Improving access for Australians who are Deaf, have a hearing impairment or a chronic disorder of the ear

2. The Deafness Forum is the peak body for Deafness in Australia and represents those who are hearing impaired and have a chronic disorder of the ear. It also represents those who are deaf blind and the parents of deaf children.The Deafness Forum is the peak body for Deafness in Australia and represents those who are hearing impaired and have a chronic disorder of the ear. It also represents those who are deaf blind and the parents of deaf children.

3. Lobbying Raising children DVD Election campaign.Raising children DVD Election campaign.

4. Election Campaign Federal election campaign 2007 Go through pdf separatelyFederal election campaign 2007 Go through pdf separately

5. Raising Children DVD Raising children DVD On Monday 20 August 2007 while listening to ABC radio at lunchtime, Deafness Forum staff heard a news story about the launch of a new DVD �Raising Children� which was launched by the Prime Minister and aimed at parents. Deafness Forum immediately embarked upon a campaign to check if this DVD had captions provided to assist the millions of Australians who are Deaf or have a hearing impairment. Within a matter of hours, Deafness Forum had contacted the Raising Children network, the Murdoch Foundation, the Prime Minister�s office, the Human Rights and Equal Opportunity Commission, the Department of Families, Community Services and Indigenous Affairs, Media Access Australia, Blind Citizens Australia, National Disability Services, and other organisations. We brought this matter to their attention and asked them to also join in the campaign to get access features added to the DVD. The next morning Deafness Forum released their media release about the DVD, highlighting its lack of accessibility. While blindness is not an area of responsibility, Deafness Forum also pointed out the need for audio description, and ensured that blindness groups received relevant information. (media release at Attachment B) While this story was picked up in a range of media, the important outcome was that the makers of the DVD immediately stopped production of the DVD and committed to including captions in the next release. To provide assistance with the solution, Deafness Forum helped to provide quality assurance and comments on the captioning in progress for the next release of the DVD and answered other questions from FaCSIA, about numbers of parents with hearing loss, incidence of deafness, accessibility best practice for captioning, captioning quality, and others. Deafness Forum has promoted its advocacy to its members and to other parties (see Attachment C for an example). Deafness Forum�s swift and decisive action on this access issue prevented hundreds of thousands of DVDs from being distributed in an inaccessible format. 200,000 new DVDs were produced, including captions, for distribution. This action also raised awareness of captioning for a range of parties, including within government bodies, and in a timely manner given that it occurred during 2007 Hearing Awareness Week. Raising children DVD On Monday 20 August 2007 while listening to ABC radio at lunchtime, Deafness Forum staff heard a news story about the launch of a new DVD �Raising Children� which was launched by the Prime Minister and aimed at parents. Deafness Forum immediately embarked upon a campaign to check if this DVD had captions provided to assist the millions of Australians who are Deaf or have a hearing impairment. Within a matter of hours, Deafness Forum had contacted the Raising Children network, the Murdoch Foundation, the Prime Minister�s office, the Human Rights and Equal Opportunity Commission, the Department of Families, Community Services and Indigenous Affairs, Media Access Australia, Blind Citizens Australia, National Disability Services, and other organisations. We brought this matter to their attention and asked them to also join in the campaign to get access features added to the DVD. The next morning Deafness Forum released their media release about the DVD, highlighting its lack of accessibility. While blindness is not an area of responsibility, Deafness Forum also pointed out the need for audio description, and ensured that blindness groups received relevant information. (media release at Attachment B) While this story was picked up in a range of media, the important outcome was that the makers of the DVD immediately stopped production of the DVD and committed to including captions in the next release. To provide assistance with the solution, Deafness Forum helped to provide quality assurance and comments on the captioning in progress for the next release of the DVD and answered other questions from FaCSIA, about numbers of parents with hearing loss, incidence of deafness, accessibility best practice for captioning, captioning quality, and others. Deafness Forum has promoted its advocacy to its members and to other parties (see Attachment C for an example). Deafness Forum�s swift and decisive action on this access issue prevented hundreds of thousands of DVDs from being distributed in an inaccessible format. 200,000 new DVDs were produced, including captions, for distribution. This action also raised awareness of captioning for a range of parties, including within government bodies, and in a timely manner given that it occurred during 2007 Hearing Awareness Week.

