Caring for Severely Disabled Children Post-18: Health and Financial Challenges

Andy Riddle provides a comprehensive guide to this process, also delving into the now common problems that Child Trust Fund holders are facing when it comes to accessing their contents.

Can you tell us a little about the Mental Capacity Act 2005 and what it means for the legal ability of a severely disabled 18-year-old to make decisions?

The Mental Capacity Act 2005 (which actually came into force in 2007) helps make sure that people who may lack capacity to make decisions on their own get the support they need to make those decisions. Where they are not able to make their own decision, the Act says a decision must be made that is in their ‘best interests’.

The Act is a law that protects vulnerable adults around decision-making. It says that every adult, whatever their disability, has the right to make their own decisions wherever possible. People should always support a person to make their own decisions if they can. This might mean giving them information in a format that they can understand, or explaining something in a different way. But if a decision is too big or complicated for a person to make, even with appropriate information and support, then people supporting them must make a ‘best interests’ decision for them.

Once a child attains the age of 18 representing adulthood, their parents, family members, friends and other close ones will no longer have any legal authority over that person’s health and welfare or property and financial affairs. If they have been deemed to lack capacity around these two aspects of their lives (and thus unable to instruct when it comes to setting up a lasting power of attorney), then a loved one will need to apply to the Court of Protection to become their deputy/s for either or possibly both aspects of the disabled person’s life.

For parents that have raised their severely disabled child since birth, this may come as a major shock when they visit their local hospital or GP after their child has turned 18, only to be asked if they have a health and welfare lasting power of attorney in place for their child. With the answer invariably being no, the consultant or GP will then inform them that they sadly no longer have any legal authority when it comes to the health and welfare of their child. In this scenario, any healthcare professional will always make any such decision in the best interests of the disabled young adult.

Once a child attains the age of 18 representing adulthood, their parents, family members, friends and other close ones will no longer have any legal authority over that person’s health and welfare or property and financial affairs.

However, what happens if a parent has a different view from that of the healthcare professional? This is when the Court of Protection is likely to be required in respect of a deputyship order for health and welfare.

How is a young person’s decision-making capability assessed in the UK? Under what conditions might they be considered incapable or only partly capable of making decisions in their best interests?

If there is any doubt as to a person’s capacity to make a certain decision or carry out an act, then some form of an official capacity assessment should be undertaken. For the purposes of the Court of Protection, a COP3 assessment of capacity is required for either a property and financial affairs application or a health and welfare application – or both. Such assessments can be conducted by any of the following professions:

• Medical practitioner
• Psychiatrist
• Approved mental health professional
• Social worker
• Psychologist
• Nurse, or
• Occupational therapist

The person in question would need to demonstrate that they are capable of understanding, retaining, using and weighing the relevant information to hand when it comes to making the specific decision in their own best interests.

Under what circumstances might it be appropriate for a youth to be assigned a deputy for decision-making purposes? What are the key aspects to consider with this?

Basically, if the youth in question has been deemed to lack capacity for the specific decision or act required, they will require a deputy to undertake this role for them.

The five main principles of the Mental Capacity Act that always need to be considered and taken into account:

1. Always assume the person is able to make the decision until you have proof they are not.
2. Try everything possible to support the person make the decision themselves.
3. Do not assume the person does not have capacity to make a decision just because they make a decision that you think is unwise or wrong.
4. If you make a decision for someone who cannot make it themselves, the decision must always be in their best interests.
5. Any decisions, treatment or care for someone who lacks capacity must always follow the path that is the least restrictive of their basic rights and freedoms.

What other key considerations should the legal guardians of a severely disabled youth take into account as they approach 18 years of age?

