Parents are all too familiar with the scenario. Your beloved child turns 18 and suddenly your role changes. Your voice is no longer heard, and your views no longer count in quite the same way. You say goodbye to the legal rights, duties and responsibilities of “parental responsibility” and you become just another person with an opinion in your (adult) child’s life.
And now there is a new barrier in your way – a refusal to share information with you.
The latest hurdle:
Until recently, care providers would routinely share information with parents if the child did not have capacity to consent, based upon a decision that this was in the child’s best interests.
This appears to be changing following the implementation of the General Data Protection Regulation or GDPR. Now some care providers are telling families that they will only share information with a properly authorised representative – their child’s welfare deputy (or attorney).
If you child has capacity to grant a lasting power of attorney, and is happy to take this step, then you may have a solution. However, for many adults with learning disabilities this may not be an option, and parents may face a costly application to the Court of Protection seeking a welfare deputyship appointment. Welfare deputyship orders are currently rationed by the Court – granted only in “complex cases” – although this principle is being tested by a high-profile case currently before the court.
And then another:
There is also the worrying Mental Capacity (Amendment) Bill which is heading for its report state in the Lords on 21 November. A number of important safeguards for adults with impaired decision-making capacity who may find themselves deprived of their liberty are at risk – yet this seems to be going largely unnoticed in mainstream media, despite the best efforts of stakeholders such as Disability Rights UK, Voiceability, Sense, Care England and Carers UK.
One exception was the short piece on the Today programme on 12 October – to be found on the link below. The issue is brought to life by Mr E, the determined carer of HL, of the infamous “Bournewood gap”. I also had a brief opportunity to comment in my role as Chair of the Law Society Mental Health and Disability Committee.
There is still time to make a noise!
There is still time for this important issue to find its voice in the press and social media, to catch the attention of ministers and parliamentarians. We need to ensure this Bill is amended to become fit for purpose – a visionary and empowering piece of legislation that uphold the rights as an equal citizen of any person with impaired capacity to make his or her own decisions.