Working with violence and abuse in people with disabilities

Background and prevalence

People with disabilities are a vulnerable group within our society and among our patients. They are at increased risk for neglect and for multiple forms of abuse, including verbal, psychological, physical and sexual abuse.^2,3

In this chapter we will look at the risk of abuse and violence happening particularly with patients with more marked physical and intellectual disabilities.

The number of people with disability in Australia increased from 4.3 million in 2015 to 4.4 million in 2018, and the number of people with disability aged over 65 years increased from 1.8 million in 2015 to 1.9 million in 2018. In 2018, 5.7% of all Australians had a profound or severe disability, and 23.2% of all people with disability reported a mental or behavioural disorder as their main condition.⁵

Evidence suggests that up to 25% of children with disability will experience abuse and violence within their lifetime, and children with disability are three to four times more likely to be victims/survivors of violence than their peers without disability.⁶ Additionally, the prevalence of sexual abuse may be higher in children with mental or intellectual disability than children with other impairments.⁶ Refer also to Chapter 9: Child abuse and neglect.

Likewise, adults with disability appear to be at increased risk of interpersonal violence, for reasons including exclusion from education and employment, the need for personal assistance with daily living, reduced physical and emotional defences, communication barriers that hamper the reporting of violence, societal stigma and discrimination.³

In particular, people with intellectual disability (Box 18.1) are at higher risk of violence and sexual assault.⁷ Adults with intellectual impairment or mental illness had the highest population rates of violence compared both with individuals with other disability types, and with adults in the general population.³ Prevalence estimates of any recent violence – including physical, sexual or intimate partner abuse/violence (IPAV) – were highest in adults with mental illness, and lowest in those with non-specific impairments. The pooled prevalence of violence in people with mental illness was quoted as 21.4%, in intellectual disability 9.9%, and sexual abuse 5.5%.³ Perpetrators will target this population as they are more vulnerable to manipulation and their cognitive disability makes it harder to bring about a conviction.

The United Nations Committee on the Rights of Persons with Disabilities reported in 2015 that current anti-discrimination laws in Australia fail to adequately recognise and address discrimination against people with disabilities, including its cumulative effects, because of the requirement that each occurrence is dealt with in isolation.⁸

Violence against women with disabilities

Women with disability experience a range of impairments that impact on their lives in various ways, encompassing medical conditions and/or sensory, physical, cognitive and psychosocial impairments, singly or in combination.⁸ In 2015, the United Nations Committee on the Rights of Persons with Disabilities expressed concern that gender equality national policies and plans often lacked a disability perspective, and gender is not mainstreamed in disability policies. A lack of awareness of the rights of children with disability was also reported.⁸

Furthermore, violence against women with disabilities continues to be downplayed, by being described as abuse, neglect, service incidents, administrative infringements or just a workplace issue to be addressed, rather than being described as violence or crimes.⁹

IPAV is considered a major global health issue, affecting women in particular. However, the World Health Organization’s (WHO) 2013 guidelines Responding to intimate partner violence and sexual violence against women address only patients without a disability,² and do not always apply to women with disability.

An estimated 54–80% of women with disabilities have experienced IPAV, which can seriously impact their physical, mental, sexual and reproductive health.¹⁰ A study found a prevalence of IPAV between 26–90% in women with disability, at a disproportionate rate compared with men with disabilities.³

The role of GPs

GPs and other health practitioners have a duty of care to patients with disabilities, as to all patients. However, research has shown that despite having greater health needs, people with disabilities have less access to appropriate healthcare, often due to physical access problems, communication difficulty or lack of awareness of the need for care on the part of patients and their carers.¹³ People with intellectual disability in particular have specific needs, but may experience difficulty addressing these needs.^1,14

Good general practice care therefore has the potential to greatly improve the health and welfare of people with disability, but GPs need to be mindful of the possibility of abuse. All practice staff need to have disability awareness training, including receptionists, who are the first point of contact with a patient with intellectual disability.

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.

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.

Risk factors

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.

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.

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.

Kayla, a 22-year-old woman with mild intellectual disability and type 1 diabetes, has been your patient for two years. She is usually likeable, and her speech can be difficult to understand, particularly when she is anxious. Kayla lives with her elderly parents and younger sister, Sarah.

When Kayla’s father recently needed major surgery, her parents arranged for Kayla to go into a respite house, which she had been to before.

Kayla comes to see you for a regular check-up, accompanied by Sarah. During the appointment, Sarah says that Kayla has not been her usual bubbly self, being irritable and argumentative. This has adversely affected the health of their parents, to the extent that Sarah has rented a unit and moved out with Kayla.

Sarah is worried about her sister’s diabetes management, saying that Kayla has been irregularly taking her blood glucose levels (BGL). When you take a BGL, her reading is 18.5 mmol/L. As Kayla is hyperglycaemic, you arrange for her to be taken immediately to a nearby emergency department.

Kayla’s insulin dose is increased in the hospital, and she is sent home with orders to return if her BGL goes up again. A few days later, Kayla again develops hyperglycaemia, so she returns to the emergency department and is admitted. The hospital staff run investigations for sources of infection, but find none and discharge Kayla after several days.

