When my son Craig, who had profound and multiple learning disabilities and complex health care needs, reached the start of transition into adult services at aged 16, I looked at the life I wished for him after school, and which I believed he wanted. My husband and I were granted Welfare and Financial Guardianship so that we could legally make decisions on our son’s behalf.
At the time Craig received Direct Payments and funding from the Independent Living Fund (ILF). I wanted him to have the opportunity to continue his personal development and also knew his school had a very good relationship with the local college. We discussed this option and the school staff supported our application for Craig to attend. Following a visit by Craig and I, he was enrolled and attended a drama class. He went on to participate in a part time course in cooking, drama and communication and disability sport, which meant he attended college for one and a half days per week.
We were considering other opportunities for Craig and I looked at local day centre opportunities, but sadly, at that time, he could not attend the one nearest our home as it was within a different local authority area. We chose our next option and Craig began a 3 day placement. However, the day centre staff were unable to provide the necessary one to one support and so carers, from an external agency were employed to provide this care. The agency was unable to provide one regular carer, so Craig received his personal care support from a number of different carers. He quickly became distressed with this arrangement. Following negotiation with the head of learning disability service, I managed to use a Direct Payment to employ Craig’s lead carer to provide this care. This worked brilliantly for Craig.
Craig had received respite for one weekend every six weeks. However, when he turned 16, he was too old to access the service. We had to discuss what type of respite he would most enjoy. A respite centre had been identified and was available but I knew that Craig would not enjoy his time there. We met with Craig’s care manager and through further negotiation agreed that a portion of his Independent Living Fund and his Direct Payment money could be used to pay for 2 stays of 5 days a year at an outdoor centre. This was a fantastic way for Craig to spend his respite time and was more fitting for a teenage boy. We were also able to arrange that his support at weekends would be provided by his home care staff so that he could access the things he enjoyed in the community. This included activities such as visits to the cinema, and classic car shows. We as parents also benefited from this arrangement, as we knew Craig was happy and well cared for, so it was a break for all of us. Every few months, Dave and I managed a weekend away while his carers looked after Craig in his own home. We were lucky to have a team that we trusted in every way.
Craig became more fragile and eventually fell seriously ill, requiring palliative care. His well-trained care team supported him in the hospital and then in our home 24 hours a day. Having this level of support enabled him, when able, to enjoy every day even when he could no longer attend his Day Centre. We were also able to renegotiate the day centre funding to be transferred into his Direct Payment package so that his lead carer could provide Craig support in our home. This holistically caring arrangement continued until he passed away in 2008 in his own home, with family and carers with him.