What I know about women living with disabilities from my experience working in a public maternity hospital – The statistics!

It is estimated that about one billion people globally (15% of the world’s population) live with a disability. The 2015 Australian Bureau of statistics (ABS ) report estimated that there are 4.3 million people living with disability in Australia. The survey indicated that just under 18.6% of all females in Australia live with a disability. Emergent studies indicate that women living with disabilities have an increased chance of experiencing poor health generally and those who are pregnant are beset with a high incidence of pregnancy complications and adverse birth outcomes.

Historically there has been little research into this area and planning effective policy and services is affected by limited availability of supporting empirical data and information.

Women with disabilities are more likely to delay accessing antenatal care until after the first trimester. They also tend to have lower antenatal clinic attendances and less likely to report to the essential postpartum check ups in neonatal period ( 6 weeks post delivery is the neonatal period). This is thought to be due to negative experiences and social barriers. Women with disabilities often report that their healthcare providers are not able to manage their pregnancies effectively, possess negative stereotypes about their sexuality, disapprove of their pregnancy, and question their ability to parent.

Global studies indicate women with disabilities have a greater risk of experiencing stressful life events during the course of pregnancy such as life stressors, domestic violence and lack of social supports postnatal. Such stressors can impact on maternal wellbeing throughout pregnancy and subsequently birth outcomes.

 

This link below discusses 20 things to consider when caring for pregnant women living with a disability.

Considerations for Health Professionals Caring for Pregnant Women Living with a Disability.

 

Priority should be given to maximizing this populations health before and throughout the pregnancy by a public health approach to addressing their needs. To do this a sound understanding is required of who these women are and the clinical and social circumstances surrounding their pregnancies. The National Perinatal Data Collection (NPDC) of the Australian Institute of Health and Welfare (AIHW)  does not record any data around women living with disabilities accessing maternity services for the Perinatal Statistics Report therefore making effective policy difficult to address.

Although not formally collected by the ABS or the Perinatal statistics, this is knowledge I have gained from my experience over 16 years of working in a city of 5 million people, being 19.05% of the Australian population in a central public tertiary hospital where I have specialised in maternity care for women living with disabilities.

AGE

The average age of women living with a disability receiving maternity care is 30.83 years and the average for primigravida’s (first time mum) was 29.75 years which is compatible to the Australian average population.  The  perinatal statistics report  (2014) indicates that the average maternal age of women in Australia is 30.2 years and average age of a primigravida is 28.7.  The age group 20-29 years, women with disabilities present in their early 20’s more so than the general population which is late 20’s .

TYPE OF DISABILITY

Definitions of disability are widely debated but important because they directly affect the lives of people with disabiities by influencing eligibility criteria for programs and benefits, policies and legislation. I employ the American Association of Intellectual Disability (AAID) definition,

Intellectual Disability

  • significant sub average intellectual functioning (IQ <70).  A ‘borderline’ average intelligence between71-85,  IQ is significant at <60 and considered incapable of parenting.
  • difficulties with activities of daily living (ADL’s) in at least 2 of the following skill areas which manifest before the age of 18. Communication, self-care, home living, community use, self direction, health and safety, leisure and work, functional academia.

A LEARNING difficulty is defined where there may be not any formal diagnosis but where a professional working with a person has identified or the person themselves identify as having a ‘borderline’ intellectual disability or learning difficulty, citing examples of difficulty with ADL’s as mentioned above.

Physical Disability

  • includes those with an Acquired Brain Injury (ABI) or physical disability that is or is likely to be permanent.

Sensory Disability

  • Those with vision or sight impairments that is or likely to be permanent.

My experience has been over the past 16 years of type of disability women live with accessing maternity care is, 11% sensory,22.4% have had physical disabilities, and 66.6% cognitive impairments. Most pregnant women do not have a formal report of a diagnosis of an intellectual disability that can be accessed. The women have often had testing done at school age, can’t recall where it was done, by who, nor know where the official document is. As this line is blurred in a practical and clinical sense I often use the umbrella term of cognitive impairment, unless a formal report is sighted. In some cases a current neuropsychology report may be request by authorities to help assist planning around capacity and support required. These are expensive approximately $800 and are not offered in a public hospital. It needs to be funded by the women herself or by a community agency. Capacity is usually determined by assessment during the pregnancy regard an extensive psychosocial report by an social worker who should be experienced in the disability field where strengths difficulties and risk factors are highlighted, by patients presentation and engagement with the supports in place and professionals, that the patient displays understanding of parentcraft information and what is a safe environment for a child, displays appropriate protective behaviour, is able to grasp parentcraft skills, shows ability to self care and plan and motivated to do what is required for a healthy pregnancy in preparation for parenting. Can acquire appropriate equipment for parentcraft and engaged with services that my be able to assist. A comprehensive approach is required. The women may require formal supports to help her achieve what is required however her willingness to try do what is needed is important.

ABORIGINAL AND TORRES STRAIT ISLANDER STATUS

Amongst a sample of 30 women in March 2016 and March 2107 17% (5) were identified as Aboriginal or Torres Strait Islander.

