Summary
Play-Sense is for parents/carers to get a break from their caring role whilst their children with disabilities develop communication and motor skills. During lockdown activities were delivered remotely via a number of creative solutions ensuring ongoing support, development and connectedness.
What Play-Sense Play Group & School Holiday Project did
Our project was delivered entirely remotely due to the Covid pandemic. As this had not been our original plan, we repositioned in consultation with parents/carers by introducing a number of creative outcomes-focused solutions to ensure targets would be met.
We continued to link parents with support as early as possible via ongoing work with referral partners. Parents had immediate and daily time out from their caring roles via our WhatsApp Autism, Play-Sense and Disabilities groups, Zoom meetings and activities including chat groups, mindfulness and expressive arts and pamper gifts.
Over lockdown, parents/carers attended a choice of 20+ training courses, including skills and resources to help their child cope with Covid quarantine. We offered training in Cantonese & Mandarin enabling more marginalised communities to gained a better understanding of their child’s condition and behaviours. All parents developed and practiced coping strategies that will improve quality of life of all family members.
We provided child development opportunities enabling learning and development, for children with disabilities and their siblings, via indoor and outdoor play. We made 20 short films for families; ‘how to’ messy, sensory play films featuring staff and facilitators known to our families and delivered all necessary materials including arts, baking and sensory equipment. We shared hundreds of resource links and information to stimulate development and provided Hidden Disability lanyards to all those who needed them to allow their children to experience freedom outdoors and reduce stress caused by enforced isolation.
We took care of marginalised communities by ensuring all our groups were involved including launching a Mandarin/Cantonese group with translator. All our materials were made language and neurodiverity-accessible via Reciteme technology on our website.
What Glasgow East End Community Carers has learned
The last year has brought great opportunities and choice despite the challenges for carers. As a service our learning increased exponentially due to the pandemic, in ways that would never have happened without lockdown;
We have learned to use technology to increase our reach to more marginalised communities and families in need. Having installed Reciteme technology on our website, we felt we could engage the new families we reached by launching a referral portal direct from our site. We worked with referral partners including our local NHS Child Development Centre to design and trial an online portal that was quick and easy for individuals and professional to use. This has significantly increased the number of self-referrals from parents who may have otherwise ‘slipped though the net’. In addition, we are receiving referrals from wider number of partners. More than half our referrals are due to word-of-mouth/reputation but the portal is giving those an easy way to act on their search, where before they may not have got round to it. This does, however, bring up capacity issues which we will monitor.
The unexpected and sudden nature of lockdown forced a service re-think overnight. We introduced new services to keep the service connected to our carers and maintain their contact with each other. We have been overwhelmed by the outpouring of support, humour and goodwill parents have for one another. We were unaware just how knowledgeable, creative and enterprising this group are. We see the evidence of the difference our workshops, training and other supports have had on parents in terms of their understanding, resilience and increased confidence, despite the challenges of lockdown and despite their lack of education, opportunity and resources. The group has assured us how successful our training and workshop programmes have been and how parents have really understood and applied the knowledge. This has been particularly apparent via our WhatsApp groups where we have seen 23k+ messages shared.
We have also seen the breaking down of barriers between cultures - this forum encourages participants to 'meet' via shared experience and is not confused or diluted by other social cues. We have been unprepared for the level of participation but realise that parents value the responsive 'in the moment' contact above weekly Zoom-type interaction
(although there is a benefit to both). Parents want our WhatsApp groups to continue post-pandemic and this will require consideration due to management of the group - having seen the benefits to carers, we would like to do this. Monitoring activity on remote platforms has highlighted gaps in services. We found that Mandarin & Cantonese speaking carers in
our area found it harder to integrate than e.g. African or Eastern European carers. One of the reasons for this is the barrier caused by written language requirement on WhatsApp. Most were not proficient in written English but may be able to converse in English. In addition, we found that despite previous training in Mandarin, their understanding of autism and how to employ strategies was low in comparison to other carers. We have piloted a new Mandarin/Cantonese peer support group then introduced a programme of training workshops and discussion to address this. Group size was smaller and learning planned at a slower pace in order to embed learning and overcome negative cultural beliefs.
