NDIA Accountability Project

Needs of people living with epilepsy and their families

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Submission to the Joint Standing Committee on the

National Disability Insurance Scheme

Inquiry into the implementation, performance and governance of the

National Disability Insurance Scheme: Planning

Submitted by:

Epilepsy Action Australia

September 2019

Phone: 1300 029 137

Address: Level 1, 1 Lucknow Road, North Ryde NSW 2113

Fax: 1300 88 68 94

Web: www.epilepsy.org.au

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 1

6 September 2019

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

Inquiry into the implementation, performance and governance of the

National Disability Insurance Scheme: Planning

Thank you for the opportunity to make a submission to the Committee regarding the experiences of people living with epilepsy accessing the National Disability Insurance Scheme (NDIS) with a focus on the planning process. As the CEO of Epilepsy Action Australia (EAA), my submission presents the needs of people living with epilepsy.

Throughout 2018 Epilepsy Action Australia developed a suite of online courses to support people with epilepsy and an intellectual disability. This resource was developed in response to the overwhelming feedback we had from families that they felt the staff supporting their family member in both accessing the NDIS and in supported accommodation and workplaces had little to no knowledge of how to support a person living with epilepsy nor it’s impact on their daily lives. Throughout the process of developing this resource EAA undertook consultations with families, individuals with epilepsy, medical experts in the field of neurology and epilepsy, and allied health experts including Neuropsychologists, Occupational Therapists and Disability Support Organisations. Best practices from international organisations for people living with epilepsy and other disabilities were also considered.

Clearly evident from the research and consultation process, the real day to day impact that epilepsy can have on the ability of a person living with epilepsy accessing their community, participate in social, educational and occupational activities and optimise their independence and autonomy was illustrated. The process highlighted opportunities for improvement which exist in navigating the NDIS planning process; plan review process; as well as implementation of approved plans.

With the outcomes of this research in mind, it is with confidence I present the needs of people living with epilepsy and their families.

If you have any queries regarding the contents of this paper or would like to speak in more detail about the needs of people living with epilepsy, please feel free to contact me directly.

Yours sincerely,

Carol Ireland

Chief Executive Officer

Epilepsy Action Australia

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 2 of 15

Contents

  1. Summary and Recommendations ……………………………………………………………………………………… 4
  2. Background to Epilepsy ……………………………………………………………………………………………………. 4
  3. Consumer Consultation …………………………………………………………………………………………………… 7
  4. Planner experience, expertise and qualifications ………………………………………………………………… 8
  5. Participant involvement in the planning processon …………………………………………………………… 10
  6. Plan review and plan implementation ……………………………………………………………………………. 101
  7. Recommendations………………………………………………………………………………………………………………….. 13
  8. List of Epilepsy related Supports for inclusion in NDIS Plan ………………………………………………..……13 EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 3 of 15
  1. Summary and Recommendations Epilepsy can have a profound impact on the quality of life of individuals with epilepsy as well as their families. The stigma and misunderstanding associated with the condition, combined with anxiety about when and where a seizure could occur, can mean that epilepsy has an impact on the family even when seizures are well controlled.

Epilepsy, a recognised disability when seizures remain uncontrolled whilst on medication, is an unpredictable and episodic condition with over forty seizure types and one hundred epileptic syndromes.

Following consumer consultation, interviews with professionals and review of international best practice, EAA makes the following recommendations:

  1. Mandatory VET accredited epilepsy education of Planners and Local Area Coordinators covering the impact on community access, participation and independence and the available supports for people living with epilepsy to optimise community access, participation and independence

  2. Education and training of NDIS Local Area Co-ordinators and Planners about NDIS Epilepsy related policy content and available documentation and their obligation to inform participants of: options for assessment of impairment of function; epilepsy specific supports; and inclusion of epilepsy training for support workers and Carers in their plans

  3. Adjust the planning process to include a mandatory step requiring the participants review, amend and signs-off draft plans prior to NDIS submission

  4. Regular surveying of NDIS participants experiences of the service delivery specifically inquiring about processes such as who does the identification and negotiation of services, is the plan self-managed or managed by a NDIS provider to identify if participants are being charged for services they are not receiving.

