Good Practice: Digital communication for young adults with multiple disabilities

Case from the Marie Homes in Denmark:

1) What is the name of this service/practice/project or what name would you give it?

‘Digital communication for young adults with multiple disabilities’defines a practice, which covers most of the pedagogical work at the Lykke Marie Home in Slangerup in Denmark. It is one of our defined goals to become a leading provider of Augmentative and Alternative Communication (AAC), including digital communication for young adults with multiple, profound disabilities. It is a digital communication form that is based on high-tech solutions and research in artificial intelligence (AI). Individuals with very limited or no speaking ability need other means of communication than speech to be able to say what they want; when they want it; and to whom they want. Therefore, their access to AAC is crucial for their participation in and quality of life. As the Danish chapter of ISAAC (International Society of Augmentative and Alternative Communication) states:

“It is in communication with other people that we get the opportunity to create our own ‘self’ – a ‘self’ that is different and separated from others. Being regarded as an independently thinking and acting human being is a fundamental human need – and thus a fundamental human right.”

This shows how important it is to focus on communication working with people without speaking ability, which is the case for the young adults living in the Lykke Marie Home. Therefore, we prioritise AAC – especially the digital communication forms – as we have learned what positive effect this communication form has had on the young adults’ quality of life and influence in their own life.

2) To which dimension of QoL does the practice contribute?

Jonas Rønhøj is one of the young adults living at the Lykke Marie Home. In an article in the Danish magazine, Socialpædagogen (2019), his example clearly shows how the use of digital communication in everyday life is a success story that other social service providers in Europe should be inspired by. The use of digital communication contributes to the young adults’ quality of life in these dimensions: self-determination, personal development, interpersonal relationships and social inclusion. This is what young Jonas, his parents and network, and the staff around him at the Lykke Marie Home have learned using digital communication in practice.

Jonas is 24 years old and a resident of the Lykke Marie Home in Slangerup in Denmark. He has no speaking ability, reduced hearing ability and can only move one hand. Despite of these disabilities, he is a competent user of social media and digital communication means. Jonas’ mother, Pia Rønhøj, has experienced these competences as a way to better his quality of life considerably. Pia says:

“Jonas has a social network that he could never had had without these media. They provide him a way to keep relations to the people that mean the most to him. He can call on his own to his family and former helpers. That he can reach out to the world by his own means is a huge gift.”

Jonas uses his iPad to communicate. With the app Avaz, which is a symbol-controlled communication app to e.g. people with autism, Down’s syndrome and Asperger’s, he can tell his surroundings about his needs. Avaz is dialogue-based and encourages to conversations between Jonas, his family and helpers. But he also uses independent video communication via the app FaceTime to call his family and friends; and he can put pictures and videos on Facebook by himself as well. Pia continues:

“We have reached contact to Jonas at a completely new level. The communication means have helped him to grow cognitively. Especially when we started using the social media and FaceTime, we managed to build a new relation to him.”

It is examples like Jonas that make all of us at the Lykke Marie Home fully aware of the need to consistently work and practice with digital communication with all the residents. Because this communication form has such a huge influence on the young adults’ quality of life, it needs to be integrated in their day-to-day life as all other professional support and care tasks.

3) Would you consider the example as ‘an innovative way of working’? If so, why?

Working with digital communication everyday at the Lykke Marie Home is certainly a very innovative way of working. Previously, other forms of AAC (like Signs to Speak (Tegn Til Tale in Danish) and pointing at symbols) were mostly used, but today digital communication is a good option. Complex flows of information, social media, platforms and new technologies fill up a central part of the everyday life of Danes today – and create new challenges and opportunities for both the individuals and the society at large. Therefore, digital communication solutions are important to integrate into the lives of people with (multiple) disabilities, as they also should have the option to become digitally literate and live in a way that reflects the day and age, they are part of. It is highly important, though, to view digital communication as one of many augmentative and alternative communication forms. In order to achieve as efficient a communication as possible, you need to use a broader array of augmentative and alternative communication strategies (ISAAC Denmark 2020). Digital communication can therefore in general not be the only tool you use – and can never replace the care, pedagogical support and communication that happens in the physical meeting between people. But the digital communication form is without a doubt an innovative approach that opens up many new roads in the pedagogical field in working with young adults with multiple disabilities, as it can provide space for communication and relationship building - independent from time and physical setting.

4) In what way does the practice lead to ‘inclusion of service users with a profound disability’? Please explain how you have understood and defined ‘inclusion’ in this context.

’Newer’ digital tools give completely new opportunities for communication and thus opportunity to expand or just maintain one’s social contacts. Most people can contact whomever they want, but it is the opposite for people with profound disabilities. This group is often dependent on others to take initiative (LEV 2019). Most of our work with digital communication is still based on the staff of the Lykke Marie Home taking the communication initiative, but there is today better chance of social inclusion as the young adult himself/herself can contact friends, family and others, as we saw in Jonas’ example. Digital communication is thus also a way of diminishing social isolation of people with profound disabilities. Likewise the young adult has gained larger influence in her/ his own life where the young adult can express and act on her/ his own needs and wishes – in a way that was not possible earlier.

