Skip to content
Queensland Advocacy Incorporated

Queensland Advocacy Incorporated (Q A I) is an independent, community-based systems and legal advocacy organisation for people with disability in Queensland, Australia.

  • Home
    • Latest News
    • Events
  • About Q A I
    • About us
    • Contact
    • Our people
    • Membership
    • Opportunities
    • Support us
    • Funding & acknowledgments
    • Frequently Asked Questions
    • Testimonials
  • Systems Advocacy
    • All Submissions
    • Submissions to the DRC
  • Individual Advocacy
    • Human Rights Legal Service
    • Mental Health Legal Service
    • Justice Support Program
    • NDIS Appeals Support
    • NDIS Decision Support Pilot
    • Disability Royal Commission
    • Education Advocacy Service
    • Social Work Service
  • Resources
    • Organisational documents
    • Legal information and guides
    • Media
    • Papers and presentations
  • Home
    • Latest News
    • Events
  • About Q A I
    • About us
    • Contact
    • Our people
    • Membership
    • Opportunities
    • Support us
    • Funding & acknowledgments
    • Frequently Asked Questions
    • Testimonials
  • Systems Advocacy
    • All Submissions
    • Submissions to the DRC
  • Individual Advocacy
    • Human Rights Legal Service
    • Mental Health Legal Service
    • Justice Support Program
    • NDIS Appeals Support
    • NDIS Decision Support Pilot
    • Disability Royal Commission
    • Education Advocacy Service
    • Social Work Service
  • Resources
    • Organisational documents
    • Legal information and guides
    • Media
    • Papers and presentations

Supported Independent Living – Position Paper

QAI has released a Position Paper on Supported Independent Living (SIL) arrangements. The below Position Statement is an extract from the paper.

 

You can read the full document here.

 

Position Statement

The following position statement is based on the values, beliefs and aspirations that Australians with disability can have a good but ordinary life when they have personal power, control and are
supported to exercise their autonomy and rights as other citizens.

 

  1. Supported Independent Living (SIL) has become the mechanism for the proliferation of the archaic block funded group home. Rather than enabling a person to live ‘independently in their home’, it is in reality shared care in a congregated setting, often not of the person’s choosing but instead organised, negotiated, and created by the NDIS system and the service providers.

  2. A dearth of truthful information about the inflexibility of SIL, has reinforced the misconception that a person with high and or complex support needs must therefore enter a SIL arrangement. Most people do not have any independent unbiased information about SIL and have the mistaken belief that because they live in shared accommodation they must continue in the existing arrangements.

  3. People formerly living alone and supported for 24 hours of support, 7 days per week under the state system, are pressured by NDIA Planners as unwilling participants into SIL arrangements and costing Plans accordingly.

  4. In most instances, the avoidance of information about alternatives and benefits of accessing the NDIS with a non-SIL funded Plan, and lack of transparency regarding the over-inflation of SILS quotes is forcing more people back to the archaic model of group or shared home living.

  5. If a participant wants to share with another person and articulates a desire to share
    some supports with their chosen housemate, (ie: overnight support only, or a combination of one or two activities), each person is very possibly able to obtain a Plan that is not only going to meet their needs but also be less restrictive, more flexible should either housemate wish to relocate, and is possibly more efficient and effective.

  6. The solution to the abovementioned is to abolish Supported Independent Living (SIL) from Plans.

  7. Replace it with individualised NDIS Plans for everyone including people who wish to share accommodation and support. When and where people who choose to live together, wish to share supports they merely state that intention in their Plans.
  • 1 Jul, 2020
  • (0) Comments
  • By Admin
  • Latest news, Papers, Submissions
woman with face in hands

Simply how I feel

A poem from an NDIS Appeals support client about her experience.

****

SIMPLY HOW I FEEL

 

IS MY COUNTRY TRYING TO HURT ME?

