++Government of South Australia: Department for Families and Communities ++Disability Services Information Sheet ++Cover Illustration by Isabel (Izzy) Doreen Jackson The painting on the front of this booklet represents the spirits within us. In 1990, Izzy became an Art Student at Tauondi College and had a few exhibitions. One exhibition was held at Tandanya and the other at the Port Adelaide Arts Centre, where she went solo. Isabel also travelled to New Zealand for an art exhibition. Tragically, in June 2002, Izzy had a severe stroke due to high cholesterol. This was a big change within the family as well as within her community. ++Introductory letter about this publication by Samantha Jackson Dear Reader. I chose to do this information booklet for the reasons being that we (Izzy's family) had no idea where to go for help from the hospital when my mother was diagnosed with brain (head) injury. I was interested to learn some more about brain (head) injury. In 2004 I had the opportunity to do a personal carers course. I was then offered a trainee position with a brain (head) injury service within the Western Suburbs. While working with this service I had an opportunity to bring information about brain (head) injury to the Aboriginal and Torres Strait Islander community. I am continuing my work with disability services in Adelaide. This booklet was only the beginning of a new era. Throughout this project I was going to make sure there was enough information to guide the community throughout their own personal journeys. By using available services, which helped my own family, I feel this will also help others by reducing the stress and burdens carried by the person and their families. I dedicate my work on this booklet to my mother Isabel Jackson for allowing myself and my family to walk through her journey together. Some of the wording in this booklet is white fella's language that you may come across through your journey and may help you understand better when dealing with services. If you don't understand you should ask - don't be frightened to ask questions. This healing journey of the brain (head) injury may be a quick journey or it could take many years of recovery stages. After many years you may still see healing. Samantha Jackson (daughter of Izzy Jackson) ++What is Brain (Head) Injury? Brain (head) injury happens when damage is done to the brain. Some examples are: - Traumatic brain (head) injury means a hard hit to the head (severe blow) during sports, a fall, a flogging (assault), car accident or shaking of a young child, to name a few - Other causes of brain (head) injury are stroke (bleeding in the brain), alcohol or drug abuse, poisoning, near drowning, disease or a work accident - A brain tumour means a growth on the brain. A brain (head) injury might affect the way a person, thinks, talks and walks and could isolate them from their communities. (Illustration of a human head, showing the brain inside, with labels about the causes of brain injury.) ++Changes Brain (Head) Injury Can Cause Some of these big words used by health professionals are described for you to understand. The Frontal Lobe (front part of the brain) contains your emotions and personality. Damage to the frontal lobe may have the following effects: - forgetting things - talking (yarning)/not making sense, repeating what you have just said - changes in behaviour - for example, going off for no reason, mood swings - not being organised – difficulty making choices - how your hands can pick up small things such as a pencil. Damage to the Cerebellum Lobe (bottom back part of the brain) may affect the way you balance, you may look like you have had some alcohol (charged up), staggering. Damage to the Parietal Lobe (above the ear part of the brain) may have the following effects: - you may lose feeling in your hands and other parts - reading, words will look different - writing will not be same - your head may ache (headaches) - not knowing distances of how far things - for example, bumping into doors - not thinking or seeing straight. Damage to the Occipital Lobe (back part of the brain) means you may: - mistake a pen for a toothbrush - forget what to use a pen for - not be able to see to one side of yourself as well. You may bump into something or shave only half of your face. - change the colours that you see. Damage to the Temporal Lobe (behind the ear part of the brain) may have the following effects: - listening and reading may be difficult - you can't remember things - you might cry/laugh for no reason - changes to your sense of smell - not recognising your family by their face but only by their voice or the other way around. You may also experience more headaches and be tired. You may also feel withdrawn and confused within your community. People may not understand your brain (head) injury because you still look the same. ++Painting of a Brolga by Suzanne Richardson. Suzanne has a brain (head) injury. ++What is Disability Services? Disability Services helps Aboriginal and Torres Strait Islander adults who have a significant and permanent disability as a result of an acquired brain (head) injury, as well as people with other disabilities. Disability Services provides support, in partnership with other suitable agencies/services, to obtain the best possible outcomes for clients. - Referrals Referral means linking the