6. Project - Guidelines for working with deaf children and their families Addresses how services are delivered, not what is delivered At the start of the year, the Deafness Forum was approached by the University of Canberra to supervise a project to be undertaken by one of their students. This allowed the Deafness Forum to design a project where the majority of the work would be done by a final year undergraduate student. The Deafness Forum had previously been in consultation with parents regarding the early support and services they receive after their child has been diagnosed as deaf. The parents wanted some guidelines around how the services would be delivered in a way to support them. Research has shown that families who have been given consistent information and support following the diagnosis of their child�s hearing loss have better outcomes. This can information such as: teaching early communication skills (such as Auslan), technical support regarding implants and hearing aids and general information such as hearing tests and procedures. Knowledge is power when it comes to deafness and a parent who is well informed will be able to make the best possible decision for their child and their family. The project not intended to criticize the fantastic work that a range of professionals, including hospitals and Australian Hearing, undertake on a day to day basis. Rather, they are intended to reinforce and strengthen this work by including family-centred standards into the entire process. Continuous feedback from families is fundamental to the development of good quality service. The project was based on a set of guidelines developed by the National Deaf Children�s Society in the United Kingdom. The project began in early 2007 and is expected to take at least 18 months to full implement. At the start of the year, the Deafness Forum was approached by the University of Canberra to supervise a project to be undertaken by one of their students. This allowed the Deafness Forum to design a project where the majority of the work would be done by a final year undergraduate student. The Deafness Forum had previously been in consultation with parents regarding the early support and services they receive after their child has been diagnosed as deaf. The parents wanted some guidelines around how the services would be delivered in a way to support them. Research has shown that families who have been given consistent information and support following the diagnosis of their child�s hearing loss have better outcomes. This can information such as: teaching early communication skills (such as Auslan), technical support regarding implants and hearing aids and general information such as hearing tests and procedures. Knowledge is power when it comes to deafness and a parent who is well informed will be able to make the best possible decision for their child and their family. The project not intended to criticize the fantastic work that a range of professionals, including hospitals and Australian Hearing, undertake on a day to day basis. Rather, they are intended to reinforce and strengthen this work by including family-centred standards into the entire process. Continuous feedback from families is fundamental to the development of good quality service. The project was based on a set of guidelines developed by the National Deaf Children�s Society in the United Kingdom. The project began in early 2007 and is expected to take at least 18 months to full implement.

7. Rationale Why is the project needed? Hearing screening and the relevant early intervention services are state based in Australia, funded (at least in part) but the state governments. This means that children who across Australia will receive different levels of care. Development of the standards will ensure that children across Australia will receive a consistent and family centred approach in the early days of being diagnosed deaf. Other countries such as the United Kingdom have moved in this direction and have detailed system-wide quality standards in place. Those standards seek to address the important issues of timeliness of diagnostic response, timeliness and quality of family counselling and emotional support, and the timeliness and quality of early intervention services made available to children identified with early-identified hearing impairment and their families. Hearing screening and the relevant early intervention services are state based in Australia, funded (at least in part) but the state governments. This means that children who across Australia will receive different levels of care. Development of the standards will ensure that children across Australia will receive a consistent and family centred approach in the early days of being diagnosed deaf. Other countries such as the United Kingdom have moved in this direction and have detailed system-wide quality standards in place. Those standards seek to address the important issues of timeliness of diagnostic response, timeliness and quality of family counselling and emotional support, and the timeliness and quality of early intervention services made available to children identified with early-identified hearing impairment and their families.

8. Family centred practice is a method of service delivery which acknowledges the role of the family in a child�s life. The concepts of family centred practice include: Viewing the family as the unit of attention � so taking into considering the needs of the family as a whole, rather than just the needs of the child Informed family choice � giving the family options and letting them choose the best option for their child And Viewing the family from the strengths perspective � so looking at the positive impact of the family on their childs life and how this can be used in their development. On the whole, family centred practice brings together theory, best practice and what is actually happening in the field.Family centred practice is a method of service delivery which acknowledges the role of the family in a child�s life.

