Summer Respite Programme
A story by SAMs Charity
We provided respite support to help vulnerable families impacted by significant childhood disabilities/multiple additional support needs better cope with both the existing challenges faced as well as those made worse or created by the pandemic, improving their overall wellbeing, resilience, and quality of life
What Summer Respite Programme did
The pandemic has exacerbated the existing challenged faced by the families we support and also created new challenges that’s further impacted their overall wellbeing. Although we initially secured funding for our annual Summer Respite Holiday, we required to instead provide an alternative respite package as a result of the government’s guidelines/restrictions which further restricted the times of year that certain support activities was provided, especially as most of the disabled children supported have medical conditions that required them to shield/self-isolate over long periods.
Overall we’ve provided 12 family respite breaks at our specially-adapted caravan and 50 overnight pamper breaks at local hotels during which Parents/Carers received dinner/afternoon tea and spa treatments. Because of the extended restrictions put in place during spring, a handful of Parents/Carers were unable to access the final voucher/break provided, with these instead planned to run in May 2021 as things have opened again.
We also provided 100 spa/beauty treatments for Parents Carers which included aromatherapy massages, manicures, etc. which gave Parents/Carers some additional time to themselves to de-stress(4 per family). We also provided 40 dinner vouchers for families that enabled them to spend positive time together away from the day-to-day challenges at home.
At-home respite sitting sessions provided whilst Parents/Cares enjoyed their respite support enabled children/young people with complex disabilities and multiple additional support needs to engage in positive games/activities with our volunteers. We also provided regular activity packs with games/puzzles, sensory toys/resources, crafts, etc., that helped keep children stimulated/entertained whilst stuck at home, further giving Parents/Carers a bit of help at-home.
Larger activity hampers with gifts were provided at Christmas and Easter to help keep families more positive. We also provided a handful of club events with our usual group broken down to lots of smaller groups within a large activity space, enabling profoundly disabled children to safely reconnect and positively engage with their peers.
What SAMs Charity has learned
Although this has been a difficult year for all of us, it’s disproportionately impacted our community’s most vulnerable including the vulnerable families we support who have experienced increased/additional financial pressures/strain, isolation/loneliness, stresses and anxieties, and other day-to-day challenges.
Even though we had developed an alternative respite support project early on in the funding period as it became clear that we would not be able to run our annual Summer Respite Holiday for which the grant was originally provided, we had to continually evolve the support plan because of the changing guidelines/restrictions as this impacted some of the activities we sought to provide, especially as several of the disabled children we work with have other long-term medical conditions that put them at increased risk of getting coronavirus and therefore had to shield/self-isolate depending on the condition(s).
For example, we initially sought to provide some activity days out for small groups of 3-5 children during which their Parents/Carers would be able to access the pamper respite activities we organised for them. However, because of the continuing restrictions and limited community opportunities plus our clients’ own needs, we were only able to provide a handful of activity events to small groups of children, with the remaining support instead provided on a 1-to-1 basis where possible.
These restrictions additionally impacted the number/type of short overnight breaks provided as we initially sought to provide the majority of these within the caravan park at which we have a specially-adapted caravan and can get discount rates for other units. We were only, however, able to offer those type of breaks at key times of the year, with the remainder instead purchased/provided at a local hotel though this also provided some unexpected benefits as Parents/Carers could access spa treatments there, which further supported their overall wellbeing.
We also did not expect to provide quite as much support via activity packs/hampers; however, in light of the continuing health crisis and our clients’ own limited resources, we felt that it was very important to provide a wide range of activity materials, sensory resources, as well as adding gifts/toys in the holiday hampers so that the families felt more supported, the children had more activities to keep them entertained whilst stuck at home, and the Parents felt less stressed/worried.
As a small volunteer-led charity, we did struggle a bit with all of the evolving changes needed, at least perhaps more than other organisations that have paid staff/sessional workers. We are however still very pleased with how quickly we were able to adapt and meet the needs of the families we support.
We simply would not have been able to provide this project without the continued support of the Better Breaks Fund which also helped us secure additional grants from other trusts and foundations: enhancing the overall support provided for vulnerable families impacted by childhood disabilities.
