Preparing for adulthood: Young people with a learning disability and autistic young people

The Local Government Association has commissioned this guide focusing on young people with a learning disability and autistic young people, to try and pull together in one place, relevant legislation and guidance to assist local council staff working in this area including social workers and lawyers.

This followed on from conferences held by Yorkshire and Humber ADASS which identified that a resource of this type would help council staff and in particular social workers or council lawyers specialising in either children’s or adults work understand the law in the area where they are not specialists.

This is meant to be a living document which will be periodically updated so if you have suggestions about how to improve this resource please email us at [email protected].

It’s important to note that not all legislation applies to all ages and that although children are considered adults at age 18, some legislation focused on adults starts at age 16 and some children and young people focused legislation reaches beyond 18, for example the Mental Capacity Act applies to young people from the age of 16.

It is important to note that the law is changing. For example, the independent review of children’s social care has recommended that the legal framework for providing children with a disability with support is reviewed and the Law Commission has been asked to undertake this review. This may well mean that the complex law as it stands could be simplified, but that could take some time.

Finally, two key pieces of legislation are critical to the delivery of care and support to young people with a learning disability to help them prepare for adult life. These are the Human Rights Act and the Equalities Act. It is important to have a working knowledge of these laws as they shape policy development and thinking about individual decision making.

1. Transition or preparation for adulthood, by which this guide means theprocess by which young people who need support or care move between services provided exclusively for children, to services provided for those over the age of 18, can be a time of excitement but also anxiety for young people and those who care for them. People may have had a stable home life and continuity of full-time education and support for many years which they know will change as they become an adult. For young people there may be eager anticipation, but also fear of the changes that will happen over the next few years: becoming more independent; developing relationships with others; continuing their education; and entering work. Parents are sometimes unsure what rights they have in respect of their children when they reach 18. Can they still speak for them? Will they be listened to? Who is responsible for making decisions? Will they be able to live a happy life? Will they get the support they need? For parents of disabled young people, their fears around the growing independence of their children and the possible risks of adult life can cause them to be concerned about the future.

2. The law in this area is complicated, largely because different pieces of legislation often overlap, but also because sometimes things ‘must be’ done, and sometimes they only ‘may have’ to be done. There are also a series of Codes of Practice which must be followed, unless there are exceptional reasons not to do so, by the bodies involved in providing services or support to the young person. These Codes often use the word “should” alongside “must”, although they mean the same. This is not always obvious to the non-lawyer but makes a difference as to how a young adult can complain or seek to take legal action to enforce his or her rights if they are not provided. This guide is written for council staff working in this area who want a point of reference as to where to look next. It includes signposting to further information and resources. It is not meant as an authoritative guide to the law but an introduction to some aspects of it, recognising that legal rights and organisational systems and processes change at varying points between the ages of 16 - 25.

3. This guide provides information about the law in England. The law in Wales, whilst having similar underpinning principles, operates in a different way and with different laws and guidance.

4. The NICE guidelines (set out below) provide a comprehensive analysis of the very many studies and reports which show that ‘Preparation for Adulthood’ can provide significant challenges for those providing and delivering services to children and young people. The reasons for this are numerous but NICE identifies the following as particular concerns:

Lack of community placements (PCH would refer to homes not placements however the NICE guidelines use the term placements) and/or placements for over 18’s for those leaving specialist residential school settings.

(a) Lack of placements for those with mental health needs.

(b) Lack of placement for those with palliative care needs (1) 

(c) Teenagers become “lost” or interrupted in their care from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services.

(d) Although this is changing, some Adult Mental Health Services do not offer sufficient services for people with attention deficit hyperactivity disorder (ADHD) or autism.

(e) Disabled young people face more challenges than young people who are not disabled, because the age and stage of moving from children to adult services can differ from the rest of their age group and can often involve multiple different organisations.

(f) Many of these problems are systemic and cannot be easily solved but need to be recognised when designing, providing or delivering services, and ideally this should be done in collaboration with children, young people and parents or carers.

5. Many of these problems are systemic and cannot be easily solved but need to be recognised when designing, providing or delivering services, and ideally this should be done in collaboration with children, young people and parents or carers. 

6.There are around 700,000 autistic young people and adults in England and Wales (2). There are also around 1.5 million people with a learning disability in the UK (3), as well as many with other disabilities. Many of these young people and adults will access services from various parts of local government during their childhood and may also require support and help as they become adults. This guide aims, in a user-friendly way, to explain how the law “locks” together to provide support and assistance during this time in young people’s lives.

7. In this guide, autism is used as terminology as an alternative to using the terms that someone either has autistic spectrum disorder (the medical term for autism), or autistic spectrum condition. Different autistic young people like to use different ways to explain what autism is, and this should be respected.

8. Autism is a lifelong developmental condition which impacts how people communicate and interact with the world around them. The term “spectrum” means that autistic people have a range of strengths and difficulties, which vary from person to person. Some people with autism may require round the clock care. Others may just need people to be very clear in how they speak to them and be given a little bit longer to do things. There are some common difficulties, however, which are required for a young person to be diagnosed as having autistic spectrum disorder by a medical professional. (4 and 5) 

These include:

• Difficulties with understanding other people’s communication with them whether interpreting what is being said, or the way it is being said. Some autistic young people may have no ability to use words, others may be able to use language to an exceptional level. 
• Having difficulties “reading” other people, understanding the feelings and intentions of other people, and often in expressing their own emotions. 
• Needing to have routines and to know what is going to happen next. 
• In some people, repeating movements. 
• Being particularly sensitive or having an inability to regulate or deal with touch, sound, taste, smell, light, colours, temperature, or pain. Having these difficulties can make autistic young people feel overwhelmed in our busy environment and can cause what is known as “sensory overload”.
• Some autistic people have highly focussed and developed interests, which can make them “experts” in a subject, but it can also mean that they have little interest in other aspects of their life or can neglect other aspects. 
• Anxiety can be a realv difficulty for those with autistic young people, particularly in social situations or when there is a change to their routine. This can have a significant impact on their ability to live their life. This can for example lead to what are sometimes called “meltdowns” or “shutdowns”, which can lead to a loss of physical or verbal control. 
• According to the National Autistic Society, over one third of autistic people have serious mental health issues. (6)

It’s important to note that a diagnosis has to focus on the challenges of the condition as opposed to the positives which are increasingly being recognised.

9. A learning disability covers a wide range of conditions, but all of them will affect the way that a person learns new things throughout their life. A learning disability is not an illness and cannot be cured. It is a condition which starts before adulthood and has a lasting effect. It is often used as a term by professionals to recognise or provide some kind of definition for those who have: 

(a) A reduced ability to understand complex information or learn new skills and/or 

(b) A reduced ability to cope living an independent life or looking after themselves

10. Sometimes this disability is caused by having an additional chromosome (for example, a person with Down’s syndrome) or other genetic condition, or because of problems getting oxygen to the brain during birth - for example cerebral palsy. Conditions such as epilepsy can also lead to young people having a learning disability. There is no “fixed” definition of learning disability and using someone’s IQ is not the only appropriate measure of whether they have such a disability. Learning disabilities are sometimes categorised by those diagnosing conditions as “mild”, “moderate” or “severe” based upon the results of various assessment tests or described (particularly when very young) as having “developmental delay” but this is not always the case. Autistic young people may also have a learning disability but may not.

11. People with a learning disability can have greater health needs than the general population. They are more likely, statistically, to experience mental ill health and their disability can mean that they are prone to chronic health conditions or related physical or sensory impairments. Many people with learning disabilities may not be known to social services.

12. Some people are described as having “profound and multiple learning disabilities”. This is a term used by some people to describe a wide range of young people and young adults who have both a severe learning disability but also other disabilities that significantly affect their ability to communicate and be independent. This can include people who have difficulties with seeing, hearing, speaking, and moving (difficulties with hearing and seeing are often called “sensory impairments”). Those with such difficulties require support in many areas of their life, such as eating, washing, or being provided with personal care. But they should still be able to be supported to make decisions about themselves, the choices in their lives and to do things that they enjoy.

13. Being unable to use verbal speech does not necessarily mean that someone has an intellectual disability. They could use sign language or computerised systems to make their feelings and wishes known.

14. A learning difficulty is different to a learning disability. A “learning difficulty” is described in law as a greater difficulty in learning than someone of the same age. (7) In this area of law, it means someone who may be the subject of identification, assessment or provision under the Children and Families Act, part III i.e. for the provision of special educational provision. Quite often young people do not receive a learning disability diagnosis until into adulthood whereas a learning difficulty diagnosis identified by an educational psychologist is more likely to be identified under the age of 18. A learning difficulty refers to conditions like autism, dyslexia or dyscalculia. Some young people will have both a learning difficulty and a learning disability.

15. In order to “navigate” this complex area, it is important to recognise that the overlapping duties mean that you often have to look in more than one place for an answer.

Legislation About the Delivery of Public Services Key to this Area

(a) Local authorities are obliged to comply with the Equality Act 2010 in their delivery of services to the public and must act compatibly with the Human Rights Act 1998.

Legislation About Children

(b) The Children and Families Act 2014 (CFA 2014) sets out the requirements for assessments, identification of health, education and care needs, and, where required, provision of Education, Health and Care plans (“EHC”) for those in education or training until the age of 25. There is a comprehensive “SEND code of practice: 0 to 25 years” which everyone working in this area must have regard to when making decisions. The government is not intending to change the law but has launched a new SEND plan because of concerns about the way that the law works in this area – see

(c) The Children Act 1989 (CA 1989). There is no single law or policy that encompasses child protection in the UK but this Act provides most of the duties owed by local authorities to those under 18 to provide them with services, support and care. There are a set of comprehensive documents which set out in detail the law and guidance in this area.

(d) The Chronically Sick and Disabled Persons Act 1970 : section 2 of this Act provides for domiciliary care, transport, access to leisure facilities and other services for those who meet its criteria. It is the legal basis for the provision of much domiciliary care to children and young people. Once a service has been identified as needed by a local authority under this provision, it must be provided (and someone can bring a legal claim – known as a judicial review) for a failure to do so.

Legislation About Adults

(e) The Care Act 2014 (CA 2014). This legislation aims to ensure the well-being of people over 18 in need of care and support services. It entitles any person over 18 or carer to request an assessment of their needs. It ensures that people are at the centre of their care and support planning. There is comprehensive guidance set out in the "Care and Support Statutory Guidance".

Legislation About Adults and Children

(f) The National Health Service Act 2006 governs the provision of healthcare for both adults and children delivered via the NHS. This is most widely known in this context for the National Framework for NHS Continuing Healthcare, offering ongoing health and social care if the person has primary health needs and meets the eligibility criteria. For these purposes, the most important guidance may be the " NHS Continuing Healthcare Decision Support Tool" and "Children and young people's continuing care national framework".

(g) The Mental Capacity Act 2005 provides a framework for decision making for those who lack capacity and are over 16. There is a "Mental Capacity Act Code of Practice" which provides detailed guidance. The Deprivation of Liberty Safeguards (DOLS) are an amendment to the MCA (2005) which authorises restraint and restrictions to be placed in Care Homes and Hospitals in the persons best interests who are over 18. The system was to be replaced with the Liberty of Protection Safeguards (LPS) but in April 2023 the Government decided not to move forward with the LPS during this Parliament. Similarly, a new Mental Capacity Act Code of Practice being issued to reflect the new legislation will now come into force at some point later (8)

(h) The Mental Health Act 1983 (again due to be amended but it is not clear when the draft Bill will be put before Parliament – see Draft Mental Health Bill. This Act applies to both children and young people and adults, but is largely used for those over 18.

(i) The Housing Act 1996 provides duties to house people with a learning disability if they are homeless in “ordinary accommodation” (and only require such, rather than the more specialist accommodation available under the CA 2014). There is a Code of Guidance for local authorities as to how they should exercise their responsibilities "Homelessness code of guidance for local authorities".

(j) The Autism Act 2009, the introduction of which was ground-breaking because it was the first disability-specific piece of legislation in England. The Act applies to adults.

16. Underpinning much of the legislation are some general principles which apply irrespective of the service to be provided. These are:

• To listen to the wishes, views and feelings of the young person and put them at the centre of decision making, as reflected in the CA 2014, the CA 1989 and the CFA 2014, and the guidance on continuing care.
• To recognise that young people and their families are, from their lived experience, as reflected in the legislation set out above, experts in their own needs and the services they require.
• To provide an assessment of the young person’s needs and, where required, commission or facilitate access to support. Using planning centred around the young person to secure for them both specialist and mainstream community support.
• To create and encourage opportunities to live ordinary lives as citizens in their local communities: again, as reflected in the CA 2014 and the other legislation set out above.
• To be treated equitably with others, and in a non-discriminatory manner, as required under the EA 2010 and the HRA 1998.
• To integrate services to work collaboratively to see the child or young person holistically. There are several statutory powers in the legislation above which either require or encourage joint working or collaborative services. (9)
• Health, education, social care and housing legislation provide that the different statutory bodies involved in delivering help, advice, care, education, training or support should work together. This involves staff working in different organisations co-operating with each other and co-operation between bodies which deal mainly with those under 18 and those over 18 as well, to ease smooth transition. This is set out in the following places:
  • (a) Under the CA 2014
  • (b) Under the CFA 2014
  • (c) Under the Health Act 2006
  • (d) Under the Housing Act 1996.

17. This section sets out some general legal concepts which apply across more than one public service, or which need to be known by everyone receiving or delivering care. It highlights key aspects of the law to support practitioners prepare for adulthood and promote practice which is compatible with the law.

18. All services provided by the public sector are covered by responsibilities not to discriminate against those with protected characteristics as set out in the Equality Act 2010 (EA 2010). The Equality and Human Rights Commission provides guidance on the duties of public bodies from the perspective both of an individual, but also if you are an organisation. In particular, there is "guidance for service providers" and a Code of Practice for those exercising "Services, Public Functions and Associations: Statutory Code of Practice".

19. A “protected characteristic” includes disability, along with race, sex, age, sexual orientation, religious belief, gender reassignment, marriage, and pregnancy. When deciding what sort of services to operate (if you are a service provider in the public sector) and in delivering those services, you must consider if you may well be (even unintentionally) breaching the EA 2010. Someone is considered to be “disabled” under the EA 2010 if they have:

20. Treating disabled people more favourably than those who are not disabled is not unlawful discrimination. Specialist and specific services can be designed for those with disabilities even if they would not be provided to the general public, or other members of a school or college.

21. The purpose of the EA 2010 legislation for those with disabilities is not, in reality to “’level the playing field’ but to bring the playing field ‘up’ so that those with disabilities have a chance to have access to services and education. That is why it is often necessary to create different services delivered in a particular way to “bring up” the playing field.

