The People with Disability Australia (PWD) E-Bulletin is a monthly email newsletter that contains news and views on disability rights issues in Australia and internationally. Subscription to the bulletin is open to members and any other interested parties.

As well as keeping up with disability news the bulletin gives details of various government inquiries. Some give the opportunity for parents/carers to give their own views, express opinions or share experiences and to attend public hearings. If you want to have your say it is a good idea to keep up to date with such information.

This month’s edition includes articles on:

• NSW Parliament inquiry into substitute decision making for persons with disability
• NSW Ombudsman reports on review of individualised planning in large residential centres
• Shelter NSW conference looks at the housing crisis in Australia
• Victoria’s Guardianship laws to be reviewed.
• Women with Disabilities (WA) Inc now has a website
• Assisting domestic violence services to better support women with disability
• Protest at Telstra bill payment fee
• UN experts call for enhancing the protection of persons with disability

Current and back issues of the newsletter can be downloaded from their E-bulletin page although, rather than having to remember to regularly go to the site, I find it more useful to subscribe to the email edition.

People with Disability Australia (PWD) is a national non-profit, non-government disability rights and advocacy organisation.

The site has published some interesting facts:

• Among the OECD countries, Australia is currently ranked a disappointing 13 out of 19 in employment rates for all people with disability.
• According to ABS figures, 20% of the Australian population, almost 4 million people, have a disability .
• About 2% (400,000) Australians have an intellectual impairment.
• 2.2 million people with a disability are of working age and a million of these are already in the workforce. More than one third are employed in professional, managerial and administrator roles
• Employees with disability actually have fewer scheduled absences than employees without disability as well as increased tenure.
• The number of students with disability enrolling in Vocational Education and Training (VET) has almost doubled in less than 10 years”, Dr Mark Bagshaw, Co-Chair, National VET Disability Advisory Taskforce.
• The Australian workforce is facing a major labour skills shortage, with a shortfall of 195,000 workers predicted from 2009 onwards

As well as providing information and facts, the advantages of employing those with a disability and developing accessibility for disabled customers are stressed. The arguments for doing so are compelling – "By realising human potential and addressing disability-related exclusion we will create a sustainable society. Taking advantage of this opportunity will result in far reaching benefits, not just for individual businesses, but for Australian society as a whole." (Opportunity p13)

IDPwD was established in 1992 by the United Nations General Assembly and is celebrated worldwide on 3 December each year.

The aim of the day is "to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life."

The international theme for this year is – Convention on the Rights of Persons with Disabilities: Dignity and justice for all of us". The theme reflects the entry into force in May this year of the Convention on the Rights of Persons with Disabilities and next weeks 60th anniversary of the Universal Declaration of Human Rights. The Convention on the Rights of Persons with Disabilities is a treaty that identifies the rights of persons with disabilities and the obligations on UN State members to the Convention to implement measures to promote, protect and ensure those rights. You can read a brief description or the full text of the Convention on the UN Enable site. Australia is one of the 136 current signatories to the convention and one of 41 who have currently ratified it. Australia made this declaration on ratification.

The Australian IDPwD site has details of events happening throughout Australia entry into force of the Convention on the Rights of Persons with Disabilities. In conjunction with the days events the 2008 winners of the Australian National Disability Awards will be announced at an awards ceremony in Canberra.

Diagnosis is the first step in accessing the services provided by the package, followed by the creation of a treatment and management plan. New Medicare provisions have been created to cover diagnosis, the development of a treatment and management plan and recommended therapies:

Medicare

There are two components to the Medicare funded services. Here is a brief run down::

    Diagnosis and Treatment Plan

• For children under 13, Medicare will give rebates for the assessment, diagnosis and the development of a treatment and management plan for PDD conducted by either a psychiatrist or a paediatrician. Included in this are provisions for consultations with 3 types of allied health professional: Speech Pathologists, Psychologists and Occupational Therapists. Rebates include up to four services by these allied health professional when assisting the psychiatrist or paediatrician with assessment and diagnosis. A GP’s referral is needed for the psychiatrist or paediatrician.
• There are also provisions for rebates for children under 13 who have already been diagnosed but do not have a treatment and management plan.

    Treatment

• Once a treatment and management plan has been developed, additional medicare rebates are available up until the child reaches the age of 15. This provides for up to a maximum of 20 services for early intervention treatment with one of the allied health professionals, if recommended in the treatment plan.

More detailed information about the Medicare component of the package is available at http://www.health.gov.au/autism or you can call the Department of Health and Ageing on (02) 6289 4297, or the Medicare Australia Patient Enquiry Line on 13 20 11.

