Maternity care for the disabled.

I’ve been a Registered Midwife for 30 years. I trained in a world leading tertiary obstetric and gynaecology hospital. I’m fortunate to live in a country that has a health system that offers government-funded healthcare to every citizen. In 1984 the Australian Prime Minister Bob Hawke introduced Medicare which enables every Australian universal healthcare. This allows not only the affluent but the non affluent, the vulnerable and disabled to have medical treatment despite income, education, sex or race. According to the Australian tax office the employed pay a tax levy of 2% of their annual taxable income in addition to tax paid on taxable income, in which help funds the health system. This levy can vary depending on taxable income and some are exempt.

To put some perspective on this. Data from the The Australia Institute of Health and Welfare (AIHW), states more than half the Australian population -53% are employed. 12.5 million people are aged between 25 and 64. This is the labour force.

According to Australian Bureau Of Statistics (ABS) 2018 figures, the average Australian earnt $63,715.66 per annum in which $1274 a year or $24 a week is paid in Medicare taxes. The country has approximately 12 million employed people thus it would then seem every week the government receives approximately $294,072,277.00, almost 300 million dollars a week amounting to 15 billion dollars a year is approximately being paid in Medicare Taxes. On top of that some citizens are choosing to pay additional money to private health insurance companies and which also contributes toward money in the healthcare system.

I believe as a society to a point we should be helping the less fortunate and vulnerable. For half of my midwifery career I have specialised in women living with a disability who are pregnant and have a lot of experience in this area as a result. I worked on a government-funded project as a result of research stating barriers to health care. This project consisted of a pilot program specifically having an antenatal clinic for women with a learning disability that addressed the difficulties these women had accessing the mainstream maternity health system. The focus was to achieve better pregnancy experiences for the women and birth outcomes. I was instrumental in having the pilot program integrated into the maternity care program at the hospital in which I worked at the end of the pilot. I have the dual role of coordinator and direct clinical service to pregnant women providing antenatal and postnatal care. I have continued to evaluate and develop the clinic over the past 16 years to provide best practice in this area. The clinic as a result of continual evaluation has extended over time to provide maternity care for women with cognitive, sensory and physical disabilities. I feel quite passionate about ensuring these women are offered a high level of care as citizens of Australia and proud to have been apart of improving healthcare to this cohort of women. These women are an important part of our society despite being a minority. Over 4 million people (1 in 5) in Australia have a disability of some kind and 18.6% of females have a disability. Most often subjected to living with a disability through no fault of their own as with many other conditions affecting people within the Australian population. It’s important we support and provide the care needed to enable people living with disabilities.

The Disability Act ensures a person with a disability cannot be discriminated against or treated unfairly because of their disability. The Disability Act 2006 (the Act) commenced on 1 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 came into operation and the Disability Regulations 2018 replaces the 2007

Many women have more than one type of disability and although mental health falls under the banner of disability our criteria focus’ on the cognitive, physical and sensory. We focus on the strengths a woman has and try to build on those strengths by supporting the areas in which she has difficulties.

Many women with disabilities are judged for having children, but they are like most other women who have the desire to be loved and give love and have a child of their own. Over the years I have done presentations on this topic of women with disabilities and pregnancy care and parenting.

A common question I’m asked by the public is.

Will their children have a disability? Not necessarily. Depending on the reason the person having the child has a disability can influence the chance of a baby having a disability. Genetic counselling can be provided if planning a pregnancy or during pregnancy if the women would like this.

Some examples are, a blind couple. The mother has a genetic disorder retinitis pigmentosa and the husband has lost his sight in an accident. The couple are offered genetic counselling as retinitis pigmentosa is hereditary, however may decline because they may decide that if the child has inherited the gene for the mothers genetic disorder they would not terminate the pregnancy. Living without vision may not be seen this as a reason to terminate a pregnancy. Th child may be born unaffected.

A women with osteogenesis imperfecta which was a condition her baby could be born with may choose to have her baby despite knowing the baby had been diagnosed with the condition as a result of genetic counselling and antenatal investigation.

As shown here some conditions are familial/inherited but the child may not carry the gene responsible for the condition and if they do the parent may still choose to continue with the pregnancy. Medical or surgical termination of pregnancy may be offered in certain cases under State Laws.

