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

I commenced my training in General Nursing in 1983 and have been a Registered Nurse since completing my course in 1986 and a Registered Midwife for the past 30 years as well. I gained many years experience in emergency nursing and then moved my focus to maternity care for women living with a disability for the past 16 years where I have specialised in caring for women living with a disability during pregnancy and preparing for parenting.   I received a scholarship to study women parenting with a disabilities and have taken part in a Department of Health and Human Services (DHHS) project focusing on women living with disabilities and accessing maternity services, participated in training videos and co written articles on best practice for health professionals caring for women with a disability, been on various focus groups and clinical working groups, participated in various media interviews on women with disabilities, families and children. I have contributed to a PhD Dissertation on disability services and access, a Melbourne University study on reproductive and sexual rights of non-English speaking immigrant women with disabilities and thesis written by student undertaking a Masters of Public Health on people with disability accessing maternity care at a particular institution. I have presented at various professional conferences on the subject and won an award for working in diversity. I continue my work with a view to improving access and better healthcare to women living with disabilities with an aim to providing best birth outcomes for women and babies and helping to enable women with disabilities to parent as independently as possible, through adequate planning and community linkages.         .

I draw on my expertise and experience to discuss what I recommend if considering working in this area. My experience has been focused in Victoria Australia however the same principles can be applied elsewhere with knowledge of local laws.

Dedicated staff with knowledge and experience of the needs of pregnant women living with a disability.

To offer a service to women with disabilities it vital you understand the barriers to health care, lived experiences, discrimination towards the disabled, particularly around choice to have a child by their families, friends, the general community, health professionals and agencies.

I cannot stress enough the individual nature of disability. One solution does not fit all. Each situation needs to be viewed as individual and care tailored towards that individuals needs. This may be no support required, or very little support required to full assisted care, and the women should be empowered to be included in all decision-making

Have a belief that generally women living disabilities can parent given adequate supports.

Women who live with disabilities can have the ability to parent given adequate supports tailored to their needs as per women in general.  These may be the adjustment of regular baby equipment to enable safer easier use of equipment, linkages to assist where mainstream parent supports maybe lacking due to isolation and lack of informal supports, awareness of cultural barriers, environmental conditions resulting from living and supporting a family on minimal wages/government assisted benefits, and underlying medical and health conditions. A holistic approach is required.

Due to socioeconomic reasons these women can often face the same barriers as women without disabilities living under similar circumstances but are more scrutinised because of their disability.

Knowledge of community services for support

There are many community supports that can be offered and knowledge of these within your area helps facilitate appropriate linkages for ongoing support.

Knowledge of current government schemes and financial supports. An example is carers support. Is the primary support person/carer of the women (if she has one) eligible for financial support?

Australia has just rolled out the NDIS. This is a complex insurance scheme still in its infancy and understanding the criteria, application process, planning assessment and ongoing reassessment of needs requires ongoing vigilance to enable informative and accurate information giving to patients. Many patients have not even heard of it nor understand it’s functionality and aware they may be eligible.

Ability to assess strengths and weakness’ and to engage with the women to build on the strengths and community links advocacy to bridge gaps where possible.

Disability is very individual. Many women are high functioning and require no or little assistance with activities of daily living. It helps with planning to understand what the women’s perceives as her strengths and difficulties and where she perceives gaps in her ability to independently care for her newborn.

Professionals need to be transparent regarding concerns, giving the mother to be every opportunity to engage with services around these concerns and made aware of the consequences if these concerns cannot be mitigated.

The dedicated team can suggest services and assist with linkages and provide advocacy for the women. It’s important the mother feels heard and listened to regarding her perceived needs, and that a trusting and respectful relationship between professionals and patient exists for best outcomes. Professionals need to empower the women in decision-making.

Planning for delivery and discharge throughout the pregnancy allows time to put the necessary supports and equipment to aid independent parenting in place. This is a better alternative to a crisis response.

Training of health professionals within the workforce caring for women living with disabilities

Many health professionals have bias’ unconscious and conscious regarding women with disabilities choosing to have children. Ongoing education of the rights of the disabled should be foremost and an understanding of civil rights and their obligation to treat each person with respect and kindness as for anyone in the population. Many of these women are very educated independent women in their own right, and those who are the vulnerable of our society deserve equal care and protection. Given the right to equal healthcare and every opportunity to parent.

Longer appointment time

Appointments can take longer due to more complex medical situations, need to use equipment for transfers, need for interpreters such as AUSLAN and deaf interpreters, and time for questions and understanding through discussion around plan of care and options.

