Concerns over planned changes to care for people with disabilities and worries for the future have meant a miserable Christmas for an Ammanford woman and her chronically disabled husband.

 Lon Shaw, a radio astronomer who worked alongside the astronomer royal in Cambridge before moving to Wales to become a tree surgeon, has relied on funding from the Welsh Independent Living Grant (WILG) to enable him to continue living in his home following a devastating brain haemorrhage more than thirty years ago that left him without speech and mobility.

 The grant has supported a small team of part-time carers who provide ongoing support to his wife Janie, helping with the round-the-clock attention that he needs.

 His condition requires help with every aspect of his daily living from feeding and personal hygene to escorting him to medical appointments and using a winch to move him in and out of bed.

Now WILG is to end in March this year (2019) and the budget handed over to local authorizes to administer. However, following a chaotic assessment that she says has led to her suffering increased stress, depression and on-going nightmares, Mrs Shaw believes councils are using a reassessment to withdraw support and make savings to their budget.

 “The first assessor who came to visit us clearly had no idea of the work involved.” 

 “She seized on the fact that he was briefly able to drink from a cup as evidence that he could feed himself despite our explaining that this was a very rare event.”

 “Help with taking Lon on his regular trips to hospital was also dismissed saying that it was quite safe for me to leave him unattended when parking our car despite his history of wandering off in his motorized wheelchair without supervision and getting lost.’

 “It is evidence of his childlike and mischievous nature but he is unable to understand what harm he might come to.”

 “She also upset me by claiming that the WILG had created a neediness in people.  That’s an absolute disgrace!  It is Lon’s disability that has created the need for help and the fund has been able to meet those needs.  But even with help his care leaves me exhausted.”

 Recently the council had agreed to a second assessment, responding that the first assessor was “inexperienced”. However, that assessment was cancelled at short-notice leaving Mrs Shaw on tenterhooks over the Christmas and New Year period.

 “His current funding supports Lon’s quality of life and independence,” she says.

 “His experienced carers really understand his needs and how they are best met.  Any reduction in funding for home care will have very negative consequences on both out lives.”

 “It is too horrible to think about but if his care package is withdrawn he would have to go into a home which would cost far more than the help he is receiving at present and leave me devastated.”

 For more details please contact Janie Shaw through Nathan Lee Davies – via the contact page, Twitter or Facebook. Thanks.