Making decisions for young adults with learning difficulties – who knows best?

It's a Court of Protection decision that has been long awaited by parents of children with severe learning difficulties who want to be allowed to continue to make health and welfare decisions on their behalf after they reach the age of 18.

The emotive test case was brought by the families of three young people to challenge the law, and seek clarification, on how courts apply the rules contained in the Mental Capacity Act.

The judgement confirms that it remains the case that Health and Welfare Deputyships (also known as Personal Welfare Deputyships (PWDs)) cannot be used to extend parental responsibility beyond the age of 18 as a matter of course and that careful consideration and groundwork is needed before making such an application.

Although the families who brought the case have given the judgement a cautious welcome, they say there is still a lot of work to be done and will proceed with their applications, making it clear to the court why they consider it to be in their family member's best interests that they are appointed as a welfare deputy

Background

One of the parents involved in bringing the case, Rosa Monckton, says she has lost the sole right to make decisions about her daughter's care. Domenica, who was Princess Diana's godchild, has Downs Syndrome and is now 24.

Her legal team argued that currently to be awarded a health and welfare deputyship when a child reaches 18, it is necessary to convince the court that the case is one of the most difficult of its type with a series of linked medical or welfare decisions to be made.

'Safeguarding vulnerable children into adulthood'

Rosa Monckton believes this is wrong: "Like thousands of families across the UK, our children, now young adults, have learning disabilities and lack the mental capacity to make important life decisions for themselves," she wrote on the group's crowdfunding webpage before the judgement.

"We love our children and want to continue to take care of them and make decisions about their welfare, where they lack the capacity to make the decisions themselves, but as the law currently stands, we can't."

She added: "Since March 2018 we have been fighting to change the law for all parents in our position, who need to continue to safeguard their vulnerable children into adulthood. The status we must achieve, through the Court of Protection, is legally defined as deputyship, which is currently only granted in the most difficult of cases."

What does the judgement say?

This week (June 25), Mr Justice Hayden, Vice President of the Court of Protection, reviewed the law on the appointment of Health and Welfare Deputies, also known as Personal Welfare Deputies (PWDs), and the submissions of the Official Solicitor and the legal team for the families.

Whilst he showed understanding and sympathy for families who endure the stress and anxiety of the transition from child to adult services, he said: "The remedy for this lies in promoting good professional practice. It is not achieved by avoidably eroding the autonomy of the young incapacitous adult."

He concluded that the Mental Capacity Act (MCA) was not in fact uncertain or ambiguous.

Under the MCA it is necessary for all those involved in the young person's care to work together to reach best interests decisions where the young person is not able to make that decision. If there is conflict, the Court can be asked to make a one off order on that issue.

Reaction

After the judgement, Rosa Monckton added: "Domenica continues to defy all those who said she would not walk, talk or get a job. We cannot be any prouder of her and the determination she shows. However, Domenica, like many other young people with a disability, still requires direction and guidance to help her make the most of life.

"While support agencies have a role to play there is nobody better placed than parents to help make informed decisions in her best interests where she is unable to do so. However, I hear from many parents who say that they are excluded from this process.

"There is still a lot of work to be done but today's ruling is welcome. We hope this judgment will ensure parents, who of course will in most cases have an intimate knowledge of their children and what is in their best interests, are routinely involved in shaping the future of their children."

The details

In his judgment, Mr Justice Hayden set out the principles that will apply when the Court is to decide whether a welfare deputyship appointment is appropriate including:

• Part 1 of the Mental Capacity Act 2005 is the starting point and sets out a hierarchy of decision making. The "twin obligations" of protection and promotion of personal autonomy are fundamental to this;
• At age 18, a person becomes an adult in the eyes of the law. Even though the young person may lack capacity to make important decisions, their right to autonomy must be respected;
• The most likely conclusion in most cases on application of the Mental Capacity Act principles and relevant factors will be that it is not in the young person's best interests for the Court to appoint a PWD;
• The Court will need to balance the individual's rights to liberty and security / privacy and family life under the European Convention on Human Rights;
• The only presumption in the MCA is that 'a person must be assumed to have capacity unless it is established that he lacks capacity';
• The wishes and feelings of the young person concerned and other factors must be considered but are not conclusive and the weight to be attached to them will vary from case to case in deciding what is in their best interests;
• The Code of Practice says that personal welfare decisions will only be required in the most difficult cases where important and necessary actions cannot be carried out without the court's authority, or there is no other way of settling the matter in the best interests of the person who lacks capacity to make particular welfare decisions.

Time for reflection

At the end of his judgment, Judge Hayden said that the individuals who brought the case should now reflect and consider how or whether to continue with their applications for welfare deputyship. It will be interesting to see whether their applications proceed and the outcome.

Although there may now be some amendment to the MCA Code of Practice it remains the case that it is not always necessary or advisable for parents or family members to resort to an application for health and welfare deputyship to be fully involved.

It may be preferable in the first instance to seek legal advice on your options in helping to "promote good professional practice" if as a parent of a young adult you are hitting a brick wall.

If you are in conflict with care providers, or the authority responsible for providing care, a less restrictive option may be to ask the Court of Protection for a one off order on that particular issue. It is particularly important to take specialist advice on this given that there could be significant costs implications of launching into Court of Protection proceedings.

For help and guidance about this area of the law, please contact Wards Solicitors' specialist Court of Protection team.