Aspect Positive Behaviour Support:
Advocating for your Child – 2/2013
This information sheet can be used by parents and carers when thinking about
advocating for their child or adult, especially where there is disagreement or conflict
due to concerns about challenging behaviour.
There will be a time as a parent where you will have to advocate for your daughter or son, to
be their voice, to express their view and to try to make sure this is understood and listened to.
Where there is challenging behaviour there is often tension among those who support the
person and good advocacy is essential here. There are many sides to being a good advocate
and we have listed some of these below.
This information sheet is a brief introduction to the topic and we recommend reading further
about this issue. One useful book is “The Everyday Advocate: Standing up for your child with
Autism or other special needs”. It’s written by American mum Areva Martin and was published
by the New American Library in 2010. Part one of the book (pages 49-45) is called “Advocacy
101: The Principles of Advocacy” and describes 7 key principles of advocacy.
7 principles of advocacy
1.
Take responsibility: be a leader
2.
Learn: be an expert
3.
Think critically: be discerning
4.
Speak with authority: be proactive
5.
Document: be prepared
6.
Collaborate: be a team builder
7.
Educate: be a voice for your child
There is also information online that aims to support families to advocate successfully.
Special Ed Advocacy: 9 Rules of Thumb by Robert K. Crabtree, Esq.
Introduction
Because the stakes are so high, it is very difficult for parents of children with special
educational needs to advocate calmly and objectively for the educational and related services
their children need. Nevertheless, calmness, objectivity, and a third quality – patience for the
long haul – are the parents' most important tools in a complex and often frustrating process. In
the course of that process, here are a few rules of thumb I have found to be helpful to parents.
•
Build a reliable team around your child: Your team should consist of strong and
credible experts who know your child!
•
Learn the rules: Every state has its own rules and regulations, but all must comply
with the federal standards.
•
Don't over-rely on the rules: The art of negotiation.
•
Prioritise your issues: Understanding the importance of your child's needs.
•
Share information: The pros and cons.
•
Document your communication with your school system.
•
Understand 'least restrictive environment' (LRE)
•
Personality conflicts: How to keep from being distracted from the real issues.
•
Consider how each step would look to an impartial decision-maker: Steering the
straight and narrow path in the special education process.
For more: http://www.wrightslaw.com/info/advo.9rules.crabtree.htm
Autism Spectrum Australia (Aspect) ABN 12 000 637 267
Building 1, Level 2, 14 Aquatic Drive Frenchs Forest NSW 2086
PO Box 361 Forestville NSW 2087 T 02 8977 8300 www.autismspectrum.org.au
We recommend a collaborative approach first and foremost; hopefully this will result in on
going collaboration. Rarely, situations become very difficult (see newspaper article below).
In such circumstances, it may be helpful to have a professional Advocate who knows Policies
procedures and can support and represent you assertively.
See: Aspect list of advocacy agencies on the Aspect website
"We and you ought not to pull on the ends of a rope which you have tied the knots of
war. Because the more the two of us pull, the tighter the knot will be tied. And then it
will be necessary to cut that knot, and what that would mean is not for me to explain to
you… For such is the logic of war. If people do not display wisdom, they will clash like
blind moles…"
– Khrushchev reported by Robert McNamara, Fog of War (2003)
What other Parents say: We spoke to a broad range of parents in 2012 and asked them to
recommend key advocacy strategies. This is what they said:
Documenting, writing
things down, keeping
track of events
Expertise and awareness
Communication and
collaboration
Parents strongly recommended documenting a range of things:
“Document, categorise and file everything!” “Put everything in
writing”
“Document all meetings and confirm agreed support and actions
in writing”
“Keeping a diary of conversations helps a lot” “Make a diary to
remind to follow up”
“Obtain written notes from experts – carers pay more attention to
those – summaries with strategies are best”
“Ensure therapists document goals and then (down the track) ask
them how they measure progress”
“Follow up on what therapists say they will do!”
Families recommended developing and using expertise:
“Read, read, read”
“Engage specialists (eg. OTs, psychologists) to attend school and
provide guidance/advice/reports to school”
“ASPECT ‘presentation’ to school about ASD”
“Keep raising awareness – letters to neighbours” and “pamphlets
about autism in letter boxes”
Families recommended strategies to develop good
communication and collaborative relationships:
“Invest time and energy into establishing a collaborative
relationship – share research, evidence”
“Keep in mind your long term vision – a damaged relationship is
hard to repair”
“Communication – ask teachers what they want”
“Book a review meeting to check in how things have worked
(school counsellor) Have they put in place what they said? Feels
empowering”
“Speak the truth not your mind!”