A few days later, a nurse notices that Kayla’s hospital notes mention that Kayla mentioned someone coming ‘into my bedroom with his pants off’ during her stay at the respite house. Kayla’s urine is checked for sexually transmitted infections (STIs), and returns positive results for chlamydia and gonorrhoea. Kayla is treated for those conditions and referred to a social worker, who tells her to carry condoms in her handbag in future.

When the hospital nurse informs you of this, you contact Kayla to arrange to see her immediately.

Kayla comes in with Sarah, but clearly feels embarrassed about the STIs. You reassure her that it is not her fault, and that she has done nothing wrong. You offer to tell Kayla’s parents about the abuse on her behalf, or with her, but Sarah says that she would prefer to tell them.

Sarah and their mother accompany Kayla to the police station, where she makes her report.

On Kayla’s next visit, Sarah tells you that she and Kayla have moved back into the family home, and Kayla is partially back to her bubbly self, managing her diabetes well again. You discuss the possibility of counselling, including support and advocacy for Kayla as she goes through the legal processes of making her police report. They agree that it could be helpful, so you make a referral to a local sexual assault support service that has counsellors trained in supporting people with disability.

Kayla continues to attend her regular appointments and seems back to her usual self. Her diabetes remains well-controlled.

Key points

The person who abused Kayla could have been a disability support worker or another client staying in the respite house. Therefore, the accommodation support organisation will need to undergo its own investigation. If a co-resident potentially has an STI this needs to be investigated. All residents should be reviewed by their GP. If the abuser is identified as a co-resident, the service should investigate how he contracted the STIs, including whether he was himself abused. If the abuser is a paid carer, then other people in the service are at risk. While it is not your role as a GP to carry out this investigation, you should ensure that it takes place.

It is difficult to know how much Kayla understood about the significance of the abuse, as her intellectual disability may have protected her from full realisation. However, a person with mild intellectual disability is likely to be able to identify the person who abused them. In the past, getting consistent evidence that would stand up in court might have been difficult, but current procedures allow evidence in-camera. Genomic sequencing could identify the gonorrhoea and STIs and be used as evidence, if these were identified in the perpetrator.

Kayla will need regular Pap smears. Kayla is still capable of having a relationship, and should be given sex education (with care taken not to trigger memories of the abuse) and contraception, if she wants to be sexually active.

Josh is a 10-year-old boy who has autism and intellectual disability. He is not toilet-trained and is currently non-verbal. He is brought to see you by his mother, Jasmine, at the urging of his special school staff. Josh’s father, Cameron, is an interstate truck driver who is away alternate weeks.

You ask a number of questions to clarify the situation.

• ‘What kind of behaviour are you or the school concerned about?’
• ‘How long have they been occurring?’
• ‘Do they occur all the time, or now and then?’
• ‘If now and then, when do they tend to occur?’

Jasmine says that the behaviours are worse when Cameron is home. When you ask if she has noticed any other changes in Josh, she tells you that Josh is now a very restless sleeper and has nightmares all the time. He is also getting a lot of bruises, and she is worried he might have something wrong with his blood.

On examination you note the following:

• left ear lobe swollen and painful
• adult-sized bruises on upper arms
• adult-sized fingerprints on his lower abdomen, of varying ages, which indicated he had been grabbed from behind by an adult
• reddening around Josh’s anus.

You explain to Jasmine that it is possible Josh is being abused by an adult. This means that you have to report it to the Child Abuse Report Line. Jasmine agrees.

Following the report, Cameron is arrested and charged with the sexual and physical abuse of Josh. He is eventually sentenced to prison.

When Josh and his mother are safe, you consider how to support them, which is a challenge because of Josh’s disability and the potential cost of therapy. You have heard about victim support and ring to see if Josh would qualify and if they could pay for this service. You find that Jasmine also qualifies for a support service and there is funding available to help them in other ways (Box 18.4). The other option is to try to access services through funding from NDIS.

A therapist is found through Autism Spectrum Australia<<link to https://www.autismspectrum.org.au/>>. Josh starts to see a therapist who has training in working with children with his disabilities.

You arrange to see Jasmine without Josh, to see if she will accept a referral to help her cope with the after-effects of the domestic violence and Josh’s child abuse. Her financial situation needs to be explored, as well as her current living arrangements. She declines a therapist referral for now, but commits to seeing you regularly.

Six months later, Josh is looking happier, has put weight on, is taller, and has begun to talk again. Josh’s mother is also looking more relaxed, and reveals that she had been physically abused by her partner. Again, the option of a referral is discussed but declined because she does not feel ready to go to an unknown person. You continue to see her regularly to build up her confidence to accept a referral to a domestic violence service or a psychologist with experience working with people exposed to domestic violence.

Inability to communicate is not a barrier to perpetrators being identified, charged with sexual abuse and gaoled.

• Developmental disability − refer to the chapter on ‘Abuse, trauma and supporting people with developmental disabilities’. Therapeutic Guidelines, 2021. 
• Rape and Domestic Violence Services Australia – information for people with disabilities and their carers and families.