NDIS implementation issues impacting Tasmanian families with children with disability | External submission

The Association for Children with Disability (Tas.) Inc.

83A Melville Street, Hobart 7000 GPO BOX 730 HOBART 7001 Phone: (03) 6231 2466 Email: admin@acdtas.com.au FREECALL: 1800 244 742 ABN: 3209 1767 455

Submission to the Joint Standing Committee on the NDIS - General Issues Inquiry

Thank you for the opportunity to provide this submission on behalf of the Association for Children with Disability (TAS) Inc. (ACD) staff, Board of Management and Parent and Carer membership.

ACD is a not for profit, state-wide specialist disability family support service. Since our inception in 1998, ACD has been providing professional advocacy, information, support and community and workforce education to hundreds of Tasmanians annually who have children and young people with complex disability and or requirements.

ACD has been involved with the NDIS since it was called DisabilityCare and was the first organisation in Australia, as a provider of funded Advocacy, to register with the NDIS (September 2013) to supply Support Coordination. ACD also in consortium with the Speak Out Association of Tasmania facilitates DSO funded (NDIS) Peer Support Network sessions to parents, carers and family members of people with disability across Tasmania.

With such regular interaction with the scheme and the parents and carers and young participants with high and complex needs involved with it has come a requirement to know and understand the inner workings of it. As such I believe that we can confidently submit to this inquiry, inform on issues and provide suggested solutions for NDIS improvement.

Whilst the NDIS has significantly improved a person with life-long disability and their families’ financial capacity to purchase some needed services, supports and equipment and technology, there is much work to do in the coming years to build Tasmania’s capacity to meet these needs, and to ensure that the scheme’s implementation issues and bureaucratic processes do not result in an increase of the barriers to those who are the most vulnerable participants within the scheme.

A Case Study

Joan is an adolescent with severe disability including physical disability, learning disability and obsessive behaviours and anxiety. Her family and primary supports are her father and sister.

Joan has attended therapy services since she was a toddler, often multiple appointments a week. She has also needed to go to Melbourne a number of times for specialised surgery to help habilitate her unpredictable muscle tone. Currently, Joan attends physiotherapy three times a week to help maintain the strength in the muscles in her legs and back so that she can move from her wheelchair to other seats without a hoist. If she doesn’t maintain her strength she will need a hoist and two people each time she needs to move from one position to another.

Joan is in high school. She went to her local primary school where she received support to attend classes and some individual time. Joan tried her local high school but due to a number of factors, her Psychosocial symptoms and behaviours escalated and her placement at this school broke down. Joan now attends a support (special) school.

Joan can have times of very challenging behaviour. She can get upset and angry to the point that she will attempt to hurt other people by throwing items, screaming, pinching and ramming people with her wheelchair. This is what her father calls her ‘black zone’. Joan has medication to help her calm down when she enters the ‘black zone’ but often this takes quite some time to take effect - up to three hours. During this time, whoever is caring for Joan needs to be very aware of their own safety as well as that of Joan’s. There have been many instances in which medication has been insufficient to calm Joan and she has been taken to the RHH for Emergency Care in these circumstances.

Joan’s older sister is going to university in her second year of study. She would like to be able to stay at home but feels that this is not possible because of Joan’s unpredictable and violent behaviour. Joan’s sister is currently on the waiting list for public housing.

Joan’s Dad has been caring for the two girls on his own since Joan was a toddler. He has a number of health issues of his own, including physical issues from lifting and moving his daughter for the past 13 years. He has had multiple surgeries to repair hernias with no success. Dad’s health is also of concern and doctors have recommended that he stay in hospital for an extended period of time, however, he does not feel that he can do this due to Joan’s high support needs. Joan’s Dad has tried to keep in employment throughout this time as this is an important part of his life. Currently he works part time.

This is partly enabled because Joan and her dad receive help at home some mornings and afternoons, after school to take Joan to therapy and other activities. Joan also receives minimal in-home respite care.

There is considerable uncertainty for Joan and her family. Joan turns 16 this year and Dad is ready for her to move into her own accommodation as he questions his ability to continue to care for Joan in the long term with regards to her physical and emotional health. He sees that it is important that Joan is transitioned to long term housing before his ability to look after her deteriorates further. He has been able to get Joan on the public housing waiting list but there is no word on how long this may take to find her accommodation. He is trying to find out information regarding getting Joan’s support from a Disability Support Pension, but he has been told there is a six month wait on these applications at the moment. All of these processes take a lot of time and organisation on his part.

