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social worker

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GP

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ensuring children with down syndrome reach their full potential

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Mental capacity is the ability of a young person over the age of 16 to make their own decisions. This means being able to:

understand information given to them in relation to a decision

remember the information long enough to make a decision

use or weigh up the information available

communicate their decision in any way which can be recognised

If they are unable to meet these criteria, they are considered to be 'lacking capacity'. This can include young people with learning disabilities, mental health problems or brain injury.

When a young person over the age of 16 has been assessed as lacking mental capacity, there may be many different people and agencies involved in making decisions on their behalf, depending on the complexity of the situation. This includes parents, medical and educational professionals and other agencies.

The Mental Capacity Act 2005 (MCA) provides a clear framework for parents on who should be consulted in the decision-making process and when (for example in life-saving treatment).
When a young person 'has capacity'
In law, young people aged 16 and over are presumed to have capacity. They can consent to, or refuse, treatment in their own right, including hospital admission.

They can refuse access to their medical records and not give consent for clinicians to disclose information to parents.
Under 16s
The MCA does not apply to under 16s. In order to decide whether a child under 16 is able to consent to their own medical treatment, without the need for parental permission or knowledge they are assessed to establish if they are competent to make such decisions. This assessment is referred to as 'Gillick Competence'.
Making sure you and your child receive your rights
For more information on legal support and where you can get help, have a look at our Parents Guide to Legal Support.

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Parents Guide To Support - Mental Capacity Act 2005

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Mental capacity is the ability of a young person over the age of 16 to make their own decisions. This means being able to: understand information given to them in relation to a decision remember the information long enough to make a decision use or weigh up the information available communicate their decision in any way which can be recognised If they are unable to meet these criteria, they are considered to be 'lacking capacity'.

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Making everyday, financial, health and welfare decisions post 16

What the law says in England and Wales
What does the law say?
It is important for families to understand the legal framework around decision making for young people once they turn 16. It can come as a surprise to some parents to discover that they do not have the automatic right to make decisions for their older teenagers and adult children with Down's syndrome. This page gives a brief summary of the Mental Capacity Act and some specific information on financial and health and welfare decisions.

When a person turns 16, under the Mental Capacity Act (2005), the starting point is to assume they have capacity to make decisions for themselves. The law says a person must be given relevant information in an appropriate format and time to understand it before a decision on their capacity is made. This may mean that over a period of time pictures, symbols, diagrams, videos, sound clips, verbal conversation or other formats that the person normally uses to communicate are used to help the person to understand the options open to them. This is known as supported decision making. Depending on the decision to be made, this support may be required under the Mental Capacity Act (2005) to be provided by parents, carers or a professional such as a doctor or social worker.

For a person over 16, to be found to lack capacity to make a particular decision for themselves, the following criteria must have been met:

The person has been given ample opportunity and appropriate support to understand the options they have

The person has an 'impairment of, or disturbance in the functioning of, the mind or brain' (Mental Capacity Act, 2005)

The person is unable to retain and weigh up information and communicate their decision

Only if a person's individual situation meets all three of the above, at the time the decision needs to be made, may a decision be made on their behalf.

The Mental Capacity Act (2005) states ' a person's capacity (or lack of capacity) refers specifically to their capacity to make a particular decision at the time it needs to be made'. This means capacity must be assessed in relation to every decision that needs to be made, at the time it needs to be made. Therefore it is not possible to assess overall capacity and make blanket decisions on a person's behalf based on the fact that at a particular time they were found not to have capacity. For every decision to be made, work must be done, and time given, to support the person to understand the relevant information before it can be determined who the decision maker will be. If the person themself is able to retain and weigh up information and communicate their decision, they are deemed to have the capacity to make the decision for themself. It is important to be aware that under the Mental Capacity Act (2005) a person is entitled to make, what others may deem is an unwise decision, provided they are able to retain and weigh up the information and communicate their decision.

You can find more information about how to support people to make decisions see here.

Small day-to-day decisions

If a person lacks capacity, depending on the decision to be made, the decision maker may be parents, carers, or a professional such as a doctor or social worker. Any decision made on a person's behalf, where it has been established they lack capacity to make the decision for themselves, must be made in the 'best interests' of the person to whom the decision being made relates. It must also impose the least restrictive option in relation to the ' person's rights and freedom of action ' (Mental Capacity Act, 2005). For small day-to-day decisions such as what clothes a person should wear, assuming they lack the capacity to make this decision themselves, the decision may be made by one person alone, such as a parent or carer who is supporting the person at the time. In this circumstance capacity can be assessed informally at the time by the person supporting the individual.

