Transcript Slide 1

Accident Compensation
Corporation
- TBI Strategy Development
Client Research Top-line
November 2011
• Objectives
• Methodology
• Key themes emerging
o
o
o
Current range of services.
Support to return to work.
Future services.
Contents
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• To explore with clients who have traumatic brain injuries
their experiences of ACC services in terms of what is
working well and what is not working so well.
• The outcomes of this research will inform a national
evidence based strategy on TBI services for more
moderate to severe TBI clients aged 16 years and over.
Objectives
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•
ACC Ethics Approval was obtained to conduct the
research. A key requirement was an opt in process
where ACC clients who wished to take part could contact
ACC. An invitation letter was sent to a selection of TBI
clients in the locations for the research. In addition ACC
followed up by phone with those who had not opted in.
•
A database was collated by ACC of all those who opted
in or agreed at the follow-up phone call. A total of 53
clients were available for recruitment initially and ACC
sent out an additional round of invitations to top-up the
lists resulting in a further 53. The final database was
provided to UMR for recruitment.
•
Mini focus discussion groups were conducted in Auckland,
Christchurch, Dunedin and Invercargill. Depth interviews
were conducted in Auckland, Hamilton and Wellington.
Methodology
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•
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Methodology
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A total of 34 clients participated in the research as
follows:
3 x mini groups in Auckland plus 1 support person
and 2 depth interviews N= 13.
3 x depth interviews Hamilton N= 3.
4 x depth interviews Wellington N= 4.
1x mini group in Christchurch N= 6 plus 1 support person.
1 x mini group in Invercargill N= 4 plus 2 support persons.
1 x mini group in Dunedin N= 4.
•
It should be noted that while additional participants
wished to take part, to meet the timeframe for the
research we were unable to accommodate them all.
•
The main bulk of the research was conducted from
Monday 10th October – 18th October 2011. Some
additional interviews are continuing.
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The following are the topline findings. The reader
should note that transcripts and notes are currently
being analysed and emphasis may change in the final
report.
•
A presentation of the key findings is scheduled for
Tuesday 15th November. The final reporting format will
be discussed at this meeting.
Reporting
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Key Findings
• TBI clients are a huge mix and come from a wide range of
backgrounds, employment and varying family support;
some have had their injury since birth/ childhood and
know no different; while others are still grieving for their
former self and changed opportunities from injuries
sustained decades ago.
About the
participants
Observations
• Some are keen for more ACC involvement while others
prefer to have ACC in the background and do not want
their TBI widely known.
• Some have had their injury recently and are heavily
involved with ACC while others found it hard to recall
what ACC services they were receiving, if any.
• Participants valued the opportunity to take part and were
keen for ACC to understand how the TBI affected their
lives and their families.
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• Key services identified include the full range of inpatient
and community rehabilitation services provided by ACC.
• It was expected that specialist TBI rehabilitation health
professionals and services were available.
Current
Services
• Services that made a difference were those that helped
clients regain and maintain independence. Once clients
were back home, support workers who enabled clients to do
every day activities were particularly valued. Clients were
needing to relearn activities of daily living in a safe
environment.
• Also important were rehabilitation services that supported
meaningful activities during the day and returning to work.
For some their involvement at places like the Stewart
Centre was ‘their work.’
• A number of clients mentioned the importance of physical
activity and participating in gym, swimming and
physiotherapy. It was apparent that attending gym sessions
not only improved physical ability but provided some
structure to client’s lives, got them out of the house;
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enhanced socialisation and improved brain function.
• A number of improvements to services were identified.
The primary improvements were focused on how
community therapies were managed:
o A better process for transitioning clients through ACC funded
services to independently funding (if required e.g. gym)
Improvements
1. Timeframes for services were too short with therapies just beginning to
make a difference when they were terminated
2. Clients could not always afford these services when ACC stopped
funding; however they missed the socialisation and other benefits of
the therapies.
o More flexibility around timeframes
o Supporting a wider range of therapies such as massage therapy
which was beneficial for people with TBI.
o Communication and relationship building based on trust and
respect in the client’s viewpoint.
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• Participants had experienced a wide variety of case
managers/ equivalent ranging from the good to the not
so good. Overwhelmingly clients were exasperated with
changing case managers and staff turnover.