22. The EA 2010 provides that certain forms of behaviour will amount to ‘discrimination’. The following are forms of discrimination which are prohibited under the EA 2010: Discrimination arising from a disability; direct discrimination and indirect discrimination; a failure to make reasonable adjustments; harassment and victimisation. The Equality and Human Rights Commission is armed with a range of powers including enforcement powers to help encourage compliance with the legal requirements under the Equality Act. In addition, individuals can seek redress through the courts and tribunals, including the SEND Tribunal, if they consider that a body has acted in breach of their duties.

23. A checklist of things to consider if you are providing services to young people includes:

(a) Will the provision of this service directly discriminate against someone on the basis of their protected characteristic? (Section 13 of the EA 2010). If so, it cannot be provided in the way proposed, as direct discrimination cannot be justified (save in the case of age). Discrimination means treating someone differently because they have the characteristic. An obvious example would be to say that someone cannot come to a college because they are disabled, or to refuse to give someone a job on the basis that they had autism, even though they had all the other qualities and skills to do the work.

(b) Is someone being treated unfavourably because of something “in consequence” of their disability? (Section 15 of the EA 2010). “In consequence of” can be traits which come from or are part of someone’s autistic presentation for example. If someone is treated “less favourably” (which again is being subject to a more than minor or trivial action which is “detrimental” this need not be long lasting e.g. anxiety or stress, then, unless the public body can show that the treatment in question is a “proportionate means of meeting a legitimate aim” then it will be discrimination. This is seen most commonly in the way that services are provided to a person, or in the provision of education. So, for example, deciding that someone cannot access a school because the additional staff needed are not present could potentially be discrimination on the grounds of disability.

(c) Will the provision of this service indirectly discriminate against someone on the basis of a provision, criteria, or practice? (s19 of the EA 2010). This involves having a policy, criterion or practice which puts those with protected characteristics – in this case disability – at a particular disadvantage compared to others (who do not have the disability). For example, providing a service which young people with physical disabilities cannot access because it is on the third floor without a lift – to take a very obvious case, or a policy that everyone has to respond to an appeal by using handwriting (excluding those who can only type or who cannot write at all). If there is such a policy, criterion, or practice then any discrimination can only be justified if it is a “proportionate means of achieving a legitimate aim”. For example, in the case of the service on the third floor, the authority could indicate that this is necessary because of the specialist equipment is only available in that room which is fixed and could not be moved and the number of those affected is small (and has been examined and considered before the service was started). Obvious examples of discrimination for autistic young people would be policies which indirectly exclude those with autism from being able to access a service. Other examples include having an “IQ” requirement to be able to use or access learning disability services whether as a child or an adult.

(d) Think about whether there needs to be reasonable adjustments to the service, both set up in advance or put in place when an individual young person is wanting to use the service? (s20 of the EQA 2010). This is something which applies only to those who are disabled and not other forms of “protected characteristic”. The duty provides:

• That there is a provision, criterion or practice which puts a disabled person at a substantial disadvantage compared to people who are not disabled, to make adjustments that are reasonable to try and “avoid” the disadvantage.
• To take reasonable steps to alter physical features which cause disadvantage (which can involve removing or avoiding it) but this excludes schools. 
• To take reasonable steps by way of providing auxiliary aids or services if someone would be at a disadvantage by not having this feature on offer such as a hearing loop, braille translation, large print, easy to read services. When looking at reasonable adjustments you have to examine how much will they cost, what will this entail, and are these adjustments “reasonable”?
• Disabled people cannot be charged for the costs of making the reasonable adjustments (the NHS has helpful guidance on this topic, and the Equality and Human Rights Commission also publishes guidance (10).

24. The Equality Act makes harassment and victimisation in the context of the receipt of goods and services unlawful. Harassment is unwanted behaviour that the receiver finds offensive and where the behaviour is because of the receivers protected characteristic and if there is any connection with a protected characteristic. Unwanted behaviour can include spoken or written abuse or images, gestures or banter that is offensive to the receiver. The unwanted behaviour must have the purpose or effect of violating the dignity, or creating a degrading, humiliating, hostile, intimidating or offensive environment for the receiver.

25. Victimisation is where someone suffers a detriment, is treated badly because they have done a ‘protected act.’ In relation to goods and services it would be where a complaint of discrimination under the Equality Act was made by the victim or someone helping them make such a complaint or making an allegation that the Equality Act has been breached. The reason for the treatment does not need to be linked to a protected characteristic.

26. All public sector service providers must comply with s149 of the EA 2010 which is the “public sector equality duty”. This is meant to be a tool for service providers to proactively consider how they can design and deliver services in a way which minimises discrimination and harassment, and for public bodies to take action to try and improve equality. In relation to those with disabilities, there is a duty upon every public body to have “due regard” (which means to take account of and consider)  (11) the need to:

• eliminate discrimination, harassment and victimisation.
• advance equality of opportunity between those with disabilities and others
• foster good relations between those with disabilities and those without.

27. The duty to “have due regard” applies both to individual decisions and to the formulation of policy (12). The courts have decided (13) that this means:

(a) The equality duty is integral and important: it cannot be ignored.

(b) The decision maker must personally know and be given information about the equality consequences of the decision to be made.

(c) There should be some form of assessment of risk to identify (a) what negative impact this may have upon those with disabilities (b) any ways in which the risks could be lessened or eliminated before the policy is adopted. The courts have said that this must be “with substance, with rigour and with an open mind”.

(d) You cannot justify the “due regard” duty by thinking about it afterwards. Whilst there is no need to tick a box saying “s149 considered”, the reality is that if this decision is likely to be controversial, it is sensible to make reference to s149 and show that it has been considered. There are usually assessments, often in template form, that can be used for this purpose. The duty is continuing so if something changes, or a new factor comes to light, that should be considered.

(e) Those providing “contracted out/commissioned” public services should have due regard when delivering these services.

28. There are specific duties for bodies listed in the Equality Act (14) to publish information about their compliance with the Equality Act annually and publish equality objectives, at least every four years. Further guidance can be found in the "ECHR Technical Guidance on the Public Sector Equality Duty".

29. The CA 2014 places a duty on all local authorities to consider not just the physical, mental and emotional wellbeing of an individual requiring care or support, but also to build the system around each individual young person - so the focus must be on what the young person needs or wants - not what the system can provide.

30. The CFA 2014 does the same. Section 1(3) of the CA 2014 provides a checklist of eight things which local authorities must have regard to when exercising a CA 2014 function. This includes:

(a) That the individual is best placed to judge their own wellbeing

(b) The importance of the individual’s wishes, feelings, and beliefs

(c) The importance of providing services to stop needs developing.

(d) To take account of all of someone’s circumstances when making decisions - not just relying on assumptions.

(e) To have the young person participating as fully as possible

(f) To ensure that any restriction on someone’s freedom is as minimal as is possible.

Good practice is often best demonstrated through co-production with children, young people and their families.

31. Alongside the needs of the person, the local authority is under a duty under the Care Act to “promote better choice and control” over care and support. The CFA 2014 process does the same. Both pieces of law try to ensure that those aged 18 - 25 will receive support which is based upon the outcomes which the young person considers are important, which are personalised to the young person’s needs, and which involves integration of services.

32. Under s19 of the CFA 2014, the following core principles must underpin all decisions taken by local authorities when making decisions about children and young people. They must have regard to:

• the views, wishes and feelings of the child or young person and their parent;
• the importance of the child, the young person and their parents participating as fully as possible in decision making;
• the importance of the child being provided with information and support necessary to participate in decision making;
• the need to support the child, young person and parents to help them achieve the “best possible” educational outcomes.

It is important that there is facilitation to enable the young person to express their wishes and feelings through art or other mechanisms that are meaningful to the person.

33. he ECHR deals with a wide range of rights, many of which are not necessarily of direct relevance to the provision of public services. Those most likely to be relevant would be:

Article 2: this is about the “right to life”. What this encompasses, is the duty for public bodies, when they know or ought to have known that there was a “real and immediate risk to life” in circumstances where the state has responsibility for the person’s care, to do all that could reasonably have been expected of them to prevent that risk (15). The courts have been exploring over the past fifteen years how far there is a “positive duty” upon public bodies when they suspect that there is such a ”real and immediate risk” and how far public bodies should be held to be responsible if someone dies when “under their care”. For example, in R (Maguire) v HM Senior Coroner for Blackpool and Fylde [2023] UKSC 20 , the court had to examine whether or not an “extended inquest” should be held (called an “article 2 inquest”) because Article 2 was “engaged” in a case where a vulnerable person, who had a DOLS standard authorisation, died in a care home following possible failures by medical professionals. Jackie Maguire was a 52-year-old woman with Down’s syndrome and associated learning disabilities and some physical limitations. There were possible failings of both care home staff, a GP and ambulance staff in not taking her to hospital when she was unwell. She collapsed and died in the care home. The Court of Appeal found that the required “procedural obligations” to hold an “extended inquest” under Article 2 were not met, as simply being in a residential care home was not sufficient to trigger this duty. However, such a duty is engaged if someone has been held compulsorily or voluntarily in specialist psychiatric settings and then dies as a result of suicide shortly after their release (see Rabone v Penine Care NHS Trust [2012] UKSC 2). If someone dies where there is a DOLS authorisation in force, the Chief Coroner has identified that an inquest should be held. If those with vulnerabilities are exposed to targeted abuse/harassment or harm, the authority may owe an operational duty if they fail to take all necessary steps where they know that there is an imminent risk to life (see Osman v UK (1998) 29 EHRR 245). There have also been breaches of the duty when someone is in prison and there has been a failure to protect a vulnerable prisoner from a dangerous cell mate (Edwards v UK [2002] 34 EHRR 19).

Where people with a learning disability and autistic people lose their lives prematurely, the local authority, integrated care provider or other service including schools or other education providers should notify the integrated care board under the Learning from Life and Death Reviews of people with a learning disability and autistic people programme (LeDeR). There is then a review of the key episodes of health and social care, and a look at ways in which their health or social care services could or should be improved, which then feed into good practice guidance. The aim is to improve care and to reduce health inequalities (16).

Article 3: Article 3 requires that the state is to refrain from subjecting people to torture, inhuman or degrading treatment. This does extend, in some circumstances, to put in place a positive obligation on the public body/state to take reasonable measures to ensure that no-one is subject to such treatment. What is “inhuman and degrading” depends upon the nature of the individual - for those with learning or physical disabilities, or for those with vulnerabilities, treatment could be held to be degrading which would not be the case for those without such vulnerabilities (17). “Inhuman and degrading treatment” must be serious. Placing someone with a learning disability or autism into a cell for a prolonged period of time leading to mental or physical harm, or subjecting them to arrest involving significant restraint and manhandling because there was a wholesale failure to take any steps to understand their autism could be held to be a breach of Article 3. For example, see (see ZH v Metropolitan Police [2013] EWCA Civ 59) when an arrest took place after an individual refused to leave a swimming pool.

In another case, the European Court held that where school children harassed an adult with a learning disability, a failure to take any steps may be a breach of Article 3 if the authorities knew that there was a real and immediate risk of ill treatment by way of criminal acts and the authorities failed to take steps which should reasonably have been taken (18).

Most importantly, the courts have consistently held that the social care services and the courts are under an obligation to take reasonable steps to protect both children, but also vulnerable adults from abuse (19). Whilst in the care of the public authority, if someone has suffered abuse there should be an independent investigation and if necessary criminal proceedings. So, for example, failing to bring a prosecution solely because of someone’s mental health problems when they had been abused could be a violation of Article 3 (20).

What there is not under this article is a right to medical treatment of any particular kind, or the provision of certain types of support, even if that would avoid inhuman treatment (21).

Article 5 - prohibiting the power upon a state to detain individuals except where needed for assistance of “those of unsound mind”. Issues around DOLS which engage Article 5 are dealt with above in respect of capacity.

Article 8 - This article provides that there is the right to “respect for one’s private and family life, home and correspondence”. Someone’s private life encompasses what the courts have called their “physical and psychological integrity” i.e., the development of their personality. That includes their right to flourish by the provision of social activities, and not to be isolated (22). The right is, however, what lawyers call “qualified” in nature. That means that even if the thing you are doing is likely to breach someone’s rights under Article 8, if the matter in question is done “in accordance with the law”, meets a “legitimate aim” (which in most cases is the promotion of government policy or laws) and is “necessary and proportionate” to respect the rights of others, or for economic reasons then it will be lawful. What is proportionate is something which has been the subject of much scrutiny by the courts, (23) but in layperson’s terms it means that the “means must meet the ends” and there cannot be an easier way to do something which would not breach Article 8. It is a question often of balancing the rights of one person, against other policy objectives (such as saving money, acting equitably).

1. When devising a care package - the CA 2014 clearly encourages the provision of plans which engage not just personal care but also the development of someone’s recreational and social skills, to “develop their personality”.
2. When thinking about where they should live, and if you are considering restricting contact with their family and the person cannot consent to that decision.
3. When reducing a care package. This does not mean that a care package cannot be reduced (see Macdonald v Kensington and Chelsea [2011] UKSC 54 and McDonald v UK [2014] ECHR 492 at [47)) but there must be consideration on the impact on the person and whether or not it is necessary and proportionate to reduce such.
4. When deciding if someone can see their medical records and the personal information about them (24).
5. When deciding if they have the ability to have sex with other people or form a relationship.
6. When deciding whether or not to close residential care homes or other facilities which would amount to people’s “homes” or which are central to the development of their skills (25).
7. When deciding if they should remain living with their family or move elsewhere.
8. In ensuring that adequate community care and support services are provided which have been assessed as required so that someone does not have to live in “deplorable” conditions (26).
9. To produce adequate help for disabled parents who wish to raise children (27).

Article 9 - right to respect for religious beliefs and freedoms.

Article 10 - right to freedom of expression

Article 12 - right to marry and found a family

Article 14 - the duty against discrimination. This does not exist separately to the other rights. It cannot be used as a “stand alone” right; there must be something which comes in the “ambit” of the rights set out above. So, for example, the reduction of care and support services, if it involves reducing them for people with a learning disability but not to those with physical disabilities could be discriminatory, but in this case the discrimination can only be brought under the ECHR because it would involve the provision of services which would engage Article 8 of the convention. There is a right not to be treated differently on the basis of your ‘sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status’. Other status includes sexual orientation, transgender person, age and disability. Again, such discrimination can be “justified” by the public sector body if it can show that it has an objective and reasonable justification and is “proportionate” (as set out above). There is much case law about benefit cuts, caps and people with disabilities. The current court thinking is that when seeking to argue cuts to welfare benefits (which may well apply analogously to other forms of state community care service provision), the court has to determine if the matter is proportionate but weighing very heavily in the balance the government’s right to seek to cut costs and develop policy for which it has been elected that may lead to diminished services (28).

