Tjina Maala Message Book For Families

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STORI ES AND SUPPOR T FOR C ARERS OF PEOPLE WITH A DISABILIT Y

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Message Book

Acknowledgements We have written this book to answer some of your questions. Every person is different, each with his or her own unique strengths and particular challenges. Because each person is different, the information in this book is presented in a general way. If you have any queries about a particular person with a disability, please discuss these with a health professional.

We would like to thank the families who participated in the Storytelling Circles with special mention of the Tjina Maala ‘Community Reference Group’ members Wendy Dimer and Penny Evans.

Acknowledgement to Community Engagement Officer, Margaret Gidgup, who spent a year in Kalgoorlie talking with Aboriginal mothers, fathers, grandparents and young people with a disability and hearing their stories. Names 2

Message Book for Families

have been changed in the story quotes of this publication to protect privacy. Appreciation extended to volunteer student, Maira Braga, for her assistance with this resource.

Ongoing thanks to Community Engagement Officers Deanne Williams and Lenice Forman for their invaluable contributions.

The portraits used in this booklet have been provided by talented photographer Belinda Mason with consent from each individual

featured. Many thanks to Gayle Rankine, John Baxter, Jake Briggs, Maree Kalkeeyorta and Yami Lester for sharing their images. For more of Belinda’s work visit www.unfinishedbusiness.net.au.

Many thanks are extended to Kalgoorlie Aboriginal artist Ashley Fitzgerald for his Kalgoorie paintings ‘Kalgoorlie Bush After Fire’ and ‘Hunting Ground’ featured on page 3, and his contribution within the disability sector.

Stories and support for carers of people with a disability

Gratitude to Aboriginal artist Penny Evans for her artwork on the Pika Wika Kuthupa logo. Pika Wiya Kuthupa is Wongi for ‘not sick, different one’. The logo illustrates the different journeys that families go on. The Tjina Maala Centre was established to help Aboriginal families caring for young people with disabilities along their journeys.

Readers are warned that some images may include pictures of deceased persons.

Contents

‘Hunting Ground’ by Ashley Fitzgerald

‘Kalgoorlie Bush After Fire’ by Ashley Fitzgerald

Families share their stories.............................................................................. 5

Who can help my family? ............................................................................ 20

What is disability? ............................................................................................. 13

Tips and suggestions ..................................................................................... 22

Different ways people can respond to disability ........................ 14

Working together ............................................................................................. 24

Rights of people with disabilities in Australia ............................... 14

Making the most of appointments and meetings .................... 25

What is The National Disability Insurance Scheme (NDIS)? . 16

Making decisions .............................................................................................. 26

What funding is available? .......................................................................... 18

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‘ STANDING TALL’ photo by Belinda Mason

“

Being an Aboriginal, I think it gives a great deal of pride and sense of purpose as well. So a lot of the work I do is going out into the community and talking with people, whether it be school groups or senior citizens. Making those connections in the first place and saying, well yes, there are a lot of good strong Aboriginal people around, they have got their head in the right place and they can not only have a good in-depth understanding of the past, but also look forward to the future as well as signal that there are brighter tomorrows, and as a collective group, that we can change the attitude of people to our kids and grandchildren and nephews and nieces to give them better opportunities at life than we had, I suppose … that’s important.

“

JOHN BAXTER, LATJA LAJA / NARUNGGA MAN BOARD MEMBER, FIRST PEOPLES DISABILITY NETWORK BOARD MEMBER, RECONCILIATION VICTORIA

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Stories and support for carers of people with a disability

Families share their stories…

Aboriginal mothers, grandmothers, grandfathers and carers were asked – when did you first notice something was different? Names and details have been changed to protect identity.

“Got about the fourth week, and they said… we’ll do an, ultrasound, and so I went across to do the ultrasound… I went across, then this little girl was doing [the ultrasound], then she’d disappear then and then she’d come back, another woman would come back then [ultrasound], went then come back then [ultrasound], I’m thinking what’s going on here, you know I’m laying there, and then the older woman, the last one that came back came and she says ‘oh I think this is hydrocephalus… and I’m lying there thinking, what’s hydrocephalus, then they disappeared again and left me laying at the bed… and I’m thinking ‘Goodness, what’s hydrocephalus?’”

