Rights, voice and decision making

Children and young people with special educational needs and disabilities (SEND) have legal rights that are meant to protect their interests. We cover legal rights in education and social care in the sections on those topics. Here we explain more general rights, for example the right not to face discrimination as a disabled person. And we look at rights around decision making and how these change depending on your age.

Human rights

All of us have rights under the Human Rights Act 1998, such as the right to liberty, the right to respect for private and family life and the right not to be subject to inhuman or degrading treatment. The government and people who work for public bodies, such as doctors, social workers and teachers, have a responsibility to respect, protect and fulfil all our human rights. Sometimes our rights can be restricted but only if this is:

  • lawful (there is a law allowing it)
  • legitimate (there is a genuine aim or reason for doing it)
  • proportionate (it’s the least restrictive way to meet that aim)

If your child or young person is being treated in ways that seem to go against their human rights, you may be able to use this to argue for a different approach. For example, placing someone in a residential setting far from their family may be legal and legitimate, but is it proportionate i.e., the option that least restricts their right to respect for family life? Keeping a child in at break times is within a school’s legal powers and might be for a genuine reason, but if they say it will happen every break time for a term, is this disproportionately restrictive of their right to liberty?

The Equality Act and Disability Discrimination

Disability discrimination is when a disabled person is treated worse than a non-disabled person or where a service has not done things differently for a disabled person where they should have done. The law on this is set out in the Equality Act 2010, along with discrimination relating to other ‘protected characteristics’, such as race and sex. Disability discrimination can occur in all aspects of life. Children and young people with SEND may experience other forms of discrimination such as racism or homophobia, but here we are focusing on disability.

The definition of disability under the Equality Act is quite wide so most, though not all, children and young people with SEND will be covered. A person is disabled if they have:

  • a physical or mental impairment, and
  • the impairment has a substantial and long-term negative effect on their ability to carry out day-to-day activities

A ‘physical or mental impairment’ can include sensory impairments, medical conditions, learning disabilities, mental health conditions, autism, speech and language impairments, and more. There is no need to have a formal diagnosis, though this is likely to help as evidence. ‘Long-term’ means a year or more, and ‘substantial’ means more than minor or trivial. Normal day-to-day activities can be physical e.g. walking, washing or mental tasks e.g., processing instructions.

- in education

Disability discrimination law applies to all aspects of pre-school, school and college activity, including how education is provided, admissions, exclusions, clubs and trips. They must not discriminate directly or indirectly by treating a disabled pupil less favourably than other pupils because of their disability or something arising from their disability. This applies unless they can show that it is:

  • carried out for a legitimate reason; and
  • a proportionate way of achieving that legitimate aim

Indirect discrimination is doing something which applies to all pupils but which is more likely to have an adverse effect on disabled pupils, for example a blanket policy which does not consider different needs or behaviour that are due to being disabled.

The Equality Act also makes it a duty to make reasonable adjustments so that a disabled pupil is not put at a substantial disadvantage compared to other pupils. This includes taking reasonable steps to provide aids and equipment.

These duties don’t include physical alterations to buildings, although schools and local authorities do have a duty to plan to make schools more physically accessible over time. They must publish this plan.

State funded early years settings, schools and colleges are also covered by the Public Sector Equality Duty. This is a duty to eliminate discrimination, advance equality of opportunity and foster good relations between people who share a protected characteristic, such as disability, and those who don’t.

How to challenge discrimination

If you feel your child has been discriminated against, you should ask to speak to your child’s class teacher, head of year, tutor, or the special educational needs coordinator (SENCO). Explain how your child or young person is being disadvantaged and how this is related to their disability. Give the school or college the opportunity to put things right.

If you are not satisfied by the response, you may wish to make a formal complaint, following the complaints procedure which should be available on the school or college website.

If the issue was around admissions, this needs to go through the local admissions appeal process.

If these approaches do not resolve things, you may have the option of making a claim for unlawful discrimination through the First Tier Tribunal (SEND) for schools or the County Court for FE colleges. This is the same tribunal as deals with EHCP appeals. The claim must be filed within six months of the most recent incident. You will need to get advice as this is a complex area of law. The following are good places to start:

- in services

The Equality Act says that public services and private businesses must make ‘reasonable adjustments’ so that disabled people can access their services. Adjustments might include things like installing a ramp or providing information in a different format. What is ‘reasonable’ depends on what the disabled person needs, how much it would cost and how many people would benefit. This applies to all sorts of services for example health services, public transport, local authority offices, shops, restaurants, cinemas, leisure centres and online services like websites.

This is in addition to avoiding direct or indirect discrimination, harassment or victimisation.

If you think a business or service has discriminated against your child or young person, or has failed to make reasonable adjustments for them, you should raise this with them and, if necessary, follow their complaints process. If this fails, you can ask for advice from the Equality Advisory Support Service (EASS). They can help you consider whether you may be able to take legal action.

- in employment

As your young person moves towards adulthood they may well hope to move into employment. The Equality Act protects people from discrimination in the workplace. This includes an employer not providing reasonable adjustments that would help them to do a job, withdrawing a job offer when they learn of your condition, firing them due to disability-related absences or allowing workplace bullying because they are disabled.