9. How was the project implemented Finding the standards Australian Hearing National Deaf Children�s Society (UK) Colorado Project (USA) Parents steering committee selection Online forum for standards discussion The standards were based on a set of guidelines developed by the National Deaf Children�s Society in the United Kingdom. We also found a set of guidelines that Australian hearing had developed a set of protocols aimed at their hearing centre staff. While both documents provided a great starting point � we wanted to develop some guidelines that were accessible to both families and all professionals and were also appropriate in an Australian context. We also looked at a �wishlist� compiled by the Colorado project in the USA. We brought all these standards together to be discussed. So with the principles of family centred practice in mind, we looked at ways we could engage parents to get their input on what standards they thought would be applicable to them. We agreed that we would need the input of parents and families from all states, as they all differ in their hearing screening and early intervention services. Because we were looking at children who were diagnosed early (mostly through newborn hearing screening) we asked that parents had a child who was under six and had been diagnosed but that they also had a network of families they could consult with regarding the standards. Twelve nominations meeting the selection criteria were received. The nominations represented all states but the Northern Territory and Tasmania. To discuss the standards an online discussion board was developed. Having the group online worked well for the parents because of their geographical location and also because most parents had more than one child it allowed them to make their comments and suggestions in their own time. The standards were based on a set of guidelines developed by the National Deaf Children�s Society in the United Kingdom. We also found a set of guidelines that Australian hearing had developed a set of protocols aimed at their hearing centre staff. While both documents provided a great starting point � we wanted to develop some guidelines that were accessible to both families and all professionals and were also appropriate in an Australian context. We also looked at a �wishlist� compiled by the Colorado project in the USA. We brought all these standards together to be discussed. So with the principles of family centred practice in mind, we looked at ways we could engage parents to get their input on what standards they thought would be applicable to them. We agreed that we would need the input of parents and families from all states, as they all differ in their hearing screening and early intervention services. Because we were looking at children who were diagnosed early (mostly through newborn hearing screening) we asked that parents had a child who was under six and had been diagnosed but that they also had a network of families they could consult with regarding the standards. Twelve nominations meeting the selection criteria were received. The nominations represented all states but the Northern Territory and Tasmania. To discuss the standards an online discussion board was developed. Having the group online worked well for the parents because of their geographical location and also because most parents had more than one child it allowed them to make their comments and suggestions in their own time.

10. We split the standards into four groups � Those around the diagnosis of deafness � including hospital screening and support, audiologist referral and timelines from initial screen to diagnosis. Early support and intervention which had standards around getting information about all the support services available, counselling and support for the family and ongoing support from the government The standards around Communication with parents dealt with issues such as giving unbiased and accurate information, making allowances and catering for the linguistic preferences of parents and providing information in a way the parents would prefer � whether it be written, verbal, video or audio. The last section of standards dealt with staff training, which were fairly straight forward, ensuring that professionals who work with the family have a knowledge of the support services available and counselling training. In addition to the standards, we also discussed some performance indicators, which would help the professionals know if they were meeting the standards when working with the families. The phases of the standards were introduced gradually, with the sections ranging from 5 standards to 10. They were introduced around one to two weeks apart. Once the parents had made comments on the standards, we went through them and made any changes suggested and presented them back to the parents.We split the standards into four groups � Those around the diagnosis of deafness � including hospital screening and support, audiologist referral and timelines from initial screen to diagnosis. Early support and intervention which had standards around getting information about all the support services available, counselling and support for the family and ongoing support from the government The standards around Communication with parents dealt with issues such as giving unbiased and accurate information, making allowances and catering for the linguistic preferences of parents and providing information in a way the parents would prefer � whether it be written, verbal, video or audio. The last section of standards dealt with staff training, which were fairly straight forward, ensuring that professionals who work with the family have a knowledge of the support services available and counselling training. In addition to the standards, we also discussed some performance indicators, which would help the professionals know if they were meeting the standards when working with the families. The phases of the standards were introduced gradually, with the sections ranging from 5 standards to 10. They were introduced around one to two weeks apart. Once the parents had made comments on the standards, we went through them and made any changes suggested and presented them back to the parents.