How SAMs Charity has benefitted from the funding
Although funding was initially secured towards the costs of our annual Summer Respite Holiday, this project was unfortunately cancelled because of the pandemic and we instead developed a new project plan as agreed with The Short Breaks Fund to instead provide respite packages for vulnerable families impacted by childhood disabilities and multiple additional support needs. This was a completely new type of project for SAMs Charity as our work primarily focuses on providing the same services annually that we know our service users love and rely on. Because of this, there was a bit of a learning curve, especially as we required to make additional changes due to the continuing health crisis which has of course lasted much longer than we had initially expected. This included providing more at-home activity packs to help keep children more positive when stuck at home, 1-to-1 support rather than small group activities disabled children during which their Parents/Carers accessed their pamper respite activities, and providing overnight short breaks both at a caravan park and a local hotel rather than primarily in the caravan park at which we have a specially-adapted caravan and can also access discounted costs for other units. The alternative project plan enabled us to continue providing tailored support though in new ways, e.g., providing spa/beauty/meal/breaks based on the unique needs/likes of the Parents/Carers supported as well as more tailored activities/at-home activity packs depending on the age, disabilities, and likes/dislikes of each individual child. This helped us to continue meeting the needs of the families supported. Given the overall changes and unique services run this year when compared to our typical annual programme of activities, we’ve certainly built increased knowledge and experiences that will support of our on-going work with vulnerable families impacted by childhood disabilities, the majority of which are profoundly-disabled. Thank you once again for this very kind support of work. Our small, volunteer-led charity simply would not have been able to offer such a varied programme of activities without the continued and generous support of Shared Care Scotland. Your support further helped us secure additional grants from other trusts and foundations, therefore enhancing the overall support we could provide this year.
30 children/young people with disabilities/multiple additional support needs will have taken part in a 6 day Respite Holiday during which they’ll have engaged in interactive games, inclusive sports, 1-to-1 sensory, and day trips previously inaccessible. As a result, children/YP will feel less isolated and more positive/resilient
We provided an alternative package of respite support in line with the government’s changing guidelines/restrictions via which 32 children/YP with complex disabilities/multiple additional support needs and 11 able-bodied siblings received at-home respite sitting support, special holiday hampers, and regular activity packs with games/puzzles, sensory toys/resources, crafts, etc. Children also accessed family respite breaks. A handful of activity events were also held, with the group of children instead split into lots of smaller groups, helping them safely reconnect with their peer/social groups. As a result of engaging in these activities, children with disabilities felt better supported, better able to cope with the on-going/increased challenges faced and felt more positive, hopeful, and resilient.
Although we initially sought to provide small group activities and days out for disabled children at a time whilst their Parents/Carers enjoyed their afternoons/nights out, we were unable to provide this as a result of the significant restrictions put in place during the year as these lasted much longer than expected due to the continuing health crisis. In light of this, we primarily provided support on a 1-to-1 basis though we did provide a small handful of activity events in which our typical group size was split into several smaller sessions. We also provided regular activity packs and holiday hampers that truly made a big difference as it helped keep the children supported more positive whilst stuck at home, reducing the overall stress, frustration, and anxiety experienced in the home. Given the mounting financial pressures that our clients have faced this year, we knew that they wouldn’t be able to provide these sorts of ‘luxuries’ for their kids in addition to covering the additional food/energy costs required when staying at home for such an extended period of time. This is why we also included toys, games and sensory resources in the holiday hampers which helped improve the overall attitude/spirit of those supported. Parents/Carers provided lots of positive feedback on the overall support provided for their children as briefly noted below: “S has really struggled not being able to see her friends at SAMs this year but obviously her safety is our priority. That’s why these respite activities and packages are such a gift and mean so much as it lets her have fun and play games. She’s been much happier than she was during the first lockdown period. I really can’t thank you enough for all the support you’ve given us.” “Thanks so much for the Christmas gifts, it really put a smile on the kid’s faces to see this amazing package of activities and toys just for them, especially as it’s been such a tough month. They’ve been playing with them for days now which has actually given us a bit of time to relax at home that’s just been so great. It means so much to us that you are still thinking of us at this time of year and putting smiles on the kids faces even though we can’t meet up for the annual Christmas Party. Thank you thank you thank you.” “Big thank you to Santa and his elf for delivering so much joy to C today. She absolutely loves all the fun things to do in her Christmas package. I can’t thank you enough for all the support you’ve given us this year.”
30 children/young people with disabilities/multiple additional support needs and 25 Parents/Carers will have taken part in a 6 day-long Respite Holiday during which they’ll engage in positive activities, experience an environment out with their community, develop new friends/support networks and skills, and feel more supported.
We provided an alternative respite package in line with the government’s changing guidelines/restrictions for 32 children/YP with complex disabilities, 11 able-bodied siblings, and 25 Parent/Carers. As part of this, families received independent services and also family respite breaks that they wouldn’t have had access to without our support but which enabled them to relax more and enjoy each other away from the pressures/stresses faced at home. These services helped families de-stress, feel happier and more positive about making it through the pandemic, and improved their family relationships and wellbeing. Opening support for abled-bodied siblings also helped strengthen the bonds between siblings and improved their attitudes towards them, e.g., reducing jealousy/frustration often felt due to all attention being on the disabled sibling(s), especially as so many required to help care for their disabled siblings. This further supported each family’s wellbeing.