person with a brain (head) injury to the right agencies/services to meet their needs. Anybody can ask for help by telephoning the Disability Information Line on 1300 786 117. A doctor, family member or Nunga organisation can make this inquiry for you. - Assessment Assessment means talking with Disability Services staff about the person with a brain (head) injury and their disability, their needs for services and support or equipment they would like such as: - wheelchair - physiotherapy - walking frame. The next step is the Intake mob, who do the assessment of the person with a brain (head) injury. The person may then be approved as a client of Disability Services. - After the Assessment When the person with a brain (head) injury has met the Intake mob they will be introduced to a Service Coordinator in their community. The Service Coordinator will do their best to help the person with a brain (head) injury get the services and supports they need. The person with a brain (head) injury and their Service Coordinator will decide on a Support Plan. If the person with a brain (head) injury has a Support Plan they might like to show their family/Carer a copy. The person with a brain (head) injury (and their family) will continue with the Support Plan made with the Service Coordinator. The plan will be checked often, because the person's needs may change. ++What Happens to the Person with Brain (Head) Injury? The needs of the person with a brain (head) injury are assessed. What do they need? How can life be made easier? How can they be supported? Illustration of a hospital bed, with two arrows leading off to two options. Option 1, called Pathway Home, lists the pathway as assessment, modifications around the home (for example, hand rails, ramps), service referrals and carer and home help. Option 2, called Pathway to more support before home/supported accommodation, lists longer stay in hospital with support, assessment for supported accommodation, move to supported accommodation close to community if possible, and physiotherapy and extra care needs supported. ++The Support Available Disability Services helps clients to access the services and the supports they need to have a good quality of life with independence. ++Rehabilitation (Rehab) Therapy is designed to help with the process of recovery and reduce the possibility of long term disability. The main aim is to help the person with brain (head) injury to gain as much independence as possible and to teach them strategies to overcome ongoing problems. Rehabilitation can take six months or more and might be provided in a residential setting or by day attendance at a program. Further rehabilitation may be offered through your community. ++Re-entering the Nunga Community Disability Services will help the person with brain (head) injury and their family to find ways to adapt or compensate for long term problems and disabilities and to find meaningful activities if the person is unable to return to work. In some communities there are activities for Nunga people with a disability that may be suitable. ++In the Home - Equipment The person may need equipment to make their life easier. This may include a shower chair, a walking frame or a wheelchair. The person's Service Coordinator can organise this for them. - ASSIST ASSIST is a Disability Services program that provides eligible people with large and expensive equipment as well as home assessments and some therapies. The Service Coordinator of the person with a brain (head) injury will help them make an application to ASSIST if they need this kind of service. - Modifications Modifications may be needed to the person's home after they have left hospital. Some people may need equipment and modifications for a short time, while others may need them for the rest of their lives. This equipment may include: - rails to prevent the person with a brain (head) injury from falling - a ramp for a wheelchair - a shower chair. Usually a therapist will have discussed these needs with you and your family. Service Coordination can organise this for you. ++The Person with a Brain (Head) Injury and their Family - Grief and Loss Family will need to understand and come to terms with the person with brain (head) injury's new self. This process involves many different (negative) feelings and may take years before family can fully accept the person's new self. For example, some of the things that may be different can include: - shorter temper - frustration - no motivation - forgetting things - depression/suicidal - blaming others - may try to control others. A few symptoms of grief and loss include: - not sleeping well - shortness of breath - frustration - feeling weak and tired - getting angry and confused. The stages of grief and loss: - denial - anger - bargaining - guilt - depression - acceptance. Stages of grief and loss may come in any order, at any time. There is no set way a person will deal with grief and loss, it will happen in its own time and its own way. - Talking Things Out Counselling can be provided professionally (for example, Aboriginal health worker, priests, ministers, doctors) or within your family. If more support is needed, these people will recommend speaking to someone else. - Acceptance Accepting the new person takes time, but with the family's help, this enables the person with the brain (head) injury to