  5. Background to Epilepsy It is doubtful if there is any other medical condition so universally neglected, due to a combination of social stigma, low profile and lack of resources. i

It is estimated that around 800,000 people in Australia will be affected by epilepsy during their lifetime. Currently over 250,000 Australians live with epilepsy and a third of those will remain uncontrolled on antiepileptic medications otherwise known as intractable or medication resistant epilepsy.

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 4 of 15

Epilepsy is a disorder characterised by spontaneous, recurrent seizures and can affect anyone at any time, regardless of age, gender, level of intelligence, culture or background. There are many different types of epilepsies and the impact on day to day living varies widely. There is also a high incidence of disability in addition to the diagnosis of epilepsy.

There are over forty types of seizures which can range from absence seizures characterised by a brief loss of awareness; focal impaired awareness seizures which are often mistaken for behaviours or intoxication with drugs or alcohol; to convulsive seizures where the person becomes unconscious, moves involuntarily and may remain confused and drowsy for a period of time after the seizure.

Epilepsy can be severely disabling in its impact on a person’s capacity to live a meaningful, independent life. While advances in anti-epileptic medications have assisted a large number of people, around 30% of people with epilepsy will not respond to medication and many experience more than 20 seizures per day.

There is a continuum on which a person with epilepsy lives, at one end epilepsy is considered a health issue where the person is well controlled on medication and it has little impact on their day to day functioning and cognitive abilities, at the other end of the spectrum the person experiences frequent seizures with a profound impact on their ability to function and live an independent life. The point at which epilepsy becomes a disability is generally considered to be epilepsy uncontrolled on medication however this does not encompass the small proportion of people living with epilepsy who’s seizures are well controlled on medication yet cognitively and functionally impacted as a direct result of the underlying cause of their epilepsy or resultant acquired brain injury from recurrent and severe seizure activity.

Epilepsy (uncontrolled while on medication) is listed third in the Guide to the List of Recognised Disabilities based on determinations approved in 2005, 2006, 2010, 2011 and 2014 by the Secretary of the Australian Government Department of Social Services.

Department of Social Services, 2014, Guide to the List of Recognised Disabilities, site viewed 20/08/2019 < https://www.dss.gov.au/our-responsibilities/disability-and-carers/benefits-payments >.

Epilepsy is also included in NDIS Disability Types and Description and assessed on impairment of functioning.

“Neurological (including epilepsy and Alzheimer’s disease) Applies to impairments of the nervous system occurring after birth, includes epilepsy and organic dementias (for example, Alzheimer’s disease) as well as such conditions as multiple sclerosis and Parkinson’s disease.”

“Disability groups are a broad categorisation of disabilities in terms of underlying health condition, impairment, activity limitations, participation restrictions and environmental factors. The primary disability is the disability that most clearly expresses the experience of disability by a person. It can also be considered as the disability group causing the most difficulty to the person (overall difficulty in daily life, not just within the context of the support offered).”

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 5 of 15

National Disability Services Limited, (n.d.), Disability Types and Description, site viewed 30/08/2019 < https://www.nds.org.au/disability-types-and-descriptions >.

The NDIS Quality and Safeguards Commission published NDIS Practice Standards: skill descriptors – information for auditors and providers in July 2018 setting out the skills and knowledge NDIS providers should have access to when delivering complex supports to NDIS Participants. High risk of seizure falls under “other support activities that require training but can be undertaken as part of a general support role”.

The NDIS Practice Standards state that

“Support workers often work with people who have seizures and this does not typically require specialist skills provided the support worker has an understanding about the procedures to follow. Where a support worker administers epilepsy medication such as

midazolam,  they  also need  training  in  medication-specific emergency management

procedures. High intensity support is relevant for people who also require emergency post

seizure medication (PRN). Correct administration of  this medication  is  critical and  is

considered a high intensity support”.

The NDIS Practice Standards also outline the context, providers support of workers and the level of knowledge and skills of workers whom they deploy.

“Context: An epilepsy management plan has been developed and is overseen by a health practitioner that includes a description of types, frequency and patterns seizures, triggers; signs to check for before and after seizure; monitoring and recording; detailed instructions on medication selection and administration procedures; emergency management options and procedures.

