• Barbara


Last week I found myself, in a professional capacity, in a position of observing care being ‘given’ where needs had been assessed and time allocated to complete said care. The allocated time left very little room for delays or changes in routines and discussion of preference to take place. In fact the carers

spent quite a lot of time furtively glancing at their watches to see how much time was remaining to ensure all care tasks were complete.

This led me to asking questions of what the options may be for my daughter regarding receiving appropriate support and assistance as she nears adulthood.

Reflecting on my observations and conversations with the carers, the person I saw being supported was seen by them as fussy, wanting things done in a certain way and expressing favouritism towards certain carers. I challenged the description of ‘fussy’. Why shouldn’t someone direct you in how to support and assist them in a way that they find comfortable, ensuring that all they require for the night is within reach, in the usual place, so they are easy to locate when needed? After all there will be no further visits until morning. I too would be specific on how I like my cornflakes in the morning, too soggy or too dry, too large or small a portion would be important to me. Why is that a surprising request I asked? I’m not really sure I received a proper reply. Was the way the lack of response down to poor training and understanding of personal choice, poor attitude of the particular staff members, a lack of understanding or organizational institutionalisation? So many options to consider. So was the favouritism of staff due to their professionalism, friendliness or simply being in tune and as flexible as possible? It appeared that the ability to complete the bedtime routine in the allotted time, have a ‘wee chat’ and not appear rushed was their talent. They managed to keep track of the time without looking at their watch, using the clocks in the room as their guide, and if needed to, stayed that extra couple of minutes to close the curtains. The personal touch, that showed thought, understanding and respect.

The disabled person was privately assessed for their support, and privately funding the care they received. So to me, there should be plenty of room for movement in time available to assist personal care, but instead it was exactly how I imagined and have read, how care agencies are. Would a statutory assessment have given a different outcome? How about using direct payments, or a private version of it, and employing your own PA’s with some flexibility in how support and assistance is carried out? For me, I wasn’t convinced that the time assessed for the tasks to be completed was sufficient, so whoever was supporting and assisting would not have the time or opportunity to offer any more than the basic needs met.

This whole experience has left me wondering and worrying what the future will hold for my daughter. Will she have the flexibility as a young person to decide when she goes to bed, who helps her with this; will there be the time for a chat and a possible change in routine? Will there be someone who shows her respect and prepares her breakfast as she likes it, not how they like it, or perceives this request as fussy. I’ve found myself dwelling on what her future will look like in the current cash strapped culture, where there are fewer and fewer resources available and more people asking for support and assistance to be delivered in a way that suits them. I must admit I’m pretty scared of what that future will look like, but I’m prepared to fight for my daughter to live her life as she wants to, with choices and opportunities available to her. Wish me luck……….


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