A Volunteer's experience as an Advocate
(Thank you to the advocate for sharing their story)
I found North East Citizen Advocacy (NECA) in the local paper. Just a small advertisement with a big message about being able to provide our greatest gift of time.
NECA have been wonderful in supporting and facilitation the relationship that I have with the participant. They were spot on in matching him with me and he tells me that he enjoys his time with me too - win!
There is never a dull moment. He is an exceptional young man with a heart of gold and he is always looking for a way to make you laugh and smile.
His enthusiasm, his attitude and his willingness to try means that he an I get to have a lot of fun while tackling our tasks together.
Another great part of the match is he is also helping me to do and experience more. Together we have played tennis, been to the arcade, had walks in the park, gone to football matches, and I have been canteen man when he has a home game!
Being an advocate for someone with an intellectual disability has certainly been a positive journey. We've been matched for a quarter of a year now, but it is clear there will be many more experiences to share, mutual developments to discover and a whole bunch more laughs together in the future.
I want to thank you for this opportunity NECA and ask you please continue making a difference.
NECA has some great tools for educating our community on the United Nations Convention on the rights of people with disabilities.
Through our Advocate Resource page you can access our handbook in easy English. It explains what we mean by rights, what the Government has to do and how to check that people get their rights. It also goes through how the Convention will help disabled people and how you can use the convention to effect change. Again, this is all in easy English so it's a great tool in teaching EVERYONE about these rights. We encourage you to have a read through it, it's quite interesting reading.
We also decided to make some visual cards that individually list each article of the convention - article is the term used for right. These images are visual and are a fun way to raise awareness and educate people.
Below are a just a few of these cards. If you'd like to see them all (5 through to 30) head over and check out our Facebook page. You can find us under North East Citizen Advocacy - Australia, please like and share these images to spread awareness.
Feel free to let us know what you think and what else you would like to see done to help raise awareness for people with disabilities.
Leslee Hogan is a Parent/Social Worker/Advocate.
Please read this piece she has written and we encourage your opinion and thoughts.
"Reflecting on the vastly different meanings the word "support" has for people with disabilities. It's not just the word, its the vastly different realities people with disabilities inhabit. And the vastly different jobs support workers do. It's truly wonderful to hear the stories of people with disabilities finding meaningful employment. It's fantastic to see photos of people with disabilities having adventures, pursuing their interests, developing their life skills, explo...ring their creativity, expanding their social world, gaining/regaining independence. I recently had the pleasure of meeting Lisa Ashford-Potter who asked about the kind of support workers my son needs. My response was "the first thing is, they need to be able to keep Sam alive". I went on to explain that anyone who supports my son must have the capacity to learn some basic medical knowledge and procedures in order to keep my son safe and well...because NONE of his community participation or other goals can be pursued unless he is well enough to pursue them, and support worker errors can result in many months in bed, or worst case scenario - his death. Through experience I have found that not all support workers have the capacity to learn the more nursing/medical side of my son's support, even experienced workers...even with the best of training (believe me I spend a lot of our budget on training!!!!!). Yesterday I watched a video produced by a disability service with a sound reputation. The video profiled people with disabilities enjoying themselves with their support workers, swimming, acting, learning life skills. While the organisation provides services to people with all kinds of disabilities, only those who were mobile, physically active and who had no unusual physical features, or obvious disability, were featured in the add. It really got me thinking. I wondered if even our tax payer funded disability services wanted to make those people with higher support needs invisible? It was an ad to attract support workers and they made it all look like so much fun ... which is great, but it's only half the story. The support worker role for people with higher needs was not represented at all. It left a certain group of service users, who also need support, hidden from view. There wasn't a wheelchair, a communication device, or a van hoist in sight. As the parent of a young adult with very high support needs, I feel that the discourse around disability is strongly aimed at those who are more able to enjoy the good things life has to offer. I would not deny a single one of those people the opportunity to make the most of their lives according to their interests and passions. I WOULD like to hear, on occasion, those with higher needs, whose lives are vastly different, by necessity NOT by choice, included in the discussion. At the moment, I feel they are invisible...even to defenders of the cause. Is this a reflection on how they are valued?"
Leslee is keen to connect with people who are concerned about this issue and can be contacted via email firstname.lastname@example.org
What supports do you use EVERY DAY? We strongly recommend recording your day to day life and supports in a notebook that you can carry about with you starting NOW!!! The better prepared you or your friends or family member are, the better the NDIS changeover will be. Its only 8 months away......start now and you'll be sitting pretty by July 2016.
It's pretty overwhelming to think that you need to provide a lists of ALL your supports for your plan. But don't worry, NECA are here to support you, together we can do this.