Joan and her Dad are referred to an ACD Advocate. There are many presenting individual issues as well as system issues that require attention. Liaison with the State Government, Disability Services, needs to occur immediately to flag this family and determine what State funded crisis options (if any) will be available to the family in the event of Joan’s Dad being hospitalised.

Joan’s Dad’s physical health continues to deteriorate as does Joan’s relationship with her sister. The Therapy provider cannot supply Therapists on a regular basis, the service providing support to Joan has a high turn-over of staff and regularly cancel shifts. Joan’s family has reached crisis point whilst in receipt of an NDIS funded package.

The NDIS and Crisis - NDIA local staff report that the NDIS does not respond to crisis - “the NDIA staff provide a plan with funding and the community responds”. Due to a lack of staff resourcing and inefficient process the NDIA may take up to 3 months to review and respond to Joan and her care givers situation after a Plan Review Request is submitted by an Advocate with consent. This is not the role of an Advocate, but on initial investigation the family is found to have run out of Coordinator of Support hours and if the Coordinator of Support continues to work through this time there is no guarantee that they will be able to retrieve monies owed from the NDIS.

There are many things that will require amendment in the plan if the family is to source, train and retain needed supports and the family must evidence their need to the NDIS for these plan changes to be deemed appropriate and necessary.

The NDIS does not supply crisis housing assistance. The Advocate follows up Joan’s place on the Housing list and investigates mainstream social and crisis accommodation options, of which there are none that are appropriate or that can source housing quickly and easily (i.e. as required in the next 2-4 weeks). The NDIS, the Minister for Housing as well as the Minister for Disability is contacted and the person is highlighted to the State Government and to the Disability Gateway. The State Government Disability Services and NGO funded Gateway systems may not be available after the completed roll out of the NDIS in 2019. People under the age of 18 are particularly difficult to house and historically in Tasmania their guardians have been required to relinquish their care to the State (Child Safety system) and be treated within an abuse and neglect framework, or refuse to pick them up from a block funded Centre Based Respite (no longer an option after 2019 as these services cease to receive block funding) or leave them in Hospital or Nursing Homes following a serious illness or accident.

Four years into the NDIS rollout and little has changed in Tasmania to suggest that a person requiring crisis Housing will have their needs met by the community and disability sectors. Whilst this remains the case one can only assume that the Medical Emergency and Child Safety systems will increasingly continue to be inappropriately used.

NDIS does supply funds for Respite - Joan has never accessed centre based respite before and her Dad is fearful that this will increase Joan’s anxiety and therefore her challenging behaviour. The Advocate discovers that the current in-home support provider is not confident of supply of staff due to Joan’s behaviour. They source another organisation and start negotiations, although this is not their role there is no one else in the community that will assist and this is essential to keeping the family together at this point. A successful transition to Respite will take some planning and time; staff will need to be sourced and training will need to occur in order to meet Joan’s support requirements (including effective behaviour management). To maintain Joan in her family home and once staff are available and trained she may use her annual NDIS allowable respite allocation within a 4 month period, meaning that another plan review will be required soon after a new plan has been made. The family will be required to be involved in this review process and to go over their story again and evidence their need.

Not for profit disability service providers are reporting that it is no longer sustainable in many cases to supply support to Participants who present as challenging, as they are unable to meet the scheme administrative requirements for claiming and receiving monies and associated costs of care; high staff turnover and recruitment of a mostly casual workforce, the increased staff training requirement and outside direct support hours meetings, the greater need for staff management, support and supervision, and the increased risk of staff injury leading to a higher workers compensation insurance premium.

The NDIS and Coordination of Support - When the plan is completed, following hours of preparation and evidencing of need, the NDIS fund Support Coordination for Joan for 26 hours, 1 hour a week for the life of the plan (6 months). If the Support Coordinator is to assist the family through this period of time and prevent breakdown during this crisis period, these funds will probably be utilised in a 5 week period, meaning that the Support Coordinator will need to submit a plan review to gain

needed funds to enable ongoing assistance to the family. The family will be required to be involved in this review process and to go over their story again and evidence their need for a Coordinator of Support.

Due to the complex requirements of the family they will need a Coordinator of Support to assist them to act as a central point to prevent them from breaking down and to build family/community/service capacity and interface with Education, Therapy, Medical Health, Centrelink, Housing, Carer and siblings support and counselling options, and Disability Specialist providers.

Funding for Coordination of Support is supplied by the NDIS for capacity building, is goal based and time limited and not prevention focused or risk managed. NDIS funded Coordinators of Support are allowed by the NDIS to be involved in crisis response under these circumstances but are not to act as a Case Manager, a single point of contact for all of the people involved in supporting Joan and her Dad.

