d) Building independence   Next B)

i) Introduction - Building independence

Quality human services are designed to promote independence. Most government funding accreditation standards and non-profit organisations espouse building independence as a value.

So why is building independence a key message for working with people with ABI?

Building independence for people with ABI is not the same as when you are providing services in a disease model, an aged care model, or a disability model of service.

In a disease model independence is in the context of the known progression of the disease.
In an aged care service independence is in the context of the ageing process.
In an intellectual disability service independence is in the context of a known intellectual disability and habilitation.

Within the ABI context independence can grow over time - even the long term.

Building an independent life will include (where possible)

  • work
  • leisure
  • finances
  • legal

Rehabilitation is the process of building independence.

Rehabilitation enables a person to become as independent as they possibly can. The goal is for the person to return to their previous abilities, activities and way of life as much as they possibly can. It means enabling the person to live with their remaining abilities and develop strategies to enable them to compensate and overcome new difficulties.

Rules of thumb

  1. People with an acquired brain injury can grow in their skills for independence in the short and long term (except where the ABI is caused by a degenerative disease).

  2. The rate of development can be slow and so not noticed. People give up too soon.

  3. Most people with a traumatic brain injury and many with other forms of ABI are young - they have a lot of life ahead of them and plenty of time to develop.

  4. People with an ABI often have some very good skills in some areas but very poor skills in other areas.

  5. People with ABI may need support to manage independent skills for life when they can't maintain a skill on their own.

Strategies

There are many strategies for promoting independence.
Building blocks include:

Identifying and prioritising issues
Setting goals
Monitoring progress

One worker said:

I guess another message is to remember to work alongside the client rather than do things for people.

This is a very big message: We are about enabling independence not about doing things for people. So if you are doing tasks like washing up, while it might seem easier for you to just get in and do it all, encourage participation so someone washes and the other person wipes. It is about working together and cementing those skills so that when a person doesn't have support they are able to function and do those things for themselves.

A person with ABI said:

I think the biggest thing that is noticeably still here with me since my accident is my independence and just doing things myself and knowing that they have to be done and knowing that I have to do them, and not relying on anyone else because I have to get to the point where I am going to be able to do things, everything by myself. I am not always going to be able to depend on someone else to be there to do it for me because that is the easy way out or whatever.

 

ii) Identifying and prioritising issues

The keys to identifying and prioritising issues are:

  • Coming up with ideas - how do you help the individual do this?
  • Recognizing the skills and strengths of the individual
  • Supporting the individual in prioritising issues

Helping the individual identify what they want to work on

The first step is to identify issues the individual wants to work on or areas they want to improve. The more meaningful or relevant the issue or activity is to the individual the greater the chance of success. When trying to enable the individual to identify areas to work on, ask an open question.

For example,

  • "What would you like to work on?"
  • "What do you think stops you from doing what you want to?"

Open ended questions provide the individual with the most control and helps independent decision making.

If the individual is not able to generate their own ideas or issues or areas to work on, you need to ask a question that has an option or alternative.

For example,

  • "What is a bigger issue, your temper or your memory?"
  • "Would you prefer to work on being able to prepare an evening meal or get your washing done?"

These questions still allow the individual to make their own decision. The number of options that are provided depends upon the individual's ability to manipulate information, reason and remember the options provided.

If the individual cannot remember information, another strategy is to write down the issues or alternatives and then work through them on paper. This allows the individual to refer to the information independently as required. This decreases their dependence upon the worker's memory and equips them with another strategy they can use in situations whenever their memory limits what they are doing.

Questions that might help you help the client identify their issues

These questions assist the support worker to understand the barriers to independence for the individual with a brain injury. However, it is essential that they identify their own issues and give them a priority for goal setting. The worker takes a supportive, not directive role in the complete process.

See Toolkit B Promoting Independence for examples.

Recognizing skills and strengths

Always recognise the skills the person has and try to find out how they previously performed the activity. Ask them to describe the process they would go through to do an activity. Again start with open ended questions.

For example,

  • "How would you go about doing that?"
  • "What do you think you need to do that?"
  • "Have you done it before?"
  • "How have you done it previously?"
  • "Can you remember how you have done it before?"

Asking open ended questions like this enables the individual to have control and demonstrates that support workers recognise the individual has abilities. It shows those working with the individual how much of an idea they have. Support or assistance needs can then be determined. If necessary provide simple or brief plans and ask them for more information.

For example,

  • "How are you going to do this?"
  • "What did you mean when you said this?"
  • "How are we going to do it?"
  • "What do you need to do it?"
  • "Is there anything you can look at that will give some help?"

Such questions enable the individual to organise themselves and their environments. This provides them with the opportunity to share their knowledge. Insight can be gained into how they used to do things so they can be helped to do these things this way again, if it is feasible.

 (c) Copyright - See: Toolkit B. Working Together Promoting Independence - www.TBIStaffTraining.info

 

iii) Tips for setting goals

The following are tips for setting goals when working with people with ABI.

Factors to consider when developing goals

  • Client centred not staff actions
  • Goal development vs goal imposition
  • Giving exact behavioural description of goals
  • Stating goals positively rather than negatively
  • Creating short-term goals vs long-term goals
  • Looking at improvement vs maintenance.

Writing goals

Remember: Goals need to be specific, measurable and time limited.

