Carer and service providers’ experiences of individual funding models for children with a disability in rural and remote areas

Abstract

What is known about the topic• IF is increasingly favoured by governments globally.• IF has the potential to empower service users with more choice and access to new opportunities.• People with a disability living in rural and remote areas have fewer service choices on which to spend their IF. What this paper adds• Highlights the issues related to accessing IF in a rural and remote area.• Identifies benefits and barriers for rural and remote service users and service providers using IF models.• Suggests strategies for enhancing the experience of IF for service users and providers in rural and remote areas. AbstractThere is a global movement for people with a disability towards personcentred practices with opportunities for self-determination and choice. Person-centred approaches may involve individual funding (IF) for the purchase of required support. A shift to a person-centred model and IF should allow people with a disability and their carers greater choice in therapy access. However, individuals who live in rural and remote areas have less choice and access to therapy services than their metropolitan counterparts. Drawing on data from a larger study into therapy service delivery in a rural and remote area of New South Wales, Australia, this study describes some benefits and barriers to using IF to access therapy services in rural areas. Ten carers and 60 service providers participated in audio-recorded focus groups and individual interviews during which IF was discussed. Transcribed data were analysed using thematic analysis and constant comparison. Greater access to and choice of therapy providers were identified as benefits of IF. Four barriers were identified: (i) lack of information and advice; (ii) limited local service options and capacity; (iii) higher costs and fewer services and (iv) complexity of self-managing packages. A range of strategies is required to address the barriers to using IF in rural and remote areas. Carers indicated a need for: accessible information; a local contact person for support and guidance; adequate financial compensation to offset additional travel expenses and coordinated eligibility and accountability systems. Service providers required: coordinated cross-sector approaches; local workforce planning to address therapist shortages; certainty around service viability and growth; clear policies and procedures around implementation of IF. This study highlights the need for further discussion and research about how to overcome the barriers to the optimal use of an IF model for those living in rural and remote areas.

Perspectives of self-direction: a systematic review of key areas contributing to service users’ engagement and choice-making in self-directed disability services and supports

“…Of the 18 articles, 15 were original research papers from Australia (Dew et al . ), Finland (Eriksson ), New Zealand (Espiner & Hartnett ), Germany (Junne & Huber ), the United Kingdom (Mitchell ,b,c, ,b, Kendall & Cameron ) and the United States of America (Heller et al . , Gross et al .…”

“…); one included the perspectives of a combination of family members or caregivers and service providers (Dew et al . ); and two articles explored the perspectives of service users who had support from parents or guardians when necessary (Mitchell , Lombe et al . ).…”

Parental perceptions of information needs and service provision for children with developmental disabilities in rural Australia

“…As a result of this inadequate training over a third of participants in the study did not know what to ask professionals, and were reliant on the information they could find from other families. A more recent research study focusing on provider and carer experiences of individual funding (IF) models of disability, interviewed 10 parents of children with disabilities in rural NSW and found that both providers and carers reported a number of barriers in the uptake of IF packages including: lack of information and advice, limited local service options and capacity, higher costs and fewer services [28].…”

Individual funding systems: What works?

“…Improved choice is often argued to be an important result of individualized funding systems, and the evidence suggests that this is likely to be particularly challenging for those in rural and remote areas, where availability of services is restricted ( Dew et al 2013 ). In their study of individual budget pilots in England, Netten et al (2012Netten et al ( , 1568 found that those in receipt of these mechanisms reported a 'greater sense of control', and this was not dependent on the plan being in place or the level of resources allocated to the individual.…”

“…• Choice over whether to receive traditional services or self-manage; • Support appropriate to cognitive, physical and cultural needs to be an active participant in planning; • Mechanisms to review appropriate to capacity and individual needs; In their study of barriers to the use of individual budgets in rural and remote areas, Dew et al (2013) note similar challenges, including: a lack of information and advice; limited local service options and capacity; higher costs and fewer services; and the complexity of self-managing individual funding packages.…”