“Not quite sure the word but its like um, I don’t know what word is but it was like he was born with like slow development sort of, tiny, premature he was born a bit early he’s had ear trouble with his ears all his life. They said that he wouldn’t be able to walk cause it’s very flexible with his hands and things like that the moment. Yet Thomas goes to speech therapist, still goes there.”

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Families share their stories…

Many non-Aboriginal families have similar stories about the birth and diagnosis of their child. Families often feel scared, worried or guilty.

These are stories from ‘Focus on Fathers’ – Stories of Rural Fathers, a publication of Ability Centre.

“When he was born, I knew straight away something was wrong… one eye was smaller than the other… they said that’s not a problem… I took Janet and the baby home the next morning (home was about ten hours from Perth). … the clinic sister comes after a week …. and she saw his eyes and had a panic… referred to a doctor some 70kms away and then he was flown to Perth… I was just in panic mode I didn’t know what was going on. … they said that Charlie is blind and that shattered me, my father was blind… and then we realised something was wrong with his hand.” “… early stages you are not thinking right, everything’s fuzzy.

See other dads in the hospital and see how worn out they looked with rings under their eyes and think WOW am I that worn out, I know where you are coming from mate. Initially thought it was my fault because I suggested we move to New Zealand and I picked up the property with the sprayers flying overhead. Takes a while to realise it is not your fault, when you are feeling fragile you have to figure that out for yourself. ”

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“The staff were terrific the nurses and stuff, and the doctors were the ones who were cagey… doctors were there, but I didn’t really know what to ask them… felt it was harder on Jenny than myself ...had to wait till she was nine or ten days old before they actually told us. (Jenny) told me on the phone, I did not suspect, it was devastating. They kept doing tests but didn’t tell us anything so I wasn’t expecting anything to be wrong… and then hmmm after I found out I just went to pieces for a while and kept on crying and stuff. Kept to myself.”

Families share their stories…

Aboriginal families share their experiences...

“Yes he’s very fast and keeps an impression on everybody that he meets, like he stands out, he’s one of a kind, so everyone remembers him and stuff.”

Your child is one of a kind. Everyone has different strengths and challenges.

Explore your child’s abilities.

“I help take care of him when like she can’t get to the shops or cause we can’t take him out in public because he’s just, some places we can’t take him.”

Doing simple things, like going shopping, can be difficult. It’s okay to ask for help.

“Yeah she had tubes and all sorts and everything, the first 24 hours was critical; and she’s 16 now, and she told me, a couple more hours and I wouldn’t have had her.”

Specialists like physiotherapists, occupational therapists and speech pathologists can help your child write, read and speak. Getting help early when your child is growing and exploring is best.

Many carers feel overwhelmed when their child gets a diagnosis. Having different emotions is normal, find someone you can talk to, family, friend or professional.

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“She was really thin she doesn’t know how she’s gonna later on in life, since she was 4 I was taking her to an OT, a speech pathologist, I’ve been trying to get on things.”

“He was diagnosed with Down Syndrome, and then I looked after him then. I took him to a doctor because he couldn’t hear me properly; he’s got grommets in his ears. Then he’s had tests done to say he’s got Autism, now I really don’t know what to do, because I’ve never looked after a kid, a child like that before, and he’s just starting to walk, he doesn’t talk at all, you know.”

w h e n desu

Getting help quickly can make a life of a difference. You can go to emergency at your local hospital or Aboriginal Medical Service.

“I didn’t know about these places. Now I’m involved with disabilities and the hospital and hearing people and learning everything, I’m trying to do things to help her.”

“I’ve told many of the teachers here, this is what happens so look after him, but they ring me up, I got to walk to the school explain myself again.”

The journey can feel difficult, but over time you will become stronger. Take little steps at a time.

Many teachers don’t know everything about your child’s different needs. You can talk to your child’s therapists and ask them to work with the school.

“I was in the women’s refuge for about 2 months, 3 months and they’re the ones that showed me the direction, nobody else had done all them things.”

Sometimes you might feel like there is no one to help you. There are lots of services for carers, people with disabilities, women, men and Aboriginal services.

“They made it [the appointment] down in Perth so had to go down to Perth to take the boys. They can do it here but I think they may have beenfully booked, so that’s why had to take them down. And it takes a while for them to get a referral to see the doctor.”

Appointments and meetings with specialists can take a while, and families might have to travel to Perth.

