Short Break Stories

Supporting Inclusive Festivals

A story by PAMIS

We worked with a variety of festivals across Scotland to support them to be more inclusive of people with profound and multiple learning disabilities (PMLD).

As people with profound and multiple learning disabilities and their families can feel left out, on the margins of society. They identified that festivals were a great place to enjoy meaningful time together as a family. This project supported that vision and helped festivals to be more inclusive.

What Supporting Inclusive Festivals did

The project worked with a variety of festivals across Scotland to support them to be more inclusive of people with profound and multiple learning disabilities (PMLD). The events took place throughout the year at festivals identified by families as events they would enjoy together as a family.

These included a children’s festival, book festivals, Burns festivals, outdoor nature fest and a poetry festival in partnership with Stanza and Scottish Natural Heritage. The PAMIS mobile changing places toilet, the PAMILOO was available at venues that did not have fully accessible changing places toilets. This raised awareness of what was required to make festivals events fully inclusive from a practical point of view.

Multi-sensory stories were created, and sensory arts and crafts, as well as adapted games. All this ensured that accessible activities were available for people with profound and multiple learning disabilities. This meant they could meaningfully be included in the event as well as enjoy the atmosphere of the festival.

During the festivals, family carers relaxed, chatted with other families and in some cases spent time they never usually had, with extended families such as grandparents. It was lovely to see families enjoying time together. Working with festival venues was overall positive and festivals and events were glad of the support and were keen to be inclusive.

The one surprise was some of the Winter Festival events that are ran by local councils. These were not so inclusive. Families wanted to attend the Aberdeen Winter Festival event and despite talks beginning in the spring of 2019 it proved impossible. It has been identified that more work has to be undertaken with local authorities across Scotland to make their festival events more accessible and available to people with profound and multiple learning disabilities and their families.

This was the only barrier to report. Overall, the project was a great success.

What PAMIS has learned

This project has enabled PAMIS to reach out and engage with new families in areas where there is not a PAMIS Family Support Service. As an organisation this has shown us we can reach out to families through festivals and events and this has led onto new relationships and partnerships across Scotland.

Developing new short breaks activities. The project demonstrated there was a further need to design resources that could help local events support people to have a great day out when the festival was over. This project outcome has made a significant contribution to securing other sources of funding to continue to develop resources for venues across Scotland.

How PAMIS has benefitted from the funding

The benefits from the funding have been numerous. The project supported PAMIS to build relationships in other areas and we now have a staff member in post in Dumfries and Galloway. The project certainly helped to make PAMIS visible in areas where there is no family support service. It supported us to secure funding in Dumfries and Galloway therefore building increased capacity to support families in that area. It supported PAMIS to improve social inclusion and understanding of people with profound and multiple learning disabilities. It opened the door to awareness of people with profound and multiple learning disabilities and their families.

Project Outcome

That families attending the festivals will report that they had an enjoyable time and that the festivals participating in this project will know how to make their events fully inclusive in the future.

Results

This outcome was fully achieved because the festivals worked in partnership with PAMIS to ensure that people with profound and multiple learning disabilities were fully included. Accessible and meaningful activities, were provided, along with the presence of the mobile changing places toilet where necessary. Families spent time together, spent time with other families and generally had a great time at all the festivals. People with profound and multiple learning disabilities enjoyed the atmosphere of the festivals but were also able to participate in accessible activities too.

Case study

Before this project families reported they felt left out, divided and always watching others having fun from the margins of society. This division of the family felt sad for them. One parent always had to be left behind with the child with profound and multiple learning disabilities, while the rest of the family went off and enjoyed themselves. This was because there was never any fully accessible changing places available or activities to enable the child with profound and multiple learning disabilities to join in with everyone else. Families reported that all they wanted was to go for a day at the festival as a whole family and be together. One family reported that for the first time her child's gran had enjoyed a day with the whole family. It was a day where she got to be just gran. A day where she wasn't supporting her grandson's mum with personal care in the home. This child's mum reported that it was the first time that his gran had seen him outdoors, enjoying himself and having fun. For this parent this was a very special memory.

Project Outcome

Families have reported feeling marginalised at festivals because of a lack of accessible activities. Success will be hearing them report they spent a lovely time together as a family because their child was full included.