The daily communication stream provided by WhatsApp has highlighted issues some carer groups have around managing the limited financial resources they have. We established that there was a genuine desire for training around this and were able to introduce social-style workshops for carers to learn about budgeting, credit and related issues.
Lockdown has given us the opportunity to re-think services and what is possible. Some of our Play-Sense parents joined
an expressive arts project we ran with Create Arts! In London. Due to the success of this, we now have funding for three further courses. We will now look at further sharing and partnership opportunities with organisations further afield and in collaboration with other centres where there may also be scope to benefit from economies of scale.
How Glasgow East End Community Carers has benefitted from the funding
How has your organisation benefited from Better Breaks funding?
Better Breaks funding has allowed us to introduce a valuable new service, into an area of multiple deprivation. This has benefitted Glasgow East End Community Carers in a number of ways;
• The Play-Sense project, funded by Better Breaks, is now embedded in the community as an essential local service
• Strengthening of professional partnerships – funding has allowed us to continue our partnership working throughout lockdown when many organisations pulled back their support. This has further cemented our close working relationships – referral partners and local carers have commented on our unwavering commitment and stability. We have been able to continue to take referrals and make future plans for joint working including the possibility of a new support group collaboration with NHS Child Development Centre.
• better Breaks supported us to creatively reposition our project due to lockdown, further enhancing our organisational reputation as a forward-facing, solutions-focused, quality provider. Statutory and third sector partners see us as a ‘go to’ service for parents and, in addition, the local community share their experiences, leading to a high number of word-of-mouth referrals.
• Having the Play-Sense project in our portfolio has supported us to achieve our organisational goals – it enhances our position with our large core funders and gives local families a voice. We have demonstrated how local families can be empowered when they help create services that work for them and improve health & wellbeing outcomes in an area
of disadvantage. Funding has allowed parents to be referred for support much earlier in their child’s life. Throughout lockdown they have continued to be supported to achieve something positive towards their child’s development.
• Play-Sense started as a pilot play group on a small scale and has developed into one of our most successful projects with its own name and logo (chosen by our parents). Without Better Breaks funding this new service, in an area of need, would not have been possible. We continue to learn from, and develop, the project as evidenced over the current pandemic. The needs of the project have influenced Carers Hub staff to develop and increase our knowledge of disabilities and conditions. We continue to up-skill our staff, widened training opportunities and broadened the expertise of the Hub team, for example the wide range of BME cultures we support in play-Sense has influenced our Welfare Rights specialist to undertake more training in this area.
Play-Sense is viewed by staff, parents and professionals alike, as one of the best possible type of resources and an essential addition to local third-sector service provision.
Project Outcomes
Outcome
We will have successfully supported 60 children with disabilities living in the East End of Glasgow by their attendance at our weekly Play-Sense play group, eight weekend outings and ten holiday activities.
Results
We reached more people (200 parents) with our 3 WhatsApp groups. What we offered; • 20 short ‘how to’ video recordings made by our sensory specialist • short video ideas for outdoor activities including nature collage & dirt painting. Hidden Disability lanyards were provided. • materials to homes with creative, messy art materials, baking supplies for ‘edible mess’ • Zoom training on creating small sensory spaces at home, sensory light/sound equipment to get started & grants for equipment • we shared thousands of ideas on WhatsApp, dubbed 'the ideas pot' by parents.
Case study
Names have been changed to protect anonymity.
Li Na and Wang Yong have two young children and are asylum seekers from China. Their eldest child has been diagnosed with autism whilst the youngest is under assessment.
Mum Li Na is committed to providing the best opportunities for her children despite difficulties gaining support and recognition from her wider family. Both children attended Play-Sense pre-lockdown and Li Na was anxious that her eldest child’s development would be affected. He is a quiet but curious child who loves books and is calmed by access to sensory spaces. We supported Li Na to apply for an i-pad which was granted. She used this to work on her child’s reading. In addition, following attendance on our training courses, Li Na developed her learning around the importance of social stories and visual schedules for autism and went on to produce materials which helped her communicate with her child. She reports that he understands her requests better and there is less tension in the family. Li Na went on to show her materials and explain the benefits of this with the Mandarin/Cantonese parents who attend our Chinese group. This helped reinforce the benefits behind our training to other parents in her situation.
