Identifying abuse or violence among patients with disability
People with disabilities may find it difficult to disclose abuse because of their situation of being dependent on their care givers or an inability to verbally communicate. Some patients with potentially limited intellectual capacity may not understand that what they are experiencing is abuse or what their rights are. GPs should consider the possibility of abuse and identify and appropriately care for patients to ensure their safety.
Some people with disabilities can display the same presentations of IPAV or sexual assault as seen in older people (Table 18.1) or people without disabilities.
|Table 18.1. Possible signs and symptoms of abuse and violence
- Afraid of one or many person/s
- Irritable or easily upset
- Worried or anxious for no obvious reason
- Depressed, apathetic or withdrawn
- Change in sleep patterns and/or eating habits
- Rigid posture and avoiding contact
- Avoiding eye contact or eyes darting continuously
- Contradictory statements not from mental confusion
- Reluctance to talk openly
- A history of physical abuse, accidents or injuries
- Injuries such as skin trauma, including bruising, skin tears, burns, welts, bed sores, ulcers or unexplained fractures and sprains
- Signs of restraint (eg at the wrists or waist)
- Unexplained behaviour changes suggesting under-medication or over-medication
- Unusual patterns of injury
- Bruising around the breasts or genital area
- Unexplained genital or urinary tract infections
- Damaged or bloody underclothing
- Unexplained vaginal bleeding
- Bruising on the inner thighs
- Difficulty in walking or sitting
- A history of psychological abuse
- Reluctance to talk, fear,anxiety, nervousness, apathy, resignation, withdrawal, avoidance of eye contact
- Rocking or huddling up
- Loss of interest in self or environment
- Insomnia/sleep deprivation
- Unusual behaviour or confusion not associated with illness
- History of fraudulent behaviour or stealing perpetrated on the patient
- Lack of money to purchase medication or food
- Lack of money to purchase personal items
- Defaulting on payment of rent
- A history of neglect
- Poor hygiene, bad odour, urinerash
- Malnourishment, weight loss, dehydration (dark urine, dry tongue, lax skin)
- Bed sores (sacrum, hips, heels, elbows)
- Being over-sedated or under-sedated
- Inappropriate or soiled clothing, overgrown nails, decaying teeth
- Broken or missing aids such as spectacles, dentures, hearing aids or walking frame
Patients with intellectual disability in particular may have limited or no verbal communication; however, they may present with changes in behaviour as a result of abuse (eg sudden hyper-alertness or withdrawal, challenging behaviour and/or mental illness). If a person with intellectual disability presents with very sudden onset of mental illness or challenging behaviour, abuse needs to be excluded, particularly sexual abuse.
Likewise, if a family member or service manager reports a marked behavioural change in a person with disability, this could be due to illness, but may be an indicator that something has happened to the person with disability. Another sign could be the refusal to attend a support service, participate in a particular activity or become agitated in the company of a particular person.
Patients with severe or profound intellectual disability may be even more vulnerable to abuse, either in a family environment, an accommodation service, or day service; abuse will only be recognised if it is observed by another person, change in behaviour or there are physical signs of abuse, including bruising or other visible evidence.
People with disabilities may experience a number of factors that contribute to abuse being perpetrated against them, or that can stop them speaking out or disclosing abuse. These include:
- lack of support to deal with violence and abuse, especially if they are being abused by those responsible for their care – they may fear an escalation of abuse if they speak up
- worry they would ‘not be believed’ or told it is their fault if they disclose the abuse – they may also believe the abuse is their fault
- poverty and dependence (economic, physical or social) on others, exclusion from the labour market
- inappropriate places of residence or service settings (eg living in a group home or other supported living situation with little privacy, or lack of access to crisis accommodation and support)
- service system issues, including difficulties in negotiating support systems, or lack of appropriate support to communicate effectively
- lack of participation and access to decision making and representation
- lack of access to the criminal justice system, and no understanding of their rights
- poor screening of support workers; drug and alcohol abuse by family members or support workers increases the risk of abuse
- vulnerability to perpetrators who will target them because of difficulty in making a successful conviction.
Compounding vulnerabilities are childhood abuse or adversity, previous experience of IPAV, victim or perpetrator alcohol or drug abuse, social isolation and lack of mobility.
