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How Therapy Focus works with young people and their families in Western Australia to co-design therapeutic interventions

Introduction

This case study explains the co-production journey of Therapy Focus from an outsourced government programme with a professional-led service model to a not-for-profit community service working with young people and their families in Western Australia to co-design therapeutic interventions.

Today Therapy Focus is one of Australia’s leading professional therapy providers, delivering services to over 3,500 clients per year.  It employs nearly 300 staff, of which 80% are clinically trained therapists (Occupational Therapists, Speech Pathologists, Physiotherapists, Social Workers, Psychologists and Dieticians). 

The co-production journey of Therapy Focus has to be seen within the context of a social policy reform in Australia, which is centred on the personalisation of social care and empowering people with disabilities.  Clinical practice is changing, with practitioners increasingly respecting the role of the person with a disability in decision-making, as well as that of the family and carers supporting that person.  The A/B model is quickly changing to an A+B model.  This, combined with the advent of a National Disability Insurance Scheme (NDIS) and its individualised funding underpinnings, is heralding a new era of co-design in Australia.

Therapy Focus is well on the journey to change the culture of its workforce and to respond positively to the confluence of energies described above.  From changes to organisational structure and governance, to changes to clinical practice, the client is increasingly being seen as central to a sustained business in human services.

Objectives

Therapy Focus has been predominantly funded by the WA State Government to deliver therapeutic interventions for school aged children with disabilities, although in recent years this has broadened to all age cohorts.

For many years Therapy Focus was able to work in blissful ignorance of the wider market place, as a default provider appointed by government.  The main challenge was recruiting and retaining professional allied health staff to deliver all therapy services to all children with a disability from a fixed and limited budget.  There were antagonists in schools and in the community sector, but for the large part people were thankful that services were available.

However, as years went on, competition arrived.  The government was forced to consider alternative providers and ensure a marketplace was available.  Although this initially gave rise to a closed market of similar not-for-profit providers, the market has grown and matured significantly since the original outsourcing of Therapy Focus in 1998.

The evidence based practice at the time was based on a “learning everywhere” model.  This was premised on the therapist conducting interventions in the child’s natural environment – where the techniques could be reaffirmed by carers and family members at all times, and not just when the therapist was present.  It was also premised on a model of transference of skills from the “expert” therapist to the “lay person” carer. The child with the disability was at the centre of the care, but not necessarily at the centre of the decision-making.

However, by 2015 the funding model of Therapy Focus started to change in line with the broader “consumer choice and control” reform of the Commonwealth Government, that has underpinned the new National Disability Insurance Scheme (NDIS).  This will see funding transition from State block funding for programmes to Federal funding for individualised services.

As a result of these wider policy reforms, Therapy Focus has to change its corporate objectives.  Therapy Focus has focussed its purpose very intentionally on its key beneficiary: Enabling people living with a disability to optimise their quality of life.  Consistent with the principles underpinning the NDIS, our key areas of focus are:

  1. You: Together we strive to understand your needs, strengthen relationships and advocate for people living with disability
  2. Our service: Together we strive to understand our business and operate efficiently
  3. The future: Together we strive to understand future needs and evolve our services to grow as people grow.

Broadly these can be mapped to the strategic objectives as follows:

  1. Maintaining and increasing share of the community therapy market
  2. Building financial strength and sustainability
  3. Growth under the NDIS

Whilst this mapping represents a somewhat crude admission that underlying the benevolent intent there is a commercial reality, the mapping also shows that benevolence and commerce are not incongruent and that co-production and the involvement of people in decision-making is good for business.

Change Management

In recognition of the emphasis the reform was placing on service users and their network being at the centre of their care, Therapy Focus responded in a multilateral manner.  The governance of the organisation was largely skills-based, reflecting the political imperative of a well governed community-based organisation when outsourced in 1998.  By changing from an association structure to a company structure, and endeavouring to have two people with a lived experience of disabilities on the Board of Governance, the organisation started hearing the voice of ‘people with lived experience’ where decisions had the greatest impact.

To support the CEO, a Parent Reference Group (PRG) was established.  The PRG consists of eight to 10 parents of children with disabilities who advise the CEO on policy reform and clinical practice.  They are more than “reality checkers” and have often introduced innovative changes to the management. 

Below is a short list of successful initiatives brought about by the PRG:

  • Client Service Charter
  • Waitlist Strategy
  • People’s Choice Award

The PRG has also proven invaluable in guiding the organisation’s communications, including its social media strategy, as well as its community events. 

