Challenging behaviour and positive behaviour support at home

NICE guideline NG11, which covers behaviour that challenges in people with a learning disability, asks everyone involved, family included, to understand that the behaviour often indicates an unmet need, and that the way people respond to it can keep it going. That second point is hard to hear, and it is not a criticism. It means the answer usually lies in changing things around the person rather than changing the person, which NICE sets out as the aim of any support.

A person may have few or no words, and even someone who talks well may not be able to explain pain or fear when it matters. The Challenging Behaviour Foundation describes the behaviour as something people learn to use because it has worked before, not as something deliberate. If hitting out once got a noisy room emptied, it is likely to happen again the next time the room is noisy.

NICE lists the things that make it more likely, including autism, communication difficulties, physical health problems, too much or too little going on, and changes such as new staff or a move. If your son or daughter is autistic, autism support at home covers the sensory side and meltdowns in more detail, and the learning disability family guide is where to start on everything else. The disability care pillar has the wider picture of support at home.

The Challenging Behaviour Foundation warns about diagnostic overshadowing, where the behaviour is put down to the learning disability and the health problem underneath is missed. If you think that is happening, ask what has been ruled out. You know how your son or daughter shows pain, and that knowledge is evidence.

Anyone aged 14 or over on the GP's learning disability register can have a free annual health check, and NICE asks for it to include a review of any behaviour that challenges and how it may link to a physical health problem. The annual health check explains how to get the most from it. Write down how the person shows pain in the hospital passport too, so that anyone treating them in hospital can read it.

1. 1

   Describe the behaviour clearly

   With the family

   What it looks like, how often, how long it lasts, and what effect it has on the person and those around them. You will be asked because you see it most.
2. 2

   Keep a record for a few weeks

   At home

   A simple chart of what happened just before, what the behaviour was, and what happened straight after. Patterns show up over a few weeks that nobody notices on the day.
3. 3

   Look for slow triggers and quick ones

   The build-up

   The Foundation calls poor sleep, hunger or feeling ill setting events, because they make a person less able to cope. A trigger is the thing that happens just before.
4. 4

   Watch a typical day

   Where it happens

   The professional may come and observe at home. The Foundation suggests inviting them on an ordinary day, without extra help or fewer demands, so they see what you see.
5. 5

   A written explanation of why

   The result

   NICE calls this a formulation: a written statement of what has led to the behaviour and what purpose it serves. The plan is built from it.

NICE asks for the assessment to be proportionate: a short one for behaviour that has started recently, and a fuller one where the behaviour is severe or has not responded to a first plan. The person stays at the centre of it, and the family should be fully involved and told how they will hear the outcome.

Some behaviour has more than one purpose, and for some people the reasons stay unclear even after a careful assessment. The Challenging Behaviour Foundation's view is that a plan based on a best guess is still worth having, because everyone then responds in the same way. Its information sheet Finding the reasons for challenging behaviour has examples of recording charts a family can use.

NICE guideline NG11 says the plan should improve the person's quality of life and remove the conditions likely to lead to the behaviour, such as noise or an unpredictable day. It should help the person learn another way to get the same result, such as a sign for "I want to stop", and say how to calm them at the first signs of distress, before it covers what to do if the behaviour cannot be prevented.

NICE also asks for the plan to fit the abilities and resources of the family and staff who will use it, so you can say that part of a plan will not work in your house and ask for it to be changed. A good plan can be read by a new support worker on their first morning.

The Challenging Behaviour Foundation has family information sheets on each stage, and BILD, the British Institute of Learning Disabilities, has information on positive behaviour support.

How to askSection titled How%20to%20ask

Ring or write to the GP and to the council's adult social care team and say, in these words, that your son or daughter has a learning disability and behaviour that challenges, and you are asking for a referral to the community learning disability team for a functional assessment and a behaviour support plan. Put the date on it, keep a copy, and describe two or three recent incidents with what happened before each one. If there is no Care Act assessment in place, ask for one at the same time. If your son or daughter is not yet 18, the transition at 18 explains how children's and adults' services hand over.

NICE guideline NG93, on how these services should be designed, says specialist behaviour support should be available in the community so that people can stay where they live, and that local waiting times should not exceed NHS standards. If you are told the wait is long, ask what support is available in the meantime and who to ring if things get worse.

RestrictionsSection titled Restrictions

Under section 6 of the Mental Capacity Act 2005, restraining someone who lacks capacity is only protected where the person doing it reasonably believes it is necessary to prevent harm to them, and the response is proportionate to how likely and how serious that harm is. Restraint in the Act includes restricting someone's movement whether they resist or not, so a locked kitchen door counts. NICE adds that every use should be documented, reviewed with the family, and matched by a programme to reduce it.

If the restrictions around someone at home add up to a deprivation of their liberty, that needs legal authorisation. The Social Care Institute for Excellence explains that outside care homes and hospitals this comes from the Court of Protection. Raise it with the social worker if you think it applies. Making decisions for a grown-up son or daughter covers capacity and best interests more widely.

Medication and STOMPSection titled Medication%20and%20STOMP

STOMP stands for stopping over-medication of people with a learning disability and autistic people. The NHS England programme aims for psychotropic medicines to be used only for the right reason, at the right dose and for as short a time as possible. NHS England says people with a learning disability are thought to be 15 times more likely than the general population to be prescribed an antipsychotic. You can ask for a medication review at any time, and the annual health check includes one. Reasonable adjustments, the dentist and STOMP has the questions to ask. Do not stop a medicine yourself: reducing it is done slowly, with the prescriber.

A carer's assessment looks at your own needs, separately from your son's or daughter's, including whether you can keep caring and whether you want to. Short breaks are often what makes the rest possible, and respite for parents of a disabled adult covers the forms a break can take. If the question is longer-term, when the parents can no longer cope sets out how to plan for it. The Challenging Behaviour Foundation is the charity specifically for families in this position, and it is worth contacting before things reach a crisis.

The dynamic support register and care and treatment reviewsSection titled The%20dynamic%20support%20register%20and%20care%20and%20treatment%20reviews

NHS England's dynamic support register and Care (Education) and Treatment Review policy aims to keep people out of hospital when the right support at home would do it. The register rates each person's risk so that help goes where it is needed first. A care and treatment review (a care, education and treatment review for under-18s) is an independent meeting with a chair, a clinical expert and an expert by experience, who look at whether the person's care is right. NHS England says anyone can ask for one, including family, and that saying no to one will not affect the care the person receives.

NICE guideline NG93 says a person should only be admitted to hospital if their needs cannot be met safely in the community and every other possibility has been considered and exhausted, and that if admission is being discussed, the person and their family should be part of that discussion.

PrimeCarers is an introductory service, not an agency, and it has no CQC registration. The family, or the person themselves, chooses the carer, interviews them first, and agrees the hours and routine directly with them, and they can keep working together for as long as it suits both of them. For someone who relies on a familiar face and a routine that does not change, that choice matters. You can search for carers near you, compare their rates and interview them before deciding.

There is no way to search for carers by positive behaviour support training or learning disability experience, and we do not check qualifications, training or references. What a carer says about their experience is their own account on their profile, so check it with them, using the questions to ask at interview. Before a carer appears in a search we check their identity and right to work, confirm an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. Separately, carers are insured while they work. How we vet every carer sets this out.

Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency. A council direct payment can be used to pay for support the person chooses, and direct payments and personal assistants and direct payments explain what a council will and will not accept. Any clinical task, such as rescue medication for seizures, is arranged and trained with the clinical team, as what carers are not allowed to do explains.