Things to consider when choosing a service provider

My Plan. My Support. My Choice.

For young people with high care needs, by young people with high care needs.

CONTENTSAbout this guide..............................................................................................................

The Livewell Model ........................................................................................................

Different challenges according to environmental factors ..............................................

How person centered care is affected by the NDIS and what are the implications? ..

Conclusion ....................................................................................................................

References ....................................................................................................................

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This document is based on the Livewell model developed by Griffith University’s Health and Human Services Faculty along with Youngcare Australia. The model was designed in order to ensure the opinions and values of people with disabilities and the people around them are respected.

Youngcare intends to use this document as a best practice guide to ensure a high standard of care from the organisations that work in partnership with us. However, Youngcare acknowledges these opinions and values it can change over time.

This document will take you through each element of the Livewell model and how can be applied on a daily basis.

This guide has been developed by people with disabilities, for people with disabilities.

We will attempt to address the challenges that people with disabilities face in their daily lives, as well as how these challenges can be resolved. We will examine what it means for care and support to be person centered, and what this means in a person’s daily life.

It’s important to remember that at the time of writing this guide, the NDIS is still being fully implemented across Australia. Despite this, the guide will help you to prepare the tools you need when navigating the system. A particular area of focus for this guide is to ensure that you have the ability to have supported decision making if that is what you choose or require.

ABOUT THIS GUIDEThis guide is intended for people with disabilities and their support networks to help navigate the complex disability system.

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This guide will help you toprepare the tools you need to successfully navigate the NDIS.

THE LIVEWELL MODELContemporary health research supports a new conception of health and well-being, shifting from a single definition of health to a more overall view of overall well-being. Rather than using a single definition of health, it takes into account changing physical, emotional and social needs over time. It also allows individuals to understand and express their own health priorities, according to their personal circumstances. The model is designed to remove some of the barriers to ‘disability’ services, such as the tendency to focus on a lack of physical abilities rather than what matters to the individual. This can occur because people with disabilities are often set apart from the rest of society and treated differently. This can leave people with limited life experiences, and lots of other unmet needs.

This approach is particularly relevant for people with disabilities or chronic illnesses, especially those who require lifelong support. Since health and support needs are constantly changing, the failure to focus on the whole person can result in unmet needs and problems with service delivery. That is why flexibility is important. It allows for everybody to get the support they need at any given time, and will result in better outcomes across the board. Understanding this and making it work for you can be difficult.

The definition of ‘high care needs’ according to the Livewell Model apply to those who require full time medical support, through to those who need support with all assisted tasks for daily living that have a stable medical diagnosis. The Livewell approach is for all people who require physical support for personal care needs. The model was established to ensure that people with high care needs can have their support requirements met.

1Crozier, M., Muenchberger, H & Ehrlich, C. 2012. A Wellness Approach to a 24/7 Residential Model of care and support for young adults: A synthesis of the literature. Youngcare Griffith University Partnership.

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There are four evidence based components that combine to inform the model. Firstly, it is client based, so the model is informed by what the person with a disability requires, rather than relying upon others assuming what they might need. Secondly, it aims to cover all ability levels regardless of the individual’s disability. Following on from this, it assesses the strengths and limitations of a specific medical diagnosis. The fourth part prioritises the coordination of paperwork through key processes such as referral, assessment, care planning, monitoring and review.

Personalisation is the foundation principle and the framework of practice that places people at the centre of their care and support.

Four key elements inform the Personalisation approach:

Individual needs

Making your own decisions

Relationship-centred; and

What is important to you

Within each element of care, specific needs are identified. The Livewell Model can be used by anyone providing care for people with disabilities because it provides a fact based, principled, and flexible approach to supporting people, particularly those who are vulnerable.

DESIGNED FOR YOU

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The Livewell approach is for all people who require physical support for personal care needs.

Identify the right group of people to help advocate for your personal needs and aspirations. • If you are unable to understand issues relating to your own care needs, get advice from

people you trust and who understand your routines and the challenges you face on a daily basis. This not only applies to the physical difficulties you have, but also to any intellectual or emotional barriers you face.

• It is important to work out how to communicate with your advocate in a way that suits you.

FINDING THE RIGHT SUPPORT

Live the life you want.Based on best practice guidelines and the lived experience of people with a disability, here are a few things to keep in mind to get the most out of your support and live the life you want.

• Your services should be “person-centred” and provided in a way that you feel comfortable with, giving you the dignity and respect you deserve. -

• It’s important that your support workers take the time to interact with you directly and find out who you are as a person. Understanding what is important to you in every aspect of your life, both physically and mentally, will help them to ensure they are meeting your needs as effectively as possible.

• Along similar lines, attitude is an important consideration. For example, do they see you as an individual person, rather than just your disability? Are they mindful of your beliefs and values? Are they easy to be around?

