these services across the carer population.

While some carers will inevitably resist outside help, it is clear than many would benefit
greatly from regular people contact outside of the caring context and environment, even
if it is sometimes contact with other carers in similar situations to themselves.

        “Regular get togethers with family and friends are essential for my sanity.”

        “Fortnightly meetings at the nursing home for carers have been very valuable, especially
        for exchanging information and advice.”

        “I’ve been helped so much by a neighbour up the street, not so much in a physical sense,
        more with her great advice and moral support – you see, she cared for her aged husband
        and a son with severe intellectual difficulties for twenty years, so she’s been through it all
        before.”

        “We organised a self-help group some years ago and it’s been a godsend. I don’t think
        there has been a problem we haven’t been able to solve among ourselves one way or
        another.”
Others require different forms of relief from their caring role, such as respite. Many
people maintain that if the appropriate services and support were in place where and
when they are needed, carers would be better sustained and the need for respite would be
reduced in many cases. This in turn would take some of the pressure off the respite
services in the ACT.

While some carers would like some respite away from the person being cared for (either
on their own or with the rest of the family), others would like respite with the person they
care for. Some people would prefer respite to be away from the home, others would
prefer it in the home. Some people can wait for a reasonable time to take respite, others
need it right away (often in an attempt to recover from crisis situations). Indigenous
participants expressed a strong desire to be able to employ people from the Indigenous
communities to provide respite care. In assessing the future direction of respite care, the
need for options and flexibility to accommodate these diverse needs should be examined.

There is a general lack of knowledge among carers and organisations supporting carers
about what is available, including both information and services for carers and the people
they care for. There is not thought to be a single entry point or one-stop shop for carers.

           “I’ve been carer for over twenty years, and I’ve helped lots of other carers in my time,
           but you feel like you’re starting from scratch every time, there’s no easy way to find
           things out.”

There is a need for a one-stop information approach for carers (and anyone else fulfilling
a caring role if they do not wish to be labelled as carers), possibly combining telephone
(eg, 1800- or 13- phone number), electronic (eg, internet) and face-to-face (eg, shopfront)
interfaces, designed to be able to provide an answer to all enquiries from carers, firstly by
providing information and assistance where it can, and secondly reliably referring people
to more specialist resources as appropriate. This service could be an extension of existing
service(s) or a stand-alone (See later reference to Carer Resource Centre).

           “It’s a battle every time you want to find out something new. You don’t even know
           where to start, sometimes.”
“There should be a hotline, especially for carers, that can point us in the right
direction.”
2.4 The Needs of Carers Across Key Transition Points in the Care-
    giving Lifespan
There is growing recognition that policy measures responsive to the diversity of caring
roles, and geared around key transitions, are likely to be most effective in supporting
carers through changing circumstances. The current consultations reinforce this view,
and also highlight the need to plan whole of life services around key transitions.


2.4.1 Some Key Transition Points
Expanding on the list provided in the discussion paper, some of the key transitions
identified in the consultations (in rough sequential order of events) are outlined in the
diagram on the following page:
 Identifying        Early warning of a future need for care (eg, rapid deterioration in mobility;
 the future          diagnosis of debilitating illness, etc)
 carer
                    At the onset of disability, illness or addiction – at birth or later in life (shock
                     and upheaval)

 Some               Time of diagnosis (which may occur well after onset)
 transition         Transitions to school or supported care (changing circumstances and patterns
 points              of care).
 during the         Moving from children’s to adult services – or into supported work (or in
 caring              limbo)
 period
                    Moving from school to work and independence (or in limbo)
                    On discharge from hospital or supported care facility (re-establishment of
                     home-based routine, and changing patterns of care)
                    Moving to other states, or overseas (involving lack of portability of benefits
                     and having to re-discover contacts and services)
                    Between service or system types - from children’s to adult services, or from
                     disability system to the aged care system (confusion about possible loss of
                     some benefits and confusion about the availability of services)
                    When a person leaves the workforce due to illness or accident (can be at any
                     time, often unexpected, massive upheaval in income and living situation)
                    As illness or disability progressively worsens or improves over the life course
                     (carer’s role and conditions change significantly)
                    Moving to independent living or institutional care (carer often continues in
                     changed role, sometimes more intense)
                    When the carer needs to give up the caring role (through illness, becoming
                     frail-aged, when caring is beyond their capacity, or on their death).
 Supporting         At the end of care (when the person being cared for dies or moves into
 the former          supported care or overcomes their illness/disability to the extent of no
 carer               longer needing a carer).·
                    Re-establishing the carer in community and work life