Though a small part of the general population (only 3%), indigenous people bear a disproportionately large part of the disease burden as about 67% of Aboriginal people live with at least 1 chronic long-term health condition. The AIHW reported that in 2013 Indigenous Australians were two times more likely to have a disability because of exposure to various predisposing factors including higher prevalence of chronic diseases, LBW, accidents, violence and substance abuse. 36% of Aboriginal or Torres Straight Islander population live with some form of disability and 6.4% live with a severe or profound disability ( double the rates among non-indigenous Australians).

PLACE OF BIRTH

Most women I have cared for have been born in Australia, a small percentage born overseas. In an audit of 30 women in March 2016-March 2017 60% (18) were born in Australia and 40% (12) were born overseas. As of June 2016, 28.5% (6.9 million people) of Australia’s resident population were born overseas. Of this cohort of 30 women 23% of patients required an interpreter. Of the 7 of the women requiring interpreters 2 used AUSLAN interpreters and the other 5 required language interpreters.

EDUCATION

People with physical disabilities have higher education , higher incomes and most are employed compared to people living with sensory and intellectual disabilities.  Over 50% of women audited in March 2016 – March 2017 were unemployed and only 33% were employed. However 13% of the audit group had no employment or occupation recorded. Among the employed population, women with physical disabilities accounted for 90%. 57% (17) recurved government benefits for financial and/or housing. A 2015 survey reports 2.4 million Australians living with a disability require a continuous combination of formal and informal assistance. A 2013 study by Professor Anne Kavanagh demonstrated that as severity of disability increases there was a proportional decrease in year 12 completion. Education is a key determinant of economic performance that also affects long-term socioeconomic status. (SES).

Most people I have cared for have been unemployed. Australia’s disability unemployment rate was 46.6% in 2015, showing that people with disabilities have a 30% lower economic/labour force participation rate than people without a disability. Post graduation people with disabilities take 56.2% longer to gain employment than their counterparts. There has been a trend of increased participation of individuals with disabilities in the labour market  however this trend has been evident among individuals with physical and low to moderate disabilities.

in 2015 , a survey reports that 2.4 million Australians living with a disability require a continuous combination of formal and informal assistance. Assistance needed ranged from healthcare, self-care and mobility to property maintenance and 42% of all working age individuals living with a disability  reported that their main source of income was from government allowances and pensions.

BIRTH OUTCOMES

Most of the women I have cared for deliver at term (37-42 weeks gestation). The Swedish National Register study reported that 12.2% women with an intellectual disability (ID) had a gestation length of less that 37 full weeks (pre-term delivery), compared to a rate of 6.1% found amongst women without ID. Another study in Australia by the University of Sydney reports the rates to be as high as 28%. It is suggested women with disabilities suffer from multi-morbidities that predispose them to pregnancy complications like pre eclampsia, gestational diabetes mellitus.  A study published titled Newborns of Mothers with Intellectual Disability Have a Higher Risk Of Perinatal Death and Being Small for Gestational Age, by Berit Hoglund, Peter Lindgren and Margaret Larsson, Department of Women’s and Children’s Health, Uppsala, Sweden 2012 concluded, newborns of mothers with intellectual disability are a risk group. They have higher incidence of small for gestational age (SGA) and of stillbirth and perinatal death compared to newborns of mothers without intellectual disabilities. Unborn and newborn children of mothers with ID should be considered a risk group and their mothers may need better individual based care and support. in understanding and interpreting signs and symptoms of pregnancy complications such as premature contractions.

Women who have moderate cognitive impairments may require serial growth and well-being scans if they have difficulty with recognising fetal movement due to their lack of ability with abstract thinking. They may understand a baby is growing in their tummy but not be able to visualise that, thus understand the concept of fetal movement or lack of.

My experience has been the cesarean section rate for women with disabilities is approximately 60% of deliveries as opposed to 33% in the general population between 2013-2015.

Of the women with disabilities I cared for in 2013-2015 most cesareans were planned. Of all deliveries 86.53% had some form of intervention either induction of labour, instrumental delivery or resulted in a cesarean section. 50% of spontaneous labours resulted in a vaginal delivery. Of a 2016-2017 audit showed 17% of patients had premature deliveries (<37 weeks gestation) however a significant proportion 83% delivered at full term.

These staggering cesarean rate statistics highlight the complexity of pregnancies of women with disabilities. The complications refer to health problems that endanger the mother and/or fetus. Fetal indications for cesarean can include fetal distress, and abnormalities where the fetus would be compromised during a vaginal delivery . Others reasons for a high cesarean rate can be due to maternal and co morbidity complications. Some examples I have experienced are such as, gestational hypertension – eclampsia), placenta previa, cerebral vascular events such as sub-arachnoid haemorrhage, premature rupture of membranes, and seizure, motor vehicle accidents, hypovolaemic shock, appendicitis, thryroidtoxicosis, spina bifida, multiple sclerosis, paraplegia, spastic quadriplegia, myotonic dystrophy, achondroplasia, adenocarcinoma, significant cognitive impairment and cesarean section chosen as best choice for the mother, development of HELLP syndrome in pregnancy,  unstable epilepsy and maternal Di George syndrome and and genital herpes where the safest mode of delivery for mother or baby has been via cesarean section.