Providers will support their workers and others involved in providing supports to: Identify and minimize exposure to seizure risk factors; consult with the participant to identify and remove or minimise exposure to conditions that expose the person to risk e.g. risk of burns, falls etc.; observe the person to identify early indicators of seizure and take appropriate action; monitor and record seizure information; follow procedures and exercise judgement on when to call an ambulance and whether and how much PRN medication to administer; demonstrate application of first aid including positioning and cardiopulmonary resuscitation.

Providers will deploy staff with knowledge of: Types of seizures; impact of epilepsy on the

person; common  patterns  or  clusters  of  seizures;  seizure  triggers and symptoms;

appropriate  seizure management  and  control  procedures;  risks  of  related  health

complications associated with epilepsy; factors that increase risk and appropriate methods of control; common methods of emergency management and potential side effects; parameters to guide decisions about when and how much PRN medication to administer; factors that inform interpretation of advice in plan about when to request an ambulance.”

NDIS Quality and Safeguards Commission, 2018, NDIS Practice Standards: skill descriptors – information for auditors and providers, site viewed 20/8/2019, < https://www.ndiscommission.gov.au/sites/default/files/documents/2018-09/high intensity-skills-descriptors.pdf >.

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 6 of 15

More recently the Department of Social Services released a paper How the National Disability Insurance Scheme (NDIS) and health services will work together which included a list of funded disability-related health supports

  1. Consumer Consultation Epilepsy Action Australia sought to understand the impact that epilepsy has on daily life for people living with, and without, additional disabilities and their experiences of their interactions with the National Disability Insurance Scheme (NDIS). The findings of three surveys, which gained insight from a combined total of 1,230 people whose lives are impacted by epilepsy indicate that there are a number of areas of life where epilepsy significantly impacts function and independence for many people and formed the basis of the Living with Disability and Epilepsy Insights Survey Report 2018 (Insights Survey).

Notable insights from the Living with Disability and Epilepsy Insights Survey for participants living with epilepsy without additional disabilities (n=482) include:

  • The majority (96%) of respondents experienced challenges as a result of their epilepsy

  • Anxiety/depression was a challenge most frequently rated with nearly two thirds (62%) of respondents stating anxiety/depression is/had been a challenge.

  • Poor memory was reported as a challenge by almost three in every five respondents (58%) For some people these challenges significantly impacted their daily life.

Respondents who identify as having a disability in addition to their epilepsy (n=487) provided the following insights:

  • Of those surveyed, the majority (91%) stated that epilepsy stops them/the person they support engaging in activities of choice.

  • The majority (89%) of those of working age stated that epilepsy makes it hard for them to get and keep a job.

  • While most (93%) families/people with epilepsy surveyed feel that training for their support worker increases the independence of the person with epilepsy, only a small number (21%) state their support worker has any epilepsy related training.

In seeking the input from Disability Support Workers (n=261) there was agreement that many are supporting people living with epilepsy and are un-trained in the management of seizures and also in the lifestyle factors that could assist with managing epilepsy to promote independence and community access.

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 7 of 15

  • The majority (93%) of support workers surveyed support people with epilepsy through their work.

  • Most (88%) feel they require further training in supporting someone with epilepsy. Despite the considerable data pointing to epilepsy having a ‘disabling’ impact for many people, the condition continues to be considered purely medical without consideration for the effect that epilepsy can have on lifestyle choices including community access and independence, for many who live with the condition.

Respondents who had received an NDIS funding package of services reported overwhelmingly that their functional needs in relation to epilepsy were not taken into consideration in the development of their NDIS plan.

The voices of nearly a thousand (n=969) people affected by epilepsy clearly demonstrate that epilepsy has an impact on life far greater than a medical condition. Epilepsy can have a profound effect on the life choices of many people living with the condition. Where people live with epilepsy in addition to other disabilities it can be impossible to untangle the impacts of epilepsy from those of the disability in relation to the effects on quality of life.

For people living with epilepsy to hear a resounding message that the impacts of their epilepsy will not be considered sufficiently valid under the NDIS has left many Australians unable to access the very support that was designed to ‘assist people living with disability to increase social and economic participation and develop their capacity to actively take part in the community’ (NDIS, Australian Department of Human Services).