2.4.2 Identifying the Future Carer
Early warning of a future need for care (eg, rapid deterioration in mobility; diagnosis of
debilitating illness, etc) denotes a point at which it is appropriate for professionals and
others in contact with the family to communicate the likely course of events and prepare
them for their caring role.
       “I’m so glad the doctor made me aware that my husband would lose his mobility over the
       next few years, because it gave me time to learn to drive a car so I could drive him
       around. It took me some months even to pluck up the courage, and another couple of
       years to pass the test. If I’d waited until he became immobile, I don’t think I’d have
       been able to do it.”

       “Knowing well before (my husband’s) memory started wandering badly, meant that I
       could help him get all his affairs in order and teach me about his investments so that I
       was on top of everything. It wasn’t the doctor that started me thinking about it, it was
       the advice given to me by Alzheimer's Australia.”


2.4.3 During the Caring Period
Crucial here is the fact that many, perhaps most, carers think short-term, or at least do
not have a clear medium- to longer-term view – some see little future for themselves,
anyway (eg, “I’m stuck with this for life”).

Importantly, few have a clearly defined succession plan (eg, “Who will look after him/her
when I no longer can?”), nor a future vision for themselves (eg, “Will I find a life again
after he/she dies”)

       “What’s going to happen to him when I grow too old to look after him … and what’s
       going to happen to me?”

Many carers are therefore often not aware of changes that will take place in their lives
(even, sometimes when they are passing through a transition point – it will often only be
realised retrospectively).

The first transition point during the caring period is often marked by the onset of
disability, illness or addiction (birth or later in life). Especially when it is accompanied by
an accurate diagnosis, this is often a traumatic period (even for many of those with early
warning), with shock and disbelief being paramount emotions. Some carers go into
denial at this point, and this can last for some time.
        “You listen to the diagnosis but you don’t want to believe it. You think medical
        advances will provide a magic pill, or that maybe one day he’ll wake up and show some
        sign of improvement. It was many years for us before we realised that this is as good as it
        gets, and that we’d better get on with it.”

Importantly, awareness of the onset of a disability or illness does not necessarily coincide
with its correct diagnosis, or any diagnosis at all. Family members may find themselves
increasingly making allowances for the person with the developing condition (eg,
increasing forgetfulness; declining mobility), or having to assist them with various tasks,
before realising that something is not right, or before the doctor regards it as out of the
ordinary.

For some (particularly those with younger charges) transitions to school or supported care
is the start of the next key period of care. Again, for many this is a time of considerable
upheaval as household and family activities and regimes undergo massive change. While
information and assistance with options for the person being cared for are generally
reasonably available and clear-cut, the situation is far less so for the carer and other family
members.

        “What they are doing with (our daughter) is fantastic, she absolutely loves it, she’s
        happier than she’s been for years, and we couldn’t ask for a better solution from her point
        of view. The problem is that they are so helpful that we feel totally left out, almost a if
        we aren’t needed anymore, and we don’t know how to deal with it..”

Moving from children’s to adult services, or to a supported work situation (or to limbo) is
a particularly traumatic time for many carers and the people they care for, as the
information and assistance with options for either party are often perceived as unavailable
or not clear at all.

        “Not knowing whether he’d be able to get a job of any kind was a real worry for us, not
        because of the money, we are OK financially, but it’s his self-esteem. He’s done quite
        well at college all things considered and they even gave him a prize for most improved
        student, and he is very proud of that as we are. But I’ve made lots of enquiries and
       although everyone says they’d like to help, there are far more people wanting jobs than
       there are jobs available.”

       “For us, when she leaves school we already know there’s almost no prospect of work for
       someone like her, so we’ll have her around the house all day. She’s not a happy child at
       the best of times, and she’s very demanding, so I don’t know whether I’ll be able to cope if
       she’s at home all the time. I’ve tried to seek advice on this, but people have been rude to
       me, telling me not to complain – but I’m not complaining, I’m making an increasingly
       desperate cry for help. And to cap it off, my husband has threatened to leave if I don’t
       get it sorted out soon.”

