The Battle to Access Services
Alice the parent of three children all with difficulties within the Autistic Spectrum had felt jubilation when her local authority agreed to provide services under the Direct Payments Scheme. Imagine her reaction when she was then informed that if the children were also to receive residential respite care she would need to fund extra staffing from her direct payments budget and provide supervision for the residential staff involved. To Alice, this felt like being the employer of a small firm having to manage wages, tax and NI, arrange insurance and manage a work rota. Add to this the difficulties in recruiting staff and retaining them on the hourly rate agreed by the local authority. It may not be surprising that Alice sought chemical support from her GP! Other parents have commented 'You're the first person to ask me how I feel' when participating in an assessment of their child's needs. Matt's response to the completed assessment report was 'Have to admit it's a bit of a shock seeing it in black and white but thank you for being so thorough and honest in your assessment'. So what is it parents are asking for, someone to care for their child 24/7, to absolve themselves of the responsibility of caring for their child, to deny their child's existence? Emphatically no. The simple fact is parents of a child with disabilities wants, like all other parents, to enjoy their children, to be able to provide both financially and emotionally for all members of their immediate family and to have a life that is not purely identified in terms of disability. Parents want information advice and support on issues such as a child's developing sexuality, behaviour management strategies and allowing their child independence. Katie asked what will happen to my 15 year old son if I can't stop him 'trying to mount everything he sees, walls statues and quite possibly a young woman not known to us'. Her real fear is that he will become involved in the Youth Justice system when what he and she need is help to understand the natural emotions of any 15 year old. Similarly the mother of a child fascinated by trains expressed her anxiety about how to keep her child and husband safe. 'He managed to climb a fence and get on the railway track. His dad went after him and I thought I would lose them both that day'. There is good work being done for some children with disabilities, The Team Around The Child approach is an example of this. However, in our view it should be Team Around The Family, not just the child. Siblings also suffer as a consequence of having a sibling with disabilities. One 15 year old said of his parents, 'I only ever remember seeing their backs, because they were always needing to do something for him' (sibling), another commented, 'I've been asking for years to go fishing, but there's never time'. Government initiatives such as the Aiming High for Disabled Children programme have put children with disabilities on the agenda and are helping to raise public awareness. The new legislation aimed at providing more short-breaks for children and their families is a step in the right direction as is the focus on housing related issues. There must also be continued emphasis on Local Authority agencies, including education and health, working together to take corporate responsibility for the children they have a responsibility to provide services to meet assessed need. What parents continue to tell us is that in their opinion, the greatest battle is with organisations to provide services designed to meet their child's needs. Parents are not dismissive of the constraints, particularly financial, placed on these organisations. However, when parents delay having back surgery, or cancel hospital admission for vital medication review to ensure there is someone to care for their child, somewhere the system is failing these most vulnerable families. What we hope to achieve through our assessments is for practitioners to look at individual situations and be creative in responding to assessed need, so that parents see agency meetings as places where constructive dialogue can take place, rather than as a battle ground where they need to ready themselves with emotional armour and swords drawn. Rather than 'let battle commence' being the cry let it be 'thank goodness, help is at hand!' Over the years we have become acutely aware that each child and its family is unique. As such, individual plans need to be developed by service providers, children and their families to ensure identified need is met, and for parents not to feel they are asking for something they are not entitled to, or that they are failing as a parent.