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Families share their stories…

Stories and support for carers of people with a disability

“With my daughter, she was 6 months old, she was a nice fat baby and within two days just like that, she was skinny, I mean her eyes were sunken in, and I rushed her to the doctor.

I didn’t have huge huge concerns, but then it started to get to, he was three; and we had the same behaviour going on, he was three, but it was like he was one and a half or two or something.

So every year he was not getting at the right stage that he needed to be.”

Many mums know when something isn’t right. If you think baby isn’t well – get help quickly. You can ask your family doctor or child health nurse.

‘MOTHER’ photo by Belinda Mason

I’ve got my daughter, who was diagnosed with cerebral palsy since birth and my boy, who is 13 years old. He just returned from the boarding school because he was too homesick. He was selected to go Brisbane Boys’ College, but he said “Mum don’t leave me here.” I gotta go back home, so if someone was there to take care of my girl for me, I would have stayed behind for my son to get a better education and to understand what it is like outside of here. There’s a big world out there.

“

“

MAREE KALKEEYORTA APALECHE CLAN, WIK LANDS

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w Families share their stories…

“So we waiting a year for an Autism test, and they did the test and got up and told me he doesn’t have Autism, he’s got speech delay and sensory disorder.”

Waitlists mean waiting for disability diagnosis may take a long time. Even without a diagnosis you can help your child by joining a playgroup. Look after yourself too – find a local parent support group.

“She’s (the Health Worker) good. Every time I see her she helps me, she guide me in the right direction, everything that I need, she’s good.”

There are different types of health workers who can help – Community Engagement Officers, paediatricians, disability workers, advocates and therapists from Child Development Centres.

“In Thomas’ situation, the best time to give them all the right tools now while their little, because he can’t cope without an adult, so he needs the help now.”

A child’s brain develops the most between 0 to 6 years old. Getting help in the early years is vital.

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Stories and support for carers of people with a disability

“Justin started here last year and did one term and he’s here. I’ve seen a huge progress, we’ve got more communication um he’s doing sign language and basically the school and my family is getting Justin to where he needs to go.”

Schools with Education Support Centres can help your child with a disability. Education Assistants work closely with each student to give extra support in the classroom.

“They work on the ipads and that now, and oh he’s brilliant on that. He’s so smart he just needs that help, that extra help to do what he needs to do.”

There are resources and devices that can help your child in school – like ipads, visual timetables, communication tablets.

“He’s got sensory issues, you know to deal with his senses. They give me ideas to help him with different textures of materials he likes to touch and stuff.”

Some children are sensitive to noise, light and temperature. Occupational Therapists can help children with different sensory needs.

“You got to do it yourself… I mean you can go up and down but, I dunno, it’s very hard.”

Sometimes you might feel alone. Remember, you can get help. Along your journey different people will join and hold your hand. Start where you are, do what you can.

“We didn’t get any support or anything and they look at us like we’re bad parents, and he was a naughty child with bad behaviour and how they sort of like single out the ones that are always running a muck.”

Surround yourself with positive people and people who build you up. Don’t let negativity eat into your life.

Remember:

• • • • • •

You have the right to ask for help There are people and services that can help It’s okay to ask for help, don’t be ashamed You may be able to get financial support to look after family members with a disability You might need to ask more than one service, and ask more than once You are not alone

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‘NGARRINDJERI WOMAN’ photo by Belinda Mason

“

Our Indigenous people of Australia are 3 per cent of the total Australian population. But of that 3 per cent the last statistics reveal that at least 50 per cent is affected by some form of disability. So it’s very bad numbers for our people. You must remember there is no word for disability in any Indigenous language. So a lot of our people haven’t connected with agencies, one, because of colonisation and the fact that you have the ‘Stolen Generations’, it’s the fear of having a child removed from them and growing up institutionalised. I am extremely passionate about it, but now I am here, fighting the fight, fighting the fear, fighting the racism. We face a double discrimination. Discrimination because of our disability and because of our race. Racism is based from ignorance I say. But having a disability, you get a double whammy.

“

GAYLE RANKINE, CHAIRPERSON, FIRST PEOPLES DISABILITY NETWORK

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Stories and support for carers of people with a disability

What is disability?

A disability is something that limits a person in doing normal daily activities. People with a disability may include people who:

•

use a wheelchair to get around, or have problems walking find it difficult to learn or understand things problems with vision or hearing

• •

There are many reasons for different types of disabilities.