Research examining the motivation for sexual offending self-described by autistic offenders found five main themes: social skills difficulties, lack of perspective, misunderstanding the seriousness of their behaviours, lack of appropriate relationships and a period of disequilibrium before committing the sexual offence.15 Other research suggests an individual with autism is at risk of sexually abusing if they have a history of being physically abused (10.8 times more likely) or a history of being sexually abused (8.6 times more likely).16 A study found lack of professional support before offending, which might be due to the later diagnosis of autism spectrum (mean age 13.13 years, compared with most children diagnosed between 3.17 to 10 years).17
Box 18.2 shows further vulnerabilities observed by parents in their adult children with intellectual disability.
Stress in caregivers, whether family, friends or paid carers, is associated with increased rates of depression, anxiety, substance abuse and anger, for both carers and the person receiving care.18 These problems can escalate over time, becoming risk factors for IPAV. This may lead to deterioration of self-care, including reductions in exercise, social isolation and poor sleep. Lack of self-care and increasing stress may result in maladaptive emotion-regulation strategies such as avoidance, rumination and alcohol abuse, with increased susceptibility to mental health problems.
Box 18.2. Vulnerabilities to abuse of women with intellectual disability
Parents of women with intellectual disability participating in a research focus group revealed how vulnerable their daughters with mild to moderate intellectual disability were, with sexual relationships particularly challenging.14 Observations included that their children:
- are lonely, disempowered and vulnerable to abuse, desperately craving intimate caring relationships like those seen on television
- lack sex knowledge (‘babies come out of the belly-button’), relationship skills and self-protection skills, which may increase their risk of abuse
- may not recognise their experience to be abusive
- lack employment, meaningful activities and close relationships
- may have unrecognised health problems, plus mental illness with challenging behaviours, for which they are prescribed psychotropics
- access unhealthy and possibly exploitative sexual activity in bars and with prostitutes and are exposed to pornography
- want intimate relationships, but have limited opportunities and difficulty negotiating the relationships
- have difficulty interpreting social cues and lack interpersonal skills and assertiveness.
Some noted that vulnerability to exploitation for young females with intellectual disability is exacerbated by new technologies, including the internet, mobile phones, chat rooms, online dating and the sex industry.
It was also reported that women who had been sexually abused were frightened of getting into trouble if reporting the abuse. Additionally, they lacked the verbal skills to describe it. When a girl is young, some parents use euphemisms rather than correct anatomical terms for sexual parts. This adds to difficulty reporting abuse as an adult, as parents may no longer be around to interpret the euphemisms.
The issues around appropriate sexuality education, support and protection from abuse are highly complex. Innovative programs such as Johnson and Frawley’s, Living Safer Sexual Lives program have demonstrated that people with intellectual disability are not only able to learn new skills, but can actively participate in developing programs. However, the process is slow and painstaking and effective learning and support requires ongoing funding and significant attitudinal change.1,19
Working with patients with intellectual disability
As with all patients, it is important to establish rapport and trust with your patients who have intellectual disability. Opportunities within regular consultations can be used to discuss their sexuality and relationships in a non-threatening way, which could allow you to ask more specific questions should the situation require it. This might be during an annual health assessment, during a Pap smear or breast examination for females or testicular examination for males. It is important that you have a second person within the room during these examinations.
If you suspect that a patient with intellectual disability is being abused or vulnerable to abuse, first consider the patient’s level of verbal communication in order to make an assessment (Box 18.3). If they are able to communicate independently, try to see the patient alone for some of the time – keep in mind that an accompanying person or carer may be the perpetrator of abuse; if the patient is living in an accommodation service, it is possible that the abuser is another client of the service or a member of staff.
While people with mild to moderate intellectual disability may have adequate communication skills, it can be difficult to obtain a consistent history from that person. Particular care should be taken not to make leading statements when taking a history. If there is a suspicion, early referral to an appropriately skilled counsellor is advised. Some individuals may have a history of what has been shown to be false accusations directed at carers. However, each situation should be judged on its merits with the safety of the individual the main priority.
Reduce the patient’s anxiety by asking non-threatening general questions first, selecting the ones that seem to be more appropriate for them. Ask permission to speak about sensitive issues, especially if sexual abuse is suspected.
- Initial example questions can include: ‘Where do you live?’, ‘What type of accommodation is it?’, ‘Do others live there too?’, ‘Do you need help from anyone else?’, ‘What do you do during the day?’, ‘Do you go out at night?’, ‘What things do you enjoy doing?’, ‘What don’t you like doing?’
- It may then be appropriate to ask about relationships, including: ‘Do you have friends?’, ‘Do you have family?’, ‘Do you have a partner?’
- Finally, you might ask: ‘Has anyone ever hurt you badly?’ From there, it may be appropriate to lead into asking questions relating to abuse, including IPAV.