11. Diagnosis Parents must be given information about the screening process in advance. Parents must be given accessible information they can take away with them at the time of confirmation. Parents must be fully informed about the nature and extent of their child�s deafness At the time of confirmation of deafness there must be a professional present that is known to the parents. Staff must be well trained in assessment approaches and be able to explain both the testing procedures and results to parents before the assessments are being done. Information on hearing screening should be touched on in hospital antenatal classes. Midwives or nurses must be trained to adequately deal with mothers whose babies do not pass the initial hearing screening. These standards relate to treatment of, and information given to parents regarding the diagnosis of their childs deafness. When discussing these standards, the parents acknowledges the struggle for balance with preparing the parents versus overwhelming them with information. Parents must be given information about the screening process in advance. At the time of screening they must have the opportunity to ask questions and seek clarification. Parents must be given accessible information they can take away with them at the time of confirmation. This must include details about who will be contacting them, when this will be and where they can obtain further information and advice Parents must be fully informed about the nature and extent of their child�s deafness At the time of confirmation of deafness there must be a professional present that is known to the parents. The professional must make sure they make time to share the news with the family and ensure that they and a counsellor is available within 24 hours to meet with the family. Staff must be well trained in assessment approaches and be able to explain both the testing procedures and results to parents before the assessments are being done. Written information must be made available to all parents on the assessment procedures. Information on hearing screening (such as when it will be conducted and why) should be touched on in hospital antenatal classes. Midwives or nurses must be trained to adequately deal with mothres whose babies do not pass the initial hearing screening. These standards relate to treatment of, and information given to parents regarding the diagnosis of their childs deafness. When discussing these standards, the parents acknowledges the struggle for balance with preparing the parents versus overwhelming them with information. Parents must be given information about the screening process in advance. At the time of screening they must have the opportunity to ask questions and seek clarification. Parents must be given accessible information they can take away with them at the time of confirmation. This must include details about who will be contacting them, when this will be and where they can obtain further information and advice Parents must be fully informed about the nature and extent of their child�s deafness At the time of confirmation of deafness there must be a professional present that is known to the parents. The professional must make sure they make time to share the news with the family and ensure that they and a counsellor is available within 24 hours to meet with the family. Staff must be well trained in assessment approaches and be able to explain both the testing procedures and results to parents before the assessments are being done. Written information must be made available to all parents on the assessment procedures. Information on hearing screening (such as when it will be conducted and why) should be touched on in hospital antenatal classes. Midwives or nurses must be trained to adequately deal with mothres whose babies do not pass the initial hearing screening.

12. Early intervention and support Support workers A representative from the early years support services must be available immediately after any confirmed hearing loss is confirmed There must be one support worker responsible for co-coordinating the early years support services for the family Parents must be fully involved in deciding on the support and intervention for their deaf child, as well as monitoring and evaluating the effectiveness of this provision A representative from the early years support services must be available immediately after any confirmed hearing loss is confirmed Parents must be fully involved in deciding on the support and intervention for their deaf child, as well as monitoring and evaluating the effectiveness of this provision Services must be flexible and available at times that suit families, such as at evenings and weekends In order to allow services to work in a multidisciplinary way for each child, health, education and social services must: Have shared resources Meet at least twice yearly Engage in multidisciplinary training to develop working relationships and good communication Develop compatible IT systems Allow adequate staff time to collaborate on joint working and planning There must be one support worker responsible for co-coordinating the early years support services for the family When state health/Australian hearing receives a referral that a child has been diagnosed as deaf they must ensure that the family is contacted within a week by a relevant professional. Families must be visited by someone from the support services within two weeks. Parents must be given information on hearing aid implementation, support and management before a hearing aid is fitted. All assessments � whether hearing or language related - must have a clear set of aims and outcomes which will be used to benefit the deaf child and their family A representative from the early years support services must be available immediately after any confirmed hearing loss is confirmed Parents must be fully involved in deciding on the support and intervention for their deaf child, as well as monitoring and evaluating the effectiveness of this provision Services must be flexible and available at times that suit families, such as at evenings and weekends In order to allow services to work in a multidisciplinary way for each child, health, education and social services must: Have shared resources Meet at least twice yearly Engage in multidisciplinary training to develop working relationships and good communication Develop compatible IT systems Allow adequate staff time to collaborate on joint working and planning There must be one support worker responsible for co-coordinating the early years support services for the family When state health/Australian hearing receives a referral that a child has been diagnosed as deaf they must ensure that the family is contacted within a week by a relevant professional. Families must be visited by someone from the support services within two weeks. Parents must be given information on hearing aid implementation, support and management before a hearing aid is fitted. All assessments � whether hearing or language related - must have a clear set of aims and outcomes which will be used to benefit the deaf child and their family