feel better about themselves. ++Please note that with the 1800 numbers provided below, charges apply for calls made to them from mobile phones. If you call a 1800 number from a land line, the call is free. ++Support with Finances and Guardianship - The Family A person may think that as the Next of Kin (your relations: for example, daughter, son, mother, father, sister, brother) of the person with a brain (head) injury, they can check their bank accounts, take money to pay their bills and run their house. Next of Kin doesn't give you the authority or right to take control of your family member's money and the things that they own (assets). It allows you to be contacted so that you can help your Next of Kin with the brain (head) injury. To help you to take control of your Next of Kin's belongings (assets), you need to be appointed as their Power of Attorney. - Power of Attorney A Power of Attorney is a legal document where you (the 'donor’) can appoint a person of your choice (the 'donee') to manage your belongings (assets) and money while you are alive. A Power of Attorney is needed as part of your personal planning. Many people do not realise how important it is to appoint an ‘attorney’ - until they really need one. See the section on Public Trustee. - Wills A Will is needed to make sure your wishes are carried out and so that your belongings go to the people you choose. Without a Will it could take years before your loved ones can claim your belongings. See the section on Public Trustee. - Advocate An ‘advocate’ is a person who speaks for someone else when they cannot speak for themselves. An advocate may ask for more support or different support for the person with brain (head) injury. An advocate may let people know that the person with brain (head) injury is being neglected or abused. A family member or carer can be an advocate for a person with brain (head) injury. An agency or a person from an agency can also act as an advocate. Useful advocacy contacts: - Office of the Public Advocate - telephone 8342 8200 or 1800 066 969 or find more information on the web at www.opa.sa.gov.au - Aged Rights Advocacy Service - telephone 8232 5377 or 1800 700 600 or find more information on the web at www.sa.agedrights.asn.au - National Disability Abuse and Neglect Hotline - telephone 1800 880 052 or find more information on the web at www.disabilityhotline.org - Public Trustee Public Trustee is a State Government organisation. The Public Trustee can: - prepare a legal Will for you and keep it in safe custody. Wills naming Public Trustee as executor are prepared free of charge - prepare an Enduring Power of Guardianship document that appoints your Enduring Guardian to make medical decisions and lifestyle decisions such as where you live - act as Power of Attorney and look after all day-to-day finances and asset management - handle financial or legal affairs that a person cannot deal with due to accident, disease, age, illness or disability - prepare and lodge a tax return - keep important documents like passports, marriage certificates and personal records carefully stored where you know they are safe and readily accessible to you when you need them. There are conditions on some services and charges for some services. For more information contact the Public Trustee, telephone 8226 9200 or you can find more information on the web at www.publictrustee.sa.on.net. - Guardianship Board It is important to know most people with a brain (head) injury do not need a Guardian. Some people with a brain (head) injury will still be able to look after themselves and make decisions about their lives and they will not need a Guardian. Many people with a brain (head) injury or other disability have a family member, carer or friend who can help them make decisions - these people will not need a Guardian. Most of the time, a family member, carer or friend can make decisions about medical or dental treatment if the person with a brain (head) injury cannot make these decisions by themselves. The Guardianship Board will appoint a Guardian only when: - the person with a brain (head) injury is not able to make decisions for themselves and there is no-one else to help them, or - there is conflict between the person with a brain (head) injury and their family member, carer or friend who has been helping them in the past, or - the person with a brain (head) injury is at risk of self-neglect or abuse. A Guardian appointed by the Guardianship Board acts for the person with brain (head) injury and looks after that person's health and safety, making decisions about medical or dental treatment and manages their finances. Having a Guardian means a lot of decisions are taken away from the person with a brain (head) injury and their family. A Guardian should only be appointed if there is no other option. For more information, contact the Office of the Public Advocate on telephone 8342 8200 or 1800 066 969 or you can find more information on the web at www.opa.sa.gov.au. ++Support with Personal Care A carer will take care of all the identified needs of the person with brain (head) injury, which may include showering, toileting, grooming and housework. A carer can be a member of the person with a brain (head) injury's family, a friend or a person from an agency such as Aboriginal Home Care. Disability Services can help organise paid Support