Short Break Stories

Short Breaks for Children and Young People with Additional Support Needs and their Families and Carers

A story by Central Carers Association

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The project facilitated the following supported group outings and events for young people and their families:

Summer 2013
Falkirk district families trips to Glasgow Science Centre and Auchingarrich Wildlife Centre
Clackmannanshire families trips to Auchingarrich Wildlife Centre and The Yard, Edinburgh

October 2013
Falkirk district families trips to tenpin bowling and The Yard, Edinburgh
Clackmannanshire families trips to Resonate Together, Alloa and Glasgow Science Centre
Falkirk district families Play and Chat session, Falkirk

In addition, in order to target parent carers in Clackmannanshire and make the outings more widely accessible, four parents group meetings were facilitated in this area.

The project aimed to increase the availability of short breaks for children and young people with additional support needs and their families in Falkirk district and Clackmannanshire by facilitating 8 group outings for young people and their families during the summer, Easter and Christmas holidays.
Tip 1:
Involve parents and families from the outset in order to gauge abilities and support needs and to ensure that outings and activities offered reflect the preferences of the families.
Tip 2:
Work closely with other local organisations who support children and young people with additional support needs to ensure that activities complement any existing provision, to avoid clashes with dates and duplication, and to ensure that activities are publicised as widely as possible in order to target those who are most likely to benefit.
Tip 3:
Advance planning and attention to detail is crucial as is ensuring that families are kept fully informed of arrangements as far in advance as possible. Small things can make a huge difference to the success of the day such as, for example: providing a visual timetable for young people, bringing maps and directions along on the day rather than assuming the coach driver will know how to get there, being prepared with wet wipes, sick bags, small toys, a football – the small things will make it extra special and more smooth running.
The project has, to date, facilitated nine outings for children with additional support needs and their families who would not otherwise have had an opportunity to have a break of this nature due to lack of availability, lack of support, prohibitive costs and other challenges faced by families who have a disabled child. Using the funding that was available to us, we were able to help families overcome many of the common barriers, enabling them to enjoy a range of outings which were fun, stimulating and rewarding, often leading to unexpected and longer term outcomes that had not previously been anticipated.

Carers told us about the barriers that the project had broken down for them and their children:

• Financial barriers

“Without a doubt we as a family would not have been able to do anything like this.”
“Summer holidays stretch the purse. Also not sure I would travel or find The Yard on my own”
“It was good not having to worry about the cost of the day out – so reduces stress levels about the day.”
“I have never been to the Science Centre before as I couldn’t afford the fares and entry fees”
“Son wants to do something all the time so glad I could take him there.”

• Managing alone

“I feel more able to manage my kids on an outing having had the chances to do that with some support available if needed.”
“I was unsure if I would be able to cope with two children on an outing like this but it worked out well.”
“I feel I was able to really enjoy the day as I felt comfortable and supported. I wouldn’t usually go on a trip like that on my own with [my son] as I usually need support but that can cause other stresses taking friends or family.”

• Social stigma

Parents reported that there was “safety in numbers” and that they felt more confident as when they went somewhere on their own they found the disapproval shown at their children’s different behaviour difficult to take.
“I felt less isolated after the days out. I also felt less self-conscious on outings, as I wasn't the only person with a child with special needs.”

Case study

Tina’s son Daniel has ASD. Daniel and Tina attended the session at the tenpin bowling in Camelon. Tina reports that previous attempts at this activity have not been successful. However, the fact that we were a group, and that the staff at the bowling alley had been briefed about the young people’s needs, meant that Tina could do what she needed to help Daniel become comfortable with the activity and so make it possible for him to enjoy it. Tina reports that Daniel really enjoyed the day and that she is going to take him back again.
In a separate evaluation completed by children and young people:

98% felt happy about the outing as a whole
2% felt unhappy about the outing as a whole

87% thought the things to do were awesome
11% thought the things to do were good
2% thought the things to do were not very good

