Accident Compensation Corporation - TBI Strategy Development Client Research Top-line November 2011.

Accident Compensation Corporation

- TBI Strategy Development

Client Research Top-line

November 2011

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ContentsContents

• Objectives• Methodology• Key themes emergingo Current range of services.o Support to return to work.o Future services.

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ObjectiveObjectivess

• 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.

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MethodolMethodologyogy

• 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.

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MethodolMethodologyogy

• A total of 34 clients participated in the research as follows:

3 x mini groups in Auckland plus 1 support personand 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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ReportingReporting

• 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.

Key Findings

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About the About the participaparticipa

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ObservatioObservationsns

• 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.

• 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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Current Current ServicesServices

• 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.

• 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; enhanced socialisation and improved brain function.

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ImprovemeImprovementsnts

• 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)

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 timeframeso 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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Case Case ManagerManager

• 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.

• 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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Return to Return to WorkWork

• 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 Meaningful worko Work that has a link with former employment/ interestso Explaining the process and each component in the RTW

support that ACC works througho Part-time work is more doable/ flexible work

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FuFu

How could ACC services be provided in the future?How could ACC services be provided in the future?

Current Services

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Services Services that that

make a make a differencdifferenc

ee

Allied Health ProfessionalsAllied Health Professionals• Psychologisto Being able to talk about issues; understand how

the TBI was affecting them; mentor.

• Occupational therapisto Motivation and providing strategies to manage/

organise the dayo Support to find work; day activitieso Fatigue strategies.

• Physiotherapisto Keeping you physically active; keeps the brain

working.

• Speech Language Therapisto Communication; addressing speech impediments.

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ee

Specialist medical specialists & Specialist medical specialists & rehabilitationrehabilitationservicesservices

• Neurosurgeon/ Neurologisto Respect for their opinion; they are specialists in

the area of TBI and impact.

• Psychiatristo Respect for their opinion; they are specialists in

the area of mental health issues arising from the TBI.

• ISIS, Cavit ABI, Burwoodo 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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ee

Home SupportHome Support• Support persono Support at home to do every day activities;

someone who accompanies you and encourages you to do stuff; relearn activities of daily living.

o Encourages and supports community involvement and socialisation.

GymGym• 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.

o Ongoing exercise is key.

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ee

Community RehabilitationCommunity Rehabilitation• 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.

o Have staff who really do understand TBI.……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 Service ImprovemeImproveme

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Service transitionsService transitions• 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 rulesMore flexible rehabilitation rules• 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 communicationPositive communication• 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 Communication among health professionalsprofessionals

• 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 assessmentTwo yearly medical assessment

• 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.

• 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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Service Service PlanningPlanning

Those involved in planning included:Those involved in planning included:• 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 Some also mentioned unprompted the Lifetime Rehabilitation Plan/ Support Lifetime Rehabilitation Plan/ Support PlanPlan::

• 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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Case Case Manager/Manager/SupportSupport

CoordinatCoordinatoror

Positive and supportive relationshipsPositive 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)What makes a good case manager (TBI)• 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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CoordinatCoordinatoror

What makes a good case manager (TBI)What makes a good case manager (TBI)• Needs to be ‘real’; know their clientso Read the client file, read the history, especially

before assessment meetings etc.o Understands; easy to talk to; not demanding and

directive.o Not talked down to.o Listen to clients point of view “We’re living it.”o Really understand TBI/ try to understand.o Trust and respect.

….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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CoordinatCoordinatoror--

ConcernsConcerns

Dual role and relationshipDual role and relationship• 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. Change of case manager due to structural changes.2. Following internal policy to ‘get everyone off the books’.

Staff TurnoverStaff Turnover• All mentioned a degree of case manager turnover.• Varying quality of case manager with some stand-

outs.• 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.

Return to Work Experiences

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HelpfulHelpfulServicesServices

Graduated RTWGraduated RTW• 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 ManagerSupportive Case Manager• Clients who can work with their case manager and

discuss issues as they arise at work.

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Understanding the RTW ProcessUnderstanding the RTW Process• 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 Acknowledge that most people will want to work if they canto work if they can

• Come from a positive framework when working with clients on RTW.

• Clients want to contribute.

Meaningful workMeaningful work• 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 RTWUnderstanding the affect of TBI on RTW• 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 Employers need to show understanding of TBIof TBI

• Flexible hours; mornings are better.• Understanding limitations; fatigue issues; mood

swings etc.• Address employer discrimination.

Include familyInclude family• In the initial stages, clients are in recovery mode

and don’t always know what they want.

