Adult children with intellectual disability
Sir, – Those of us with adult children with an intellectual disability who have been campaigning for years for better services will not be surprised by your article “Child assessment crisis: ‘We’ve heard nothing for years’” (News, April 13th).
The crisis facing us and thousands of parents who provide full-time care for their adult daughters and sons with little or no support is a national scandal. Adding to the problem, communicating with families has become more complex owing to the General Data Protection Regulation (GDPR) and the non-commencement of the Assisted Decision-Making (Capacity) Act 2015.
Pre-Covid, there was little prospect of adequate investment in residential services, despite numerous reports identifying the crisis in funding. However, in the post-Covid world it is difficult to contemplate our future. In the past it was generally accepted that in a crisis a residential place would be found when parents were no longer able to provide the necessary care. The current situation is now so bad that even the death of a parent is not considered a crisis. “Can your other sons or daughters not take her?” is often the only option offered by service providers when parents approach end of life.
The neglect of the young is reprehensible but the cynicism and hopelessness experienced by parents of adult children with intellectual disability are an outrage. The fact is that the services for people with intellectual disability have never been adequately funded, planned or organised. As long as that remain so, the parents of vulnerable children and adults with intellectual disability will be forced to live a life of constant struggle and worry. – Yours, etc,