While they can be vulnerable to abuse, people with mild to moderate intellectual disability are capable of having meaningful intimate relationships.
Box 18.3. Establishing clear communication with people with intellectual disability
People with intellectual disability can have varying levels of ability to communicate verbally, and an individual’s ability level may not be apparent on first meeting them. It is important to establish their level of communication and understanding to ensure clear communication throughout an appointment.
It is important to listen to the story presented by the carer, who is likely to have come with the patient. It is also important to see the patient on their own. Begin with short questions and use simple words as you listen to their account.
Tips for communication include:
- when greeting a patient, the words they use to respond will indicate their ability to communicate
- listen in a non-judgemental manner
- look at the patient when speaking
- speak slowly and clearly
- allow more time for the patient to respond to questions.
It may be useful to have a clinical record indicator (eg a note in electronic records, or blank coloured sticker on paper records) to indicate that a patient has an intellectual disability and that they should have a contact person to whom appointment reminders and other correspondence should be sent.
Some patients with intellectual disability become distressed and noisy if there are a number of people in the waiting room, and may leave the premises without waiting for the appointment. A note in the patient’s clinical record could be useful to indicate the patient could be allowed to wait in a quieter area, outside, or in the car.
In assessing whether sexual abuse has occurred, it is important to assess whether the person is able to understand what they are consenting to and whether their intellectual disability makes them vulnerable to coercion. This can be a particular issue if there is a marked difference in the intellectual capacity of the individuals involved. This may require review by an experienced counsellor. Where abuse is suspected and is affecting the quality of life of the individual, psychological counselling could be beneficial. This could be through a mental health plan or through the person’s NDIS plan. Sexual assault and family planning services may have specialist services for people with disabilities; this will vary depending on the state/territory.
Referral to or other involvement of a speech and language pathologist may be of use, particularly when the patient with disability has had an unexpected deterioration in communication.10
This may represent a non-threatening option for disclosure if the victim of abuse is accompanied by the abuser. The patient may also feel less intimidated disclosing abuse to a speech and language pathologist.
Patients with limited communication skills are more vulnerable to abuse and less likely to have this discovered. This abuse can be from a co-client, staff or even family. It is important to be aware that changes in behaviour or deterioration in mood could be a sign of abuse (eg if an individual becomes distressed in the presence of a particular person or refuses to travel in a bus or attend a particular activity). There can also be bruising and scratching or other physical signs of abuse. If a person with intellectual disability presents with very sudden onset of mental illness or challenging behaviour, abuse needs to be excluded, particularly sexual abuse.
Intimate partner abuse
Although there is literature on disability and IPAV, there are limited guidelines for managing IPAV experienced by a person with disability. Factors that need to be considered include:
- the comprehension ability of the abused person
- the insight of that person, and any partner
- whether the partner is providing personal care to the abused person, and how dependent the person is on them (eg for home or economic support).18
Adults with intellectual disability may require education to help their understanding of healthy relationships.20 This will only be relevant for those with mild intellectual disability, and perhaps some with moderate intellectual disability.
Some practical ways to help people with disability who are experiencing IPAV are:
- help the patient understand the effects of abuse on their health and welfare
- help the patient to find ways to be safe, especially if they are being abused in an accommodation service
- reassure the patient that they are not to blame
- reinforce that everyone has the right to be safe and live without abuse and violence
- help with financial needs to access treatment (eg National Disability Insurance Scheme [NDIS] funding could be used for a psychologist to help decide what to do, or patients may be eligible for Chronic Disease Management plans (eg Enhanced Primary Care plan or GP Mental Health Treatment Plan).
Allow time for patients to make their own decisions as to the next steps. Offering another appointment later on can give them time to think through decisions, providing they are not immediately at risk.
GPs and other practice staff should make themselves aware of services in the community that can assist people with disabilities in this situation, such as counselling, advocacy, shelters, police and legal services.
A list of state and territory disability rights services can be found here.
Working with the National Disability Insurance Scheme
Since 2013, disability funding has been distributed through the NDIS. The NDIS aims to individualise funding and allow people more choice of service provider and use of available funds.
GPs are ideally situated to support patients with disabilities and their carers in applying for NDIS support and reviewing their plans, by:
- helping with the application
- drafting a letter of support about a particular issue faced by the patient
- referring to appropriate specialists or services to investigate or identify a problem
- identifying how a particular health issue or vulnerability might impact need for support.
It is useful to keep a copy of patients’ NDIS plans on file – this requires permission from the patient or their medical treatment decision maker.