• Barbara


Now that the Christmas break is over and things are returning to ‘normal’ I find myself with a list of people to contact and chase for my daughter. I feel like we are returning to the same treadmill, but will have to work and fight harder for services as funding and resources continue to diminish and disappear before my very eyes. I want to feel refreshed and positive, be upbeat and engaging with professionals, feel listened to, have my questions answered, at the very least have my calls returned, but sadly that is not how it seems.

My list involves contacting my daughter’s social worker to chase her direct payment outcome. Before Christmas an intermediary payment was made to cover the existing PA until the end of January, this is fast approaching and I have not heard if a panel has met and a decision reached. Before Christmas I learned that all but one of the ‘panel members’ were off sick and so there was no one to make funding decisions. At that point I felt lucky that at least we had something in place for my daughter and was not waiting for a new package. I found myself thinking of all the families waiting for an outcome for some support for their child, the difference a positive outcome could have, and the frustration at your situation being held in the hands of managers, who were not able to work and fulfil their role. I wondered what happened to the backlog was there a point when no further assessments would be made, or would managers from other social service areas, i.e. adult services, be called to sit as part of the panel and make those important decisions. Is this a Local Authority in crisis? Are there other LA’s in similar situations? So today I shall make that call, try to be upbeat and enquire as to the whereabouts of my daughter’s renewal for direct payments. If there is no panel in sight I shall ask what next, and try not to worry. My daughter benefits so much from her time with her PA, she is making great progress in planning and decision making in what to do, where to go, taking some responsibility for directing the PA. The social worker assures me the panel process is a formality but until I hear for sure I remain anxious and reluctant to commit to more hours past the end of this month.

My daughter and I have been given a Health Passport to complete, so that her contact with, and transfer to adult health services is smooth and she can be supported when attending appointments. It appears on the surface to be an ‘easy’ document to complete, and hope that the more thought and effort we put into it the better a working document it is. Our move into adult health services is challenging our way of working with my daughter and we are encouraging her to be more independent in appointments and to plan in advance what she would like to say and ask. The problems encountered with this so far is doctors are pressed for time and clinics are busy so my daughter doesn’t always have time to collect her thoughts and say what she wants to. Although one consultant has begun to make reasonable adjustments and will meet my daughter prior to clinic in the cafe, as an informal and less stressful environment. The Learning Disability nurse will join them and parents will sit at another table, to be on hand if needed. This feels like a step in the right direction and the consultant wants to make my daughter’s experience at the hospital as positive as possible.

So I shall put a smile on my face, look for the positives and challenge where necessary, well for today anyway!!


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