Particularly if the diagnosis was unexpected, or the period in hospital or a supported care
facility was lengthy, carers and care receivers see the post-discharge transition from facility
to home to be a period of major adjustment and often associated with much uncertainty
about how they will cope.

       “At the time, I thought what will I be able to do, whose help can I call up, will my skills
       still be needed, can I still relate to normal people, and so on. Luckily a good friend gave
       me a part-time job straight away so that I could get back on my feet, and I did several
       courses at CIT to update my skills and to mix with other people again. I was lucky, I
       was able to do all that. That was over ten years ago now, and today I spend a lot of time
       helping others who are in the same position as I was then. They are given my name by
       organisations who know about me. But there’s only one of me, and there doesn’t seem to
       be any organisation in Canberra that does what I do, that is looking after carers once
       their caring role is over.”

The end of care can come about for quite different reasons, and therefore give rise to a
wide range of quite different emotions and responses. For example, the person being
cared for may die or move permanently into supported care; or they may overcome their
illness/disability to the extent of no longer needing a carer; or the carer may be required
to give up the caring role as a result of illness or ‘burn-out’ (or death). In many cases, this
will also be a period of grieving. Services need to take account of, and respond
appropriately to, these quite different situations.
       “In my case, when Jim moved into the nursing home, my role as a carer changed
       dramatically but increased rather than ceased. While he’d been at home I had managed
       his medications well, making sure he took them on time, and also guarding them so in
       his forgetfulness he wouldn’t take them again. I still have to do that because the staff at
       the home have got it wrong many times, and he nearly died from overdosing at least once,
       so I’ve insisted on taking that over. Plus they never wash the clothes properly, or give him
       back the wrong ones, so I have to do that, too.”

At mentioned elsewhere, the end of care in the home and consequent transfer of the
person to a supported care facility often does not mean the end of care, in fact sometimes
the caring role intensifies.


2.4.4 Supporting the Former Carer
At an appropriate time after the end of caring, all carers can be assumed to need some
degree of assistance with adjusting to the rest of their lives. Appropriate information,
services, support and assistance need to be in place for their well-being.

       “I felt totally lost when my husband eventually passed away, I’d spent so many yeas
       devoted to his well-being that I’d put my life totally on hold. So to occupy my time I
       started helping visiting old people in the home down the street, and that was more or less
       my whole life for another five years or so – I felt I was in limbo and I was still grieving.
       One day, one of the staff there told me about Carers ACT, and they have been a great
       help in recent years, but there should be some way of reaching carers to help them get back
       on track earlier. I thought even if the funeral directors had pointed me in the right
       direction it may have been too early to act right then, but at least I would have had the
       information and knowledge that there was somebody to turn to for help later.”

On the other hand, this period also offers an opportunity for harnessing the talents, skills
and experience of former carers to assist others (with remuneration as appropriate), a role
which many former carers say they would willingly pursue with the appropriate support.
        “I’m just about at that stage myself, and I’ve already started to find other people in the
        area who need a helping hand. It’s amazing how many there are out there when you
        start looking! Perhaps someone should set up a register.”

2.5 Access Barriers to Existing Carer and Mainstream Information
    and Support Services, and Some Suggested Solutions.
The discussion lists a number of barriers identified in other reports that appear to affect
the utilisation of support services by carers. These barriers are described and discussed
below in the context of the current consultations.


2.5.1 Lack of Awareness of Information and Services
Many support or mainstream services do not seem to be aware of the existence of carers
and lack the knowledge and expertise to identify carers, assess or respond to their needs.
Many services consider support for the person with a disability but do not consider the
support needs of the carer. The active referral of carers to support services is seen as a
gap in many existing services.

        “I’m not sure whether they are just unaware of our needs or whether they think we are
        just like normal families who can cope. But when I have a husband who because of an
        accident can’t earn a lot and we’ve got three other young children to contend with, having
        a child with a disability as well hardly makes us a normal family.”

Some smaller organisations have been set up by very resourceful carers seeking to fill a
gap in services for the people they care for. However, they tend to overlook the fact that
many carers are less resourceful than they are, and ignore or are unaware of carers’ needs
as a result.

