Post date: Feb 11, 2016 12:17:06 PM
Hi
My name is Matthew Snow and I am the father of a 13 year old son who has a profound level of Autism. I am also currently completing my PhD at Southern Cross University under the supervision of Dr James Donnelly. My research is investigating how the National Disability Insurance Scheme (NDIS) affects the personal well-being of parents who care for an individual with an Autism Spectrum Disorder (ASD).
I am seeking parents and carers to participate both before and after the NDIS is rolled out as this will enable me to measure the effect the NDIS has on parents and carers of individuals with an ASD.
The survey measures carers and parents personal well-being (The Personal Well-being Index - PWI), emotional states of depression and anxiety (Modified Depression Anxiety and Stress scale – DASS), level of care giver stress (Caregiver Strain Questionnaire – CGSQ) and the quality of life as a care giver (Caregiver Quality of Life instrument – CGQoL).
Data from the first stage of my research indicated that parents and carers of individuals with an ASD report significantly increased levels of depression, anxiety and stress along with a reduced sense of parenting competence. The results from this research have been accepted by the Journal of Autism and Developmental Delays for publication this year.
I understand that the NDIS is an evolving scheme that seeks to better the lives of thousands of Australians, however I feel it is vital to assess the well-being and quality of life of parents of individuals with an ASD so that we can inform future policy. The fact that 28% of those currently participating in the NDIS meet criteria for an ASD (National Disability Insurance Agency, 2015), hearing from carers of those in this significant subgroup seems essential.
As you may be aware, there are some issues coming to light with the NDIS for the parents and carers of individuals with an ASD. Although some report improvements in some aspects of funding or service provision, other reports indicate that waiting times for an assessment and the challenges in having to learn the ‘system’ in order to self-manage a participant’s NDIS funding package have been problematic (NSW Carers Australia, 2014). These early reports indicate that we need to better understand the experience of those assisting individuals who currently access non-NDIS services and those participating in this new scheme.
I am asking for your assistance in the recruitment of participants for this important research by sending this email to your friends and clients or include it your social media or newsletter resources. Participation involves completing a very brief (10 – 15 minute) online survey at two separate times, approximately 12 months apart. In general, the survey will assess carer demographics, NDIS experience, wellbeing, mood and quality of life.
Your participation or assistance with recruitment of participants would be greatly appreciated and I believe beneficial to those who care for an individual with an ASD.
The survey can be accessed at this address - https://www.surveymonkey.com/r/V77B8WZ
Warm regards
Matthew Snow
PhD Candidate / Data Analyst
School of Health and Human Sciences
MLG 18, Southern Cross University,
Coffs Harbour, NSW 2450
CRICOS Provider: 01241G