Post by Annie Ernst, DAS Advocate
Parkinson’s Support Group Meeting
Date: Thursday 31/01/2019
Time: 6:00pm – 8:00pm
Location: Boardroom at the Gillen Club (located on Milner Road)
Post by Annie Ernst, DAS Advocate
Parkinson’s Support Group Meeting
Date: Thursday 31/01/2019
Time: 6:00pm – 8:00pm
Location: Boardroom at the Gillen Club (located on Milner Road)
We are exploring opportunities for people to volunteer with Disability Advocacy Service! If you are interested in volunteering with DAS, please let us know – stop by the DAS office, phone 08 8953 1422, or email CEO Terry Thommeny at [email protected]
Australia Day Flag Raising and Citizenship Ceremony is taking place on Saturday, 26 January 2019 at the Council Lawns on Todd Street, Alice Springs. The Smoking ceremony and Welcome to Country commence at 7:00am, followed by the Flag raising ceremony at 7:30am. Celebrations for Australia Day include the presentations of the 2019 Australia Day Ambassador for Alice Springs, winners of the “Australia Day” 3.5km Family Fun Run/Walk, and the Australia Day Awards, as well as cutting of the Australia Day cake, and a free community sausage sizzle!
For more information, please visit the event page on the Alice Springs Town Council website: http://www.alicesprings.nt.gov.au/events/2019-01-26/australia-day-flag-raising-and-citizenship-ceremony
“Breaking the silence around sexual assault”
I would like to go back to one of the original statements I made when this forum began and that was disability issues are not confined to people in wheelchairs or using obvious aids. Defining disability is best left to people who identify as a person with a disability because they are the experts in their own lives, they know what affect it has on their day to day living.
It is also not confined to physical aspects and ability, there are people (and their family and friends) coping with intellectual disabilities as well as a wide range of mental health issues.
For every person with an obvious disability there is are greater number of people whose disability is invisible to others. If you wonder how that person who parks in a disability park can do so when they confidently step out of their vehicle then consider you may be judging too quickly.
Whatever people are able to deal with and in some circumstances need care from others for there is an aspect of having a disability that makes people more vulnerable to the anti-social behaviours of others in community. There are well documented examples of people being taken advantage of because of an inability to fight back or run away.
As advocates we have a responsibility to ensure that we engage in systemic advocacy that raises awareness of the physical, emotional and intellectual needs for access and accountability. It is talking and interacting with those in a position to either influence or make change for those more at risk than others.
Therefore, it is important to remember that vulnerability puts people with a disability just as much, if not more at risk of becoming victims of crime and violence.
I asked Christa from SARC if she would like to contribute some thoughts on the effects of sexual assaults as this is where people with disabilities are especially vulnerable.
In my experience, it is also an area where people are reluctant to report or be able to acknowledge what has happened. Often it can take years to be able to speak about it even to a trusted friend or family member.
Sexual Assault Referral Centre (SARC)
More and more people are standing up and saying ‘No” to sexual violence. Sexual violence can take different forms and often can have long lasting impact on people.
Sexual violence is not talked about because most people feel shame, blame themselves or think it is their fault – however, it never is.
Sexual violence is happening all over the world. It creates a climate of fear, sadness, anger and mistrust. To stop sexual violence some things must change – need to stop blaming victims, need to recognise warning signs and support people to keep safe and protected.
The Sexual Assault Referral Centre in Alice Springs can help with gathering medical evidence, provide counselling, access to Traditional Healers and generally support children and adults. SARC staff can help to find strong and positive ways to manage the impact of sexual violence.
If people are worried about being safe, talk to the police, your Disability Support Worker and/or the Sexual Assault Referral Centre. Ph. 89554500 24 hrs
Please contact DAS for any information about disability supports and services on 89531422 or email [email protected]
Link to information about SARC on the NT Government website – https://nt.gov.au/wellbeing/hospitals-health-services/sexual-assault-referral-centres
Currently there are not many supports for people with Parkinson’s Disease in Alice Springs, and even fewer in remote communities in Central Australia.
Parkinson’s disease is a chronic progressive neurological disorder that most noticeably affects movement. People with Parkinson’s may have tremors or shaking, move slowly, have rigid muscles, or have trouble walking. These are some of the more common motor symptoms although there are others such as freezing (when your feet feel glued to the floor or you find yourself unable to initiate movement), slumped posture, balance problems and loss of facial expressions.