Get more information here: The law on disability discrimination – Disability discrimination – Acas

How decision-making changes as children get older

Parents are expected to make decisions for their children. Part of having parental responsibility for a child is the responsibility to make decisions about their education, look after their money or property and agree to medical treatment for them. But as they get older some of this decision-making shifts. It is particularly important to understand how the law on this works if your child has SEND and if there may be some question about their capacity to make decisions as an adult.

Children under 16 can give consent to medical treatment, providing they have demonstrated the maturity and understanding needed to make that decision. This is often called Gillick competence. If they cannot consent (too young, don’t understand enough) parents can consent on their behalf. Children under 16 have the right to have their views taken into account in decisions around their SEN, for example as part of an EHCP process, but decision-making sits with the parent.

Young people aged 16 and 17 are presumed to have the capacity to make many decisions for themselves, even though parental responsibility lasts until someone turns 18. This applies to medical care, education and benefits. If they may not have this capacity, this should be considered in line with the Mental Capacity Act (more on this below).

For health care decisions, if a 16 or 17 year old has capacity but refuses treatment, this may be overridden by their parent or a Court in their best interests.

In relation to EHCPs, decision-making sits with the young person but they can say they wish their parents to continue to do this on their behalf, and if they don’t have capacity, decision-making reverts to the parent.

For benefits, you can apply to the DWP to become their appointee to claim benefits on their behalf. The DWP will usually visit to check this is appropriate. You can continue as their appointee beyond 18. The DWP should check at intervals that they are still unable to manage their own benefits. See our section on Changes to benefits at 16.

From 18, young people are adults. Parents no longer have any legal responsibility or right to make decisions for them. Adults are assumed to have capacity to make decisions for themselves.

If it appears that an adult may not be able to make a particular decision, the Mental Capacity Act 2005 sets out how to decide if they have capacity, who is decision maker if they don’t and how decisions should be made in their best interests (see below). The DWP can agree that someone acts as their appointee for benefits purposes. This can be a relative or friend or someone from an organisation.  If your child has more substantial property or money and cannot manage these safely, it is possible to apply to the Court of Protection to be appointed as their Deputy for Property and Affairs. You will need advice on this.

The Mental Capacity Act

The purpose of the Mental Capacity Act 2005 is to protect and empower people who may not be able to make their own decisions and to help others understand how and when they can act on behalf of someone who may not be able to make decisions for themselves. There is a Code of Practice to help apply it.

The Code of Practice starts with the assumption that everyone has capacity unless it is shown otherwise. It sets out how to decide:

  • whether someone has capacity to make a decision
  • if they don’t have capacity, how decisions should be made for them
  • who should be involved in making decisions for them

It covers major decisions including property and financial affairs, healthcare and treatment, where someone lives, as well as everyday decisions like personal care.

Some activities or decisions need more capacity than others, but very few people are unable to make any decisions, even those with severe or profound and multiple learning disabilities and high support needs. And the MCA is clear that just because someone makes a decision that other people might think was unwise, that doesn’t automatically mean they don’t have capacity. Every effort should be made to support an individual so they can have capacity.

If someone doesn’t have the capacity to make a particular decision for themselves, someone else will act as decision maker. Who this is depends on the type of decision, for example a healthcare professional will be the decision maker over a health issue and a social worker over where they live. Decisions made for the person must be in their best interests and should place the least restriction on their basic rights and freedoms. Their wishes should be taken into account and, for significant decisions, others should be involved and consulted, including parents, carers and family members.

What if you disagree with a decision?

If you disagree with a decision and want to dispute it, you will need to argue it was not in your adult child’s best interests. Ask for it to be looked at again.

Your young person may be able to have an advocate, so their views are heard better. For a medical decision, you could suggest getting a second opinion. If you can’t resolve things, you should use the complaints or appeals process for the body that made the decision. In difficult situations where no agreement can be reached or the decision is particularly complex, it may be possible to apply to the Court of Protection to make the decision. It is also possible to apply for a Personal Welfare Deputy Order which makes you the decision maker from then onwards. Applying for a Deputy for Personal Welfare is not straightforward; it is expensive and is often not really necessary. Take legal advice about this.

Read more about the Mental Capacity Act on Mencap’s website.

Supporting young people's voice

Involving children and young people in decisions about their lives needs to start well before they become responsible for decisions for themselves. It will protect and support them later on if they have had the chance to learn and practice making choices and feel able to assert their voice, even if in some cases they may not be seen to have capacity for making every decision when they are adults.

Start early with manageable choices. Find ways to draw out their views and make sure others do too. Discuss bigger decisions you make for them and show you are taking their voice into account. Our Involving Young People fact sheet (pdf 675kb) has lots of tips about how to do this.

As they get older they may be able to advice and support in getting their voice heard from others as well as you. Our SENDIASS advice service has a young people’s worker who can help older children and young people express their views, for example in relation to an Education Health and Care Plan. In some circumstances they may have a right to advocacy as a child or when they turn 18.

Amaze Youth Voice

Amazing Futures provide opportunities for young people to be involved in sharing their experiences and shaping services, within Amaze and elsewhere.

Young people in Amazing Futures sitting around a table.