The following letter is from Janie Shaw of Carmarthenshire who tells a very disturbing story:
I am deeply concerned with the forthcoming closure of the Welsh Independent Living Grant (WILG).
My husband Lon, suffered a brain haemorrhage in 1986 at the age of just 34. The Independent Living Fund (ILF) became a lifeline to us. It enabled us to live independently in our marital home like any other couple. Unfortunately, the ILF was closed by the UK government back in 2015 although recipients based in Wales have received WILG since that point. It has caused me a great deal of stress and exasperated health concerns of my own in my 68th year to know that this funding is due to come to an end on March 31st 2019. I do not feel that I will be able to deliver the standard of care that my husband requires without the assistance of our invaluable team of PAs.
My husband recently had a reassessment by our Local Authority (Carmarthenshire) which threw up a number of pressing concerns. The social worker involved commented that the ILF – and by extension WILG – created neediness in people, which I found absolutely disgraceful. Someone in her position should realise that it is disability that creates the need. These needs used to be met by the ILF and WILG.
The Social Worker had no appreciation whatsoever of what is involved with my husband’s daily care. She maintained that a PA was unnecessary to accompany myself and my husband to a hospital appointment. For his last appointment I had to leave him in the foyer with a PA whilst I went to find a parking place. He has no speech and no mobility, how could I leave him on his own in a busy and confusing place? In the past, I have also been able to benefit from overnight support enabling me to have some respite. I don’t want to put him into a clinical care home as this hasn’t worked out in the past.
WILG funding meets Lon’s needs regarding the quality of his life and independence. His PAs really understand his needs and how his needs are best met. The withdrawal of WILG funding and the loss of the tripartite system will have very negative consequences on both our lives. I feel totally unsupported and should not have to negotiate a care package solely with my Local Authority. I feel that the assessment by the council failed in many ways. This is a heartfelt plea to those with power and influence in the Welsh Government to save the Welsh Independent Living Grant.
Janie Shaw, Carmarthenshire