Workers for a short period of time if funding is available. Many local councils also have services available for a small fee. ++Other Support Available - Ambulance Cover If you call an ambulance, but don't have ambulance cover, it may cost you lots of money. An Ambulance Cover brochure that includes the application form can be collected from a hospital or doctor's surgery. You can also visit the website and print an application form (www.saambulance.com.au) or call the SA Ambulance Customer Service Centre on 1300 136 272. - Australian Disability Parking Permit You can apply for an Australian disability parking permit if it is very difficult for you to use public transport. You can have a temporary disability parking permit if your disability is likely to last for more than six months but is not permanent. An application form is available from www.sa.gov.au/disability/parking. You need your doctor to fill in some parts of the form. When this is done, send the form to Service SA (GPO Box 1533, Adelaide SA 5001) with the required fee. Call 13 10 84 if you have any questions about the permit. - Taxi Fare Subsidy Scheme You may be eligible for the taxi fare subsidy scheme. To apply for this service you will need form called 'Application for Transport Assistance'. This form is available from all doctors' surgeries or on the web at www.sa.gov.au (search for 'taxi fare'). Ask your doctor to fill out this form and sign it. When it’s filled in correctly, send it along with two signed passport sized photos of yourself to SATSS Data Processing (GPO Box 2830, Adelaide SA 5001). For assistance, call SATSS on 1300 360 840. The taxi voucher saves you money but doesn't pay for all of your fare. - Access Taxis To book an Access Taxi, telephone 1300 360 940 (24 hours a day, 7 days a week). Telephone Typewriter Service (TTY) on 8202 1256 or fax 8202 1203 or you can email to access@aitaxis.com.au. There is a fleet of wheelchair-accessible taxis operating in metropolitan Adelaide. Some are single wheelchair-accessible taxis and some are vans able to fit two or three wheelchairs plus passengers. For more information or to lodge a compliment or complaint: - telephone the taxi customer feedback line on 8210 1000 - visit the Adelaide Metro website. - Companion Card People with a significant disability may be able to use this card if they need a carer to attend recreational/leisure events with them. The card allows free entry for a carer at a number of venues, such as the Adelaide Zoo, the Festival Centre, ETSA Park and some cinemas. The card also allows free travel for a carer on public transport when they are with the cardholder who has a valid metro ticket. Telephone 1800 667 110 or download an application form from the website at www.sa.companioncard.asn.au. - Carers SA Carers provide care and ongoing support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or who are frail aged. Carers SA consults with carers and works closely with government and other support organisations to improve the lives of caring families throughout South Australia. Call Carers SA on 1800 242 636 or you can find more information on the web at www.carers-sa.asn.au. - Young Carers A Young Carer is a Carer under the age of 25 years. If you would like to talk with somebody about being a Young Carer or access information about Young Carer programs and services, call Carers SA on 1800 242 636* or you can find more information on the web at www.carers-sa.asn.au. Carers SA can also send you a Young Carer Kit. Other resources include: - Reach Out has a section on 'Being a Young Carer'. This informs you of your rights, suggests how you can look after yourself and also has a number of informative fact sheets at www.reachout.com.au - The Young Carers website includes information on dealing with stress, keeping up with schoolwork and getting enough support, at www.youngcarers.net.au - Children of Mentally Ill Consumers (COMIC) provides education and resources, public speakers and links to other support services and support groups: www.howstat.com/comic or telephone 1800 551 800. - Kids Help Line is a free, 24-hour, confidential counselling service specifically for young people aged 5 to 25 on telephone 1800 55 1800 or at the website at www.kidshelp.com.au. - Respite: taking a break from your caring duties Are you carer? Do you need a break? This information may help. If you think you or the person you are looking after may need respite care, you can talk to your local doctor, your Aged Care Assessment Team (8193 1234 for the metropolitan area) or the Commonwealth Respite and Carelink Centre (1800 052 222 statewide). They will help you to find some help. - Centrelink Centrelink has a wide range of pensions and allowances available for you. For more information, you can ring Centrelink on 132 717. - Concessions The South Australian Government offers a range of concessions to help with the cost of household and other expenses, such as energy use, water and council rates and public transport. Call the concession hotline on: 1800 307 758, email concessions@dfc.sa.gov.au or you can get more information on the website at www.sa.gov.au/concessions. ++Other Services - Aboriginal Elders Village Aboriginal Elders Village in Davoren Park offers accommodation, care and support to Aboriginal Elders as well as services to Elders, younger adults with disabilities and