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

Improving access for Australians who are Deaf, have a hearing impairment or a chronic disorder of the ear Nicole Lawder Deafness Forum of Australia

Deafness Forum Deafness Forum exists to improve the quality of life for Australians who are Deaf, have a hearing impairment or have a chronic disorder of the ear

Lobbying • Deafness Forum has been increasing its external lobbying – examples include • our 2007 election campaign • Raising Children DVD • family centred standards project

Election Campaign • For members to send to their local federal candidates • Asking for responses • 4 key issues, 20 questions • To go on Deafness Forum website

Raising Children DVD • Launched by PM on 20 August • Largely funded through grant from FaCSIA • Aimed at new parents throughout Australia • No captions or audio description • Rapid and effective media campaign

Project - Guidelines for working with deaf children and their families Addresses how services are delivered, not what is delivered • A set of family centred standards • Development over 18 month period

Rationale Why is the project needed? • Ensure a nationally consistent, family centred approach to service delivery • Allow professionals and families to work together to ensure the best outcomes are achieved for each child.

Family centred practice • Family as the unit of attention • Informed family choice • Viewing the family from a strengths perspective • (Craft-Rosenberg, Kelly and Schnoll (2006) Family centred care: practice and preparation. Families in Society, 87, 1. 17-25

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 • Presenting the standards: • - Diagnosis • - Early intervention/support • - Communication with parents • - Staff training

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.

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

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.

Early intervention and support cont. 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

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

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.

Challenges faced • Self selection • Obtaining full representation • Participation • Technology

Further implementation Where to from here? • Further discussion with parents to develop document • Professional review • Government engagement and implementation

Many other ongoing and one-off projects • Captioning Awards • Hearing Awareness Week – send out free posters and other materials including website • Summit every second year • Educational scholarships • Libby Harricks Memorial Oration

With thanks to • Board of Directors • Many committed volunteers • Professionals who represent us on committees and panels • Catherine Adcock and University of Canberra for assistance with parents project

References Craft-Rosenberg, M, Kelly, P & Schnoll, L (2006) Family centred care: practice and preparation. Families in Society, 87, 1. 17-25

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