Tag Archives: communication access network

Building for the Future – A local training organisation focuses on communication support skills in their Cert IV in Disability

In 2015 there were 4.3 million Australians living with disability, and over one-quarter (1.2 million people) had a communication disability.

The Certificate IV in Disability provides students with the skills and knowledge to work effectively with people with disabilities in a range of services. Students learn to develop and implement programs that empower people with disabilities to achieve greater independence and well being. Students later work in residential group homes, training resource centres, day respite centres, other community settings or people’s homes.

Many training organisations across Australia do not include optional communication units in their Cert IV Disability courses, but Federation University in Ballarat recognised that skills in communication are very important. They wanted their students to know more about communication and the different ways people can communicate.

This year, Grampians Regional Communication Service is working with Federation University for their Certificate IV in Disability, aiming to give students a more “hands on” experience of AAC devices and communication strategies.

The VET Teacher for Disability & Community Services and the Regional Communication Service speech pathologist are working together, focusing on developing student skills in identifying communication needs and implementing strategies to support communication needs.  Students will have an opportunity to try, experience and ask questions of a range of AAC devices, enabling future disability support workers to support others with their communication needs. Students will get to experience diverse AAC, such as Talking Mats, chat books, communication boards and books, community request cards and key word sign as well as speech generation devices. Assignments and lectures have been designed to have a more realistic feel and to focus on facilitating and supporting communication to increase independence and participation. Students are also informed of resources available such as allied health professionals, visual supports, Communication Access, Easy English and the National Relay Service. 

For more information on Federation University’s Certificate IV in Disability see: https://study.federation.edu.au/#/course/DLLA

By Georgie Turner, Grampians Regional Communication Service

Working Together to Build Communication Access –          Our First Award!

The four young women taking action on communication access in Bendigo (see last month’s blog) have made their first award to a local small business for being so communication friendly.

They regularly visit the Terminus Milkbar in Golden Square. They have always felt respected and have been able to communicate successfully without speech.

The staff were delighted with the certificate. They put it up where everyone could see it.  

Presenting the certificate


Using the communication board to explain:  “You are welcoming, take time to communicate, talk directly to us, and listen really well.”High fives all round!Everyone is proud

Southern Loddon Mallee Regional Communication Service

Communicating Choice in NDIS: Building NDIS Staff Skills – East Hume Regional Communication Service

East Hume Regional Communication Service facilitated a very successful Talking Mats training day in Wodonga this week.  Karyn Muscat from Zyteq presented to an enthusiastic fourteen participants from across the Wodonga and Wangaratta regions.

They included Local Area Coordinators, support coordinators from disability and mental health agencies, as well as speech pathologists and disability support workers.  A number of those attending also had family members with communication disabilities and were interested in gaining new skills to support their communication.

The session also provided networking opportunities. There were some very interesting conversations about the current disability services landscape.  The session also highlighted the role of the Regional Communication Service in advocating for people with communication disabilities and their support networks and the practical services we can provide.

Here’s some of the feedback on the day:

“I came to the training with a specific resident in mind, but I got so much more.  I can see this being beneficial for all of our guys”

“This will help me better support the vulnerable people who use our service with their decision making”

We were thrilled to be able to provide such a useful resource to a wide range of services and feel that it is a positive addition to the skills of disability services in our region.

 

Meredith and Kelsey

 

 

Working Together to Build Communication Access – Southern Mallee Regional Communication Service

Everyone was ready around the table when Meg arrived just before 10.30. We waited for the others to leave and shut the door. We moved so we could see each other.
We talked about Communication.
We looked at a picture of two women talking – Communication is about understanding and getting your message across.
We talked about the different ways of communicating – We found 5 ways:
• Talking
• Signing (“Sign of the week” was “boat” so we used that.)
• Drawing
• Writing
• Choosing and pressing a button on the Tech Talk (a speech generating device)
We all had a go doing each one.

We know that not everyone speaks, but everyone communicates – and everyone has the right to communicate.
Meg left pictures and a folder for each of us. She left more information and the Tech Talker so Kharlie can practise with us until Meg comes again.

So ends a typical meeting of the Communication Access Group at Distinctive Options with the Southern Loddon Mallee Regional Communication Service.

What is the Communication Access Group?

