Table 1 Forum data by access dimension

Availability

Unmet need for information

Services, support, diagnoses

Need for information on child’s disability and available support was a prominent concern. Women lacked an understanding of what support existed, even within their local communities. Few had internet access, sought information on disability at a public library. Carers felt they had to educate themselves and that current health education channels were not reaching them adequately. Regarding family access to information, in one instance, a carer described a delay in hearing her child's diagnosis: “It was months after she was diagnosed that I found out how serious this was.”

Participants stated that a lack of knowledge of available services was a prominent factor in Aboriginal carers not accessing disability services. People were generally unaware of what services were available and that there was not enough information available to let people know about services. Some service providers, too, were unaware of the breadth of services offered.

Financial support

Need for information on availability and eligibility for financial support from government welfare organisations currently and in future

Insufficient supply of programs and services

Treatments delays

Long waitlists for case worker, specialists, and allied health professionals meant time without treatment or therapies, during crucial stages of development when support/assistance is most vital.

Delay between assessment and treatment (eg. waitlists to see speech pathologists ranged from 6 – 24 months)

Men's programs

No supports/support groups in place for fathers or male carers despite a great need

Transitional services, programs for teens

Perceived a significant gap in available services for teenagers and transitional arrangements to assist in adjustment from school to work, work experience, university, or employment

After school cultural programs

No culturally appropriate after-school activities available for their children with a disability:

“Where do the kids go that have fallen down the cracks?”

Childcare and school placements; disability support in schools

Difficulty in getting school or child care placements for their children; few schooling options due to the lack of vacancies and lack of appropriate disability support services. Students are placed in classes according to need and the school’s capacity to address this need.

Tutoring support

Unable to secure a position in a state school she perceived as meeting her child’s needs, one carer reported needing tutoring support for her child whom she was home schooling, but did not know how to access this assistance.

Affordability

Out-of-pocket expense

Respite

Private respite services were accessed by one woman due to inflexible government-subsidised services, but this was expensive and unsustainable.

Childcare

The cost of child care, in particular, a place where disability or delay is often identified, impeded use of this service.

Tutoring

Cost of tutoring support for child being home schooled is high; carer resigned from job to home school which increased financial stress and social isolation.

Transport

Cost of public transport to various agencies and appointments can become expensive.

Accessibility

Pathway complexity

Confused pathway and processes inhibit access

Given the many obstacles, the complexity of unclear pathways, and denials by health professionals and educators that a problem exists and warrants support, one woman stated: “Carers have to do the hard yards to get support.”

Complexity and lack of communication led to significant delays in children receiving services. For instance, it was reported that children sometimes are teenagers before they are linked to support. Participants commented that their case managers found it hard to locate and communicate with other disability services. One participant commented: “It shouldn’t be this hard.” They discussed the complexity for health professionals within this system and highlighted the lack of cross-sector communication.

This was linked to insufficient communication between organisations; information about a child’s condition was not shared for purposes of facilitating treatment or support.

Referral process confusion; referrals initiated by school and councils rather than by families, implicating schools as important entities within the process.

The absence of a centralised case management body was perceived as problematic.

Information Technology complexity

Systems to facilitate both provider and carer access of services and networks were perceived as not user-friendly. In particular, a health service provider website and an excess of complicated forms for carers to complete were obstacles to accessing services.

A dual diagnosis can complicate service access and provision for a carer and the child. The system reportedly was confused and slowed by multiple differing needs for one client.

Reputation as inaccessible

Service reputation as inaccessible a deterrent

Expectation of delayed service (perceived as non-responsive or slow to respond) based on previous experience with disability support organisations led to avoidance of said agencies; perceived crisis-centred only

Physical location

Travel burden

One woman and her family moved from a rural area for better service access, but still faced several months wait for her child's treatment.

Travelling long distances from rural communities while simultaneously caring for other children were cited as barriers to accessing services. In metropolitan areas, travelling on public transport to various agencies and appointments can be time consuming and inconvenient, particularly with small children.