35. The lives of those with a learning disability with autism or both have been the subject of a number of policy initiatives over the past 20 years. In 2015, the government published a policy document called “Transforming Care for people with learning disabilities - next steps.” Transforming Care was the national initiative to reduce numbers of people in hospital settings and although targets were set nationally, the implementation was at local level although the targets set after Winterbourne View were not met. The programme continues as “Building the Right Support for people with a learning disability and autistic people”.

36. The provision of social care, housing, education and health services is “impairment blind”. Any physical or mental impairment or illness can give rise to the need for services. The emphasis is upon the need and how it impacts upon the person in question, not the diagnostic label given to them. So, excluding a group of people with autism, for example those whose autistic spectrum condition has less of an impact upon their academic attainment, automatically from being in receipt of social care provision would not be lawful.

37. The Autism Act 2009 provides that the Secretary of State for Health must publish an ‘autism strategy’ for meeting the needs of adults in England. The Act was designed to improve services to such individuals. The latest 2021 - 2026 strategy (29) specifically includes policy on improving preparation for adulthood (transition) to adulthood. This says:

Supporting positive transitions into adulthood

To improve transitions into adulthood, we will continue our work to ensure education staff have the skills required to support autistic young people during this time. That is why we are including transitions as a topic within our programme of school and college workforce training and development on SEND. As part of this work, we are ensuring that preparation for adulthood is discussed much earlier in young people’s school careers to ensure that they are given appropriate information, advice and guidance.

Some autistic young people need support to get into employment, and we want to ensure more people can get this. That is why we are strengthening and promoting pathways to employment, such as Supported Internships, traineeships and apprenticeships. To make this happen, we are working to support all local areas to develop Supported Employment Forums bringing together employers, Jobcentres, education providers, Local Authorities, young people and their parents to discuss employment opportunities for young people with SEND in their local areas. These forums will focus local skills provision on local employment needs, publicise opportunities for young people with SEND, including to employers, and create work placement opportunities for autistic young people.

We also want to build on our success in increasing the representation of disabled people, including autistic people, in apprenticeships – ensuring that disabled people not only access apprenticeships, but go on to succeed in their apprenticeship. We will do this by engaging with employers, providers, apprentices and the disability sector to determine what works and how best to disseminate this.”

38. The current autism strategy focusses on the following 6 areas:

• Improving understanding of autism in society - by developing public understanding and encouraging businesses to become more inclusive to autistic people and to consider autism when making policy.
• Improving educational outcomes for those with autism: by improved training and resources for schools: by opening more special schools: and by developing workforce training for the transition to adulthood: and by providing work on joined up support for young people and greater monies for parent/carer forums.
• Improving employment, largely through access schemes already available and making the “jobcentre” network more welcoming to autistic customers.
• Tackling health inequalities: by trying to reduce diagnosis waiting times, and working on greater, earlier identification of autism.
• Reducing health inequalities: largely by seeking to reduce the numbers of those with autism in inpatient mental health settings, and their struggle to access community support before the escalation of their needs. This involves having a “delivery board” in central government for seeking to remove people from inpatient settings, and to change the Mental Health Act, and also providing more money for crisis support.
• Improving support for autistic people within the criminal justice setting.

39. The Autism Act 2009 does not create any specific duties or responsibilities towards individuals. However, section 3 of the Act does require that the guidance issued by the Secretary of State should be “had regard to” - i.e. as discussed above followed unless there is good reason not to do so. If for example, there was a complete failure for an authority to take account of this policy, then it may be possible to identify that this was a breach of their duty to have regard to the policy but given the very broad nature of the policy goals, this may be difficult in practice.

40. The Down’s Syndrome Act (30) became law in May 2022. It makes it the duty of the Secretary of State for Health and Social Care to give guidance to “relevant authorities” on steps they should take to meet the needs of those with Down’s Syndrome. Relevant authorities, which will include all health, social care , housing and education bodies shall have to have regard to this guidance. In a similar way to the Autism Act, the idea is to provide some kind of national impetus to create consistent provision for those with Down’s Syndrome. It is likely that the guidance will be consulted on at some point in 2023 (31).

41. Everyone working in preparation for adulthood (transitional) services of any description needs to understand parental responsibility for those under 16 and mental capacity for those over 16. Capacity is a legal concept defined and determined under the Mental Capacity Act, 2005. Cases can be transferred from the Family Court to the Court of Protection when a young person reaches 16. (32, 33) The Family Court makes decisions about where children and young people should live – in particular when a local authority seeks to take proceedings under Part IV of the CA 1989. The Court of Protection (described in more detail below) makes decisions about those over 16 who lack capacity – both in respect of their financial affairs and their welfare, if there is a dispute between individuals about that decision or in cases involving life altering decisions.

42. For those under the age of 16, those with ‘parental responsibility’ (34) can make decisions on behalf of a child or young person irrespective of their disability if they are what courts have called ’within the zone of parental control’. That in effect means that all decisions which parents in our society in the United Kingdom would reasonably consider would usually be made by a parent about their child’s welfare, health and upbringing: for example, where they should live; who they should see; where they should go to school; what medical treatment they should have. These decisions do, however, have to be in a child’s ’best interests’ which can sometimes be different to that of the parent. The UN Convention on the Rights of the Child provides that for all decisions concerning children, the child’s best interests shall be a primary consideration when making administrative decisions (Article 3): “a court when deciding any question in relation to a child’s upbringing shall consider the child’s welfare as the “paramount consideration” (35). Considerations to be made/ thought about will usually include:

(a) Is the decision one that a parent would be expected to make?

(b) Are there any indications that the parent may not be acting in the child’s best interest?

(c) Is the young person resisting and if so, why?

(d) What is being proposed and what impact will that have upon the life of the young person?

43. Where there is a dispute between parents about what is in a child’s best interests, the courts have power to intervene and make a decision (36). The court, when deciding any question about a child’s upbringing shall consider the child’s welfare to be the “paramount consideration”.

44. If there is concern that a parent is not acting in the best interests of a child, a local authority could seek to intervene if a court case was already ongoing by asking the court to appoint someone known as a “Children’s Guardian” who is an independent social work qualified professional skilled in representing young people who acts on their behalf in proceedings concerning their care and welfare.

45. Some young people will be found to be mature enough to make a decision that affects them even if they are under 16. This is sometimes known as being ’Gillick Competent’ (37) or whether they meet ’Fraser Guidelines’ (38).

46. The considerations for this assessment are if they have:

• sufficient intelligence
• sufficient competence and
• sufficient understanding to fully appreciate the decision, they are making.

47. If you are faced with a situation to decide if someone has “competence”, you may want to think about the following factors:

• How old is the child?
• How emotionally mature are they?
• Do they have a learning disability, a learning difficulty or another disability?
• Do they understand the decision they have to take and what this involves?
• In particular, do they understand the risks, consequences, and any implications of making (or not making) the decision, both for themselves and others?
• Do they or can they weigh up the advantages or disadvantages of this decision?
• Do they understand or can understand steps be taken so that they can understand the advice or information they need to be given to make the decision?
• Can they provide reasons for their decisions and why they have reached them?
• Is this person being undue influenced, exploited, coerced, or pressurised in an inappropriate way to make a particular decision by a third party?

48. It should not be assumed that children and young people under the age of 16 who have a learning disability or autism will lack competence to make decisions in their own right. It is highly likely that they will be competent to make all or some decisions. For example, one could not assume that a young person with a learning disability under the age of 16 could not decide if they wanted to undergo medical treatment. It all depends on the particular situation of the young person and their individual knowledge and understanding. The young person could also be helped by an appropriately qualified practitioner to aid their understanding.

49. The moment that a person becomes 16, the Mental Capacity Act 2005 applies. Under the Act young people are presumed to have the capacity to make their own decisions. When it is considered that a person may lack legal capacity to decide, then the professional/ practitioner has a legal duty to consider the Act and the Mental Capacity Act Code of Practice. This provides detailed advice and guidance, which should be followed by professionals/ practitioners and others when making decisions.

50. When meeting a young person or young adult, the first principle is to presume that a young person has capacity. You must not assume someone lacks capacity based solely on their age, appearance, condition, or behaviour. For example: 

• can this person make the decision to open this bank account? 
• can they understand what a tenancy agreement is?

51. Someone may have capacity to make everyday decisions when communicated with appropriately and their communication is understood, but lacks capacity to make a bigger decision, for example deciding what to wear in contrast to undertaking a tenancy. In many cases, you can find ways to speak or communicate with someone to help them understand. There may also be ways of promoting communication to develop their ability to be able to make choices and express them.

52. An individual’s capacity may fluctuate (in particular if they also have mental health conditions which can compromise their ability to think clearly and understand the consequences of their actions). If someone does have fluctuating capacity, you should consider if you can make the decision when they do have capacity (i.e., when they are having a good day). The CA 2014 sets out expressly that someone’s capacity needs to be assessed before an assessment can be made, and if they do not have capacity, the local authority must make a best interest’s decision about this (s58 (3) of the CA 2014) engaging those with parental responsibility or an independent advocate if no such parent or carer exists.

53. Section 1 of the Mental Capacity Act sets out five key principles that form the basis of the Act:

• people are presumed to have capacity unless it is established that he or she lack capacity;
• someone is not treated as being ‘unable to make a decision’ unless ’all practicable steps’ have been taken without success;
• someone is not to be treated as being ’unable to make a decision’ merely because their decision is ’unwise’;
• any act undertaken on behalf of someone who lacks capacity must be made ’in their best interests’;
• any decisions made where someone lacks capacity must examine if decisions can be made in a way that is ’less restrictive of their rights and freedoms of actions.’

54. Section 2 and 3 of the Mental Capacity Act 2005 set out who lacks capacity. The legal test says the following (s2(1)) of the MCA 2005):

“s2(1) For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain”.

This disturbance can be permanent or temporary, and cannot be made simply because of their age, appearance, or a condition of theirs, or aspect of their behaviour that may leave people to make justified assumptions.

Any decision about capacity is made “on the balance of probabilities. This means that the decision is decided as to whether “it is more likely than not”.

S3 says that someone is “unable to make a decision” if they are unable to

(a) Understand the information relevant to the decision (which includes information about the reasonably? foreseeable consequences of making or not making the decision)

(b) To retain that information

(c) To use or weigh that information as part of the process of making the decision or

(d) To communicate this decision - whether by talking, using sign language or any other means.

Someone is not “unable” to understand the information if they can understand an explanation given to them in a way which is appropriate to their circumstances. For example, using simple language or visual aids.

55. The reason for the lack of capacity is an impairment of, or disturbance in the functioning of the mind or brain (s2(1)). Although as a society we now adopt a “’social’” model of disability, the Act still requires that someone has some form of problem within their brain/mind, whether that is permanent or temporary (s2(2) of the MCA 2005). For example, people may well lack capacity during temporary periods of extreme ill health which make them unable to think coherently. There has to be some link between the inability to decide and the identified impairment or disturbance of the functioning of the mind. 15. This is particularly challenging when considering young people and adults who are neurodiverse and autistic as the perceived ’impairment’ may just be about the way they relate to the world around them. However societal norms about behaviour may label the behaviour as difficult or challenging.

56. What does this mean in practice?

• Capacity is judged on the basis of the specific decision to be made, not a general view that someone with that kind of disability wouldn’t be able to do that (set out at s2(3) of the MCA 2005) (39).
• Young people need to have the information presented to them in a way appropriate to their needs and cannot be deemed to lack capacity unless it has been given to them in the way they can best understand (s3(2) of the MCA 2005). For example, a person may need to use forms of sign, Picture Exchange Communications System, talking mats, social stories, videos or other visual aids to try and assist or provide the relevant information, or in some instances undertake visits to places to physically see something. Where someone has the information presented - i.e. their environment can also matter. In some environments, people will be anxious, over aroused or overwhelmed because of sensory or other issues and so may not be able to make effective decisions.
• Whether they are “’unable’” to decide means that they cannot do one of the following things or in some cases more than one of those things, although only one of the criteria needs to be met:
  • (a) Does the young person understand the information relevant to the decision? That will depend on the decision - and includes the reasonably foreseeable consequences of making the decision or of not making the decision (s3(4) of the MCA 2005). This is not always straightforward.
  • (b) Can the young person retain the information? This is only for long enough to be able to decide, depending on what is needed for the decision. So, for example, when deciding when to marry someone, the young person needs to be able to retain the information that they are married to someone and what that means (40). By contrast, the young person would not need to be able to retain the information about going on a journey longer than that need presents itself.
  • (c) Can the young person use or weight that information as part of the process of making the decisions? For those young people with a learning disability, it is this requirement which can sometimes demonstrate a lack of capacity. For example, a young person with a disability may be able to look at the choices between two places to live but can’t use or weigh the information to make a decision. To give an example, when deciding where to live, you would need to know and understand what your choices were about this, and be able to understand the advantages and disadvantages of for example, living at home with your mum compared to living in a house with other young adults. This would be the basic advantages or those which were most relevant to your life. For example, being able to go and do a job, or being able to visit relatives may well be a relevant factor in some cases about where you live for some people but not others. The young person needs to be able to use and weigh all relevant information in the balance and then use it to decide. There can, and very often needs to be advice and support to help with this process, and this is allowed under the Act, as well as the need to make reasonable adjustments under equalities legislation (41).
  • (d) Can a young person communicate their decision - which need not be verbally - any other means is permissible (42).

57. Do not forget that all those over 16 are deemed to be able to make decisions and agree to their own medical treatment without the involvement of their parents/carers under the Family Law Reform Act 1969 unless they lack capacity to make these decisions. Parents and carers often assume that this only takes place at 18. If they lack capacity to make decisions, then under the age of 18 those with parental responsibility for them may make decisions on their behalf.

58. When you are deciding if you can decide in someone’s best interests, you need to check, in the case of healthcare treatment, if they have made an advance decision. The Mental Capacity Act 2005 sets out (at s24-26) what an “advance decision” is, when someone can lawfully make an “advance decision” and what the impact of making that decision is upon those providing care and treatment to others.

59. An “advance decision” is a decision made by someone over 18 (16- and 17-year-olds cannot under the law make an advance decision under the MCA 2005). They must have capacity to enter into the advance decision when they make it. An advance decision is just that: a decision to be made in the future, and in such circumstances as the person specifies, that a specific form of treatment is to be provided, or continued by a person providing healthcare for him or her if at that point they lack capacity. An advanced decision can also state that a form of treatment should not be given. An advance decision, if valid, and applicable to the treatment (s25(1)) must be respected.