The Communication Access Group is a group of four young women in Bendigo.
The group started meeting in January, 2018. They are supported by Kharlie, a Communication Coordinator, trained by the Southern Loddon Mallee Regional Communication Service [see the 21.6.18 blog]. Kharlie works at Community Connect, Distinctive Options. Meg is the Southern Loddon Mallee Regional Communication Service speech pathologist who comes to the group each month.

How did the Communication Access Group happen?

Last year Distinctive Options partnered with the Regional Communication Service to join the local Communication Coordinators Network.
A Distinctive Options disability support worker was trained by Southern Loddon Mallee Regional Communication Service to be a Communication Coordinator. Communication Coordinators have advanced communication support skills.
The partnership between the Regional Communication Service and Distinctive Options enabled more collaboration to start a communication access group.
The Regional Communication Service developed accessible consent forms for participants and parents to sign.

The manager at Bendigo Distinctive Options sent forms to 7 people and their families.
Four people agreed to participate. Two of them also consented to being photographed.
At the end of 2017, Distinctive Options asked the Regional Communication Service to train all staff. The training was in January. It focussed on effective communication support so everyone can participate.
Then the Communication Coordinator went on maternity leave! Luckily, there was time for a new Communication Coordinator to train. The Regional Communication Service held another Communication Coordinator course at the start of 2018.
Staff rosters at both the Regional Communication Service and Distinctive Options meant that meetings had to be monthly. (Fortnightly would have been better.) The Communication Coordinator is there every week. She supports the group to review everything when the Regional Communication Service does not come.

What has happened so far?

January: We all met each other. The Regional Communication Service speech pathologist saw how well some people watched and listened, that some could read words, that one could sign very well, that most could understand speech most of the time, that some already knew about their right to do what everyone else can do. Everyone was keen to interact. Speech was not everyone’s most effective way to communicate, but that did not stop everyone communicating!

February: We talked about communication. (The February meeting was described at the start.)

March: We tried AAC (Augmentative and Alternative Communication) – low and high tech. We looked at the wheelchair access symbol and found out what it meant.
Later, everyone looked out for the symbol.

April: We found out what “access” means and looked at the Communication Access symbol.

May: We found that the Communication Access symbol and the wheelchair access symbol look different and show different kinds of access.
We looked at personal communication cards

 

June – Something extra:

The Regional Communication Service speech pathologist saw the Group was ready to use a communication board so they could prepare to have impact in the community. She looked at the research and consulted other speech pathologists at the Communication and Inclusion Resource Centre and chose the best items for the board. She made the boards using the [email protected]+ on the iPad.

Everyone needed to learn how to use the communication board, through modelling and practice.

The communication access meetings continued. But more meetings started (at a different time) so everyone could to learn to use the board. This time, the Regional Communication Service allied health assistant will come. For the first meeting, the Regional Communication Service speech pathologist and another Distinctive Options disability support worker came as well.

Eventually the communication board will have 40 pictures. Everyone got their own copy with 8 pictures to start with. The Regional Communication Service also gave the two Distinctive Options workers other resources, including a chart of the Key Word Signs (for words that will be on the communication board) and a training package about how to model AAC.

 

 

What next?

Group members are learning about communication access and rights together. The  Communication Coordinator supports everyone to communicate in effective ways and in different places in the community. Everyone’s confidence and communication skills have grown. The group will work together for communication access in the community in the second half of 2018.

Southern Loddon Mallee Regional Communication Service Communication Coordinator Network

The Communication Coordinator Network – New growth and deep roots in the Loddon Region

Grey Box tree of the Loddon region

Grey Box tree of the Loddon region © Meg Irwin

Southern Loddon Mallee Regional Communication Service started the first Communication Coordinator Network. It has trained and supported Communication Coordinators for more than 10 years.

Communication Coordinators are disability support workers from day and accommodation services. They are skilled to give great communication support to people with communication disabilities and to improve environments, so that everyone can communicate.

The Communication Coordinator Network uses a capacity building approach. It has impacted on thousands of staff in disability-funded services. It has improved communication support and opportunities for hundreds of people with communication disabilities in the Loddon region.

How do Disability Support Workers become Communication Coordinators?

Southern Loddon Mallee Regional Communication Service forms partnerships with local disability-funded service providers.