carers in the community. To become a resident of the Aboriginal Elders Village, you must need daily support and care. You must be assessed by the Registered Nurse. Contact the Village at: 2 Oldford Street, Davoren Park SA 5113, telephone 8287 1454 or by email at reception@aboriginalelders.com.au. You can find more information on the web at: www.aboriginalelders.com.au. - Aboriginal Home Care Aboriginal Home Care provides a range of in home and community support services to assist people to stay living independently at home. These include general housework, respite care, minor home maintenance, basic gardening services, personal care, transport (subject to approval) and assistance with shopping and banking/bill paying activities. To become a client of Aboriginal Home Care, you will need to have an interview with a Case Manager to assess whether you are eligible for services. Aboriginal Home Care will always find help and support for you. If they are unable help, they will refer you to someone who can. Contact Aboriginal Home Care at 3 Ninth Street, Bowden SA 5007, telephone 8346 9155 or by email at homecare@ahcp.org.au. You can find more information on the web at www.aboriginalelders.com.au. ++Other Helpful Phone Numbers - Disability Information and Referrals For general information and advice, or to make a referral: Telephone: 1300 786 117 Email: disabilityinfo@dfc.sa.gov.au Website: www.sa.gov.au/disability - Domiciliary Care Services Domiciliary Care Services ("Dom Care") provides services to people who have trouble caring for themselves. Dom Care helps people to stay living in their own homes, close to loved ones, family and local community. Telephone: 1300 295 673 - Independent Living Centre and Continence Resource Centre 11 Blacks Road, Gilles Plains SA 5086 Telephone: 1300 885 886 (SA and NT callers only) or 8266 5260 Fax: 8266 5263 Email: ilcsa@dfc.sa.gov.au Website: www.ilcaustralia.org - DFC Library and Information Service—Disability Collection c/- Strathmont Centre, 696–710 Grand Junction Road, Oakden SA 5086 Telephone: 8266 8556 Fax: 8266 2878 Email: disability.library@dfc.sa.gov.au Website: www.dfc.sa.gov.au/pub/libraryLlibraryHome/tabid/388/Default.aspx - Brain Injury Network of SA (BINSA) 70 Light Square, Adelaide SA 5000 Telephone: 8217 7600 Country callers: 1300 733 049 Fax: 8211 8164 Email: info@binsa.org Website: www.binsa.org - Carers SA - Carer Advisory and Counselling Service The Carer Advisory and Counselling Service provides Carers with specific advice, support, information and resources. The service is available 9.00am to 5.00pm Monday to Friday (except for public holidays). Telephone 1800 242 636 or find more information on the web at www.carers-sa.asn.au/how-we-help/information/advisory-line/ - Disability Advocacy and Complaints Service 470 Marion Road, Plympton Park SA 5038. Telephone: 8297 3500 Country callers: 1800 088 325 Email: drigney@dacssa.org.au - Continence Aids Payment Scheme (CAPS) The new Australian Government program, CAPS, helps people with permanent and severe continence issues to meet some costs of continence products. CAPS replaced the Continence Aids Assistance Scheme (CAAS). Eligible people receive a payment to help with the cost of preferred continence products. For help, telephone the National Continence Helpline on 1800 330 066 or visit their website at www.bladderbowel.gov.au. - National Continence Helpline Free confidential advice and information from specialist continence nurses is available to anyone in the community. Information can be posted to you or you can telephone 1800 330 066 to find out about continence services in your local region. Visit the website at www.continence.org.au. - Australian National Disability Abuse and Neglect Hotline The National Disability Abuse and Neglect Hotline is an Australia-wide telephone hotline for reporting abuse and neglect of people with disabilities using government funded services. Allegations are referred to the appropriate authority for investigation. Telephone 1800 880 052 or you can visit the website at www.disabilityhotline.org. - Novita Children’s Services Novita is a non-government agency that provides therapy, equipment and family support for children with acquired brain injury (as well as physical or neurological disability). Enquiries and referrals: 1800 337 443 or you can find more information on the web at www.novita.org.au. - Adelaide Access Taxis To book an Access Taxi call 1300 360 940 (24-hours-a-day, 7-days-a-week). Telephone Typewriter Service (TTY) 8202 1256 or fax 8202 1203 or you can email access@aitaxis.com.au. Remember to give all details when making a booking (for example, how many people are travelling). You can also apply for a VIP number, and quote this when you book. - ONCALL Interpreters and Translators Agency ONCALL provide interpreting services face to face, over the telephone or written down. Telephone: 8410 5111 Fax: 8410 5999) Email: adelaide@oncallinterpreters.com Website: www.oncallinterpreters.com ++Copies of this publication are available from the Disability Information Service Telephone: 1300 786 117 Email: disabilityinfo@dfc.sa.gov.au Website: www.sa.gov.au/disability Version: April 2011 ++Licensed under Creative Commons http://creativecommons.org/licenses/by/2.5/au/deed.en Attribute to: The Department for Families and Communities, Government of South Australia