The ongoing service input by PRG members is important, too.  Following a series of exchanges with a partner agency, Autism NZ, we gained insights into a parent-led organisation and service excellence, using peer-to-peer models.  Advice on peer-to-peer service options is now a key element of the Therapy Focus Strategic Plan 2017-20 to co-design services that people need and want.  Given that one objective of this reform is to transform passive consumers into economically empowered customers, it is essential for Therapy Focus to have a strong communication link with our clients.

The thinking

The Governance International model of co-production has been valuable to extend our thinking.  It verifies that we are on a good path with co-design, but also starts to guide us towards the broader citizen empowerment principles of co-commissioning, co-delivering and co-assessment. 

In adopting an individualised model of funding for disability services, the NDIS seeks to adopt person-centred planning and support.  The funding is based on a holistic plan that supports a person with a disability to assist them with all aspects of daily living and to support their independence as much as possible, as well as enabling them through a wide range of appropriate services.  Therefore commissioning of services and supports is very much a shared journey, with government, service providers and other carers and support and advocate agencies working with a person with a disability to optimise a plan for these purposes.

At Therapy Focus we have evolved our service delivery model to ensure co-design with service users and their social network is paramount.  The below excerpt from the Therapy Focus website shows the service cycle:

The Service Cycle

Our service cycle outlines the steps in service delivery from the initial welcome meeting to regular progress reviews.

Welcome meeting

Your Therapy Team will meet with you and the people who are important to you to discuss what you want in life. We will explore your priority areas, goals and dreams.

Assessment

Your therapy team will conduct an assessment to find out what you can do and what you need help with. They do this by:

  • Asking you questions
  • Talking to the people who help you
  • Watching you complete activities at home, school, work, or in the community
  • Asking you to demonstrate activities

Therapy plan development

Your therapy team will talk to you about their assessment and suggest what you can do to work toward your goals. This will include things you can do and things people around you can do to help. This will form your Therapy Plan.

Therapy

Once your Therapy Plan is complete your team will begin providing therapy. This can include:

  • Helping the people around you make things easier for you
  • Giving you activities to help you learn something new
  • Showing you how to do something
  • Finding you equipment that can help you

Practice

You will need time to practice new skills with help from your therapy team and the people around you. This is when you can tell us what is working well and what isn’t working so well.

Progress review

When you feel you’ve had enough time to practice we will meet with you to find out if you’ve reached your goals. If you have new goals then we can continue to help you.

Co-design is the essence of the service cycle.  It aims to ensure the experience and aspirations of a person living with a disability is at the centre of our efforts – from start to finish.  In care terms we say:

“Your experience: We listen to you, learn your story and appoint you the leader of our team”

The plan is then implemented by service providers, whether they be registered entities like Therapy Focus, or informal supports like parents or neighbours.

To understand how this looks in reality, consider Zathiyah’s story:


Specialist support crosses the sea

Therapy Focus clinicians are crossing oceans to provide specialist support to children like 7 year-old Zathiyah Elman, who is affected by a rare genetic disorder that has left her with complex disabilities.

Zathiyah and her family live in the Cocos Islands and first came to Perth when Zathiyah presented with symptoms of the disorder at 2-years old. Her mother, Zaina said her daughter was a regular toddler until a recessive gene held by both parents began to wreak havoc.

“Zathiyah was having lots of trouble breathing and the hospital on the island couldn’t provide her with the treatment she needed. We were rushed to Perth and Zathiyah was diagnosed with pyruvate dehydrogenase deficiency,” said Zaina.

“She was successfully treated in Perth and began to walk and talk again, but then relapsed a year later. The condition has left Zathiyah with poor muscle tone, which makes her wheelchair dependant, as well as neurological problems that affect her ability to speak.”

Therapy Focus Occupational Therapist Sharon Hedley met Zathiyah and her family while delivering services on the Cocos Islands as part of an agreement between Therapy Focus and the Indian Oceans Territories Health Service.

“Zathiyah’s therapy on the Cocos Islands has been sporadic, and I knew she could benefit from the specialist services that our Advanced Occupational Therapist, John Lees can provide,” said Sharon.

“Zathiyah and her family travel to Perth every 4 months for Botox treatments to relax her muscles, so we lined up an appointment with John to complete a full assessment and identify what additional support we can provide.”

John is now working with Sharon, Zathiyah and her parents to build a complete picture of her complex condition, and devise a therapy program that can be implemented in Perth as well as on the Cocos Islands.