Is my country trying to hurt me?
I love my country, does my country love me?
If I say sorry for being sick,
Could I please have access to healthcare, without needing to fight for it?
Would a sorry from me simply do the trick?

My future I can see right in front of me,
Now I am on the DSP,
I simply do not have a money tree,
So old sick and homeless could become a fact,
What are we doing, understanding it seems I lack.

Is my country trying to hurt me?
I love my country, does my country love me?
If I say sorry for being sick,
Could I please have access to healthcare, without needing to fight for it?
Would a sorry from me simply do the trick?

Aussie born, true blue,
A backyard soldier it is also true,
A victim again I am worried I will become,
If I say sorry for being sick,
Could I please have access to healthcare, without needing to fight for it?
Would a sorry from me simply do the trick?

Is my country trying to hurt me?
I love my country, does my country love me?
If I say sorry for being sick,
Could I please have access to healthcare, without needing to fight for it?
Would a sorry from me, simply do the trick?

I ask am I deemed as expendable, unworthy because I stand as one,
It’s my life and I get only one,
So forgive me if I stand and fight,
For simply what I feel should be my basic human right,
So If I say sorry for being sick,
Could I please have access to healthcare, without needing to fight for it?
Would a sorry from me simply do the trick?

Is my country trying to hurt me?
I love my country, does my country love me?
If I say sorry for being sick,
Could I please have access to healthcare, without needing to fight for it?
Would a sorry from me, simply do the trick?

AJJ

 

***

Does this poem resonate with you?  If you’d like to share your NDIS experience with us, send us an email to qai@qai.org.au.

  • 20 May, 2019
  • (0) Comments
  • By Rebekah L
  • Latest news, Papers

Pre-natal screening, testing and choice: Some Misconceptions About Disability

Prenatal screening, testing and choice: Misconceptions about Disability

Misconceptions of Disability – prenatal testing and choice

Introduction

The language of impairment and disability that clinicians use influences the way we talk and think about disability .   Terms like ‘genetic abnormality’, ‘retardation’ and ‘chromosome problem’ are valid in a medical and scientific sense, but they can also be  loaded and emotive when used in a discussion about whether  or not to terminate a pregnancy.   A medical practitioner might say, for example, “Your foetus has a genetic abnormality, so it may have intellectual impairment, a range of medical problems and a shortened life expectancy” and prospective parents may be dismayed by this news, yet the same medical practitioner could also say, “Your child may  have a good life and she or he may be happy, loved and healthy regardless of genetic makeup”.

First trimester screening for Down Syndrome increasingly is accurate, and in hospital and medical information, first trimester screening often is an opportunity to inform parents about potential problems that may arise during the pregnancy.  For women who choose abortion, it is a way, later, to reduce complications,[1] and by that standard, first trimester screening is successful, because few foetuses detected with Down Syndrome in that trimester will be born.

Hospital literature explains the test as ‘risk-reducing’, a way to ensure that women experience no ‘harmful effects’ from reproduction, as if the birth of a child with Down syndrome is something that is undesirable, a “harmful effect” of pregnancy.  Just like tests for sex or eye colour, prenatal tests[2] for Down Syndrome are less medical procedures about health than they are procedures to identify potentially unwanted foetal characteristics, and although testing may be sought to guide the management of delivery and labour, its primary purpose is to provide foetal information so that the woman can decide whether or not to continue with the pregnancy.

Different choices

Women have a right to choose to end a pregnancy; a moral right to decide what to do with their bodies, but to say that prenatal testing and any resulting abortion are not medical procedures does not mean that the practice or motivation is uncontroversial.    A pregnancy test for a minor who has been raped and who does not want a child is not a medical procedure either, and nor is the abortion that may follow.

The test and any subsequent abortion are justifiable, and a doctor is the appropriate agent to carry them out, but that does not mean they serve to protect or restore the patient’s health.  If doctors properly can perform a non-healing intervention in aborting an unwanted foetus, should the same ethical reasoning apply to enable parents to prevent the birth of a child with Down syndrome?    The answer will depend on whether there is a distinct justification for the intervention that is not based on protecting or restoring the health of individual patients.