Managers of services give their Communication Coordinator time to carry out Communication Coordinator tasks, and provide resources (such as a colour printer and communication apps). They agree to support communication access for all the people using their service – within and beyond their walls.

Each year, Southern Loddon Mallee Regional Communication Service offers training for 24 new Communication Coordinators. They may be from 24 different residential and day services across the region. Trainees attend a 6 day training course over two months. Twelve workers are accepted into each group.

They learn about communication basics, Augmentative and Alternative Communication (AAC), and how to observe communication and plan effective communication support.

They learn how to support people with sensory processing disorders or behaviours of concern.

They learn about the Regional Communication Coordinator Network and its powerful person-centred approach.

They practice communication skills, identify appropriate communication aids for people they support, produce aids, explore staff support strategies, and start improving communication access and support in their services.

At the conclusion of the course, new Communication Coordinators receive badges and certificates listing their new knowledge and skills.

Alice works in a respite accommodation facility. Three months after finishing her training, she reflected on her role as a Communication Coordinator and the difference it makes:

  • Staff support participation regardless of speech ability

“Now everyone is involved in activities, even when they’re not verbal  –  e.g. playing Uno, staff play with them and explain how the game works and what’s going on – they also give them choices in what card they want to put down.”

  • She has confidence and skills to try out communication supports

“I went through one communication app in our iPod, I created a YES and NO option and I tried it with one of our people who is not verbal.  I asked her “do you want more dinner?” and she touched NO. I gave her a follow up question; “Are you full?” and she touched YES. It’s still a grey area for me until I see her communication plan and we need to spend more time with her using that app, so we know if that app really works with her.”

  • She supports staff to implement communication strategies

“The last couple of weeks we have a new person staying at the house. I spent more time with her to get to know her and I think it went really well. And she has a personal communication dictionary in her support plan, so I printed it out with bright colour paper and laminated and showed it to the staff in the meeting.”

  • She takes the initiative to seek person-centred collaboration with other services

“Now I’m contacting communication coordinators in day programs, so they can share with us our peoples’ communication plans.”

After training, what else?

 The Regional Communication Service supports all Communication Coordinators (new or experienced), including:

  • Quarterly full day training and collaboration meetings
  • Phone and email support
  • Site visits
  • Whole service or other training or consultations

Staff at quarterly meeting

Christine Lambie has worked in a Castlemaine day service for many years. She trained in the early years of the Network and is still a Communication Coordinator.

She says:

“The Communication Coordinator Network has made a significant difference to the way we support participants at Windarring.”

Here’s why:

  • All the staff at the Service get to learn about communication support

“With Regional Communication Service-trained Communication Coordinators at three of our sites, all support staff have been made aware of the benefits of communication (including sensory) support for people with complex needs. “

  • Many communication aids and strategies are provided

“Communication support we provide includes documents presented in Easy English format, Key Word Sign training, development of Choice & Request cards, sensory support plans, personal communication dictionaries, behaviour support strategies, communication evaluation using the Checklist of Communication Competencies,  ‘Book About Me’, ‘Talking Mat’ and  ‘Chat Book’ tools, introduction and instruction on electronic aids, and specialized training sessions.” *

  • People with disabilities benefit

“Countless participants have grown in confidence, independence and social and emotional wellbeing as a result of this support.”

  • Communication Coordinators learn and get support through the Communication Coordinator Network

“Networking with Communication Coordinators from other services provides unexpected ideas, solutions and support.”

Deep roots: New growth

Over the years, Southern Loddon Mallee Regional Communication Service has trained and supported approximately 250 communication coordinators.

At any one time, there are about 60 Communication Coordinators in the Network.

Not everyone who trained is still in the role. Many have moved into management, NDIS-related roles, or other positions in the disability field. Some have left the area. About 100 people trained as communication coordinators are active in the region in various roles.

This means trained Communication Coordinators (past and present) influence and build capacity in thousands of people in the region every year – people with disabilities and workers.

The Regional Communication Service has provided the necessary long term commitment to the Communication Coordinator Network. It has also provided expertise in communication and capacity building partnerships.

The Communication Coordinator Network provides an integrated and powerful collaboration so that everyone in Loddon region can communicate.

NDIS is bringing many new services into the region and is changing the context and nature of disability support work. There is lots more to do!