Non-motor symptoms which can occur include sleep difficulties, softer voice, swallowing difficulties, reduced sense of smell, bowel and bladder changes, cognitive changes, anxiety and depression.
Parkinson’s is a very individual disease and each person who has Parkinson’s will experience different symptoms to varying degrees, and affecting different parts of their body. For example, one family member with Parkinson’s could experience a tremor in their right hand, but few other movement symptoms, while another may experience symptoms such as tremors, muscle rigidity and difficulty walking. Parkinson’s is very different for each person and so is the progress of the disease.
Although Parkinson’s is commonly thought of as a disease that affects older people, it can affect people of any age. Actor Michael J Fox was diagnosed with Parkinson’s at the age of 29. Young people with Parkinson’s will often have additional considerations to those who are diagnosed later in life, such as how the disease affects their careers or parenting. Navigating issues such as how to maintain your livelihood and independence are frustrating at any age, but are acute for younger people with Parkinson’s. For people young and old, it can be lonely – and sometimes scary.
If you are someone with Parkinson’s, you have probably gone through many emotions both before and after diagnosis – from grief and anger, to relief at having a diagnosis, and concern about what this means. Although the disease is experienced differently, it can help to talk to other people who have a diagnosis of Parkinson’s are facing similar challenges and uncertainties.
Currently there isn’t a Parkinson’s Disease Support Group in Alice Springs although there are many of us in town and in communities throughout Central Australia who have Parkinson’s. Support groups can provide reassurance that you’re not alone and give you a safe and supportive environment to share your feelings, learn from and help others, and gain coping strategies to enhance your quality of life.
If you or someone you know and care about has Parkinson’s, or if you’re a health professional with an interest in Parkinson’s Disease, please come along to an initial meeting to gauge interest in setting up a Parkinson’s Support Group at the Disability Advocacy Service (DAS) at 4/54 Reg Harris Lane, Alice Springs at 5pm on Thursday 22 November. For further information, or to let us know that you’re coming along, please telephone 8953 1422.
The 2018 Alice Springs Mayoral Awards are now open, until 5pm on Wednesday 15 November 2018. Presentations will take place on 3 December, to coincide with the International Day of Persons with Disability (IDPwD). People with and without disability are encouraged to nominate.
IDPwD is a day to promote understanding and support for rights, well-being and dignity for all persons with disability. The importance of embedding universal access across every aspect of political, social, economic and cultural life is a key focus of IDPwD and submissions that nominate people who support this aim are particularly encouraged.
1. The Noteworthy Award, for ‘A person with disability who has made a noteworthy contribution to the community’.
2. The Champion Award, for ‘A person with or without disability who has been an advocate for the rights and well-being of people with disability’
Additionally, the Michele Castagna Medal, will be awarded to one applicant across the two categories. The award is to recognise an individual that displays tenacity of service to people with disability.
Michele Castagna OAM was a highly respected leader and tireless advocate for people with disability. She was integral to establishing the Mayoral Awards and a determined advocate on Council’s Access Advisory Committee for 20 years. For many years, she also served at different times on the board of the Disability Advocacy Service (DAS) and also spent time as the Manager of DAS. The Michele Castagna Medal was created in her honour after her passing in 2016.
The Mayoral Awards recognise people in our community who work hard to make a difference. This should be demonstrated either by actions in the way they live their own lives, or through commitments and actions for others. Past award recipients in 2017 were Royston Thompson (Noteworthy Award), Tiffany Keane (Champion Award), and Karen Stewart (Michele Castagna Medal). All previous winners are listed on the Alice Springs Town Council website.
To nominate somebody for an award, there are several options, both assisted and unassisted. Forms are available on the Alice Springs Town Council Website. DAS can also print out forms upon request and provide assistance in completing award submissions if required. DAS can be found at 4/54 Reg Harris Lane or contacted on 8953 1422 from 9:00am – 4:30pm Monday to Friday.
DAS offers a free, confidential advocacy service to persons and families with a disability, supporting and empowering clients to exercise their own rights in accordance with the NT Disability Advocacy Standards. In everything DAS does, it seeks to create an inclusive community that recognises, respects, and provides equitable access for persons with a disability.
To get involved in IDPwD, visit their website at www.idpwd.com.au and don’t forget to join in the celebrations on 3 December! More details will be published in this column closer to IDPwD.
