Phone A Mentor

In A Letter to my Younger Self, disability advocate, writer, speaker, and lover of fashion, craft, and polka dots, Stella Young wrote:

“The journey towards disability pride is long, and hard, and you have to practice every single day.”

In my personal journey towards acceptance, there is one thing I crave more than anything else: a significantly older person with Cerebral Palsy as a mentor. Hours and hours of hearing a warm warbling voice down the phone imparting the wisdom gathered from years of successfully navigating a world not designed for you.

I crave the “Back in my day” anecdotes, a signal for others to roll their eyes and tune out.

I crave the opportunity to meet with a person living with disability who has decided against working within big ideology advocacy, and instead just advocates through reaching ‘ordinary’ milestones of life which weren’t always thoughts to be possible for ‘people like them’.

I crave the experience of sitting in a staffroom talking over a pot of tea to a teacher who happens to have Cerebral Palsy; speaking at the park to a mother of three who happens to have Cerebral Palsy; or of waiting in my accountant’s office and see marks on the wall where paint should be, a comforting tell-tale sign of their newest recruit being wheelchair user with worse driving skills than me!

A snapshot of some key historical events indicates how far the disability rights movement has progressed:

The fight for disability rights first gained momentum in the late 1960s, following close behind the American Civil Rights Movement. In the 1970’s, the main disability organisation of the time Rehabilitation International allowed people with disability to attend their conference provided they did not speak for themselves, and instead had a family member speak on their behalf. Understandably, people with disability strongly denounced this ruling. This led to the establishment of Disabled Peoples International.

The United Nations then declared 1981 the International Year of Disabled Persons. This prompted a paradigm shift where disability and the associated discrimination began to thought of as a social issue rather than a personal affliction. Activists Paul Hunt and Vic Finkelsteinare credited with first writing about the transition from the medical model to the social model of disability. The Disability Services Act was established in 1986 with the Disability Discrimination Act established in 1992.

After endorsing the Convention on the Rights of People with Disability in 2007, Australia established the National Disability Strategy 2010-2020, which set out how the rights in the Convention would be enacted.

In 2013 the National Disability Insurance Scheme, Australia’s largest reform since Medicare, began its roll-out in Geelong. The scheme, scheduled to be fully established by 2019 promises a lifetime of support for people with disability. It promotes choice and control and empowers people with disability to be active participants of society.

These achievements are testament to the determination, strength and spirit of the tireless advocates who came before me. A byproduct of such a recent movement though is that meeting someone significantly older than me with Cerebral Palsy is extremely rare. Historically such people were made to live in institutions, segregated from their peers and defined by their disability. Put simply, they weren’t given the opportunity to experience the milestones and navigate the day-to-day tasks for which I so desperately crave advice.

Poet Maya Angelou once wrote:

“…in diversity there is beauty and there is strength.”

I couldn’t agree more. However, I can’t deny that sometimes I would give anything to pick up the phone, call a hotline and ask:

  • How did you explain Cerebral Palsy to a potential able-bodied partner?
  • How did you explain having to excuse yourself from work to organise a back-up when a support worker cancels?
  • How did you balance your desire for privacy as an adolescent with your need for personal care assistance?
  • How did you handle bladder issues?
  • How do you find affordable accessible accommodation?
  • How do you find employment not necessarily in the disability sector?
  • In the future I wish to be a mother; what support is there for people with disability to have children?

The common response I receive when I mention my hunger for Cerebral Palsy specific advice is:

“…if there is no-one before you, you need to be the trail-blazer.”

Thus far, I have shied away from calling myself an advocate, because all the people I have witnessed be effective advocates have a willingness to publicly challenge perceptions and confidently stand alone fighting against the current, showing resilience in the face of what can be hostile environments.

While I have a deep respect and gratitude for those who have used their voice to further the cause of equality for those with disability, and I know that I would not be able to live with the freedoms I do without their work, the few people I am aware of who are older than me work within system advocacy, focused on the bigger picture, rather than the nuances of the everyday. In the case of Cerebral Palsy, it may be that the condition is so varied in the way it affects people that this is no one size fits all answer, but any resource which contributes to disability awareness is a positive.

We hope that this blog, then, becomes a community hub – a space for the sharing of ideas, discussion, and advice for the day to day issues affecting the lives of our CSA partners.

And maybe – just maybe – the next generation of people seeking mentors can learn from and find comfort in the experiences of those of us who came before.

Nicole and her Support Workers

Registration and Accreditation Scheme for Disability Support Workers

T he Victorian Government has recently announced the establishment of a registration and accreditation scheme for disability support workers. The promotion of the scheme has focused merely on benefits with Martin Foley, Minister of Ageing, Disability and Housing saying ‘Making sure our disability workers are appropriately registered and qualified is an important step in giving Victorians with a disability the quality services and safety they deserve’. While on the surface, we strongly agree with the sentiment that people with disabilities deserve a quality standard of care, this scheme has the potential to threaten two of the key tenants of the National Disability Insurance Scheme, choice and control. It would require support workers meet a standard set by an independent regulator operating alongside the NDIS National Quality and Safeguarding Framework. The scheme was proposed following the horrifying findings by the May 2016 Inquiry into Abuse in Disability Services.

Promoting a high-quality workforce is to be commended. Indeed, Support Workers should be provided with training to meet specific needs and certainly the Government should assist people to become accredited if their employment situation deems it necessary. making accreditation a legal requirement for all workers contradicts the key tenants of the NDIS, that of choice, control and flexibility.

The hostility felt by some people with disability and service providers arises from the threat of this scheme preventing people from being able to choose who supports them. According to the Consultation Paper, roles of the scheme will include ‘setting enforceable qualifications for entry to practise’ and ‘accrediting education and training programs’. This suggests government officials with little experience of support workers will be charged with the responsibility of designing courses for support workers or deciding which programs meet the accredited standards.

Many support workers are university students, and while some may be working towards a career in the health field, many will not be undertaking specifically disability-related degrees. It is not practical to expect people to complete a qualification (which takes time and money) for what is, essentially a casual role to help them gain experience and extra income whilst studying.

Registration and accreditation does not automatically equal quality. Qualified carers may have a more formal mindset and knowledge gained from a textbook rather than an ability to adjust to the person with disability’s living circumstances. There is often a gap in the ‘client’/‘carer’ relationship, rather than an equal relationship.

Introducing mandatory qualifications assumes that all people with disability are unable to communicate their needs. It assumes ‘inability’ rather than ‘ability with a little support’. mandatory qualifications send a message that academics/trainers are more of an expert in how to support the person with disability than the person themselves.

Unfortunately, abuse is blind to the presence of a qualification. Instead, funding should be put towards having advocates assist people with disabilities who wish to employ their own carers, whose sole job it is to be the voice of people who can’t communicate for themselves.

Furthermore, at a time when we need to grow the disability sector, a registration and accreditation scheme would severely limit the pool from which to choose support workers. It could potentially damage a sector which already struggles to attract workers. It is essential people with disabilities can employ people whom we trust and feel comfortable. Ability to choose who assists you is key to quality of life and sense of self-determination.

From a financial perspective, having a qualification usually increases the wage of the worker and unfortunately many funding packages won’t stretch far enough to meet that income. Who is expected to foot this increase in cost?

Additionally, at its core, disability support is diverse. It involves helping peers live their best life, so qualifications for certain tasks may be too difficult to police increasing its potential  to be ignored.  The Government must allow us to continue to decide for ourselves who supports us by not imposing mandatory qualifications for disability support workers.

To have your say regarding what a framework for mandatory support worker registration should look like sign the petition.

Action for Choice and Control