A need for improved infrastructure to support parents with disabilities and for the collection of concrete data on children born to parents with disabilities to assist government planning and policy.

What does the current data show us. That’s the problem, there is potentially is no current concrete figures on women with disabilities accessing maternity care, birth outcomes, pregnancy complications and whether adequate infrastructures are in place for best birth outcomes and minimise removal rates. Removal rates are sketchy and studies on this matter insufficient in relevance to today’s current population.

Two studies below, one done in 2000 by Australian Institute of Primary Care, Centre for Development and Innovation for Health, Parent’s with a Disability The New South Wales Courts, and secondly by American National Council For Disability, 2012 Rocking The Cradle Report state high incidence of removal rates of children born to parents with an Intellectual disability of upto 40-80%

http://sydney.edu.au/health-sciences/afdsrc/docs/mcconnell-parents.pdf

https://www.ncd.gov/sites/default/files/Documents/NCD_Parenting_508_0.pdf

in 2002 a Department of Human Services funded project looked into maternity services, looking at the barriers women faced and needs of the women. A maternity clinic was developed to meet the specific needs of women living with disabilities and pregnancy. But since then this service has not expanded in to other public hospitals.

Many issues remain in the wider community due to lack infrastructure to ensure services can be accessed that offer specialised disability centred care by the wider public. It is difficult to ascertain if in general high removal rates ate still occurring and as a society we should be trying our best to keep mother and child together.

I definitely don’t want children living in unsafe conditions, that’s not what I am advocating. It’s about putting support services in place for parents to assist them to parent their children independently as possible by helping overcome barriers where possible.

Many of us have informal supports within in our community networks. Friends and family that help support and guide us with parenthood.

People with disabilities often lack these informal supports due to socioeconomic reasons thus require more formalised support systems.

Whether it’s informal or formal we as parents all require them to help parent our children. This is what I am advocating for. A program that helps support and educate new parents with disabilities who lack the informal supports most of us living in mainstream society are privileged to have.

It’s about recognising the adversity faced by women living with disabilities, acknowledging they lack the informal support networks and taking a societal responsibility approach at a government level, implementing appropriate formal support programs to bridge the gaps normally available via mainstream informal supports that this cohort lack.

Some of our family and friends who are informal supports provide:

-A sounding board to vent frustrations

– somewhere to ask questions without judgement

– a place to seek advice and listen in an informal setting of how they problem solved a situation eg an unsettled baby

– support us with child care as we re enter the education system, search for jobs and attend interviews, and need respite from the pressures and responsibilities of parenting.

– hearing our family and friends discuss their unwell children and when and why the sought medical help.

All the things mainstream functional families do to support each other, often people living on the fringes don’t have.

People living with disabilities face adversity. Women with disabilities may have poorer education experiences due to cognition issues or environmental factors, thus affecting their ability to affectively problem solve as young adults.

They may be unemployed and have minimal financial capacity to source help with child care.

May be from families with generational welfare mentality or face discrimination in the workplace due to their disability .

May have had poor parental role modelling as children themselves and may have been victims of abuse and had the involvement of authorities in their lives and are often mistrusting of services.

Due to syndromic medical conditions or poor nutrition often have poor general health.

They may suffer poor mental health due to environmental trauma or familial gene pool mental health disorders,(with rising poor mental health figures in Australia this is becoming an increasing issue even across the mainstream families as well).

Much of the adversity they face may be due to environmental factors when children themselves along with inherited conditions which is not something they could not mitigate as a child. As young adults people with disabilities continue to face ongoing adversity.

What family you are born into is a lotto. Those born to good parents are the lucky ones. Parents that had the capacity to provide for and nurture us is something we should truly appreciate. That is because, we got a good start in life. As we grow into adolescents and adults we have the ability to then start to make choices about our direction in life but as defenceless minors we are at the mercy of others

We need to look at for the rights of the less fortunate in life, and advocate for them

By parents and families retaining the care of their children albeit at times the implementation of government services to help support them as parents, it is estimated the overall cost to the tax payer would be decreased.

With the increase in diagnosis of Autism (ASD) now recognised as a disability and societal changes of the rights of women with disabilities becoming parents, the improvement in medical care treatment thus women with disabilities living often longer healthier lives and improvements in obstetric care and better foetal inutero treatments, outcomes and survival rates, this issue we are talking about will only increase and we as a society need to start putting the necessary infrastructures in place now for best outcomes in the future.

Lucy

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