60. If someone does lack capacity, then anyone caring for them, looking after them or involved with their lives should act in their “best interests” when making decisions about their lives. Section 5 (1) - (3) of the Mental Capacity Act 2005 provides for statutory protection for acts which are done by those providing services, care or treatment of someone if they reasonably believe someone lacks capacity and they believe that they are acting in someone’s best interests. Providing that those tests are met, then you can be confident that they will not face civil liability or criminal prosecution for decisions made or care and treatment provided to the individual.

61. There is a “checklist” of things to think about when making decisions about what is in someone’s best interests under s4 of the Mental Capacity Act 2005. This includes:

(a) Considering “all the relevant circumstances” (which can be wide indeed);

(b) Encouraging the young person to participate in decisions as fully as possible. Even if someone does not have capacity, their views cannot be ignored;

(c) Their past and present wishes and feelings;

(d) The beliefs and values that would be likely to influence their decision if they had capacity;

(e) Other factors that someone would be likely to consider;

(f) To consult and take account of, where possible, anyone engaged in caring for the person or “interested in their welfare”.

62. Often, those working with children and young people will know that whilst a child may have capacity to make some ‘day to day’ decisions when they reach 16, they may well not have the capacity to make bigger decisions. If this is the case, parents, carers, and those working with them need to look at:

• Are there any steps which could be taken to maximise the chances of them having capacity or being closer to be able to make their own decisions? (For example, a course of education, training, work with care staff?)
• What do we know about the person really enjoys or dislikes? What matters to them? What evidence is there to support this and what other evidence do we need to find?
• Can we or do we need to use our imaginations to try and have them do something which is the least restrictive of their rights and freedom of action. How can we devise, consider, and do this?

It is important that all those providing education, health, social care and housing services to young people recognise that they may well be (without realizing it) depriving a young person of their liberty. There is nothing wrong with doing this if it is necessary and in someone’s best interests to stop them hurting themselves or other people or putting themselves at risk of harm, but it must be properly sanctioned by a court or via an administrative process, currently known as Deprivation of liberty safeguards (43). As stated in the Core legislation section, this process should change as liberty protection safeguards are brought into force but this is unlikely to be much before 2025.

63. Being deprived of your liberty is something which is decided by looking at whether the considerations set out in Article 5 of the European Convention on Human Rights are met. This is a complicated provision. As set out by the English courts, in order for someone to be ’deprived’ of their liberty (as opposed, for example, to their liberty being restricted) the following factors must be met (44):

(a) Confining someone in a restricted place for a ‘not negligible’ length of time. The “’acid test’ is whether or not someone under continuous supervision and control, an is not free to leave. So somewhere where young people are locked in at night, or locked in during the day, are supervised at all times, even if not under lock and key, and cannot simply leave when they want to.

(b) Someone cannot consent to this confinement. This will either be because of their age, or capacity/competence, or both.

(c) The state is responsible for this confinement. This would include both where children are in the care of the state, but also where the local authority is devising a care plan or is part of devising a care plan that involves this type of restriction, or where health or another public body is involved. For example, through an Education Health or Care (EHC) plan.

Please bear in mind that all applications for authorisation for deprivation MUST take place before the placement begins (or in an emergency within a matter of hours/days). Failure to do so is a breach of Article 5 of the European Convention on Human Rights.

The law as it operates at present provides:

For those under 10

64. There have been debates as to when a child could be deprived of their liberty, as opposed to the usual supervision necessary for all small children. The consensus at present (2023) is that for those under the age of ten, it is unlikely that deprivation of liberty will be relevant (45).

For those aged 10 - 16

65. Those with parental responsibility (but not a local authority who has parental responsibility) can consent to someone being deprived of their liberty where the child is not competent (as set out above). It would be usual in this situation for a psychologist/psychiatrist to be involved (46). There will not need to be any application to any court for deprivation of liberty as Article 5 of the ECHR is not engaged. It assumes in this situation that the person exercising parental responsibility is doing so in someone’s best interests and appropriately. If that is in question, then the court should be involved to decide if a parent is acting in a child’s best interests  (47). Currently policy makers are questioning of whether this should continue to be the case, but this is still the law at present.

66. If a child is aged 10-16 and is cared for by the state, or if parents do not consent to any deprivation and the placement will involve the provision of secure accommodation or an unregulated placement, this would mean that a local authority should apply to the High Court/Family Court for the exercise of its inherent jurisdiction. The procedure to be followed is set out in re: A-F (children) 2018 EWHC 138. There is now a specific DOLS court to which such applications should be made (48).

For those aged 16-17

67. It must be assumed that young people have capacity unless it is established that they do not as set in the MCA 2005.

68. Where a young person is confined, and practitioners are seeking consent from the young person, it is important that they remain objective in their support to avoid any ‘coercion’. This is particularly important where practitioners believe the confinement is in the interests of the young person. A crucial consideration is whether the young person has a choice about what kind of arrangements are to be put in place.

69. If the young person cannot understand, retain, use, and weigh the information about their confinement and communicate their decision to agree to it, then they cannot give consent to it, and will therefore be deprived of their liberty for which it will be necessary to seek an authorisation. This will be so even if the young person appears to be compliant, acquiescent, or even actively to be content with the arrangements. Compliance, therefore, does not constitute consent. 

70. There may be circumstances where people can consent to their confinement, but care must be taken when deciding that consent has or can be given. To give valid consent the person needs to:

• have sufficient information to make the decision, such as the purpose and nature of the arrangements being put in place and any alternatives to it,
• give their consent voluntarily (without any unfair or undue pressure),
• have the ability to make the decision (for people aged 16 and over, this is referred to as ‘capacity’, for under 16s this is referred to as ‘competence’).

71. If the young person can understand, retain, use and weigh the information about their confinement, and communicate a decision to agree to it, but does not give that consent, then no one can seek to override that refusal. The young person must therefore be seen as deprived of their liberty. If someone lacks capacity then there must be authorisation of the deprivation of liberty for those aged 16-17, on the basis that it would not be usual for a 16–17-year-old to be so confined (Re D [2019] UKSC 42). Court authorisation must be sought for such deprivation as they cannot be authorised using the administrative procedure under Schedule A1 of the MCA 2005.

For those over the age of 18

72. For all young people over the age of 18, either the administrative processes of the Deprivation of Liberty Safeguards as set out in Schedule A1 of the MCA 2005 apply, or a court order is required, made by the Court of Protection. This section sets out what such safeguards are, and when practitioners may need to use these processes for those over the age of 18. Please note that the DOLS safeguards as currently in place will be changed (at some point later in 2023 or 2024 to be called Liberty Protection Safeguards and with a more streamlined process for their approval).

73. Deprivation of Liberty Safeguards (DoLS) apply in England and Wales only. DoLS ensures people who cannot consent to their care arrangements in a care home or hospital are protected if those arrangements deprive them of their liberty. The Mental Capacity Act allows restraint and restrictions to be used but only if they are in a person's best interests. Extra safeguards are needed if the restrictions and restraint used will deprive a person of their liberty. These are called the Deprivation of Liberty Safeguards. The Deprivation of Liberty Safeguards can only be used if the person will be deprived of their liberty in a care home or hospital. In other settings the Court of Protection can authorise a deprivation of liberty. Care homes or hospitals must ask a local authority if they can deprive a person of their liberty. This is called requesting a standard authorisation.

74. If someone is living in a registered care home or hospital, then the process set out under Schedule A1 of the Mental Capacity Act 2005 will apply. This can involve granting an “’authorisation’ for that person for up to 12 months, which is subject to review.

75. If someone is living anywhere else, then authorisation needs to be made to the court - under s4A(3) and 16(2)(a) of the MCA 2005. This includes care homes, nursing homes, supported living, people’s own homes, day services, sheltered housing, extra care, shared lives etc. Even if people are living in their own homes, they can be and sometimes are deprived of their liberty. There is a procedure to be followed if there is agreement between all as to the deprivation - set out in Re:X (no 2) [2014] EWCOP 37 and on form COPDOLL11.

76. From some point in the future (not before 2025), government has said that there will be a new system which will abolish the old Deprivation of Liberty Safeguards as set out in the Mental Capacity (Amendment) Act 2019. A draft code of practice has been consulted on (March 2022) (49). Draft Regulations have also been set out. The main changes proposed are:

• There will be one administrative scheme which will authorise deprivations of liberty in all settings - which are to be called “’Liberty Protection Safeguards’ LPS.
• They will apply to everyone over the age of 16
• The relevant test for when someone is deprived of their liberty remains whether someone is “under continuous supervision and control and whether they are free to leave”.
• There will be a “’responsible’ body whose job it is to undertake the relevant assessments to ensure that there is
• lawful authorisation of the deprivation of liberty. Under LPS: 
  • NHS hospitals will be the responsible body for managing the process for their patients
  • ICBs (Integrated Care Boards) will be the responsible body for managing the process for people primarily looked after by them (i.e. under continuing healthcare arrangements out of hospital)
  • Local authorities will be the responsible body for everyone else (people in care homes, supported accommodation, Shared Lives, their own homes and independent hospitals)
• There will need to be three assessments for any LPS: a ‘capacity’ assessment; a ’medical assessment’ and an assessment that the LPS is ‘necessary and proportionate’. A person called an approved mental capacity professional will deal with more complex cases. An independent mental capacity advocate (IMCA) will have an expanded role.
• Families should be consulted before decisions are made. Once the process is in place, it should be less complicated to administer but the same difficult questions will arise as to when someone is being deprived of their liberty and when people do not agree as to the arrangements to be made for someone’s care.

77. An EHCP is the overarching plan for a child/ young person up until the age of 25 if they meet the criteria (set out later in this guide). It should be specific and detailed and identify who is doing what, when and how frequently. The government is proposing to standardise EHC plans but further details as to how and in what way have not yet been indicated (50).

78. This emphasis upon co-operation is known as ‘general’ rather than specific duties (51) which means that it does not in most cases create a specific right an individual can enforce if those duties are breached. In some cases, however, if it could be shown that there was a failure to have a system in place for co-operation, or an individual decision was wholly unreasonable, then it may be possible to argue that there has been such a breach.

79. In particular for those preparing for adulthood, the CA 2014 guidance and the SEND Code of Practice identifies that there should not need to be ‘multiple assessments’ and “giving out the same information repeatedly” (paragraph 16.44 of the CA 20142014: paragraph 9.33 - 9.47 of the SEND Code of Practice”). Both sets of guidance emphasise and provide practical advice on co-ordination of assessments - using the ‘tell us once’ approach or having one person to co-ordinate assessments across different bodies (paragraphs 16.45 - 16.49 of the Care and Statutory Support Guidance).

80. Furthermore, the importance of joined up working is stressed in legislation and guidance (52). Section 25 of the CFA 2014 emphasises the need to ‘ensure the integration of educational provision with health and social care provision where this would promote the wellbeing of children or young people in its area who have a SEN or disability, or it would improve the quality of special educational provision. Local authorities and their health partners must make joint commissioning arrangements for education, health and care provision for children and young people with SEN and disability which should include that EHC needs assessments, securing the education, health, and care provision in the EHC plans and agreeing personal budgets (53). There are specific duties of the local authority to co-operate with its partners and each of its local partners to co-operate with the local authority when carrying out its functions under Part 3 of the CFA 2014 which includes district councils, schools, youth offending teams and health (54).

81. Section 31 of the Children and Families Act 2014 creates a duty to ensure co-operation in an individual case. This includes health and education. The body must comply with the request unless that would be (a) incompatible with their duties and (b) otherwise have an adverse effect on the exercise of the functions (55). Written reasons should be given to the local authority that made the request for co-operation, with written reasons for the decision (s31(3)). These duties do not create new services or money, however.

82. The Care Act 2014 statutory guidance makes it clear that where housing forms part of the solution to meeting a person’s care and support, then the local authority can include this in the support plan even though the housing element of the plan is to be provided under housing legislation. There are general duties on co-operation which can include local social services and housing authorities under s6 and s7 of the CA 2014 (NB: in London and other urban areas housing and social services functions are delivered by the same authority: outside urban areas, housing will often by provided by a district council, whereas social care will be provided by a county council). Section 213(1) of the Housing Act 1996 requires social services to co-operate ‘to the extent that it is reasonable’ where the housing authority needs it help to provide assistance for those homeless under the Housing Act 1996.

83.The concept of “ordinary residence” is used by both health authorities and local authorities in making decisions as to whether they are responsible for the person presenting as potentially requiring services. If someone is “ordinarily resident” then a local authority will be responsible for providing them with social care services or paying for their accommodation, even if that accommodation is found in a different geographic area (56).

84. The provision of care and support services to those over 18 depends upon someone being “ordinarily resident” in that area. The concept is not defined in legislation but has been described as where someone lives, which they have decided to live in voluntarily and for a “settled” purpose as part of “the regular order of their life”. This involves looking at how long someone has lived somewhere, why they have lived there, if they have chosen to live there and if this is continuous. Someone could be ordinarily resident the day that they move from one area to another, however, it could not be ordinary residence if it is intended to be only temporary in nature.

85. Particularly difficult issues can arise about someone’s ordinary residence if they have been living outside of the geographic area where they were born, or where their parents lived – often because of their need for specialist care, or schooling, and they do not have the mental capacity to make decisions for themselves. In R(Cornwall) v Secretary of State and Ors [2015] UKSC 46, the court had to decide where someone was ordinary resident. PH was born and became a looked after child in Wiltshire. When he became looked after, he lived for 14 years with foster carers in South Gloucestershire. He was approaching the age of 18. His parents had moved to Cornwall. He did not have capacity to decide where to live.

86. The Supreme Court found that he was ordinarily resident in Wiltshire. Broadly, this was because a local authority should not be able to avoid continuing responsibility for children and young people by “exporting” individuals to accommodation in other geographic areas.

87. For those who are looked after as children or who lack capacity to make decisions about residence over the age of 18, the principles are therefore:

(a) Where someone is placed in accommodation by local authority A into the area of local authority B under the CA 1989 the child or young person is to be considered to remain ordinarily resident in local authority area A.

(b) Where someone does not have capacity to decide where to live, then you have to look at where someone is in “residence” and “the nature of that residence”, looking at the length of time and quality of the residence. The CA 2014 Care and Support Guidance provides useful pointers (at paragraph 19.32) (57) when trying to ascertain ordinary residence. This would include:

• Where someone is physically present.
• Why they are living there.
• Their connection with the area
• The length of their residence
• Their views, wishes and feelings.

88. There are often disputes about where someone is ordinarily resident. The Department of Health and Social Care has a mechanism to make binding directions to resolve disputes under the CA 2014.