There is a perceived lack of policies, useful tools and models of service that could aid the
early identification of carers, assessment and monitoring of their ongoing needs.

While sometimes recognising the role of carers, supporting organisations often do not see
it as their role, or see it as only a secondary role (eg, if there is time, resources, etc), to
support them, rather than to afford them a similar/complementary priority to the person
being cared for in the first instance.

             “Our job is to look after the person with a disability and in doing so you obviously to
             what you can to help their families as well, but as families supporting them, not as
             carers. We really don’t like to think of them as different to other families – once
             people do that, they slot them into a different category and then you run the risk of
             them being denied the assistance other families receive, because you’ve labelled them as
             different.”

One suggestion offered by many carers and service organisations is the need for more
integrated options to assist different categories of carers in terms of their respective needs
for advocacy, brokerage of services, case management, coaching and mentoring, and for
some, ‘leading by the hand’. While various individuals and organisations are referred to as
filling specific niches, the need is identified for some form of one-stop entry point
through which the different needs of carers can be identified and they can be referred to
the appropriate service for them.

At a different level, appropriate training and information about the identification and
needs of carers needs to be developed and expanded for a whole range of professionals in
undergraduate courses (eg, doctors, psychiatrists, pharmacists, psychologists, health
workers, social workers, and so on), and also included in professional development
modules for current professionals.

The ways in which some organisations (eg, MS Society and Alzheimers Australia) include
carers in the equation should be examined as possible models for other organisations to
adopt.

         “They took us through the various stages of dementia, not only to show us the signs we
         needed to look for and what they would mean to the patient, but also so that we would be
         prepared psychologically to cope with the changes, and when we should ask for help.”
        As MS progresses, the role of the carers increase dramatically – unless we prepare them
        for it, it can come as a great shock, plus by us including carers as partners in the process,
        we can assist them more effectively.”


2.5.2 Lack of (or Limited) Service Availability
A number of reports highlight that some service models lack the flexibility to meet
individual carer preferences and needs, which can result in inappropriate service delivery
(eg. respite provided at times that do not suit the carers).

        “What we needed was help much earlier, but no-one could help us until the diagnosis
        became serious enough, and it was too late to be of any real benefit then.”

        “They seem to running the services around their own and their staff’s needs, rather than
        the (needs of) the people they’re catering for.”

        “They are totally focussed on the needs of the person being cared for, and so am I. But it
        would be wonderful if they could consider my needs just occasionally, like sometimes I’d
        like to have an extra hour or two to myself in the afternoons, but their 3pm pick-up is
        pretty inflexible. They seem to have a one size fits all approach.”

Clearly, although many carers can fit in with existing services easily, many others find it
far more difficult or impossible to do so – many would benefit from greater flexibility and
options regarding their needs for services. Some service providers have reported success
in modifying their approaches in response to carer requests, once the need for flexibility
was recognised. However, others contend that where they cannot meet the needs of
carers and the people they care for, it is the people they care for who will receive the
priority.

Some carers and service providers have suggested that an appropriate education campaign
needs to be mounted among service providers and other relevant organisations and
professionals, highlighting the partnership between the person being cared for and the
carer, and that the desires and needs of both parties need to be taken into account. The
need for flexibility and a range of options is also noted.
Most carers do not have a succession policy, either for the person they care for, or for
themselves, and this is a cause of considerable concern and fear for many. In other
words, many have no idea what will happen to the person they care for if they (the carer)
die or become incapacitated in some way themselves, nor (also) what they will do (or the
options available) if or when their caring role comes to an end.

       “This is a very common thing and there are often no easy answers in terms of what will
       happen to the person being cared for, especially when some services such as aged care
       facilities and supported accommodation facilities are in perennial crisis. Many people
       haven’t even thought it through because they find it too upsetting to do so, but many
       others have attempted to think it through and they are still very upset and worried
       because they feel there are no answers. And the longer I stay in this industry, the more
       I’m convinced that maybe they are right. We can provide all the counselling in the world,
       but unless someone, and I guess it has to fall to government, can provide concrete services
       to meet the need, the crisis will continue.”