Lack of services and trained and skilled workforce. The only reliable service for Joan at this time is Education (state Education funded). Therapy is funded, but the Therapist cannot supply the number of required Therapy appointment to meet needs. Joan uses all of her annual Medicare allowable therapy. Her therapists report that the NDIS administrative burden on them is taking away their available hours to supply Therapy to Joan and other customers.

NDIS Planning process and unspent funds - The NDIS consider unspent support funds in Joan’s plan and although they have received written reports about the reasons for this; insufficient and untrained workforce and lack of available services, Joan’s Dad (in a very stressed and with help from an Advocate) presents the case for continuation of these funds in the new plan.

NDIS Planning process and records of evidence and profiling - Joan’s Dad is required to answer a series of questions aimed at determining Joan’s level of function, which he is very upset about because he has provided this information before along with regular medical and therapy reports. The planner says that they she cannot access the reports and that the questions must be answered each time the planning process takes place. Joan’s Dad is distressed that he is required to note Joan’s limitations in front of her.

Coordination of Support and the plan forward – the Coordinator of Support service began again following receipt of the new plan. They undertook an assessment of the situation and made suggestions that may assist the family in the interim to continue to supply care and support to Joan.

All things in it were deemed as sufficient to gaining needed support in the interim
Source a Psychologist to assist with Behaviour Management assessment and recommendations and planning and work with school, Dad, Support staff and Joan’s sister to train and implement the plan consistently
Transfer to a new and larger in-home support provider to improve staffing reliability. Decrease the need for Dad to provide physical support to Joan
Decrease Dad’s need to provide personal care support and increase support staff hours for personal care, with a focus on improving Joan’s functional capacity in this area
source an OT to review the home residence floor plan and recommend modifications to enable an up-stairs and downstairs separation of living between Dad, Joan’s sister and Joan
Encourage Joan’s sister to review other appropriate Housing options
Begin transition to centre based respite
Book in advance 6 blocks of Respite for 24 hours each month

Joan’s situation now – Joan’s Dad has a compulsory hospital procedure and rehabilitation period scheduled in 2 months’ time. A decision is pending following another NDIS plan review process seeking high levels of support to sustain Joan in her home during her Dad’s hospital stay and additional Coordination of Support hours. The House has been modified to enable separation of living. New support staff have been trained and supply regular support to Joan in-home and in the community. Joan is being effectively assisted to manage her behaviour. Joan remains on a Housing waiting list. Joan’s sister has moved to University Accommodation.

NDIS and Community service contraction - Since the schemes inception, ACD has witnessed a slow withdrawal of community services as the public, mainstream, and universal service providers are affected by misunderstandings about the NDIS and its interface with government agencies and community organisations and programs. Parents report that Doctors and Medical and Therapy Professionals have little to no understanding of the scheme and that Government agency staff often suggest that all funds for an individual with disability should come from the NDIS.

Professionals (especially allied health) and Services, who could be providers report choosing not to register as providers or ceasing to offer services to NDIS Participants following cash flow issues, due to claiming difficulties and time spent on this as well as being unpaid for time in assisting parents and carers and people with disability with NDIS system and process navigation.

Other providers report a reduction of service options and less flexibility due to individual client numbers not being great enough to meet the financial demands of service on-costs and management systems on top of direct care training and support.

Many providers report no longer being able to purchase and maintain vehicles to transport Participants for activities and respite.

Providers report needing to close some group accommodation as they are not financially viable; leaving parents and carers to resume responsibility for accommodating their adult child/ren.

For Profit organisations entering the Tasmanian market are testing the market and cautiously prioritising service provision that attracts a higher hourly rate as well as supply of service to Participants with non-complex requirements.

The Administrative Burden of the NDIS 2017 Parent perspective - ‘the scheme has become impersonal, to have an NDIS plan is to have an unpaid part time job that is bogged down in frustrating and stressful bureaucracy and bureaucratic process. I already have an unpaid part time job as a carer. I would very much like just to be a Mum.’

