Recently I was asked to present my view of the developments in services to people with a learning disability over the years since the inauguration of the All Wales Strategy. My view is from the perspective of a parent of a son with severe learning disabilities. I expect I was chosen to represent this viewpoint as I moved my family into Wales 30 years ago precisely to be a part of that new and exciting Strategy. The stated philosophy of the AWS exactly mirrored my view of the kind of future I was hoping for my son and the type of help we would need to get him there.
Moving into Clwyd in 1984, our first contact with services was all we could have hoped for. Meetings about our son’s requirements were always multidisciplinary. In our previous home town of Bolton we always had to be the conduit of information between Health, Social Services and Education. When Health was telling us he needed to be in a school providing a physiotherapist at least three times a week, Education offered us a school where he would receive physiotherapy fortnightly! We were left to try and reconcile these opposing views of what was in our son’s best interest. In Clwyd, we felt that, for the first time in his five years of life, all the professionals involved with him were on his side, working together to help him make the best of his life.
The other most important service accessed by us was the Family Based Respite Care Service. This service I credit with keeping our family together through some very tough times. Between the ages of 5 and 11, and then 11 and 19, our son was cared for by two families on a respite basis. Crucially this allowed us to spend some quality time with his two siblings doing all those things that are especially difficult to do with someone in a wheelchair and whose behaviour could be challenging. The importance of time out from caring duties cannot be over-stated.
Another very important development introduced by the AWS was the involvement of the parent groups in the planning and coordination of services. Parent representatives were welcomed on to Joint Secretariats and sat as equal members. Furthermore, they were offered training and assistance to help them carry out this role effectively. The money available to counties for new services to be developed under the AWS would only be released if it was shown that parents had been actively involved in the planning of those services. This was very important as it ensured the participation of families in their service plans.
The AWS raised the expectations of every family. It promised life choices not only for the person with a learning disability but for the family members too. Siblings and their needs were also recognised as deserving of consideration for the first time. Parents were told that all services for their child would be needs-led and not cost-driven! They were told that costs would be covered by huge savings made from closing vast and costly institutions. The AWS said our family members deserved to have their needs met in their own homes, be surrounded by their own friends, and have meaningful things to do with their time. The key word was CHOICES.
When the AWS formally came to an end, our son was 15 and we were embarking on discussions about his move into supported accommodation at the age of 20, following the end of a college course. We started to have some concerns that we might have ‘missed the boat’ for adult services now that there was no new money on offer. It started to feel that agencies were beginning to retreat into their individual bunkers arguing about who was going to pick up the bill for a particular service rather than being needs led. Joint working seemed to fall apart when joint funding disappeared.
At more or less the same time that the AWS funding ended the county boundaries changed. This caused some problems for families like ours. Some of our children wanted to attend a specialist school or college that was now considered to be ‘out of county’ and therefore not always approved. Parents of a person with a severe learning disability are in a tiny minority in a large county, they are in an even smaller group in a small county. This had a large and detrimental effect on many parent support groups and therefore on the effective representation of the parental viewpoint at county level. This was further exacerbated by the separation of Children’s Services from the Adult learning disability service. A severe learning disability is a life-long condition so it didn’t really make sense to me to separate younger families from older ones. It interfered with the sharing of support and advice. It also meant that when young people transferred from Children’s to Adult Services some difficulties were encountered, there being different criteria for accessing support.
By the time our son reached 21, he was in his own home, shared with two other gentlemen, and supported by his own staff. He and we were and are very happy with that. However, his journey into the house was tortuous, involving many irate meetings and a formal complaint … but that’s another story!
During the last ten years I feel that so many of the good things developed during the AWS have sadly been allowed to wither. The County Planning and Co-ordinating Group has been replaced by a mere Advisory Group. Parent representatives have nowhere near the amount of influence they had during the AWS years. New projects seem to go to some kind of ‘Secret Panel’ for funding. There are no family or voluntary sector representatives on this! Counties are now moving towards ‘cross-county commissioning’. How will the parental voice be heard or represented when we have no equivalent cross-county body? This concerns me greatly. It feels like a backward step for participation.
Nowadays, there is little or no training for parents and we seem to get invited to participate in very few training events for the professionals we encounter. In the Strategy days there were many interdisciplinary events and training days which included members of the voluntary sector and family members. Parents are no longer actively involved in the formation of services.
I find it shocking to come across workers in the field of learning disabilities who have not heard of the All Wales Strategy. It should not have been relegated to a part of history. The fundamental principles of the Strategy have continued to be adopted by governments, both national and local, and as such need to be clearly understood by everyone at every level in every service working for a person with a learning disability. As in every aspect of history, if you do not understand and learn the lessons of the past you will continue the mistakes into the future.
It is crucial for everyone to understand that principles are not reliant on budget. The principles of the Strategy still apply regardless of the money available for spending. Every policy, every protocol, every service and every action affecting the life of a person with a learning disability should still be underpinned by these principles.
I trust the people working with my son, otherwise they wouldn’t be doing so, but I am watching closely!