Results

PAMIS consulted with a variety of families and partnered with festivals who were willing to be more inclusive. The project covered, outdoor festivals, book festivals and a poetry festival. The project catered for everyone. This mean that there was something for everyone. Even people who could not physically attend a busy festival were able to access some of the developed resources and have fun at home with them. The poetry festival offered the opportunity for people with profound and multiple learning disabilities to participate in the delivery of a multi sensory poem about Tenstmuir. The festival programme was a success because it considered everyone's needs and because partners were wanting support to include people. Everyone felt included.

Case study

We love picture books in our family and I must have spent a fortune over the years for my daughter but she has never been to a book festival or met her favourite author. It is so very sad to think that she would never get that experience. The situation was so bad that I wrote about it in the Scotsman. My daughter loves picture books but at a book festival there is never really an accessible book event that she can attend and no accessible changing places toilet. However, that all changed with the festival programme. Both the Edinburgh and Wigtown Book Festivals offered the opportunity for people with profound and multiple learning disabilities to attend a special event at the book festival just like everyone else. The book festival is a great place to spend the day out together with friends and others. We meet up and spend a glorious day together. The staff that support my daughter brought her to the festival so I could relax and enjoy being just mum for a day. It is also marvellous to be able to share experiences like the book festival with her support staff too, as they see how much she enjoys these days out. Also PAMIS works alongside the authors to help them make their books accessible to people with profound and multiple learning disabilities and it is lovely for people with profound and multiple learning disabilities to be able to be with a children's author, just like everyone else at the festival. Thank you for the experience.

Project Outcome

If the families attending the events report feeling feel less isolated and marginalised

Results

Families of people with profound and multiple learning disabilities reported they wanted to spend the day together with the whole family. This project does this in many different ways. The families that attended the children's festival enjoyed the day listening to stories and watching their young people sitting listening to acoustic music the same as everyone else. The families who attended the book festival were the same, they enjoyed the company of other families every bit as much as the atmosphere of the festival.

Case study

As families caring for a child with profound and multiple learning disabilities we feel excluded and marginalised. There are rarely accessible activities to do or there is no fully accessible changing places toilet available. This is very restrictive for us as a family and very limiting for my daughter. We want to go out and do things like everyone else but it's usually impossible without a lot of planning and thought. Attending festivals where our children are included is the best feeling in the world. My daughter attended and participated in the poetry festival at St Andrews. It was great to see how my daughter was included in a poetry performance. We had a rehearsal every week for several weeks in preparation. For us, it meant we spent meaningful time together and we included my daughter's staff in the rehearsals. It was amazing to see her and her friend on stage at the Byre Theatre. She loved performing and enjoyed the whole experience. For me the festival programme has been amazing and brought so much to our lives. It is more than just a day, it gives us quality time together with meaningful activities and lovely memories. As the mum of someone with profound disabilities it fills me with joy to see her included.

Project Outcome

If everyone attending the festival reports they spent an enjoyable time together as a family and that there was something for everyone at the festival, including the child or young person with profound disabilities

Results

The project exceeded expectations. Families reported that to have festivals and events that they could attend together as a family was great and it reduced their feeling of isolation. Having meaningful activities tailored to suit people with profound and multiple learning disabilities at mainstream events was a relief. The experience of the whole family improved and had a positive impact on their mental and emotional well-being. Meeting other families at festivals and events and having meaningful activities within a mainstream setting also made family carers feel less marginalised. Being able to attend inclusive events really supports the caring role for families of people with profound and multiple learning disabilities. It decreases feelings of isolation and marginalisation.

Case study

There are not many festivals and mainstream events we can attend as they don't cater for people like my daughter. We refer to ourselves as the forgotten people. "We don't feel like the forgotten people here, " said one family. It was a wonderful experience. We camped for the whole weekend as we wanted to experience this before our daughter is too big to lift. We have loved every minute, it has been amazing. We have had the weekend of our life. Thank you so much" "It has been marvellous having the mobile changing places here. We would never have managed without it. Every festival should be like this. This is what you call creating memories and it is wonderful. It's a dream".