Case
Manager
• The factor that made the difference for clients were
those case managers who could listen to clients and show
‘real’ understanding of the client’s needs and situation.
Critically, participants did not want to be ‘talked down
to’ or feel directed by their case manager.
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• The underlying premise and philosophy around RTW
should be that ‘clients want to RTW’.
• Also important is showing understanding of the effect of
the TBI on future employment; especially fatigue and
safety issues.
• Key factors for supporting RTW include:
o
o
Return to
Work
o
o
Meaningful work
Work that has a link with former employment/ interests
Explaining the process and each component in the RTW support
that ACC works through
Part-time work is more doable/ flexible work
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Recognise the needs
of the family
Listen to the family
Identify a liaison
person who can be
bridge the gap in
understanding of TBI
Treated as an individual
AND that my opinion counts
Support from a mentor/
someone who ‘really’ knows
TBI
Experts in TBI/ medical
assessments
Support for involvement in
community Fu
activities
Community rehabilitation
Case managers who are
professional and well
trained in TBI
Information on services
Community
Family
Client
How could ACC services be provided in the future?
Supporting
independence
Information and
guidance on what is
available
Recognise the value of
support workers
Support to RTW
Wider community
understanding about
TBI
Raise awareness of TBI in
the community
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Current Services
Allied Health Professionals
• Psychologist
o
Services
that make a
difference
Being able to talk about issues; understand how the
TBI was affecting them; mentor.
• Occupational therapist
o
o
o
Motivation and providing strategies to manage/
organise the day
Support to find work; day activities
Fatigue strategies.
• Physiotherapist
o
Keeping you physically active; keeps the brain
working.
• Speech Language Therapist
o
Communication; addressing speech impediments.
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Specialist medical specialists & rehabilitation
services
• Neurosurgeon/ Neurologist
o
Respect for their opinion; they are specialists in the
area of TBI and impact.
Services
• Psychiatrist
that make a
difference o Respect for their opinion; they are specialists in the
area of mental health issues arising from the TBI.
• ISIS, Cavit ABI, Burwood
o
Some found the services excellent; others had a more
love/hate relationship - note for many clients their
main goal is to leave and go home.
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Home Support
Services
that make a
difference
•
Support person
o
Support at home to do every day activities; someone
who accompanies you and encourages you to do stuff;
relearn activities of daily living.
Encourages and supports community involvement and
socialisation.
o
Gym
•
o
Attendance at a gym for many clients provided
meaning to their day; as well as physical
rehabilitation. Spin-off benefits included
socialisation; improved brain activity.
Ongoing exercise is key.
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Community Rehabilitation
Services
that make a
difference
•
Challenge Trust; Stewart Centre; Brain Injury
Support groups; Dunedin Training Centre
o
Meaningful activities during the day; support to
prepare for return to work; some regarded this as
their work.
Have staff who really do understand TBI.
o
……they train you up to get a job. They even give you a job. It’s just
that whenever there’s a job vacancy somewhere around Dunedin, they
actually put your name – they’ll tell you about it and then if you want to
go for it, they’ll take you down and you can go for it. There’s only one
person out of everybody that usually works at the training centre that
can handle me and [name], because you know how with brain injury
you’ve got a slow mind. Yeah, well this guy just sits down, plays cards
with us, makes us cups of coffee. Takes us for a drive to say hello to
my grandmother.
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Service transitions
Service
Improvements
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It is difficult for clients when they have a round of
services approved e.g. Physio; gym; swimming and this
comes to an end. While some are able to pick up the
cost themselves others find this more difficult and miss
the activities when they end.
•
There needs to be some way of planning/ supporting
clients through this process.
•
Often clients were just starting to improve when the
ACC funded services came to an end.
•
And there needs to be support for transitions from
hospital to home, community rehabilitation services
need to be in place; its different if transitioning to
inpatient rehabilitation as all the therapy services are
in place.
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More flexible rehabilitation rules
Service
Improvements
•
While acupuncture is funded, massage therapy is not
recognised.
ACC rules on what is viewed as
rehabilitation and what that entails restricts what some
clients might find helpful such as massage therapy.
•
Flexibility around timeframes for rehabilitation was also
suggested; sometimes things are not ‘fixed that fast’.
Positive communication
•
•
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Clients want more trust and respect from ACC in
communications and discussions on service planning and
needs.
Also they would like ACC to be more positive about
service needs.
