As the parent of a child with UHL, having a good team of health professionals around you who can guide and support you is invaluable.You and your family are the most important people on your baby's team. Professionals will come and go but you are there for the long haul. If you have a good rapport with your team members, you will feel more comfortable expressing your concerns and communicating your needs to them.
Finding a good General Practitioner (GP) can be a useful asset for the whole family. Build a relationship with your GP. Educate your GP about UHL. Your GP can be a great coordinator when you are seeing a number of different services and specialists. Your GP will be able to make appropriate referrals to a paediatrician and Ear Nose and Throat surgeon (ENT) who will monitor your baby's development and hearing. It is often useful to ask for recommendations from family and friends with young children about good GPs in your area.
After the diagnosis of a hearing loss, children are referred to Australian Hearing. Australian Hearing is a Commonwealth Government Authority that provides a full range of hearing services to children and young people up to 21 years of age. If your child is not fitted with a hearing aid, your Australian Hearing audiologist will work out a management plan with you. This is likely to include a combination of routine hearing monitoring, usually by the audiologist who initially referred you and reviews at key stages of your child's development at the Australian Hearing centre. If your child's hearing will be monitored by an audiologist outside Australian Hearing, you want to find an audiologist with experience working with young children. You may need to do a bit of research to find a suitable audiologist. Audiology Australia has a directory of audiologists on their website.
Family support worker
Newborn hearing screening programs usually provide access to either a social worker or a family support worker. Their role is to guide and support you until you are engaged with the appropriate services. The social worker or family support worker can help you with information about hearing loss and early intervention services for babies with UHL. They can advise you about any financial or other assistance that may be available to you.
Early intervention service
Early intervention provides services to families to assist their child to get the best start in life. The goal of early intervention is to help the baby with a hearing loss to learn to communicate, to use any available hearing and to interact socially. The professionals at the early intervention services have special training in hearing loss, its management and language development.Early intervention for children with UHL is a new area and may not be available to all families, particularly those in regional and rural areas. Your audiologist or family support worker should be able to tell you about early intervention services for children with UHL in your State. You may need to pay a fee for early intervention but this should not deter you. If cost is a problem, visit the early intervention services and talk the issue through with them.
|When attending appointments
Parent-to-parent mentoring programs are available in some States. Parent mentors have children with a hearing loss and have been trained to guide and support you in the early days. Many parents of newly diagnosed children find that talking to another parent with a child with UHL is very helpful. They have the understanding and knowledge that comes from the lived experience.
Aussie Deaf Kids has an online group for parents of children with UHL. Parents share ideas, information and experiences and learn from each other.
15-Nov-2015 8:29 PM (AEST)