For example:

• infection during pregnancy • difficult or early birth • genetics • environmental factors, or • accidents such as car crash or near drowning

Some information from ‘What is disability’ and ‘Different way people can respond to disability’ has been summarised from http://www.healthinfonet.ecu.edu.au/uploads/resources/3050_reviews_oneill.pdf

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Different ways people can respond to disability In many Aboriginal and Torres Strait Islander communities:

• •

a disability is viewed as not sick, just different wellbeing is viewed holistically – having a strong spirit, body and mind there is no Aboriginal word for disability disability may be seen as pay-back for past wrongdoing all children are cared for and treated the same

• • •

Many people view disability in different ways. Some families experience feelings of shame, pity or may over protect their child. Some families may hide their family members away from services because of fear and mistrust.

In Australia most people with a disability receive support from their family and friends. However, people with a disability are also supported by the government, schools and community-based organisations.

It is normal for a family, to experience shock, disbelief, grief or sadness when their child is born with a disability. Parents sometimes question ‘who is to blame?’. Often no one is to blame.

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Common emotions experienced by parents may be:

• • •

guilt (‘why have I deserved this’ or ‘what did I do wrong?’) shame or fear (‘what will other people think?’) anger (‘is this punishment?’).

Parents may experience fear or uncertainty:

• • •

‘what do I do now?’ ‘who is going to help me?’ ‘is there anything that I can do to help my child?’

Rights of people with disabilities in Australia In Australia people with disabilities have many human rights. Rights refer to the way people should be treated. There are many different categories of rights; for example human rights or disability rights.

Disability rights ensure that people with disabilities are treated the same as the rest of the community. There are two main Acts in Australia for people with disabilities:

• •

The Disability Services Act (1993) The Commonwealth Disability Discrimination Act (1992)

Stories and support for carers of people with a disability

‘MARALINGA’ photo by Belinda Mason

In the 1950s there was British Government and the Australian Government made an agreement to have bomb testing in Australia. Not far from here. I was only a little kid. They were working there, testing the bombs. The first one when they let it go was called Totem 1. We heard it here, loud and clear, and felt the ground shake. We seen the radiation fall out over our camp. It was moving very quietly and very deadly. After that I went blind in the right eye straight away and on the left I had some sight left.

“

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YAMI LESTER ELDER, YANKUNYTIJATJARA COUNTRY

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What is The National Disability Insurance Scheme (NDIS)?

NDIS is a system to help people with disability, their families and carers.

What does the NDIS do?

Individualised funding may be provided to help with therapy, support services (such as giving carers a break) and equipment (such as wheelchairs).

1. Provide information 2. Offer individualised plans 3. Link families to disability supports and services 4. Encourage inclusion in community and access to services 5. Help disability service providers offer better services 6. Gives people with disability choice on how to spend their funding

The aim of the NDIS is to help the person live a meaningful life in their community.

Why is the system changing?

NDIS funding can help people with disability and their families to access services and supports.

Some information from www.ndis.gov.au www.disability.wa.gov.au and www.fightingchance.org.au

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A national system will replace the eight separate State/Territory funding schemes with one national scheme. The old Australia welfare and charity model of disability funding will be replaced by an ‘insurance’ model. An ‘insurance’ model gives people with a disability a legislative guarantee of funding for ‘reasonable and necessary’ support. This model give eligible people individualised funding packages.

Stories and support for carers of people with a disability

What is ‘reasonable and necessary’ care?

If eligible, ‘reasonable and necessary’ supports include services that help you to: • • • • •

achieve your goals become as independent as possible develop skills for day-to-day living participate in the community work and earn money

Who will be eligible for NDIS? Eligibility depends on: • age (generally you have to be aged between 0 – 65 years) •

disability need (you will be assessed on your ability to communicate, interact socially, learn, move safely around your home and the built environment and organise your personal care)

• early intervention

NDIS in WA In Australia, NDIS was introduced in July 2013. In WA, there are two trial sites – the Commonwealth trial and the State Government trial. The Commonwealth NDIS trial is in the Perth Hills. For information contact the National Disability Insurance Agency on 1800 800 110 or www.ndis.gov.au.

The WA State Government is also running a trial called the WA NDIS My Way. It is in the Cockburn/Kwinana area and the Lower South West and Hills.