55% thought the food and drink was awesome
34% thought the food and drink was good
1% thought the food and drink was not very good

59% thought the journey was awesome
30% thought the journey was good
1% thought the journey was not very good

(data based on 46 responses)

Evaluation of the project indicated the following outcomes that have resulted in improved wellbeing for different members of the family, including the carer(s), those they care for, and siblings:

• Carers felt less stressed

“Felt like there were others, felt less stressed, felt really happy as I could enjoy being with [my son] knowing that others understood.”
“We as a family feel less stressed … we can enjoy a day out together with tremendous support. I feel I can have support for myself from the Carer’s Centre at any time.”
“We had a brilliant day and nothing could have improved it. It was all round fun and I had great support that made me feel relaxed and less stressed than I normally have been on a day out with all the kids.”
“For the day it does [improve life outside caring] as it gives me permission to take time off from the rest of my busy life.”

• Family relationships improved

“Got me closer to my children in a fun way/setting”
“Enjoyed spending one to one time”
“She enjoyed the outing and was able to spend quality time with her brother without them fighting.”
“It was great that the whole family had time together and for the children to meet and make new friends.”
“I got to spend time individually with the kids which doesn’t happen very often”

• Disabled children and young people enjoyed the experience

“I was surprised how much interest Ewan showed in the activities. He enjoyed his day.”
“Gordon wasn’t sure at first, but he settled down quickly because the staff/helpers and the other children made him feel welcome”
“[The Yard was] somewhere he can run wild without obstacles”
Parents reported that their children are not often invited along to things with their classmates due to perceived behavioural problems. The outings gave them, parents felt, the opportunity to socialise with other children.
“It provided a much needed chance for my daughter to interact with other children during a long summer holiday.”
[See previous outcome for the results of evaluation carried out with the children and young people themselves following the outings]

Case study 1

Amy is new to the Carers Centre. She is a lone parent with a young child with additional support needs. She is isolated, lives far from other family members, and does not have a network of other parents who can support her. Amy reports that she has not gone out with her son for twelve months because of his behaviour. On the first trip Amy attended she met another Mum in a similar situation. The two families are now spending time together, the boys are learning to be friends, and they are planning trips out together. Both mums have acted on advice and tips from other parents, been linked with services via the Carers Centre Parent Support Worker, and appear to be growing in confidence.

Case study 2

Linda has a young son with Down’s Syndrome. David is five and his sister Eleanor is three. Parents Support Worker Anne attended the outings and got to know the children. At Glasgow Science Centre, Anne spent the morning with David, and the afternoon with Eleanor, allowing Linda some one to one time with both of her children: “I got to spend time individually with the kids which doesn’t happen very often”.

In the carers’ evaluation of the outings:

83% said the project had improved their health and wellbeing.
96% said the project had improved their economic wellbeing
88% said the project had improved their relationships

(data based on 31 responses)
Evaluation of the project indicated the following outcomes that have resulted in improved wellbeing for different members of the family, including the carer(s), those they care for, and siblings:

• Carers felt less stressed

“Felt like there were others, felt less stressed, felt really happy as I could enjoy being with [my son] knowing that others understood.”
“We as a family feel less stressed … we can enjoy a day out together with tremendous support. I feel I can have support for myself from the Carer’s Centre at any time.”
“We had a brilliant day and nothing could have improved it. It was all round fun and I had great support that made me feel relaxed and less stressed than I normally have been on a day out with all the kids.”
“For the day it does [improve life outside caring] as it gives me permission to take time off from the rest of my busy life.”

