Young Onset Parkinson’s Exchange (YOP-X)
Evidence from people with young onset Parkinson’s suggests a lack of information, education and understanding of the condition, symptoms, progression and supports to allow for social, community and economic participation. Current information and education is not well targeted for the under 65 age group with Parkinson’s, and is often not accessible for people with competing demands such as employment, family and school commitments, sport, social events and activities or those who live outside of metropolitan and major regional centres. Parkinson's education is usually delivered face-to-face for the retired over 65's demographic, and the 1800 national support line is only staffed during office hours.
The Young Onset Parkinson’s Exchange (YOP-X) App will provide information and education designed specifically for people under the age of 65 living with Parkinson's and related conditions. YOP-X will remove current barriers preventing clients, as well as health professionals, NDIA staff and contractors accessing high quality education and information, and the delivery of the information through online and app based platforms will appeal and is suited to how the under 65's prefer to access information and support. YOP-X will also provide people living in rural and remote communities with access to quality information in easily accessible formats.
In Australia, there is generally a poor understanding of neurological degenerative conditions by health professionals, NDIA and NDIS contracted providers. It is regularly reported that NDIA staff and NDIS have little or no understanding that Parkinson’s and related conditions are incurable, progressive, neurodegenerative diseases with complex symptoms and a significant decline affecting quality of life and the ability to participate in the community, workforce and economy.
Case Study 1: An NDIS Local Area Coordinator who didn’t know that Parkinson’s was an incurable disease, and asked applicant when they would recover
Case Study 2:An NDIS Local Area Coordinator who did not think that someone who was “young” could have a diagnosis of Parkinson’s
Case Study 3: An NDIS Local Area Coordinator who rejected microphonia (low/soft voice) a very common symptom of Parkinson's requiring speech therapy to maintain and strengthen their voice, but advised that if client lost their voice, the NDIS could provide a speech generation device which would have made the client unable to continue working.
It is important that the NDIS and other health professionals meet the needs of clients living with neurological degenerative conditions such as Parkinson's, and to do this they need to understand the client’s condition, symptoms, issues and the treatments available that enable clients to participate in family, work, social and recreational life. YOP-X will provide accessible, free, up to date, easy to understand, interactive content to enhance education and the ability to understand symptoms, management, care/support and treatments for people living with Parkinson's. The portal will be available to consumers, care providers, health professionals and NDIS staff/providers including NDIS Local Area Coordinators, support coordinators, plan managers and contractors. The resource will offer maximum accessibility, avoiding the need for costly face-to-face training, and learning validation within short training units will ensure that the user has understood the content and can apply it to real life scenarios.
Issues within Parkinson’s symptoms and progression are unique to each individual, and this is compounded in younger clients because of employment, study, relationships, financial impact and stress and the fact that they live with disease for much longer. Improved knowledge and uptake of measures that have been clinically proven to improve quality of life and wellbeing including exercise programs and healthy lifestyle choices can reduce Parkinson's associated complications. Outcomes expected for a better informed and supported person living with Parkinson include:
Extended participation in employment
Continued participation in recreation/sporting activities
Continued participation in household duties
Child rearing and family responsibilities
Improved planning for financial impact of the disease on the individual or family
The YOP-X Project will engage and undertake outreach to the target groups via the Parkinson’s state and national networks, newsletters, social media, over 300 geographically-based support groups, recreational groups, exercise groups, Parkinson’s nurse specialists, allied health providers and neurologists. It will be developed and co-designed by people living with Parkinson’s and other movement disorders, tested and reviewed by the key cohorts and Parkinson's experts, promoted and publicised with Parkinson’s and NDIS communities, and evaluated by independent evaluators.