Contact 1800 996 214 or email MyWay@dsc.wa.gov.au or www.disability.wa.gov.au/wa-ndis-my-way/wa-ndis-my-way To be ready for NDIS and WA NDIS My Way, it is important to get as much information as you need. Tjina Maala Centre can help with information and to help you choose from the different services available.

For help linking in with these services and funding Community Engagement Officers at the Tjina Maala Centre can help answer questions (see back of booklet for contact number).

Everyone is different, so talking to someone about your family situation can be helpful.

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What funding is available?

Centrelink will not be responsible for administering NDIS funds. The National Disability Insurance Agency (NDIA) will distribute NDIS funds. Centrelink, Medicare and other funding scheme have payments for people with disabilities. Most of these payment schemes will be replaced by NDIS in the future.

Centrelink

1800 050 004

You or your family may be eligible for one or more of these payments: Disability Support Pension, Sickness Allowance, Mobility Allowance and Pensioner Education Supplement for people over 16 years. Other payments are Child Disability Assistance Payment, Youth Disability Supplement, Carer Payment, Carer Allowance and Carer Supplement. www.humanservices.gov.au

Better Start for Children with Disabilities

1800 242 636 Helpline: 1800 778 581 WA Support: 1800 998 214

This funding is for children 0 – 6 years, with the following diagnoses: cerebral palsy, deafblindness, Down syndrome, fragile X, hearing impairment, visual impairment, Prader-Willi syndrome, Williams syndrome, Angelman syndrome, Kabuki syndrome, SmithMagenis syndrome, CHARGE syndrome, Cornelia de Lange syndrome, Rett’s Disorder, Cri du Chat syndrome; and microcephaly.

Families can receive up to $12,000 to help pay for early intervention service like audiology, occupational therapy, orthoptics, physiotherapy, psychology and speech pathology. www.betterstart.net.au

Helping children with Autism

1800 636 427

This funding is similar to Better Start funding, for children 0 – 6 years with Autism. www.health.gov.au/autism

Medicare

Concession and health care cards

Concession and health care cards may entitle you to concessions that make it less expensive when you use certain health care services, or buy prescription medicines.

Helping children with Autism item

Medicare items are available for children with Autism. Children under 13 years can get up to 4 sessions to help with assessments/ diagnosis. Children under 15 year can get up to 20 treatment sessions from psychologists, speech pathologists, occupational therapists, audiologists, optometrists, orthoptists or physiotherapists. The treatment sessions must be part of a management plan written by a paediatrician or a psychiatrist. Your child’s plan must be in place by their 13th birthday.

Chronic medical condition assistance

There is financial support available if you have a chronic medical condition that needs treatment by a doctor or specialist. www.humanservices.gov.au

1800 794 909 Wanslea (Department of Local Government and Communities)

This allowance is for children living with their grandparents where the grandparent is NOT receiving a foster allowance. The scheme provides: $400 for the first grandchild, $250 for each subsequent grandchild. A new application is required each year as family situations frequently change. http://www.wanslea.asn.au/children-and-family/grandcare/grandcarers-support-scheme/

Grandcarers Support Scheme

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* Families can receive both State and Commonwealth/Federal continence funding at the same time.

Incontinence Pad Scheme (IPS) *

(State government funded)

1300 788 855

Continence Management and Support Scheme (CMASS) *

1300 787 055 (State government funded)

Provided via Silver Chain (or referral by your GP), funding is available for adults over 16 years. Silver Chain can provide information about eligibility and can provide a continence subsidy up to $490 a year. www.continenceandyou.org.au

Continence Aids Payment Scheme (CAPS) *

1800 33 00 66

Funding is available for children over 5 years of age. This money is paid into the family bank account. www.bladderbowel.gov.au

PMH Goldfields Family Assistance Trust

9021 3211 Goldfields Family Assistance Fund

Financial assistance for travel and accommodation costs is available from the Rotary Club of Boulder. Families are asked to enquire about their eligibility before claiming funding for travel. When travelling, always keep receipts for travel and accommodation. http://www.pmh.health.wa.gov.au/linc/financial_and_practical_help/rural_families.htm

Patient Assisted Travel Scheme (PATS)