13. Early intervention and support cont. Service delivery Services must be flexible and available at times that suit families, such as at evenings and weekends Services must work in a multidisciplinary way When state health/Australian hearing receives a referral that a child has been diagnosed as deaf they must ensure that the family is contacted within a week by a relevant professional. Families must be visited by someone from the support services within two weeks.

14. Quality of information Parents must be given information on hearing aid implementation, support and management before a hearing aid is fitted. All assessments must have a clear set of aims and outcomes which will be used to benefit the deaf child and their family Early intervention and support cont.

15. Communication with parents Information given to families must be unbiased, comprehensive, clear, accessible and accurate. Parents must receive all information in their preferred language, and have equal access to their preferred forms of information. Staff must be able to organise and provide support for the linguistic preferences of parents Professionals working with the deaf child and their family must provide unbiased and accurate information on all communication methods Information about voluntary and support sector services must be given to the family Services must offer families the opportunity to meet with deaf adults and children Information given to families must be unbiased, comprehensive, clear, accessible and accurate. Parents must receive all information in their preferred language, and have equal access to their preferred forms of information. This could be written, verbal, video or audiotape Staff must be able to organise and provide support for the linguistic preferences of parents, such as the provision of interpreters Professionals working with the deaf child and their family must provide unbiased and accurate information on all communication methods Information about voluntary and support sector services must be given to the family at the confirmation of deafness, at key stages throughout their child's life and when requested by the family Services must offer families the opportunity to meet with deaf adults and children, who have been trained to work with families with young deaf children Information given to families must be unbiased, comprehensive, clear, accessible and accurate. Parents must receive all information in their preferred language, and have equal access to their preferred forms of information. This could be written, verbal, video or audiotape Staff must be able to organise and provide support for the linguistic preferences of parents, such as the provision of interpreters Professionals working with the deaf child and their family must provide unbiased and accurate information on all communication methods Information about voluntary and support sector services must be given to the family at the confirmation of deafness, at key stages throughout their child's life and when requested by the family Services must offer families the opportunity to meet with deaf adults and children, who have been trained to work with families with young deaf children

16. Staff training All services must ensure their staff is trained to communicate appropriately, sensitively and effectively with families Support workers must receive training that will enable them counsel, attend appointments and explain the different methodologies in EI programs. Regardless of who becomes the families support worker they must have: knowledge of services, ability to be unbiased, knowledge of different communication methods, knowledge of the diagnosis and early intervention process, counselling skills and ability to connect families with other deaf families. Expectation of quality of care. Deserve to know that staff who work with them and their children are qualified to do so. All services must ensure their staff is trained to communicate appropriately, sensitively and effectively with families, particularly at critical times such as the time of confirmation of deafness Support workers must receive training that will enable them counsel, attend appointments and explain the different methodologies in EI programs. This training should include information on the different models of deafness, as well as learning about how the use of these models can impact upon the deaf child and their family Regardless of who becomes the families support worker they must have: Specific knowledge of local and national services for deaf children and how to access them; Skills in presenting information without bias Knowledge and understanding of different communication methods; The ability to fully support a family in their choice of communication method; Knowledge of who the key professionals working with the child and family are and how to contact them; Counselling, communication and negotiation skills; and Be able to introduce families to other families with deaf children and the deaf Expectation of quality of care. Deserve to know that staff who work with them and their children are qualified to do so. All services must ensure their staff is trained to communicate appropriately, sensitively and effectively with families, particularly at critical times such as the time of confirmation of deafness Support workers must receive training that will enable them counsel, attend appointments and explain the different methodologies in EI programs. This training should include information on the different models of deafness, as well as learning about how the use of these models can impact upon the deaf child and their family Regardless of who becomes the families support worker they must have: Specific knowledge of local and national services for deaf children and how to access them; Skills in presenting information without bias Knowledge and understanding of different communication methods; The ability to fully support a family in their choice of communication method; Knowledge of who the key professionals working with the child and family are and how to contact them; Counselling, communication and negotiation skills; and Be able to introduce families to other families with deaf children and the deaf

