Delays in initial assessment and service provision
The lack of documented diagnosis is the first major delay to accessing the NDIS. Eligibility rests on diagnosis, but a timely diagnosis depends on the availability of specialists to diagnose conditions in the public health system. Purchasing private services through the MBS subsided Chronic Disease Management Plan is not an option as an assessment, rather than treatment is required. Even where the person arrives with medical reports, they may not be accepted as they are not in English, or are not produced within Australia.
NDIS focuses on functional disability. Determining functional disability usually requires an assessment by an allied health professional such as an Occupational Therapist (OT), but often also a psychologist, or speech therapist. Waiting lists for publicly funded community-based allied health services are up to 14 months in some areas of metropolitan Sydney. Most refugees are in acute financial hardship on arrival and cannot afford to purchase private services. Unlike GPs and specialists, private allied health services are not eligible for fee-free interpreting through the Commonwealth Government’s Translating and Interpreting Service (TIS), so the costs of an assessment also include the cost of an interpreter.
Unlike most Australians living with a disability, refugees on arrival are not already receiving existing services or necessarily have any equipment while they wait for their NDIS Plans to come into effect. These delays can be substantial. Service providers indicate that it can take months to collect the evidence needed to submit an application for NDIS access (which may include a GP report, paediatrician report, Occupational Therapy report, and psychometric assessment); between two to nine months for NDIS to determine eligibility; and at times an additional two months more for an NDIS planning meeting, and extremely varied time frames (2 days – 3 months) to acceptance of the plan. Even with the benefit of a Service Coordination provider from NDIA, it may be a number of months before services are in place. Delays of up to 6 months between lodging an application, access and services being granted are commonly reported.
Plan quality is another issue. At times, NDIS planners and LACs have limited understanding of the presenting disability and have developed very poor plans. For example, one client with cerebral palsy but no intellectual disability was set up for a day placement at a service for people with moderate to severe developmental delay. For others the plan is clearly inappropriate for someone with no English and no understanding of services in NSW. For example, where Support Coordination is not included in plans, and LACs are not supporting families if support coordination is not available. Delays also occur when more evidence is required, and whenever there is any service agreement changes. For example, when there are changes to an equipment order, the service provider is required to go back to the family to change the contract first. In some cases, where equipment has been delayed, NDIS requests a new quote as the quote is now out of date, and needs to be re-issued. In this case, health services must assist the family again. In other cases, Support Coordinators may be part of the plan but do not pick up the referral, leaving the client unassisted. A NSW case, the referral was given to a Western Australia based Support Coordinator.
Provision of specialist equipment such as wheelchairs and hoists is also subject to delays. Specialised equipment needs to be prescribed by an OT before it is ordered. Custom-made equipment (for example for people with curvature of the spine) takes considerable time to make. When specialised equipment does arrive, an OT appointment is often needed to make adjustments and to show the family how to use it safely.
Faced with urgent needs, refugee health services have been forced to purchase private OT services to meet this gap. They have developed relationships with community groups and sourced donated or second and equipment to meet the immediate need. While SIS has the capacity to request approval from DSS to continue to hire necessary services, this is only available for SIS clients and is rarely applied for. Delays in equipment make it more difficult for them to participate in, and integrate into, their new community: it can mean they cannot leave their home at all.
Access to early intervention services has also been delayed for many children living with a suspected disability. NDIS created an additional pathway for children up to 7 years old with disability or developmental delay, the Early Childhood Early Intervention (ECEI). Large waiting lists for services are reported by service providers, with the restructuring of ECEI providers causing confusion. One service provider reports that few of their referrals made to ECEI have resulted in services being provided, with families not aware of the process or their progression in the queue. The waiting list does not appear to recognise that newly arrived refugee children are likely to have had limited access to prior services in triage.
The lack of access to the NDIS leaves people without support to access vital services and puts pressure on settlement services that are not equipped to deal with disabilities. As settlement services are not funded to provide extensive case management, the cost is shifted to the NSW Government, as health services pick up the case management without sufficient dedicated resources or additional funding.
A recent change in policy has also been identified by service providers as increasing the risk of delays. Changes to the HSP in October 2017 has meant that health information are not made easily available for all new arrivals, just those considered ‘high risk’. Service providers are concerned that this may increase the risk of critical health conditions being left unaddressed upon their arrival, leading to delays in receiving vital supports. ‘High risk’ denotes immediate medical care is needed, but does not indicate long-standing disability that may require immediate modified or specialist equipment. For example, a person living with cerebral palsy may not br high risk, but may need a wheelchair and services soon after arrival to attend to daily living.
