Comment: Disabled children now have proper support

AN innovative – and now well established – support service is helping learning disabled children to lead fulfilling lives, says Carol Iddon

Children at Gilmerton Road enjoy a wide range of support  everything from behaviour and sleep programmes to trips to the cinema and days at the beach
Children at Gilmerton Road enjoy a wide range of support  everything from behaviour and sleep programmes to trips to the cinema and days at the beach

In April 1998, Action for Children Scotland launched Gilmerton Road, an innovative new service which supported learning disabled children and their families in a home-from-home setting. Our 1930s cottages, with their gardens and sensory room, were a welcome change from the large disability hospitals that families were used to, and in our care children flourished.

We can support up to 40 children at a time at Gilmerton Road, often from the age of seven until they are 18 years old. All of these children have high levels of significant need; the majority are non-verbal, and two-thirds are on the autistic spectrum. We offer a wide range of support – from psychological services to outreach work, to help at home, to behaviour and sleep programmes. We also hold trips to the cinema, swimming, and days at the beach.

These activities can be difficult for learning disabled children, who may lack an awareness of danger and don’t always understand the rules of society such as queuing, paying for items in shops and sitting still in the cinema. On our trips we operate a system of at least one worker – and often two – to each child, but this level of supervision isn’t always possible for parents, especially those with other children.

We make “normal” pastimes, which many of us take for granted, possible for the families we support.

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One of the most important elements of what we offer is residential short break care, perhaps better known as respite care – a term we avoid at Action for Children Scotland. The dictionary definition of respite is “relief from toil”, and while we do offer parents a deserved break from their caring role, this narrow description does not recognise the benefits to the child. Our overnight stays allow children to develop new skills, socialise, and gain independence. It’s very important that they enjoy spending time at Gilmerton Road, and we know they do, but the focus is always on helping children to learn and develop.

Since it launched, Gilmerton Road has cared for hundreds of children from Edinburgh and the Lothians. We have introduced new foods to the restricted diets of autistic children, helped families who struggled to get more than three hours sleep a night to plan bedtime routines, and supported learning disabled children to have fun in their own communities. We made a real impact by offering a radically different kind of support – and we know that in order to continue to have this impact, we must evolve to meet the needs of children today.

We are about to launch an exciting regeneration project that will transform the service and make sure the space and facilities really work for the children we support. This will include increasing the kitchen and utility space so we can teach independent living skills, and creating a new living area. Our current living area is housed in a conservatory, and over the years we have come to understand that this really isn’t the best environment for learning disabled children, who can become distressed by the fluctuating temperatures. We also plan to introduce long-term accommodation in a three-bed bungalow on the grounds of the service.

There is currently limited provision in Edinburgh and the Lothians of this type of accommodation – which may be needed when families are feeling the strain of caring for their child – and learning disabled children are often cared for out of the authority, sometimes as far as Aberdeen. This makes visits difficult, causing further upset to families who are already facing painful circumstances. Action for Children Scotland offers this type of accommodation in Glasgow, where three children have been given a nurturing and therapeutic home. We know the model works, and we know we do it well. I believe the bungalow will be a valued addition to the provision for families with learning disabled children in the area.

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I’ll be honest: there will be some disruption to the service we offer over the coming months as we make these significant changes. But by doing so we will be in a much stronger position to offer the best possible support to families in Edinburgh and the Lothians – support that is fun, inclusive, and flexible, and that gives learning disabled children the skills and tools they need to live fulfilling lives.

Action for Children Scotland needs to raise £375,000 for the Gilmerton Road Appeal. To find out how you can help, please email [email protected]

• Carol Iddon is director of children’s services at Action for Children Scotland

www.actionforchildren.org.uk

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