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the womens1Disability and maternity care the royal womens hospital
About the WIN clinic
Establishment
In 1998/99 the Victorian Department of Human Services introduced funding for maternity services to promote and support cultural shifts from traditional hospital practices to more flexible, women centred practices for a range of maternity services. The program aimed to promote improvements to the provision of a range of maternity services, based on women’s individual needs. It was within this policy and programmatic framework that the WIN project (pilot) at the Women’s was funded in 2002 after extensive research in 2001 into the needs of women with disability. Issues the 2001 research identified included:
For women with an intellectual disability:
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Fear of an inability to comprehend the system
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Fear of and an inability to comprehend information about the process of pregnancy, labour and birth
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Fear in relation to intervention by Protective Services
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A need for appropriate support in labour and postnatal period
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A desire for information about caring for their babies
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Some revealed experience of sexual abuse
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Many demonstrated various levels of understanding about their own bodies For health professionals:
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Concern about lack of staff skills, knowledge and practice
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The need for service coordination and continuity of care
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Frustration there were not options to address the parenting skill needs of this group
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Social workers reported women with intellectual disability didn’t attend antenatal clinics regularly and frequently presented late in pregnancy, faced social isolation, low income and unstable housing situations.
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A common outcome after birth was a notification to child protection prior to discharge and babies were often removed from their mothers pending further investigation. This was viewed as destructive for both mother and baby. This outcome was viewed as a result of failure of the system rather than any abuse or intended neglect on the part of the mother of the baby.
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The need for staff awareness/education programs regarding disability For community sector workers:
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Limited resources and late referrals were placing pressure on services to coordinate care. It was agreed that planning appropriate supports needed time and the earlier the referral the greater the opportunity to build rapport and trust
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There was a complex intersection between family support services and Protective Services
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Concern about the role and responsibilities placed on family members, particularly grandparents.
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Too many services were involved with each family and it was often overwhelming and confusing The Women’s I Disability and maternity care [Report subtitle] 1
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All agencies noted problems with a lack of continuity, especially between the antenatal and postnatal period and beyond.
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Challenges with disability identification and the need for assessment tools including early identification and timely interventions
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Development of appropriate resources tailored to the needs of women with cognitive disability.
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The need for accessible communication supports and techniques
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Continuity of care led to better attendance at healthcare appointments for other/future health issues and needs.
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The need for better coordination across agencies The WIN clinic today
Since the WIN pilot in 2002, the clinic has since expanded and now cares for approximately 60 women per year. It is the only hospital-based service of its kind in Australia supporting pregnant women with, intellectual or learning disabilities, physical disabilities or sensory impairments and neurological disabilities.
The WIN clinic has a dedicated Midwife, who provides continuity of antenatal and postnatal care, pregnancy related information and postnatal outreach for up to six weeks after the baby’s birth. The Midwife also provides care coordination within the hospital setting, assisting with integration to the appropriate stream of care, and providing support at appointments, specialist childbirth education and liaison with community based midwifery services. A Social Worker assesses a woman’s psychosocial needs, provides information about service options, advocacy, practical assistance, emotional and other support and referral to community services. The Social Worker also provides support to families and partners, assistance with accessing material aid and housing (if needed) and developing a post-natal care plan with the woman.
Around 9 per cent of women referred to the WIN clinic identify as being from an Aboriginal and/or Torres Strait Islander background and 25 per cent of women are born overseas.
We know from our own research and others that women with disability have poorer perinatal outcomes, including higher risk of preterm babies, and caesarean section. Their infants are more likely to be low birth weight, and be more likely to be admitted to special care or intensive care unit. We acknowledge women with disability also have poorer experiences often relating to lack of knowledge of care providers and reduced autonomy and are often overrepresented in the court system.
Perinatal outcomes of women with disabilities
The Women’s, in partnership with La Trobe University, conducted the first study in Australia to examine pregnancy and birth outcomes of women with various types of disabilities including physical, cognitive, sensory and intellectual - with the findings published in leading obstetric journal the Australian and New Zealand Journal of Obstetrics and Gynaecology. The research aimed to compare the outcomes of women with a disability who received pregnancy care through a specialist disability informed clinic (the Women’s WIN clinic) with hospital-wide perinatal outcome data. The breakdown of referrals by category were: (figures are from 2017-2018)
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44.1 per cent cognitive impairments
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12.6 per cent neurological
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39.6 per cent physical
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12 per cent sensory. Note: the total exceeds 100 per cent as some woman experience more than one type of disability.
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The research adds to the global evidence-base acknowledging that women with disability have higher rates of poor perinatal outcomes - including preterm births, low birthweight babies and admittances to Special Care and Neonatal intensive Care Units - when compared with general maternity data.