For more information about the Mayoral Awards, contact Alice Springs Town Council on 08 8950 0500 or at [email protected] Information packs and nomination forms can be downloaded from the Alice Springs Town Council website – http://www.alicesprings.nt.gov.au/events/mayoral-awards
Disability Advocacy Service (DAS) is an organisation that supports people to navigate the systems that provide services for people with disability. We inform of rights and respond to concerns that a person may have about their care plans. We can also help people through the process of reviews of NDIS plans and appeals.
However the best person to advocate for what they might need is themselves – this is called self advocacy. A number of skills are needed to be able to do this including confidence, communication, and sometimes a lot of resilience. It can also take a change in the way we think.
Well-meaning support workers, friends, family and care-givers might feel the need to “take over”: this can also happen in service meetings where the person with a disability might be in the room, but the talk goes all round. Decisions can be made by others and the only contribution the person at the centre of it all is, simply asked “Are you OK with all of that?”
The person has not been able to participate and there are quite often assumptions made.
So lets change the thinking about enabling people to have a say for themselves. Self advocacy starts with knowing what it is that you want, being able to communicate that to others and being heard. That in turn means that as receivers of that communication we need to really listen to what is being said, and not make assumptions or assessments based on previous experiences on provision of services or known understandings of the person. People are not static robots, we all change our minds, develop new interests as we mature and develop new opinions and ideas.
Being able to speak out about the way you want to live your life is a right we all have, we need to listen to people to support them to grow in confidence to be able to say what they think and to give them the opportunity to advocate for themselves.
DAS is supporting people to learn more about self-advocacy in association with Mental Health Association of Central Australia (MHACA) for clients and workers. Then we will be rolling it out to workers in other organisations, and we would like to offer training to people who would like to support people in self advocacy.
We have just employed a Trainer -Vanessa – to help in this training so please feel free to contact DAS if you would like more information.
We will also be contacting our clients and their family and friends to help us set up an advisory body called the Friends of DAS to work with us on developing our services and in particular to monitor the self advocacy initiatives that are happening.
DAS is looking for someone that can assist with learning Australian Sign Language (AUSLAN). There are a number of clients of DAS who could benefit from AUSLAN support, and DAS staff are also interested in learning. If you know anyone who could support us in this, please make contact with us at the DAS office in Reg Harris Lane.
We would also like to congratulate Bindi on their 40th birthday – great birthday bash! Well done everyone – we all enjoyed ourselves.
I recently turned 88 years of age, and I have been disabled-but-mobile for 11 years. (Multiple spine injuries acquired over many years.)
To be disabled and old does not mean that you have automatically stopped using your brain, although this seems to be a widely-held assumption, I think.
Thanks to those complete strangers who stop and say, “Can I help you?” / “Are you okay?” in car parks and stores. Even the very heavy doors in some business venues can present a problem.
Thank you to Jemima, Cancer Council, for asking me to assist on two “Daffodil Days” stalls recently; an enjoyable time, good company and a very good cause. I do not think that my lack of mobility was any deterrent to the day.
I’d like to share information about some services and equipment which I have found useful:
I am fortunate to have Telecross by Red Cross, who phone me every morning to check on my welfare. No charge just choose the time, and frequency of contacts; all volunteers on the phones, easy to arrange, and a “feel-good” start to the day. To learn more information about accessing Telecross, please phone Red Cross on 1300 885 698.
Home Care Services, which provide inexpensive contact on a personal level; I currently have a support worker for 3 and a half hours per week for some shopping and general house cleaning. Other help is available if required. The support worker will contact his/her local office if a situation arises when a client needs emergency assistance. To access in-home support, an Aged Care Assessment is required. To learn more about Aged Care support, contact My Aged Care on 1800 200 422. For Disability In-Home Support Services, contact the National Disability Insurance Scheme on 1800 800 110
Carers NT is an organisation that provides support and resources for anyone who cares for others. Phone Carers NT on 1800 242 636 for any information and assistance.
“Walkers” are a wonderful piece of mobility equipment – mine makes the difference between walking and not and is a major item towards living a reasonable lifestyle. Handy for taking washing out to the line, with a basket for small tools for small jobs and items to be “put away”, some shopping, and sometimes functioning as a carriage for my small dog, Sam!
What lies at the heart of disability advocacy? For me, disability advocacy is an art and a science.
Disability advocacy requires both creative action and productive thinking in its work.