5) What would be, in your opinion, the opportunities and challenges to transfer the practice to the partner organizations?

There are both opportunities and challenges in transferring/ implementing digital communication in practice to other European partner organisations/ service providers. As previously stated, we live in a digitalised society with many accessible technologies. The opportunities of getting an iPad and be connected to the Internet is possible in most parts of Europe. The high-tech solutions are also becoming cheaper – compared to earlier when technology was markedly more expensive, and people’s motivation to work with new technologies is often that it is innovative and exciting to communicate in this way. We have learned that when a staff member has tried this communication form, then the staff also realizes that it gives access to the young adult’s inner universe in a completely new way. Eva Benning who is a trained social worker and Jonas’ helper at the Lykke Marie Home says,

“Digital communication is very interesting, as it is very obvious to see what difference it makes for the young adults. I am motivated to use these tools, because I get the feeling that I in this way get into the resident’s world.”

The main challenges in implementing digital communication are that this communication form can never stand alone, as AAC should always involve the tool, the AAC user and the surroundings, and these 3 factors have to be coordinated, before it can become meaningful (ISAAC Denmark 2020). It is therefore not a solution to just purchase an iPad as a support tool and believe that digital communication will then function.
The young adult has to be motivated and involved in using this form of communication in her/ his everyday life. In this regard, it is crucial that the relatives and staff seek to uncover the young adult’s needs and wishes for using digital communication. The surrounding environment (e.g. relatives and staff) also has to embrace the new technology with sincere interest and active participation. They have to help the young adult becoming a member of the various social networks – e.g. by creating a technical set-up where the social networks can be build, expanded and maintained. It is also important that the relatives and staff members have a lot of faith and patience in the young adult succeeding in using digital communications. It takes time for all of us to learn new skills – both for the young adult, the relatives and the staff. We also experience at the Lykke Marie Home that not all staff members are equally interested in the digital world. We have had to accommodate these differences as we are all unique individuals. And the less digitally minded colleagues can instead contribute with other important pedagogical interventions – until they at a later stage grow interested in the digital world. As long as there is a continued focus on the importance of digital communication and an acknowledgement of its potential, your organization develops in the right direction.
On the other hand digital communication can also be challenging for the working environment, as computers and eye-sight-controlled programmes sets high standards for the individual staff member’s technical competences. It is therefore necessary to have a consistent focus on education of all staff members, if digital communication is to be implemented successfully. The management of the Lykke Marie Home has among other initiatives made sure that all employees have been trained in AAC. This included an introduction to all digital communication opportunities for people without any speaking abilities. Even if you as an organization is fully aware of the necessity of training the staff in digital communication, it is another challenge that technology is evolving at such high speed that it can be difficult to keep pace with the developments of the best use of it. Tomorrow there might be a newer technology or a better computer programme on the market. Therefore you have to accept as a user of digital communication that this communication form is constantly changing – and that you should keep on learning more and seek to acquire the newest developments in this field. At the Lykke Marie Home, we are therefore still not fully completed in making the tools a totally integrated part of everyday life yet, but we are very focused on getting there, so we consider it an on-going process that will always be part of our development.

Spg. 6-9 – Have you evidence (proof) that the practice increased the satisfaction of the service users? If so, please show how satisfaction is measured and the increased satisfaction score.

At the Lykke Marie Home we work in a value-based manner. Therefore, we haven’t yet prioritised collecting proof, results and/ or quantitative measurements of the satisfaction level of the young adults, the relatives and staff on the implementation of digital communication and its effects on quality of life. But looking at the example of Jonas, his mother, Pia, and his helper, Eva, you can find qualitative data that are very clear. Digital communication for young adults like Jonas with profound, multiple disabilities and no speaking ability experience higher quality of life through self-determination, personal development, interpersonal relationships, and social inclusion. We therefore hope that the dissemination of our work with digital communication and the sharing of the success story of Jonas can inspire other European social service providers/ partner organisations in their work promoting communication and quality of life for people with disabilities.

References (in Danish):

DM 2019: ”Ekspertpanel: Danskerne skal dannes til det digitale samfund” på hjemmesiden, https://dm.dk/nyheder/2019/ekspertpanel-danskerne-skal-dannes-til-det-digitale-samfund

Isaac Danmark 2020: ”Hvad er AAC” på hjemmesiden, http://www.isaac.dk/hvad-er-aac/

LEV 2019: ”Digital kommunikation – hvorfor er det ikke mere udbredt blandt mennesker med udviklingshandicap?” på hjemmesiden, https://www.lev.dk/nyheder/2019/november/digital-kommunikation-hvorfor-er-det-ikke-mere-udbredt-blandt-mennesker-med-udviklingshandicap

Socialpædagogen 2018: ”Bedre sent end aldrig” på hjemmesiden, https://socialpaedagogen.sl.dk/arkiv/2018/07/bedre-sent-end-aldrig/

Socialpædagogen 2019: ”Fokus på digital nærkontakt” på hjemmesiden, https://socialpaedagogen.sl.dk/arkiv/2019/01/fokus-paa-digital-naerkontakt/