Within the Coordination of Support (CoS) role ACD is involved in assisting families and young Participants to manage their plans. The plan hours provided for this vary from 10-17. The following dot points are essential scheme knowledge and administrative process knowledge and practice that parents and carers and people with disability need to become expert in for self-management to occur:

Navigate the NDIS website
Undertake Pre-planning work
Know about ECEI and other mainstream funded streams before accessing the NDIS
Determine eligibility to Access and source reports for evidence
Understand how to become a Plan Nominee

Understand your family members needs and functional measures
Research NDIS support categories
Meet with LAC for information collection for the plan
Wait to receive the plan when it is generated, in the mail and on a MyGov account
Register with MyGov and link to your NDIS account, if you have more than one child, gain more than one email address
Review the plan received against need and convert dollar amounts to hours or equipment to prepare to source and meet with providers
Determine how each component is managed, i.e. agency, plan or self, to understand who is paying for what and what this means in terms of process. Understand the restrictions on how products and services can be purchased.
Research community and mainstream services and understand how the NDIS interfaces with these services. Prepare for negotiations with these areas in case they suggest that the NDIS should take full funding responsibility.
Understand NDIS terminology and determine what impact it has on you. Determine who your informal networks are and what in-kind supports you have and the implications of this.
Source providers and request copies of service agreements and consent
Negotiate support supply with providers and then give them relevant plan details so they can make a service booking.
If you are unable to source needed equipment, providers or support staff – explore options, innovate and develop a plan to build the capacity of the community to understand and meet your needs
Monitor services received and funds spent from the plan as well as provider billing against service agreements and the plan
Problem solve when providers are unable to retrieve funds from their plan
Report to the NDIS against plan goals
Ensure how your funds are being spent or have clear evidence of why they haven’t been spent or new things that you will require in the next plan
Understand the Plan review (PRR) system and complete this paperwork with evidence and monitor the status of your PRR making sure that your funds are not frozen when your PRR is submitted
Pre-empt any documentation required or questions that may be asked for your Plan Review that will assist you to evidence needs
Understand how to cease with a provider when you choose to and what your obligations as well as theirs are in these circumstances
Understand the provider portal and provide advice to providers on how to use it, make service bookings, lodge a payment request, change the date of bookings, and fix an error/s (cancel, reduce, end date, or zero a service booking).
Provide NDIS finance or engagement contacts to providers when they inform you that they cannot make a booking or access funds and may need to cease support.

ACD is unable to find another example of a Government funded system where this level of administration burden applies to the person it is designed to serve. The NDIS since inception has changed rapidly and administrative expectations on the Participant and their parents and carers have vastly increased. Those with Coordinators of Support to assist with this burden report that the hours that they receive for this support are being reduced with each plan. Parents and carers with children and young people with complex needs report that the system itself is decreasing their caring capacity and having a negative impact on their wellbeing.

The Planning process and people with limitations in cognitive functioning and their parents and carers and nominees.

The NDIS planning process is designed in a way that presumes the person with disability (Participant) has capacity to represent their own needs accurately in order to gain needed funds in their plan. This has led to many vulnerable people receiving plans that do not meet their needs. Many people with limitations in cognitive functioning will require additional assistance to effectively take part in the planning process. Many lack insight and capacity to assess their own needs with a high degree of accuracy and may also have a nominee or parent or carer that is not able or not prepared to discuss their needs in front of them at a planning meeting.

The NDIS worked hard at inception to bring this cohort into the scheme as it was recognised that people in many cases were not receiving any assistance and were incredibly vulnerable and at risk of:

self-harm (health impact)
physical and mental abuse
social isolation
depression and/or mental illness
vital relationship breakdown
becoming homeless
becoming involved in the criminal justice system
being excluded from Services and Supports

And may have:

challenging behaviour and or dual diagnosis or issues understanding how their disability impacts on them
low to no literacy
significant cultural barriers to community access
across system involvement

The need for Advocacy and Support for the most vulnerable

Initially there was great optimism from parents and carers and a mostly understanding view of the scheme’s shortfalls due to the promise that no one would be worse off under a NDIS, but some scepticism and concern is beginning to take hold. ACD Family Advocacy demonstrates a nearly 250% increase in the number of parents and carers requiring help with NDIS system issues, processes and complaints in the past 6 months. 50% of families accessing ACD support report that the scheme is too difficult to navigate and therefore not accessible.

Some parents and carers report experiencing a gap in service at a level greater than pre NDIS times in Tasmania when seeking assistance from the community to meet their needs of their child/ren with challenging behaviour and/or complex needs.

ACD receives funding from the State Department Health and Human Services (Disability Services agency) for Advocacy, until July 2019. Funding for ACD advocacy will then be in jeopardy as State Advocacy funds were included in the bi-lateral agreement between the Tasmanian State Government and the Australian Government targeted for total transition to the NDIS by July 2019.

In 2016/2017 ACD supplied Individual Advocacy to 233 parents and carers and responded to 533 requests from parents and carers and significant others in the community to assist their self-advocacy and system navigation and understanding. As the only disability specific family service that supplies Advocacy, the need for our services continues to grow annually.

