Guidance

Substance misuse in people with learning disabilities: reasonable adjustments guidance

Published 8 May 2016

Introduction

This guidance summarises what the research tells us about the particular problems faced by people with learning disabilities who have substance misuse problems. There is information about which approaches work best and resources for those supporting them.

The prevalence of substance misuse in people with learning disabilities

Some people with learning disabilities misuse alcohol or illicit drugs and some misuse prescribed medications. Various studies have looked at the extent of substance misuse in people with learning disabilities. These are likely to underestimate the problem, as some used self-report measures and others only included people known to learning disability services. It’s important to note that little is known about the health of the ‘hidden majority’ of adults with learning disabilities who don’t use learning disability services. It’s this group of people with more mild learning disabilities who are most likely to misuse alcohol or drugs.

Overall, the evidence indicates that people with learning disabilities are less likely to misuse substances than the general population. However, some people believe that when people with learning disabilities do drink alcohol, there’s an increased risk that they will develop a problem with it.

As increasing numbers of people with learning disabilities are living more independently in local communities they’re more likely to have access to alcohol and other drugs and, therefore, there’s a need for appropriate services to support those who misuse substances. It can be difficult to recognise that someone has mild learning disabilities, but they may still need a different approach to their treatment and support.

Research suggests that children with learning disabilities are more likely to experiment at an early age with potentially harmful levels of alcohol. Public health work aimed at reducing harmful drinking in children must recognise that those with learning disabilities are a high-risk group. Interventions should be targeted appropriately.

Why people with learning disabilities misuse substances

Research shows that some groups of people with learning disabilities are more likely to misuse substances than others. For example, people with profound and multiple learning disabilities are simply unlikely to have the opportunity.

People with learning disabilities have an increased risk of substance misuse if they:

• have borderline to mild learning disabilities
• are young and male
• have mental health problems

Interviews with people with learning disabilities who were misusing alcohol or drugs showed that the main reasons for this could be described as ‘self-medicating against life’s negative experiences’.

These included reasons related to:

• psychological trauma, such as bereavement or abuse
• social distance from their community such as isolation and loneliness

Other risk factors for substance misuse include:

• living independently
• boredom or lack of meaningful occupation
• desire to be socially included/loneliness
• limited social skills or low self-esteem
• lack of family contact
• impulsivity
• negative life events, for example, neglect, abuse and bereavement
• unemployment
• poverty

Effects of substance misuse

In the general population, alcohol is the leading risk factor for preventable death in those aged 15 to 49, and the rates of people dying from liver disease are increasing. Alcohol misuse is also associated with other physical illnesses, such as stroke, and is linked to increased violence. For these reasons, one of Public Health England’s (PHE) top 7 health priorities is reducing harmful drinking and alcohol-related hospital admissions.

Substance misuse has negative and social effects on people with learning disabilities. These have been shown to include:

• deterioration in physical and mental health
• alienation or social difficulties
• cognitive deficits
• aggression or mood changes
• verbal and physical aggression
• risk-taking behaviour including suicide
• increased epileptic seizures
• inpatient admissions
• greater risk of offending behaviour – people in forensic learning disability services
• often have problems with substance misuse
• being vulnerable to exploitation
• financial impact, including potential loss of housing
• effects of stopping prescribed medication to be able to drink alcohol

Services available for substance misuse

Although only a small proportion of people with learning disabilities are known to have substance misuse problems, they are a doubly disadvantaged group and currently, services aren’t meeting their needs.

In one study the main places where people reported getting help were:

• learning disability services – these provided a positive educational role and acted as a liaison with other services
• mainstream addiction services – the people that were positive about these services had received support on a one-to-one basis, rather than attending group sessions
• primary care services – GPs tended to give basic advice and information leaflets and antidepressants were often prescribed to address mental health issues

A few studies have looked at the effectiveness of targeted interventions for substance misuse in people with learning disabilities.

Interventions have included:

• medication
• support groups
• behavioural programmes

Evaluation is difficult due to the lack of any standard measures for this group therefore there’s a need for more evidence-based treatments.

Barriers to substance misuse treatment

Research shows that neither learning disability services nor substance misuse services have all the skills and training resources to support people with learning disabilities who have substance misuse problems.

Staff in drug and alcohol services do not have appropriate training for working with people with learning disabilities and staff working in learning disability services do not have knowledge of assessment, treatment and management of substance problems. Due to a lack of integrated service provision, people with learning disabilities may fall between the cracks of specialist learning disability and mainstream addiction services.

barriers include:

• failure of drug and alcohol services to recognise someone has a learning disability
• failure of learning disability services to detect drug and alcohol problems in people they support and to refer them to mainstream services
• some drug and alcohol services specifically exclude people with learning disabilities
• lack of integrated services and no clear pathways or protocols in place regarding inter-agency working
• lack of recognition in mainstream alcohol and drug policies
• health promotion messages are too complex

In general, mainstream drug and alcohol services fail to adapt the way they work to make services accessible to people with learning disabilities.

