WHO CARES – WE DO 24/7!
BRAINS Carer Support Group
Supporting Family Carers
Vanda Fear – Family Carer and Co- Founder/Co-Facilitator
Joe Micallef – Family Carer and Co-Facilitator
Jacqui Pierce – Manager ARCsupport, Karingal and Co-facilitator
Introducing BRAINS Carer Support Group
Barwon
Region
Acquired brain injury(ABI)
Information
Networks
Support
Carer Support GroupEstablished 2012
“Head injuries do not happen to
individuals;
they happen to entire families.”(Tony Moore, Rehab. Specialist and Author of Cry of the Damaged Man and Echoes of the Early Tides)
Those family members need access to peer and mutual
support to walk the lifelong journey beside their loved
one with a brain injury.
WHY WE NEEDED BRAINS CSG
WHY WE NEEDED BRAINS CSG
Carer Health and Wellbeing is significantly impacted
upon.
“While the impact on the person experiencing a brain
injury can’t be minimised, it’s those around them who
must never be forgotten…Carers have to motivate,
prod, cajole and protect and in so doing often neglect
themselves.”
(Dr Norman Swan in the Preface of “Out of Calamity” by Roger Rees 2011)
WHY WE NEEDED BRAINS CSG
The Impact of Caring on the Health and Wellbeing of Carers
“… the caring role potentially impacts significantly on all
aspects of carers’ lives, affecting carers’ physical and
psychological health, emotional wellbeing and social
relationships. These assertions are well supported by
the outcomes of recent research”.
Who Cares ...? Report on the inquiry into better support for carers
House of Representatives
Standing Committee on Family, Community, Housing and Youth April 2009
WHY WE NEEDED BRAINS CSG
Key findings from the Australian Unity Wellbeing Index Survey
include:
• carers have the lowest collective wellbeing of any population group yet
discovered, with the wellbeing of carers who live with the person
requiring care being the lowest ever recorded for a large group of
people;
• carers have an average stress rating that is classified as moderate
depression;
• carers are more likely to experience chronic pain than is normal and the
wellbeing of carers is more vulnerable to pain;
• carers are highly likely to be carrying an injury; and
• wellbeing decreases linearly as the number of hours spent caring
increases.3
WHY WE NEEDED BRAINS CSG
Social Isolation
Many carers report social isolation resulting from their caring role and the
evidence describes various reasons for this. Carers often describe self
imposed isolation and circumstantial isolation resulting from a lack of
available respite care as well as a lack of time, money or energy to
socialise.
Even with access to adequate supports and services, becoming a carer is
inherently stressful as the role usually arises in conjunction with a
traumatic and painful event that results in significant changes in the lives of
carers and their families.10
WHY WE NEEDED BRAINS CSG
International literature shows that ABI is 10 times more
common than Spinal Cord Injury and produces, on
average, 3 times the level of disability.
Two thirds of brain injuries are sustained under the age
of 24, however life expectancy of the individual with
brain injury is not appreciably shortened.
Therefore, a family member may, in the blink of an eye,
become a carer of a person with ABI and that role may
continue for decades
BACKGROUND TO ESTABLISHMENT
In a local level project report…
“In a moment, everything can change……”
Responding to the needs of families who have a
member with a severe Acquired Brain Injury or
Neurological ConditionFinal Report May 2006Report Prepared by: Jacqui Pierce, Jacqueline Pierce and Associates on behalf of Karingal Inc.
The following goal was identified…
From ideas to reality – an initial action plan
GOAL OBJECTIVES ACTIONS KEY STAKEHOLDERS or
DOCUMENTS To ensure all family members have access to a range of formal and informal support networks.
To ensure all families have access to home based computers, internet and email.
To establish formal face-to face family support networks.
To determine what informal opportunities exist for family support.
Continue to identify and connect to more families.
Work with BacLinks to establish an online family network.
Work with Headway and Brain Foundation Victoria to look at what exists in the Barwon area and what could be established.
Work with the Geelong Parent Network to examine ways of including these families in with this group.
Work with the Carer Respite Service and ensure all families are linked to this and have access to current supports and look at what else need to be developed for these families
Work with ABI Network to examine ways of including information and training sessions for families.
Review methods for identifying ‘hidden’ families and implement strategies.
Karingal Inc. – BacLinks Headway Brain Foundation Victoria Other peak bodies Geelong Parent Network Carer Respite Service ABI Network
BACKGROUND TO ESTABLISHMENT
Steps to establishment
"Nihil de nobis, sine nobis"
Nothing About Us Without Us!“
is a slogan used to communicate the idea that no
policy/practice should be decided or implemented by
any representative without the full and direct
participation of members the group(s) affected by that
policy/practice. This involves national, ethnic, disability-
based, or other groups that are often thought to be
marginalised from political, social, and economic
opportunities. This includes carers.
Steps to establishment
• Find some passionate family carers (who understand the power of peer
and mutual support) in your area to partner with.
• Find other key partners/organisations that assist with bringing the idea
to reality:
an organisation willing to auspice;
an organisation willing to provide a venue;
organisations willing to provide in-kind and/or financial assistance.
• Organise training for support group facilitators.
• Have a launch event and ensure media coverage to help spread the
word so the group becomes known.
• Hang in there the start can be slow!
• Stay family carer centred!
BRAINS CSG Launch Event March 8 2012
KEYNOTE SPEAKER:
Raelene Chapman, partner of 14 years and now also carer for Scott
McLean. Scott is a stuntman who has performed in the Matrix and Star
Wars film. Raelene and Scott’s lives were drastically changed when Scott
sustained a critical brain injury when a high-speed car chase went wrong
during the filming of blockbuster comedy The Hangover: Part II. Raelene,
who is also a professional stuntwomen, now spends the majority of her
time by Scott's side so she can be there for every small accomplishment
that he makes in his recovery.
BRAINS CSG Launch Event March 8 2012
Co-founders Jen and Vanda with Raelene
BRAINS CSG Launch Event March 8 2012
Co-founders Jen and Vanda with Raelene & Scott
BRAINS CSG Launch Event March 8 2012
Co-founders Jen and Vanda with Raelene & Scott
BRAINS CSG assisting family carers to find a way through it!
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