*Want to know more about some of the communication strategies Chris mentions? Enter them into the “search” box here: www.scopeaust.org.au

 

 

Ordering Lunch – From “potluck” to “easy” with Visual Menus

Gippsland Regional Communication Service is working with Cells Café in Bairnsdale to increase communication access.

Cells Café is a social enterprise creating employment opportunities for people with disabilities in East Gippsland.

The café has a strong commitment to everyone being able to participate. It is working towards being awarded the Communication Access Symbol.

As part of the process, communication access at the Café was informally assessed by Frank Powell, a local man with a disability. Frank has completed training in communication access.

During Cells Café’s communication access journey, there have been many positive changes. Mel Newcomen (Gippsland Regional Communication Service) and Frank reflected on what has happened so far.

Mel Newcomen (Gippsland Regional Communication Service, Scope) and Frank Powell with the visual menu

Frank thinks the visual menu has made the most difference. Frank said that he could only make “potluck” orders the first time he visited, because the menu was only in written format.

 

The original menu

He suggested the menu could include photos of the food, so more people could order independently.

The Café added photos of the food with the prices. They also changed the format from trifold to A4 pages, which is more accessible for people with low literacy and for people who use one hand to open the menu.

The improved accessible menu

When Frank returned to the Café after the changes had been made, he found “they have done a good job.” Mel asked if Frank could order what he wanted this time. “Of course I could, easy”, Frank said, smiling.

Visual menus are a small change that have a large impact on communication access. More people can order the food they want and participate in our community.

Visual menus can make the  difference between getting a “potluck” lunch to choice being “easy”.

 

Mel Newcomen, Speech Pathologist, Gippsland Regional Communication Service, Scope

Chancez café

There is a new and exciting communication friendly café in Epping called Chancez.

Araluen, an organisation providing services to people with intellectual and other disabilities, has been involved with the North West Communication Coordinators Network for about eight years. As part of the network, teaching support workers an understanding of how to use visual supports and augmentative strategies to help people manage communication and literacy difficulties has been important. This can be seen in practice with the café Araluen has set up to provide employment for some of their clients.

Working in a café calls for many skills, the obvious being making coffee and serving customers. Behind the scenes there is a much wider range of challenges – working the register, managing the food on sale and adhering to safe food handling practices, managing money and giving correct change, keeping things clean and organised, ordering new supplies and the right amount of them . . . and so on.

All of these activities involve communication in a range of forms. Having an intellectual disability can compromise a person’s communication skills, and so the café needs to have many systems in place to support the staff to run it well. This café certainly has that!

The clients involved were initially enrolled in a food handling course (which included barista training), but while this gave them some technical skills, they had no opportunity for developing customer service skills. Working at Chancez café gives them the practical experience needed to work in more mainstream settings.

Leigh, the manager of the café, has worked with the staff/clients to problem solve ways that they can manage all the tasks required, including adhering to all OH&S and safe food handling guidelines relevant to running a café.

She worked with the team at Ordermate to adapt a POS (Point of Sale) system for the order register so that it is largely picture-based. Staff can see photos of the range of drinks on offer, and can select the appropriate picture to put through the order. There are plans to expand this to include the food items for sale. It has images of coins and notes to help staff work out how much change to give the customer, and many other things. And Leigh hasn’t “dumbed it down” for the staff. The café offers ALL the possible varieties of coffee drinks (and there are many!), several different milks (eg. soy, almond, low fat) as well as a range of teas.

The system for the ordering process is largely picture based. Staff can select the appropriate picture to put the order through.

The coffee machine is labeled for the range of different drinks, and staff learn to match the docket with the coffee machine and the correct cups/glasses for the drink are stacked near the label. There’s even a picture system to use the correct milk from the range on offer!

 

Clear labels on the coffee machine guide staff to make customer orders

Other picture/photo/object based supports include:

  • a colour guide for the different cloths associated with different activities eg. “blue cloths for milk wand and jugs only”; “red cloths for dishwashing only”.
  • a photo guide for the range of jobs to do and a system to indicate when the job is done
  • colour-coding for food and drink categories
  • another colour-coding system to manage the expiry date of the food that hasn’t been sold
  • using milk container lids and labels to help buy what’s needed at the shop down the street

Clear colour labelling of cloths guide staff through the cloths used in different cleaning processes

There are many other systems supported by pictures/photos and objects – too many to mention here. You’ll just have to go out to the Multi-Cultural Hub in Epping and see for yourself!