“In our initial appointment we spoke to the family about Zathiyah’s home situation and lifestyle, capturing the family’s goals, concerns and priorities. For example, the roads in the Cocos Islands are paved with large pavers, making it very rough and bumpy. We will need to minimise this impact through selecting a wheelchair with wheels and tyres suited to rough terrain.”

“After this we conducted a physical assessment to look at Zathiyah’s current seating system and postural requirements. This helps us start the process of developing a therapy plan that will maximise Zathiyah’s functional ability, minimise the energy she needs to maintain her position, and protect her body systems from potential damage as a result of poor posture.”

Prior to taking up his position with Therapy Focus, John was the Clinical Lead Occupational Therapist with the Central London Specialist Wheelchair Service, giving him extensive experience in working with children with complex disabilities.

“I’ve worked with a number of children and adults with complex disabilities, which have resulted from congenital conditions. These people usually require highly customised seating and positioning solutions, so the most important part of my role is to complete thorough assessments to identify appropriate recommendations.”

With Zaythia now back home, Sharon and John are preparing a report with their findings and recommendations for Sharon to discuss with Zathiyah’s family when she returns to the Cocos Islands in September.

“From here I will be supporting the family to trial some additional postural supports such as alternative seating, a shower seat and potentially a new wheelchair. I will also review the home environment as well as Zathiyah’s bed position and sleep supports,” Sharon said.

“We expect that with access to these specialist supports and equipment, Zathiyah’s muscles will be supported to the point that she will be able to avoid deformity and live much more comfortably on a day-to-day basis.”

For more information about the services and supports Therapy Focus offers people living with disability, visit the How we can help page.


Risks and obstacles

Working with people with disabilities and empowering them through the professional relationship of client to one where they are exercising control over economic decisions (e.g. purchasing) is the aim of the NDIS reforms.  The outcomes of the early interventions should ultimately empower a population of people living with disabilities to gain and maintain their independence through appropriate services and supports, to enable them to contribute to society with full citizen rights.

The effect of empowering some people may be disempowering other people.  This is not necessarily the intention of the NDIS, but most would acknowledge a shift in power is necessary - a shift from paternalistic attitudes to respectful attitudes and a shift from unilateral actions to inclusive actions.  We call this a shift from ‘A/B mentality’ to ‘A+B mentality’.  In other words, a shift in power from governments and service providers to people living with disabilities.

This shift can be confronting for some.  It signals a change in practice and for some even a shift in approach and a perceived challenge to evidence based practice.  It would be fair to say our initial experience in the NDIS trials has led to both service users and practitioners experiencing some confusion and even confrontation.  Even the idea of more choice and control can be overwhelming for some who have not previously had it or even wanted it.

Managing the transfer of control going forward will be a challenge.  Whilst client satisfaction is very high, our most recent client surveys show people living with disabilities want to see change.  Therapy Focus conducts a Net Promoter Score (NPS) process which involves an independent party emailing service users within one month of their last service and asking some short questions directly related to their satisfaction with outcomes and propensity to recommend the service to a friend or colleague. Advocates are defined as people who rate 8, 9 and 10 (out of 10) and detractors as people who rate the services 3 or below, while those in-between are seen as 'passive'. The NPS score can lie between -100 and +100, so that an NPS score higher than zero is felt to be good, and +50 is excellent. Therapy Focus has averaged a score of +43.

In addition to the NPS process, Therapy Focus has engaged an independent party to conduct a detailed biennial survey. Of the families surveyed in 2016, 85% believed that Therapy Focus is achieving expected outcomes. The 2016 survey also revealed that 20% of families want to see more contact between their child and the therapist, and, of those families whose expectations are not being met, 32% are seeking more sessions with the therapist. Both face-to-face contact between client and therapist as well as centre-based or home-based practice are looming as major challenges to the “learning everywhere” model of practice.  Our thinking therefore needs to change to embrace the changing expectations and attitudes that come with such an ambitious reform as the NDIS.  They need to change to put the child, and indeed the person, living with a disability at the centre of decision making.

Changes are being made in governance, with service users involved in the Parent Reference Group, which in turn nominates a member to the Board of Directors. Changes are also being made in the service offering. All new infrastructure is being fitted out with clinic rooms. This enables centre-based care options for those service users who wish to access that type of service, or for those service users who prefer to absorb travel costs themselves, rather than spend their NDIS funding allocation on having therapists travel to them at a relatively high therapy hourly rate.  Cultural changes in service style will take time to manifest, but therapists and support staff have undertaken extensive training in consumer-directed care and in customer service.  Already their practice is changing.  An example would be the recording of clinical notes during the therapy session, with decisions (e.g. follow-up actions) communicated and agreed during the face-to-face contact.