And they want ACC to actually listen to clients and
recognise that clients are the one’s living with the TBI.
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Communication among health professionals
Service
Improvements
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With multiple assessments and health professionals
involved in rehabilitation it was important that health
professionals collaborated and shared their information
to ensure treatment is maximised and also on the ‘same
page’.
•
Conflicting messages are distressing for clients.
Two yearly medical assessment
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Clients would like ACC to be more proactive in providing
services. One suggestion was to have an independent
medical assessment every two years which would
identify potential issues.
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It was thought that in the long run this may save ACC
money and also be a positive step for clients.
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Those involved in planning included:
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Service
Planning
Inpatient rehabilitation service e.g. CAVIT
Family/ friends
Assessor/ OT (someone independent of ACC and family)
Case manager
Sometimes GP
Some also mentioned unprompted the Lifetime
Rehabilitation Plan/ Support Plan:
•
Can be helpful; those who recalled the LTRP found it
helpful to cover off all aspects of their support and
rehabilitation needs with input from a range of people.
•
Support plan is helpful but caution needed on
establishment of goals and objectives; big ideas can
sometimes set up client to fail; needs to be realistic.
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Positive and supportive relationships
•
Clients had experienced a range of case manager
experiences but in the main were able to recall ones
that had provided stand-out service.
What makes a good case manager (TBI)
Case
•
Manager/
Support
Coordinator
Supportive; able to be contacted and responsive; email;
phone; face to face; drop into ACC.
Note this can be a bit more difficult with some Support Coordinators
not located in the same city.
•
Honest and straight-up; can outline what ACC can do
AND also outline client responsibility in a positive way.
•
Able to address issues that arise with their ACC
managers.
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What makes a good case manager (TBI)
•
Needs to be ‘real’; know their clients
o
Read the client file, read the history, especially before
assessment meetings etc.
Understands; easy to talk to; not demanding and
directive.
Not talked down to.
Listen to clients point of view “We’re living it.”
Really understand TBI/ try to understand.
Trust and respect.
o
Case
Manager/
Support
Coordinator
o
o
o
o
….after two months of rudimentary computer training I had a discussion
with her and she turned around and she goes “well are you working at
the moment?” and it was like “oh my God, what a question to ask”. I’m
going to be programming for one of the top programmers in the country
or something!
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Dual role and relationship
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Supporting client and also following policies of ACC e.g.
feeling that can be supportive and then a policy/ change
within ACC and relationship changes.
1.
2.
Change of case manager due to structural changes.
Following internal policy to ‘get everyone off the books’.
•
Ideally clients would like someone who will stay with
them for at least two years.
At the minimum they should be informed of a change
and the new person communicate and introduce
themselves as soon as possible; ideally at least once
face to face.
Case
Manager/
Support
Staff Turnover
Coordinator
• All mentioned a degree of case manager turnover.
• Varying quality of case manager with some stand-outs.
Concerns
•
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Return to Work Experiences
Graduated RTW
Helpful
Services
•
Having a graduated return to work is important as many
TBI clients cannot return to full-time work very quickly;
if at all.
•
Part-time work is more doable.
Supportive Case Manager
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Clients who can work with their case manager and
discuss issues as they arise at work.
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Understanding the RTW Process
•
•
Improvements
Being informed and involved in developing the steps
required e.g. Assessment for work; job training; finding
work; what support is available and what clients have to
pay for themselves.
Need to be careful not to ‘push’ people into working too
long as can be more detrimental in the long-term when
they fail.
Acknowledge that most people will want to
work if they can
•
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Come from a positive framework when working with
clients on RTW.
Clients want to contribute.
Meaningful work
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Most clients want meaningful work that has some tie-in
with their former pre-injury life; e.g. practical people
find it difficult to be contemplating office work.
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Understanding the affect of TBI on RTW
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Reliability and fatigue play a big factor in RTW.
Need to be realistic about what types of work can be
done and also number of hours.
Recognise recovery phase impact on RTW.
Employers need to show understanding of TBI
Improvements
•
•
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Flexible hours; mornings are better.
Understanding limitations; fatigue issues; mood swings
etc.
Address employer discrimination.
Include family
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In the initial stages, clients are in recovery mode and
don’t always know what they want.
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Future Services
Be treated as an individual and with respect
o
o
o
o
o
o
For the
client
o
Individualised/ all are slightly different/ don’t stereotype/
recognise individual personality.
