Annex 4: Suggested methods for gathering evidence and consulting people
Participants put forward a range of specific suggestions for how the review should gather evidence and consult people. These included:
- Face-to-face methods including consultation events and workshops, conferences and road shows - these were all seen as useful for allowing meaningful dialogue, exploring views and experiences, and engaging with those with learning disabilities in particular
- Engagement techniques such as World Café discussions, wish trees, post-it notes, idea walls, etc.
- Interactive methods and activities using theatre, video, or drawing
- Focus groups / small discussion groups - with the caveat that this could be a resource-intensive method with success depending on adequate input and preparation from skilled facilitators
- Visits to services, including hospitals and advocacy services
- Surveys - with specific calls for these to be simple and widely circulated
- Online methods including: online surveys - seen as particularly useful in engaging those with autism, and getting input from professional groups - and social media
- Impact statements, (recorded) oral evidence sessions and case studies
- Submission of written evidence
- Literature reviews, with the aim of capturing information about alternative service models and legislation in other jurisdictions.
Participants were asked for their views on any practical issues which would need to be addressed to ensure that the review was carried out successfully.
Comments addressed the following issues: information and communication requirements; 'environmental' factors; location and timing of meetings and events; format of events; support needs; expenses. Key messages - explicitly or implicitly stated - were about the importance of: (i) accessibility, (ii) sensitivity to the needs of different groups and individuals, and (iii) actively facilitating the inclusion of all those who wished to contribute to the review whether they be individuals with a learning disability or autism, or their families or carers. Respondents emphasised the need for the review to adopt a flexible, 'person-centred' approach allowing individuals to engage in the process in a range of ways.
Involving those with learning disabilities and autism, their families and carers and / or groups representing their interests in the running of the review and the planning of review activities was seen as one way of ensuring that the needs of potential participants were catered for.
Information and communication requirements
Accommodating the very varied information and communication needs of potential participants was seen as crucial to the success and legitimacy of the review. At a general level participants stressed the need for: (i) information to be available in appropriate formats for those with varying levels of understanding, and (ii) support to be available for those with intellectual and communication difficulties to help them understand issues and convey their views. More specifically, participants commented that the review would need to incorporate or accommodate:
- Easy Read, user-friendly written materials (for all participants, as well as those with learning disabilities - some argued that material should be 'easy read' as standard, with more detailed information available as 'add-ons')
- The development of clear questions and the use of appropriate methods for explaining abstract concepts
- Use of communication aids such as Talking Mats, Alternative Augmentative Communication systems, emotion cards, DisDAT (Disability Distress Assessment Tool)
- The use of visual aids and media such as story boards, video and theatre.
Participants called for the involvement of appropriate organisations (e.g. SCLD) and professionals (e.g. speech and language therapists) in developing consultation formats and materials.
Location and timing of meetings and events
The location and timing of events were significant issues for respondents, particularly those responding as family members or carers of those with a learning disability or autism. There were calls for events to be held across the country, in local communities and in locations with good transport links in order for them to be easily accessible to a wide range of people. The time, cost, inconvenience and challenges of travelling to (unfamiliar) locations were all seen as potential barriers to participation. Further, people thought that holding events in local areas could be helpful in demonstrating a commitment to hearing the views of all sectors.
With regard to timing, respondents highlighted the need for events to be held at a range of times - and for adequate notice to be given - to fit in with different work and caring commitments, and to ensure the process was not biased towards those attending in a professional capacity. Offering a range of timings was also seen as important for those with learning disabilities and autism whose concentration levels may vary through the day.
Venues and 'environmental' factors
Participants also had clear views on the types of venues which might be used for meetings or events, with two main points made. Firstly, they stressed the benefits of holding meetings and events in informal settings where people would feel safe, secure and at ease; holding events in familiar venues and collaborating with local groups in running events was also seen as important by some in this respect. Secondly, they highlighted that venues should be accessible for those with physical disabilities and, crucially, should offer low sensory environments and separate spaces for those who may need time away from the main event.
Format of events
Participants raised a number of practical issues related to the format of events and meetings.
On duration of events, there were two views: (ii) that events needed to incorporate sufficient time for people of all abilities to consider and understand issues, and formulate their response, and to receive assistance with this if required; and (ii) that events needed to be short and focused. It was also suggested that people should be given advance notice of what to expect at events and given preparation time beforehand.
The importance of skilled facilitation provided by those with experience of working with the target groups was also noted.
The point was made that participation in the review might be encouraged by using existing events or group sessions to engage with people, or including a social element such as lunch / refreshments / bingo / music.
Participants stressed the importance of providing support to individuals with learning disabilities and autism (and others) to allow them to take part fully in the review, with most discussing this issue in the context of face-to-face meetings and events. Support was needed to help people understand and consider concepts and ideas (in preparation for, and at events) and to help them develop and contribute their own views. For some this meant ensuring that individuals could attend events with family members or carers; others mentioned the need for input from skilled facilitators, speech and language therapists and psychologists.
Some people commented that those affected were best placed to know their support needs - the involvement of local groups and organisations in organising and facilitating events was seen as helpful in this respect.
Some participants pointed out the financial implications of attending events, and suggested that the expenses should be provided to cover costs incurred in attending events (travel and subsistence, care arrangements). Some also noted that family members were often self-employed or worked in contract jobs in the care sector and suggested the review should compensate people for lost earnings. There was concern that without such financial support, the review would not hear from all sectors.