The Multi-Cultural Hub hosts many community and disability specific services and is frequented by people from a wide range of cultural backgrounds, often with little skills in English; such a communication accessible café is perfect for them!

The skill and confidence of the staff have grown. One person, with a stutter that would stop him talking to people, can now order supplies on the phone. Another used to speak so softly he was often inaudible, but has learned that he needs to speak louder for customers to hear him. One man has taken on the role of mentor and has begun to support other staff who may be newer or less skilled.

Chancez resonates with a strong ethical base. They have a pay-it-forward system, where a customer can pay for two coffees – one for themselves and the second for someone else who may not have the money for it. Little Things, a social enterprise coffee roaster supplies the coffee and left-over food is donated to those that need it.

New products such as Gingerbread People are already in motion at Chancez cafe’

Plans for the future include making food (gingerbread has been recently on offer for tasting), and extending the visual supports to include photos of regular customers linked to their usual order on the order register. Staff can then start making a customer’s preferred drink as soon as they walk in the door!

This is an inspiring example of capacity building through a comprehensive and continually evolving use of visual supports and augmentative strategies. These strategies enable people with intellectual and communication difficulties to perform a wide range of tasks successfully, leading to a growth in their confidence, skill and personal capacity.

Congratulations to Araluen for its vision, Leigh for her innovative use of visual supports and continued problem-solving, and most of all, the staff for their ongoing learning and for giving great service!

Chancez has recently been featured in a range of media including the Epping Star newspaper and on Channel nine. Check out the links below for more!

Chancez Cafe’ facebook:
https://www.facebook.com/pages/Chancez-Cafe-Epping/1557866297854283

Epping Star:
http://www.starweekly.com.au/news/epping-cafe-gives-people-with-disabilities-a-chance-to-succeed/

Channel 9 online:
http://www.9news.com.au/national/2016/07/28/11/29/melbourne-cafe-gives-staff-members-with-intellectual-disabilities-a-chance-to-thrive

Libby Brownlie
North West Regional Communication Service

Value our volunteers: equipping them with the tools to engage people in local communities

As a student Speech Pathologist one of the many aspects of my placement with the eastern regional communication access network was to present at training workshops for community volunteers. The first training session was for community volunteers in the south-eastern region and the second training session was for community visitors who visit people with disabilities in residential housing and advocate for their needs if they can’t speak up for themselves.

1

Key Word Sign training

The first training session involved volunteers from varying cultures and backgrounds. Some volunteers were working with people with disabilities on a regular basis and wanting to learn more strategies to improve effective communication. The others in the training worked with a range of people from those with mental health issues to people who were socially isolated. The content of the training included practical strategies for improved communication with people with communication difficulties, an explanation and discussion of Augmentative and Alternative Communication (AAC) and an introduction to the communication access symbol and what it represents.

Many people were also very interested in key word sign and what it is and learnt some helpful signs too! The volunteers were shown different AAC devices including low tech, paper based devices as well as some electronic AAC devices. There was a lot of interest surrounding the different devices and what were the possibilities with someone using these devices.

2

Listening to Those Rarely Heard is a training package designed to guide supporters of people with severe to profound disability through the supported decision-making process.

The second training was for community advocates who were eager and enthusiastic to be given the training opportunity and therefore keen to learn new information. All of the advocates visit people with disabilities in their homes regularly. Many are individuals with severe intellectual disabilities where determining their preferences and concerns is very difficult. The presentation included an overview of communication, an introduction to supported decision making (Watson, 2013) and introduction to the concept of “Talking Mats” (Joan Murphy) as a potential tool for people who would benefit from structured conversation.

This group had indicated they would like to use a tool to gauge an individual’s situation and concerns so they could be better at advocating for the person. They were interested in how structured conversation may be a way of discussing meaningful topics that may require advocacy (e.g. living  arrangements, diet, activities).

These volunteers had an impressive understanding of how their client’s communicate and explained how they were able to differentiate between subtle differences in vocalisations, facial expressions or body language. The training was very well received and they were keen on doing further training particularly in applying Talking Mats to specific clients who may be able to use it and benefit from more detailed discussion around how they wanted their life to be.

