Submission to the Joint Standing Committee on the implementation, performance and governance of the National Disability Insurance Scheme (NDIS) - Planning
28 August 2019
From: James O’Brien
President
Prader-Willi Syndrome Australia
e. info@pws.org.au w. www.pws.org.au Mailing address: PO Box 92 Kew, Vic 3101
ABN 13 100 005 561
Registered: A0040590E
- Introduction I represent people who have Prader-Willi Syndrome (PWS), their parents and supporters. People with PWS have a lifelong need for disability supports from the NDIS and other sources. We welcome the opportunity to contribute to this very important consultation1 at the invitation of the Joint standing Committee of the Implementation of NDIS.
I will provide a general explanation about PWS to improve your understanding, and respond to the specific issues and questions raised in the consultation scope, from the PWS perspective.
Prader-Willi syndrome is a rare, life-threatening condition. It is a complex, multistage genetic disorder affecting multiple systems in the body. It significantly impacts on behavior, learning, mental and physical health. People with PWS exhibit high anxiety, complex and at times challenging behaviours and cognitive dysfunction throughout their lives. They have poor judgement and are socially isolated. Whilst they have variable developmental delay, they all have significant cognitive and functional impairments. A defining feature of PWS is malfunctioning satiety. They therefore present as always hungry, will constantly food seek and suffer from hyperphagia and readily gain weight. There is usually genetically related abnormal food seeking behaviour.
‘BEST PRACTICE GUIDELINES FOR STANDARD OF CARE IN PWS’ have been
published, for use internationally. More successful outcomes are achieved when service providers, educators and others adopt the specialist skills and techniques needed to support people with PWS
People with Prader-Willi Syndrome (PWS) typically die young, due to complications associated with obesity. However, when PWS is managed well, quality of life and life expectancy is significantly improved and they can live a more ordinary life. People with PWS need life-long support specifically designed to improve access to mainstream services and to actively participate in the community.
In summary, PWS is present from birth, is complex and is both variable in presentation, and within an individual changeable over time. Therefore, people with PWS will need intense, responsive and flexible Plans from the National Disability Insurance Scheme (NDIS), throughout their lifetime.
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Purpose Feedback provided in this submission refers to the NDIS planning process for people with PWS. It refers to First Plans, subsequent plans and unscheduled plan reviews. Its purpose is to improve the process that people with PWS and their support networks need to go through to gain reasonable and necessary support from the NDIA to enable greater participation in the community and better wellbeing outcomes.
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Response 1 The Consultation Paper was available from the web page https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/NDISPlanning www.pws.org.au
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The PWSA response to the Standing Committee’s investigation into NDIS Planning, reflects both positive and negative experiences that members have had with the planning process. This response makes particular reference to the following aspects of planning.
a. Experience, expertise and qualifications of planners Due to the multifaceted nature of PWS, it is important that highly skilled planners are involved in each phase of planning. Members of PWS Australia (and its affiliates) have found a lack of transparency when trying to establish the credentials of the planners who have been allocated. Some PWS members have received a negative response when seeking clarification of a local area coordinator’s suitability to assess complex cases. As such, some have bypassed LACs to request senior NDIA planners to assist with the planning process. It appears when senior planners are involved with the planning process, the plans have been more relevant and acceptable to recipients. With the right planner, many families have felt that the funding for their participant meets their needs.
Recommendation:
The skill and experience levels of planners working with participants who have PWS must be high. Planners should be transparent in explaining their credentials when asked. This is important in the early days of the Scheme, when consumers have too little experience themselves to trust the process, and may have had bad experiences with funding bodies in the past. Planners with PWS knowledge must be available in rural and regional areas, as well as metropolitan.
That is, appropriately qualified and experienced planners should be available to assist people with PWS in all aspects of their planning process.
b. Ability of planners to understand and address complex needs PWS is a rare condition with many facets. The interplay of PWS characteristics has a cumulative, negative impact on functioning. A participant with PWS would have provided numerous reports and assessments from a range of multi-disciplinary health professionals and support staff. Each individual report will address specific limitations e.g. a speech therapist assessment will focus on language development, phonetic skills etc, whereas a physiotherapist assessment will focus on muscle tone, coordination etc. All would be individualised and specific to the writer’s expertise. It is unlikely that any will address the combined impact that each functional limitation has on the individual. Therefore, it is crucial that the planner take a holist approach when considering assessments and reports. Furthermore, there is a significant administrative component to supporting a person with PWS which must also be taken into consideration. See case studies in Appendix 1.