Project Outcome

To participate in open and honest discussions with festivals to identify and record what the barriers are for them in terms of improving the festival experience

Results

This outcome was highly successful and every festival PAMIS worked with welcomed the support, to improve knowledge and understanding of what was required to improve the festival experience for people with profound and multiple learning disabilities . All of the festivals with exception of council ran events, worked in partnership to improve the experience for people with profound and multiple learning disabilities and their families and this meant that the willingness of festivals and events to be more inclusive transferred to a positive experience for families.

Case study

Before the festival events there was no real understanding of what an inclusive activity looked like for someone with profound and multiple learning disabilities. It felt as if; as long as there was a token bag of fidget toys then that ticked a box. I know this is because of a lack of understanding of communicating with people with profound and multiple learning disabilities and not understanding how they access activities but this project changed all that. Suddenly their was an author event we could attend and the book being read was made accessible to my daughter so she could enjoy the event. There is not much for people like my daughter here out with school, so to be able to attend the festival with her was great. It opens up her life more and gives me a sense that my daughter can lead a meaningful and fun life just like other children. To have the festival organisers ask us directly what we would like them to improve is amazing. They continually try to grow, develop and improve. We spent the most magical day at the book festival.

Project Outcome

Sharing best practice to support better understanding of the caring relationship and better understanding of the short break needs of children with profound and multiple learning disabilities and their carers will always help to improve understanding of this group.

Results

This was achieved by promoting the events and working with festivals to improve physical and intellectual access for people with profound and multiple learning disabilities. This project was the beginning of growing this understanding. It was instrumental in improving the understanding of the needs of this group. It has created an awareness that people with profound and multiple learning disabilities and their families do want to be a part of society and attend festivals together as a family. The production of a festival guide will further this understanding but this currently has to be completed as it was interrupted by PAMIS having to react quickly for families to the COVID 19 emergency. With one event at Tenstmuir to go just as the pandemic occurred, PAMIS adapted and moved that event online as part of an online festival activities programme. All of the work in this project has helped improve understanding of the short breaks needs of people with profound and multiple learning disabilities and their families. The Shared Care Scotland film and a PAMIS guide will further support this.

Case study

Robert Burns Museum Before this project I would never have gone to the museum as I felt there wouldn't be anything accessible there. Ellisland Farm, home of Robert Burns for a number of years, was the venue for the inclusion of people with profound and multiple learning disabilities in the Dumfries Burns Festival. The venue was the barn at Ellisland and this was amazing. None of us had ever been to the museum, even though it is only a few miles from where we live in Dumfries. For this group to attend and be a part of the annual Burns Festival was amazing. The mobile toilet took away the fear and the whole multi-sensory experience in the barn was enjoyed by everyone. We got a free look around the museum and the museum staff were welcoming and understanding. Our group loved the whole experience and it opened up a venue to us that is on our doorstep and one to which we will return.

Additional project outcome

The Burns Festival in Dumfries and Galloway was fully inclusive as the multi sensory story there was written, created , developed and delivered by a local Arts Group, the Arts End of Somewhere. This group all have learning disabilities and this festival gave them a performance opportunity too.

Case study

The Arts End of Somewhere performed their Burns story in the barn at Ellisland to people with profound and multiple learning disabilities and an audience who came to see the performance. This made the event one of the most inclusive events of the festival. The group have gone on to win an award for this work and PAMIS have secured funding from The Holywood Trust to develop multi-sensory stories for other museums and venues across Dumfries and Galloway. Ellisland Farm museum will continue to support the telling of multi-sensory stories at the venue and are now more aware of the needs of people with profound and multiple learning disabilities.

Additional project outcome

The additon of an online festival for COVID 19 using some of the resources developed and adding new ones.

Case study

With one more local festival event to take place with Scottish Natural Heritage at Tenstmuir, as a follow on event from the poetry festival, the COVID 19 emergency erupted. Families were disappointed and distraught about the whole situation of the COVID 19 so PAMIS moved the event to being digital and set up online festival activities for families during this time of emergency. The virtual event was amazing and the resources contributed to a virtual activities programme that PAMIS has been established. http://pamis.org.uk/services/virtual-activity-programme/