3

Talking Mats in action

All the volunteers responded with positive feedback and were very happy to have upskilled their abilities. It was very encouraging to know that there are very competent people willing to volunteer their time and who are eager and willing to be a part of change for individuals and their communities.

By Bethany Simons                               Supervised by Bron Jones
Student Speech Pathologist                Eastern Regional Communication Access Network

Watson, J. (2013). Listening to those rarely heard: Supported decision making in this brave new world of individualised services. Paper presented at the 11th Biennial AGOSCI conference, Sydney, Australia.

Craig and Gonda’s stroke story; our journey so far

I am Gonda, Craig’s long term partner and this is our story of loss, grief, acceptance, hope and love.

Craig and I had a whirlwind romance. We met in the Melbourne Casino almost 16 years ago. Following a lunch date the next day, we spent the whole week together. Craig lived in Darwin (NT) at the time where he owned a manufacturing business producing solar hot water systems and water tanks. He would supply and install them predominantly in the Aboriginal communities in Arnhem Land.

before-craig-gonda-murray-river-inlet-near-house-2011

Craig & Gonda at the Murray river inlet near their rural property – 2011

The day before his return to Darwin, he asked me to marry him – to which I answered YES. I moved up to Darwin five weeks later with my then three and a half year old daughter to be with Craig. After almost four years we moved to Perth (WA) for a few years to follow business opportunities and have spent the last 10 years in Albury (NSW).

before-craig-brooke-daughter-wedding-danielle-2011

Craig & Brooke (daughter) -2011

Craig was born and bred in Perth (WA) where his family resides and has gone for yearly holidays to see his family since March 2015. This year he was there when his (only) daughter delivered healthy twin girls. To catch up, we regularly FaceTime with his daughter and her husband, the twins, his older grandson (4) and granddaughter (2). He also Skypes with his mother (and does speech practice with her as well), dad & stepmum, sister and brothers on a regular basis.

Craig was very entrepreneurial in his working life. He started his first business, a travel agency, at the age of 18. He then entered the renewable energy industry where he was always at the forefront of new developments.

After moving to Albury, he started the Planet Power renewable energy shop, which he quickly developed into a franchise with 9 shops in Australia’s regional areas. Business didn’t always go to plan, but Craig had the ability to quickly pick himself up and move on towards bigger and better projects.

Prior to his stroke, he had taught himself how to calculate major renewable energy saving solar-wind-water installations for large multinational companies and was very successful at selling these. He was always a salesman at heart and always so motivated and determined to make his working life a success; not just for the economic pay off, or prestige, but for our dream – to help disadvantaged communities in countries like Africa with their water and energy supplies.

In 2011 when we first sent wedding invitations out and the whole event was organised, Craig had a heart attack. Then in 2014 we again planned to wed, but quietly this time around – our world turned upside down.

On 20 January 2014, when he was 53, Craig had a major bleed in the lining of his brain on the right hand side (haemorrhagic stroke). Transported to the Alfred hospital in Melbourne, he was operated on the following day to remove part of his skull to relieve pressure from the blood build up on his brain (surgical decompression). Craig’s skull bone was successfully put back in place (cranioplasty) on 10 February 2014.

during-1-craig-following-the-removal-of-the-ecmo-after-haemorrhagic-stroke-major-heart-attack-feb-2014

Craig following the removal of the ECMO (after haemorrhagic stroke & major heart attack) – February 2014

The following morning on 11 February 2014 Craig suffered a major heart attack (VF arrest and STEMI). An angiogram with balloon angioplasty came next where they used a small balloon at the end of a catheter to open the narrowed arteries and he was connected to the ECMO (that cleared his blood of carbon dioxide and replenished it with oxygen outside his body to then pump it back in through large tubes inserted in both his groins, because his own heart was too weak and needed to recover) and kidney dialysis machines, amongst a lot of other lifesaving machines. Craig was still critical until 14 February 2014 when they disconnected him from the ECMO in a 6.5 hour operation.

On 11 March 2014 – only 4 weeks later – Craig suffered a massive stroke in the left lobes of his brain. The ischaemic stroke (left parietal-temporal infarct) was due to a dislodged blood clot from his heart. He was then transferred to Caulfield rehabilitation hospital (Melbourne) to start intensive rehabilitation on 28 March, 2014. Another month on, Craig arrived at the Albury rehabilitation hospital (NSW) on 29 April 2014 and was finally allowed home on 14 August 2014.