Big or complex decisions - 'best interests' process

For any big or complex decisions where it has been established a person lacks capacity, a formal best interests approach must be taken. A best interests approach must involve anyone who knows the person to whom the decision relates to well. It should therefore involve discussion and consultation with the person's family and/or advocate and any other person's who are involved in the care of the individual and the relevant professional(s) (sometimes a doctor, dentist or a social worker depending on the decision being made).

The people involved in a best interests process should provide information about what they feel would be in the best interests of the person based on what they know of them and/or based on their professional expertise. The wishes of the person to whom the decision being made relates must also be considered, regardless of the fact they lack capacity to make the decision themselves. The views of all concerned should be formally recorded, as this evidence will be scrutinised in the event that there is a dispute over what is in the person's best interests.

In the event a decision needs to be made about a medical procedure, and there is no Health and Welfare Power of Attorney (see section below titled 'Health and welfare decisions where a person has capacity') the decision maker would be the medical practitioner who is expert in the particular medical procedure being considered. Where there is a Health and Welfare Power of Attorney, the person holding this would be the decision maker. Regardless of who is the decision maker, they must take into account all the information gathered to ensure the final decision is in the best interests of the person to whom the decision relates. The decision maker must also ensure the course of action is the least restrictive option in relation to the person's rights and freedoms.

There is more information about the Mental Capacity Act (2005) and best interest decisions in the DSA Mental Capacity Act (2005) and Code of Practice factsheet. It also contains information about the options available in the event there are disagreements about best interest decisions of the person to whom the decision relates.

There is also a Code of Practice that must be followed by everyone which can be viewed here; https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice

Can I make decisions on behalf of someone else?

In certain circumstances it is possible to have formal authority to make decisions on behalf of someone else. Under the law, decision making is split into two categories. These are health and welfare decisions and financial decisions. There are however differences in process depending on whether the person themselves has the capacity to understand what it means to award someone decision making powers regarding their affairs and on whether this is in relation to health and welfare or financial decisions.

There are also particular circumstances under the Children and Families Act (2014) when parents are able to make decisions on behalf of young people (who lack capacity) in education between the ages of 16-25. For more information please see: Decision making in education post 16 - Factsheet 1 in the Education Rights Series - Young People over 16 with SEND

Financial decisions when a person has capacity

In the event a person is over 18 and has the capacity to understand what it means to award someone decision making powers regarding their property and financial affairs they are able to use a Lasting Power of Attorney to give these powers to someone. Under a Property and Financial Affairs Lasting Power of Attorney the donor (person giving powers to someone) is able to stipulate exactly which financial decisions they are happy for the attorney (person receiving power to make financial decisions on their behalf) to make. In order to grant a Lasting Power of Attorney regarding financial affairs a person need not have an in depth knowledge about the legal process. It is enough that they understand they are giving the power to another person to manage their money and what this might entail. You'll find more information about how to apply for a Lasting Power of Attorney here.

Financial decisions when a person lacks capacity

In the event someone lacks the capacity to understand what it means to award someone decision making powers regarding their financial affairs there are two options that may be considered:
Health and welfare decisions when a person has capacity
In the event a person is over 18 and has the capacity to understand what it means to award someone decision making powers regarding their health and welfare, they are able to use a Health and Welfare Lasting Power of Attorney to give these powers to someone. However unlike decisions made under a Property and Financial Affairs Lasting Power of Attorney, under a Health and Welfare Lasting Power of Attorney the attorney (person receiving power to make health and welfare decisions on the person's behalf) is only able to make decisions in the event the person lacks the capacity to make decisions themselves. This means the steps explained above regarding assessment of capacity under the Mental Capacity Act (2005) must still be followed before any decisions about a person's health or welfare can be made by another person even if they hold a Health and Welfare Lasting Power of Attorney. Only in the event the person themselves are deemed to lack the capacity to make a specific decision themselves would a person holding a Health and Welfare Lasting Power of Attorney be able to make the decision on their behalf. In this instance the attorney must act in the best interests of the person to whom the health or welfare decision relates and must ensure the course of action is the least restrictive option in relation to the person's rights and freedoms.

