Short Break Stories

Families Programme

A story by Angus Carers Centre

Our Families Programme provided a planned programme of events and activities for parents or guardians who have a child with additional support needs and their siblings.

The programme allows families to participate in events and activities in a safe, secure, supported and fun environment without fear of judgement or discrimination.

What Families Programme did

We have held 63 activities within 7 localities in Angus. Our programme is advertised in newsletters sent to the 224 carers registered with our programme, an increase of 34 carers this year. The programme has included, weekly hydrotherapy pool sessions for up to three families at a time which has proved extremely popular.

Multi-sport sessions, supported by the Angus Alive Disabilities Sports Coordinator, held monthly in two different locations. We have recruited two volunteers to help at these events and two sessional staff. The regularity of multi-sport has given children with additional support needs the opportunity to grow in confidence while their carers, supported by a Families Programme worker, sit in a relaxed environment chatting and exchanging valuable ideas and information.

Trips to Noah’s Ark, a family entertainment centre in Perth, Muddy Boots Farm in Fife, Avertical World, (Indoor roped climbing) in Dundee and a cycling festival where adaptive bikes were available. a bouncy castle party, a family fun day. A Stay and Play ‘Winter Carnival’ themed day with Igloo, stalls, cookie decorating, and sparkly nail painting for all, was held in our premises and was a big hit.

The programme ended with a second visit to an autism friendly cinema as the first one had proved so popular. Most events can accommodate everyone who would like to attend but if oversubscribed we allocate on ‘need of support’ and ‘frequency of attending similar events’. Letters would then be sent confirming places and detailing what to expect on the day. Our allocation of administration support is vital to the compilation of the newsletter and all other administrative duties associated with the programme.

Events were evaluated and we introduced a charging policy for the more expensive activities to supplement funding with a view to encouraging sustainability of the project. We also compiled an evaluation of the Families Programme towards the end of this year, to assess the importance of providing this kind of support to carers.

When we first met this family, things were difficult. With a pre-school age child with Autism (and suspected ADHD) and a husband who has a rare condition which makes his body shut down physically and mentally, mum was finding life exhausting. Their caring roles are constant without any breaks. Their son seeks constant sensory feedback which often puts him at risk.

Since engaging with the Families Programme the family have seen huge changes in their son’s ability to participate (now age 4). When he started coming to our Sportzone sessions he was unable to participate in any of the activities due to his sensory need to run around and his inability to concentrate and wait his turn. His parents would provide his support regardless of what other options were available (such as volunteers and project workers). Jump forward a year both parents are more able to take a step back and their son is spending some of his time at our activities with volunteers and other young people.

He is participating in team games and learning how to have fun with others. Mum and dad commented at a recent soft play event that that, “This is the first time ever that we have sat down together with a cup of tea at a play centre”. This trust has also enabled the wider Angus Carers Centre services to support the family in other ways, such as transition to school and funding to furnish an outdoor sensory hut at home.

This family attended our ‘Cycling Festival’ during the summer holidays which offered children with an additional support need the opportunity to try out different forms of adapted bikes. These particular parents had never seen their 10 year old son (who has Autism and Dyspraxia) ride a bike before.

The smile on his face could not be ignored. Following this experience and the benefits they saw, funding was pursued and secured which allowed the family to purchase a fully adapted bike specifically fitted to meet his needs. Their goal now is to support and enable him to use this to travel independently to school.
A 13 year old boy who has accessed the Families Programme from the beginning has recently been having many difficulties at school. This has now escalated to the point where he has had to move secondary school out with his catchment area and he is on a part-time timetable. Things have also become so tense at home that he now has social work involvement which provides respite away from his home periodically to lower the pressure.

Yet within the Families Programme he is thriving. We have unofficially ‘promoted’ him to be a volunteer at our activities (unofficially as we didn’t want him to feel any pressure by this ‘title’). When he puts his identification lanyard around his neck he assumes responsibility naturally and takes on a very important support role. His parents have told us that this environment is providing him with the positive experience that he is lacking elsewhere.

To consolidate this further, the parents of the young boy mentioned in case study one gifted him a small present at Christmas to thank him for the support he had given their son throughout the year at our events. We believe this evidences peer support at its finest.

What Angus Carers Centre has learned

Parents, their disabled child/ren and their siblings want this service. This fund has allowed us to continue providing regular activities and larger style trips for families, with a child with an Additional Support Needs, in the Angus area. This was also part funded our Carer Development Worker post, allowing them to carry on providing 1:1 and group support to many families. This support has proven to be an essential element to the families who attended, and continuing to attend our programme. 34 new parent carers who registered with the Families Programme brings the overall number of families involved in the programme to 224.

The challenge faced with such large numbers of families registered, is maintaining a high standard of support with limited resources. We are helped to achieve this by evaluating at every event that we run and actively seeking feedback from the families involved, to make sure that the service we are providing is meeting the requirements of those in need across the different localities in Angus. We now have a dedicated Families Programme Admin Worker and Families Programme Worker working alongside the Carer Development Worker to ensure all aspects of the programme are covered, from planning and facilitating events, recording and evaluating, newsletter production and allocations, budget management and volunteer/sessional staff, to the CISP/review process and 1:1/ group support.

