The National Disability Insurance Scheme began a full national rollout in July 2016 based on a fundamental principle to give those with a disability choice and control over their daily lives. Participants can use funds to purchase services that reflect their lifestyle and aspirations. Two years on, how is the scheme faring?
The National Disability Insurance Scheme (NDIS) is required by law to provide “reasonable and necessary supports” to help eligible people with a disability live more independently. Determining what supports are reasonable and necessary involves subjective assessments by the National Disability Insurance Agency (NDIA), which administers the scheme, or its contractors. This makes for a tricky process.
The NDIS has two arms. There are individual support packages available to around 475,000 people with high levels of assessed needs. There is also the more recently introduced Information Linkages and Capacity Building (ILC) program, which aims to assist all 4.3 million Australians aged 16-65 with a disability. This promotes inclusion of all people with disability into their communities by helping individuals and by building the community’s capacity to welcome them.
The NDIS hopes the links created through the ILC program will reduce reliance on specialist disability supports and individual support packages over time. Most of the media stories detailing failures concern people missing out on individual support packages and the lack of alternative supports available.
So, are NDIS participants receiving the necessary and reasonable supports they need to live a quality life?
What makes supports reasonable and necessary
The NDIS uses tight definitions when it determines reasonable and necessary supports and allocates individual support packages. It doesn’t duplicate other formal supports such as health and education. Nor does it pay for day-to-day living costs or informal supports already available from family and friends.
It is contrary to the NDIS philosophy to have a formula that dictates reasonable and necessary supports for a particular type and severity of disability – nor is it practical. Two people with the same type and severity of disability may have different goals and so different support needs. One person may want to pursue education and employment, while another may want more community activities.
These regulations require planners employed or contracted by the agency to help each applicant identify their goals and draft a plan. The plan sets out the supports needed to achieve their goals. Participants are then allocated funds for these supports, which must represent value for money. Funds can only be used to achieve the goals in the NDIS plan.
The guidelines say the NDIA will fund daily living activities, social activities, aids and equipment and home modification. Though in practice, it’s the NDIA assessor who determines what is reasonable and necessary for an individual, and whether the person gets an individual support package or misses out.
The NDIA commissioned Flinders University to provide an independent evaluation of how the scheme was faring. Published in February 2018, it found most NDIS participants were satisfied with their supports. It also identified a range of problems and around 9% of respondents were dissatisfied with the support they received.
These findings were based on a satisfaction survey, which asked participants, their family and carers for their opinions. Satisfaction surveys have limitations because people can be grateful for the services they receive and not know they are entitled to more. We might therefore expect the satisfaction ratings reported to be on the high side.
The findings were reassuring, in that people who were in the scheme for longer gave higher satisfaction ratings. The researchers concluded that people learned about NDIS processes and became better at negotiating the support they wanted over time. The higher levels of satisfaction correlated with people receiving increased support and having more choice and control over their support.
The lowest satisfaction scores came from adults with an intellectual disability (which includes Down syndrome), followed by those with issues related to mental health. This may have been due to the NDIS disrupting services previously provided to these two groups. Day centres, holiday camps and drop-in centres are no longer block-funded, and now rely on people with individual packages selecting them. With increased options and competition some services are considering closing. This uncertainty is causing concerns for some people using these services and their families.
The highest satisfaction scores came from the families of children with a developmental or congenital disability. They received Early Childhood Early Intervention (ECEI) support for children under six years to develop skills needed for daily activities. The NDIS insurance approach is investing in young children to maximise their abilities and minimise future demands on the scheme.
There were several reasons participants gave low scores. These included having inadequate funding to meet their needs, planners not understanding their disability, planners producing inconsistent plans, and a lack of transparency as to how decisions were made. These findings support concerns expressed in the sector that staff implementing the NDIS don’t have the necessary skills, training, experience, and resources (including time) to assess reasonable and necessary supports.
Participants and families who were confident, educated and able to articulate their support needs were more satisfied than those who were unable to navigate the NDIA website to obtain information about services and providers. The report concluded that the NDIS needs to provide better advocacy, advice and assistance for plan development and coordination, especially for disadvantaged people.
The NDIA has since developed a new access strategy for disadvantaged groups including people with complex needs, psychological and social disabilities, those from Aboriginal and Torres Strait Islander communities, people living in remote and very remote communities and people from culturally and linguistically diverse (CALD) communities.
The strategy will offer these groups face-to-face meetings with one worker for all NDIS contacts, replacing phone contacts which was often with different workers. The allocated worker will help plan NDIS supports and liaise with other government departments such as health, education and transport services to assist the person access services and community activities.
The latest Council of Australian Governments Quarterly Report tells of many positive achievements. While this is not an independent assessment and tends to emphasise the positive aspects and overlook the problems, the stories reflect the statistics in the independent evaluation. One example was a man who said:
I’ve been able to use my funding to help me find a job and settle down. The NDIS has changed my life!
The NDIS has achieved much over the past five years but acknowledging its achievements doesn’t deny its many problems. The scheme is still in its infancy and has a long way to go to change old cultures, establish new processes, train staff and shape community expectations.
A major concern is that the government will not provide enough funds for the NDIS to overcome establishment difficulties and reach its potential. The Council of Australian Governments says the NDIS is on track to stay within its A$22 billion annual budget. This is despite more people joining the scheme and less people leaving than expected.
A new NDIS price guide has increased the rates for some NDIS supports. Hopefully, this will reduce workforce and service shortages by paying higher wages and costs. It may also deplete the NDIS budget faster and result in each person receiving less funding. Anecdotal reports say that funding for individual plans is being cut. This is certainly something to watch.
This article was first published by The Conversation.