Li Na’s children also benefitted from messy arts materials, developmental books and sensory equipment. She tells us 'It's good for the kids to see familiar faces on the messy art clips. We feel a part of the centre even during lockdown and appreciate all the materials you have provided to help us.' The Hidden Disability lanyard has helped Li Na overcome her anxiety around being in shops and parks with her children 'The way people stare at you when you are out is unbearable - the hidden disability lanyard changed our life. I feel better that people know the reason for my child's behaviour'.
Outcome
We will have successfully supported 50+ carers of pre-school children with complex disabilities & 40+ carers of school-age children. They will have enjoyed various activities, family events, new friendships, hospitality and pamper/beauty sessions as a direct result of attendance.
Results
We introduced measures which proved popular and met pre-lockdown targets.
• WhatsApp groups – gave parents access to their peers. Parents shared 23,000+ messages but also made friends, shared jokes as well as what they were cooking! WhatsApp provided a platform to take time out at any time of the day. We saw many more reticent parents opening up/developing friendships more easily. Ethnicity became less important as parents met in relation to their own experiences • 3 regular Zoom groups added another layer of support • Wellbeing activities including mindfulness ‘I can’t believe I’m so relaxed with three kids in the house. This is my new religion!’ • Expressive time-out via our Create Arts! course, materials delivered by staff. . ‘The class was lovely - everyone was extremely welcoming and understanding. The support given was very much appreciated.’ ‘I loved it – it was really good. . . the company, joining in, doing something new. I found it very therapeutic.’
Case study
Names have been changed to protect anonymity.
Asma struggled with anxiety, feelings of isolation and low self-esteem. She is unable to share her daughters’ diagnoses with her family due to their unwillingness to accept disability in the family. She feels lost in her care role for her two daughters and has neglected to nurture her own needs, including her creativity, for many years. During lockdown Asma was referred to us by the local Child Development Centre. We were able to instantly connect her to a community of parents of all cultures who understood her challenges and allowed her to share her vulnerabilities without judgement. This supported her to make new friendships and she began to grow in confidence, posting pictures and celebrating her children’s achievements rather than worrying that they were falling short of expectation. She began to live here and now and her worry about the future started to diminish. When we offered our parents the chance to participate in our parent carers Create Arts course, Asma jumped at the chance. She reported;
‘I really, really enjoyed myself . . . being able to express . . . I feel like the adrenaline rush and freshness you get after exercising. As a Carer it was lovely to have something to look forward to, which I was able to do from the comfort of my home as I don’t have anyone to take over for me. I found all of the tasks very therapeutic, especially drawing which Has sparked an interest and I am sketching more and more at night when I have free time.’
The project has facilitated Asma’s shift from a place of isolation and despair to one of empowerment, friendship and support.
Outcome
90 parents/carers of pre-school children with disabilities will report being better connected to support within and will have benefited from knowledge and experience of peers and staff members resulting in increased capacity to understand their child’s condition and develop coping strategies.
Results
• 18 parents benefited from Could it be Autism training to begin the process of understanding their child's neurological behaviours and needs • 80+ parents attended 25 course options allowing parents to put knowledge into practice with their own child 'Very informative, made us feel very relaxed to talk about often difficult topics. Great to discuss together and share experiences as this makes us feel not so alone, nice to learn as a group' On sliding scale 1-10 our carers tell us;
• I am better equipped in my caring role - 9
• My understanding of my child has improved - 9.9
• helpline appointments parents to gain individualised support 'It was amazing to speak to someone who understands. Doctors explain things from their own neurotypical understanding but you identify and break down the issue because you see it from our side.Now we will try a new approach. I couldn't recommend the helpline service highly enough.' 'Sharing with others has helped keep me sane'
Case study
Names have been changed to protect anonymity.
