Short Breaks for Children with Disabilities
A story by Inverclyde Carers Centre
Inverclyde Carers Centre Carer Support Workers assisted Carers to identify and arrange short family holidays which met their individual families needs. This typically involved identifying and booking accommodation, transport and activities.
Carers were able to bring other family members or friends to provide support during the break and enable them to have time away from their caring role if they wished.
Breaks take the form of short family holidays meeting the cost of accommodation, transport and support if required. We aimed to provide a total 6140 hours short breaks which equated to 256 night breaks to 57 carers in the 12 month period. We anticipated that 37 children with disabilities would benefit.
Tip 1:To have access to internet and for staff members to encourage carers to consider a range of options without overburdening carers with another daunting task.
Tip 2:Respond quickly to applications and process payments promptly.
Tip 3:If required, liaise with accommodation and transport providers to reduce pressure on carers.
“My name is Frances Gilmour; I have an eight year old son Daniel who has autism. I found out about short breaks through a leaflet drop within Daniels school bag. We went to Craig Tara in July this year, the weather was beautiful and we were able to go to the beach every day, which Daniel loved. He was in the water and had great fun playing in the sand; he also loved the fairground, swing park and swimming pool. This break was a wonderful opportunity for us to have lots of fun times together and the best part was seeing how happy Daniel was, he had so much fun. Thank you to everyone involved; It was fantastic.” “It was great to have quality family time together.”
Karen and her husband care for their 14 month old son Paul who suffers from a chronic lung condition. Paul lives very much in isolation and can’t take part in social or family activities due to the risk of infection so the location of the break was important as Paul requires 24/7 dehumidifying and oxygen equipment. During a visit to the Carers Centre it was highlighted that Paul's parents experience a range of difficulties just to take Paul outside; his dad is currently carrying the oxygen equipment on his back as the pram they have is unsuitable. Karen is unable to carry this equipment due to her own health issues. Karen told us the relaxing break helped deepen their bond as a couple and hold special memories. It was the first time Karen had been on a boat and most importantly, the first time they were able to take Paul swimming, oxygen and all, as the pool was much quieter.
Jackie and her husband, care for their grand son Adam who has Aspergers and his mother Amanda, who has MS. Better Breaks enabled them to go to a holiday park as a family. The park had lots of leisure activities which the whole family could enjoy as well as providing the carer with chance to do activities with her own son.
This project was promoted by our core staff and outreach staff to all carers of children registering with the centre. Our Outreach Worker has a monthly presence in 18 community and health settings across Inverclyde and also attends around 20 public events per year. The worker also visited Barnardo’s Family Support Group, Autistic Support Group, Parenting Again and Downs Syndrome Support Groups.
Carers own experience of breaks and information on how to access these were included in our bi-annual newsletter, on our own website. Social Work staff in the Children with Disabilities Team also promoted this to families they are in contact with, to colleagues in Children and Adolescents Mental Health Team (CAMHS) and Community Nurses.
One child involves support to carry oxygen equipment. Carer has to always ensure the child doesn’t unplug or trip over oxygen wires. Others are quadriplegic, reliant on hoists and wheelchairs.
Personal Care and Supervision/vigilance
Child sleeps with motion sensor to monitor activity during night, childs condition makes them prone to violent behaviour. Majority of carers have to prompt or carry out personal care for children.
Access to social activities many children cannot access social activities with peers due to lack of social skills. Education, 1-1 support in nursery or school, one child attends Visual Impairment Unit in school outwith area another attends Life Skills course through local college.
Communication, speech and language support all communication through facial expressions which mum understands. Other children use hearing aids, specialist resources, one child uses Braille. Peg feeding as nil by mouth.