89. When someone becomes 18, they move from being the responsibility of “Children’s Services” within the local authority (58) to “Adults Services”. This document uses these terms, although some authorities have “all age” provision and some integrate their social care provision with health provision. If someone who is under 18 is “likely” to have “care and support” needs when they become 18, then in essence, the law says that they should have an assessment to see if they will require “care and support” from Adult Services when they are over 18. The law which sets out what a local authority should assess and if they should provide care, and if so, what sort of care and support services is set out in the CA 2014 .

90. The CA 2014 is based upon the principle of “wellbeing”. This is not defined in law. Section 1 of the Care Act creates a “general” duty to promote wellbeing and section 1(2) lists nine “areas” where wellbeing should be thought about. These range from personal dignity, through to protection from abuse to participation in work, education and training, to family life, living accommodation and contribution to society. In other words, everything that helps a person have an ordinary life. A local authority must think about these factors every time it does anything to do with someone who may receive services under the Act.

91. The legislation which governs the “transition to adult care and support” is set out at sections 58 - 66 of the CA 2014 sections 58 - 66 of the CA 2014. “Care and support” are not defined in the Act.

92. Those who care for people with a learning disability or autistic people are entitled to a carers assessment of their needs under the CA 2014 (or if they care for someone under 18, under the CA 1989). An assessment is required if someone provides care for someone who has parental responsibility for those under 18 (59).

93. If it “appears to the local authority” (i.e., the decision whether an assessment is needed is not that of the young person, or their family, but a decision of the local authority) that:

1. It is “likely” to have needs for care and support once they become 18 - this is defined in the statutory guidance (paragraph 16.9) as “any likely appearance of any need for care and support as an adult” and not just needs which are eligible: anyone in receipt of services as a child is likely to have needs. It should therefore be routine that all children receiving support from children’s services are likely to receive a transition assessment. The practical implications of this can be significant. The fact that a disabled child may not require social care support services as an adult does not mean that a transitional assessment should not be provided. Paragraph 16.4 of the Care and Support Guidance identifies that part of the assessment process is to provide information so that they can prepare for the future - so even if no services will be provided, solutions can be presented which may help planning in this area.
2. It will be of “significant benefit” to be assessed. Significant benefit is not defined in the legislation, but the Care and Support Guidance identifies that an assessment should happen “at the point when their needs for care and support as an adult can be predicted reasonably confidently but will also depend on a range of factors”. “Significant benefit” is also not related to the level of someone’s needs, but rather the timing of the transition assessment (paragraph 16.10 of the care and support guidance). The Education Health and Care planning process (see below) mandates formal transition planning from the age of 14 for education (SEND Code of Practice, paragraph 8.9) and so for many families they may well consider that this is the age when planning to adulthood should start and the Care and Support Guidance identifies that it is the EHC part of the process (i.e. education) should lead on the transitional assessments (paragraph 16.11 of the Care and Support Guidance and the SEN Code of Practice at paragraphs 8.59 - 8.64). The care and support guidance sets out a variety of factors including (a) future educational path (b) future employment (c) future accommodation (d) whether they are a care leaver and the time it may take both to assess but also to plan and put in place the care and support.

94. If no assessment is to take place when first requested, the authority should be able to identify and agree when such an assessment would be suitable to take place, rather than to create uncertainty (Paragraph 16.15 of the Care and Support Guidance).

95. Accompanying the law is a guide to the CA 2014 called ‘Care and Support Guidance”. All those working in local authorities (both lawyers and non-lawyers) and the courts have to “have regard” to this guidance. This means that they must follow the guidance unless there are good reasons not to do so. (60) Chapter 16 provides a great deal of information about the transition process and how local authorities should act.

96. A “transition assessment” is not necessarily the only assessment which can take place - there can be combining of other assessments at the same time. A transition assessment is not just for the young person, but also for those who may be young or adult carers. The assessment should always include (paragraph 16.24 of the Care and Support Guidance):

(a) for care and support and how these impact upon their wellbeing

(b) Whether the child (or those caring for the child) will have needs for care and support after the child becomes 18:

(c) If so, what those needs will be, and which are likely to be eligible needs.

(d) The outcomes the young person (or their carer) wishes to achieve in day-to-day life and how the care and support can contribute to achieving them.

97. If someone is a carer (whether an adult or another young person/child), the “transition assessment” must also consider if the carer is:

• Able to care now and after the child in question turns 18
• Is willing to care now and will continue to after 18. There is no legal obligation to look after a young person after they turn 18. There is no legal requirement on parents to continue to provide care, although the majority of them wish to do so. An ongoing caring role after this age is a choice for the adult and can be revoked.
• Works or wishes to do so.
• Is or wishes to participate in training, education, or recreation (care and support guidance paragraph 16.25- i.e. the carer).

98. As with all assessments carried out under the CA 2014, there should be:

• (a) Details for the timescales within which an assessment will be made.
• (b) Identify short, medium, and long term needs and
• (c) Be clear about how progress is to be monitored, audited, and reviewed.

99. As one case says (61) you need to know in any care plan:

What is being provided

• From whom
• For how often
• At what place
• And how frequently it is being reviewed.

100. Adult carers of children with a disability are also entitled to an assessment - known as a “child carer’s assessment” (although in reality the vast majority of these parents would qualify for a transitional assessment in any event) under section 60 - 62 of the CA 2014. These provisions are again complicated but boil down to:

• (a) A requirement that a local authority assess the adult carers of a disabled child during the transition process
• (b) And identify if the carer is likely to have needs for support after the child becomes 18.
• (c) Again, it should be carried out when of “significant benefit” to the carer (which may of course be at a different time to that of the young person/child).
• (d) In practice the parents needs are likely to be considered as part of a holistic child and family assessment, however parents also do have the right under the Children and Families Acts 2014 to request a standalone Parent Carers Assessment.

101. Particular thought needs to be given as to the young person’s likelihood of spending more time in a home setting if they leave school/other education as their need for support from carers may well increase in that situation (see 16.20 of the Care and Support Guidance).

102. “Young carers” are “those under 18 who provide or intend to provide care for an adult but are not paid to provide the care and are not a formal “volunteer” (defined under section 17ZA (3) of the CA 1989 and s63 and s64 of the CA 2014). Again, a young carers assessment should be made if: 

• (a) They are likely to have needs for support after the age of 18
• (b) It will be of “significant’ benefit” to them for it to be carried out at this time.

103. If a local authority wants to refuse an assessment, it must give reasons for this in writing along with information about “what can be done to prevent or delay the development by the carer/young person of needs in the future” (s60(6) of the CA Act 2014).

104. Some children with a learning disability, autism or both may have become “looked after”. A looked after child is someone who is provided with accommodation and other services by the local authority. This will either be because:

(a) The courts have decided that they need to live under the supervision and control of the local authority under a care or supervision order (under s31 of the CA 1989. It should be noted that care orders cannot be made for those over the age of 17 (but if made under the age of 17, it carries on until someone’s 18th birthday (s91(12) of the CA 1989).

(b) (Possibly more commonly) they are accommodated by the local authority under s20 of the CA 1989. Section 20 provides that where “a person who has been caring” for a child and is “prevented.from providing him with suitable accommodation or care” - whether this is because the child is “abandoned”, “Lost” or because the parent cannot (on a temporary or permanent) basis provide accommodation, then the child becomes “accommodated” under section 20 of the CA 1989. The local authority is obliged to provide accommodation for those under the age of 16 in this position and is under a discretion to do so for those aged 16-18. A failure to provide such accommodation when requested could give rise to a claim in judicial review (62). This duty is, however, subject to parental consent (s20(6) or (7)) and so is often seen or spoken of as “voluntary care” as the parent does not share parental responsibility with the local authority. For many parents of children with complex disabilities, this is a realistic way in which the needs of their child can be met. There is nothing in this section which seeks to denigrate or stigmatise parents who make that decision.

105. Whether a child is accommodated on a compulsory or voluntary basis for a continuous basis of longer than 24 hours (s22(2) of the CA 1989) then a child becomes “looked after”. This means that a local authority is responsible for “specific duties” in relation both to where they live and also to their maintenance and care (s23 of the CA 1989). It should be identified that those that receive short break overnight provision (unless it is more than 75 nights a year or 17 days in pa placement in total would not be “looked after” – this concerns those who will be living – for a temporary or longer period – away from home. There is a specific duty to “safeguard and promote” the welfare of children in local authority accommodation. They must give due consideration to the wishes and feelings of children when making decisions (s22(4) and (5)). They have duties in respect of accommodation, and in particular to (s22A-s22F):

• Place the child in the most appropriate placement available (s22C(5) if they cannot be place with parent, or other person for whom a “child arrangements” order has been made.
• Place the child in the geographic area of the local authority, unless that is not reasonably practicable (s22C (9) and
• Ensure, again so far as is reasonably practicable so that the placement is close to home: does not disrupt their education or training: and is suitable to the child’s disability - s22C (8)).

106. There are a series of specific regulations, regulating local authorities on how and what considerations need to be made when looking after children. These include the Care Planning, Placement and Case Review (England) Regulations 2010, backed up by extensive statutory guidance (CA 1989 Guidance and Regulations: Volume 2: Care planning, placement and care review June 2015 and Promoting the health and wellbeing of looked after children). This includes:

• (a) Assessing their health needs and addressing them through a care plan
• (b) Ensuring that a doctor assess their state of health
• (c) Preparing a placement plan as to how a placement will meet their needs
• (d) Ensuring that visits are made every 6 weeks for the first year of the placement and thereafter at least every 3 months /6 weeks (depending on the “permanence” of the placement
• (e) Carrying out reviews at first more frequently and then every six months.

107. For those with disabilities, the guidance makes the point clearly that:

• (a) Specialist care should continue where possible:
• (b) There needs to be thorough assessment of someone’s disability related needs and the accommodation should be suitable to meet those needs:
• (c) To try and accommodate those with disabilities in a familial type setting of foster care rather than further away from home:
• (d) To give the same access to play, recreation, and gardens as those without disabilities living in the home.

108. Where children are provided with accommodation by the education department, or the NHS these bodies should notify relevant local authority children’s services under s85 and s86 of the CA 1989. Some children who live in boarding accommodation providing for their educational needs under an EHC plan will be “looked after” children. Some will attend for more than 38 weeks a year which makes it more likely that they will be considered a looked after child but this will not necessarily be so. Advice needs to be taken about the precise nature of the provision and its purposes in order to ascertain if a child is (or should be) considered to be looked after in these settings. (63)

109. When someone who has been subject to a “transitional assessment” (or who is the carer of that person) becomes 18, the local authority has to decide whether this “transitional assessment” should stand as a needs assessment under the CA 2014 (s95(6): s61(6): s64(7))). To do this, the authority must consider the date of the assessment and whether any circumstances have changed (s59(7), s61(7) s64(8)). 

110. If someone’s needs are to be met under the CA 2014, then there should be a care planning process, including creating a care and support plan and a personal budget. Details as to this are set out in sections 18 – 33 of the CA 2014 and Chapter 10 of the Statutory Guidance (64).

111. The local authority and its partners are the corporate parents of young people who are looked after and they are responsible for offering parenting support and guidance in order for the young people to reach their fullest potential.

112. There are a set of comprehensive duties owed to all those who are “looked after” by the local authority to continue to provide a level of “comprehensive personal support” to “meet their potential” as they “transition to adulthood” (The CA 1989 Guidance and Regulations: Volume 3, planning and transition to adulthood for care leavers 2015, paragraph 1.3). These duties are compulsory and are backed up by statutory guidance which means that it must be followed unless there are good reasons not to do so.

113. The law in this area is again fairly convoluted but the leaving care duties apply to: 

(a) “Eligible children” (CA 1989 Schedule 2, para 19B (2) and Regulation 40 of the Care Planning, Placement and Case Review (England) Regulations 2010 SI No 959). These are those aged 16 and 17 who have been “looked after” for at least 13 weeks since the age of 14 and are still being looked after.

(b)  “Relevant children”. Children aged 16 or 17 who were “looked after” for at least 13 weeks since the age of 14 or were sometimes whilst 16 or 17 but are no longer looked after (s23(A)(2) and the Care Leavers (England) Regulations 2010, SI No 2571, Regulation 3). 

114. Anyone who therefore has been looked after for at least 13 weeks since the age of 14 qualifies (even if they are no longer looked after). But this does not include periods of “short breaks” or “respite care”. Disabled children who have such breaks or live in residential accommodation for less than four weeks at a time but not at any other time will not become “care leavers” (Care Leavers (England) Regulations 2010, Regulation 3(3)). 

115. The third category of those who qualify are “former relevant” children. These are those who were either “eligible” or “relevant” and are aged 18 - 25.

116. The duties imposed are different depending upon the category set out above.

• (a) Eligible children: have to be provided with the various provisions of any “looked after child” (see above), but they can have a “needs assessment” leading to a pathway plan (CA 1989 Schedule 2, paragraph 19B (4)), and to have a personal adviser (CA 1989 Schedule 2 paragraph 19C).
• (b) Relevant children are entitled to a pathway plan and personal adviser (s23(B)(3) and s23(B)(2)). But they are also entitled to be “supported and maintained” by the local authority unless the “child’s welfare does not require such support and maintenance” (s23B (8). This decision is that of the local authority but could be subject to enforcement by way of complaint or judicial review. This duty includes meeting a child’s needs in respect of education, training or employment as provided for in their pathway plan (Care Leavers (England) Regulations 2010, Reg 9). They must also try to establish contact with them if they have lost touch (s23B (11) of the CA 1989).
• (c) Former relevant children: they are entitled to a personal adviser until the age of 25 and have a pathway plan (s23C (3)). This would include those who return to the local authority and request support between the ages of 21 – 25. They also are entitled to assistance with employment, education and training (s23C(4)(a) and (b)). They must also be provided with other support “to the extent that the person’s welfare requires it” (ss23C (4)). This can include the provision of accommodation (65) although only if accommodation cannot be provided using other statutory responsibilities. They must also try and keep in touch, and if they lose touch, to re-establish contact.

117. These are people appointed by a local authority to “support and befriend” them- and they should have a choice of person (Children’s Act 1989 Volume 3 Guidance 2010, paragraphs 3.24 - 3.3). Their duties include: (Care Leavers (England) Regulations 2010, regulation 8):

• Providing advice and support
• Co-ordinating service provision
• Participating in pathway plans and reviews
• Remaining with the young person until they are in early adulthood.

118. A “needs assessment” should take place within 3 months of someone’s 16th birthday (Care Planning, Placement and Case Review Regulations SI No 959, Regulation 42(1) and Care Leavers Regulations 2010 Regulation 4). Young people should be involved in the assessment (Regulation 5(4) of the Care Leavers (England Regulations). This should include:

• (a) The health of the young person.
• (b) Their emotional and social development.
• (c) Their educational needs
• (d) Their training needs
• (e) Their employment needs
• (f) Their financial needs
• (g) Their care and support needs.

