Advocacy means enabling your voice to be heard, speaking for you when you can’t and supporting you when you can. Advocacy is about supporting, enabling, and empowering you to express your views and concerns and access information and services where needed. This page gives information on advocacy, supported decision making and also the process of considering mental capacity for young people to be able to make their own decisions under the Mental Capacity Act.
What is Supported Decision Making?
A young person with a disability and/or special educational needs may have questions about how they can be prepared and supported to make decisions about their future. Under Part 3 of the Children and Families Act 2014, the right to make requests and decisions applies directly to disabled young people and those with special educational needs over compulsory school age (the end of the academic year in which they turn 16) rather than to their parents.
Parents, or other family members, can continue to support young people in making decisions, or act on their behalf, provided that the young person is happy for them to do so, and it is likely that parents will remain closely involved in the great majority of cases.
How can I support a young person to 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:
- Will the person regain capacity?
- Involve the person.
- Consult all relevant people.
- Consider all the information.
- Do not make any assumptions.
- Consider past, present and future wishes.
- Always pick the very least restrictive option.
Involving 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 profound and multiple disabilities 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.
In Nottinghamshire the organisation Powher provide independent mental capacity advocacy services.
How can I find out further information?
The Preparing for Adulthood (PfA) orgnisation have produced a factsheet on this subject to ensure young people can be supported through decision making to create positive outcomes as they prepare for adulthood. Read the Preparing for Adulthood Factsheet or by clicking on the icon below:
What is mental capacity?
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).
The 5 main principles of the Mental Capacity Act:
- Always assume the person is able to make the decision until you have proof they are not.
- Try everything possible to support the person make the decision themselves.
- 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.
- If you make a decision for someone who cannot make it themselves, the decision must always be in their best interests.
- 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.
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.
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’.
You can find out more information on the Mental Capacity Act by reading the Preparing for Adulthood Factsheet or by clicking on the icon below:
Video for Parents/Carers
What is Pohwer?
Pohwer are a charity that provides information, advocacy and advice services across England, offering direct and local support via Professionals and Volunteers. Their independent, free services reach individuals struggling with particular challenges in their lives.
Advocacy means enabling your voice to be heard, speaking for you when you can’t and supporting you when you can. Advocacy is about supporting, enabling, and empowering you to express your views and concerns and access information and services where needed.
What services do Pohwer offer?
In Nottinghamshire Pohwer provide the following services:
- Independent Mental Capacity Advocacy (IMCA) including Relevant Person's Paid Representative Services (RPPR)
- Independent Mental Health Advocacy (IMHA)
- NHS Complaints Advocacy
- Care Act Advocacy
- Independent Advocacy for people affected by the Transforming Care agenda
- Secure Services Advocacy
- Volunteer, peer and citizen advocacy
How do I get support from an advocate?
To make a referral to the advocacy services in Nottinghamshire, you can download the forms below:
- NHS Complaints Advocacy referral form
- Independent Mental Capacity Advocacy (IMCA) referral form
- Independent Mental Health Advocacy (IMHA) referral form
- Care Act Advocacy referral form Nottingham & Nottinghamshire
If you are not sure whether you can get an advocate, or for more information, advice and support in your area, you can contact Pohwer on 0300 456 2370 or email email@example.com.
For further information on the services you can access in Nottinghamshire please click on the icons below:
Who are Ask Us Nottinghamshire?
As a result of the Children and Families Act 2014, every Local Authority has to provide a free, confidential Information, Advice and Support Service, to give impartial advice, information and support across education, health and social care issues to parents and carers of children and young people with special educational needs and disabilities (SEND) living in the area. Children and young people with SEND can also use the service.
Support for parents/carers:
This could include:
- Find a suitable school for your child
- Understand the different ways the school will support your child
- Build and maintain a good working relationship with school staff
- Be fully involved in decisions made about your child’s education
- Resolve problematic situations
- Make a complaint to the school governors when a difficult situation is unable to be resolved
- Understand and set in motion statutory processes where your child has very high-level needs
- Ensure that you are informed about and involved in those processes
- Access independent appeals where other means of resolving disagreement have been exhausted
- Resolve issues around school exclusion
…and with other education-related issues.