Victor and Abebi just arrived in Glasgow from Nigeria, via Europe, when the pandemic hit. Their lives were in a state of upheaval and they were stressed, unsettled and struggling to cope with their three children, including a young son with disabilities. Knowing nothing about supports available to them, they were referred to the Carers Hub by the Child Development Centre. They were supported by both organisations to ‘meet’ us for a Zoom assessment where it was identified that their need for all-round support including carer rights information, emotional support, financial and educational input. Victor had a zero-hour contract which was proving very unstable, whilst Abebi felt isolated and struggling at home.
A second Zoom meeting allowed us to listen to the couple’s description of their child’s needs/difficulties in detail and observe their child in his home setting. This gave us huge insight into their circumstances and it became clearer that they had an arduous care role, with little sleep or respite due to severe sensory challenges. They were subsequently awarded high-rate DLA with Carers Allowance in progress. Our hand-on Zoom meeting confirmed an overcrowding problem at home which was having a detrimental effect on Abeo. We supported a housing application and organised a witness signature. The family is now awaiting a housing decision but feel listened to and supported.
We also learned that son, Abeo, was much calmer when absorbed on Abebi’s phone. We applied for a tablet which was granted from Family Fund - now Abeo is much calmer and his parents have used the tablet to access training and are far better equipped to manage and understand Abeo’s condition.
Once the family were more settled and secure, we introduced both parents to their peers on one of our WhatsApp groups. Victor and Abebi gained lots of reassurance from parents they’d never met. They were assured that their son’s behaviour was a disability, not bad behaviour, or anything they had done wrong as parents. Felt less isolated and more confident in finding help/information.
Victor says ‘Thank you for your help and concern towards my family, you are a saver, God richly bless you. You have filled us with hope for our son's future. We've learned so much through other parents and the training. Thank you!'
Victor and Abebi are now more trusting and are reassured of our ongoing support. Their confidence has increased and they are more hopeful for the future. They are clearly very settled in our groups and are contributing and posting more light-hearted comments and even welcome new members.
Outcome
90 parent carers and 60 children with disabilities will feel more fulfilled and have experienced a reduction in stress symptoms and increase in emotional and mental wellbeing.
Results
200 carer (& children by proxy) were supported by measures to reduce stress and increase wellbeing; • workshops/training gave skills and knowledge to de-escalate child’s distress • telephone helpline was increased allowing parents to discuss their personal situation in detail • sensory play films & materials supported parents’ involvement in meaningful activity, helping both parties • WhatsApp & Zoom gave parents a constant point of contact to see them through day-to-day life in lockdown • time-out activities including cooking and creative arts helped parents ring-fence time for themselves • mindfulness, counselling and 1:1 staff sessions addressed issues and provided tools to apply to daily life • additional Carers Hub services including education rights, benefits, money advice helped reduce stress • replacement care reduced stress for those with particularly challenging home circumstances due to level of disability, grief, loss and ill-health.
Case study
Names have been changed to protect anonymity
Young parents, Kat and Evan, had their lives turned upside down when Kat was diagnosed with a life-threatening health condition just as lockdown began. Each parent was concerned for the other and for their children, both of whom have learning difficulties and sensory impairments. They wanted to provide ongoing developmental support to their children but had limited family support. In addition, Kat attended several courses of treatment and had major surgery meaning that she was in bed much of the time. Evan was struggling to cope with worry, caring for the children’s needs and trying to keep his employers on-side. We spent time with the family discussing their needs as a unit and individually. Dad Evan agreed, with encouragement from Kat, to accept a course of telephone counselling from our carer-experienced Counsellor. We were able to provide a regular worker from our Homecare service to help with the children each morning and we provided activities, resources, materials and sensory equipment for grandparents and workers to use with the children. Our welfare rights worker sought grant funding for a dishwasher to take further pressure off the family. When well enough, Kat continued to maintain her peer friendships via our WhatsApp groups and Zoom meetings with peers and staff. This gave her time away from her worries and she was able to share her children’s development by posting fun activity photos along with other parents.
Kat reports ‘I have come through the worst experience of my life but I couldn’t have done it without the support of the Carers Hub. I’m now in a better place and looking to the future with hope.’