       “What we’ve found is that once you sit people down and listen to their issues and help
       them to talk through their fears, they leave feeling very much relieved and even
       reinvigorated even if we haven’t been able to resolve the underlying problem.”


2.5.3 Eligibility Barriers
Service entry can depend on the carer or carer recipient meeting certain age requirements
or a specific diagnosis. Many people (and particularly those with a dual or multiple
diagnosis) seem often to ‘fall through the cracks’ as a result.

Means-testing (either officially or otherwise) can also create barriers or priority decisions
either because the person earns too much or too little.

In particular, younger carers report that there are various anomalies in the system that
impact on them between the ages of about 16 to 18 years, when they reach a point where
they are no longer entitled to various support mechanisms, but that there are not other
mechanisms in place (or easily discovered or accessible) to take their place, or to assist
these young people to get on with their lives.
Carers are only eligible for the Carer Allowance if they live in the same house as the
person being cared for, which does not suit situations where the carer and person being
cared for have chosen not to live under the same roof (eg not related; encouraging
independent living, do not get along if too close, etc) although the level of care and the
restrictions it places on the carer may be no different if they lived in the same house.

It has also been claimed by many older carers that when they reach retirement age as a
person with a disability (ie, receiving a pension or allowance because of this) they are
suddenly viewed differently as an aged person (ie, moved to the aged pension) and
therefore seem to lose the status and some of the entitlements received by a person with a
disability.

There is also much confusion and misinformation out there about who is and who is not
eligible for various benefits, allowances and other payments. A number of carers,
particularly many of the hidden carers, reported being unaware that they might be entitled
to the Carer Allowance or Payment until they attended these consultations, and others
expressed concern that when they had found out that they were eligible, payment was
only made from the time of application, not from the time (often many years before) that
they became eligible.

        “That stinks. If we are eligible, we should be paid from the moment we become eligible,
        provided we can prove it, and I did have all the records – it’s not our fault if we don’t
        know what we are entitled to, and we shouldn’t be penalised for not knowing.”

Even the fact that the payments carry the term ‘carer’ (ie, Carer Allowance or Payment) is
perceived as rendering some people ineligible, particularly those who refuse to
acknowledge the term for their own reasons.

        “I don’t call myself a carer, but we’ve just about run through our savings, so if I have to
        call myself by that name, I will if it means I can get some financial support because we
        are getting desperate, but I hate the whole idea of being called a carer.”
2.5.4 Feedback Barriers
Carers report perceived difficulties in providing feedback or lodging complaints on
service quality, for fear that this will limit their access to care or present repercussions for
the consumer.

       “I can relate to that, Canberra is a small town, and if one organisation knows, you can
       bet the word will spread fast. I know we’ve been blacklisted in various places because of
       my son’s behaviour, and I get the feeling several places already knew before we got there.”

       “I kicked up a real stink about the poor treatment we were getting in Brisbane and the
       lack of trained staff, and it got to the stage where had to leave town, that’s why we are in
       Canberra, and it’s a lot better down here – I’ve had a few concerns but largely people
       have listened.”

       “Mum made me paranoid about letting anyone in the house, in case they found out the
       situation – I had been caring for her since I was about eight or nine as her physical and
       mental condition got worse and we had no money so you can imagine what the place
       looked like. There were times when I wanted to tell someone, but I was too scared to in
       case they took me away from my mum.”

       “Several years ago I reported what was going on in the group home my son was in. He
       liked it there, but the turnover of staff, and the often untrained staff that turned up at
       times meant that they often didn’t get fed on time or with the right diet (and he loves his
       food). I then found out that the other people in the home were treating (my son) badly
       because they had been told I complained. I had to take him out because of that, and I
       don’t know where he can go now, I wish I’d never spoken up in the first place.”


2.5.5 Equity Barriers
Groups of carers report inequitable access to services with the perception that their needs
are overwhelmed by needs from other carer groups. One possible reason reported for
this is the lack of consistent mechanisms to ensure equitable service access.
       “It’s not those who are most in need that get the help, It’s those who are most vocal or
       who know the right people, so it ends up being the better educated and the privileged who
       get the best service, and often where things are scarce those most in need actually are the
       ones who miss out.”