Testing mythology: Public health

Two reasons are commonly given for prenatal testing.  The first is public health; the second, enhancement of parental autonomy.   The public health goal is to reduce the incidence of genetic disease and defects.     Prenatal tests prevent disease and disabilities because they are a first step in preventing the existence of people with them.

Prevention by prenatal screening lacks one of the common justifications for public health measures: the prevention of medical harm to existing people.   It may be reasonable to treat the incidence of disability among existing people as, in part, a public health problem.  It is problematic to treat the existence of future people with disabilities that way.

Tax-payer funded screening appears to reflect a judgement that lives with those screened-for conditions are burdensome  –   to the child, their family and to society  –  and  to the extent  that to avoid them is a health care priority.  It is judgement that exaggerates and misattributes many of the difficulties associated with those conditions, because the principal difficulties faced by people with disabilities and their families stem from discriminatory attitudes and practices, and the remedy is social, legal, and institutional change that we can achieve in the same way we combat discrimination against Indigenous or transgendered people: through legislative and social reform.   Condoning the selection of embryos and fetuses with disabling traits perpetuates the misconception that the problem is the disability rather than a society that could do so much more to welcome and include all its members.

Parental autonomy

The second reason offered in support of prenatal screening is enhancement of parental autonomy.   The justification for enabling a woman to decide whether to have a child surely is stronger than the justification for enabling her to decide what kind of child she will have.

Pregnancy makes demands on a woman’s body, and parenthood involves an enormous, open-ended commitment.  To treat the choice between having a disabled or a non-disabled child as one that is of a similar magnitude to the difference between having and not having a child at all exaggerates the burden of disability and ignores the social sources of so much of that burden.

People with disabilities and their families face difficulties in our present society, and perhaps some of those difficulties would remain even after comprehensive social reform.   Few disabilities are so undesirable that they provide good reason for abandoning a parental project all together: for declining to become a parent to the child who would develop from the diagnosed fetus.    Given the difficulties that a disabled child is likely to face in our present society, a prospective parent may have good reason not to cause disability, but that is not reason enough to select against a fetus with a disability.   The ideal of unconditional welcome is one that is opposed to the exercise of selectivity through prenatal testing.

If a child develops a disease or a disability such as diabetes or acquired brain injury (most disabilities are caused by accidents or disease, not by genetic variations) loving parents incorporate the challenges into the way they raise and nurture that child.   Society does not condone the rejection of those challenges.

If, on the other hand, we accept the use of biomedical technology to give parents greater choice in the kind of children they have, how could we justifiably limit that choice to the avoidance of genetic impairment?   To be consistent, we must permit testing for any conditions parents might find burdensome or desirable, such as gender, sexuality, eye-colour, height, skin color or intelligence.  Even if we are comfortable with such parental selectivity, enhancing it should not enjoy the priority given to measures that protect the choice about whether to become a parent in the first place.

Conclusion

If we object to unfettered choice as a corruption or debasement of the parental role, we should not make an exception for disability.   To do so is to treat disabilities as uniquely burdensome, in the face of contrary evidence from research on families with children with disabilities.[3]   To assume that most genetically detectable disabilities impair the prospects for individual and family flourishing in a way that other potentially detectable characteristics do not is to stigmatize disability.   Such stigmatization may be understandable when it is displayed by anxious couples awaiting a life-transforming event, but it should not guide the public funding of reproductive research or the formulation of reproductive policy.

Given the difficulties in justifying the public funding of research and development in prenatal screening, the money spent for that purpose might be better used for research on improving the health, functioning, and longevity of children with genetically based impairments.

