Who Will Care After I'm Gone?

FitzRoy share research undertaken with parents and care professionals supporting people with learning disabilities, to better understand the worry and anxiety they face.

Author: Fitzroy

An Insight Into the Pressures Facing Parents of People With Learning Disabilities

Anna Galliford, Chief Executive of FitzRoy writes in her introduction to the report:

"As a charity working day-in and day-out with people with learning disabilities, we are acutely aware of the pressures and challenges that they, their families, and the care professionals who support them routinely face.

While researching our last report, A Plan for Life, a number of parents we spoke to were so profoundly worried about what would happen to their son or daughter when they were no longer around to look after them, that they sometimes hoped their children would die before them. Shocked, I asked others within FitzRoy if they had heard that sentiment before and was told it wasn’t unusual.

That’s why we have undertaken this research with parents and the care professionals who support people with learning disabilities, to better understand the level of worry and anxiety that can lead parents to such a desperate point of view. We held a series of focus groups to hear from parents first-hand, as well as conducting a survey with care professionals to get their perspective. We also held in-depth interviews with parents to capture their personal stories more fully.

The findings we have drawn out from that research paint a depressing picture for the current system of support for people with learning disabilities, writ large in the desperation of the people who are closest to them. It is clear that a great deal of anxiety about the future comes from the difficult reality of the present."


Find out more about FitzRoy and their work here.


The publisher is FitzRoy.

Who Will Care After I'm Gone? © FitzRoy 2015.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.

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Paper | 20.01.16

intellectual disabilities, social care, Paper

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