If you are a WILG recipient, carer or a health professional you can send us your experience of how the impending loss of the Grant has affected you personally and the people you know.
This is not confined to those affected by WILG but others who support the campaign from afar and have experience of other independent living schemes across the UK.
You can send a written account, a voice recording or a video. You can send us the file of the recording or video or the like to where you have uploaded it by email to firstname.lastname@example.org. Please let us know how you would like to sign your experience.
All voices count and will be part of the final document. You can also choose if you would like your experience to be published on this website (remember it will also be shared on social media) or not. You can sign your voice the way you prefer, you do not need to use your real name.
We won’t disclose your identity or give your email address to anyone without your consent.
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