Family M have 3 children, 2 of which have complex disabilities and multiple additional support needs and have really struggled with the changing restrictions/lockdowns put in place because of the pandemic as this has cut them off from the typical daily structure and the vital peer/social groups they’ve made through our various services (typically their own networks), causing regular meltdowns that’s put significant stress on their Parents/Carers and sibling. The family has benefitted from all of the services provided through this alternative respite support programme, with the children particularly loving the regular activity packs distributed to their homes which has helped keep them calmer, happier and more positive overall, reducing the number of meltdowns experienced, which has, in turn, helped support their family’s overall wellbeing. The first line of support provided to Family M was a week-long respite break at our specially-adapted caravan in summer 2020 after which Parent 1 advised “I honestly never though we would get a break this year but being able to get away from our home where we’ve been restricted to for months and going to the caravan for several days was so amazing. We really needed this change of scenery and I already feel better in myself plus it’s great to see the kids smiling so much and they’ve loved all the different games and toys on site. Because we live in a tenement, we don’t have our own garden so it’s been great to get some fresh air and take the kids on walks outside. We honestly needed this break so much and finding out we’ll get another has just blown my mind. I really don’t know what we would do without you.”
25 Parents/Carers will have taken part in a 6 day-long Respite Holiday during which they’ll receive much-needed respite, spend time with their partner/peers, and build new friendships via shared experiences whilst engaging in parent-only activities that were previously inaccessible.
We provided an alternative respite package in line with the government’s changing guidelines/restrictions via which Parents/Carers received 50 overnight pamper breaks at local hotels with dinner/afternoon tea and spa treatments as well as 50 meals out and 100 additional spa/beauty treatments for aromatherapy massages, manicures, etc., that gave Parents/Carers additional time to themselves (4 per family). These services enabled Parents/Carers to de-stress, spend time on themselves and/or their partners, and feel stronger and better able to cope with and overcome the increased/additional challenges, stress, and anxieties faced. Helping Parents/Carers de-stress and feel more supported, in turn, helped to further improve family relationships and wellbeing. .
Family D have 4 children, one of which is a wheelchair user with several disabilities and medical conditions and another has autism and learning disabilities. We know from on-going discussions with the Parents that they’ve really been struggling with the changing restrictions and enforced isolation put in place, especially as this has limited our own on-going Children’s Club that they usually rely on for on-going respite during the year as well as has meant that they’ve been unable to meet with family who sometimes help share the load by watching their able-bodied children. This has, overall, really increased their overall stress levels. The multi-faceted support we’ve provided has therefore really helped families like Family D as it’s given the Parents/Carers some time to themselves in which they can relax and just focus on each other away from the stress/responsibilities at home. The activity packs/hampers provided have further supported this by giving all of their children some fun activities to help keep them stimulated and entertained, giving the Parents/Cares some additional time to themselves at home, supporting their overall mental health. Parents D&R advised the following after enjoying one of their vouchers last summer: “Thank you so much SAMs for the ‘dinner out’ vouchers. We used one this week and I honestly think that this was the first time we’ve been able to have a date night in over a year as it’s just not easy for us with the children plus things are so expensive now. The staff at Mharsanta treated us so well and the food was lovely, we really couldn’t have asked for anything better. These simple things mean so much for us and I can’t thank you enough for your continued support of us and the children. Already knowing that we’ll be able to organise other afternoon or evening out is so brilliant and helps keep us going.”
25 Parents/Carers will have taken part in a 6 day-long Respite Holiday during which they’ll receive much-needed respite, spend time with their partner/peers, and engage in parent-only activities that were previously inaccessible due to their child’s complex support needs and financial limitations
25 primary Carers of children with complex disabilities/multiple ASN accessed 12 family respite breaks, 50 combined overnight pamper breaks with dinner/afternoon tea and spa treatments, 50 meals out, and 100 additional spa/beauty treatment for aromatherapy massages, manicures, etc. Parents/Carers have experienced additional challenges, stresses, and anxieties due to the pandemic, especially as so many of the children don’t understand why they have to stay home/shield, causing additional stress and meltdowns and meaning Parents/Carers have had very little breaks. The opportunities we provided therefore have been vital in giving Parents/Cares much-needed respite and time to focus on themselves/their own health: helping them feel less stressed/hopeless, stronger, and better able to continue coping with/carrying out their caring responsibilities.
We know from our many years’ experience of working with vulnerable families impacted by childhood disabilities and multiple additional support needs that Parents/Carers often forgo all self-care in order to give their disabled children the 24/7 care they need. This, however, has long-term repercussions on their overall health and wellbeing as well as that of their children. Because of this, we wanted to provide spa/beauty treatments as part of our overall respite packages this year so that Parents/Carers felt important, rejuvenated, and restored to help them continue coping with/carrying out their caring responsibilities. Carer C advised the following after meeting up with another Carer and enjoying one of their treatments together: “Thank you so much for these treatments. B & I were able to snag one of the last appointments to get our nails done and some nice hand massages before the new restrictions went into effect. We honestly felt like proper princesses afterwards. It’s been such a long time since I enjoyed a girlie afternoon and being pampered a little felt so good and sort of recharged my batteries.”