Advocacy

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Choice

Ask questions to find the right care provider for you.Youngcare’s mission emphasises empowerment through independence, and we would encourage all people with a disability to adopt this principle.

• What support is needed to best meet your needs? You will need to be prepared to provide input into the ways in which support workers will be able to manage your personal care in both the safest, and the quickest way possible.

• When trailing a new support worker, it’s a good idea to prepare a list of questions about things that are important to you. For example; “Can you work flexible hours?” or “Tell me experiences that you have had with people who have similar disabilities as mine?”.

• If you live with other people, ensure that any potential support worker meets with the other residents of your home. To avoid confusion, talk to your neighbors about the times your support worker will be entering and leaving your home and the duties they will be required to complete.

• Set clear boundaries between yourself and your support worker, particularly when starting out a new relationship. You should draw a clear line between the tasks you can do yourself, and the tasks you would like a support worker to help you with.

• Circumstances can change very quickly, particularly when considering the care needs of a person with a disability. You might need to consider the need to be flexible with your care routines. For example, arrange a back-up carer and develop an emergency plan if you require urgent assistance.

Care

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It is important to have regular reviews with your support worker.

Discuss what is working well in your care routine, as well as areas that might need to be improved or changed. The feedback from your support worker will be just as important as yours. Having a family member or friend as part of the process will help bring fresh insights into the situation.

How person centred care is affected by the NDIS and what are the implications?The Supported Decision Making Framework has been developed to assist with a more inclusive approach to decision making. The principles of this framework are:

• Everybody has the right to make decisions that affect them

• Capacity to make decisions must be assumed

• Every effort should be made to assist people to make their own decisions

• Capacity is decision specific

• People have the right to learn from experience

THE NDISFor the first time in Australia, funding is directed directly to the person with a disability so you can choose the services you need.The NDIS puts YOU at the centre of the decision making process and is about how you want to live your life, your choice of supports, and who you would like to deliver the support you need.

Support must be ‘reasonable and necessary’ and also:

• Help you reach your goals and aspirations

• Develop your capacity to actively take part in the community

• Foster greater independence

• Increase your social and economic participation

• Represent value for money.

LIVED EXPERIENCECase study: working together to create the changes that you want in your life though a strength-based approach – building capacity and empowerment and addressing barriers that make it difficult.

Jess wanted to go on her first interstate holiday without her parents. It was understandably nerve wracking for everyone, but luckily Jess had a great team of support workers on board. They helped her plan out everything she needed to make the holiday go smoothly – from booking the train trip, to researching accessible restaurants and everything in between! Not only was the holiday itself a huge success, but everybody enjoyed the planning process. Jess gained so much confidence that she took another holiday only a few months later. Being able to travel has made life so much easier for her, both in terms of work and travel.

From the lived experience of people with disabilities, the positive impacts of decision making become clear.

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Questions to consider:

Do you feel supported to reach your goals and aspirations?

Do you feel supported to access and take part in your community?

Are you supported to be as independent as possible?

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How you will access the NDIS:

ACCESS THE NDIS

The supports and services the NDIS can fund fit under a criteria referred to as ‘reasonable and necessary’. These are things related to your disability that you need to live your life and increase your options, such as getting a job or doing more activities in the community.

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Create your first plan. You will meet with an NDIS representative to have a conversation about your current situation and supports.

They will ask you how you do everyday things like having a shower or cooking food. This information will form the basis of your First Plan. You will keep receiving your current supports until you have an NDIS plan in place.

The supports and services the NDIS can fund fit under a criteria referred to as ‘reasonable and necessary’. These are things related to your disability that you need to live your life, such as; getting a job or doing more activities in the community.

Your first plan will be in place for 12 months. This will give you time to think about how the supports are working for you, and what else you might need to help you achieve your goals before your next plan.

You can also ask for some extra support in your plan to get some training about how to manage your funding. If you want to manage your funding you should tell your Planner. Your Planner will give you a form with a heading that says ‘Request for Plan Management’. You may be told it is too risky to manage your own funding if you:

• Are at risk of being hurt in some way (your money, your feelings or your body)

• Are at risk of people taking advantage of you

• Are at risk of someone forcing you to do things

• You are unable to make decisions and manage money

• Had a court or tribunal to give decision powers to someone else

If you are told that managing your funding is too risky you can talk about how the risks can be made smaller. A Registered Plan Management Provider is an organisation or individual that the NDIS has said can do this kind of work. A plan management provider can help you as much or as little as you want.

They can help with things like:

• Finding support

• Paying people who support you

• Keeping notes of what has been paid.

The law says that the NDIA cannot ask you for money to look after your funding. If you want to use a Registered Plan Management Provider it will cost you money. To make sure you have money to cover the fee, make sure the fee is listed in your budget.