Recommendation:
Members of PWSA have an expectation that Planners will be given time by their employers to educate themselves about PWS, before meeting their participant. For example, whilst every person with PWS is an individual, there is a commonality of many characteristics, such as communication style. Therefore, the planner should use the resources2 that have been made available, to ensure that they meet the needs of the participant, right from the start.
Planners need to take into consideration additional requirements such as administrative support.
2 http://www.pws.org.au/guide-for-planners/
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c. Ongoing training and professional development of planners During 2019, PWS Australia had a rare opportunity to contribute to the development of a training video for NDIA Planners. People with PWS were thrilled to be able to give their point of view and provide insights into this complex condition.
PWSA would like to have more confidence in the training of planners in relation to PWS, and encourage them to access the PWSA website. The website has a range of resources including a guide that has been designed to assist planners when preparing plans for people with PWS.
Recommendation:
Members of PWSA have an expectation that the NDIA will ensure that their planners, and members of the Technical Advisory Team (TAT, who it is understood, support the planners), have ongoing professional development opportunities to learn more about PWS. This would ideally include: Members of PWSA collaborating on the creating of training materials A representative from PWSA being invited to brief staff on their training days A representative from PWSA being invited to have ongoing consultation with the NDIA TAT when even more complex cases arise
d. Overall number of planners relative to the demand for plans There appears to be a shortage of senior planners who can assist with complex clients. Some PWSA members have had plan review meetings scheduled after their current plan ends, which can lead to gaps in services. It has also been reported that planners do not always follow up as promised. This points to a lack of time allocation, or under-staffing or both.
It should be noted that many people with PWS need year to year consistency with their NDIS plan. These individuals would be best served by plans that run for say 3 years between reviews, coupled with annual CPI adjustments. This extended plan period would increase the reach of the pool of skilled NDIS planners and reduce stress on the participants and their family/support network.
Recommendation:
The NDIA should engage more permanent staff who can manage the volume of planning activities in a much more timely manner, to minimise plan gaps, plus build up their knowledge and expertise of PWS over time.
The NDIS planners should have the training, authority and willingness to recommend Plan terms of greater than 1 year, where appropriate.
e. Participant involvement in planning processes and the efficacy of introducing draft plans Planners have been good at appropriately involving PWS participants in planning meetings. They have been respectful of participants. However, people with PWS always have some level of cognitive impairment, and need close support through the planning process and beyond. There have been some problems:
At times, the planning for a person with PWS has been compromised by the planner who has failed to inform the participant’s Nominee or other significant supporters (eg. family members) that there is a meeting scheduled. Whilst many people with PWS are articulate, they have executive brain function impairments. This, combined with their confabulation and inability to foresee consequences that will have
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an adverse impact on their own best interests, means a trusted supporter needs to be closely involved in the planning process; Planners have not been providing drafts of plans despite PWS being a complex condition and despite a draft being requested. There have been errors and misunderstandings in final plans, which is leading to a lack of trust in the planning process.
There is a strong feeling amongst members that, to support their participant, they had to do pre-planning training to be able to engage effectively in the planning process. There is also a sense that the participant’s supports have to know the right NDIS jargon, in order to be heard by the planners. This should not be the case. It is concerning to PWSA that some PWS participant supporters who could not do training or are from non English speaking backgrounds may be at a serious disadvantage in the planning process.
Recommendation:
People with PWS and their carer or support worker should be included in the planning process at all stages. Draft plans must be supplied before finalisation, with enough time to correct mistakes before the new plan date passes.
Planners should step up to assist the participant (and their supports) during meetings, to ensure that the novice or uneducated applicants also get the funding they need. The planner should not rush a meeting, but make sure they educate and provide a full explanation of the consequences of certain responses to the WHODAS, or other questionnaires used in funding assessments.
f. Incidence, severity and impact of plan gaps Late planning meetings have contributed to gaps in plans and service provision. This has the potential to create undue stress and anxiety for participants and their supports. Continuous coverage of services for people with permanent disabilities is logical, and gaps in plans should be avoided.
Members have reported being three months out of pocket having to pay for continuity of services themselves. They are concerned for others who do not have private means, and their participant has to go without services.