• Family relationships improved

“Got me closer to my children in a fun way/setting”
“Enjoyed spending one to one time”
“She enjoyed the outing and was able to spend quality time with her brother without them fighting.”
“It was great that the whole family had time together and for the children to meet and make new friends.”
“I got to spend time individually with the kids which doesn’t happen very often”

• Disabled children and young people enjoyed the experience

“I was surprised how much interest Ewan showed in the activities. He enjoyed his day.”
“Gordon wasn’t sure at first, but he settled down quickly because the staff/helpers and the other children made him feel welcome”
“[The Yard was] somewhere he can run wild without obstacles”
Parents reported that their children are not often invited along to things with their classmates due to perceived behavioural problems. The outings gave them, parents felt, the opportunity to socialise with other children.
“It provided a much needed chance for my daughter to interact with other children during a long summer holiday.”
[See previous outcome for the results of evaluation carried out with the children and young people themselves following the outings]

Case study 1

Amy is new to the Carers Centre. She is a lone parent with a young child with additional support needs. She is isolated, lives far from other family members, and does not have a network of other parents who can support her. Amy reports that she has not gone out with her son for twelve months because of his behaviour. On the first trip Amy attended she met another Mum in a similar situation. The two families are now spending time together, the boys are learning to be friends, and they are planning trips out together. Both mums have acted on advice and tips from other parents, been linked with services via the Carers Centre Parent Support Worker, and appear to be growing in confidence.

Case study 2

Linda has a young son with Down’s Syndrome. David is five and his sister Eleanor is three. Parents Support Worker Anne attended the outings and got to know the children. At Glasgow Science Centre, Anne spent the morning with David, and the afternoon with Eleanor, allowing Linda some one to one time with both of her children: “I got to spend time individually with the kids which doesn’t happen very often”.

In the carers’ evaluation of the outings:

83% said the project had improved their health and wellbeing.
96% said the project had improved their economic wellbeing
88% said the project had improved their relationships

(data based on 31 responses)
As the information in 2.8 strongly demonstrates, the outings provided positive outcomes for carers, siblings, and children and young people with a disability. Parents reported that they had: made new friendships which also allowed their children to play together; made contacts with the Carers Centre, gained support from the Parents Support Worker and attended groups; learned from other parents’ behaviour management; learned from other parents about local opportunities they could access.

Parents also highlighted that going in a group gave them “safety in numbers”, and that they planned to return to the venues on their own or in a small group. The project had given them the confidence to do this:

“I coped with outings that I would not normally attempt.”

The project was shaped by carers’ wishes and their young people’s needs. The project was discussed with parent carers groups and suggestions of outings were solicited. The list of suggestions were researched for feasibility and carers were then asked to vote on a shortlist. Social media, email and one to one contacts were also used to identify the favoured destinations.

Parents were contacted and asked to give information on the needs of their family. This enabled the project worker to anticipate transport, food, support and sensory needs, as well as work in elements that would be attractive to individual young people.

“We were asked at every step about our needs to ensure they were met.”
“We were asked where we would like to go and if we needed extra help.”
“Not only were we sent a small questionnaire, we were contacted by phone to ask if we had any special requirements for the day.”

In the carers’ evaluation of the outings, 86% of carers said they had had Involvement in the process (data based on 31 responses).
The timetable for the project was designed to complement existing provision in the two local authorities covered. This included local play schemes run by charities and the local authority, and the disability sport organisation. Outings were run at times during the summer holidays where there were gaps with no respite provision.

The funding provided one off day trips to destinations within an hour’s travel of the local area. On each occasion, families were provided with information about returning to the destination independently. Several parent carers reported that they had plans to do so together with each other and their children. In this way the project gave parent carers the confidence to use statutory short break provision in a personalised way in the future:

“For twelve months I haven’t done anything with [my son]”.
The trips have given “more confidence about going out in a group or on own”.
The outings offered these opportunities in different ways. These included: learning at the Science Centre, experiencing different animals at Auchingarrich Wildlife Centre, exploring the outdoors and physical adventure at The Yard Scotland. This also contributed to relationship building:

“[my daughter] was seen interacting with her brother in a positive and loving way. This is so nice to see as he is often aggressive at home to her”. Parents reported that their children are often not invited to social events. The outings gave them opportunities to socialise with other children. “My daughter was stimulated and was in a safe environment, it was good to see her absorb so much from the trip and the leaflet sent through the post prior to the event helped explain where we were going.”
The most significant challenge was the level of demand for places. Approximately three times the number of carers and disabled young people anticipated approached the Carers Centre to participate in this project. This meant at times disappointing families who applied for places on certain trips.