17. Challenges faced Self selection Obtaining full representation Participation Technology Though the group was successful in getting parents to discuss the standards, there were also challenges involved. The first of these, was the fact that having the group online meant that people were automatically excluded from participation. While having internet access is relatively common in Australia today, it is not always the case. The fact that invitations to join the committee only went out to Deafness Forum members also meant people were excluded. In the beginning of the project we were hoping to get at least one representative from each Australian state, male and female representation and an indigenous representative. However, we were unable to get a parent from either the Northern Territory or Tasmania, a male or an indigenous representative. Because of the nature of the group not all members participated. In every group there are always people who will say more and others who are more hesitant to participate and this was the case with having the group online. An online group allowed members to lurk and read what others were writing but not contribute themselves. Though the group was successful in getting parents to discuss the standards, there were also challenges involved. The first of these, was the fact that having the group online meant that people were automatically excluded from participation. While having internet access is relatively common in Australia today, it is not always the case. The fact that invitations to join the committee only went out to Deafness Forum members also meant people were excluded. In the beginning of the project we were hoping to get at least one representative from each Australian state, male and female representation and an indigenous representative. However, we were unable to get a parent from either the Northern Territory or Tasmania, a male or an indigenous representative. Because of the nature of the group not all members participated. In every group there are always people who will say more and others who are more hesitant to participate and this was the case with having the group online. An online group allowed members to lurk and read what others were writing but not contribute themselves.

18. Further implementation The consultation process with the parents is still underway, but once we have our standards approved by the parents we are hoping to get the ball rolling. There is no point in developing standards that the parents want if it is not feasible for professionals to implement them, so another review needs to take place with professionals. This could be done online like the parents committee, but is more likely to be face to face meeting, as it works out easier for professionals and government employees to attend a one or two day workshop rather than logging onto a forum and posting their comments. This will also enable the different viewpoints of the different professionals, such as those associated with diagnosis and those with early intervention to see what the others are offering. Once the professional review is undertaken, the relevant government departments need to be engaged regarding implementation. The Deafness Forum has already been in consultation with the Department of Health and Ageing regarding the standards, but because hearing screening and early intervention is controlled by state governments each state will need to be contacted individually with their own implementation plan. The Deafness Forum is attending the National Newborn Hearing Screening conference in Brisbane in October to give a presentation on the development of the standards, which will be the first step towards getting recognition that they standards are being developed, by both the professionals and governments attending the conference. So even though my role in the project may be over, there is still quite a way to go for the project as a whole before the standards can be implemented.The consultation process with the parents is still underway, but once we have our standards approved by the parents we are hoping to get the ball rolling. There is no point in developing standards that the parents want if it is not feasible for professionals to implement them, so another review needs to take place with professionals. This could be done online like the parents committee, but is more likely to be face to face meeting, as it works out easier for professionals and government employees to attend a one or two day workshop rather than logging onto a forum and posting their comments. This will also enable the different viewpoints of the different professionals, such as those associated with diagnosis and those with early intervention to see what the others are offering. Once the professional review is undertaken, the relevant government departments need to be engaged regarding implementation. The Deafness Forum has already been in consultation with the Department of Health and Ageing regarding the standards, but because hearing screening and early intervention is controlled by state governments each state will need to be contacted individually with their own implementation plan. The Deafness Forum is attending the National Newborn Hearing Screening conference in Brisbane in October to give a presentation on the development of the standards, which will be the first step towards getting recognition that they standards are being developed, by both the professionals and governments attending the conference. So even though my role in the project may be over, there is still quite a way to go for the project as a whole before the standards can be implemented.

19. Many other ongoing and one-off projects

20. With thanks to Eg Kathy Challinor Eg Kathy Challinor