29 March 2018
Submission to:
Inquiry into the implementation, performance and governance of the National Disability Insurance Scheme in the ACT
Introduction
Sharing Places Inc is an ACT based, not for profit disability service provider, providing community access and social participation support (day services) for adults aged from 18 years who have severe to profound disability. The people who access Sharing Places have high and complex needs and require full time support and intervention. All clients accessing Sharing Places have a primary intellectual disability, requiring 24/7 intensive support. Clients present with high and complex needs in the areas of mobility, challenging behaviour, communication, personal care, PEG feeding, seizures, self-injurious behaviour, sensory disorders, and dual disability disorders. Sharing Places is the only disability service provider in the ACT delivering quality day options and catering to such a diverse set of needs.
Sharing Places recognises that each of our clients is an individual with different needs and desires. Sharing Places works closely with our clients, their families and other agencies in developing and delivering individualised supports within a variety of community settings. Individual plans are developed between our clients, staff, families and carers, and other disability service providers. These individual plans include specific and detailed strategies and skills development against goals from a range of learning domains. Sharing Places works to see individuals achieve self-determination in all those matters important to them, and strives to remove those barriers that prevent people from participating fully in our community.
Sharing Places currently supports 159 people across 12 support teams in the ACT, with each support team having access to a team base and wheelchair accessible vehicles. Sharing Places employs permanent staff members (both full time and part time) due to the complexities of the people we support and the need for specialist knowledge management across the organisation. This is also essential for workers to build trust, as people with high and complex needs can only achieve their goals when they are in relationships based on environments where they feel comfortable to take on challenges.
Issues
Sharing Places has a number of issues that have been observed by Sharing Places and discussed with participants and their families. These include:
Workforce Development
Sharing Places has made significant changes to its workforce since the introduction of the NDIS. Due to the high and complex needs of the people we support, it is essential for the organisation to employ permanent staff rather than casuals. Prior to the NDIS each staff member received non-face time to carry out those tasks essential to the position without utilising support time with participants in order to fulfil the tasks. We have now needed to significantly reduce this time which has impacted on the quality of support for participants as there are now tasks that have to be carried out with participants (ie, progress notes, consumables, attendance records, incident reports). There is also added pressure on workers to complete their tasks as efficiently as possible, there is little flexibility around processes, and there is less time for debriefing and meetings to discuss support strategies. Workers certainly feel enormous pressure with the reduced non-face time. Although Sharing Places’ workers are extremely supportive of the organisation and its sustainability, there has been a growing number of union membership since the introduction of the NDIS because of the increased pressure on the workforce. Despite the increase workforce pressures for employees, Sharing Places currently continues to attract a consistent and steady workforce, but we are mindful of the increasing demand for workers in the disability sector. Sharing Places also continues to employ people under the Regional Sponsored Migration Scheme.
The NDIS has also impacted on staff professional development. Sharing Places provides additional training to its staff to ensure that they are able to deal with the types of high and complex support needs that generally affect our clients. The organisation has a very thorough induction process that ensures all staff are confident and effective in supporting people. This is costly, but essential for the safety of our clients, staff, and members of the public. In addition, staff receive additional training on the organisation’s policies and procedures to ensure compliance with Commonwealth, State and Territory laws and our quality assurance framework.
Previously, Sharing Places has been able to provide ongoing and ‘refresher’ training to our staff to ensure that their skills remain current. However, the organisation has had to forego six days of training per year for all staff because we can no longer fund the costs associated with providing this training. To provide the training we would need to close the organisation for a week each year – that is a week where we would have no income, and we cannot survive without income. These extra training opportunities were especially utilised for innovation and knowledge sharing, and this is a significant issue for the organisation moving forward.
Availability of Services
Sharing Places has been in operation since 1989 and the organisation has been steadily growing since then, growing from supporting 16 participants to now supporting 159. As Sharing Places is the only service within the ACT providing social and community participation for people with very high and complex support needs, we have seen a higher rate of intake each year since the introduction of the NDIS. Over the past 5 years or so, we have also expanded our services to support people who are higher functioning but are not able to access other services due to their support needs having a level of complexity that excludes them from other community programs. There is still a very large gap in the capacity of mainstream services to be inclusive for people with disabilities.
The importance of day service support provision is still largely underestimated by key NDIS decision makers in the ACT. The complexities of support needs can make it extremely difficult for a person to actively participate in their community, and when coupled with the added complexity of identifying opportunities for valued contribution to society, makes it an area that is vital for the wellbeing and quality of life for people with high and complex support needs. While the NDIS Act is conducive to inclusion principles, the Act is currently not been implemented as per its objectives by the NDIA in the ACT. The trial phase carried out the objectives of the NDIS very well in its early stages. However, this has slowly diminished as the trial has progressed and we are now seeing even further digression into full rollout of the Scheme. This is of significant concern to the Board of Sharing Places, and the impact this will have on the quality of life and wellbeing for people with disabilities and their families.