119. Much of this for young people with a learning disability, autism or both may well be identical to the provision made for them if they have an EHC plan. It may also replicate the information set out in a transition assessment and needs assessment under the CA 2014. Under the “tell us once” provision it may well be that this “needs” assessment can be amalgamated with others.

120. Following on from the assessment, a plan needs to be produced “as soon as possible” after the end of the assessment (Care planning Regulations, Regulation 43(1) and Care Leavers (England) Regulations 2010, Regulation 5(3)). This should cover the issues in the assessment. Again, when deciding this, social services must ensure that young people are “central to the discussions and plans for the future and it will be exceptional for decisions about their futures to be made without their full participation” (CA 1989, Volume 3 Guidance, 2015, paragraph 3.32). This is even if they are unco-operative (R(J) v Caerphilly BC [2005] EWHC 586 at [56]).

121. Pathway plans should also have contingency plans written into them (Care Planning, Placement and Care Review (England) Regulations 2010 Schedule 8, paragraph 10 and Care Leavers (England) Regulations 2010, Schedule 1, paragraph 4). They should be reviewed every 6 months to make sure that the plan responds to the needs of the young adult and establishing that their accommodation is appropriate and suitable (CA 1989 Volume 3 Guidance 2015, paragraph 3.2)). Pathway plans should indicate:

• Who
• Will do what
• At what times
• Including the identification of specialist support. (See: R (J) v Caerphilly BC [2005] EWHC 586 (2005) 8 CCLR 255).

122. Section 66 of the CA 2014 enables Children’s Services to continue to provide services for those over 18 if this is in their best interests, and there should be continuity of service provision until Adult Services have taken relevant steps by either:

(a) deciding that someone does not need care and support as an adult

(b) decides that they do have such needs and begins to provide support and care or 

(c) decides that needs exist, but the eligibility criteria means that they do not need to meet them (Care and Statutory guidance paragraphs 16.63 - 16.67). Both the SEND Code (at paragraph 8.67) and the Care Act guidance (paragraph 16.66) identify the need for continuity and no “gap” in provision of care.

123. This ability to continue to provide services over 18 is also replicated in the CA 1989 - section 17ZG which enables those with EHC plans, then the local authority providing CA 1989 services (under s17 of the CA 1989 ) may (but not must) continue to provide services whilst the EHC plan is being maintained. Again, this provision is expressly designed to aid transition and to stop a “cliff edge” or gaps in care.

124. Similar provisions exist for those in foster care: under s23CZA of the CA 1989, those in such foster care can “stay put” to ensure that transition from being “looked after” to being an adult is based upon need, and not age alone and to try and provide the type of “corporate parenting” that recognises that love, support and care are usually needed and provided over the age of 18. So, this provision can be made for those over the age of 18. The government extended duties to young people who were formerly in care from age 21 to 25 under the Children and Social Work Act 2017 in recognition of the needs of this group to be provided with support, education, and assistance.

125. It is essential that there is good planning for transition to avoid what the Care Quality Commission (CQC) has described as putting the needs of the system before the people it is supposed to serve. (66) An essential factor is that a disabled young person may well move from paediatric (i.e. children’s) healthcare to adult healthcare when they are 16 - and not 18 - as young people are seen in the law to be able to make their own decisions about medical care from this age (s8 of the Law Reform Act 1969).

126. There is a lot of policy and guidance around the support of young people during this period and agreed principles. But they are sometimes not reflected in practice. The NHS Constitution expressly says that young people should be treated in an “integrated” and “person centred way”. This constitution is not a document which creates individual rights but does provide an overall context and guideline for care and treatment.

127. The National Institute for Health and Care Excellence has produced a set of guidelines called: Transition from Children’s to Adults’ services for young people using health or social care services (February 2016)- The Transition Guidance for NHS and Social Care Services. It follows on from policy guidance issued in 2006 - Transition: getting it right for young people published on 23 March 2006 (67). This is designed to try and ensure that practice reflects the policy. NICE guidance is not “statutory” i.e. it does not have to be followed, but it would be used by a court if a challenge were to be made as to what is seen as “good practice” or “reasonable expectation” of the service.

128. Children and Adolescent Mental Health Services (“CAMHs”) sees children with a wide range of mental health conditions and problems.

129. There is no specific statutory framework for CAMHS. The service is provided as part and parcel of the responsibility to run a National Health Service. If a child or young person (there is no lower age limit) meets the criteria for detention under the Mental Health Act 1983, then they can be placed in a hospital and given compulsory treatment. There are a series of rights of appeal against decisions against such compulsory treatment and detention under the Mental Health Act 1983 which can be exercised by children and young people, and there is a Mental Health Review Tribunal to examine decisions made under the MHA 1983. Current MHA reform aims to tackle increasing use of the MHA 1983 for those with autism and behaviour that challenges.

130. There is a Code of Practice for those who are subject to the Mental Health Act 1983 - which has to be followed unless there are exceptional reasons not to do so. (68)This has an entire chapter about detention, treatment and care of young people under the age of 18 who may require such services (Chapter 19) and a Chapter about those with learning disabilities and autism (Chapter 20).

131. For those under the age of 16, parents can give consent for a child to be placed in a mental health specialist unit or facility if the young person is not competent to do so, and this can be on an informal basis.

132. If a child or young person has been kept in a mental health facility under the Mental Health Act 1983, when they are released, they are entitled to be provided with support services under s117 of the Mental Health Act 1983. These services are the responsibility of both the NHS and the local authority - and must be provided free of charge and can cover a wide spectrum of services - the only touchstone being that they must be required because of the mental health need, and not a more general need that a person has - for example providing someone with a flat, unless that flat is allied to specialist support services which come in to help with mental health disorders, will not be a service provided under s117 of the Mental Health Act 1983. (69)

133. The Mental Health Bill was introduced in June 2022 (70). It was subject to “pre legislative scrutiny” and a report was published in January 2023 (71) which recommended strengthening reforms to address rising detention rates. The government had to respond to this report by March 2023 and will then either amend the bill or keep it as is and have it go through the legislative process.

134. For those with a learning disability, autism or both, the major change will be that they will be treated in the same way as the rest of the population. They will only be detained for treatment if they have a co-occurring mental health condition, and people would not be detained simply because they are autistic or have a learning disability. There is a strong emphasis upon reducing reliance on inpatient services for those with a learning disability, autism or both. The Bill seeks to abolish the current criteria under the Mental Health Act 1983 which provides that those with autism and a learning disability can, in some circumstances, be detained because of those conditions. The Bill states that neither autism, nor a learning disability, are grounds for detention in and of themselves.

135. The criteria for detention under the Act will also be heightened so as to avoid, on a “risk averse” basis, those with autism and/or a learning disability being detained. Detention should only take place if there is a “substantial likelihood of significant harm” to the health, safety and welfare of the person, or the safety of any other person. There will also be significantly enhanced rights to go to the specialist mental health tribunal to challenge the detention. It is unlikely that this Bill will become law before mid-2024 or even 2025.

136. Continuing healthcare for those under the age of 18

Some young people will have been in receipt of what is known as “continuing healthcare” when aged under 18. This means that they have a package of care and support because of their health needs which should be met by the NHS. This is specifically provided for them because their needs cannot be met by the existing “universal” or “specialist“community services (so for example it goes beyond what the local speech and language team can meet, beyond what a GP can meet). The test (which is not easy to apply in practice) is whether or not the “scale and type of nursing care” is beyond, either in quantity or quality, that which can be offered by the local health authority. (72) The Department of Health has specific guidance (which those bodies responsible for health provision should follow) for those under the age of 18 who may need such care - the National Framework for Children and Young people’s continuing care. This framework provides that every child or young person referred to the NHS with possible “continuing care needs” should be offered a “comprehensive” assessment by a relevant health assessor. This assessment should:

• (a) Consider the preferences of the child and their family for what care is required and how it is to be delivered (for example at home, by outpatient visits, by inpatient care)
• (b) Be holistic - so take account of the needs of the family and undertake a carer’s assessment (see above)
• (c) Consider all relevant reports from health, social care and educational professionals.

137. Eligibility for packages of continuing healthcare for children and young people does not mean that all relevant social and healthcare services have to be met from the NHS. For autistic people or people with a learning disability, they would also have services provided by the local authority and education. There are often (and should be) tri-partite funded arrangements which examine how such packages of care are to be put in place. There is a general expectation that a child’s or young person’s needs should be met jointly by all parties involved in their care (i.e., a combination of children’s’ services, health and education authority input). A child’s care package can therefore be formed of contributions from all the relevant bodies or a combination. It is important that parents, carers, and those giving advice, support and services understand and explain any distinctions between Children’s and Adults’ Continuing Healthcare. (See below)

138. Adult continuing healthcare has a different meaning to that relating to children. Someone qualifies for adult continuing healthcare if they meet the criteria set out in the framework which comes from caselaw - set out in the National Framework for NHS Continuing Healthcare. Implementing this involves some understanding of the divide that exists between health and social care services. If someone is found to be eligible for continuing healthcare as an adult, they are usually fully supported in terms of funding by the NHS, although the management of their care package can be undertaken by the Local Authority Adult Social Services Social Care team.

139. Adult Continuing healthcare services are available to those who have what is called a “primary health need”. The definition (as set out at paragraph 55 of the National Framework Guidance) is if:

Having taken account of all their needs (following completion of the Decision Support Tool), it can be said that the main aspects or majority of the care they require is focussed on addressing and/or preventing health needs. Having a primary health need is not about the reason why an individual requires care or support, nor is it based on their diagnosis: it is about the level and type of their overall actual day to day care needs taken in their totality….Each individual case has to be considered on its own facts in accordance with the principles outlined in his national framework.2

140. What this means is that those needs which relate to the treatment, control, management or prevention of a disease, injury or disability, or the care or after care of a person where these needs are a “health need” (paragraph 50 of the framework).

141. The NHS Continuing Healthcare Framework for Children at pages 21 onwards sets out guidance on transition planning. The adult guidance also sets out parallel guidance in its framework (73) This identifies the following steps:

• (a) At 14, the young person should be brought to the attention of the health authority as likely to need an assessment for NHS Continuing Healthcare.
• (b) At 16-17, the NHS continuing healthcare assessment should be undertaken and an agreement reached in principle as to whether or not someone has a primary health need and therefore will need adult continuing healthcare over the age of 18.
• (c) At 18, full transition to adult NHS continuing healthcare or to other services, except where this is not appropriate. The idea is meant to be that health plans and all other assessments should have taken place before someone reaches the age of 18 (paragraph 121 of the Children’s Continuing Healthcare guidance).
• (d) If someone is not going to be eligible for adult continuing healthcare (and as the parameters for the grant of such care are limited, this may well be the case for all but those with the most severe and complex of interrelating physical and/or cognitive needs), then they should be told of this and of their right to request an independent review of this via NHS appeals process.

142. In some cases, just as with education and social care, it is possible to continue with services provided under the Children’s Continuing Healthcare framework beyond the age of 18 if that is needed to stop a gap in service provision, or because no other provision is available to meet need. The Children’s Continuing healthcare guidance makes it clear that “no services or funding should be unilaterally withdrawn unless a full joint health and social care assessment has been carried out and alternative funding arrangements have been put in place” (paragraph 125).

143. The health authority which currently provides continuing healthcare should seek to work with other bodies - such as education - to see if they should continue to commission, fund, or provide services as part of an Educational Health and Care (EHC) plan. The principle is that transition should be planned in advance to avoid disruption.

144. Many young people with complex learning disabilities, autism or both will have an Educational, Health and Care plan - known in this note as an “EHC” plan. These plans can be in place until someone’s 25th birthday (or the end of the academic year when they turn 25). Part 3 of the CFA 2014 outlines the statutory duties of local authorities, health and social services in assessing and providing these plans. In the legislation, a “young person” is someone over compulsory school age but under the age of 25. “Compulsory school age” starts from the beginning of the term following a child’s fifth birthday until the last Friday of June in the year in which they become 16 (as long as they are 16 before the start of the next academic year). (74) All young people have to continue in some form of education or training until at least their 18th birthday. This does not mean school, as it can include part time education with volunteering, apprenticeships, or study in schools, colleges or with a training provider (75).

145. An EHC needs assessment can be asked for by someone’s parent, or the young person themselves if they are between 16 and 25 and have capacity to do so. If they do not have capacity, then an “alternative person” can make a request i.e. a parent or representative. A school or post 16 institution can also make a request. In particular, there is nothing to stop those over 16 asking for an assessment for the first time (76). Others involved with young people can bring this option to their attention. This would include health and social care professionals. If the local authority, consider that: the young person has or may have special educational needs and it may be necessary for the special educational provision to be made for the child or young person in accordance with an EHC plan, then an assessment should be made. (77).

146. In relation to a young person over the age of 18, the local authority must consider, when deciding if an assessment is required, whether they require additional time in comparison to the majority of others of the same age to complete their education and training (78).

147. The assessment process has a set period of time to be followed, and a range of professionals who should be consulted (set out in some detailed in the SEND Regulations 2014) who should respond within 6 weeks of the request for advice (Regulation 8 of the SEN Regulations 2014). There should be a person-centred approach (paragraph 9.22) to assessment, with engagement and consultation with the young person and their parent. Within 16 weeks of such an assessment the local authority must identify whether or not a plan is to be issued (Regulation 10 of the SEN Regulations). Where a plan is to be issued, a young person should get a draft plan 15 days ahead of the 16 week deadline to provide their views, and then a final plan is issued. The entire process should take no more than 20 weeks (Regulation 13 of the SEN Regulations 2014). When deciding whether to issue a plan (paragraphs 9.54 - 9.55) of the SEN Code sets out the factors to consider when deciding whether to issue a plan. This should include: 

• The young person’s special educational needs and special educational provision made for the young person.
• Whether the information from the EHC needs assessment confirms the information on the nature and extent of the young person’s SEN prior to the EHC needs assessment.
• Whether the special educational provision made prior to the EHC needs assessment was well matched to the SEN of the young person.
• Whether the provision can be made from those normally available to post 16 institutions or
• Whether it may be necessary for the local authority to make special educational provision (79).