Given that various research has documented women with disabilities are in the risk group for pregnancy complications ( babies small for gestational age, delivering prematurely, higher incidences of pre eclampsia and gestational diabetes and general poor health often associatied with low SES and maternal conditions requiring delivery but cesarean where ICU admission may be required) these women’s pregnancies are best managed in hospitals that have the infrastructure to offer appropriate care.

MULTIDISCIPLINARY APPROACH

Nearly all women with disabilities require a multidisciplinary approach. The interdisciplinary team involves social workers, midwives, psychiatrists, gynaecologists, pharmacist, anaethetists, a fetal management unit, dietitians, psychotherapists and a in some instances other specialists, depending on the case.

Several studies have highlighted the importance of multidisciplinary involvement in the antenatal and perinatal care of women living with disability. Clinicians  involved in caring for this population have to address complex health concerns. Therefore collaborations with other healthcare practitioners, perhaps representing multiple specialties and disciplines such as medical, nursing and diagnostic caring for these women is strongly advocated. For example consideration must be made for how medications prescribed to control existing comorbidities and conditions might affect fetal might affect fetal development and decisions regarding medication change and or dosing. An example is women with multiple sclerosis most often cease their medications for treatment during pregnancy and recommence usually around 6-8 weeks postpartum.

Well coordinated and effective communication across all clinical disciplines ensures that all practitioners are thoroughly informed about the status of women’s various health conditions, especially as delivery approaches.

CHILD PROTECTION INVOLVEMENT.

Like all governments, the Australian state and territory governments have the statutory responsibility to protect children from child abuse and neglect. Even if the neglect is unintentional. The formal removal of children from the care of their parents in Australia occurs mainly through the operation of the child protection system of each Australian state. Under child protection legislation, the State is authorised to intervene in the life of the family to protect the child from harm. Between 2014-2015 there were 320,169 notifications made to child protection services in Australia.

While there are no concrete statistics on the number of parents with cognitive, sensory, or physical disability involved in the child protection system in Victoria, an unofficial report suggests that the rates are similar to those of other western countries. The 2012 American Report “Rocking the Cradle”, estimates that between 40%-80% of the children of parents with intellectual or psychiatric conditions are removed from their parents care. In Australia every effort is made to keep children within the family. My experience between June 2013 – July 2015 of a cohort of 29 women with a cognitive impairment, 58.62% (17), had a notification to child protection and of those 29.41% (5) had children removed from the care of the biological mother within the neonatal period temporarily or permanently.

In real figures of babies born between June 2013 and July 2015 to 29 mothers with varying cognitive impairments only 1 was place in foster care. The other 4 that resulted in removal from the care of the mother resulted in guardianship, temporarily or permanently, being given to a relative or the biological father. The majority of women who had a cognitive impairment 82.76% (24) still had their babies in their care at the end of the neonatal period which supports the theory that IQ is not a predictor of parenting capacity.

I have not been able to obtain figures relative to the general population in notifications to child protection and removal in the neonatal period as the Children’s Court of Victoria only keep records on children in general removed from the mothers care in the first year of life. These records also do not state if the parent had a disability. Therefore my figures are as a result of my knowledge and not necessarily nationwide but the only data that’s ever been collected that I’m aware of in Australia on mothers with a cognitive disability and parenting capacity in the baby’s first 6 weeks of life when newborns are at their most vulnerable.

Notifications to child protection can be done by anyone who knows of the women. This could be a member of the community, family or support services and other professionals and are anonymous to the women concerned. All notifications must be investigated by the child protection service where a decision is made to close the case or continue working voluntarily or by court orders. Child protection can work voluntarily or involuntarily for 3 months and then child protection must present the case to the Children’s Court of Victoria to obtain a legal court order to continue child protection involvement. If children are to be removed from the family child protection must apply to the Children’s court under all circumstances for an Interim Accomodation Order for authority by law to do so, making the Department of Health and Human Services Child Protection the temporary legal guardian of the child.

Due to the obstetric and psychosocial complexities for many women living with disabilities who are pregnant, having experienced, knowledgable, dedicated staff that adopt a supportive, communicative, multidisciplinary and well-coordinated approach is recommended most effective quality care.

For women living with disabilities that are pregnant or planning a pregnancy I recommend seeking out a service that has the infrastructure, knowledge and programs tailored to care for the medical, obstetric, and social needs associated with disabiltiy.

A recommendation would be for the AIHW to include figures in the perinatal statistics report on maternity services women with disabilities are accessing and birth outcomes of these women to assist better policy and services. Also that the Department of Health and Human Services Child Protection (DHHSCP) to record if mothers have a disability and outcomes of their involvement with these families and the Children’s Court records to also include disability data.

( disclaimer: my figures are unofficial only the official government sites figures are official)

Lucy

 

 

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