9080 5681 (Kalgoorlie) Royalties for Regions

PATS provide a subsidy towards the cost of travel and accommodation for eligible patients. It is for patients travelling long distances for specialist medical appointments at Princess Margaret or Royal Perth Hospitals. http://www.concessions.wa.gov.au/Concessions/Pages/Patient-Assisted-Travel-Scheme-%28PATS%29.aspx http://www.wacountry.health.wa.gov.au/index.php?id=pats

Taxi Users’ Subsidy Scheme (TUSS)

1300 660 147

TUSS provides taxi travel at a reduced rate for people who have a severe permanent disability that will always prevent them from using conventional public transport services. http://www.transport.wa.gov.au/mediaFiles/taxis/TAXIS_P_TUSS_ApplicationForm.pdf

Hardship Utility Grant Scheme (HUGS)

9222 2739 9222 2657 9222 2772

Continence funding can help with continence products for assistance with bladder and bowel problems. Your family can order continence products from Independence Australia. This Incontinence Pad Scheme (IPS) scheme is available for children 3 – 16 years. www.independenceaustralia.com

(Federal government funded)

subsidies@transport.wa.gov.au Department of Transport

hugs2@cpfs.wa.gov.au Department for Child Protection and Family Support

HUGS is a State Government scheme that provides financial assistance to people experiencing financial hardship to avoid disconnection of their electricity, gas or water supply. https://www.dcp.wa.gov.au/ https://www.dcp.wa.gov.au/servicescommunity/Documents/HUGS%20A4%20poster%202013.pdf

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Who can help my family?

Child Health Nurses

Aboriginal Health Workers

Community child health nurses are registered nurses with experience working with babies and young children. They can assess baby and child health and development, provide ongoing support and give you information (e.g. immunisation). They can refer you to Aboriginal Health Workers, speech pathologists, occupational therapists, physiotherapists, social workers and psychologists.

Aboriginal health workers can help support good health from before birth to growing old. For baby, they can check on weight, growth, development, ears, skin and immunisation. Other checks include Blood Pressure, Blood Sugar and Urine Tests.

Community Engagement Officers

Speech pathologists can help with communication, speech, language, reading and spelling. They can also help with eating and drinking when people have problems swallowing food and drink.

Community Engagement Officers are the Aboriginal workers who know information about disability. They can help find services in your area, and can meet with you and other services if you want some support during appointments.

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Speech Pathologists

Audiologists Audiologists test hearing and assess hearing disorders. They can help fit hearing aids and other devices.

Stories and support for carers of people with a disability

Who can help my family?

Orthoptists

Respite workers

Orthoptists are healthcare workers who specialise in eye care and vision disorders. Early detection through regular check-ups is the best protection against vision loss and sight problems. Orthoptic treatments may help relieve symptoms and improve vision.

When you need time out and a break, respite workers can help care for you and your family. Respite care is when another person cares for your child. It can be for a few hours, a night or two, the weekend, a week or even longer.

Occupational Therapists

Social Workers

An occupational therapist or (OT) can help your child with everyday activities like play, handwriting, toileting, dressing, eating and sleep. They can also help with sensory issues like problems with light, noise, touch and temperature.

Social workers help support families in many ways. They can support families when there are stressed and help put you in touch with other services like accommodation, financial or legal assistance.

Physiotherapists Physiotherapists (physios) can help your child with movement, for example, sitting, crawling, walking or running. Both physiotherpists and occupational therapists can help get your child walkers or wheelchairs.

Psychologists Psychologists check on a child’s overall development and can give advice on the child’s learning strengths and weaknesses. They can assist with mental health difficulties (like anxiety and depression), dealing with loss and grief and also help with relationship problems. Psychologists may be able to help other people in the family like carers, brothers and sisters.

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Commonwealth Respite and Carelink Centre What do they do?

Tips and suggestions

• • • • • • •

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Bring a support person, like mum, dad, brother, sister or your friend Talk about what is happening, it may be good for you to share with someone you can trust Remember, you don’t need to make all of the decisions at the same time Remember you can ask for help, try to be clear about what you need It is okay to let others, outside of your family, help It is okay to take some time for yourself Think about how to you can keep yourself healthy and strong

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CRCC provides free and confidential information on community aged care, disability, mental health and other support services locally and Australia wide. CRCC also have funding to arrange respite for carers who need to take a break from their caring role.

Who can I talk to?