Recommendation:
The NDIA should ensure there are no plan gaps by either holding review meetings in a timely manner, or backdating Plans, with enough funding in the new Plan to cover whatever the expenses were in the gap period.
g. Reassessment process, including the incidence and impact of funding changes It should not be perceived that unspent funds in a plan are not required. It is just that changing the daily activity plan of participants with PWS is very gradual process of trial and error, and matching suitable staff to the participant. But once introduced, consistency and continuity of services is essential. People with PWS can have suddenly changing needs (for example, a mental health episode). Some have a vivid ideas and aspirations and they may well change their goals during the period of a plan. It would not be productive to keep spending funds on an obsolete goal, but it would be constructive to redirect funds towards a new and motivating goal. The above circumstances may or may not require a reassessment mid-plan.
Recommendation
The NDIA needs to have senior planners available so that they can conduct timely reassessments if needed. In addition, the NDIA must accept that prioritisation of existing funds may need to be used more flexibly than anticipated during a plan period.
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h. Review process and means to streamline it Planners must understand that new services plans will take a longer period of time to introduce and consolidate, compared to other plans of similar complexity. Participants with PWS are typically routine-dependent, and the introduction of new support services or allied health personnel must be occur over a period of time. It is an evolving process to consolidate, before new disability support workers or disability support services are established in the daily routine. The unpredictability of service continuity from one plan to another is stressful for the participant and their supports. For example, a person with PWS who has been working in a supported employment environment, can unexpectedly be given less funding. The ‘employer’ will then say to the participant that they cannot attend the same hours as they used to. This is a major blow for the person with PWS. To them, they feel that they have been demoted. It is very demoralising for anyone, let alone someone who cannot grasp the concept that the cause is a reduction in NDIA funds, and not their performance.
Recommendation
The NDIA must recognise PWS as a complex condition and provide baseline funding, as the starting point. After that detailed reports provide more evidence for the extra funding needed for the person with PWS to live an ordinary life.
i. Incidence of appeals to the AAT and possible measures to reduce the number The total incidence of appeals in the PWS community is unknown at this time. Where it has occurred, the availability of the appeals assistance avenues have been of prime importance. Members have found the whole NDIS process complicated, time consuming and inconsistent. The appeals process only adds more stress and confusion to an already significent support network burden. The participant with PWS who has cognitive impairments cannot do an appeal themselves. Neither can the lay person hope to be able to navigate the appeals process alone, to ensure their participant is not left under-funded.
Recommendation:
The members want reliable access to appeal resources, who can offer face to face assistance in a timely manner, either: access to a skilled disability advocate who acts as a support person, and/or access to funding for legal services, where a case raises complex or novel legal issues
j. Circumstances in which plans could be automatically rolled-over PWS is a complex condition with ever changing needs, into adulthood. Generally, as a child with PWS gets older, their physical capabilities improve. At the same time their behavioural and social functioning departs from that of their peers, and they need more support. As such, plan reviews should occur annually in childhood, with the likelihood that functional limitations will become more pronounced and funding needs will increase.
Adults with PWS need to live in Specialist Disability Accommodation (SDA) with Supported Independent Living (SIL) funding. As such there is a minimum amount of baseline funding they will predictably need. This portion of a plan could be rolled over. The participant’s Nominee or other advocate could indicate to the NDIA, ahead of the planning meeting, whether there is likely to be a request to change the SDA and SIL needs from the previous year.
Once a lifestyle pattern has been established for an adult, and accompanying costs have become apparent over a number of years, then a fixed recurrent funding amount could be determined.
Recommendation
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Funding for services should always be rolled over in cases where the new plan has not been made available in time. This will ensure continuity of service, and avoid an undue administrative burden on the participant and family, or other supporters. The functional impairments do not disappear on a certain date.
That any potential to establish a recurrent funding amount should be considered where appropriate.
k. the circumstances in which longer plans could be introduced Adults living in SDA with SIL could have longer plans, particularly if their lifestyle has been established. A proviso would be that, should a review be needed, it is done quickly. This is because PWS is a changeable condition, with complex health, behavioural and psychosocial impairments caused by the PWS genes.
l. Adequacy of the planning process for regional, rural and remote participants At times, members have found that a service provider has to both assist with the plan and deliver subsequent services. This can work well if the provider is able to align their delivery with the complex needs of PWS. It fails when that competent person leaves the area or there is no provider with the ability to adjust to the participant’s inability to comply. The limited pool of staff choice for disability support workers in country and regional centres limits the choice of services and personnel. The high skill level required to work successfully with a participant with PWS means that providers are not always able to allocate suitable staff to work with the participant. This often means that extra staff have to be allocated so a 2 support workers:1 participant ratio becomes reasonable and necessary, or staff have to travel from larger regional areas to provide the services.