Also patients with complex psychosocial circumstances often require more time to address issues comprehensively.

More frequent antenatal appointments

Research shows this cohort of women have generally poorer health that may impact on the pregnancy. This may be due to syndromic issues, a physical disability impacting on general health, or poor general health due to environmental reasons. Therefore seeing the patient 3 weekly until 36 weeks gestation and then weekly until delivery promotes a trusting relationship between patient and healthcare professional and allows for early detection of obstetric problems and ongoing care organised in a timely manner.

Some patients find for various reasons difficulties attending appointments so a specific worker who coordinates the individuals care within the establishment for example midwife or social worker in a hospital with this dedicated role to monitor if patients are attending appointments and if not attempting to investigate why by asking the patient and problem solving the situation to enable regular antenatal care for best birth outcomes.

Outreach capacity for child-birth and early parenting information sessions

Research has shown that women particularly with cognitive impairments learn and retain information better if taught in the environment where it will be applied. People with altered cognition often have difficulty transferring information from one setting to another.

From experience it is beneficial also for vision and the physically impaired so practical solutions can be sought in regards to difficulties perceived with parentcraft. This may be transporting a baby around within the home from room to room or practical setting for bathing or going out with baby.

Outreach capacity for postnatal follow-up in the neonatal period

The antenatal and postnatal outreach capacity is one of the main features of success. The capacity for extended postnatal support, allows continuity of care from hospital to home and a smooth transition to community services that will remain more long-term. It ensures the women is not left ill prepared to care for her newborn and that a safe environment exists for mum and newborn.

Women particularly with cognitive impairments benefit from extended midwifery support as it is known they require more time to learn tasks. It’s not that they can’t learn, it’s often they need more time to practice the skill before mastering it. Expertise in learning styles by a dedicated team on disability to help demonstrate and teach the mother in a way she can safely and confidentially care for her newborn and that the baby is thriving as a result. Through this time further assistance can be given to help support the families and women with strategies put in place where possible to help remind and inform the women around care needs and parentcraft, such as lists to remind the mother of feeding schedules to prompt memory. It’s important to help implement the right tools for success. Women with cognition difficulties may have poor reading and writing skills, be concrete thinkers, unable to abstract think, have difficulty with problem solving and are more often visual learners.

It is requirement by law that all babies are discharged to a safe and nurturing environment and midwives are mandated in Australia to report to authorities where there are significant concerns. With this extended ongoing support in the neonatal period when newborns are often at their most vulnerable, particularly if the women is initially having significant difficulties could mean the women avoid the court system from unintentional neglect.

The aim is to give every women the opportunity to independently parent her child despite past experiences. Each experience is seen as new with new circumstances and the benefit of learning from past experience.

Postnatal care must be tailored to the mothers individual needs, once again offering as little or as much support as required.

Multidisciplinary approach

When all professionals work together for the well-being of mother and baby best outcomes are achieved. This may include having medical team meetings (MTM), and birth and discharge planning meetings with the relevant community services and hospital staff.

A MTM may include the anaethetist, medical consultant, pharmacist, ward midwifery staff, psychiatrist, unit manager of theatre, occupational health and safety officer re equipment, physiotherapist and specialist midwife and social worker coordinating care. Patients due to health reasons are sometimes delivered in a general hospital rather than maternity hospital, may require admission to intensive care, complex care units, and may require rehabilitation. These meetings allow a cohesive approach to discussing ongoing antenatal care and birth planning

Birth and discharge planning meetings with community case workers, community support agencies, local medical officer, occupational therapist, assigned midwife and social worker and the patient along with relevant family members.

Ability for patient to contact team member for continuity.

Most people have mobile phones so it’s important the assigned midwife has access to a hospital supplied mobile so patients can text, call or email to ask any questions and be given support. Having a team of people such as a midwife and social worker that the patient feels comfortable calling and who knows their situation well can prevent a lot of stress and anxiety and makes the navigation of the mainstream system easier. Continuity of care is advantageous.

Knowledge of the National Disability Insurance Scheme ( NDIS)

The NDIS is rolling out across Australia. It was initiated by the Australian Government for Australians with a disability, including people with intellectual, physical, sensory, and psycho-social disabilities. The aim of the NDIS to support Australians with a permanent and significant disability, with the reasonable and necessary supports they need to live and enjoy an ordinary life. If working in the disability sector it is necessary to understand this scheme.