As a result of the ischaemic stroke Craig was left with serious impairments including right sided weakness (right hemiplegia) and severe expressive speech deficits due to aphasia and dyspraxia, because of the damage caused to the left hand side language centres of his brain.

– Aphasia is a language disorder that affects speaking, writing, reading and understanding the spoken word

– Dyspraxia means that the link from the brain to the mouth muscles is affected. Craig may know exactly what he wants to say, but cannot sequence his mouth muscles to move in the right manner to speak the right word/sentence.

The first 3 months of 2014 were simply put; absolutely horrendous! With my emotions ranging from complete despair, when Craig was on full life support for more than 24 hours following both the haemorrhagic stroke and the major heart attack, to total elation when against expectation he pulled through and recovered remarkably from both these medical emergencies. To then have my world and our life as I knew it, entirely shattered when Craig had the major left sided ischaemic stroke. The first time I saw him after this stroke he could not do or say anything, but wipe my many tears away with his functioning left hand.

during-2-craig-2-days-after-the-ischeamic-stroke-march-13-2014

Craig one day after the ischeamic stroke – March 2014

Thankfully 8 months before Craig’s many medical events in 2014 we had moved from our 7 acre property to a smaller house in town. Craig had loved being on the farm though. On weekends he enjoyed using the tractor slashing the paddocks and doing all the other strenuous maintenance jobs that come with a large property. Being in town makes our lives easier and I certainly would not have had the time or the ability to uphold the property on my own.

From the time that Craig went to the Caulfield rehabilitation hospital my life truly became extremely hectic. During that first year I was living from one energy-and-emotion draining day to the next. Not only because I was so focussed on learning everything I could on how to assist Craig to recover as best as he possibly could, but also because my then 16 year old daughter had just started year 12 while going through this dramatic time on her own in Albury. She had the added stress of cooking for herself; looking after the house; caring for our cat and dog and everything else that is involved in running a household. I tried to support and provide for her to the best of my ability from Melbourne with long daily phone calls. Whenever one of Craig’s family members was able to come over on intermittent visits I jumped at the chance to do the almost 700km round trip to Albury and back. Sometimes for one night only.

I did not attend just about every speech, occupational and physio therapy session, but in the beginning Craig needed help with eating, showering, dressing and grooming with which I was involved on a daily basis. With that said, my spirit was often very high, because of the many improvements Craig was making.

The in-house rehabilitation physio therapists got Craig up and walking. At first with the assistance of three people and later down the track with just a walking stick, while wearing a splint on his right lower leg to keep his foot from dropping. The occupational therapists taught Craig how to dress and groom himself to the best of his ability with only using his functioning left arm and hand. The speech pathologists tried very hard for Craig to be able to make sensible sounds and words, and also worked on improving his reading, writing and understanding of the spoken word as well as teaching him to use other strategies (pointing, signals, writing and such) to communicate. Even though, Craig has been unable to speak in normal terms he has been very adept at being able to communicate through body language, pointing and sounds. Prior to his stroke I had always told him he was an open book to me. How invaluable it has been to always have had such a close relationship, so today we can still communicate on a deep level.

On Craig’s return home he continued with weekly speech and occupational therapy at the community rehabilitation. He had Botox injected (August 2015) in his right arm to immobilise the muscles that turned his arm and hand inwards and upwards towards his chest (due to spasticity of the muscles) and to then have the opportunity to strengthen the opposite muscles. We did intense training exercises for about 5 months at home and now Craig can; for instance: use his right arm and hand to mow the lawns and change the catcher by himself, play pool and can often use his right arm in a supporting bilateral role when doing something with his left arm and hand. This greatly improved his independence and importantly his sense of contributing.

Verbal speech did not progress (despite countless attempts) until Craig went for his first holiday to see his family in Perth in March 2015. He was taken to see a speech pathologist and she convinced and motivated him that he could learn to speak again if he spent two to three hours a day rehearsing words and short sentences with me. He came back to Albury and for the first time since his ischaemic stroke he was able to copy me saying whole words. Prior to this, Craig had trouble to control his mouth muscles to copy movements for simple vowels such as the letter E.