Local Area Coordination (LAC)
The introduction of the LACs in the ACT has, unfortunately, been of insignificant impact. The LACs provide NDIS planning review conversations and that is mostly the extent of their involvement in the disability community. This is not necessarily a reflection of poor service from the LAC provider, but rather poor design within the NDIS. There is little to no linking of people with disabilities with services and businesses within the community, and families receive minimal support and advice from LACs about general disability information. This is a large service gap within the community, and service providers continue to provide this as a free service for the people that they support. However, with the increased pressures on service providers this may not be sustainable in the future.
Quality Assurance
Sharing Places is the leading disability service in the ACT for people with high and complex needs providing social and community participation. Since the NDIS was implemented on 1 July 2014, the organisation has been constantly reviewing processes and implementing changes in line with the Business Rules and scope of the NDIS. There have been a number of changes to the way the organisation conducts its business and to the value added initiatives that were once common practise. The full effects of these changes will still be unfolding for some time to come, and the organisation will need to be extremely vigilant in monitoring its performance against quality standards. This is especially difficult in the ever-
changing environment of the NDIS and the unknown elements of the Quality and Safeguarding Framework.
Sharing Places also notes that changes to the NDIS, even the smallest of changes, have huge implications for the organisation and the people it supports. The moveable feast that is the current environment has caused much strain and uncertainty for disability services providers. Sharing Places urges the inquiry to consider how constant changes to the system impact on disability services providers and their ability to continue to provide services.
Transportation Costs
Prior to the NDIS, block funding arrangements provided the opportunity for service providers together with service users to determine the priorities for service delivery, taking into consideration the unique differences of service delivery by each service provider. Thus, Sharing Places was able to provide people with specialised transportation needs with vehicles customised for their needs and shared across the 159 people accessing the service. The vehicles are an essential component to ensure people with high and complex support needs have opportunities for community inclusion, and valued roles within their community alongside other members of the community. Having access to specialised vehicles is also essential in order for participants to have opportunities to develop and grow relationships within the community, and to contribute as active members of their community.
The lack of funding for transport under the NDIS has meant that the cost of vehicles needs to be covered by either the provider or the participants. There is currently extreme financial pressure on the organisation’s overheads to cover the absences that are not claimable under the NDIS, plus staff training being kept at a minimum requirement in order to adequately support people with very high and complex support needs, and providing for shared specialised support equipment (such as change tables, hoists, vehicle modifications, and augmentative communication aids). This being the case, Sharing Places has passed most of the vehicle costs to participants under a user pays system. While this has been successful in ensuring the vehicles are available for use by participants, it has come at a high cost for participants and, in many cases, extreme pressure on families financially.
Whilst the NDIS recognises people requiring specialised transportation and allows for Core supports to be used flexibly to cover extra transport costs, this is not necessarily provided for within their plans without compromising their other Core supports.
Pressure on Families
Since the introduction of the NDIS in 2014, the increased pressure on families has risen to a point where it is becoming unbearable. The trial phase saw families spending an enormous amount of energy in having people deemed eligible for the Scheme; then making short, medium and long term goals with their loved ones; going through an extremely thorough planning process for first plans; navigating the system of support coordinators, plan managers/self-management, alternative support providers, changes in SIL providers; and settling into a brand new world of disability support. After this, the pressure on families only increased. The NDIS surged forward with messages of opportunity and new beginnings, and families worked extremely hard to keep up alongside this surge forward. However, there were so many barriers in meeting the high expectations of the initial
forward surge of the NDIS and while the momentum of families was taking time to build and flow through, the NDIS’ momentum then became waivered. Families were not provided with enough time before they then received messages of underspent funding in plans and the cessation of support coordination. This came at a critical time when families were becoming optimistic about the future. After this, the pressure on families increased even more. Annual planning reviews are now a source of extreme anxiety because there is no continuity from one plan to the next. Support for families is more limited than ever due to the cessation of support coordination, limited resources of the LAC provider, and providers having less and less capacity to support the required.
On top of this, there are added stresses placed on participants and their families by all of the ad hoc individual issues that pop up randomly, such as plans being reviewed by the NDIA mid-plan without the families knowing that this is occurring; or funding being cut from the plan (in some cases by $80,000) overnight without any explanation.