       “It was because I knew how to do it that when Andrew died I set up a service to help
       others less fortunate. I’m too old to do it anymore myself, but the group I started has
       gone on to help hundreds of people. But what about all the hidden carers we don’t even
       know about, I presume a lot of them find it really difficult to get anywhere. I hope this
       consultation process doesn’t leave them out completely, because it will be important to
       know what they feel if any of them come forward.”

Others report the insufficient targeting of carers needs during process of establishing
funding agreements between government agencies and local service providers.

       “We don’t survive without government funding and all funding comes with strings
       attached. In the end our first priority is to the client themselves, and we are constantly
       battling even to get sufficient funding for that. It’s not our place or in our charter to ask
       for extra funds to assist carers as well – you need to convince the government that it
       should offer this as part of its funding package.”

Many carers report experiencing difficulty in accessing services because they cannot
afford to do so, especially where services are located some distance away and where they
can no longer afford to own a car.

       “It’s easy for the rich, they can buy their way into a nursing home, but if you’ve used up
       all your money caring for the person you don’t have the money left to pay for a bed, so a
       nursing home is out of the question at this stage, and the hospital won’t take her because
       she’s old, not sick, so we are left with her and we can’t really cope anymore.”

How resources are allocated is questioned by many carers and service providers. There
are calls for greater transparency in the processes, and more assistance with how and
where to apply.
       “Like everything else, it seems to be those who yell the loudest who get the benefits of
       what’s there, rather than those who deserve it most.”

       “When you put in an application, you get the feeling that they have already decided who
       is going to receive funding – those in the know keep the information to themselves, so we
       have a real battle each time.”

It was the view of some participants that many non-government services were not as
forthcoming with information about themselves or as transparent or accountable as
government services had become.

           “It is very difficult to find out what services are really available, and how long
           waiting lists really are. And some are really secretive about what funding or
           packages they really have access to.”

Many of the issues of equity and eligibility raised in the consultations have to do with
concern sand confusion about the implications of Territory versus Commonwealth
funding in terms of support and services for carers and people being cared for, and
therefore the impact this has on carers (whose primary need tends to be that the needs of
the person they care for are being met).

There are calls for the Territory Government to reassess its funding priorities to allocate
more funding to services and support for carers and the people they care for. However,
people do recognise that much funding in his regard comes from the Commonwealth
Government. There is therefore also considerable support among carers, the people they
care for and service providers, for the Territory Government to advocate for more
funding in general for these people and organisations from the Commonwealth
Government, and particularly in the context of a Carers Policy, for more funding and
support for carers themselves. We understand that the Commonwealth Government will
shortly be announcing a major initiative of its own to assist carers.
2.5.6 Information Barriers
Several reports referred to in the discussion paper consistently note the difficulties carers
experience in getting essential and timely information about their caring role, particularly
at the onset of disability, illness or addiction.

It is recognised that carers experience difficulties in absorbing information at onset of
disability, illness or addiction, particularly when in a state of shock.

Reports emphasise the fragmented availability of information and subsequent lack of clear
entry points. This has been attributed to fragmented sector planning, and the lack of a
framework for cooperation for achieving consistency in carer and information
development.

A need had been defined by many carers and service organisations for a ‘one-stop’
information shop, preferably a central telephone number or an organisation set up
specifically to fulfil that role. From a Territory perspective, the ACT Shopfronts,
Canberra Connect and HealthFirst already provide information on and access to the full
range of government services and some other information and services. If appropriate,
the role of these services in assembling and providing information for carers could be
enhanced.

       “I don’t know how many times I’ve desperately needed help, but didn’t know where to
       turn. There’s a whole section on services in the telephone book, but it’s hard to find what
       you are looking for when you aren’t flustered – when you are, it’s impossible to even try.
       What is needed is a fridge magnet with one phone number on it that you can refer to any
       time you need help, knowing that they’ll have an answer, or be able to refer you to
       someone who has the answer.”

Several service organisations and some carers mentioned the Carers Resource Centre as
having been set up for this purpose, and some reported positive experiences, However,
given that awareness of its role seems to be relatively low, its existence needs to be
communicated more widely and effectively to carers and any organisations who reach
them, and it will need to be appropriately resourced and funded to meet the resultant
demand.

       “Eventually someone put me onto the Carers Resource Centre, and they were very
       helpful. The thing is, its an obvious name once you know about it, but few people seem
       to be aware of it, at least that’s been my experience when trying to get information.”