The depth of support Ask Us offer depends on your needs. It could be a single phone call to the helpline, where they listen and talk through your current difficulties with you, or it might be that you need a series of in-depth meetings to help you to fill out paperwork or support you through a complex issue. Some parents contact them just occasionally, to ask about something that has arisen in school, while others remain in close contact over a longer period of time, perhaps having individual support from a caseworker for up to a year.
Support for Young People:
Ask Us can offer young people support around education, health and social care issues, which includes free informaton, advice and support.
They can offer:
- Telephone advice
- Face to face support at drop in sessions
- Support at school meetings to discuss your specific needs
- Support with Education, Health and Social Care Needs Assessment (EHC Plan applications)
- Signposting to specialist services
- Help talking to your parents or teachers about your needs
Telephone: 0800 121 7772
Helpline opening times:
For furthe information please click on the following link: ASK US Nottinnghamshire
What is the Equality Act?
The Equality Act became law in 2010. It covers everyone in Britain and protects people from discrimination, harassment and victimisation.
How does the Equality Act protect people with a disability?
If you have a physical or mental impairment that has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities, you can use the Equality Act to protect you against discrimination in education, work and services provided for you. It can require employers, colleges, venues and service providers to make reasonable adjustments, provide support and make things accessible.
What the Act can do for you?
Under the Equality Act, service providers, employers and colleges have to make reasonable adjustments to help you. These can include:
- providing flexible working hours
- providing special equipment or extra assistance to help you in college or work
- providing information in an accessible format such as Braille, Large Print, Easy Read or by using coloured paper
- making a website accessible
- providing ramps for wheelchair access
- providing designated car parking spaces
- providing adapted toilets
- providing lifts to access offices or venues which are not on the ground floor
- making changes to “physical features” – for example to accommodate wheelchairs or a guide/assistance dog
Easy Read Guide
Click on the icon below to open an easy read version about the Equality Act:
Equality Act Resources
Disability Rights UK's Right to Participate website has videos, animations, information and resources to help you find out more about the Equality Act and to fight discrimination. It includes a selection of template letters, which you can use to complain if you think you have been treated wrongly.
Where can I get can further advice and support?
You can contact the Equality Advisory Support Service (EASS)
The EASS Helpline can advise and assist you if you feel you have been discriminated under the Equality Act. It can also advise you about reasonable adjustments.
Phone: 0808 800 0082
Textphone: 0808 800 0084
There is a webcam portal for BSL users.
You can also use an online contact form
Disability Rights UK have information on understanding the equality act: information for disabled students and they also offer a disabled students helpline:
Telephone: 0330 995 0414
Opening hours: 11am-1pm on Tuesdays and Thursdays.
What are human rights?
Human rights belong to everyone, and they provide a very important means of protection for disabled people. Human rights place authorities in the UK; including the Government, hospitals and social services, under an obligation to treat you with fairness, equality, dignity and respect.
What is the Human Rights Act?
The Human Rights Act 1998 sets out the fundamental rights and freedoms that everyone in the UK is entitled to. It incorporates the rights set out in the European Convention on Human Rights (ECHR) into domestic British law.
The European Convention sets out a number of fundamental human rights including the right to life, the right to liberty and the right to free expression. Each right is referred to as a separate ‘Article’ – for example Article 5 refers to the right to liberty.
The UK signed up to the European Convention in 1951. This means that since that time the UK is breaking international law if it does not respect the rights in the European Convention.
Why is the Human Rights Act important for disabled People?
Human rights are not just about the law. The Human Rights Act influences the way public services are delivered to disabled people. The Human Rights Act says that providers of public services, such as staff at residential homes, educational bodies or hospitals, or carers in your own home, must make sure that they do not breach your human rights.
Human Rights Act Guides
Please click on the icons below to open up guides on the Human Rights Act for people with disabilities:
Further information, advice and support
If you think you might have been treated unfairly and want further advice, you can contact the Equality Advisory and Support Service.
Phone: 0808 800 0082
Textphone: 0808 800 0084
You can email using the contact form on the EASS website.
Also available through the website are BSL interpretation, web chat services and a contact us form.
9am to 7pm Monday to Friday
10am to 2pm Saturday
closed on Sundays and Bank Holidays
Alternatively, you can visit our advice and guidance page