Early Intervention

The Early Intervention provisions are being managed by the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) and involve:

• $12 000 in individual assistance will be provided for children aged six and under who are diagnosed with an ASD and who are not yet at school. This funding is to provide such early intervention services as one-on-one intensive activities and tailored group and individual programs. Families living in rural and remote areas may also be able to access an additional $2000. Families will choose the early intervention service that best suits their child from a panel of service providers currently being established by FaHCSIA. A list of service providers can be found on the FaHCSIA page Early Intervention Service Provider Panel. The list is not yet complete as the application process only began in September but the list will be updated as providers are approved.
• There are to be 40 Autism Advisors who will assist families and carers of children diagnosed with an ASD to access advice and information about appropriate early intervention services. Details of the organizations providing the autism advisory services can be found at Autism Spectrum Disorder (ASD) – Autism Advisors
• A national program of workshops, commencing February 2009 will assist families and carers to provide the most appropriate support for their child and inform on how to provide effective early intervention activities in the home. The workshops are being run by the Parenting Research Centre
• Six new autism specific child care centres are to be established (SW Sydney, Brisbane, Adelaide, NW Tasmania, Melbourne and Perth).
• 150 playgroups for children with ASD or ASD like symptoms are being created, called PlayConnect to provide play-based learning opportunities for children as well as information and social support networks for their families and carers. These are being set up by Playgroup Australia. To date, two PlayConnect groups have been opened (in Campbelltown and Wagga Wagga) with another 8 before the end of this year (Mackay , Toowoomba, Cairns in Qld, Canterbury, Blacktown in NSW and Maribyrnong, Banyule, Hobson’s Bay in Victoria). More information – The PlayConnect section of Playgroup Australia or call the PlayConnect hotline on 1800 790 335 or email the National Program Manager – Judith Keller jkeller@playgroupaustralia.com.au

More information about the Helping with Autism Package can be found on the FaHCSIA website – Helping Children with Autism (or you can phone 1800 289 177 or email asd@fahcsia.gov.au). The Raising Children website which already has a section on Children with a Disability is to be expanded in February 2009 to include ASD resources.

School Age Children – Postive Partnerships

The Department of Education, Employment and Workplace Relations (DEEWR) is implementing two aspects of the Helping with Autism Package to support school aged children with ASD: This involves:

• Professional development for teachers, school leaders and other school staff who are working with children with ASD.
• Workshops and information sessions for parents and carers of school aged children to assist them to work with their child’s teachers, school leaders and other staff.

The training is being run by the The Australian Autism Education and Training Consortium (AAETC) and is called Positive Partnerships. Workshops are already being run and parents/carers can register for them online – Parents/Carers Workshop Registration. Online workshops and training is also available on the AAETC site and a discussion forum is being developed . At present only one course is online – An Introduction to Autism. You must register on the site to gain access to the training. Registration and the Online Training can be accessed via the button found on the top right hand site of the Positive Partnership website pages

A child with Fragile X, would also have to have a diagnosis of a PDD to be included in the services available under the package.

I am starting off this series of articles on Australian Government provided payments and services with an overview of Centrelink Payments because of recent discussions on the subject in our forums. Specific payments are available for parents of children and adults with a disability and for adults with a disability as well as the more general payments available for when you are raising a child.

As the degree of disability varies in Fragile X syndrome, having a diagnosis of Fragile X is not enough on its own to be eligible for payments. An assessment from your child’s doctor will be required when applying for payments to ensure that he/she meets the eligibility criteria. For carers this is based on the extra amount of care your child needs.

Many Payments are subject to an Income Test or Income and Assets Tests – I have indicated whether this is the case beside each payment. Payments with nothing beside them are those which may be given if you already qualify for another payment. Details of the Income and Assets Tests can be accessed from Centrelink’s list of Payments subject to Income and or Asset Tests

Payments for Adults (aged 16 or over) with a Disability and their Carers

Overview – downloadable booklet

Payments and Allowances

• Disability Support Pension Income/Assets Tests
• Youth Disability Supplement – for people with disabilities who are under 21 years of age.
• Mobility Allowance
• Pensioner Education Supplement
  (once your child is 16 years of age) – provides additional help for Disability Support Pension recipients who undertake study.
• Health Care Cards

Payments for Carers of Adults with Disabilities

• Carer Payment Adult - an income support payment for people who cannot support themselves through participation in the workforce while caring for a child with a profound disability who has extremely high care needs. Income/Assets Tests
• Carer Allowance Adult - for people who care for an with a disability at home. May be paid on top of the Carer Payment No Income /Asset Tests
• Health Care Cards for both child and carer if eligible.