A person may have cognition issues as a result of an accident that had resulted in brain damage, known as an acquired brain injury. This is not something the baby will inherit. If a parent has a learning difficulty it does not necessarily mean the child will also. As mentioned in the previous paragraph it may be acquired, or environmental and not always an inherited syndrome. Affected genes may be recessive or not passed on in all cases if a chromosomal syndrome.

A couple who both born with Achondroplasia ( short stature). Some may recognise the now outdated terminology of dwarfism. Their baby will not necessarily inherit Achondroplasia and can be born as a baby of average weight and bone lengths. Genetic testing can arrange investigations to diagnose and inform parents if their baby has or has not inherited the condition.

A women with Multiple Sclerosis (MS) will not give birth to a child affected by her MS. A paralysed women may be so due to many reasons, a stroke, or trauma.

Disabilities may be acquired they are not necessarily genetic and not all conditions even if genetic necessarily will be passed on to their fetus.

There are so many facets to my job that it makes is so interesting. Each case is unique, each family unique, therefore their antenatal care needs to be tailored to their individual needs. Things that can require consideration is ability to give medical consent, guardianship orders and it’s circumstances and the laws governing that.

Example: A women in a coma as a result of a car accident who is diagnosed with an early pregnancy can not have a termination at the request of a parent or other person. There are many things to consider. The women may or may not be aware of her pregnancy, a women may come out of her coma and be able to recover and care for her child in time. A termination is a very serious decision and not taken lightly. The Victorian Civil and Administrative Tribunal (VCAT) hear’s such cases about civil rights of the disabled, particularly people with an intellectual disability. There are many laws in place to protect the disabled and also the baby of women living with a disability. Being aware of these situations and laws is part of my role.

It’s not for health workers like myself to judge whether certain people should or should not have children. That is a civil rights matter. My role is to ensure all women have the best possible care for health outcomes for mother and baby and working alongside a dedicated social worker adequate community linkages to assist the women to parent as independently as possible. Many women with disabilities may be isolated and not having the informal supports mainstream mothers may and community services can help fill the gaps in this support network. Sometimes it is simply referring families to occupational therapists who can help organise modified equipment to enable a mother. Once the pregnancy is over its important to ensure an appropriate contraception is offered to encourage family planning as for any women should the women desire.

I view that these women are people are members of the community like any other. I treat their disability as I would treat any person with a ‘chronic’ condition, like diabetes or epilepsy. They live with this everyday and as health professionals our role is to ensure their health is maintained with treatments and community supports where possible to help manage the condition.

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Everything should be done to help enable the women to parent as independently as possible. Professionals should plan the antenatal care and prepare for discharge ensuring she feels empowered in her care and decisions as much as possible. Midwives have a duty of care by law to her and her baby, and must ensure the baby is going home to a safe and nurturing environment. There are situations where despite all efforts a women does not have the capacity to safely care for her newborn and mandated reporting to necessary agencies is required.

Sometimes this government body can help fund services to enable the mother to continue to be the primary carer of the baby. There are times other family members may be sought to do this role. Every effort is to be made to keep the baby within the family’s care. Once again this is very complex and requires experienced specialist and dedicated professionals to aid best outcomes for all concerned. Understanding barriers for the women and psychosocial situations, often rare medical conditions /syndromes and the impact that may impose on the pregnancy and ability to parent safely and effectively.

Women living with disabilities can definitely parent and have traditionally been over represented in the children’s court due to personal prejudices and lack of knowledge by professionals and societal perceptions. With better education of professionals and community workers and better tailored programs we have seen a shift.

However there is much work to be done. Safety and well-being of the women and vulnerable newborns must always be considered and taken into account when planning antenatal care and discharge from hospital to the community.

Midwives not have one but two patients. Mother and baby. From my experience caring for women living with disabilities can at times often require many hours dedicated to each individual due to complexities and therefore the need for maternity clinics with the expertise and framework to provide best practice, offering as little or as much support and care required by each individual. With the involvement of a multidisciplinary team it can also be extremely rewarding.

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Love Lucy x

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