Supportive of your opinions/ of you as a person.
Be positive; encouragement and support to reach full
potential.
Show respect for client’s viewpoints.
Ask client what services are working for you? And follow it
through.
ACC is here to help us/ client to choose when to leave.
Customise service and support.
Mentor/ ‘someone who knows TBI’
o
o
o
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o
Mentor – someone who has lived it.
People who understand TBI – someone that you have
something in common with.
Support to help the person understand:
the change in life circumstances
understands ‘me’
similar background/ life experience.
Motivational specialist post-injury – knows the difference
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between being pushed and encouraged.
Top-notch TBI medical assessments
o
o
o
o
Availability to medical assessments – MRI scans to identify
TBI.
Medical people need to know – be knowledgeable about TBI.
Check for Alzheimer’s – recognise the link to TBI.
More independent assessments – PROACTIVE – At least two
yearly.
Community support
o
o
For the
client
o
o
Support worker to get into the community.
Transportation – taxis, public transport.
Being safe; be aware that with a TBI everyday things like
getting around can be daunting.
Recognised importance of daily activities and meaning to the
day.
Community Rehabilitation and activities
o
o
o
o
o
o
Gym – but suitable for people with TBI – have room to
themselves to do physical activity.
Rehabilitation services like Cavit ABI, ISIS.
Recognised importance of daily activities and meaning to the
day.
Encourage you to do a course, use your brain.
Lifetime Rehabilitation Plan/ similar – yearly.
Psychologist – someone to talk to.
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Well trained and professional ACC personnel – case
manager
o
o
o
o
For the
client
o
o
Ongoing liaison – be consistent with ACC contact.
Good explanations.
Be focused on brain injury – improve – recognise complexity
of head injuries.
Not so minimalist / stingy – get it right first time.
Show understanding of head injuries.
Show patience when supporting people back into the
workforce.
Information on services available
o
o
Be made aware of service available/ not sure how ACC can
support you into work.
Information on rehabilitation options.
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Raise awareness about TBI in the community
o
o
Awareness to people in general/ employers about head
injuries.
Prevention – messages to young people to prevent head
injuries.
For the
client
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Recognise the needs of the family
o
o
o
o
o
o
For Family
o
o
o
Assessment needs of family –are you coping alright?
ACC need to explain TBI effects to other family/friends etc.
Recognise family are a large part of client’s lives; keep
family informed.
Don’t expect family to do everything/ acknowledge the
family’s support.
Provide some support, independent of the client.
Offer family counselling and support.
Family support for transport.
Financial advice to the family.
Provide them with knowledge both written and verbal.
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Listen to the family/ include family
o
o
o
For Family
Listen to the family.
Trust the family’s viewpoint.
E.G. Support needs to be more ongoing/ can’t be terminated
too abruptly.
Identify a liaison person / bridge between client and
family
o
o
Someone to liaise and explain the changes the ‘client’ is going
through e.g. when client goes through mood swings.
Family includes the kids.
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Supporting independence
o
Being self independent – e.g. meals on Ice.
o
Physical limitations.

Address this somehow
o
Communication difficulties.

Address this somehow
o
Involvement
in
community
o
Supportive organisations to help you be involved.
Practical/ show understanding of injuries.
Information and guidance on what is available in the
community.
o
o
o
o
o
Being part of a church - community - safer environment.
Being safe/learning about the area you are in.
Knowing how to get about in your local community.
Awareness of support groups e.g. rural
Referrals to, provide information and encourage clients to
attend.
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Recognise value of support workers
o
o
One on one services like ‘Goodwood Park Health
Home support to help you be involved.
Support to RTW
o
o
Involvement
in
community
o
o
o
o
Understand that TBI clients can’t be pressured into too much
work too soon.
Understand that TBI often have multiple injuries (physical as
well as TBI) which need to be addressed as part of RTW.
Understand how the client is working through the work
process.
Support and inform employers on TBI impacts.
Help to find work that is positive and interesting.
Be realistic.
.
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Attitudes towards TBI
o
o
o
o
Education and awareness e.g. like mental health awareness
advertising; Brain Injury Awareness.
‘Don’t be made to feel like a criminal.
Showing respect –given freely.
Wider community understand about TBI.
Involvement
in
community
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