Outcomes

Moving from a programme-funded environment, where success was measured in outputs, to an individualised model of funding underpinned by actuarial modelling and insurance principles, it will be essential that we can verify outcomes.  This will be particularly relevant in a world where the actuary has directed efforts to invest in early interventions to offset further costs in a lifecycle.  To verify outcomes we must involve the person who is subject of the intervention.  We must do away with paternal assumptions and actually ask questions and seek verification.  In other words, we must use a co-assessment model to achieve this.

Responding to the NDIS social reform will take years.  The journey of people living with disabilities, from an institutional past with incarceration undertones, to an individualised future with a promise of empowerment and independent wellness, has already taken decades.  Nobody is offering false promise or quick fixes.

Performance indicators

Therapy Focus is offering a genuine partnership approach to:

  • Co-commissioning appropriate services and supports
  • Co-designing them as appropriate to a person’s lifestyle
  • Co-delivering them in accordance with the capacity of the individual to benefit from them; and
  • Co-assessment of the outcomes that are achieved by them.

This offer is being taken up by people living with disabilities at an astonishing rate. 

Growth in Therapy Focus services in 2015-16 from the year prior saw 31% more clients receiving 59% more hours of service by 36% more staff members. 

Of the 3,587 clients who received services, 89% reported Therapy Focus was delivering the expected quality of support and 85% believed Therapy Focus was achieving the outcomes they expected. 

Staff satisfaction also remains high on a number of metrics, the most telling being attrition which has reduced from a high of 38% in 2011-12 to a consistent 12% in 2016-17.

Costs and savings

Predictions indicate organisations like Therapy Focus will need to increase service capacity, and thereby staffing, by 30% per annum for the next five years, just to meet the additional demand from the investments governments are making.

It is early days and the evidence is just starting to be collected for the benefits of co-design in the NDIS.  However clinical practice has been changing for years, with the ‘learning everywhere’ model recognising the shortfalls of the expert-subservient model and the benefits of a co-design model in clinical care.

Once the actuaries can quantify the savings from early interventions, and the effectiveness of co-design in implementing the interventions, the momentum will build to quantify the benefits and benchmark co-design as best practice in the scheme.  It certainly makes intuitive sense in a service environment which is based on individualised funding, where service users are encouraged to exercise choice and control over services and supports they access.

From a service provider perspective, we will be interested in monitoring our own cost drivers and looking for savings from increased co-design.  It is already apparent that travel is in everyone’s spotlight and a will exists to rationalise this expense by making best use of home based care, centre based care, and intermediary based care (e.g. at schools or community centres).  Other examples may be use of interpreters for culturally and linguistically diverse service users, or use of electronic self-monitoring applications.  No doubt the NDIS will mature in Australia and both service users and providers will be looking to maximise efficiencies both separately, and together.

Learning points and next steps

The achievements to date bode well for service providers that are capable of delivering scalable, quality services in an efficient manner.   But it bodes even better for providers who have established meaningful consumer engagement practices and have formalised models of co-commission, co-design, co-delivery and co-assessment.  Therapy Focus is well on the way, but has much more to do.  The more stakeholders see the journey and acknowledge the results, the more they are demanding increased engagement. 

Australia will see the NDIS rolled out gradually, with full participation not expected until at least 2020.  It may be even later in Western Australia, with the State Government at odds with the Federal Government over the model and the cost.  The phased rollout has already been challenging, but the worst is yet to come.

Author’s Note

As the CEO of the company who has authored this case study, I can attest that staff want to see more effort by management in the involvement of service users in the way the company is run, and especially in the co-assessment of their needs.  Our clients want to see ongoing effort in the co-design and co-delivery of services, with a focus on involving the person living with a disability in decision-making.  And our staff again want to know that their efforts have actually made a difference; that real-life outcomes have been achieved for people living with disabilities.  By focusing on these and showing continuous improvement in each of them, we will be well positioned to influence and progress this NDIS reform – the biggest social reform in Australia since the inception of universal healthcare via the Medicare reform of the early 1980’s.  This is more than blissful ignorance, it is performance that empowers!

Further information

For more information about Therapy Focus go to www.therapyfocus.org.au
For more information about the NDIS go to www.ndis.gov.au

About this case study
Main Contact

Matt Burrows
Chief Executive Officer
matt.burrows
@therapyfocus.org.au

This case study was written by Matt Burrows, CEO of Therapy Focus, in August 2017.

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