In addition the Parents Support Worker’s workload increased significantly through new referrals from parents whose first contact was through the Better Breaks project. This was both an unexpected challenge and an unanticipated benefit.

This was the first time our organisation had attempted to facilitate activities and outings for children and young people with disabilities on this scale and we feel that we learnt much from the experience, gaining considerable knowledge about venues, transport, local support agencies and increasing our awareness of the needs of and challenges faced by families with a child or children with complex needs. We have also developed new links and partnerships with other local organisations and agencies.

The feedback from parents has been overwhelmingly positive and the range of outcomes, as described in this report, have exceeded our initial expectations.

Although we did not identify this as an outcome from the outset, as a result of managing this project, our organisation feels more confident and more able to facilitate this type of activity. We feel we have gained a great deal of knowledge from this experience which would enable us to provide further support of this nature in the future should funding be available. In addition, we feel that the project, including the planning and feedback process, has also helped to develop the confidence and capacity of other local organisations we have worked with, such as venues and transport providers, to make their services more accessible to children and young people with additional support needs.

We contacted service providers in the local community who support young people with additional support needs including:

Schools with additional support needs units
Social Work Services Children with Disabilities Teams
Family Centres
Disability sport organisations
Active Schools workers
Child and Adolescent Mental Health Service (CAMHS)
Sensory Centre
Play centres

We also used social networks to publicise the outings.
As well as publicising the project as described above, we endeavoured to ensure that all outings were fully accessible. This included physical access and an environment that did not prove too challenging for those with sensory difficulties. Accessible transport was provided for wheelchair users. The Centre researched and met particular needs in consultation with parents.

Case study 1

Patricia has cerebral palsy, epilepsy, and a visual impairment. She is in a wheelchair and is peg fed. Patricia’s mother does not drive and travels with her by taxi. We learned during the project that Patricia can be distressed if her mother is not sitting directly beside her during a journey, and researched taxi companies who have accessible transport to suit her needs.

Case study 2

David has VATER syndrome and is unable to eat solid food. We provided suitable food for David at each of the venues.

Case study 3

Owen displays challenging behaviour and also has an attachment disorder. His mother has three other children, and struggles to cope. We provided transport to the meeting point, booster cushions and a car seat in partnership with a local family centre, and dedicated a support worker to the family during the day out.
Staff were always very responsive and easy to contact with any questions. Support was timely and training was offered for each stage of the process. Regarding improvements, more detailed guidance notes on definitions (e.g. ages of young carers, what constitutes a rural location) might help provide accurate statistics.
Evaluation forms were handed out to families after each outing and activity. These were designed to indicate the differences that the project made in specific outcomes relevant to carers. These were also distributed as an online survey via email and on Facebook. Comments and responses from the forms are used in this report, and they also provided the following information about the outings. The data is based on 31 responses from adult carers:

100% of carers said the joining instructions and information were excellent
68% of carers said the transport was excellent
32% said the transport was good
81% said the venue was excellent
19% said the venue was good
71% said the food was excellent
25% said the food was good
4% said the food was poor
Children and young people with additional support needs and their siblings, some of whom were young carers, also completed a separate evaluation form designed for young people. Copies of the evaluation forms are available.

We also held an event that included a focus group evaluation session. We provided staffed activities and a safe environment for young people in order to allow parents to attend. Questions elicited information on the outcomes anticipated in the project plans. At this event we also offered visual opportunities for feedback including ‘dart board’ images where carers and the young people they care for could let us know if various aspects of the project were ‘on target’. Photographs from this event are available.