In addition to these payments children and parents may be eligible to the following – depending on which other pension or allowance they receive

• Pharmaceutical Allowance
• Telephone Allowance

Payments to help you raise children (including those without disabilities)

If you are not eligible to receive payments for caring for your disabled child because the degree of disability does not warrant it these payments are available to all parents who qualify because of low income levels.

• Family Tax Benefit Part A Income Test
  For parents or carers to help with the cost of raising children.
• Family Tax Benefit Part B Income Test
  For single income families and families with one main income.
• Parenting Payment Income/Assets Tests
  For parents or guardians to help with the cost of raising children.
• Child Care Benefit and Child Care Assistance page of mychild.gov.au Income Test
  For families to help with the cost of child care.
• Baby Bonus Income Test
• For your child – Youth Allowance for a young person who is studying, undertaking training or an Australian Apprenticeship, looking for work, or sick.
• Newstart Allowance – If you are unemployed, Newstart Allowance helps you while you are looking for work and allows you to participate in activities designed to increase your chances of finding work. Income/Assets Tests
• Remote Area Allowance gives you extra financial help if you are getting income support and you live in a remote area.
• If you are under 21, you may also be eligible for the Youth Disability Supplement.

Additional Resources

Centrelink Site

Family Assistance Office

If you want to research the criteria more fully you can check out the Carer and Disability section of the Guide to Social Security Law.

The National Welfare Rights Network (NWRN) The NWRN as well as advocating for rights provides casework advice and assistance to individuals to ensure they can “exercise their rights, fulfil their obligations, meet their responsibilities and maximize their entitlements under the Australian Social Security system”. Information available from their site:

• Factsheets to assist individuals with Social Security or Centrelink problems.
• Relationships & Centrelink” booklet This booklet aims to assist people who are receiving income support payments from Centrelink. It provides information regarding a person’s rights and obligations when being investigated for an alleged marriage-like relationship, by Centrelink, and explains who is considered to be a “member of a couple” for Social Security purposes.
• If you want to get into the real depths of the provisions the 6th edition of the Independent Social Security Handbook available in hard copy or by subscription online – this may be available in your local library. This handbook provides information about Social Security and Centrelink to assist service providers working with clients who are receiving payments.

(Post updated to include NSW and Queensland April 2009)

The Companion Card has been developed to promote the existing right of people with a disability to fair ticketing. They are issued to a person with a disability who has a lifelong need for attendant care support. This is to help them participate in community activities and attend venues where normally two attendance/entrance fees would be required – one for the person with a disability and one for their carer.

When purchasing a ticket to an event or activity from a business affiliated with the Companion Card, people who hold a Companion Card are issued with a second ticket for their chosen companion at no charge. The affiliated organisations absorb the costs of this second ticket. There are a wide range of affiliates, covering such areas as public transport, certain sport and recreational venues, leisure activities, national parks and some cinemas and theatres.

Cards can be used in any venue that supports the program in and outside of your own state. If you see the sign above you know you are able to use the card.

To find out more about the Companion Card in your state please refer to the main Companion Card Website or the links below:

• NSW – Where you can use your Companion Card in NSW:  Affiliates Page
• South Australia Where you can use the Companion card in SA: Key Affiliates page
• Tasmania – Where you can use the Companion Card in Tasmania: downloadable list of affiliate venues in Tasmania
• Queensland Lists of places where you can use your card in Queensland: Browse by Category Page
• Victoria Where you can use your Companion Card in Victoria: Key Affiliates Page
  
• Western Australia Their current newsletter is available for viewing from the home page or you can email wa@companioncard.asn.au with your details to get the newsletters emailed to you. The newsletter is designed to help you find shows and events accepting the Companion Card across Western Australia. Upcoming in November: An Evening on the Green – John Mellencamp, Andre Rieu, Escape to the Park – feat. The Cruel Sea and Ben Lee. Where you can use the Companion Card in WA : Key Affiliate page

There are many services available and it can seem like a maze when you are trying to find your way through them all; information can be confusing and difficult to understand. After 18 years of caring for a child with a disability I have learned to find my way through this maze but it was not easy to begin with. On top of dealing with a child’s disability, its diagnosis, treatment, therapy and the every day challenges it brings us, the process of finding out about services and payments can be stressful for parents; it certainly was for me before I tapped into support resources. There is plenty of help and support on hand. Please do not be afraid to use it as it can really ease the journey of looking after a child with a disability.