Where a person has the capacity to award a Lasting Power of Attorney to another person, they are able to apply to the office of the public guardian to do this. In order to grant a Lasting Power of Attorney regarding health and welfare a person need not have an in depth knowledge about the legal process. It is enough that they understand they are giving the power to another person to make decisions about their health and welfare in the event they are, in future, unable to make these decisions for themselves. There is a one off cost of making a Lasting Power of Attorney. Go to Gov.uk for more details.

From age 18 an adult may have a needs assessment and a care and support plan undertaken by the local authority. The Care Act (2014, section 9, (5), c and 25 (3), c) says the local authority must involve: ' any person whom the adult asks the authority to involve or, where the adult lacks capacity to ask the authority to do that, any person who appears to the authority to be interested in the adult's welfare'. Therefore when an adult who is being assessed has capacity, local authorities must involve those who the adult asks them to involve. People who are keen to have a particular person or people involved in their assessment, care and support planning, may wish to ask the local authority to consult the person(s) they want involved and can use the quote from the Care Act above to do so. They may also wish to ask the local authority to write to them confirming they have placed a note on their file that identifies the people they wish to have involved with assessment, care and support planning to ensure they are consulted.

Health and welfare decisions when a person lacks capacity

In the event someone lacks the capacity to understand what it means to award someone decision making powers regarding their health and welfare it is unlikely that the Court of Protection will appoint a Deputy to make health and welfare decision's on their behalf. Only in very rare and complex cases will the Court of Protection consider appointing a Deputy to make personal health or welfare decisions. In these cases the powers given to the Deputy will be limited in scope and duration. The Court of Protection prefers that the best interests approach is followed in most cases. In the event the Court of Protection is involved because there is a dispute between the parties involved in a best interests process, the court generally prefers to make an order on that specific issue rather than to appoint a Deputy.

In the event a needs assessment or a care and support plan is being undertaken by the local authority, the Care Act (2014, section 9, (5), c and 25 (3), c) says the local authority must involve: ' any person whom the adult asks the authority to involve or, where the adult lacks capacity to ask the authority to do that, any person who appears to the authority to be interested in the adult's welfare'. Therefore local authorities must involve those who are interested in the welfare of a person who lacks capacity in relation to assessment and care and support planning.
More information
Our helpline (0333 1212 300) is open Monday to Friday 10am - 4pm where one of our Information Officers would be happy to provide further information and answer any questions you may have. You can also contact us via email at info@downs-syndrome.org.uk

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Making everyday, financial, health and welfare decisions post 16 What the law says in England and Wales What does the law say? It is important for families to understand the legal framework around decision making for young people once they turn 16. It can come as a surprise to some parents to...

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Children and Young Adults with Down's syndrome and their families need different levels of support to achieve the things they wish to in daily life. The first step to getting additional day-to-day support is to ask for a Social Care Assessment from the local authority.

Social care is not necessarily a replacement for a Parent or Carer's support, but can complement the support they provide and is there to help the person they support. Some social care provision is to support the Parent/Carer in their role by enabling them to continue in their caring role.
What is social care?
Social care support can take different forms. Depending on the Child or Young Person's needs and family circumstances this could include support with personal care, such as washing, eating or going to the toilet, developing friendships and taking part in leisure activities.

Social care support can be provided as services from a local authority, services from other organisations commissioned by a local authority or as financial payments (direct payments) paid directly to the family so they can buy and manage their own support.

See here for more information about how to request different social care assessments in England and how to get the right level of support.

The name and type of the social care assessment varies according to the age of the person.
Getting support from an Education Health and Care Plan (EHCP)
For Young People under 25 who are in education, it is also possible to ask for a social care assessment as part of the overall assessment process for an Education, Health and Care Plan (EHCP) or when the EHCP is reviewed. For more information on EHCPs, including how social care fits in, see our Education Rights factsheets https://www.downs-syndrome.org.uk/for-families-and-carers/education/sen-and-the-law/education-rights-series/
For Adults 18+
An adult social care assessment is known as a 'Needs Assessment'. It will look at the person's health and care needs and assess whether they are eligible for support from their local authority. See the social care series for more information about Adult Social Care Assessments in England.

For further information and advice about assessments please call the DSA helpline on 0333 1212 300.

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Day-to-Day Support for Children and Young People

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Getting Support for Children and Young People Children and Young Adults with Down's syndrome and their families need different levels of support to achieve the things they wish to in daily life. The first step to getting additional day-to-day support is to ask for a Social Care Assessment from...

