THE Geddes family from Ballinamallard are living proof that the policy of ‘one size fits all’ does not work within a social services environment.

As a father of four children with Fragile X syndrome, Eric Geddes was invited to stand before the Western Trust Board last week to share his experiences over more than twenty years. He suggested to them that different priorities within their Children and Adult learning disability services regionally did not accommodate the holistic approach he and his wife have advocated from the very start of their children’s lives.

The very nature of their son’s learning disability and their desire not to medicate them has meant the Geddes’ have had to constantly think outside the box, while challenging the Trust and its Directorate to do the same.

The issue is to do with regional policy and the current legislative framework rather than Western Trust policy.

Their family home has been adapted to provide a comforting, spacious solace for the children to grow up in.

“We want them to have the best quality of life possible,” Mr. Geddes explained, “We want them to be who they are and give them the space to be who they are in their own home.” But putting this into practice has not always been easy.

With two of their children now under the umbrella of the Trust’s Adult learning disability services while their youngest, twin boys, still within the Children’s services remit, their goal to keep their family together is made all the more difficult.

Addressing the Directors and non-Executive Directors last week Mr. Geddes said it appeared to be the case of “never the twain shall meet” when it came to the two services.

“It’s a crazy set up for any family with both adults and children needing support,” he told the Impartial Reporter, “When a child becomes 18 they fall under the Adult services’ remit. “It means they have to engage with a different management structure and get new social workers to become familiar with and understand their needs. “Anyone with a learning disability likes and relies upon familiarity and routine and the relationship and connection that they have built up with other people, often over a long number of years.

“For the parents themselves, there is an element of trust there too with the social worker.

“They are dealing with very personal information. And when you start talking to somebody at that level you have to trust them. It takes time to build up the necessary relationships.

“So to have to start up with somebody new can be difficult.Especially if they have a different remit, which sometimes they do in adult services.

“For an adult with a learning disability there is more emphasis eventually towards care homes or supported living, but for children the emphasis on their care lies within the family home. “When someone with a learning disability moves from children’s services into adult, there is less focus on the family and more on the individual. So that is obviously difficult for families like us as we have always taken a holistic family approach.

“With regard to respite, for example, it would be asking the impossible for a Personal Assistant funded by the adult team to come into our home with blinkers on and not have anything to do with our younger children if they were in need of attention!

“You just can’t have that disconnect when you are dealing with a family.” In their quest to achieve as natural a family environment as possible for their sons, the Geddes’ have had many meetings over the years with the Trust. Wisely a co-ordinator was appointed as an outcome of these meetings to endeavour to bridge the gap between delivery of children and adult services within the home.

But in common with other families they face the bigger question: what will happen to their children when their parents are not around any more?

Undoubtedly the issue needs to be addressed that in the event of a tragedy, would the four boys be able to remain together in their own home?

Child safety issues are of paramount importance within Trust policy.

And as such, children and adults under their care are not placed together.

As a result Mr. Geddes and his wife have been left wondering what this means for their family, should something happen to them.

“If a tragedy was to happen us, it would be compounded for the boys if they were to be separated or lose their family home and the familiarity and comfort that it provides,” he said, There is a strong family bond that exists within any family.

“Social services policy that children and adults should be treated separately make planning for the future complicated. Currently there is no change in Trust policy.

“The Trust have been very supportive of our aims and what we are doing and have given every assurance that they wouldn’t want the boys to be separated. Senior management on visiting the home environment have commented ‘Why should anyone think it right to move them from their present setup?’.

“The goodwill and assurances from the Trust have been very welcome but it would occur to me, are their hands tied should the unthinkable happen?” Mr. Geddes likened the necessity to plan for the future like taking out car insurance: “You take it out without ever wanting or expecting to have to use it. I guess we plan for the future but we don’t plan on it either!” And in the meeting with the Trust last week he used the analogy of a wheel on a bike to explain how, at the moment, he and his wife are at the very hub of the care provided to his children, while the spokes radiating out are those providing the care and support network to keep the wheel of the boys lives rolling.

He said that currently, the wheel only rolls with the boys’ parents at the centre.

He encouraged the Trust to continue to find a new way of making the wheel turn for the children should the parents no longer be able to be at the centre.

Looking to the future, families like the Geddes’ are relying more and more on the Trust to provide support to enable Personal Assistants to help with personal care for their boys in order to prepare them for a day when their parents are less involved or perhaps no longer about.

And they are exploring the novel idea of actually moving out of their home themselves, allowing the children to remain in the environment they have always been used to.

“For the boys it has to be a seamless transition,” explained Mr. Geddes, “And it would be a lot less traumatic for them if we move out instead. At the moment there are no guarantees as to what would happen if we were not around,” he added, “A model of care needs to be developed that encompasses brothers who are both adult and children and thankfully the Trust is working with us to explore what’s possible.”