Some examples are:

I will remember all my appointments in 2 weeks
I will have enough food in my house for all my needs for 2 weeks.
I will keep track of when my bills are due and pay them on time within two weeks.
I will identify places to keep things in my house so I don't lose them, in one month.

To achieve each of these goals would require developing strategies (and identifying any necessary resources).
For example to achieve: I will have enough food in my house for all my needs for 2 weeks
will required:

  • menu plan
  • shopping list
  • work with support worker
  • etc

The following are too broad and general to be useful goals:

  • independently use public transport
  • increase opportunities for social interaction
  • improve arm function
  • improve personal hygiene
  • improve cooking skills

How to deal with unrealistic goals

  • allow learning through experience (consistent with cognitive abilities and achievable goals)
  • develop compensatory strategies
  • investigate alternatives
  • set priorities
  • break into smaller steps
  • give clear feedback about progress/lack of progress
  • don't challenge unrealistic goals, try and focus on achievable smaller goals
  • link achievable goals with unrealistic goals (rather than challenging unrealistic goals)

(c) Copyright - See: Toolkit B. Working Together Promoting Independence - www.TBIStaffTraining.info

iv) Monitoring: How to ask about how things are going?

This is one of the most difficult things for a person with a brain injury to do. They may not ask themselves questions about what they are doing and therefore may not realise if they are making a mistake. Questions can be asked to draw their attention to what they are doing and how they are doing it.

For example,

  • "How long do you have to leave that for?"
  • "When do you need to check it?"
  • "Is it time to check it?"
  • "Is that how you would normally do that?"
  • "What did the instructions say to do?"
  • "Are they the same?"

At the end of the activity, it is useful to get the individual to reflect on what they did, how they did it, what went well, what didn't go as planned and if there is any way they would change it next time. For some people with a brain injury it may be difficult for them to remember this information.

This is where information and feedback can be provided about how they went. It is important to highlight what they did well as well as what they had difficulty with. It is much easier to give good feedback as compared to areas of difficulty. Ask them questions about their own performance.

For example,

  • "How do you think you went?"
  • "Did everything go as you wanted it to?"
  • "What did you think you did well?"
  • "What areas could you improve on?"

If they are unable to recall in detail how they went, prompt them about their performance in a specific area where improvement could happen or which was a strength.

For example,

  • "What about when the chips were spitting fat?"
  • "What did you do?"
  • "Do you think it was smart to throw water on them?"
  • "What could you have done that would have been better?"
  • "Do you think that turning down the heat may be a better idea next time?"

The type of input provided does not have to be as clinical as these questions sound. By knowing what needs to be looked for and enabling the individual to be doing this, the questions asked and how they are asked, will become second nature. It is imperative the helper knows what the individual is working towards in the activity, what the individual is wanting to achieve. Consistency is the key.

Everyone, paid or unpaid carer, family and rehabilitation professionals should all be working with the individual toward their goals, using the same strategies.

 (c) Copyright - See: Toolkit B. Working Together Promoting Independence - www.TBIStaffTraining.info

iv) Toolkit B - “Getting it all Together” Working Together Promoting Independence

Toolkit B - “Getting it all Together” Working Together Promoting Independence is a resource for workers working with people with TBI.

It is on the wet site www.TBIStaffTraining.info

The resources in the kit have been designed to be used by people with TBI. It is also relevant for working with most people with ABIs.

The Kit contains practical information and tools the worker can use to assist an individual with a brain injury to:

  • Identify issues and set priorities
  • Set goals
  • Develop strategies to achieve the goals
  • Monitor progress.

The Kit includes tools and tips for practical strategies on everything from working with memory problems to doing the laundry. All the tools, tips and worksheets can be printed to give to the person with the ABI.

The Kit has been designed to be relevant throughout the lifespan and the changes experienced in different life stages.

This Kit aims to increase the independence, control, decision making and responsibility taken by individuals who have a brain injury, in day to day activities.

Individuals who have a brain injury and who have trialed sections of the Kit stated:

"It helped me to work out the little differences and do something about them"
"I realised how I can now help myself and not rely on others"
"I now know where all my money is going"
"I wish I had this years ago- it helps with the little things. Like remembering where I put things, how to use my diary and calendar- everything!"
"I only had to use the sections I needed to- getting out in the community and looking at getting back to work" .

 

 (c) Copyright - See: Toolkit B. Working Together Promoting Independence - www.TBIStaffTraining.info

Questions

Answer the following question:

Most of the clients your service works with are clients with an intellectual disability.

You have three new clients with an acquired brain injury. You have an existing staff member to support these clients.

You are talking with the staff member about the importance of building independence in working with people with acquired brain injury.

What are some of the points you make?

   Check your answers here

1. Intellectual disability is present from birth ABI is not.

2. People with an ABI have had a life before the ABI.

3. Working with people with ABI is rehabilitation - the goal is for the person to return to their previous abilities, activities and way of life as much as they possibly can. It means enabling the person to live with their remaining abilities and develop strategies to enable them to compensate and overcome new difficulties.

4. Most people with an ABI retain their pre-injury intellectual abilities, the injury having merely impaired the expression of these abilities.

5. With treatment and support, most people with an ABI can expect their symptoms to improve and to recover some of their former capabilities through rehabilitation. By contrast, people with an ID are more likely to be involved in habilitation programs (being able to make the most of their current capabilities).