The Regional Partnership Board Children’s Sub-Group focussed on disabilities and illnesses for their meeting on 17 March 2023.
The background information they received is available to download below. It includes an information pack, presentation, and video about a campaign in Scotland which combines respite care with hospitality and the tourist industry to create more opportunities and short breaks for people with disabilities and illnesses, as well as their carers.
If you’d like more information about our approach, please see our Focus on children and young people blog post.
Reflections from the meeting
The definition of a person with a disability or illness is broad. The Equality Act 2010 describes it as ‘a person has a disability if they have a physical or mental impairment, and the impairment has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities’; because of this the information pack focusses on respite care for children and young people with a disability or illness. Respite care was also one of the priorities identified in the Population Needs Assessment.
‘Respitality’ a good practice example
During the meeting a short video was shown, produced by Shared Care Scotland: ‘Respitality’. Respitality provides a short vital break for unpaid carers in Scotland when they need it most. This is achieved by connecting carers’ organisations with hospitality, tourism and leisure businesses who are willing to donate a break free of charge.
Community of enquiry
Gill Toms, Research and Practice Development Officer at Bangor University, joined the meeting to lead the group through the community inquiry discussion. The group was split into groups to discuss the themes and topics that affect children, young people, and their families and carers in North Wales, and create a conceptual question to explore. Below are the three questions that were formed:
- Group 1: Are we using the right terminology to support and portray what is and what should be available? Does everyone understand?
- Group 2: How can we measure the value of short breaks to the wider community / society?
- Group 3: With limited resources, finances, and workforce, what are the alternatives?
The group decided to further discuss the question from Group 1: Are we using the right terminology to support and portray what is and what should be available? Does everyone understand?
The discussion focussed on terminology and the connotations surrounding respite or short breaks. For example, ‘break’ and ‘respite’ may have negative connotations. The group also explored if the terminology accurately described what is available for children with disabilities and/or illness and for their families and carers. They observed that a more person-centred approach to respite care could be more beneficial to families, rather than a blanket service that doesn’t work for everyone. An example was some families benefiting from shorter more regular breaks of only a few hours. Some members of the group described how direct payments were often more requested and needed by families so that they can choose what support they need and when. Other suggestions included exploring the opportunities available from leisure and tourism across the region and whether education staff on term-time only contracts would be interested in personal assistant work during school holidays.
The group expressed the importance in creating sustainable and consistent services for these families to make a real difference; and making sure that the information was accessible so that those that need it know what is available out there for them.
Before this focus session, meetings took place with some of the disability managers, and the learning disabilities’ transformation team, who are keen to review, and take forward some of the observations and actions developed through the discussion.
What do you think?
Are you a child with a disability and/or illness or a carer to someone who is? Do you think these are good ideas and is there anything important we’ve missed? Do you have ideas for how we can fix things, and would you like to be involved in fixing them?
Please get in touch with us if there’s anything else you’d like to share.
Disability and illness information pack