Disability Advocacy is a collaborative and guiding process of doing with. And one of the primary
focuses of that collaboration is an individual’s recognition and realisation of their rights.
Once upon a time, I worked as a disability advocate in Alice Springs. Working at Disability
Advocacy Service (DAS) I accumulated a mountain of fabulous, enriching experiences.
The most contagious laughter I’ve ever heard belongs to a woman I worked alongside, while
working at DAS. She is a wife, a mother, a fantastic story teller and she has the genetic condition
At DAS I had the great experience of developing a rewarding affinity with a man living with
rhabdomyolysis. He would have liked to live Tennant Creek, closer to family in Elliot, but remains
in Alice Springs, and too young to be a resident of the nursing home in which he lives.
Parents often call into DAS. Navigating a too-efficient world for their child who isn’t mainstream can
be perplexing, confusing and exhausting. I admire the tenacity love can possess, and I’ve seen
raw tenacity in these parent’s indefatigable endurance.
At times, I see a world that encroaches on a person’s right to be different without being seen as
Too often prejudice against people with a disability, assumes their lives are bleak, desperate and
final instead of a life worth living full of self-confidence, innovation and independence.
At DAS, however, I also observed pride in people describing their complex situation living life with a
disability. A blind man I developed a rapport with only ever over the phone, described his anxiety
about ever having to leave the house, had a world opened up to him by simply allowing me to
arrange for a Guide Dog instructor to visit him in his own home.
Living and working in Alice Springs, I am frequently challenged to uphold the framework of cultural
safety. I have learnt to scrutinise the power relationships between worker and consumer. As I sat
one day under a Red River Gum, yarning with a woman who has bilateral below knee amputations,
and who must surely be a contender for having the world’s most twinkly eyes, I learnt how to listen.
And the way to listen, is to talk less. Many times since I have recalled this lesson of listening long
and hard first, before asking more questions.
I hope disability advocacy goes some way towards helping others to make new lives and worlds for
themselves. I know DAS will continue to treat people with dignity and about the power people with
disabilities have to stand up and say ‘I have a right to be treated equally to other people’.
I have learnt a great deal about the spirit of survivors working at Disability Advocacy Service, Alice
Springs. I thank the Alice Springs community for this opportunity, and express deep gratitude to my
clients, colleagues and mentors along the way.
If like me you are between the ages of 32 and 50 and you have developed a disability while between these ages, you probably found that it impacted on your employment in some way. Sydney University researchers Paul Williamson and Associate Professor Jennifer Smith-Merry would like to hear from you about the impact that your disability has had on your career. They are conducting a survey entitled the “Onset of Physical Disability Mid-Career” because there is a lot of room for improvement in employment for people with disabilities in Australia and they are trying to identify both strategies that work and where there are gaps. It was widely reported in 2011 that Australia ranked 21st out of the 29 OECD (Organisation for Economic Co-operation and Development) Countries but when I went searching to find a more current statistic I was not successful. So, if things haven’t changed a great deal – there seems to be plenty of scope for progress.
The survey is targeting both people who have continued to work (even if you are not in the same job) and those who are no longer working. I have taken the survey and I need to warn you that some of the questions are confronting and I found that there were at times uncomfortable emotions bubbling to the surface that I had not expected. There are phone numbers included in the survey material for both Lifeline and Beyond Blue should you find it too overwhelming. That said, I found the survey to be worthwhile and very interesting and it certainly helped me to sort out how I felt about my own workplace experiences.
In Paul’s words “Speaking to the people most affected – those who have been able to continue working, and those who have not – provides essential first hand perspectives on the issues facing people with disability at work. These first hand perspectives must be better incorporated into the narrative if real change is to be achieved – change that will see more people with disability do what many take for granted.”
The hope that this survey carries for me is that the more voices that speak up about workplace experiences – both positive and negative – of people with disabilities, the more likely we are to be heard and the more likely there is to be positive change in the future. My goal is to continue working for as long as I am physically able – and that time I know can be extended by some workplace adaptations and understanding.
If you are in the target demographic and would like to participate in the survey, or even if you just want to know a bit more about it, go to: http://sydney.edu.au/health-sciences/cdrp/ Alternatively, if you are unable to access the online survey you can contact the Chief Investigator Paul Williamson by email at [email protected] or by telephone on 0402 974 010. I found Paul very approachable and happy to chat.