Where to find support and information

• Commonwealth Carelink Centres are information centres for older people, people with disabilities and those who provide care and services. Centres provide free and confidential information on community aged care, disability and other support services available locally, interstate or anywhere within Australia. . Free call 1800 052 222, Carelink Centre Locations
• Telephone Centrelink on 13 27 17
• Our forums which provide support, information and experiences from those caring for a person with Fragile X Syndrome
• Our website link pages – Support groups and Organizations, Advocacy and Online Support

This series of articles will consist of information on:

• Centrelink Payments
• Medicare Payments
• Respite Services
• Education
• Adult Services
• Employment
• Other Government Services

Departments responsible for the various disability services:

Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) – provides services and assistance that help people with disabilities to participate actively in community and economic life, access a responsive and sustainable safety net, and develop their capabilities. To keep up to date with FaHCSIA news you can subscribe to disAbility e-news, a regular sector update to keep you informed about FaHCSIA disability issues. Back copies are available on this page too.

Department of Health and Ageing

Department of Education, Employment and Workplace Relations

Payments and Allowances Centrelink and the Family Assistance Office

Office of Early Childhood Education and Child Care

Other Government resources for Information

mychild.gov.au a new online portal for information on early learning and care launched 22nd October 2008

Raising Child Network – funded by the Australian Government

If there is anything in particular you would like us to cover on this topic, please let us know by leaving a comment below.

Included on the site is a section on Raising Children with Disabilities which covers the topics:

• Family Life
• Play, Health and Fitness
• Disability Rights and the Law
• Services and Support
• Working with Professionals
• Film Clips
• A-Z Disability Reference

Other sections of the mychild.gov.au site:

• Caring – covering child care options, government assistance for childcare and related information.
• Learning – Information on Government initiatives in Early Learning Years
• Raising Children – up-to-date, research-based material from birth through the school years. Topics include: child development, behaviour, health, nutrition and fitness, play and learning, connecting and communicating, sleep, safety.
• Wellbeing – Australian Government initiatives for your child’s health including the Healthy Kids Check Initiative and Immunization
• Supporting -
  includes:
  • The Raising Children Network
  • Children with Special Needs
  • Inclusion and Professional Support Program
• Frequently Asked Questions
• details of local child care services, providers, their facilities, services and fees

Jocelyn requested further information from the Department of Health and Aging and the picture became clearer. The reason for information being on various sites is because “Helping Children with Autism” is multi faceted. It involves services provided by the Department of Health and Ageing, the Department of Families, Housing, Community Services and Indigenous Affairs and the Department of Education, Employment and Workplace Relations. The package includes:

• Medicare rebates for specified diagnosis and treatment plans for children with PDD up to the age of 13
• Specific Medicare rebates for treatment of PDD by allied medical professionals for children up to the age of 15 – Speech Therapists, Psychologists and Occupational Therapists.
• Training for teachers,
• Education and support for parents and carers.
• Increased access to early intervention programs for children up to the age of 6 years old.

What are the implications for children with Fragile X Syndrome. A diagnosis of Fragile X Syndrome alone is not enough for inclusion in the Helping Children With Autism services. Fragile X is not a pervasive developmental disorder (PDD). A child with Fragile X, would also have to have a diagnosis of a PDD to be included in the treatment and early intervention programs.

What are the PDDs? They are a group of five disorders, characterized by delays in the development of multiple basic functions including socialization and communication. These are:

1. Autism
2. Rett Syndrome
3. Childhood Disintegrative Disorder
4. Asperger Syndrome
5. Pervasive Development Disorder not otherwise specified (PDD NOS)

This classification used by the program is taken from a manual published by the American Psychiatric Association called the Diagnostic and Statistical Manual of Mental Disorders (the DSM-IV-TR)

Because of the varying nature of symptoms and the degree they are affected, many children with Fragile X do not fall into the above criteria. Some children with Fragile X are also diagnosed with Autism so they would qualify for the program. Although Fragile X is sometimes considered an Autism Spectrum Disorder and many children have some autistic symptoms, they do not fit the full criteria for Autism itself.

People affected by Fragile X may be eligible instead for medicare rebated treatment under the classification of Chronic Disease Management Items. This program is coordinated by GP’s and may be available to patients who have complex and chronic health needs, needing at least three health care providers e.g. GP, Occupational Therapist and Speech Therapist.

I will talk more about the Helping Children with Autism Package and the Chronic Disease Management plan soon.

Under the amendments, it is unlawful for an employer to unreasonably refuse to accommodate a person’s responsibilities as a parent or carer. The changes apply in relation to job applicants and existing employees, as well as to to contract workers and partnerships.

The Act provides some examples of how these new rules can be implemented which include

• working part-time
• job sharing
• working from home for all or part of the working week.
• starting and finishing earlier or later

Practical guidelines to inform employers and employees about these changes and what they might mean are contained in the document Building eQuality in the workplace:Family Responsibilities – Guidelines for Employers and Employees which is available for download on the Victorian Government Human Rights Commission’s website. Carers Victoria helped to develop these guidelines and members of Carers Victoria will be sent a copy of this with their next newsletter.