Have “Team meetings”
“Husband did canteen duty at primary school once a month –
educated other parents about autism”
Problem solving
“Be persistent, not pushy”
“Think about what you need to say, make dot points and stick to
them”
“Know who to talk to at your schools and don’t be afraid to take it
to the next level”
It can be helpful to know what laws and standards are available. You can use these standards
to hold services accountable. Relevant information includes:
The Convention on the Rights of Persons with Disabilities is an agreement by countries
around the world to make sure that people with disabilities and people without disabilities are
treated equally. The Convention on the Rights of Persons with Disabilities was adopted on 13
December 2006. It is important to remember that the rights in this Convention are not new
rights. They are the same human rights recognized in the Universal Declaration of Human
Rights, the Convention on the Rights of the Child and other international human rights
treaties. The Convention on the Rights of Persons with Disabilities guarantees that these
rights are respected for people with disabilities. The Convention makes many promises. Its 50
articles clearly explain what these promises are.
http://www.un.org/disabilities/convention/conventionfull.shtml
The NSW Disability Services Standards
The ten NSW Disability Service Standards are a core part of service delivery for all
organisations in New South Wales. Everyone working in service delivery needs to be familiar
with the Standards. They are the benchmark by which funding is allocated to organisations
and form part of the monitoring process designed to improve service delivery. Therefore, it is
essential for organisations to understand what the Standards require in order to continue
delivering services. The standards relate to: Service access, Individual needs, Decision
making and choice, Privacy, Dignity and Confidentiality, Participation and Integration, Valued
Status, Complaints and Disputes, service management, Family Relationships, and Protection
of Human Rights.
http://www.mdaa.org.au/publications/standards/nsw_disability_standards_93.pdf
The Disability Standards for Education 2005 were formulated under the Disability
Discrimination Act 1992 and tabled in Parliament on 17 March 2005. They came into effect in
August 2005. The Standards clarify the obligations of education and training providers to
ensure that students with disabilities are able to access and participate in education and
training on the same basis as those without disability.
http://www.deewr.gov.au/schooling/programs/pages/disabilitystandardsforeducation.aspx
This article describes some of the challenges that may be faced. Although this example
relates to schools, challenges may occur in any environment.
Parents of disabled children rebel against suspensions
Andrew Stevenson July 7, 2011 Sydney Morning Herald
Parents are fighting back against schools suspending students with disabilities.
PARENTS of disabled students are taking the Education Department to court alleging
discrimination, saying their children are being punished for their disability by being suspended
from school.
One boy from Wagga Wagga, with a mild intellectual disability and emotional disorder, was
suspended three times for a total of 80 days as an eight-year-old. He is now 10 and his
mother last month filed a $50,000 damages claim against the department in the Federal
Court. His lawyer, Phillip French, the director of the NSW Disability Discrimination Legal
Centre, said the boy was effectively ''left with no education at all, not even home schooling''.
''We don't step back from the fact that this child had significant issues in the classroom which
challenged his teachers and the education system,'' Mr French said. ''But this is a very large
system with professional teachers and a capacity to draw on a range of services which would
have provided assistance.''
Complaints about suspensions are the most common reason why parents of disabled
schoolchildren contact the centre. Mr French estimates there are 30 to 40 live actions - before
the NSW Anti-Discrimination Board, the Australian Human Rights Commission or the Federal
Court - most of which allege unfair suspensions.
''There is a very grave problem in the treatment of kids with disabilities in the NSW school
system where they experience bullying, and harassment,'' he said. ''Very often these kids are
being teased within an inch of their lives, often they are subject to violence from other children
and [when they hit back] they get suspended.''
Julie Black says her 15-year-old daughter, who has moderate to severe intellectual disability
and displays challenging behaviour, is being discriminated against, having been suspended
six times since starting at Wauchope High School last year. Five suspensions were overturned following complaints from Ms Black that the school had not followed the Department's
procedures when suspending her daughter. An appeal against her daughter's most recent
suspension is under way. ''I am fed up with the department's suspension policies which
discriminate against children with disabilities,'' Ms Black said. ''This is unfair illegal harassment
of families who already struggle with the demanding role of caring for these special children.''
Her daughter was suspended last month for kicking a teacher's aide when, according to Ms
Black, she was inadvertently provoked. Despite this incident her daughter's communication
book on that day said she had had a ''nice day''.
Sonia Powazuk of Disability Advocacy said many more parents were complaining about
inappropriate suspension of disabled students. ''Schools don't seem to follow the proper
suspension procedures. We have clients whose children have been suspended and the
parents haven't even been given a letter providing reasons for the suspension,'' she said.
Nicole de Vulder, who runs a support group for parents of children with challenging behaviour
- said the constant suspensions ''do nothing but exacerbate'' the issue. ''Parents have left their
kids at home knowing that they will destroy the house, steal their things or roam the streets
and get into trouble but they need to work and have no alternatives. There is no help available
for these parents,'' she said.
A spokesman for the Education Department said principals were required to consider any
disability when suspending a student for misbehaviour. ''Except in circumstances where the
safety of students or staff may be an issue, suspension is generally only used where other
interventions have been unsuccessful,'' he said.
Tell us your experience: edu@smh.com.au
NSW Disability Discrimination Legal Centre http://www.lawlink.nsw.gov.au/adb
Disability Advocacy NSW http://www.da.org.au/
Read more: http://www.smh.com.au/nsw/parents-of-disabled-children-rebel-againstsuspensions-20110706-1h2p0.html#ixzz1RNWkXzQ8