Understanding the Needs of Families

• Understanding the Needs of Families

  
  

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    In this topic we will cover:

    • The relationship between family and practitioners
    • The importance of the family in relation to AAC assessment
    • Understanding needs and concerns
    • Environmental context and support

  • Understanding the potential AAC user's environment

    It can be extremely hard for a family to cope with all the demands that come with having a child who may have complex communication needs, usually alongside other disabilities impacting on sensory, physical and / or cognitive abilities.   

    The early years can be spent visiting hospitals, clinics and specialist centres, learning about possible outcomes from different professionals.  But nothing is more important than building a relationship with the family so there is mutual trust.  When there are siblings around it can be an overwhelming challenge for those in close contact with the non-verbal child, to make extensive use of all the aspects of AAC that need discussing.  

    It is vital that there is an understanding of the needs and concerns of parents and close carers, with an awareness of the environment in which the child is being brought up.  

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    Activity - Understanding Families

    Take a moment to consider some of the concerns parents may have before an AAC Assessment.  The notes on the flip cards are based on research carried out with families of AAC users by David McNaughton and colleagues in 2008: “A child needs to be given a chance to succeed”: Parents of individuals who use AAC describe the benefits and challenges of learning AAC technologies. 
  • AAC Assessment and the Community

    Explaining how an AAC assessments works and what you hope to achieve with it is very important

    Here is an example of an American  Speech Pathologist telling her local community about an AAC Assessment. There is a transcript available
    

    
    

    Here are some ways that you could use to help your community understand AAC

    Ideas for spreading the word

    What	Where	How
    Leaflets	Doctor's surgeries Family clinics Hospital waiting rooms Schools House departments	Simple paper based version with clear text and images - Make the electronic version available on a website - Make sure it is available in several different formats such as doc, pdf and html so it can be used by everyone.
    Local Radio	Organised by local station	Get to know the journalists and offer an introduction and possible FAQ session. Try to find time to have a regular slot with a commentator so that you gather momentum over time.  Have different experts discussing the different topics.
    Blog	On your website	Start generating interest by writing articles and linking to other blogs.  A good example is Carole Zangari's 'PrAACtical AAC'
    Use Social Media	Use online collaborative tools e.g. Facebook accounts etc	Share the burden of updating between colleagues and try to keep it all up to date with links to events etc.
    Face to Face	Local/National and International	Nothing really beats face to face - making yourself available whenever possible to share your knowledge.  Local open days in schools, clinics and parents' meetings.  Taking a table at a local event with lots of simple activities on show - free ideas and easy to make games.  National and International conferences are harder to do and take more time, but can lead to grants and interesting knowledge building opportunities that you can share on your return with families and colleagues

    
    

    
    

  • Activity - sources of support to families

    There is a real need for families to have information and training on how to use AAC with their child and within their family: although families are experts regarding a child, families and caregivers are not always expert in the effective use of an AAC but who delivers this training?

    
    

    In your reflective journal name five individuals who might be needed to support the family when training is needed to use an AAC device and provide the reasons. 

    
    

  • Family members involvement

    Family members have been recognized as the most significant communication partners for children and credited with helping their children to achieve their communication potential (Huer &Lloyd 1990). However, it is important not to put pressure on siblings and to make it fun rather than a chore.  

    Let’s watch this video. Do you think that this sister needed any training to support her brother?  Is there too much expectation? Transcript available 

    It can be hard to implement AAC into family routines, hard to constantly teach everyone to model what is being said whilst dealing with everyday activities.    But it is important to try to encourage some planning before a parent asks questions similar to the ones below …

    • What am I expected to do?
    • How much am I expected to do?
    • How will I know when I’m finished?
    • What will I do next?

  • Summary 

    Working with families can include relevant effective early intervention practices. Here are some of the items we have covered in this topic:

    • Family - emotional well being and relationship effectiveness to encourage communication
    • Instructional  – aided modelling, requesting, prompts with careful language support.
    • Interactional  – flexible, responsive; recognising family strengths and vulnerabilities
    • Natural Environments -  at home and in school - working in the context of normal routines 
    • Positive Behaviour Supports - consider resources, routines and expectations of a setting, as well as AAC user skills, preferences and values of extended family 
    • Transitions – aiming for generalisation across settings e.g. outside school or with unfamiliar peers

    
    

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    Further Reading 

    • Dunst C.J., Espe-Sherwindt M. (2016) Family-Centered Practices in Early Childhood Intervention. In: Reichow B., Boyd B., Barton E., Odom S. (eds) Handbook of Early Childhood Special Education. Springer, Cham
    • Hecimovic, A., Powell, T. H., & Christensen, L. (1999). Supporting families in meeting their needs. In D. B. Zager (Ed.), Autism: Identification, education, and treatment (2nd ed., pp. 261–299). Mahwah, NJ: Erlbaum.
    • Huer, M.B. and Lloyd, L., 1990. AAC users' perspectives on augmentative and alternative communication. Augmentative and Alternative Communication, 6(4), pp.242-249
    • Marshall, J. K., & Mirenda, P. (2002). Parent-professional collaboration for positive behavior support in the home. Focus on Autism and Other Developmental Disabilities, 17, 216–228.

    
    

  • Reflective Journal 

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    Journal

    Reflective Journal - Offering support to the family

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  • Presentation slides

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    URL

    Understanding the needs of families: The role of the extended family URL

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    URL

    Direct Access & Pointer Control URL