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Things you can do to help

Children and young people with Down's syndrome have some level of learning disability. This means they may need help with daily life.

What they need help with is different for each person. And this can change as they get older.

You can try these things to help with their development.

Do

praise them when they learn something new

speak clearly and calmly so they can learn from you

play, sing songs and read books together to help with sounds and words

try showing them how to do something instead of just giving instructions - this can be easier to follow

try ways to help them communicate such as Signalong, Makaton or PECS

try to set routines so they feel more settled - for example, for getting up and at mealtimes

encourage them to be healthy and active - find activities on the Down's Syndrome Association DSActive website

look out for changes in mood or behaviour - they may not be able to tell you something's wrong or they're unwell

take them for regular hearing, eyesight and health checks

Don't

do not talk down to people with Down's syndrome - treat them like anyone their age

do not just talk to parents or carers, talk directly to people with Down's syndrome

do not use outdated and offensive language when talking to people with Down's syndrome - see the Down's Syndrome Association language guide

Medical support

Children with Down's syndrome should have regular check-ups with a children's doctor (paediatrician) or a GP.

This is because there are conditions they may be more likely to have.

It could help for them to see:

a speech and language therapist - for help with speaking

a physiotherapist - for help walking if they have low muscle tone

an optician or hearing specialist - for help with vision and hearing

an occupational therapist - for help with their development

Speak to a GP, health visitor or your local council to find out how your child can get these services.

Support with education

Choosing a school or college

Lots of children with Down's syndrome go to mainstream schools.

There are also special schools and colleges for children and young people who might need more help.

Where your child goes depends on:

the help your child needs

what's available where you live

You can visit schools and colleges in your area and ask the staff how they can meet your child's needs.

Special educational needs support

Children with Down's syndrome will get special educational needs support at their school or college.

Special educational needs support might include things like:

extra support from a teacher or assistant

help taking part in lessons

support with things like eating and getting around school

Find out more about support they can get at school
If your child needs more support

You can apply for an education, health and care plan (EHC plan, or EHCP).

This plan says what education and health needs your child has and what support they should get.

Having an EHC plan can either help:

the school get extra money to support your child

you apply for a place at a school that's better for your child

Find out how to get an EHC plan

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Children and young people with Down's syndrome have some level of learning disability. This means they may need help with daily life. What they need help with is different for each person. And this can change as they get older. You can try these things to help with their development.

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Transition of young people with diabetes from paediatric care to adult care (our position)

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Many young people with diabetes do not get a good experience of transition and so do not have such good management of their diabetes. Regular contact with diabetes services is crucial to achieve good diabetes management, but transition is a time when young people can fail to engage with services.

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"Sometimes I've got the words in my mind, and I'm trying to explain it in the best possible way, but it doesn't always come out."

Top tips for communication

Remember, everybody is unique, so take the time to ask the person you're communicating with what works best for them.

In person: Many people with a learning disability prefer face to face and one to one communication.

In writing: Use bigger text and bullet points, and to keep writing at a minimum. Too much colour can make reading harder for someone as well.

On the phone: Speak slowly and clearly, using easy to understand words.

You may also find these tips useful:

Find a good place to communicate in - somewhere without distraction. If you are talking to a large group be aware that some people may find this difficult.

Ask open questions; questions that don't have a simple yes or no answer.

Check with the person that you understand what they are saying e.g. "the TV isn't working? Is that right?"

If the person wants to take you to show you something, go with them.

Watch the person; they may tell you things by their body language and facial expressions.

Learn from experience - you will need to be more observant and don't feel awkward about asking parents or carers for their help.

Try drawing - even if your drawing isn't great, it might still be helpful.

Take you time, don't rush communication.

Use gestures and facial expressions. If you're asking if someone is happy or unhappy, make your facial expression unhappy to reinforce what you're saying.

Be aware that some people find it easier to use real objects to communicate, but photos and pictures can really help too.

Remember, all communication is meaningful, but you may need to work harder to understand.

Further help

Many people with a learning disability can use or recognise some signs. Signalong and Makaton are both Sign Supported English systems. They are based on British Sign Language (BSL), but are used to support the spoken word.

Visit the Signalong website or the Makaton website to find out more.

Visit the British Deaf Association website to find out more about BSL.

Talking Mats are a communication system that uses symbols and other images.

Widgit produce software symbols to help with communication and accessibility.

Symbol World is a website A website is a page you can go to on the internet like Google or YouTube. run by Widget for symbol users that includes nursery rhymes, stories and a monthly magazine.