 

[1] See, for example, Mater Mothers’ Hospital. 2016.  Pregnancy—testing for Down Syndrome and other chromosome abnormalities –   Information for expectant parents. <http://brochures.mater.org.au/brochures/mater-mothers-hospital/pregnancy%E2%80%94testing-for-down-syndrome-and-other-chro>

[2]  Prenatal diagnosis may be conducted, for example, via amniocentesis, chorionic villus sampling, or preimplantation genetic diagnosis (PGD).

[3] For example, C Baxter et al. 1995.  A longitudinal study of parental stress and support: from diagnosis of disability to leaving school in International Journal of Disability, Development, and Education;42:125-136.

P Ferguson. 2001. “Mapping the family: disability studies and the exploration of parental response to disability” in G Albrecht, K Seelman and M Bury. 2001. Handbook of Disability Studies. Thousand Oaks, Calif: Sage Publications.

  • 23 Apr, 2018
  • (0) Comments
  • By Admin
  • Media releases, Papers

Final Report: Walk the Talk Forum: Realising the National Disability Strategy and our human rights promises

A comprehensive report summarising QAI’s human rights forum, Walk the Talk: Realising the National Disability Strategy and our human rights promises

Report on Walk the Talk Forum 2017

  • 19 Jun, 2017
  • (0) Comments
  • By Emma Phillips
  • Papers, Resources

Issues Paper on the intersection of the international human rights treaties: Focussing on human rights in specific areas

Issues paper – intersection of international conventions 26.09.16

  • 1 Mar, 2017
  • (0) Comments
  • By Emma Phillips
  • Papers, Resources

Annexure of case studies to issues paper on the intersection of the international human rights treaties and their relevance for the human rights of people with disabilities

A summary of case studies to highlight the issues discussed in the issues paper for the Walk the Talk forum

Issues paper – Annexure of case studies

  • 1 Mar, 2017
  • (0) Comments
  • By Emma Phillips
  • Papers, Resources

Highlights: Walk the Talk: Realising the 2010-2020 National Disability Strategy and our human rights promises

A summary of the highlights of QAI’s Walk the Talk Forum: Realising the National Disability Strategy and our Human Rights Promises

Highlights of Walk the Talk – Realising the NDS and our Human Rights promises

  • 1 Mar, 2017
  • (0) Comments
  • By Emma Phillips
  • Papers, Resources

Walk the Talk: Realising the National Disability Strategy and our human rights promises

Research paper exploring the intersection of the United Nations’ human rights treaties and conventions and their relevance for ensuring respect for the fundamental rights of all persons with disabilities to participate in an ordinary, inclusive life in Australia

Research paper – intersection of international conventions November 2016

  • 1 Nov, 2016
  • (0) Comments
  • By Emma Phillips
  • Papers, Resources

Decisions About My Life? The Choice Should be Mine

QAI’s position statement on supported decision-making

QAI Paper on supported decision-making

  • 12 Sep, 2016
  • (0) Comments
  • By Emma Phillips
  • Papers, Resources

A Human Rights Act: What it is and why we need one in Queensland

Article by Emma Phillips and Dan Rogers for Right Now on the need for a Human Rights Act in Queensland:

1494812672-1494409963-HRA article for Right Now

  • 12 Nov, 2015
  • (0) Comments
  • By Emma Phillips
  • Papers
Follow us

Facebook (@queenslandadvocacy)

Twitter (@qldadvocacy)

YouTube
Main
  • Home
  • About Q A I
  • Latest News
  • Upcoming events
  • Systems advocacy
  • Individual Advocacy
  • Resources
  • Contact
Contact QAI
Logo
  • (07) 3844 4200
  • (07) 3844 4220
  • 1300 130 582
  • qai@qai.org.au
  • qai.org.au

Events
  • Love, Sex & Family - A Human Rights Forum & AGM

  • Event Date: 10/10/2019


  • See all events

© 2019 All Right Reserved | Queensland Advocacy Incorporated (Q A I)