When assessing whether a service is right for you, it would be helpful to understand how your care and support will be coordinated. Having a dedicated person to manage this makes it easier to transfer vital information between your formal and informal supports, and ensure different roles and responsibilities are clearly set out. There are also various online and interactive systems of record-keeping.

MANAGING YOUR FUNDING

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Write down all the things your carers and support workers do to help you? (For example, bathing, transport, communication, emotional support).

QUESTIONS TO CONSIDER FOR YOUR PLANNING MEETING

Does the support you receive cause any extra stress for your carers or your family? (For example, with your health, emotional wellbeing or finances).

Is there anything you would change about the support you receive?

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Is there anything you want to do but you can’t because of restrictions you have on the level of support you receive? (For example, work, study, spending time with family members).

Is there anything you want to do but you can’t because of the support that is provided?

Can you think of anything that would help you continue to reach your goals?

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LAST WORDThis guide has described ways in which people with disabilities can find the information they require, as well as express their needs and wants. It is for this reason that the Livewell Model has formed the backbone of this report, as it focuses on person centered care. Youngcare believes that the beliefs and values of people with disabilities are the most important things to consider, because they should be able to dictate what support they require. This principle is the most important aspect of this guide.

The guide has also addressed many of the challenges that people with disabilities confront on a daily basis. In doing so, the guide has stressed the importance in placing the person with a disability at the centre of their care, and as the most important decision maker.

As the NDIS is being fully implemented this focus is even more important, as the processes for care and support continue to change. Therefore, Youngcare will continue to ensure that people with high care needs have the tools to remain as independent as possible in their daily lives.

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Carers New South Wales, 2015 ‘NDIS Checklist for Carers in NSW’. Available: http://www.carersnsw.org.au/Assets/Files/Fact%20sheet%204%20-%20NDIS%20checklist%20for%20carers%20in%20NSW%2017%20Feb%2015.pdf Accessed 11/05/17

Crozier, M., Muenchberger, H & Ehrlich, C. 2012. A Wellness Approach to a 24/7 Residential Model of care and support for young adults: A synthesis of the literature. Youngcare Griffith University Partnership.

Department of Human Services Victoria. 2012. Supported decision making guide Available: http://www.dhs.vic.gov.au/__data/assets/pdf_file/0011/690680/dsd_cis_supporting_decision_making_0212.pdf Accessed 28/05/17

Ellis, J. 2012. Working in Person Centered Ways: A resource book for NSW advocacy and information services. Ageing Disability and Home Care, Dept of Family and Community Services. NSW 2012.

Leith, K. H., Phillips, L., & Sample, P. L. 2004. Exploring the service needs and experiences of persons with TBI and their families: the South Carolina experience. Brain Injury, 18(12), 1191-1208. doi:10.1080/02699050410001719943 Mead, N., & Bower, P. 2000. ‘Patient-centredness: a conceptual framework and review of the empirical literature’. Social Science & Medicine, 51, 1087-1110. National Disability Insurance Agency, 2016, My NDIS Pathway. Available: https://www.ndis.gov.au/html/sites/default/files/My-NDIS%20-Pathway.pdf Accessed 28/05/17

National Disability Insurance Agency 2013 Good practice guidelines for person-centred care for person centered planning and goal setting for people with a psychosocial disability. Available: https://www.ndis.gov.au/html/sites/default/files/documents/Project_Report_Final.docx Accessed 28/05/17

New South Wales Government: My Choice Matters, 2014 ‘Things I Should Know #3: How Do I Manage Funding? October. Available: http://www.ideas.org.au/uploads/resources/671/NDIS%20How%20Do%20I%20Manage%20My%20Funding.pdf Accessed 11/05/17

Persson, D. I., & Ostwald, S. K. (2009). Younger residents in nursing homes. Journal of Gerontological Nursing, 35(10), 22.

Queensland Health 2011. How to Build Good Boundaries in Support Work. Available: https://www.health.qld.gov.au/__data/assets/pdf_file/0018/381060/boundaries_pro.pdf Accessed 28/06/17

Stewart, M. 2001. ‘Towards a global definition of patient centered care: The patient should be the judge of patient centered care.’ BMJ: British Medical Journal, 322(7284), 444.

Trettles, B., Bush, M., Simpson, G., & Gillet, L. (2005). ‘Accommodation in NSW for adults with high care needs after traumatic brain injury’. Sydney, NSW Brain Injury Rehabilitation Unit, Liverpool Health Service.

REFERENCES

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WHERE TO FROM

HERE?For further informationplease contact:

Youngcare Connect

1800 844 727youngcareconnect@youngcare.com.au

www.youngcare.com.au | 75 St Pauls Tce SPRING HILL QLD 4000