Issues that may need to be considered are:

• people with learning disabilities may not benefit from group work in the same way as people in the general population
• apparent lack of co-operation may be due to a lack of understanding, rather than a lack of motivation to engage in treatment
• adapting the way in which they engage – alcohol and drug professionals reported using the same assessments they use for the general population
• simplifying the information that is provided
• people with learning disabilities may be dependent upon carers and paid staff to make the positive life changes emphasised in mainstream drug and alcohol services

What do we know about what works

There is a lack of evidence-based guidance about effective treatment for this group. However, some approaches and strategies may be helpful such as:

• addiction services and learning disability teams integrating their services together to provide a link between these services
• a personalised approach that tailors interventions to someone’s individual needs
• interventions and information need to meet the particular communication and learning needs of individuals
• people with learning disabilities may benefit from a one-to-one approach rather than group work
• both substance misuse services and learning disability services should be screening for misuse problems or learning disabilities at initial assessments
• training for mainstream addiction staff in how to work with people with learning disabilities and how to modify their assessment and treatment approaches
• training for learning disabilities professionals around substance misuse
• widening the person’s social support networks
• greater family involvement in treatment
• appropriate training and resources for support workers
• access to support services including bereavement and sexual abuse that can help people to address the reasons behind their substance misuse
• techniques such as motivational interviewing

Capacity and consent

The Mental Capacity Act sets out the law regarding capacity and consent. It provides guidance about the correct process in cases where there are concerns that an individual may not have the capacity to take an informed decision. One of the main principles of the Act is that a person is not to be treated as unable to make a decision merely because he/she makes what is considered to be an unwise decision.

Professionals supporting someone with learning disabilities and drug or alcohol problems may have difficulties making decisions about capacity in some situations where people apparently want to make unwise choices. The Code of Practice guides anyone who is working with adults who may lack the capacity to make particular decisions.

Safeguarding

People with mild to moderate learning disabilities are vulnerable to exploitation. Drug and alcohol teams are likely to come across some people with learning disabilities who are being coerced into commercial sex or working in the drug trade. Concerns should be raised with local authority safeguarding teams if they or others are thought to be at risk of harm or causing harm. There may be times when it is appropriate to go directly to the police. The local authority safeguarding team will decide whether to proceed with a full enquiry. If the concern does not meet criteria for an enquiry, there is still a duty to give advice or signpost to other services where appropriate.

Ideally, informed consent should be obtained before a referral is made. If the individual refuses to consent to information being disclosed, a decision needs to be taken as to whether information sharing is justified. This is necessary in some cases, for example, where others are at risk of serious harm. Drug and alcohol teams should have their protocol for such situations.

SCIE has published guidance for frontline practitioners and managers who work with adults who have care and support needs and who may be at risk of abuse or neglect. The guidance identifies some challenging safeguarding dilemmas and aims to make clear how these should be handled within the new legal framework of the Care Act. It includes information about what to do when a person who has full mental capacity acts in a way that is a risk to their safety or well-being.

Further resources

National Institute for Health and Care Excellence (NICE) guidance on offering best practice advice in:

• providing care to adults and young people with alcohol-related physical complications.
• providing care to adults and young people with alcohol dependence or who are harmful drinkers
• young people who misuse drugs
• community-based interventions to reduce substance misuse among vulnerable and disadvantaged children and young people

Resources about substance misuse for professionals/family members and carers:

• Drinkaware provides evidence based information, advice and practical resources which raise awareness of alcohol and its harms; the website has free alcohol education resources which are aimed at 9 to 14 year olds which include lesson plans and videos

• Working with Substance Use has online resources for health and social care professionals working with people who are misusing substances and includes a case study about a young man with learning disabilities

Accessible resources:

• Alcohol: information for service users has information about what alcohol does to your body and the amount of alcohol that is in different drinks
• Coming for a drink? has information about what alcohol does to your body. There is also advice about drinking sensibly. There is information about how to judge if you are dependent on alcohol and what you can do about this.
• What happens when you drink too much
• Consequences of drinking alcohol is an easy-read booklet about the short and long-term effects of drinking alcohol with top tips for drinking less alcohol
• Consequences of using cannabis is an easy-read booklet about the short and long-term effects of using cannabis with advice on giving up or cutting down
• My Recovery Action Plan (My-RAP) is a document that uses easy-read and pictures to create a plan for people who wish to address drug or alcohol issues
• Alcohol diary prompt is a picture-led resource to use with people with learning disabilities or communication difficulties when discussing alcohol and creating an alcohol diary
• Guide to common drugs is an easy-read leaflet about illegal and legal drugs with information about what each looks like, how they are usually taken, how they might make you feel and the dangers
• Common drugs poster has photographs of common substances and details of the side effects which are depicted with graphics

Smartphone apps related to monitoring alcohol intake:

• Drinks Tracker helps someone keep track of how much they are drinking over the week with information about how much someone is spending on alcohol and practical tips on cutting down
• Drinkaware helps someone to track alcohol consumption and spend over time; it can also calculate units and calories and be used to set goals to help moderate drinking
• DrinkControl tracks and converts alcohol intake quantities, such as glasses, bottles or cans into the standard units of alcohol, and lets someone know when they are going over the limits set by moderate drinking guidelines and how much they have spent on drinks; it can provide statistics and charts as well as a personal infographic on what has been drunk