We are sharing a list of support categories below. Feel free to add more supports to the comments section below that you think will be easily overlooked at the planning stage. The more we share, the more we can help one another and the less daunting this will be..
These support categories have been sourced from the 8th Quarterly Report to COAG Disability Reform Council 30th June 2015 and are actually supports that participants in the Barwon trial area listed on their plans.
Assess-Skill, Ability, Needs - this is paying someone to assess your skills, ability and needs.
Assistance Access/Maintain Employment
Assistive Products-Personal Care/Safety
Assist-Life Stage, Transition
Assist - Personal Activties
Assistive Products-Household Tasks
Comms and Info equipment
Community Nursing Care
Daily Tasks/Shared Living
Early Childhood Supports
Equipment Special Assess Setup
Other Innovative Supports
Participation in the community
Personal mobility equipment
Hope that helps you with all the different types of supports that you may use.
Again, please share with us your types of supports or if you have any questions, please ask. We will do our best to help.
Preparation is key!! Good luck.
Here are some great examples of the many changes that have happened for people with an intellectual disability, when their voluntary advocate is active in their life.
The stories come from the program but their names have been changed for privacy reasons.
Jenny knows little about freely given relationships. She has made friends with the people she lives and works with, but doesn’t have a meaningful relationship with people in her community. She has spent her entire life in care of human service workers, who have to it that she is housed, clothed and fed. They have provided her with programs and activities to fill her days and at times she has formed close relationships with some of the workers. Her advocate Clare lives a ten minute walk from her place and comes to visit just her, to have a cuppa or to invite Jenny out. Clare invites Jenny over for dinner or lunch at her home. Together, they go out shopping for those special things you need to choose carefully. Clare takes an interest in the things Jenny does in her life and is a friend who will ask her, “What would you like to do?”. Jenny doesn’t have to share Clare with the other residents and she can feel proud knowing that her friend (advocate), has come especially to see her.
Joe lived in CRU and had no access to the wider community or to pursue individual interests. Janet organized for Joe to be enrolled in a literacy class at a neighborhood house. Being able to attend this class with Janet’s support, was the first step of his move in to the community from the restricted setting he had lived in for years.
Karen was able to help Rod, Jane and their children move within the public housing system, from a small flat to three-bedroom house with a big garden. Rod and Jane’s old neighbours had taken advantage of them and smothered them, so the situation was very a difficult one. Since Karen was able to quickly collect all the appropriate documentation to get priority housing, Rod, Jane and their children moved less than six months after the process was put into place, rather than the usual 7 year wait.
Gina lives in a private rental locally and is a great mother who has raised a beautiful daughter. Gina now has a citizen advocate who sees things from her perspective and has made some discoveries that have unfortunately highlighted many issues. Gina’s housing agent had ignored multiple reasonable requests to have serious property concerns addressed for months such as no smoke alarm, broken fans, broken heating, broken gates and fences. Gina’s citizen advocate stepped in and contacted the agent together with Gina and the problems were immediately addressed. It was then discovered Gina had been sleeping on protruding wire springs due to the inaction of previous workers and services. A new bed was immediately arranged through a charitable organisation and Gina’s daily physical pain has reduced dramatically and home care services have been contacted to assist with cleaning due to the physical barriers. When Gina moved to this new home she never left the house due to anxiety as the area was unfamiliar and past social and community networks were lost due to transportation issues, now Gina has slowly been connected to local places and frequents places of interest with her advocate. Now Gina frequents her local community independently, her anxiety has decreased, and she is feeling value from being a part of the community. Gina has chosen not to have paid support workers in her life as she now has inclusive pathways that were previously absent. This very recent NECA program story is NOT just about fixing what was broken. It is about increasing natural supports and connections, adopting realistic and sustainable valued roles, empowerment and learning strategies for effective self-advocacy through her citizen advocate. This is real inclusion, this is a real grassroots community response, this cannot be bought, and this cannot be sold.
Frank lives in supported accommodation and he is well cared for on a day to day basis. His advocate Simon visits him regularly and makes sure that Frank has his needs met. Simon was very concerned when Frank was not receiving proper dental care. After some research, Simon found an appropriate Dental Clinic for Frank to go to and have regular check ups at.
Lena has many carers and family involved, but they are all 20+ years older that her. She is extending her social circle through her new friend (advocate), Emily. Emily takes Lena to places where they both meet people their own age. Emily and her Uni friends take Lena to the MCG to see her favourite footy team play. Together they overcome the difficulties of getting her manual wheelchair in to a good spot where Lena can watch the game amongst her peers.
This is just a small snippet of what Citizen Advocacy achieves, please share with us your experiences and stories……