Author Archives: Guest Blogger

Good Things: Good communication is central to active participation

Who_We_Are

Thanks to Andrea  McQueen from Australia for this lovely blog describing the Good Things Project which shows how good communication is central to active participation for people with intellectual disabilities

Across the world, many thousands of people with intellectual disabilities live in group homes. These are houses in the community shared by about four to six people with disabilities. Many of these people have communication difficulties of various sorts.
Communication is essential to many activities both within the home (e.g. making a shopping list, choosing what to watch on TV, letting your house mates know when you need some space) and beyond (e.g. developing and maintaining friendships; participation in education, employment and leisure). For many group home residents, participation in these activities relies on access to appropriate augmentative communication systems, and to trained staff who can support their use.
In twenty years working as a speech pathologist in Australia I have been in and out of a lot of group homes. Some do things better than others. Some value communication more than others. Some group home staff routinely use augmentative communication systems, such as Talking Mats, Key Word Sign and pictorial timetables. Unfortunately many do not. Each time I leave a group home, I ask myself the same question: “Could I live here?”
When I first came across the Roydon Street group home here in Melbourne I was impressed. This is a house where communication is respected, where people are listened to, and where genuine choices are offered. It’s not perfect, but it passes my simple test – it is a place where I could imagine living a good life.
I wanted to share the philosophies and practices of Roydon Street around the world. I hoped to influence other group homes to adopt the same simple strategies for their residents. So I sought funding and made a video – Good Things.
The Good Things video aims to show how simple communication strategies can contribute to a good quality of life for people with intellectual disabilities in group homes. It demonstrates how a culture of respect and autonomy can develop when staff understand how to listen to clients and support their communication methods. It shows what is possible in a sector that gets a lot of negative publicity.
Good Things was funded by the Victorian Department of Human Services, and the closed captions on the video were funded by the City of Bayside. The video is the result of a partnership of many agencies and individuals. Special thanks to the residents and staff at Roydon Street. Good Things was released on YouTube in March 2014, and to date has had more than 800 views in 17 countries (not quite keeping pace with Lady Gaga!). It’s a small project, but I hope it has made a difference. I know the team at Talking Mats shares the passion for improving the lives of people wherever they live, and I would love to hear from others with an interest in this area.
Click here to see the Good Things video
Andrea McQueen
Inner South Communication Service
Email: amcqueen@cbchs.org.au
Twitter: @aj_mcq

“Talking Mats – a way to find out about harm and abuse”

karin

My name is Karin Torgny, I’m from Sweden. My background is in journalism and culture studies. I used to work in “The Development Centre for Double Exposure” for many years, and our mission was to improve and spread knowledge about violence against women with disabilities. My special interest during these years was AAC. Today I work for Unicef and in different projects on human rights issues.

A year ago I did my accredited Talking Mats training in Stirling, Scotland. Since then I have given my first course in using Talking Mats when talking about abuse and harm. It was a great experience and an opportunity to work with an enthusiastic group of women who were open and willing to communicate using symbols. They are all in an organisation working with girls/women with intellectual disability exposed to violence and oppression in the name of honour.

I think Talking Mats is a good tool when approaching difficult subjects and I hope to run more courses like this in Sweden in the future. Lately I was interviewed on the Swedish Radio and talked about the use and possibilities with Talking Mats when someone is exposed to harm and abuse.

For those who know Swedish (!), here is a link to that program, http://t.sr.se/1mxZv9W

I am also curious if someone else is doing something similar. If so I would be interested to know more. Send an e-mail to: karin.torgny@gmail.com

Have a look at how Talking Mats has been used in Scotland to support people with a learning disability to disclose issues of concern: Survivor Scotland

Talking Mats…….Is it suitable for Parents?


Many thanks to Lynne Baxter who has answered the question: Is Talking Mats suitable for parents to use?

I have been asked to write an account of my experience, as a parent, of completing the on-line course available for Taking Mats. I completed this course in April this year 2014 and I am very proud of my achievement. First some background information. I am nobody special just a parent of a child who has a diagnosis of Autism Spectrum Disorder/Condition. My son is in a mainstream setting and has limited access to support and resources due to financial restrictions. Through time I realised that I was his main resource for support and really needed to improve my knowledge and understanding of this “hidden disability”. I had already heard about the wonderful resource that is Talking Mats, the tool that help makes communication easier for many. I started to do my research and find out more about it. I am not a professional who has been trained on the Autism Spectrum, my knowledge is only from my experience of having a child on the spectrum. I was unsure if I would be able to do this. After much consideration I took the decision to give it a try! I am so glad I did. While insuring that the product would be of benefit to my family, I nervously contacted the wonderful supportive team at Talking Mats and asked them what they thought. They were very encouraging and I felt empowered to try the training course! They assured me that they would help me as much as they could. This was very reassuring to know and gave me the reinforcement I was looking for.

Every week I was given access to each module which I completed to the best of my ability. Anxiously waiting for the result and the feedback from the team to see if I was able to attempt the next module was normal for a Wednesday while doing this course. To my great relief the feedback was positive and before I knew it I was nearing the last assessment and the completion of the course. The last assessment involved me and my son using the resource Talking Mats, this had to be filmed and sent for grading! Once again I had to push myself out of my comfort zone! It will be worth it for the benefit the training would give to my family. A friend came and videoed the situation and it was sent off for feedback and grading.