Knowledge of laws pertaining to consenting to medical procedures and guardianship orders

The Victorian Civil and Administrative Tribunal (VCAT) is a tribunal  that hears and decides civil and administrative legal cases in the State of Victoria, Australia. It was established in 1998 and is the busiest tribunal in Australia. It finalizes more than 85,000 cases a year, mostly disputes at over 45 venues across Victoria. It is supported by the law courts of Australia. In cases where the ability to consent to a medical procedure is doubted the case is presented to the tribunal. If it decides the person is unable to give medical consent a medical guardian can be appointed by the tribunal. A  medical guardian gathers the information about any proposed medical procedures and presents it to the tribunal for advice about whether a treatment is appropriate for a person. Other states have tribunals under their own jurisdictions. This legislation is guided by the Guardian and Administration Act 1986. A Victorian appointed guardian, be it administrative or medical only has jurisdiction in the State of Victoria. There are provisions for recognising appointments of substitute guardians if a person travels between states. Doctors have a duty of care to provide lifesaving treatment and the authority to perform necessary treatment at the time. A informal guardian such as a parent acting in the patients best interest can give consent on these occasions.  It is the doctors responsibility before performing any procedure to be satisfied the patient is making an informed consent. It is advisable that health workers working in disability understand the process required regarding ability to consent to medical procedures.

Knowledge of the disability Act and the rights of the disabled

The Disability Act of Victoria ensures a person with a disability cannot be discriminated against or treated unfairly because of their disability. The Disability Act 2006 commenced on the first of July 2007. The Act provides for a framework for the provision of high quality services and supports for people with a disability. The Disability Amendment Act 2017 authorised the sharing of information for the purpose of implementing the NDIS and gave powers to the Disability Services Commissioner to investigate abuse and neglect in disability services.  Disability Regulations 2018 replaced the 2007 regulations.

The Australian Human Rights Commission is a National Human Rights Institution, established in 1986 as the Human Rights and Equal Opportunity Commission and renamed in 2008. It a statutory body funded by, but operates independently of the government. The Human Rights and Equal Opportunities Commission states Victorian Hospitals and other government institutions have an obligation to provide AUSLAN interpreters for the deaf if required.

Ensuring women are enabled within your service, not further disabled

Ensuring accessibility for equipment and provision for individualised equipment. Ask the patient before presenting for an appointment or planned inpatient stay what specific equipment may be required during their appointment or inpatient stay. Hire necessary equipment if required. This requires planning and communication. A disability friendly environment. When structural changes are required or new buildings enlist an expert to ensure it meets the needs of the disabled. Policies and guidelines around care and criteria should be in place.

Ability and experience to work with high risk families

Disability is often associated with low socio economic status (SES). Global studies indicate that women with disabilities have greater risk of experiencing stressful life events during the course of their pregnancy than women in the general population. They also present with higher rates of intimate partner violence and/or domestic violence and can be further complicated if inadequate post-delivery social support is available to them. Research has established maternal stress is an important factor for adverse outcomes in pregnancy. Its important care is approached in a holistic manner to minimise adverse outcomes. Health Professionals with experience working in high risk family management are important members of the team.

Experience in high risk maternity care

If there are medical complexities and the patient requires appointments with medical staff this should be with a senior doctor – Obstetric Registrar or Consultant and Physician. A midwife assigned to the care of the women should be available to attend appointments if required with the women to aid advocacy, ensure understanding and as support.

The midwife and medical staff can work together alternating appointments if the patients not appropriate for midwifery led antenatal care.

Ability to be compassionate, understanding and show kindness

Disabilities may be acquired or congenital and the women have had to live their lives with adversity. They have often had poor experiences with authorities, medical services and schooling life. Many may have been bullied and isolated at school or in the workplace. Sometimes adverse outcomes happen in pregnancy but the women deserved to be treated respectfully and kindly.

Advocacy skills

Many women with cognition issues may not have the capacity to advocate effectively for themselves. There are occasions when people living disabilities are not listened to or heard and deserve to be supported in their wishes where possible and discussions undertaken to ensure their choices, decisions and abilities are not disregarded by services, professions an judgements around their capacity.

Experience with the Department of HumanServices Child Protection (DHHSCP) and procedures

Familiararity with this process and the ability to give advocacy where needed. There are 2 people concerned in these situations. The rights of the mother and welfare of the child. Both must be considered. Knowledge around the powers of DHHSCP and court orders such as Interim Accommodation Orders is valuable.

Lucy x

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