148. The format and information set out in an EHC plan is set out in the SEND Code of Conduct (see chapter 9). In essence the EHC plan must set out:

• The views and interests of the young person (Part A - this is not enforceable)
• The child or young person’s special educational needs (Part B - this should set out what someone can and cannot do). If unhappy with the contents of this section, the young person has a right of appeal to the SEND Tribunal (80) which has the power to amend the needs.
• Their healthcare needs (Part C) If unhappy with the contents of this section, if there are also educational needs/provision being appealed, then the young person can ask the SEND Tribunal to make “recommendations” (81) about what should go into this part of the plan.
• Part D - social care needs relating to a disability/SEN. Again, if a young person is unhappy about how this is set out and there are also concerns about educational needs, then “recommendations” can be made.
• Part E - outcomes (not appealable)
• Part F - special educational provision required by the child or young person - this can be the subject of an appeal to the SEND Tribunal. This should include all provision which “educates” or “trains” (s21(5) of CFA 2014) no matter which sort of body provides it. For example, speech and language therapy even if provided by the NHS plainly educates and trains. But medical and nursing support is not special educational provision (ESCC v JC [2018] UKUT 81 (AAC)).
• Part G - any healthcare provision reasonably required by the learning difficulties or disabilities which result in the child or young person having special educational needs - can be subject of recommendations.
• Section H1 - any social care provision which must made for the child or young person as a result of s2 of the Chronically Sick and Disabled Persons Act 1970 and
• Section H2 - any other social care provision reasonable required by the learning disabilities which result in the child or young person having special educational needs (section H2) - can be the subject of recommendations.
• Section I - the name of the school, post 16 institution or other institution to be attended by the child or young person and the type of institution, or where the name of the institution is not specified, the type of school or institution - can be appealed to the SEN Tribunal.
• Part J - direct payments - not the subject of any appeal.

149. For placements under EHC plans, a local authority has to consult with the relevant governing body ((s39(2) of the Children and Family Act 2014). The Act provides that a young person has a qualified right to ask for a placement to be named in their EHC.

150. The local authority can refuse where:

• (a)The place is unsuitable for the age, ability, aptitude or SEN of the child or young person concerned;
• (b)  It would be incompatible with the efficient use of resources - this is the cost of public purse generally.
• (c) It would be incompatible with the efficient education of others - and by others, it must be those who would be in the class with, or be part of the same cohort/framework, and there are no reasonable steps which could be made to prevent this incompatibility if it is a mainstream provision (82).

151. Where provision is named in the EHC plan, there is an obligation on local authorities to secure the special educational provision, and if named, even independent institutions have to admit young people (as long as the authority pays their fees).

152. From Year 9 onwards (when someone turns 14), the EHC plan must include the provision required to assist in preparation for adulthood and independent living, for example, support with finding employment, housing or for participation in society (83). For any transfer between secondary education (broadly until someone is either 16 or 18) and then post 16/18 education, the local authority must review and amend the plan by 31 March of the year they are due to go to post 16 institutions. When someone is to be transferred from one post 16 institution to another, then the plan must be reviewed and amended at least five months before that transfer takes place to name the post 16 institution which is to be attended (84).

153. There is no automatic requirement or assumption that someone will or will not have an EHC plan until they are 25. Section 45 of the CFA 2014 provides that there are only two bases upon which the local authority will “cease to maintain” the plan. These are:

• If the local authority is no longer responsible for the child or young person. Largely when they move to another local authority area.
• If it is no longer “necessary” for the plan to be maintained. Necessary has been held to mean by the courts as “somewhere between indispensable and useful and reasonable” and will depend upon the nature and extent of the provision for the child concerned (Nottinghamshire CC v SF and GD [2020] EWCA Civ 226). This can include when they no longer need the provision specified in the plan, because either the provision can be made in a “mainstream” placement without the need of a plan, or because the young person’s special needs no longer warrant a plan. 
• For those with significant learning disabilities, the courts consistently recognise that “education and training” does not involve taking formal courses of study or achieving national qualifications (although it can do). The courts have accepted that “education and training” can be about developing a young person’s independence, their choice making, their ability to communicate and their ability to undertake basic skills (85). 
• Deciding what is “necessary” in a post 16 institution does not mean that the local authority has to look at all the possible provision but to look at what is “typical” for young people of that age - in order to decide if the provision is still required - RBKC v GG [2017] UKUT 141. 

154. The local authority must, when deciding whether to keep the plan, be clear whether the “educational and training outcomes” in the plan have been achieved (s45(3) of the CFA 2014). Before ceasing any plan, the local authority has to inform the young person of this, consult the young person and the head of whichever institution the young person attends (s29-30 of the SEND Regulations 2014). The provision in the plan cannot be stopped until the appeal against any decision to cease to maintain has been decided (or at the end of the period when an appeal could be brought). 

155. For those over 16, there must still be an annual review of the EHC plan  (86), consulting the young person. In particular, there should be a focus upon the outcomes set out at section E of the plan and whether they remain appropriate. They must also consult the placement attended by the young person (87). This review should be a chance, where young people are involved with health and social care, for there to be a multi-disciplinary review as there is a duty to invite (with 2 weeks’ notice) both the young person, the head of the placement but also (88):

• relevant local authority officers in relation to SEN and social care 
• a healthcare professional identified by the ICB to provide advice about healthcare provision for the young person.
• advice should be obtained from those invited and circulate it at least 2 weeks in advance. 

156. Following the meeting, the person in charge of the placement must prepare a written report within 2 weeks of the review setting out any recommendations and amendments to the EHC plan and attaching all written reports received (89). Following this review, the local authority has to decide whether to maintain the plan, amend it, or cease to maintain it (90). If the plan is to be amended, they must send the parents this notification within 4 weeks of the review meeting and send out the proposed amendments (91): If they decide to amend, the final EHC plan should be sent within 8 weeks of sending the notice specifying the amendments, (92) so giving a 12-week timescale between the review meeting until the final plan is to be issued.

157. Just as with social care and health, those receiving EHC plans have a right to request a personal budget figure be included within the EHC plan (93). Direct payments are also available in theory, but they do not have to be provided by a local authority if they would impact upon the services provided in other ways e.g. a local authority could refuse to make direct payments for therapy services on the basis it would impact the services it provides directly to schools  (94). In reality therefore, direct payments are not used as frequently as may be expected in education.

158. The government published its SEND Review in March 2022, accompanied by a consultation. There is no proposal for radical change to the system, but for more investment and training. The principal proposed changes which may impact those with learning disabilities accessing the system are:

A Standard “digital” EHCP which will be in template format across the country - so avoiding variation.

The creation of new national SEND standards - to make consistent the provision, processes and systems which should be available for very young person. This will include “transition standards” to ensure there are “deliverable” arrangements in place to move to further education or employment. The standards will provide “consistency on the quality, timeliness and effectiveness of transitions for children and young people in both mainstream and specialist settings.” The nature of these standards is yet to be developed.

The creation of national eligibility criteria for the provision of social care and education.

Creating local SEND partnership arrangements to bring together all those in the system, convened by local authorities. They will work with parents to carry out assessments of need, examining what needs to change and creating a “local inclusion plan”. There may also be a move to regional commissioning for further education or for more specialist provision.

The introduction of mandatory mediation before SEND appeals.

The creation of a Designated Social Care officer - who is there to develop better engagement between SEND and social care.

More specialist schools and greater training and hopefully more specialist staff working in those schools.

Working, along with the Skills Bill to ensure that all Further Education colleges in the statutory sector review their provisions for SEND at least one every three years.

Re-emphasising the need to share information with colleges well in advance - by using common transfer files to share information quickly.

Better careers advice and job coaching for those with disabilities.

National Qualifications for SENCOS working in FE settings.

Investment in supported internships and traineeships.

Review of post 16 qualifications.

Creating an adjustments passport which sets out the support a young person needs for higher education or work.

SEND and alternative provision improvement plan. It is likely that a Bill will be introduced later in 2023 - so these proposals are likely only to become law (where that is needed) in 2024 or 2025

159. A social care review was published in the Summer of 2022 (95). It included ideas for changing the care system and for how social services look after children and provide services. There has been a focus on the needs of children with disabilities within the review. The government responded to this review in February 2023 with a paper “Stable Homes, Built on Love” (96) which was consulted on until 11 May 2023. The outcomes from the consultation (September 2023) “Stable Homes, Built on Love: strategy and consultation’ is the government’s plan for how we make children’s social care work better. This is a guide to that plan for children and young people”.

160. In respect of those with disabilities, the Government is commissioning the Law Commission to see how the law in respect of disabled children could be simplified and streamlined, so that entitlements, referral routes and processes are clearer. This is to be welcomed given the complexity of the law as it currently stands.

161. An EHC plan is not available to those who go onto higher education. There are, however, disabled students’ allowances. These are designed to provide support for the extra costs that can be incurred in accessing a university course. This can include:

• Specialist software/hardware
• Non-medical helpers - e.g., a note taker
• Extra travel costs
• Other costs

162. The relevant scheme provides that the maximum amount of support is up to £25,575 per year. You apply via “student finance” for the scheme, which involves obtaining a medical report as to the nature of your needs and potentially having an assessment undertaken (97).

163. When someone reaches the age of 18, young people with a learning disability or autistic young people often, like other young people, no longer want to live in the family home. Moreover, for some families, it is no longer possible for someone to continue to live in their family home. For those with complex learning disabilities or severe autism, “ordinary housing” may well not be sufficient to meet their needs. For some however, it will be. This guide touches briefly on the housing responsibilities of local authorities for “ordinary” housing below.

164. The care system effectively stops taking young people into care when they are 17. However, under s20 of the CA 1989, there is a power for young people to be accommodated until the age of 18. The nature of section 20 is set out above. The courts have identified that even those between 16 to18 are vulnerable and so the more specialist facilities provided by social services should always be considered, rather than just a bed and breakfast or another hostel. For those with learning disabilities, those sorts of placements would be unsuitable. There is specific guidance issued by the government which must be followed when looking at providing housing to those aged 16/17 who are homeless. LINK DOES NOT WORK

165. The Supported Housing (Regulatory Oversight) Act 2023 is aimed at improving conditions in exempt supported housing. 

166. There are likely to be different sorts of housing with support that those with complex disabilities are offered by a local authority to meet their combined housing and social care needs:

1. To own their own homes as part of shared ownership or HOLD, a government scheme to own your own home.
2. Their own tenancies, whether with the need for support or living independently:
3. Shared lives accommodation
4. Supported living or supported accommodation.
5. Residential care homes.

167. The approach taken to the provision of housing both by the Care Quality Commission and by local authorities is to seek to encourage those with learning disabilities and/or autism who require additional support to live in their own communities and homes with help, and not live in residential care homes in most cases. If they do live in communal housing, this should be with 2 or 3 others, potentially in a complex of homes next door or near to each other (98).

168. The CQC’s approach to the provision of accommodation and support for those with learning disabilities and autism is set out in their document “Right Support, Right Care, Right Culture”. In very summary terms, the model of care to be provided is either the provision of support to live alone if they prefer this, or to live with a small number of other people in shared housing with a small scale, domestic feel. This should be local, and community based.

169. Supported living simply means a place where a young person has a tenancy agreement for their accommodation (which as set out above in respect of capacity they may or may not be able to sign themselves. If not the Court of Protection can authorise the local authority or parent to sign on their behalf) but also has provided a package of care and support. The care and support are usually delivered by a separate body to the accommodation, and so they do not have to register as a care home (99). In most cases the provider of care services should, however, be registered with the CQC (the provision of certain forms of care - personal, intimate care is unlawful unless the provider is registered with the Care Quality Commission), which will inspect and regulate the provision of these services.

170. At present, those who receive “care, support or supervision” through their housing - for example living in a flat with 2 or 3 others where there are workers to provide support continuously or for much of the time which is part and parcel of the service signed up for - can claim housing benefit. This is claimed from the local authority which has a form to fill in. If, however, the person lives in supported or sheltered housing or are not getting “care, support or supervision” along with the housing, then the young person has to claim universal credit, which has an element of housing costs (although this tends to be less generous than that payable under housing benefit rules). Those being provided with care and support can obtain housing benefits at higher rates than for non-disabled people as long as it is for accommodation being provided by: a county council; a housing association; a registered charity; or a voluntary organisation (100). The “benefit cap” and rules about “under occupation” - which usually reduces one’s entitlement to help with housing costs - do not include this type of accommodation. They are referred to as exempt. Even if someone claiming housing benefit for your housing costs, someone will still have to claim universal credit in many situations for other elements of benefits and support. “Universal credit” is meant to apply to everyone from April 2023,

171. Where the local authority had decided that someone has a “need” which requires supported living, then they have the right to “express a preference” for particular accommodation and the local authority is obliged to provide it - even if it is in another local authority area (101). But if the placement is more money than the local authority considers is necessary, then it can require a top up payment from a third party to cover the additional cost.

172. If someone goes to live in supported accommodation in a different local authority area to that they are already living in, then the disabled person is still the responsibility of that original different area even though they live elsewhere if the accommodation meets the criteria set out in the Care and Support (Ordinary Residence) Specified Accommodation Regulations 2014. “Supported accommodation” is defined under the Regulations (Regulation 5 and Regulation 8 of the Care and Support (Ordinary Residence) Specified Accommodation Regulations 2014 ) as

• Being in premises specifically designed or adapted for occupation by adults with need for care and support to enable them to live as independently as possible
• Is provided in premises intended for occupation by adults with needs for care and support (even if not specifically designed for this) and
• Where personal care is available if required (which does not have to be provided by the person providing the accommodation).

173. Supported accommodation does not include someone’s home or flat which they lived in before any adaptations were made.

174. The CQC would usually not register a home for people with a learning disability for more than six people. The CQC’s guidance provides extensive advice which seeks to promote the ability of those with learning disabilities to live within their communities with dignity and autonomy.

175. Another form of home which can be provided for those with learning disabilities is the “shared lives scheme”. It used to be known as an “adult placements scheme”. The schemes (but not the individual shared lives carers) are regulated and registered by CQC. The person lives with a carer and shares family and community life with them. This can involve living with someone on a full-time basis or just for day support or for overnight breaks. As with supported living, someone has a right to “express a preference” for particular accommodation under shared lives schemes and these placements can be in another local authority area. Someone can still be ordinarily resident in the area where the person lived prior to moving to the shared lives placement. The best explanation of shared lives care can be found in the Care and Support (Ordinary Residence) (Specified Accommodation) Regulations 2014, Regulation 4 and 7. This defines “shared lives scheme accommodation” as:

• (a) Accommodation provided by a shared lives carer - an individual who provides or intends to provide personal care for adults together with accommodation in their home;
• (b) There is an agreement in place between the person undertaking the scheme and an individual for personal care and accommodation within that person’s home;
• (c) The scheme is that run by a local authority or others for the purposes of:
  • Recruiting and training shared lives carers
  • Deciding for the placing of adults with shared lives carers
  • Supporting and monitoring placements.