Following 3+ months of practicing like this, I developed (with the help of a speech pathologist) a program to sing some of these the sentences together (MIT – Melodic Intonation Therapy) to engage Craig’s right side of the brain were oppose to speaking (left side of the brain) the ability to sing is located. This proved to be more successful. Later on I made a booklet (and a large collage at home) with photos of the mouth movements of letters within the target sentences, in the hope that Craig could instigate the sentences by himself without my help of modelling the movement of the mouth. During that time he slowly learned to say: “Hi, Yes, Come here please and Thank you”. The last time we attended the community rehabilitation (November 2015), following months of daily practice, Craig was able to say: “Hi” to everybody! That was very special.

At the beginning of this year (2016) we started weekly speech sessions at the Speech Clinic at a local university, which offers speech pathology students (under supervision of a very experienced speech pathologist) a chance to interact and assist people with communication issues. This has been very beneficial for Craig. Through various different approaches, and lots of home practice, Craig’s reading, writing and understanding of the spoken word has improved significantly. His speech has progressed that he is now able to say independently: “Good thank you” and “How are you?” when someone asks him “How are you” first. We achieved this by teaching Craig (on advice and with assistance from the Speech Clinic’s speech pathologist and student) to focus on the sound of the starting letter of the first word instead of solely on the placement of his tongue and lips. Craig and I are very excited to find out where further Speech Clinic sessions may take his speech development in the future.

We are also keen to start swimming practice in the warmer months, which on our request was developed by a community physio therapist (unfortunately, at the moment the indoor pool is not suitable for Craig to get in or out off). This will again stimulate his right arm and leg and together with his twice weekly gym sessions it will also benefit his fitness. Craig also really enjoys his twice weekly respite outings to a rural pub (Bethanga, Victoria) to catch up with his mates. They have really taken him in and he is included in all their banter and laughter, which is truly heartwarming.

We are involved in a weekly singing group, the monthly local Stroke Recovery group and the Cuppa & Conversation group, which have been really great to make new friends with people who are in similar circumstances. Especially since so many lifelong friends have gone silent and stayed away. In downtimes, Craig and I love nothing more than to follow the AFL footy on television and on occasion in Melbourne. In summer, he likes watching the cricket on the television outside from our inflatable upright pool.

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Post stroke Craig and Gonda at the MCG watching an AFL game – June 2016

In future, our goal is to recover more function in Craig’s right arm and hand and to develop Craig’s independent speech further. Craig’s dream is to be able to drive a car again and to work in some meaningful capacity. Likewise, I would also like to participate in employment.

Craig is also very interested in being a participant in clinical trials of dental pulp stem cells transplant, bone marrow transplant and/or perispinal etanercept injections. The latter is not available in Australia as yet, but is obtainable in the US and it is my aim to set up fundraising to be able to have this procedure done.

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Craig & Indira (stepdaughter) – October 2016

Thankfully, Craig has still got his positive outlook and his wry sense of humour. Every day we experience – or one of us does something – that has us just about rolling on the floor with laughter. Yes our life now is completely different and rather challenging at times, but following the losses and the feelings of grief we reached acceptance fairly quickly. It is what it is. Hope, but especially our love keeps us going onwards and upwards.

 

By Gonda with the assistance of Craig

Supporting Horsham Rural City Council

In July 2016 Grampians Regional communication service was involved in a new initiative with Horsham Rural City Council. Horsham rural city council approached Grampians Regional Communication Service to be a part of their newly updated disability action plan. This action plan identified communication and disability awareness as an area for future training and support for the council. GRCS and Horsham Rural City Council combined forces to develop suitable training that was aimed at the following three key areas;

  1. Helping staff get a better understanding of the issues for people with disability
  2. Building staff confidence with communication when working with people with disability
  3. Providing staff with information in relation to creating a more inclusive environment for people with a disability.

horsham-city-councilThe communication and disability awareness training was run by Grampians Regional Communication Service over a series of workshops spread over two days. 150 participants attended the training with the content focused around building staff member’s confidence in communicating with people who have little or no speech. Staff members ranged from people working in customer service, management positions, information technology, engineering, home care as well as the local counsellors.

Overall the training was very successful leading to several other councils within the region expressing interest in training. Pleasingly there have also been several requests for further information in relation to communication access and in October it is anticipated Horsham Rural City Council will receive further training in relation to making their service more accessible to people with complex communication needs.

By Megan Nestor

Grampians Regional Communication Service