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Communicating with people with a learning disability

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"Sometimes I've got the words in my mind, and I'm trying to explain it in the best possible way, but it doesn't always come out." Remember, everybody is unique, so take the time to ask the person you're communicating with what works best for them.

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meeting the needs of people with learning disabilities

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Until a disabled child reaches the age of 18, parents (in most cases) will have parental responsibility for their child and, therefore, can make most decisions for them. However, once a child reaches 18 the legal position on decision making changes. Parents lose parental responsibility and no longer have any legal responsibilities or automatic rights to make decisions about their child.

In England and Wales, the starting point for a disabled individual and/or their parent to consider, with regards to decision making, is to assess each decision separately and establish whether your child is able to make this decision for themselves. This is a key principle of the Mental Capacity Act 2005 and it must be assumed that everyone has the capacity to make a decision for themselves unless it can be shown that they lack the mental capacity to do so.

If it is clear that your child isn't able to make a particular decision, then the decision must be taken on their behalf and the Mental Capacity Act sets out how this must be done. The process will depend on the type of decision to be made.

Health and welfare decisions

Probably the most important type of decisions for your disabled child are those dealing with their health and welfare, for example medical treatment; where to live; what care is given; etc.

The person making the decision may vary depending on the type of decision required. It could be a carer, a health professional, a social worker or a parent. This person must consider a number of factors before the decision is made and the Mental Capacity Act states that any decision must be made in the child's 'best interests'.

It's important to have a good understanding of the Mental Capacity Act and how the decision-making process should work when a decision needs to be made. Any person making a decision for your child should consider whether it is appropriate to consult others, including you as parents, for your views on what is in your child's best interests.

If there is a dispute in the decision-making process, then attempts should be made to resolve these. It might be necessary to obtain a second opinion on a particular matter, or hold a 'best interests' meeting or conference with the relevant parties.

How does the Court of Protection fit in?

The Court of Protection has the power to make decisions on behalf of a person who lacks the mental capacity to make their own decisions or they can appoint a deputy who is given specific powers to make decisions on behalf of that person.

For most decisions that need making, following the Mental Capacity Act will enable decisions to be taken in the best interests of your child. It is generally considered a last resort to apply to the Court.

The type of application made will vary depending on the circumstances at the time. The Court could be asked to make a decision about a particular matter, such as what treatment they should or shouldn't receive. The Court can also be asked to appoint a deputy who will have certain powers to make decisions on your child's behalf for a specific period of time.

In some situations, an emergency application can be made to the Court if a decision is required urgently and there is a risk of harm or loss to an individual.

Financial decisions

It is also important to think about what financial matters your disabled child may need help with. What assets do they have in their name? What income do they receive?

If your child is receiving benefits, then you should check with the Department for Work and Pensions if you are the appointee and, therefore, are the person responsible for managing these.

Any organisations where your child has assets may not allow you to manage those assets once your child is 18. For example, banks will require your child to take control of their account and they usually only accept instructions directly from the account holder.

If your child does not have the mental capacity to manage these assets, then you can apply to the Court of Protection to become their deputy for financial matters.

Any application for a deputyship will be considered by the Court and, if approved, they will issue a Deputy Order appointing the deputy and setting out what the deputy can and can't do. The Deputy Order will then give you the necessary legal authority to manage your child's financial affairs.

Who can help?

If you have any queries or concerns about how to make decisions for your disabled child, you should speak to a qualified professional, who will be able to advise on the best course for you and your family.
Katherine Miller TEP is a Director and Solicitor at Renaissance Legal

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How do I make decisions for my disabled child? - STEP Advising Families

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Until a disabled child reaches the age of 18, parents (in most cases) will have parental responsibility for their child and, therefore, can make most decisions for them. However, once a child reaches 18 the legal position on decision making changes.

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learning disability nurse

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School nurse

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Community nurses

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Dietitian

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diabetes nurse specialist

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Specialist Paediatric endocrine consultant

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Consultant paediatrician

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Down-syndrome - what are the key characteristics and considerations ?

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The 'Mental Capacity Act' is an important law for people with a learning disability.

It 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 Mental Capacity Act says a decision must be made that is in their 'best interests'.

The Mental Capacity Act

The Mental Capacity Act 2005 is a law that protects vulnerable people over the age of 16 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 (for example this might be easy read information for a person with a learning disability) 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.