Accommodation

Unmet Communication needs

Timing, language, and style of health professionals interactions

Pamphlets and other literature on medications did not satisfy the need for information; health professional jargon and emotional response to diagnosis impeded comprehension. One carer’s perspective of hearing the diagnosis: “Your whole world is crumbling down…” Need longer contact time with the health professional or other suitable person and more opportunities for understanding this information. They also needed broader referrals and education.

The information on disabilities is hard for Aboriginal families to understand and interpret the signs.

Parental experience and expertise was not recognised during interactions with mainstream services while attempting to obtain support for her child: “They don’t listen, they tell us.”

Culturally appropriate communication

Frustration of not being heard; eg. respite provider would not use Aboriginal language with child, despite having been advised that this would enable communication; carer perceived this as an example of Aboriginal language differences not being respected and consequently making it harder for Aboriginal children with a disability to have their needs met.

Administrative Burden

Excessive paperwork

For some, a barrier to obtaining financial support was the amount of paperwork that needed to be completed and necessary documentation.

Service inflexibility

Respite restrictions

Government-subsidised respite policies and services were described as restrictive, inflexible, not family-centred, crisis-driven, and not meeting carers’ needs and commitments (eg. one woman mentioned that she was given respite on a weeknight outside of business hours. This timing meant that she was unable to undertake an activity which would make her feel that she had had a break).

“Disability is a family issue.”

School-based support

Need for more tutoring support for mainstream-placed students; without this, children may leave the school system early or require home schooling (eg. unable to secure a position in a state school she perceived as meeting her child’s needs, one carer resigned from her job and began home schooling, which increased her social isolation and financial stress)

Diagnostic & geographic rigidity restrict and delay access to services

Difficulty accessing support when developmental problems were not obvious, visible, or usual; one carer explained that due to her child’s non-academic achievements, she had to endure multiple tests to ‘prove’ her disability. Her child’s teacher attributed her difficulties in school to a pre-occupation with extracurricular activities, as repeated by this carer: “She said, ’if she didn’t spend so much time participating in (extracurricular activities) she would be fine at school.’”

Disability assessment is highly structured and results in a diagnosis or label; carers may prefer a holistic approach to understanding the child and their circumstances. Rigid criteria for access to services, such as diagnostic assessments and geographic boundaries that did not take into account the individual needs of the family and child creating uncertainty for carers and providers and restricting and delaying access to needed services.

Acceptability

Remnants of colonisation and trauma

Historical distrust

A deterrent from help-seeking was concern that children might be taken away by government child protection services.

Consideration of historical context of welfare organisations and ‘white history’ (referring to white Anglo-Australian cultural dominance and history of colonisation, oppression, and removing of Aboriginal Australian children from their families by government welfare organisations). This may influence carers and service providers to avoid engagement. Group consensus regarding trust as significant barrier that inhibited families accessing disability services, particularly via government organisations.

Based on their own and others’ experiences, the women believed that Aboriginal people were made to feel as if they had caused their child’s disability; perceived assumptions and generalisations about substance abuse and unemployment: “They [organisation staff] make you feel like you caused it [the disability].” This woman explained that neither she nor her husband drink alcohol, smoke, or use drugs, yet she felt strongly that she was being blamed for her child’s disability: “You could be an angel and they would still criticise you.”

Perceptions of racism and blame

Felt they were under increased scrutiny, had to prove that they needed support, were considered undeserving, or were being judged negatively for needing assistance. Carers perceived that ‘the system’ favours or prioritises parents who appear not to be coping or have obvious problems.

Another deterrent was the perceived attitude of some organisations: “They make you feel like they are doing you a favour by giving you respite.”

Disregard for culture

One respite service provider was reported to have failed to communicate in a culturally appropriate way which would have facilitated care of a child having been advised that this would enable communication. She believed this behaviour made it harder for Aboriginal children with a disability to have their needs met.

Inappropriate handling, labeling, management

Another barrier to trust was the perception that there were too many people involved in the process. Families that needed support felt that they were being passed around to different people.

Disability assessment is highly structured and results in a diagnosis or label. This may be off-putting to carers as it does not reflect a holistic approach to understanding the child and his or her context and circumstances.