       “Someone mentioned the Carers Resource Centre just now. I did ring them once, but the
       lady there said she couldn’t help as the usual person was away. I then rang Carers
       ACT to find out what they could do, and got the same lady.”

Consideration needs to be given to supporting numerous small services to reduce
fragmentation of service and information, and to clarify and rationalise the situation
regarding occupational health and safety, public liability and professional indemnity
obligations, and staff screening procedures. This could be by way of providing common
administrative facilities and support (eg, along the lines of the SHOUT or HACC
models), and might also some kind of oversight and co-ordination role.

           “My offsider wanted to contribute here today, too, but we also needed to find a new
           photocopier, so she got elected to do that. With so few people, it’s hard to do what we
           do, plus keep the place going.”


2.5.7 Attitudinal, Social and Cultural Barriers
There are carers who may be eligible for services, but find service access difficult because
of stereotypical attitudes towards their age, gender, class, race or type of disability.

       “People with acquired brain injury are a particular case in point – a lot of people make
       value judgements about them and don’t believe that they deserve help. This is not fair.”

       “The problem with many forms of mental illness is that they are episodic, so a person
       who will often appear normal to outsiders because they are on their best behaviour can be
       hell to live with at home, but no-one will listen to you.”
Reports indicate stigma and exclusion of people with disabilities, language barriers,
cultural insensitivities from staff, lack of cultural appropriate services and shortages in the
availability of interpreters and of bilingual and bicultural professionals in the service
system.

As discussed elsewhere in this report, mistrust in the service system is reported from
carers from culturally diverse backgrounds, Indigenous carers, young carers, as well as
from some people being cared for who may be reluctant for the carer to seek support or
assistance.

       “It’s very difficult when they are the only Indigenous person in the old people’s home –
       they want to be with their own people, and the staff don’t understand them. There are a
       lot of older aborigines in Canberra and we need a facility or a whole wing of our own.”

       “We have found in our (Finnish) community that it helps a lot to get all the old people
       together to meet and talk about it. This breaks down the barriers and if even if they
       aren’t carers now, they can still help the others.”

       “The Italian community in Canberra has generally been here for a long time, and we’ve
       put our own services in place, particularly for the old people. But they are very reluctant
       to use other services they aren’t used to, especially the ones whose English isn’t very good.
       This must be even more widespread among other communities like those having recently
       arrived from various Asian countries.”

       “There are many people here with religious and ethnic belief that prevent them from
       seeking mainstream services. And they keep their problems to themselves, even from
       others in their own communities.”


2.5.8 Economic Barriers
Carers on low incomes are reported to experience difficulties accessing support. They
may lack access to affordable transport and money required to access some services.
They may incur high costs in purchasing assistive equipment and pharmaceuticals.
       “Medications for a lot of conditions are heavily subsidised, I respect that, but it doesn’t
       help much when you are on a pension and still have to try to find $60 to $80 a week for
       subsidised medications – they should be free if you’re on a pension.”

       “We can’t afford to repair the car, so we can’t get about anymore expect by public
       transport, so it’s limited what we can do and where we can go, now.”

       “Everywhere you go you have to pay something. It may only be a few dollars for morning
       tea or a nominal figure for a treatment, but it all adds up. And when you haven’t got
       much money left and the government only pays you a pittance, it can add up to a lot more
       than you can afford. The neighbours say I should pay someone to mow my lawn because
       it’s untidy, but where am I supposed to find the money for things like that?”

Being a carer often prevents people from earning (extra) income even where they have
the skills and experience. This can result in people eating into their savings and assets,
even for those who have good earning potential. Over time, they can also lose skills and
confidence, and not keep up with changes in technology. Greater flexibility of working
hours (eg, more evening and weekend positions) and working conditions (eg, being able
to work from home) would assist many carers to maintain greater financial independence.

       “I’m not a low income earner by choice. I’m an experienced chef and I’ve also owned and
       run restaurants and cafes. After (my daughter) started needing more attention at home,
       I even found a mobile lunchtime snack business that I managed to run successfully for
       several years. But now that she needs almost full-time attention, I’ve had to give
       everything up, and it really hurts, not being able to pay our way anymore. I’m thinking
       of preparing food from home and having someone else sell and deliver it for me, but I
       haven’t got around to it yet because of limited time.”