The management of places at events has become more complicated with growing numbers, and we have had to be realistic about the amount of families’ allocated places at each event, trying to keep costs manageable. At some of the larger events within the programme, we introduced a charge per family/person which parent carers were happy to contribute to. This allowed us to save against the cost and so provide an extra event or purchase play equipment (ball pool and balls, play parachute, arts and crafts materials) to make use of at future events.

We have observed greater levels of enquiries generated from event attendance. Parent carers are using the time at events with our workers to raise queries or issues, which can serve as a benefit, as it helps identify those who require more support allowing caseloads to be effectively prioritised and managed, and with over 220 families registered, this has proved very beneficial.

We strive to offer a service that includes as many families as possible while maintaining a personalised aspect to an ever-growing programme. We have achieved this by being reactive to the suggestions from parent carers and doing that little bit extra to ensure enjoyment and inclusion for all. At events where food is being provided we make sure that all dietary needs are catered for, we provided coach transport to the events out with the Angus area, text reminders are issued prior to events allowing cancellations to be made and places allocated to other families, we take photos throughout our events and have passed these on to families afterwards, giving them reminders of their family days out.

Families are introduced to each other by the workers. This provides a start to families developing their support networks. Our Carer Development Worker liaises with families at each event to keep track of individual situations. Parent carers use this time to raise queries or issues which help the workers identify those who require more support allowing caseloads to be effectively prioritised and managed

This programme continues to support our ethos of developing a ‘whole family approach’. Staff from the Young Carers Team and the Adult Carers Team now work together much better when they are supporting different members of the same family. The staff will also arrange more formal internal case conferences to discuss support strategies when working with families with multiple challenges.

Local venues and commercial programmes are becoming much more aware of the needs of families with a child with a disability or an Additional Support Needs and are becoming more confident in providing and adapting their service for the families. This awareness progresses our original aim of supporting families to access local leisure and social activities without formal support.

The Families Programme has provided us with a foundation to build partnerships with some national organisations e.g. National Autistic Society who did not have a presence in Angus. We now liaise with them to ensure the parent carers we have contact with can also access support from them.

In Angus we now have a new structure which manages traditional council leisure and sport facilities, called Angus Alive. This has required us to begin to build up relationships with new managers and review the original partnership agreed with Angus Council. Initially Angus Council had agreed to provide venues for our Sportzone free of charge as it was an inter-agency programme. Angus Alive now charge us for use of their facilities. This has added challenges with partnership. Being reliant on others to provide quality events for our families has caused some issues when it comes to regular activities and block bookings.

Our relationship with the local Disability Sports Coordinator and Leisure Services is a work in progress, as their timetable and scheduling has meant that we are not always able to get regular dates for the activities that we run in conjunction with them, and at times providing suitable coaching staff and cover has been a problem, these issues don’t happen often but there is a knock on effect to families.

As the Families Programme expands and more challenges are faced there have been great benefits, parents have been actively involved in the planning of events and have grouped together to organise activities between themselves, a great wealth of knowledge has been exchanged between families, from sharing experiences of other services and support available, to trading tips on booking holidays, purchasing sensory equipment, and other valuable information.

We have seen the children involved in the programme grow in confidence and take part in things that they wouldn’t have previously done. Some families have also expressed an interest in organising fundraising events to ‘give back’ to Angus Carers Centre.

“I feel hugely less anxious attending events run by the Families Programme, the safe environment is so important. My son has been able to take part in mainstream sports at school sometimes since attending the Sportzone sessions. He now manages mainstream swimming lessons since attending Hydrotherapy. The supported activities really promote engagement in activities.” – Parent carer comment on an event evaluation form.
Top tips Angus Carers Centre's top tips for an organisation that wants to run a similar project
Tip 1:
Grow your support services and programmes from the ground up. Families know what they need and want, but sometimes haven’t been given the time or space to tell anyone this, (or they have tried but haven’t been listened to).

Building on the premise that carers are the experts in their own lives, a family programme support parents and children to recognise their expertise and find solutions to their own issues. This works only if you ensure you have a back-up plan.

Factors can change so quickly, especially when working with children with additional support needs, so be prepared for anything. Get to know your families and what their children triggers are, even just have a ‘quiet area’ at events that can be utilised if needed.
Tip 2:
Sometimes it is just about keeping it simple.

The programme has to give families the time to have fun together, and build friendships with other people they meet. Make sure you have a bank of volunteer and/or sessional workers that can get involved with activities and events. It can take quite a few people to make an event run smoothly, so make sure to have plenty of people you can rely on.

Staff and volunteers need to be skilled at knowing when to lead and facilitate and when to provide a lighter touch to help parents and children’s fill this role themselves. The events don’t have to be overly complicated or expensive, just an opportunity for people in similar situations to come together and share in a fun, family experience.
Tip 3:
Don’t stop networking!

Support for the programme can come from the most unexpected places if you put yourself out there and ask for help and support. i.e. “Greggs”, (other bakeries are available!) supplied hundreds of quart milk cartons for our winter igloo.

We put a shout out though our newsletter for Lego to be donated to use at the play sessions, we now have a very healthy supply of Lego! People are very kind and willing to help, if you give them the opportunity.