There are upcoming support group meetings in Alice Springs.

PARKINSONS SUPPORT GROUP:

You’re invited to come along to meet others with Parkinson’s Disease, caring for people with PD or an interest in Parkinson’s. Come along for talks on Parkinson’s medications by a Pharmacist and an Intern Pharmacist, plus a question & answer session. Contact Disability Advocacy Service for more information on 08 8953 1422.

NEXT MEETING:
Date: Thursday 28 February 2019
Time: 6:00pm – 8:00pm
Location: Gillen Club Board Room – 57 Milner Road, Alice Springs
Meeting Flyer: Parkinsons Support Group Meeting 28 Feb 2019

Supported by Disability Advocacy Service Inc.

 

VISION IMPAIRED SUPPORT:

The first Vision Impaired Support Meeting occurred on Friday, 15 February 2019.  If you were interested but couldn’t make it, feel free to contact Carol on 08 8952 3362 or DAS office on 08 8953 1422 for further information.

This is an inaugural get together to assess the needs of Centralians with vision impairment. This could include information about access to services and resources, identifying common needs and how they might be addressed. In future meetings there could be guest speakers, knowledge sharing and general support. We would appreciate hearing from anyone prepared to volunteer their time to assist with transport. For further information, please call Carol on 08 8952 3362 or DAS office on 08 8953 1422.

FIRST MEETING:

Date: 15 February 2019
Time: 10:30 AM
Location: Disability Advocacy Service Office – 4 / 54 Reg Harris Lane, Alice Springs
Meeting Flyer: Vision Impaired Support Meeting 15 Feb 2019
Supported by Disability Advocacy Service Inc.

 

 

New Kid on the Block

Published in Centralian Advocate Newspaper
29 January 2019

By Annie Ernst, DAS Advocate

There’s a new kid on the block to support people in Alice Springs with movement disorders – the Parkinson’s Disease Support Group. This group is for anyone with Parkinson’s Disease, and people who care for someone with, or have an interest in Parkinson’s.
The Parkinson’s Support Group’s first meeting is on Thursday 31 January, from 6pm – 8pm in the Boardroom at the Gillen Club on Milner Road. The theme of this meeting will be ‘sharing’, so bring along an idea, strategy or item that has helped you (or someone you know) with some aspect of Parkinson’s. If you can’t think of something that you would like to share, you can still come along to listen and meet others.
If transport is an issue, or there are other barriers to you attending the meeting, but you would like to come, please contact the Disability Advocacy Service on 8953 1422. And please get in touch if you would like more information about any aspect of the group or its meetings.
The February meeting will be held on Thursday 28 February, from 6pm – 8pm at the Gillen Club, and will have a pharmacist as a guest speaker to address concerns and questions about managing medications. If you would like the pharmacist to answer a question or address an issue, please send your enquiries through to Annie Ernst, Disability Advocate at [email protected] at any time up until 28 February, and these will be passed on to the pharmacist before the meeting. If you come along to the meeting you will also be able to ask questions directly.
Planning for the group’s meetings and activities in the next six months is currently underway and it’s shaping up to be an exciting year! The Disability Advocacy Service encourages anyone who would like to be involved in planning meetings and activities for the second half of the year (even a single meeting) to get in touch.
Upcoming activities for 2019 include a speech therapist who will talk about communication (and do some ‘Yell Well’ with the group) in March, and there will be special activities and promotions for Parkinson’s Disease Awareness month in April. There are also plans to have occupational therapists address the group, as well as a visit by specialists from Parkinson’s SA (which is now supporting the NT with a name change reflecting this to occur in the future). Parkinson’s SA will video their seminars throughout the year (16 seminars in total) and make these available for the group.
The Parkinson’s Disease Support Group is a valuable opportunity for you to find and share peer support with others, and a great chance to socialise and connect with the Parkinson’s community!
Tune in to local Alice Springs ABC radio (783AM) on Tuesday 29 January, soon after 10am, to hear an interview about the Parkinson’s Support Group, and don’t forget to contact the Disability Advocacy Service on 8953 1422 for more information. Hope to see you soon!

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)

There is a Parkinson’s Support Group meeting on Thursday 31 January from 6pm – 8pm in the Boardroom at the Gillen Club on Milner Road. The theme of this meeting is “Sharing” – please bring along an idea or strategy or item that has helped you (or someone you know) with some aspect of Parkinson’s Disease.  At the bottom of this post are links to both a promotional poster and an agenda for the January meeting. If you would like hard copies, they are available at the Disability Advocacy Service (DAS) Office – or give me a call and we can organise what you require.
Please publicise our meetings – we would like to reach as many people with Parkinson’s Disease as possible. DAS can provide posters for you if you would like to distribute them.
If you or someone that you know would like to attend the meeting and is having difficulty with transport to and from, please let me know.
The February meeting will be on Thursday 28 February from 6pm – 8pm at the Gillen Club and we will have a Pharmacist as a Guest Speaker to address some concerns and questions about managing medications.  If you have any particular questions and concerns that you would like the Pharmacist to consider please send them through to me at any time and I will pass them on prior to the meeting. You can also of course ask questions at the February meeting.
I am in the process of planning meetings and activities for the first six months of the year (it’s looking exciting – come along to the January meeting for more info!) and am hoping that one or more people within the group will take on planning the second half of the year (or even a single meeting) – anyone who would like to do so will of course have the support of the Disability Advocacy Service office.
If you are able to tune in to the local Alice Springs ABC radio next Tuesday 29 January, I will be interviewed by Emma Sleath about the Parkinson’s Support Group soon after 10:00am.

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

Sexual Assault Referral Centre, Alice Springs

“Breaking the silence around sexual assault”

Published in Centralian Advocate Newspaper
Tuesday 20 November 2018
By Christa Bartjen-Westermann (Manager, SARC) & Val Dearman (CEO, DAS)

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.

“Breaking the silence around sexual assault”

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

Support for People with Parkinson’s Disease

Published in Centralian Advocate Newspaper
Tuesday 06 November 2018
By Annie Ernst

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.

Mayoral Awards Now Open

Published in Centralian Advocate Newspaper
Tuesday 23 October 2018
By Annie & Sarah Ernst

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.

Categories are:
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

Published in Centralian Advocate Newspaper
Tuesday 9 October 2018
By Valerie Dearman, Disability Advocacy Service CEO

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.

“You don’t have to become their best friend; Just slow down and ask, ‘Can I help you with that?’”

Published in Centralian Advocate Newspaper
Tuesday 25 Sept 2018
By Pat Pate

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!

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