176. This scheme runs in parallel to the “staying put” scheme which enables those who have lived with foster carers until 18 to live there beyond the age of 18 (CA 1989, Schedule 2, paragraph 19B and paragraph 19BA).

177. A registered care home is defined in law under s3(1) and s3(2) of the Care Standards Act 2000. They can be run by local authorities, voluntary organisations, NHS bodies, charities or within the private sectors. It is defined as a home which provides accommodation together with personal care or nursing care (which can include psychiatric/psychological care) for people who (a) are or have been ill (b) have or have had a mental disorder (c) are disabled (there are other categories which are not relevant). Care homes are often defined by what they are not. They are not hospitals, children’s homes or establishments exempted under various regulations. However, a residential college that someone attends during term time has been held to be a care home and therefore need to be registered under the Care Standards Act 2000. (102)

178. All care homes have to register with the CQC and must comply with national minimum standards - so they have to have adequate staffing, services, facilities, and buildings. The CQC carries out a programme of inspections, and inspection reports are available on the CQC website. (103)

179. Where someone has had a needs assessment, and it has been found that their needs should be met by way of a care home, then they have the right to choose which home they are placed in (104). This means that the local authority is obliged to place someone in that preferred accommodation if:

• (a) The care and support plan specifies that their needs will be met by care home accommodation.
• (b) The preferred accommodation is of the same type as identified in the care and support plan.
• (c) It is suitable to meet the person’s needs.
• (d) It is available.
• (e) The management will accept the place on “local authority terms”.

180. A local authority is not entitled to provide housing to someone with care and support needs when their need identified is because of the young person’s homelessness. In legal language this is a need which a “housing authority” has a duty to meet under the Housing Act 1996. (105) The obligation to provide housing for those who are homeless depends on the nature of the local authority structure where someone lives. In London, other large urban areas and where there is what is called a “unitary” authority, the council has responsibility for housing. In non-urban areas, a district council often has responsibility for housing and the county council has responsibility for the provision of social care. The courts have held that if the need is solely for accommodation - which is called by the courts “bare accommodation” - and nothing more this does not enable the local authority to provide this accommodation by way of its adult social services duties (106).  Where someone does have a requirement for specially adapted accommodation, then the courts have found that the social services department could provide this (107).

181. If someone’s rights under the Human Rights Act 1998 are likely to be breached by failing to provide them with accommodation - ordinary or not - then the authority may have to provide accommodation under s1 of the Localism Act 2011 (this is only likely to arise if someone is likely to be subject to inhuman and degrading treatment by being homeless under Article 3 of the ECHR).

182. Local authorities maintain registers – often called “housing lists” of those who are waiting for accommodation provided by social landlords (either an authority, or a registered social landlord – usually a housing association). As part of designing this list, a local authority must give “reasonable preference” to those who need to move because of their disability, or on “welfare grounds”. Local authorities have to publish these rules which should explain how the list operates and who has preference to possibly obtain social housing (108). Young people can apply to be placed on the housing list if they are 18 or over. Some councils set the age at 16.

183. These rules are often called “allocation schemes”. Whether someone is on the housing list may well be relevant to any assessment of their social care needs, or those of their carers. There are joint duties of co-operation between housing authorities and others to ensure that the housing needs of disabled children are met (109).

184. People with a learning disability or autistic people may, in particular if their relationship with their family members has broken down, or they can no longer house them, or the housing they live in is not suitable for the young person’s needs, be considered “homeless” under Part VII of the Housing Act 1996. Someone is homeless if:

1. They do not have accommodation which it “would be reasonable” for him or her to occupy (s175(3) of the Housing Act 1996) and:
2. They are in priority need - which includes mental illness, handicap or physical disability or other special reason (s189(1)(c ) of the Housing Act 1996).

185. Someone can be “homeless” therefore even if they have a home if that house is not suitable for their needs. Any assessment of someone’s needs for a home under the homelessness duties should take account of individual circumstances, taking into account someone’s disability and in particular the likely physical space, adaptations or specialist provision required.

186. Every “housing authority” has to have a homelessness strategy which should include arrangements to provide support for those at risk of homelessness (110). There is a code of guidance which authorities must follow which includes the fact that homelessness should be prevented where possible by local authorities working together with those responsible for the provision of housing to try and prevent homelessness of children and adults with disabilities (111). If someone comes to the attention of the housing department and has, for example, clear social care needs, then they should be referred to the social care team for assistance.

187.If they are not “’intentionally homeless’ (which is where someone has been evicted when it is broadly their “fault”), the local authority should provide accommodation for the person (and anyone else who should reasonably be considered to live with them) under s193 of the Housing Act 1996. If someone requires specially adapted accommodation, then adapted accommodation should be offered in order for the duty under the Housing Act 1996 to be discharged, or where, even if it is not currently specially adapted, it could be (112).

188. This guide is not exhaustive and is not a substitute for detailed advice on particular circumstances. We hope, however, that it provides signposting for those working in social care and law in councils and prompts further discussion and consideration.

1. In this case, palliative care means provision for those who have a life limiting condition and require health and psycho-social support for this.
2. Source National Autistic Society website
3. How common is learning disability?
4. The medical diagnosis of autism is set out in the DSM V which is the standardised manual used by American Psychiatrists but is commonly used in England and well: there is also ICD 11, which again is a diagnostic tool produced by the World Health Organisation.
5. These list of difficulties were taken from the National Autistic Society website
6. National Autistic Society website
7. The exact reference is 
8. Draft MCA Code of Practice: Summary
9. Commission for Social Care Inspection (CSCI) Growing up matters: better transition planning for children with complex needs.
10. S20(7) of the EQA 2010
11. R (Baker) v Local Communities [2008] EWCA Civ 141
12. Hotak v LB Southwark [2015] UKSC 30
13. In Brown v SSSWP [2008] EWHC 3158 and then again in Bracking v SSWP [2013] EWCA Civ 1345.
14. Schedule 19 of the EQA 2010 and the Equality Act (Specific Duties) Regulations 2011
15. Savage v Essex CC [2008] UKHL 74
16. Changes to LeDer - Learning from Life and Death Reviews of people with a learning disability and autistic people
17. Price v UK [2001] 34 EHRR 1285
18. Dordevic v Croatia [2012] 15 CCLR 657
19. Z v UK [2002] 34 EHRR 97 and In re F [2000] 3 WLR 1740
20. Assenov v Bulgaria [1998] 28 EHRR 652 and R(B) v DPP [2009] EWHC 106
21. Sentges v Netherlands 
22. Botta v Italy [1998] 26 EHRR 241 and R(A) v East Sussex CC [2003] EWHC 167
23. See Bank Mellat v UK [2014] UKSC. At 54 where a detailed description is given
24. Gaskin v UK [1989] 12 EHRR 236.
25. R(Coughlan) v North East Devon [2000] and Gunter [2005] EWHC 1894
26. R(Bernard) v LB Enfield [2002] EWHC 2282.
27. Kutzner v Germany , 26 Feb 2002, re: C [204] EWCA Civ 21 Jan 2014, Kocherov v Russia, application no 16899/13.
28. R(SC) v SSWP [2021] UKSC.
29. The national strategy for autistic children, young people and adults: 2021 to 2026
30. Guidance on meeting the needs of people with Down Syndrome
31. As at February 2023, the guidance had not been published. Down Syndrome Act 2022 guidance: call for evidence (closed)
32. B v RM [2010] EWHC 3802.
33. The Family Court deals with all cases concerning the care and upbringing of children and is subject to a set of rules known as the Family Procedure Rules. The Court of Protection deals with cases concerning the capacity of those over the age of 16 and health, welfare, property and financial disputes relating to those who lack capacity who are over the age of 18.
34. Parental responsibility as a legal concept defined at s3(1) of the CA 1989- which is all the rights, duties, powers, responsibilities and authority that a parent of a child has in relation to the child and their property. It is not just parents who can have parental responsibility: for a detailed examination please see the CA 1989. For those over the age of 16, parents cannot consent to deprivations of liberty - re D [2019] UKSC 42.
35. There is a helpful analysis of children’s capacity, parental responsibility in respect of medical treatment in the case of Bell v Tavistock and Portman NHS Foundation Trust [2021] EWCA Civ 1636.
36. Orders made under s8 of the CA 1989t, such as a specific issue order.
37. Gillick v West Norfolk [1986] AC 112.
38. The guidelines of Lord Fraser were (in summary form and this relates to the specific issue that the courts had to decide which was about capacity to make decisions independent of one’s parent about contraception if you are under 16. A doctor could prescribe such contraception if
39. Re H (Minors) [1996] 1 FLR 80 at 586.
40. A Local Authority v AK [2012] EWHC B29 (COP).
41. Kings College Hospital Trust v C [2015] EWCOP 80 at [37-380 and V
42. PC v City of York [2013] EWCA Civ 478 at [58].
43. Section 4A and section 4B of the Mental Capacity Act 2005.
44. Cheshire West [2014] UKSC 19 at [ 37]
45. Re A-F (Children) [2018 ] EWHC Fam 138 at 43.
46. Re A-F (Children) [2018] EWHC 138 at 553).
47. Re AB (Consent) [2015] EWHC 3125.
48. See the Family Court Guidance on this topic for more information: it is NOT designed to deal with cases under the MCA 2005, but those relating to young people where either (a) unregulated placements are required or (b) they require the equivalent of secure accommodation under s25 of the CA 1989 but none is available.
49. As at 6 February 2023 the government had not produced final version of either of these. Mental Capacity Act 2005 Code of Practice which sets out the principles which will apply.
50. The Mental Capacity (Deprivation of Liberty: Assessments, Determinations and Pre-Authorisation Reviews) (England) Regulations 202X
51. SEND review: right support, right place, right time
52. A transition guide for all services: key information for professionals about the transition process for disabled young people
53. S26(1) of the CFA 2014.
54. S28 of the CFA 2014.
55. S31(2) of the CFA 2014.
56. Chapter 19 of the Care and Support Guidance provides helpful guidance which local authorities must take account of when making decisions.
57. Moving between areas: inter-local authority and cross-border issues, Care and support statutory guidance
58. Children’s services include all educational provision and planning alongside social care provision for children and young people - there must be a Director of Children’s Services in every local authority under the Children Act 2004.
59. S17ZA(3) of the CA 1989, 17ZSD AND S17ZE.
60. R v LB Islington ex parte Rixon [1998] 1 CCLR.
61. R(J) v Caerphilly [2005] EWHC 586: [2005] 2 FCR 153.
62. R(G) v LB Southwark LBC [2009] UKHL 26.
63. R(0) v East Riding [2011] EWCA Civ 196.
64. The most up to date form of the guidance: Person-centred care and support planning (Care and support statutory guidance)
65. R(O) v Barking and Dagenham LBC [2010] EWCA Civ 1101.
66. Care Quality Commission report: From the Pond into the Sea (2014)
67. Transition: getting it right for young people
68. R(Munjaz) v Mersey Care NHS Trust [2006] 2 AC 148.
69. R(Mwanza) v Greenwich LBC [2010] EWHC 1462.
70. Draft Mental Health Bill: Volume 717: debated on Monday 27 June 2022
71. Government urged to strengthen draft Mental Health Bill
72. This division has come about because under the law as it is, a local authority cannot in law provide nursing care. But there is no real definition of what is nursing care, and many tasks for those with disabilities can often be provided by either nurses or other trained individuals (for example suctioning someone with a tracheostomy, changing a PEG tube) - see s22 of the CA 2014.
73. P88 of the 2019 framework guidance.
74. S83(2) of the CFA 2014.
75. Education and Skills Act 2008, and DFE statutory guidance - Participation of Young people in education, employment or training 2014, Annex 1.
76. SEN Code of Practice paragraph 9.115.
77. S36(8) of the CFA 2014.
78. S36(10) of the CFA 2020.
79. SEND Code paragraph 9.56.
80. The SEND Tribunal has the powers set up under the Children and Families Act 2014. It provides a right to appeal against (a) the refusal to undertake a statutory assessment of someone’s needs (b) the refusal to issue an EHCP (c) the contents of an EHCP (d) the refusal to re-assess and/or amend an EHCP and (e ) any decision to cease the EHC plan. It is a first-tier tribunal and is governed by its own rules: see First-tier Tribunal (Special Educational Needs and Disability)
81. Under the SEN (Extended Trial) Regulations 2019.
82. S33(2) and s33(3) of the CFA 2014 and SEND Code of Practice paragraph 9.90.
83. Regulation 12(3) of the SEND Regulations.
84. Regulation 18(2) of the SEN Regulations.
85. Buckinghamshire v SJ [2016] UKUT 254 (AAC).
86. Section 44 of the CFA 2014 and SEND Regulations 2014, regulation 18 along with
87. SEN Code of Practice paragraph 9.178 plus Regulations 19 - 20 of the SEN Regulations 2014.
88. Regulation 20 of the SEN Regulations.
89. Reg 20 of the SEND Regulations 2014.
90. Regulation 20(10) of the SEN Regulation 2014.
91. Reg 20(10) of the SEN Regulations 2014 read with Regulation 22(2)(a) of the SEN Regulations 2014.
92. Reg 22(3) of the SEN Regulations. This was interpreted by R (L, M, P) v Devon CC [2022] EWHC 493 (Admin).
93. S49(1) of the CFA 2014.
94. Under the SEN Regulations 2014.
95.  Independent review of children's social care: final report
96. Stable Homes, Built on Love: Implementation Strategy and Consultation: Children’s Social Care Reform 2023
97. Help if you're a student with a learning difficulty, health problem or disability
98. Services for autistic people and people with a learning disability and Housing for people with a learning disability or autistic people
99. Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 SI No 2936.
100. Housing Benefit Regulations 2006 SI no 217, Schedule 3, paragraph 4/10 and CH/426/20065, CH/3811/2006 .
101. S30 of the CA 2014 rad with the Care, Support and After Care (Choice of Accommodation) Regulations 2014, SI No 2670).
102. SA v Secretary of State for Work and Pensions (IS) [2010] UKUT 345.
103. Find a care home
104. Reg 2 of the Care, Support and After Care (Choice of Accommodation) Regulations 2014. SI 2014/2670.
105. S23(1) of the CA 2014.
106. R(GS) v Camden [2016] EWHC 1762 and R(SG) v Haringey LBC [2015] EWHC 2579.
107. R(Hughes) v Liverpool City Council [2005] EWHC 428 (Admin).
108. S166A of the Housing Act 1996.
109. S213 of the Housing Act 1996 and s10 of the Children Act 2004.
110. S3 of the Homelessness Act 2002.
111. Homelessness Code of Guidance for local authorities 
112. Boreh v Ealing LBC [2008] EWCA Civ 1176.

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