Why parents can make decisions for young people under the SEND reforms

by stevebroach

Continuing the theme of ‘things that are really legally complicated under the SEND reform programme’, it’s high time I wrote about the interesting and in my view controversial provisions governing decision-making for young people aged 16-25

Quick recap on the general rule. The Mental Capacity Act 2005 applies to everyone aged 16 and over – with very limited exceptions in relation to 16- and 17-year-olds (no Lasting Powers of Attorney, no advance decisions to refuse treatment being the two key differences pre-18). So in general, once a young person turns 16 they are presumed to be able to make their own decisions. If this isn’t the case, then the presumption needs to be rebutted in relation to each decision they have to take. The MCA Code of Practice has a good chapter (Chapter 12) on how this works for 16- and 17-year-olds.

This can come as quite a shock to parents of disabled children, who will routinely take decisions on their behalf where the child cannot decide for themselves until their 16th birthday – when there is of course no magical change in the child’s abilities or needs. Sadly, the MCA 2005 is too often misused by public officials to exclude families from decision making once young people fall under its remit – something we want to change in #LBBill.

Perhaps with this problem in mind, the legal scheme under the Children and Families Act 2014 (CFA) modifies the approach to decision-making for young people under this Act. Section 80 of the CFA allows for regulations to be made which allow statutory provisions to be modified where a young person (or indeed a parent) lacks capacity to make relevant decisions. The regulations which do this are in Part 6 of the SEN and Disability Regulations 2014.

Regulation 64 requires that where a young person lacks capacity to make a decision under Part 3 of the CFA (i.e. a decision in relation to their education or a related health or care decision) then the right to make that decision rests with an ‘alternative person’, either alone or jointly with the young person. The phrase ‘alternative person’ is then defined as meaning either a formal representative under the MCA (Deputy or Attorney) or, if none exists, the young person’s parent.

It is extremely rare for disabled young people to have a formal MCA representative, and where they do it will often be their parent. This means that in the vast majority of cases the new scheme will allow parents of disabled young people to continue to take decisions about their education, health and care up to the age of 25.

I have mixed feelings about this. On the one hand, it is plainly positive that public bodies will not be able to simply cut families out of the decision making process for disabled young people. But on the other, I can’t see any principled reason why this approach should apply only to decisions made under the CFA. Not only does this potentially undermine the autonomy of young disabled adults, it also seems to me to be discriminatory – what about health and care decisions for young people which are not made under the CFA, i.e. for young people who do not meet the threshold for an EHC Plan?

Annex 1 of the new SEN Code of Practice gives brief guidance on how mental capacity issues are to be dealt with in the new scheme. The annex makes the position clear; ‘In the case of a young person [who lacks capacity to make a decision] who does not have [an MCA] representative, the decision will be taken by the young person’s parent’. Importantly, the Annex does go on to emphasise that ‘However, it is important that people are helped to make decisions themselves wherever possible’ – a key principle under the MCA.

Thoughts on these important provisions both in principle and practice most welcome below.