Disability identification
There is currently not a consistent or recommended method of asking about disability status within health services nationally. It is not included in the list of mandatory reporting items within the Perinatal National Minimum Data Set (NMDS), despite it having a potential impact on health outcomes for both mothers and babies making it impossible to understand the prevalence of women accessing maternity services with a disability.
This data is essential and will allow for population-level surveillance, clinical care planning and provision, and to inform research on the link between disability status and other maternal and perinatal outcomes.
Failure to correctly and consistently identify, document and refer patients with a disability may lead to adverse clinical outcomes and can lead to potential funding shortfalls for health services.
The Women’s, in partnership with La Trobe University, has just completed research that will enable us to understand how women like to be asked about disability status and also give us more insight into the existing identification processes in maternity services nation-wide. In 2022, the Women’s will implement a new question and response options on disability status
Disability and notifications
In 2019, the Women’s examined data collected from between 2014 -2019 in regard to Child Protection notifications of 87 women referred to the WIN clinic with a cognitive impairment. 75 of these women delivered live births at the Women’s hospital. Those who did not delivered elsewhere, miscarried, and one had a neonatal death.
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Of the total women referred to the WIN clinic who had a live birth, 38% per cent were women with cognitive impairments
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Of those with a cognitive impairment that birthed at the women’s, 39% per cent were subject to notifications to Child Protection by an outside source and/or via the Women’s social work department.
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Of these, 48.28 per cent were placed within guardianship, other than the biological mother. Therefore the majority (51.72 per cent) did not go on to have guardianship orders for their baby whilst under the care of the WIN Clinic.
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18.67 per cent of babies born to all mothers with cognitive impairments who birthed at the Women’s under the care of the WIN clinic were not in the care of the biological mother at the end of the neonatal period, however only 8 per cent of those were placed in a foster care arrangement.
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In total, for women with a cognitive impairment receiving care at the WIN clinic, 92 per cent of babies remained within the family unit with either the mother or family member as carer and 81.33 per cent remained with the mother as the primary carer.
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8.8.20 - 7. 7 .22 data
It is important to take into consideration this data is taken during the COVID19 pandemic. Many community supports systems were disrupted and limited due to Government health restrictions during this period in Melbourne Victoria.
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Of all referrals to WIN clinic 26 per cent had a cognitive impairment. 2 women had medical guardianship orders in place. Some of the women delivered elsewhere, or miscarried.
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28 per cent of all live births were to women with a cognitive impairment.
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Of those with a cognitive impairment that birthed at the women’s, 50 per cent were subject to notifications to Child Protection by an outside source and/or via The Women’s social work department.
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Of these, 80 per cent were placed within guardianship, other than the biological mother. Therefore 20 per cent did not go on to have guardianship orders for their baby whilst under the care of the WIN Clinic.
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One mother had an Enduring Power of Attorney and a family member was the voluntary guardian and a notification to child protection was not required. 43.3 per cent of babies born to all mothers with cognitive impairments referred to the WIN clinic who birthed at the Women’s were not in the care of the biological mother at the end of the neonatal period. 20 per cent of were placed in a foster care arrangement and 23.3 per cent had guardianship care with a family member. Some of these women were also under the care of the Women’s Alcohol and Drug unit and Baggarook (Aboriginal team midwifery) care.
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In total, for women with a cognitive impairment who birthed at The Women’s and were referred to the WIN clinic, 80 per cent of babies remained within the family unit with either the mother or family member as carer and 60 per cent remained with the mother as primary carer.
Breakdown of category of disability type of all referrals in this time period
- 26.2 per cent cognitive impairments
- 16.7 per cent neurological
- 45.2 per cent physical
- 12.7 per cent sensory Note: the total exceeds 100 per cent as some woman experience more than one type of disability.
Conclusion
The Women’s recognises the importance of disability identification, advocacy of early referral to appropriate level of maternity care and external resources for targeted support. From an obstetric angle, it enables patient-centred care supporting optimal growth and welfare of the fetus and promoting the psychological and physical health of the woman. She in turn experiences the best possible mental and physical health throughout the pregnancy and as a new mother and the newborn is born as healthy as possible. This model of care promotes confidence and the ability to parent with a disability as independently as possible
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It is recognised there is a need to support and allow further exploration of potential poor perinatal outcomes of this cohort on a larger sample to help identify factors amenable to interventions that may improve outcomes. Better data needs to be collected and added to perinatal data sets, which would assist governments to develop policy on maternity care options, and support services for this cohort of women.
Ensuring newborns and infants are thriving beyond our WIN program would be beneficial as a continuum of the work we commence in the antenatal and neonatal period. This recognises the importance of early intervention for improved outcomes. Further expansion of this program in more maternity hospitals nationally would benefit women with disabilities accessing maternity care.
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