For a young person with a learning disability, preparing for adulthood is a time of change and uncertainty. My son is seventeen and has Down syndrome, with complex medical and communication needs. He needs round-the-clock adult support which means he has to access multiple different services.
Medical care for people with learning disabilities can be problematic, and it is important to have reasonable adjustments in place. We have been fortunate. Our hospital has a Transitions team specifically to support the transfer from paediatric to adult services. They were friendly and approachable, and I felt heard. More importantly, they took time to get to know my son and they involved him fully in the preparation of his hospital passport. When he had emergency treatment at the hospital, the Transitions team called me a couple of days afterwards to see how he was, and asked if there was any way they could help. They also signposted me to videos to help my son prepare for his forthcoming surgery. This support was so welcome. The paediatric clinic and children’s ward at the hospital routinely use visuals to explain what will happen with appointments and procedures. I wish these arrangements were standard practice, but they aren’t. Sometimes, even small adjustments like the visuals can make a real difference. I still have anxieties about how my son’s care will be managed on an adult ward but having access to the Transitions team makes this less scary.
My son has an annual Learning Disability health check. Again, we are fortunate with how well these are delivered at our GP’s surgery. The Learning Disability nurse has known my son since he was a baby, and she engages with him directly. Sadly, at some appointments, medical professionals barely acknowledge my son’s presence. Anecdotally, I have heard that Learning Disability annual health checks can be a tick box exercise, but for my son they are respectful and thorough. I suspect that families do not necessarily know these health checks are available. A young person needs to be registered as having a learning disability with their GP to access these checks.
Post-sixteen school transfer was difficult, and I am already mentally preparing myself for the next phase transfer at post-nineteen. Fortunately, my son is now settled in his chosen sixth form with the appropriate support in place, but the process nearly broke me. We had twelve months of uncertainty about his sixth form placement. A full year of sleepless nights and anxious days. Dreadful for me, but worse for my son, who needs routine and certainty.
As he approached his sixteenth birthday, we had to negotiate the transfer from Disability Living Allowance (DLA) to a Personal Independence Payment (PIP). Due to the nature of my son’s needs, I was made his DWP appointee, and the application ‘just’ required me to fill in the forms. This is a distressing process, because it forces you to focus intensely on your child’s difficulties. Completing the PIP forms dominated my summer. Three weeks before Christmas, the DWP wrote, saying my son was ‘not eligible’ for PIP at all, while awarding him easily enough points to qualify. This was clearly an administrative error, but it wasn’t trivial to resolve, and took several lengthy phone calls to the DWP. As my son’s appointee, I was able to challenge the DWP’s mistake, but it concerns me that a similar letter could be sent directly to a vulnerable sixteen-year-old claimant.
My son has been referred to adult social care, but it’s uncertain how this will look for him. My questions are generally met with vague responses and the observation that things ‘work differently’ with adult services. Social care will be an increasingly important part of my son’s support package, particularly when he turns twenty-five and his EHCP runs out. I would love to feel confident that he will have access to person-centred, needs-led support, but for now all I feel is uncertain.
Preparing for adulthood is a complex time, sometimes with multiple agencies involved, and it can feel overwhelming. It helps if professionals are sensitive to this and recognise that it is a complicated time for families. Clear, relevant and easily-accessible information is key. It concerns me that the issue of capacity is not given enough attention, because this has huge implications for every aspect of life.
During these challenging months, I have been sustained by the support of other SEND parents and the camaraderie of shared lived experience. It has been an absolute joy watching my son develop into a wonderful young adult. He educates me every day with his ability to live in the moment and live his best life with such determination.