In NSW, refugee health services are only given access to overseas health reports once a referral is made, which may be a week after arrival. If refugee health providers were informed of arrivals’ needs prior to arrival, preplanning assistance would commence, including ensuring requests for appropriate mobility aids. Where possible, refugee health or HSP providers should be able to transfer medical information to Centrelink as proof of diagnosis to streamline receipt of required disability related benefits. Alternatively, offshore medical information generated by the DHA should be automatically sent to DHS and linked via the Centrelink Registration Number.
Finances, housing and transport
As permanent visa holders, newly arrived refugees are eligible for Centrelink benefits, and are assisted by HSP services to apply within days of arrival. There are a range of benefits that a person with a disability or their carer may be eligible for, including the Disability Support Pension (DSP), Carer Allowance and Payment, Rent Assistance, Child Disability Assistance Payment, and the Youth Disability Supplement. Eligibility typically depends on diagnosis. As many newly arrived refugees have may not have been diagnosed prior to arrival, the person needs to be referred to specialists for diagnosis. Private specialists typically do not bulk bill and are therefore not an option for this group. Public waiting lists are typically lengthy. For some specialist services there are no public options, for example diagnosis of adults with intellectual delay in parts of Sydney.
In some cases, diagnosis will have been provided by specialists overseas but are not accepted by Centrelink as they are not in English or on the grounds that the diagnosis was not conducted by an Australian doctor. Others may have had a diagnosis from a doctor contracted by the Department of Home Affairs as part of their Immigration medical assessment. Delays getting the Disability Support Pension (DSP) due to lack of acceptance of medical reports from posts is highly problematic, particularly as HSP only funds the hire of mobility aids such as wheelchairs for 28 days. After this time clients are expected to rent their own wheelchair. Service providers report that their clients cannot afford to rent specialised wheelchairs and other equipment on Newstart.
Appropriate housing for humanitarian entrants with a disability is crucial in enabling them to live a healthy, productive and dignified life. Many service providers reported concerns about the lack of appropriate short-term and long-term accommodation for this group. Public housing stock is extremely limited in metropolitan Sydney, even for priority groups, so newly arrived refugees, with few exceptions, must use the private rental market after arrival.
Stock of affordable disability-appropriate rental housing is also extremely limited, especially for people with no rental record. HSP providers or sponsors usually assist newly arrived refugees to find rental properties. Applications for rental accommodation may have occurred prior to their DSP application so are based on the lower Newstart income, limiting their rental options further. The rush to secure accommodation, or pressure to acquiesce to the preferences of the carer, can result in people locked into leases in houses they cannot use. There is a need for accommodation support that can recognise the needs of the person with a disability and is able to advocate for their rights. RCOA member organisations have noted a number of cases where people in wheelchairs have been settled into rental accommodation with insufficient space in the bathroom to allow for daily care. Others have been settled into flats with steps, leaving the person unable to leave their house without risk to themselves or their carer. Determining whether a flat is appropriate for someone with a complex disability can be difficult, and may require the oversight of an OT.
Affordable and accessible public transport is also crucial for social and economic participation, especially as this will affect a person’s ability to access mainstream and disability related services. Having access to accessible and affordable transport and being able to understand the way that transport works is essential to making appointments, participating in social activities, and accessing education and employment. State governments have a key role in ensuring that the transport network is wheelchair accessible.
Public transport is not suitable for everyone living with a disability. In these cases DSS should approve service caps to ensure HSP can provide transportation until the taxi transport subsidy scheme (TTSS) is in place. The TTSS supports NSW residents who are unable to use public transport because of a severe and permanent disability. At present, a person may have exhausted the assistance provided via HSP before the TTSS or DSP is in place leaving them and their carers extremely isolated.
Some NDIS funding is inaccessible for people on low incomes. Modifications to private cars can be funded through the NDIS. However, this option is unattainable for those on lower incomes as approval for such modification would only be granted if the car/vehicle is less than 3 years old. Refugee families are typically in acute financial disadvantage at arrival and therefore not able to purchase a newish car. As approvals for some equipment from NDIS may take a year from submission to approval it is likely that the car needs to be 2 years old at the time of application.