As a parent or carer, supporting a young person who lacks capacity to make financial decisions is challenging at the best of times. These challenges are amplified when a child is transitioning from a minor to an adult. In particular, once a young person enters adulthood, you must decide if it is appropriate for you to continue to make financial decisions on their behalf, and follow the rules in place to allow you to do so. In summary, there are three ways you may legally manage a young person’s financial affairs:

1. Appointeeship. If the young person has been deemed not to have capacity and is in receipt of state benefits only, then an appointee would be suitable. It is important to note that the remit of an appointee is solely to manage one’s state benefits.
2. Deputyship. If the young person has been deemed not to have capacity and has assets, then an application to the Court of Protection will be required for someone to be appointed as deputy to manage those assets and income. You can make an application to the Court of Protection when a young person is under the age of 18 if you believe the young person will lack capacity to make decisions for themselves when they turn 18. This will ensure that you have the proper legal authority to make financial decisions for them when they reach adulthood.
3. Lasting Power of Attorney. If a young adult has capacity to do so, they may wish to make a lasting power of attorney for property and financial affairs to allow someone they trust (called the ‘attorney’) to make financial decisions on their behalf.

When a child or young person transitions to adulthood, new principles also apply to health and welfare decisions – including decisions about care – made on their behalf. Again, this is a particularly challenging time due to the fact that the young adult, on attaining adulthood, will now come under adult social care and not children’s social care. There will also likely be moves to different hospitals, different integrated care boards, different doctors – all as of the result of becoming an adult. These moves should not be underestimated when it comes to the work involved and the affect it may have on the young adult (and their parent/carer).

As a parent or carer, supporting a young person who lacks capacity to make financial decisions is challenging at the best of times.

On the financial side, can you explain the situation that parents of severely disabled youths are facing when it comes to accessing Child Trust Funds (CTFs)?

Under the Labour government, any child born between 2002 and 2011 was eligible to receive at least £250 in a savings pot, which they could access as soon as they turned 18. These were called Child Trust Funds. The policy was designed to enable parents to put away funds which would then be released to their child upon attaining adulthood.

However, in cases involving children who lack the capacity to manage their property and affairs, upon reaching the age of 18, an application must be made to the Court of Protection for the funds to be released. Thus, many parents find themselves having to apply to the Court of Protection in order to be able to access these funds. The bureaucracy, delays, cost (mental capacity assessment fees, court fees and professional fees) and overall legal implications can be a real disincentive for parents.

How significant is this problem, and how many has it impacted?

Children who lack capacity were particularly affected, with an estimated 200,000 having to rely on their families to go through a lengthy, often costly court process to access their savings. An average account contains £1,900. If a family were to use a professional (on top of any mental capacity assessment fees and court fees) to submit the application for them, it is highly likely that this would not be a cost-effective option, and that the aforementioned £1,900 would more or less be utilised.

Has the UK government taken any notable steps towards addressing the issue?

They have, thankfully.

Firstly, parents or guardians of children who lack mental capacity can ask for court fees of £371 to be waived when seeking access to a CTF. However, it must be noted that if the application to the court also involves any other assets or income, then this will fall under the remit of a ‘standard’ deputyship application, and any associated court fees will more than likely be payable. Parents and guardians who apply to the court before their child’s 18th birthday already do not pay fees, unless the child has other substantial assets. The Ministry of Justice and HM Treasury are working closely with trust fund providers to ensure that parents are aware of this and can take necessary steps.

Secondly, the government has made the process of applying to the Court of Protection to access such funds more streamlined, with simpler forms and further guidance provided.

Thirdly, a small payments scheme was proposed by the government in November 2021 to try and help families access CTFs in small amounts. However, this has not been implemented due to the Mental Capacity Act, a groundbreaking piece of legislation which was introduced after CTFs, which protects the person who lacks capacity against fraud and abuse.

Fourthly, the Court of Protection has introduced an online portal to receive applications for the appointment of property and financial affairs deputies with the hope that this will reduce their current timescales of 12-18 months. The Court of Protection has also advised that it has aimed to simplify the application process for those requiring an order of this nature. This may provide some assistance to those families needing to apply to the Court of Protection to access their child’s CTF.

What advice would you give to parents or guardians of a severely disabled 18-year-old on accessing their CTFs through the Court of Protection? Are there any other recourses available?