       “I live in Ainslie and I’m battling to keep up. People assume I’ve got money because of
       where I live in a house they think is worth a lot of money. But it’s rundown and a dump
       now, and they don’t realise it was an ordinary house in an ordinary suburb when we
       bought it long ago.”
The consultations reveal that some carers, particularly hidden carers do not attempt to
access financial and other support even when they are entitled to it, either because they
are unaware of their entitlement, or choose not to take them up for their own reasons.




Consultation Methodology
To reach the various stakeholder groups most effectively, and to ensure that the views of
a very wide range of carers and the people they care for were included, a research-based
consultation approach was adopted.

Advertisements were placed in the Canberra Times calling for people to register to take
part in the consultations, and services providers, peak bodies and other stakeholders were
also notified. To broaden the range of carers taking part (including hidden carers who
were unlikely to respond to an advertisement), we used social research respondent
recruitment techniques.

The consultation process itself involved a series of forums or focus group discussions (6
to 9 people per group) and small group sessions (2-5 people per session) in conveniently
located public facilities (O’Connell Centre, Ainslie Football Club, Hellenic Club, Forrest
Inn), and one-on-one in-depth interviews with some stakeholders and with many carers
and people being cared for (particularly to include those who could not easily travel or
leave home).

Wherever possible, the discussion paper was provided to people for their perusal prior to
attending the consultations. All consultations were conducted by Les Winton, Managing
Director of Artcraft Research, and most were also observed by the Department. A total
of 106 people (+ kids to go) took part in the consultations (so far), made up as follows:
 Stakeholder Category                    Method of coverage                  People included
 Carers (current, potential and          Focus groups, small group                   51
 former):                                sessions and in-depth
                                         interviews
 People (currently and potentially)      Focus groups, small group                   33
 being cared for:                        sessions and in-depth
                                         interviews
 ACT service providers:                  Focus groups and in-depth                   25
                                         interviews
 Peak consumer and organization          Focus groups and in-depth                    7
 bodies:                                 interviews
 Ministerial Consultative Councils:      In-depth interviews                          3
                                         Total people consulted                     119



In general we used a non-directive approach in undertaking the consultations. In general people
were firstly asked to highlight the important issues for them, and then the ensuing discussion was
allowed to run its course. This proved very valuable in revealing spontaneously the nature, range
and scope of feelings of people on various issues. Then the balance of each session involved
focussing the discussion to ensure an appropriate coverage of issues of relevance in achieving the
study objectives within any given session. At the end of each session, people were encouraged
to contact us where on reflection they wanted to add to their contribution, and some have
subsequently done so. Most forums and focus group discussions took around 1½ to 2 hours,
and the small group sessions and in-depth interviews averaged 1 to 1½ hours.
Appendix: Organisations who participated in the Consultation
Process
Carers and Care Receivers:
     Many carers and care receivers preferred not be named publicly, so we have chosen not
      to list any of the 51 Carers and 33 Care Receivers who took part in the consultations.

Service Organisations:
     ACT Community Care - Integrated Health Care Program
     ADACAS
     Advocacy Action
     Autism ACT
     Belconnen Community Service
     Canberra and Queanbeyan ADHD Support Group
     Canberra Institute of Technology (Skills for Carers Program)
     Carers ACT
     Centacare
     CIRSACT
     Community & Health Services Complaints Commissioner
     Community Options
     CYCLOPS
     Disability ACT
     Fabric
     FACS - Carer payment and allowance section
     Goodwin Homes
     Home and Community Care Program
     Koomarri
     Ngunnawal Aboriginal Corporation
     Red Cross
     Respite Care ACT
     Richmond Fellowship
     Therapy ACT
     YWCA (also received written submission)


Peak Organisations:
     ACROD
     ACT Council of Social Service
      Client Guardian Representative Forum
      Community and Health Works (ITAB)
      Council on the Ageing
      Disabled Person's Initiative
      Mental Health Consumer Network

Ministerial Advisory Councils:
      Disability Advisory Council
      Ministerial Advisory Council on Adult and Community Education
      Ministerial Advisory Council on the Ageing

				
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