From a country member, “the NDIS is hindering the process of obtaining services for the vulnerable. There is no communication between the planner and the self-managed like me once the money is granted, and we are left to our own devices [without any training support, like a LAC, nearby]”.
Recommendation
Both these scenarios (extra staff, or above benchmark staff travel) should be reflected in the plan funding. It should also be recognised at plan review when the unspent funds are still desperately needed and should be reissued.
m. Other related matters Underscored by the complex multi-system, multi-stage nature of PWS, members reported that, at life-stage transition times, the planning process was fraught. Members also reported problems when switching from the old State base system to the new NDIS scheme, and problems when progressing beyond their early childhood program. Despite parents repeatedly following up with the NDIA, planning meetings were invariably scheduled late and caused gaps in services.
People in rural areas found they had to travel to the planner. This is not ideal as often there are other family members who need caring for or the participant does not cope well with long trips to stressful destinations. In the city, planners are able to come to the homes of PWS participants, due the complexity of behaviours.
A member in a country area reported that because of where they live, providers all want to charge travel. However, the member reported that they know the service provider actually lives in hamlet X, and travels to a bigger town ‘Y’, to work. The provider still wants to charge travel as if she is coming from town Y, even though provider and participant both live in the same hamlet!
A member stated, “The amount of admin I have found this time around is astounding and it should be covered. I also believe training and development money should be allocated to families to keep up to date with advancements and research in the [management of the] disability”. www.pws.org.au
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- Conclusion PWSA is committed to supporting children and adults with PWS through the NDIS planning process. To this end, it has created a variety of resources to support parents, Nominees and the NDIA staff. These can be found on our website at www.pws.org.au. Further resources are planned, subject to resource development funding availability.
PWSA is concerned to reduce the burden and uncertainty on participants and families around all aspects of NDIS planning. PWSA would welcome contact from the NDIA to identify improvements to the current situation with planning expertise and availability.
James O’Brien
President
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Appendix 1 Extra service requirements are driven by PWS characteristics.
Case study 1 Scenario - the PWS participant: lives in Supported Disability Accommodation is very anxious about spending money unnecessarily has requested a medical appointment for a perceived illness, with booking supported has been supported to book a taxi to go, with a support worker, to the appointment is not going to their regular day program, and gave short notice, so will incur a fee The problem: the taxi arrives early for the pick up the participant perceives, rightly or wrongly, that the taxi driver has switched on the meter early, thereby generating a higher fare her reaction escalates into challenging behaviour she refuses to get in the taxi or go to the medical appointment that day The consequences: annoyed taxi driver needs to be placated and cancelled Dr’s appointment needs to be cancelled and rebooked, for as soon as possible a skilled support worker needs to de-escalate the participant’s behavior, and be with the participant all day a non-attendance fee is charged to participant, who cannot comprehend penalty fees, causing challenging behaviours due to concern about spending money repeat attempt to attend the medical appointment the following day; but taxi company has ‘black mark’ for that address, or delivers a slower service than for the general public. The taxi coming late means participant is anxious about being late for appointment and anxiety driven behaviours starts again.
Case study 2 Scenario - The PWS Participant: uses public transport for routine trips has a special disability travel card, which has the funds topped up periodically does not like to admit that they have caused something to go wrong is not able to solve problems in an organized or effective manner The problem: the participant has lost their travel card they tell the support worker someone at the day program must have taken it The consequences a skilled support worker contacts the day program to establish whether a theft has occurred, or whether the card is just lost card is not located and a support worker must obtain funds, and accompany the participant to a designated location to ensure the correct type of replacement card is purchased. This must be done in time for its use the next day, or the participant will become highly anxious and challenging behaviour can result the support worker must go on the internet to cancel the lost travel card the support worker must get a form off the internet to get the money from the lost card transferred onto the new card the support worker accesses printer and paper, prints form, fills it in, finds envelop, goes to post office for stamp and posts hard copy transfer request the process is repeated as the card gets lost periodically occasionally, the original card eventually turns up amongst the participant’s belongings, because the participant was not effective in searching for the misplaced card. It was not acceptable for the support worker to help the participant search for the card at home because the participant was insistent that they did not have the card.
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