Future Services

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For the For the clientclient

Be treated as an individual and with respectBe treated as an individual and with respecto Individualised/ all are slightly different/ don’t

stereotype/ recognise individual personality.o Supportive of your opinions/ of you as a person.o Be positive; encouragement and support to reach full

potential.o Show respect for client’s viewpoints.o Ask client what services are working for you? And

follow it through.o ACC is here to help us/ client to choose when to leave.o Customise service and support.

Mentor/ ‘someone who knows TBI’Mentor/ ‘someone who knows TBI’o Mentor – someone who has lived it.o People who understand TBI – someone that you have

something in common with.o Support to help the person understand: the change in life circumstances understands ‘me’ similar background/ life experience.o Motivational specialist post-injury – knows the

difference between being pushed and encouraged.

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Top-notch TBI medical assessmentsTop-notch TBI medical assessmentso Availability to medical assessments – MRI scans to

identify TBI.o Medical people need to know – be knowledgeable about

TBI.o Check for Alzheimer’s – recognise the link to TBI.o More independent assessments – PROACTIVE – At least

two yearly.Community supportCommunity supporto Support worker to get into the community.o Transportation – taxis, public transport.o Being safe; be aware that with a TBI everyday things like

getting around can be daunting.o Recognised importance of daily activities and meaning

to the day.Community Rehabilitation and activitiesCommunity Rehabilitation and activitieso Gym – but suitable for people with TBI – have room to

themselves to do physical activity.o Rehabilitation services like Cavit ABI, ISIS.o Recognised importance of daily activities and meaning

to the day.o Encourage you to do a course, use your brain.o Lifetime Rehabilitation Plan/ similar – yearly.o Psychologist – someone to talk to.

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Well trained and professional ACC personnel – Well trained and professional ACC personnel – case managercase manager

o Ongoing liaison – be consistent with ACC contact.o Good explanations.o Be focused on brain injury – improve – recognise

complexity of head injuries.o Not so minimalist / stingy – get it right first time.o Show understanding of head injuries.o Show patience when supporting people back into the

workforce.

Information on services availableInformation on services availableo Be made aware of service available/ not sure how ACC

can support you into work.o Information on rehabilitation options.

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Raise awareness about TBI in the communityRaise awareness about TBI in the communityo Awareness to people in general/ employers about head

injuries.o Prevention – messages to young people to prevent

head injuries.

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For For FamilyFamily

Recognise the needs of the familyRecognise the needs of the familyo Assessment needs of family –are you coping alright?o ACC need to explain TBI effects to other family/friends

etc.o Recognise family are a large part of client’s lives; keep

family informed.o Don’t expect family to do everything/ acknowledge the

family’s support.o Provide some support, independent of the client.o Offer family counselling and support.o Family support for transport.o Financial advice to the family.o Provide them with knowledge both written and verbal.

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For For FamilyFamily

Listen to the family/ include familyListen to the family/ include familyo Listen to the family.o Trust the family’s viewpoint.o E.G. Support needs to be more ongoing/ can’t be

terminated too abruptly.

Identify a liaison person / bridge between client Identify a liaison person / bridge between client and familyand family

o Someone to liaise and explain the changes the ‘client’ is going through e.g. when client goes through mood swings.

o Family includes the kids.

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InvolvemeInvolvement in nt in

communitcommunityy

Supporting independence Supporting independence o Being self independent – e.g. meals on Ice.o Physical limitations. Address this somehowo Communication difficulties. Address this somehowo Supportive organisations to help you be involved.o Practical/ show understanding of injuries.

Information and guidance on what is available Information and guidance on what is available in the communityin the community.

o Being part of a church - community - safer environment.o Being safe/learning about the area you are in.o Knowing how to get about in your local community.o Awareness of support groups e.g. ruralo Referrals to, provide information and encourage clients

to attend.

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communitcommunityy

Recognise value of support workers Recognise value of support workers o One on one services like ‘Goodwood Park Healtho Home support to help you be involved.

Support to RTW Support to RTW o Understand that TBI clients can’t be pressured into too

much work too soon.o Understand that TBI often have multiple injuries

(physical as well as TBI) which need to be addressed as part of RTW.

o Understand how the client is working through the work process.

o Support and inform employers on TBI impacts.o Help to find work that is positive and interesting.o Be realistic.

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communitcommunityy

Attitudes towards TBIAttitudes towards TBIo Education and awareness e.g. like mental health

awareness advertising; Brain Injury Awareness.o ‘Don’t be made to feel like a criminal.o Showing respect –given freely.o Wider community understand about TBI.

Accident Compensation Corporation - TBI Strategy Development Client Research Top-line November 2011.

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Transcript of Accident Compensation Corporation - TBI Strategy Development Client Research Top-line November 2011.