Annmaree Watharow and Susannah McNally
We are here at the Save Sight Institute Family Day as part of our mission with the Dual Sensory Impairment Project to consolidate partnerships and raise awareness of the issues impacting people and families living with sensory impairments. Our brief today is twofold: a presentation of managing transitions from children’s health care services to adult services. This time is known to be difficult with challenges in adult hospitals, in particular of poorer communication and more negative experiences. Secondly, to follow that we are hosting a social-haptics communication workshop for parents, educators, professionals and support workers. See part 2 for more details on that one.
Managing the transition to adult health services and hospitals is difficult because of the many systemic and professional barriers and attitudes. But we can help ourselves to increase the chance of a better experience by 1. Creating a super team that supports us in the community, and 2. Being prepared for hospital encounters.
Super Teams
A super team provides care, support and capacity building: it should be made up of all the people we need to keep us well, not just in health but also psychologically, socially and in lifelong learning. A super team can be big or small. Maybe all we need is our favourite GP and our eye doctor. If we are more complicated, we might need an occupational therapist, a diabetes educator, a kidney specialist… in fact, the list could go on and on. Everybody’s super team will be different, even if we have sensory loss or losses in common. I, for example, have deafness as well, and that makes things really complicated. My super team has an audiologist and sign language teacher as well as my eye doctor, GP and occupational therapist. Since in this country we don’t have a dedicated specialist dual sensory impairment unit to provide diagnosis, recognition of complex needs and coordinated integrated services, a super team becomes important for those with DSI.
A super team can help in lots of ways other than just seeing you when needed. They can assist by:
- Co-ordinating goals and information for individual specialist NDIS reports
- Sharing information about how to communicate better, what strategies or devices might be helpful
- Teaching other new skills, such as sharing health haptics, which we will cover in part 2
- Helping support family and carers by listening, supporting and referring for additional services as needed
But basically, all the members of a super team should listen to you and what your needs and goals are.
Who is in a Super Team?
Anybody involved in your care and support and may include for example:
- Gps
- Registered nurses
- Allied health professionals
- Medical specialists
- Social workers
- Psychologists
- Audiologists
- Mobility and orientation trainers
- Educators
- Assistive technology experts
- Support co-ordinators
- Family members, carers and support workers
Each team will be different as each person has different residuals of hearing and vision, different goals and different personal resources. Don’t forget to include the partners, families, and carers in the super team.
The super team doesn’t even have to meet, just make sure someone (yourself, a parent, partner, GP, etc.) is in contact with everybody and shares contact information and any important challenges and changes in your condition/s.
As we age, we tend to collect new conditions and our lives can change quickly. Super team members can email, zoom, phone, chat in person, have formal or informal meetings, share ideas and educate each other. This is exceptionally important for all older people. See Melissa Levi’s book “We need to talk about ageing” (Levi, 2023). This resource has clear advice on how to achieve a dream super team.
It’s important you trust the members of your super team so don’t be afraid to look for another health professional if you need to. It’s important also to have a leader, and usually yourself, a parent, partner or support co-ordinator. The GP is a good person to do this as they can share agreed-upon information among the group. There are special Medicare items such as chronic disease management plans that pay GPs for organising and attending team meetings.
Further Reading:
Levi, M. (2023) We Need to Talk About Ageing: Essential conversations and practical advice to navigate the ageing journey with confidence. Hachette UK. https://www.hachette.com.au/melissa-levi/we-need-to-talk-about-ageing-essential-conversations-and-practical-advice-to-navigate-the-ageing-journey-with-confidence