Creating a Person-centred Approach to Recognise Abilities, Not Disabilities

The Centre for Cerebral Palsy

Australia has come a long way in building a society that promotes the social inclusion of people with disability. In the last 30 years, we have moved further and further away from the antiquated model of care that focussed on institutionalisation to one that offers self-directed services, encouraging greater community engagement and inclusion.

Current political, economic and social reforms have given some of the most marginalised people in Australia the opportunity to participate in every facet of society. This landscape is vastly different from the environment that The Centre for Cerebral Palsy (The Centre) faced when it was established in 1951.

Founded by parents of children with cerebral palsy, The Centre today is one of the largest and longest established specialist cerebral palsy service providers in Western Australia. Operating as a charity, The Centre employs over 700 staff and provides services and support to more than 1700 people from its Sir David Brand Centre and over 30 other locations.

Back in the 1950s, however, The Centre was staffed with only one medical consultant and three therapists. A grand total of 25 children were accepted for treatment. Judy Hogben, CEO of The Centre, says that in the early years, services provided were very much based on the accepted medical model of the time. Unfortunately, that inadvertently resulted in a lack of recognition of the abilities, capabilities and contributions of people with disability. She is, however, optimistic and excited about the future because things have radically changed since then.

“The greatest changes in 60 years have been to the community’s perception of and value placed on people with disability and to the perceptions and aspirations that people with disability and their families have of themselves,” Judy explains.

Over the years, the models of service delivered have transitioned to reflect the positive values of normality in social roles attributed to people with disability and embraced by both the sector and the world since the 1970s. From its humble beginnings, The Centre today has developed both its range and its quantity of services provided. It is now a multi-disciplinary, multi-service organisation that takes on a person-centred approach in order to deliver as much independence, choice and flexibility to individuals as possible. Its aim is to empower service users so that they can express exactly what they want and need from the organisation.

“It is a remarkably good shift,” says Judy, “we’ve been very lucky in Western Australia to have bipartisan agreements between governments and they have responded to the changing needs and perceptions of people with disabilities by providing legislated service and access standards and by providing funding growth.”

And the changes will continue on a national level, with a National Disability Insurance Scheme (NDIS) expected to be finalised this year. The scheme has been hailed as a positive for people with disability as it will change the way disability services are provided. Rather than funding based on historical budget allocations, a funding pool will be based on actuarial assessment of need. Taking on a lifelong approach to providing care and support, the assessment will look beyond the immediate need and across the course of a person’s life. This is significant because taking a lifelong approach means focusing on intensive early intervention. More importantly, an NDIS is pro-choice and will put people in control of the care and support they receive, based on need.

While this shift is largely positive, it is also a profound and challenging one for the sector. It is, after all, far easier to offer what is already available than to tailor an affordable, quality service around the expressed needs and aspirations of each individual.

That said, The Centre is not about to take the easier route. Judy is committed to supporting her staff through this change. “We provide a lot of support to our staff for this culture change and tell them that to actually enable the best design of services, they will need to listen, and support, and not just get in there and do it themselves. In some ways, it’s asking people to resist the natural urge to support, assist and control, instead giving up a lot of the power to the individual, believing that this will actually better enable people to meet their own aspirations. This will be the best outcome for all individuals.”

The Centre provides extensive training to help its staff understand the new service model and continue to brainstorm various ways to better meet its service users’ needs. It also utilises its strong governance framework and practices, strategic and detailed planning coupled with identification and management of service and financial risk to ensure that The Centre will remain viable.

While Judy and her team are dedicated to helping service users live independently and freely, a lot of the time it is the physical environment, not society that discriminates against people with disability. Inaccessible bathrooms, staircases and poorly designed public spaces are just some of the ways in which the environment restricts people with disability from living full and independent lives. This restrictive environment is exactly what The Centre’s Cassia House is moving away from.

Built in the 1980s as a hostel-style accommodation, Cassia House was never intended to become a permanent home for adults with disabilities. Its long and narrow hallways, small bedrooms and unwelcoming communal areas made the facility incredibly impersonal and despite the efforts of staff and families to brighten and enliven the communal areas, those who lived there found the physical environment unbearable. Something had to be done and after years of hard work and planning, building a home – one that the residents can be proud of, is now becoming a reality.

2013 will be a monumental year for The Centre as it will demolish the old Cassia House to make way for a modern lifestyle village. Demolition has commenced and the Disability Services Commission as well as Lotterywest and major donors have committed to providing significant financial support toward the redevelopment. The Centre is also contributing financial and in-kind resources and while there is currently a shortfall in funding, it is hoped that this will be met through a fundraising campaign.

Five purpose built villas that will comprise Cassia Lifestyle Village will take the place of Cassia House, enabling previous residents to move into more appropriate and modern accommodation. A new Family Service Centre will also be established to give families and individuals easy access to equipment and therapy rooms.

Individuals will live in modern, technology-enabled villas and be able to exercise choice and control over their personal space and in their routines,” says Judy.

Once the village is ready, people will return to private bedrooms, bathrooms and courtyards as well as communal gardens and living spaces that will enable social participation. They will have access to their own kitchen and will be able to prepare or assist in the preparation of their own meals. Customised assistive technology and equipment that support communication and mobility will also play a large part in transforming their daily lives.