I passed! The feedback was amazing and now I can use the resource that will help my son explain his thoughts and feelings in a concrete way. The hardest thing for me was not to influence the results, I had to make sure it was his views and not mine! I have now registered to use the app and I am continually surprised by the evidence. I am delighted with the continued support from the team and I am very grateful to them for the resource. My son finds it hard to express his emotions, thoughts and feelings. This gives me hard evidence of his opinions and is great to have to reference too throughout the years!

Having to use open questions has helped my son communicate more than he knows! A very good result!

For information about the online training click here 

Learning Disability and Dementia: a case example

activities (post dementia diagnosis)

Using Talking Mats with Tony, a 53 year old man with learning disability and dementia. A guest blog by Rebecca Leighton  Specialist Speech and Language Therapist and Consultant for elenbi-uk 

“When I change I will be different” 

Tony was referred to me for Speech and Language Therapy around 6 months after being diagnosed with mixed dementia.  Dementia was having many effects on him but a key impact was communication difficulties: one of these difficulties was dysarthria (for him, this meant slow, slurred, effortful speech and difficulty maintaining enough breath support to finish his sentences) and  another word-finding problems (difficulty remembering and producing the words he wanted to say – like the “tip of your tongue” phenomenon we all get from time to time, but occurring in most of Tony’s sentences).  These two communication difficulties combined made talking very tiring and frustrating for him.

When I first met Tony, one of my aims was to find out what he wanted to achieve with Speech and Language Therapy.  We discussed this but it was tiring for Tony and it became clear very quickly that using words alone was not helpful.  It also became clear in that first session that although Tony was concerned about his speech, he was more concerned about his future and other areas of his life. He was worried about how he would enjoy life with dementia. He knew he would get worse and he wanted to know how he and his family would cope with that.  Tony said “When I change I will be different. What will I do with myself?”

I introduced Talking Mats to Tony at our next session, suggesting that it would be a way of exploring what he was worried about in terms of his overall health and wellbeing and also  what he might want from Speech and Language Therapy.  We did four Mats over the course of two sessions:

Mat 1: Starter topic (food). Tony managed a three-point scale easily (“like” “dislike” and “not sure”) and told me “This is alright, its easy. I can talk if I want. But I don’t have to.”

Mat 2: “My worries”.  Tony used a three point scale to indicate whether he was “not worried”, “a bit worried” or “very worried” about a range of aspects of his life and future.  We found that Tony’s main worry was what he would do with his time as his dementia progressed.

Mat 3: “Activities with dementia” – a sub-mat based on Tony’s main worry identified in Mat 2. This was done jointly with his advisor, Sabira, from his local dementia support service, who planned the mat with me to ensure it covered all the options Tony had available to him locally. The mat revealed that Tony was already attending a well-being café but wanted to try other well-being cafes too, to meet more people.  He was keen to try the singing group and also felt that his family needed support.  Sabira commented that she thought Talking Mats should be used more with people with dementia and she intended to explore this within her own service.

Mat 4: “What I want help with from Speech and Language Therapy”.  Again we used a three point scale, this time to indicate “yes”, “no” and “maybe” to possible goals for Tony. Options included assessment, therapy and advice. We chatted around each topic, giving Tony more information on each possibility and discussing if and how it could benefit him. Tony made informed choices around each option, and made the decision to start by creating a Life Story.

photo speech therapy goals

With Talking Mats, Tony has been able to give his full views on some very difficult topics for him. He has done so in a way which has reduced the demand on his speech, which made the discussion easier and less tiring for him. He has taken control of his Speech and Language Therapy care and has made informed decisions about his therapy goals.  Perhaps more importantly he has taken control of his future and made informed choices about what he wants for himself and his family for the rest of his life.

Talking Mats could be used by many services for people with dementia.  Imagine how empowered people with dementia would be, for example, if their social worker or dementia adviser were able to use Talking Mats with them to identify their needs and wishes and help them choose what they want for their present and future. What better way to involve people in their own care?

The only caveat? Get in there early. Empower people to tell their story while they are still able to use pictures and words to do so.  Dementia can steal these skills, burdening families with making decisions on behalf of their loved ones.  As a daughter, mother, wife and sister myself, I know I would feel much more at ease with making a decision for my relative with prior knowledge of what they themselves would have wanted. Talking Mats is one way of finding that out.

 

 

A tool to help those difficult conversations

image

I like my iPad and I LOVE the new Talking Mats app.
My 89 year old mum lives on her own about 2 hours from where I live and enjoys looking at photos on my iPad Mum has ‘all her marbles’, as the saying goes, and freely expresses her extreme views on current affairs, politics and photographs in Hello magazine! More difficult however, is discussing her failing energy levels and physical strength. She has till now resisted all suggestions of moving house to somewhere with more support.

I knew she would be interested in the Talking Mats app and a demonstration one afternoon flowed naturally into the Domestic topic of the Health and Well Being section. Suddenly we were in the middle of that difficult conversation we’d both been avoiding. Mum fully engaged with the app and changed the position of some items after consideration

The reality is she isn’t managing, she’s struggling. For the first time using the Talking Mats app she confessed to all domestic tasks being difficult even with the bits and pieces of help going in regularly.
The app made that bit easy. Making a decision about the next step will be more difficult.

Rhona Matthews