It really is all about pre-planning prior to that crucial transitional period where a minor transitions to an adult.

There are a great number of professionals working within this field who are very aware of this major issue which parents and guardians are facing. As a result, a number of these professionals have greatly reduced their usual fees for such applications or for such mental capacity assessments. For example, we as a firm have reduced our usual fees by half for such applications, whilst a number of independent mental capacity assessors or social workers that we usually commission have also reduced their fees greatly when it comes to the required mental capacity assessment for the court. These reductions, along with the usual court fee not being required to pay, make a real difference when it comes to cost for parents and are a great example of professionals working together for the greater good.

It is thought that by 2029, all the CTFs will have matured and significant amounts of funds will be locked away in the CTF accounts.

I would also advise to shop around and simply do your research. There are options out there for parents facing these issues, and there are also providers who are sympathetic to your cause.

Lastly a toolkit has been issued to raise awareness of the Mental Capacity Act when it comes to managing the financial affairs of young adults who may not have the required capacity to do this themselves. This is aimed at families, parents and carers of young adults, and can be found on the UK government website.

To conclude, do you have any further comments to make about the legal obstacles faced by severely disabled youths and their guardians in the UK?

Having worked closely with a significant number of families over the past 12 years who have severely disabled children, I am acutely aware of the challenges they face on a daily basis. With their child transitioning from a minor to an adult, this is a further major obstacle that they need to overcome. However, with the right planning and preparation the potential for things to go wrong can be minimised to a degree (albeit never fully erased) when facing such legal obstacles. My top tips for parents looking to navigate these obstacles are as follows.

As mentioned above, it really is all about the pre-planning and preparation during this time of transition. Thus, I would advise parents to get a start on matters when their child is 16 or 17 in looking to ‘get ahead of the curve’ once their child turns 18. Again, the number of parents out there that are simply not aware of the legal implications once their disabled child attains adulthood is very worrying. It is up to organisations like mine and fellow colleagues’ to push and promote this message at every opportunity we get. The government also has a big part to play here, and published toolkits like the one mentioned above are a fantastic start and resource.

There are options out there for parents facing these issues, and there are also providers who are sympathetic to your cause.

Second, use a professional who has the requisite skill set, background and experience when it comes to the Court of Protection, especially when it comes to health and welfare applications, which are notoriously hard to get by the court. Such applications are not cheap, require a lot of hard work (from both the family and the professional) and are time-consuming ,and lastly there is so much riding on them – thus any family really needs to give themselves the best opportunity of getting these applications approved at the first shot.

Finally, do your research in looking to identify charities and support organisations that may specialise in your child’s condition. There are a great number of such organisations out there that offer a wealth of support when it comes to areas around emotional support, legal advice, practical advice, social gatherings, networking, research findings etc.

One such organisation is Rett UK, who we have been working with for some time now. Rett syndrome is a rare neurological disorder affecting mainly females and very few males. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives. Our partnership with Rett UK has brought me personally so much joy, and it really is a pleasure to work with these families who it must be said I admire greatly after seeing the daily challenges they face.

 

Andrew Riddle, Managing Director

Professional Deputies

Central House, 1 Ballards Lane, Finchley, London N3 1LQ, UK

Tel: +44 02030 115586 | +44 07747 800221

E: andy@deputyship.co.uk

 

Andy Riddle is a CIPFA (Chartered Institute of Public Finance & Accountancy) qualified accountant and a PRINCE2 (PRojects In Controlled Environments) practitioner. With more than 20 years’ worth of experience in the field of managing vulnerable clients’ fund and assets, Andy has a passion for the adult social care sector and knows a great deal about the workings of private client practices, all of which he has brought to bear in establishing Professional Deputies in 2011.

Professional Deputies manage the property and financial affairs of adults who are deemed mentally incapable of doing so themselves and have no close ones able to perform the task. The team uses appointeeships, deputyships and lasting powers of attorney to safeguard the assets of these vulnerable members of society, and also aid in drafting applications to the Court of Protection.