Ahead of Rare Disease Day on Sunday 28 February 2021, Rocky Bay are excited to have launched our Early Start Intervention Program (ESIP) to support families with young children who have significant developmental delay, and risk factors associated with rare disease.
Our ESIP Program Coordinator, Cristina Lee, shares some information about the program itself, what it involves and how it can help eligible families.
In a nutshell, what does the ESIP involve?
It provides children under five-years-old who have significant developmental delay, and/or developmental regression, as well as multiple symptoms and risk factors associated with rare disease, access to intensive and multidisciplinary early intervention services guided by best practice principles.
Participants receive a combination of individualised home-based early intervention support and services by our team of experienced physiotherapists, occupational therapists and speech pathologists, and also group-based hydrotherapy run by a team of physios at Rocky Bay’s Mosman Park hub.
The ESIP educates and supports families and caregivers up-skill and improve their confidence to put strategies in place to promote their child’s development and progress toward their child’s individualised goals. It will also help families navigate formal supports and advocate for other appropriate services for their child, such as the NDIS.
What does your role involve as program coordinator?
My role as ESIP coordinator involves communicating with key stakeholders and referrers in the Perth metro area who may have identified children that meet the criteria for the ESIP. I also gather information about the participants and their families prior to an initial meeting – this really helps health care providers become familiar of each family’s story.
I am also responsible for allocating therapists to families based on their location and needs, and attend the initial meeting with families to introduce them to the ESIP.
What will the ESIP mean for eligible families?
The ESIP provides eligible families with access to a comprehensive, holistic structure of regular assessment, goal setting and intervention for up to 12 months. This will help to identify and develop meaningful goals in partnership with participants and their families to drive intervention.
Our therapy team will also support up-skilling and arm families with strategies and activity ideas that they can use in their everyday routines to support their child to reach their goals, which is captured by the Individual Family Service Plan (IFSP) that all participants will complete with their key contact person.
Families will participate in standardised assessments and goal setting at six month intervals throughout the program guided by their therapy team, enabling progress to be measured throughout and ensuring goals remain relevant. This method means we can collate information which can be used to guide and advocate for participants to access other appropriate services and supports they may be eligible for, such as the NDIS.
What is so unique about the ESIP?
It supports families with children who are identified as at risk, rather than those who already have a diagnosis, with what supports are available, which can be a difficult process early in the journey. The ESIP strives to ensure families can continue accessing therapy services within natural settings, and have a team around to support them so their child doesn’t miss out on opportunities during the critical early windows of development.
The program is aligned with best practice principles, so families know they are accessing evidence-based support. We also take the time to get to know our families and their routines, and how therapy can be embedded into daily life.
Families will also have a key contact person who is a member of their child’s therapy team that they can contact at any time if they have any concerns. The ESIP will also aim to connect families with local community support groups and with each other to help them build informal support networks.