Social convention is that Parents and Carers or guardians and responsible adults are expected to protect Children’s rights and to speak on their behalf. ACD Advocacy exists based on knowledge that

some Parents, Carers, Guardians or Responsible Adults cannot; do not; can but require additional information, or need assistance to fulfil this vital role.

On-going and effective Advocacy, both systemic and individual, on behalf of parents and carers and people with disability who are incredibly vulnerable to any additional stress, is required at an increasing rate for issue resolution and informing and improving the NDIS system as it rapidly changes. The need for effective representative consultation as the Tasmanian rollout proceeds on behalf of the stakeholders is also evident; with ACD currently unable to meet the demand to respond to the number of requests to consult with or provide a voice for our members and parent and carer stakeholders.

Possible solutions

Increase the number of Allied Health Practitioners available to Participants Expand, fund, increase visit numbers available to NDIS Participants through the Medicare treatment plan system (Chronic Disease Management Plans, Mental Health Care Plan, The Helping Children with Autism Treatment Plans, NDIS treatment plan). Medical Practitioners (Paediatricians and GP’s) would liaise with Therapy providers and appropriately monitor progress. Therapy providers are more likely to sign up to provide services under this system due to the ease of process and payment system.

Planning, Reviews and Communication The current planning system and process should be revaluated to ensure that it works effectively for those with the most significant cognitive limitations.

NDIS could have a flag system on receipt of plan progress reports so that certain indicators trigger (i.e. funds overspent) a plan review, instead of the family or service providers being responsible to request this process.

All service providers with current bookings should be informed automatically electronically when a plan review has been requested and informed of any expected delays.

Parents and carers should be automatically informed of what they are required to bring with them to the review meeting to evidence need, when the review will be and who it is with.

Parents and Carers and people with disability should have the choice to nominate people to represent them at their planning meeting and should have an easy pathway to enable them to provide consent for this to occur, i.e. by email to the Planner.

Planners should have access to an IT system that is capable of electronic allocation and calendared review dates and times, giving an hours preparation for reading progress reports, medical and therapy reports, emails and PRR documentation and other relevant documentation. The NDIS Participant file system should allow for collection of relevant documentation to build a person’s profile, and to prevent people from needing to repeat information and evidence.

Common sense plan adjustments for mistakes made by a Planner or minor amendments required could be approved by a Senior Planner on request without effecting the Participant, at all. Plan reviews could be a standard maximum 45 minutes.

Functional skill assessments could be funded in plans every 3 years for completion by a relevant Therapist and funded through the Medicare system.

During functional assessment, the relevant therapist or medical specialist should according to the capacity of the Participant to engage with the system, make recommendations about capacity and requirements for a nominee for decision making.

Nominee and Planning The NDIS could supply funds to registered Advocacy organisations to offer a plan nominee function with registration by State Government after meeting quality and safeguard requirements.

Where nothing is to change in a plan, a mechanism could be available for a Participant or Nominee to easily request that their plan be rolled over into the next calendar year. Planners to not presume that unspent plan funds mean that these funds are not needed and the reasons for unspent funds must be sought by a planner at request of plan roll over.

NDIS plan adjustments to prevent or respond to crisis The NDIS regional agencies could be given the flexibility at the request of the Participant or their Nominee to approve an increase in hours without a plan review being required for urgently required services. This could occur against guidelines, i.e. when a Participant is deemed to be at risk and require urgent assistance to meet increased or changing needs. Agencies could hold a per Participant emergency fund ($5,000) per financial year to respond in this event, with review and sign off by a Senior Planner with stipulations and safeguards.

Support Funding in Plans Unit prices could remain but the plan could reflect the hours a week available for support and support categories and broken up into weekdays, weekends and Public Holidays instead of total dollar amounts for a year, make the plan more legible to Parents and Carers and Participants. Failing this the NDIS website could have a conversion tool that converts categories and dollars to hours. Parents and Carers and Participants could then more easily determine how many hours of support have been used, and how many remain.

Annual banked hours unused within the plan period could be made available to the Parent or Carer or Participant to convert flexibly to other required service categories approved in the plan (therapy, assessment, respite support, Coordination of Support) without the need for review and within the last 12 weeks of the plan period.

Thank you for the opportunity to provide this submission. ACD Tas. Looks forward to ongoing consultation and offering solutions that may simplify and improve the NDIS system for parents and carers and people with disability.

Caroline Pegg

Chief Executive Officer The Association for Children with Disability (TAS) Inc. On behalf of the ACD staff, Board of Management and Parent and Carer membership

Please don’t hesitate to contact me if you require further information regarding this submission.