1800 052 222

Kalgoorlie Office, 9022 4427

Goldfields Coordinator (via Silver Chain) Lotteries House 42 Wilson Street, Kalgoorlie

‘SOUL DEEP’, photo by Belinda Mason

I feel like being an aboriginal with a disability is a tough road on both paths where I’m eternally burning to take the fight and let the world recognize the true meanings of what it is to have a disability, to be indigenous and the combination of both. My Aboriginal heritage comes from the Kamillaroi tribe and comes from the Wonnarua tribe. My Pop went through the assimilation process of the stolen generation. The hardships he went through has helped shape the mould of me as a person. Having an acquired disability of my nature of being a c-5,c-6 incomplete quadriplegic so far has been a tough road not being able to function physically how I used to and the stigmatic ignorant discrimination from people that comes with having a disability but a lot of positive motions and new doors have opened where the old ones have closed with great support from my fiancée, family, friends and work colleagues gives me positive perpetual motion to make a difference and to eradicate discrimination, ignorance and ambiguity.

“

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JAKE BRIGGS, WONNARUA AND KAMILAROI MAN CHAIRPERSON, ABORIGINAL DISABILITY NETWORK NSW

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Working together 1. You can talk with health workers and let them know what is important to you and your family 2. You can let services know your preferences for meeting times and locations e.g. at home, at school or at play group 3. You can let services know what your child likes doing e.g. activities, hobbies 4. If it helps, you can write down questions for health workers or keep a checklist 5. You can let health workers know how you want to be informed (e.g. face-to-face or telephone) 6. You can ask services about what options are available before you make a decision

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Message Book for Families

Stories and support for carers of people with a disability

You can ask workers to include family members for support in meetings. Don’t feel shame to tell services what is important to you and your family.

Making the most of appointments and meetings There are many reasons for appointments such as information sharing, problem solving, goal setting and giving support.

The following is a list of ideas that can be used for effective meetings.

Try make the appointment in advance Make sure enough time is allowed to cover all topics You can bring along one or two family members or friends for support

Before the meeting

• •

It may help you to know who you will be talking to It is okay to let people know how you want to be involved It could help to make a list of things you would like to discuss

•

•

Discussions can be emotional and this should be acknowledged, sometimes having time-out is good If you don’t understand, don’t be afraid to ask

•

Setting goals together

• •

Setting goals is a good way to help your child develop Setting goals is about your family priorities and concerns

Message Book for Families

Stories and support for carers of people with a disability

o

• • •

During the meeting

w h e n desu

Planning the meeting

Disability can affect your child and family in different ways.

The type of support you need can change at different times of your life.

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Making decisions •

Health workers can inform families to help them make decisions Other people who can help with making decisions are your family, school staff and other people important to your child Remember, families make the final decision

• •

Tips for making informed decision

• • • •

Ask questions and talk with others Gather information Remember that not all information is good information.

Be willing to listen to different opinions

It is important to make sure that the decision feels right for you.

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Message Book for Families

Stories and support for carers of people with a disability

w

Important Numbers

Image from the Mooditj Marmun book – produced by MAN (Men’s Advisory Network) www.man.org.au

Boy Thinking

Man Thinking

I do things to be seen I want it all for me Power is for my benefit I am the centre of the universe I think I am immortal I am not concerned with the consequences of my actions I want a mother/father

I do things that I believe in I share with my community Power is for the good of all I am just part of the universe I know I am mortal I am taking responsibility for my actions I want a relationship with a partner

The shift from boy to man psychology is not one that occurs naturally. Traditionally the elders from a community make sure the shift happens, otherwise there is a risk that a boy will just grow into a man’s body. If you are a man who knows he has not made these shifts fully, you are not alone. Many men from many of today’s cultures find themselves struggling to achieve a mature masculinity. Talk to good friends, join a men’s group, or talk to a counsellor.

Message Book for Families

Stories and support for carers of people with a disability

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Tjina Maala Centre ‘GOING ON A JOURNEY’ 9021 1333 0439 596 125 Lotteries House 42 Wilson Street, Kalgoorlie, WA 6430

Deanne Williams (part-time) Community Engagement Officer deanne.williams@abilitycentre.com.au Lenice Forman (full-time) Community Engagement Officer lenice.forman@abilitycentre.com.au Part of The development of this resource was funded by the Non-Government Centre Support (NGCS) Scheme and is an initiative of Ability Centre.