Customised Products (CP) Tech, which is part of The Centre, will provide this assistive technology. It will play a major role in the redevelopment through the fabrication of specialised equipment and new and emerging technology options. CP Tech is truly a leader in its field and to fully maximise its capabilities, The Centre will also be refurbishing and expanding CP Tech’s quarters, which it has long since outgrown.

Completion is anticipated for December 2013, thus Christmas this year will be an exceptionally special time for one and all at The Centre as both the team and service users will be returning to their new home for the first time, spending the holidays together in their brand new lifestyle village. This will be a wonderful Christmas present for everyone including Judy. “I am really looking forward to seeing people’s faces!” she says. “The joy and the excitement of being in their own home for the first time… it will be an absolutely magical moment.”

It’s these magical moments that make The Centre’s sweat and toil worth it and more such moments are expected this year. A few months ago, The Centre acquired its first Wizzybug, a revolutionary mobility device for very young children with cerebral palsy.

We often take the simplest things, like playing chasey or going on walks with our children, for granted. They are, after all, part and parcel of daily life. Sadly, for young children with cerebral palsy, these “simple” activities are arduous and sometimes impossible tasks. Until the recent invention of the Wizzybug and other similar devices, there was no age appropriate or aesthetically positive first mobility device for younger children. Often, children with cerebral palsy could only sit passively in a pram or stroller.

Taking on parent and clinician feedback, the Bath Institute of Medical Engineering in the UK developed the Wizzybug, a safe and approachable device that uses existing technology found in adult wheelchairs. However, unlike these clinical and sometimes intimidating pieces of equipment, the Wizzybug has a cute appearance – it looks like a smiling ladybug! The Wizzybug has a range of controls, can operate at lower speeds and has adjustable settings to accommodate the child’s growth. Suitable for children with high or low needs, the Wizzybug helps users come back onto a developmental continuum of mobility that they may not have had before.

This is precisely why the Wizzybug is such an important invention, says Scott Langmead, CP Tech Programme’s Senior Occupational Therapist. “Self-initiated mobility has been identified in the research as an essential activity to facilitate development in a child’s early years, including social, emotional and educational development, and they will have the energy that they’re not using for mobility to use for learning.”

There has been a significant level of interest in Australia and this is not surprising. Children who have trialled the Wizzybug have become more spontaneous in their communication and interaction with their families. Perhaps the most important benefit is that the Wizzybug helps kids be kids by giving them the mobility required to play and have fun.

Having worked with a number of Wizzybug users, Scott shares the joy that these children and their families experience after using the device. “One of the girls that I work with was able to play hide-and-seek with her grandparents for the very first time. Another boy got to follow and chase his siblings. This increases their motivation for mobility in general. So the Wizzybug is an excellent and safe child’s first mobility device because they can experiment, learn and develop their skills and ultimately, just play, which is the main activity of young children.”

The Wizzybug can be used in conjunction with other devices already present in a child’s life. Thus, it is not an all or nothing approach and the child does not have to be in the Wizzybug all day, every day. Instead, Scott advises parents to look at the Wizzybug as a part of a child’s early mobility journey. The Wizzybug is now available in Western Australia through The Centre, and to help parents make the most informed decision, The Centre will be offering a short term loan pool of devices, giving families an opportunity to trial a Wizzybug before making a decision.

With all these exciting developments underway, it is absolutely vital that The Centre communicates its improvements, progress and changes to its ever expanding community in a clear and timely manner. After all, working closely with families and individuals will better enable the shift in power structure and help The Centre streamline its services. While The Centre communicates through a number of channels, Public Relations and Communications Coordinator Amy Brett is focussing her efforts on the website. This is the first tier of a multi-tiered project to boost engagement with the organisation online.

“The Centre is currently redeveloping its website to make it more interactive, easily navigable and user friendly. It will also embrace new technologies and features. The website will represent an online hub at which families, individuals, professionals and other sector members can seek, share and engage in knowledge, information and experience.”

Given its solid reputation and strong presence in Western Australia, The Centre has also been able to assist service users to participate more fully in their local communities so that they can benefit from the experiences, social aspects and relationships that come with community engagement.

It is evident that The Centre is undertaking considerable work to encourage social inclusion and engage with individuals to find out what they need and want from The Centre. To successfully become a genuine person-centred organisation, where choice is very much a part of service users’ lives, the organisation will continue to listen to its service users and their families. It will also support individuals in community settings outside of The Centre’s physical buildings and integrate its person-centred approach into its recreation, accommodation and therapy services.

Striving to remain at the forefront of service provision in Western Australia, The Centre will never stop improving its services and encouraging social inclusion. Doing so may not be easy; in fact, the move toward more flexible and individualised service options is time consuming and resource intensive. It requires the fullest commitment from the organisation’s executive, management and staff.

But for organisations who share the same goals and ideals as The Centre, “have courage and do your best,” reassures Judy, because “there is no one ‘right way forward,’ no one blueprint. However, organisations can better prepare for the change that we face if we are more open to sharing our experiences so that we can learn from each other and deliver better outcomes. After all, delivering better outcomes for people with disabilities, their families and carers is what it is all about.”

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April 27, 2018, 9:05 AM AEST

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