The 5 main principles of the Mental Capacity Act

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.

It's also important to remember that a person may have capacity for some decisions but not others, or they may not have capacity right now but may regain it in the future with support. This means all capacity decisions should be regularly reviewed to make sure they still reflect the person's ability to make decisions.

Supporting someone to make a decision

Before deciding that someone lacks the capacity to make a decision, all practical and appropriate steps must be taken to help them make the decision themselves.

The Mental Capacity Act Code of Practice includes four main points to help someone make a decision:

1. Provide relevant information

Does the person have all the relevant information they need to make a particular decision?

If they have a choice, have they been given information on all the alternatives?

2. Communicate in an appropriate way

Could information be explained or presented in a way that is easier for the person to understand (for example, by using simple language or visual aids)?

Have different methods of communication been explored if required, including non-verbal communication?

Could anyone else help with communication (for example, a family member, support worker, interpreter, speech and language therapist or advocate)?

3. Make the person feel at ease

Are there particular times of day when the person's understanding is better?

Are there particular locations where they may feel more at ease?

Could the decision be put off to see whether the person can make the decision at a later time when circumstances are right for them?

4. Support the person

Can anyone else help or support the person to make choices or express a view?

Making a best interests decision

After all steps have been taken to support someone to make their own decision, if the person is assessed as lacking capacity to make that particular decision, then a 'best interests' decision must be made.

The person who makes the 'best interests' decision is called the 'decision maker'. Who the decision maker is will depend on the situation and the type of decision.

For most day-to-day decisions the 'decision maker' is likely to be the person who is supporting the person.

If it is a decision about healthcare it will be the relevant health professional.

Whoever is the decision maker, it is important they talk with others involved with the person, and involve the person themselves as much as possible, to get a good understanding and therefore make the best decision they can.

Best interests checklist

The Mental Capacity Act sets out a best interests checklist, which must be followed when making a best interests decision:

1. Will the person regain capacity?

2. Involve the person.

3. Consult all relevant people.

4. Consider all the information.

5. Do not make any assumptions.

6. Consider past, present and future wishes.

7. Always pick the very least restrictive option.

The full checklist is in the Mental Capacity Act Code of Practice PD.

Involve the person you are making a best interests decision for

When a best interests decision is being made, the person must still be involved as much as possible.

Mencap and BILD's Involve Me resources offer some creative ways to ensure people remain at the heart of decision making. There are guides and a video to show how the preferences of people with PMLD can be captured and used to influence decisions about their lives, even if they lack capacity to make the decision themselves.

Independent Mental Capacity Advocate (IMCA)

If a person has no family or friends for the decision-maker to ask about important decisions like serious medical treatment or changes of accommodation, then an Independent Mental Capacity Advocate must represent the person's views.

They are a legal safeguard for people who lack the capacity to make big decisions. Read more on Independent Mental Capacity Advocates.

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The 'Mental Capacity Act' is an important law for people with a learning disability. It helps make sure that people who may lack capacity to make decisions on their own get the support they need to make those decisions.

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What needs to be considered as Errol transitions to adult services?

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What is the role of the school nurse in promoting self-awareness in Errol and his confidence in managing his condition and living independently?

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What are Errol’s rights and those of his parents? (Mental Health capacity).

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How will Errol’s disability and health condition impact on decisions for his future

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What care needs does Errol have and how should these be organised?

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What communication approaches will promote effective working in this context?

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Which agencies and professionals should be involved and why?

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Errol is 16 years old. Errol, who has Downs Syndrome, has recently been newly diagnosed with type 1 diabetes. He became acutely unwell a few days ago and was admitted via the emergency department to a paediatric medical ward in order for his condition to be stabilised. Errol’s blood sugars are now under control and the medical team feel he is medically fit for discharge. Errol’s parents have requested a discharge planning meeting as they are concerned about how they and Errol will manage his condition following discharge. Errol’s diet is poor and his parents report that Errol has been uncompliant with medical treatment in the past.

There is no family history of diabetes, consequently Errol and his parents have limited knowledge of the condition. Errol does not like having his BM checked or his insulin administered; he is also getting increasingly distressed by the fact that he is being ‘denied’ some of his favourite foods.

Errol currently attends a Special needs school. The school and his parents have been working together to try to increase Errol’s independence and plan for his transition from childhood to adulthood.

Please consider how the inter-professional team can work together in order to maximise the ongoing support Errol and his family are likely to require on discharge.