The most recent survey conducted in August 2019, Epilepsy NDIS Experience Snapshot 2019 (Snapshot Survey) aimed to provide a brief portrait of recent experiences of the NDIS, echoed earlier findings.

  1. Planner experience, expertise and qualifications Preparing for the planning meeting

Just under a quarter (n=117) of respondents in the Living with Disability and Epilepsy Insights Survey Report 2018 (Insights Survey) had some experience with the NDIS whilst 97% (n=40) of respondents to the Epilepsy NDIS Experience Snapshot 2019 (Snapshot Survey) were currently interacting with the NDIS.

Nearly three quarters (72%) of the Insights Survey respondents received assistance in preparing for their planning meeting while 64% of responders of the Snapshot Survey stated they received assistance in preparing for their planning meeting with 19% utilising NDIS tools and booklets whilst the remainder sought the support of disability organisations.

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 8 of 15

Planning meeting

We repeatedly hear from our consumers that the planners have limited knowledge of epilepsy and it’s impact and disregard the information and reports provided in the planning meeting. With that said 55% of respondents of the Snapshot Survey stated that the NDIS planner did use their prepared material in the planning meeting whilst 53% of respondents were not satisfied with the planning meeting and expressed the following thoughts:

The planner ‘didn’t know about different types of seizures. Or the affects of being on 5 different medications’

‘My sons planner had no idea about my sons epilepsy or seizures. My sons epilepsy is rare and having an untrained and uneducated person making decisions about what was needed or not needed was insulting’

‘ They were not trained in epilepsy’

‘They did not acknowledge the difficulties my child faces having the added issues of epilepsy. They felt my child was old enough to stay home alone for a few hours on her own until I got home from work. That’s not possible with a child having seizures.’

‘They found that epilepsy was not a disability’

‘NDIS have not considered epilepsy a disability and been told ‘danger’ is not a disability.’

‘Not confident they took all my concerns, details etc’

‘They did not read the reports. Their entirety to make their planning decisions’

‘My son’s planner was insulting. He had no understanding of the complexities of epilepsy or seizures or requirements. My son got a good package but money allocated into all the wrong buckets. We can’t purchase the equipment my son needs without going through a lot of hoops. It is too stressful and frustrating.’

This echoes 86 comments from the Insights Survey along the same theme:

‘Have been told Dravet is a medical condition not a disability’

‘They don’t want to recognise epilepsy as a disability’

‘My son was refused anything to do with his epilepsy as it’s a medical condition not a disability’

‘Was told epilepsy isn’t covered with NDIS. The NDIS took no consideration of my son’s epilepsy when writing his plan.’

When asked about the epilepsy specific goals in their plan, 69% stated they did not have them included, 65% stated that there were gaps in the level of their support workers epilepsy knowledge however only 8% had epilepsy training for carers and community support workers approved in their plans.

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 9 of 15

Issue:

  1. Planners have a lack of knowledge and understanding of epilepsy and its impact on the ability of a person living with epilepsy in accessing their community, participate in social, educational and occupational activities and optimise their independence and autonomy.

  2. Planners appear to be unaware of the NDIS Disability Types and Description inclusion of epilepsy with the option for assessment of impairment of function stating outright that it is a medical condition and will not be considered for inclusion in the NDIS plan.

  3. Planners appear to be unaware of the NDIS Quality and Safeguards Commission NDIS

Practice Standards

Recommendation:

  1. Mandatory education of planners and LAC’s about epilepsy and it’s impacts. Epilepsy Action Australia offers an ASQA VET accredited national qualification in Course in Epilepsy Management which has a specific module on Epilepsy and Disability.

  2. Education of planners and LAC’s of the inclusion of epilepsy within the NDIS Disability Types and Description, the option for assessment of impairment of function. Epilepsy is not purely a medical condition it transitions into a disability and planners have an obligation to inform NDIS participants of all the options.

  3. Education of planners and LAC’s of the requirements stated in NDIS Quality and Safeguards Commission NDIS Practice Standards: skill descriptors in supporting people living with epilepsy which requires providers to deploy staff with a minimum level of skills and knowledge – thus requiring epilepsy specific inclusions in their plans.

  1. Participant involvement in the planning process Consumers were specifically asked in the Snapshot Survey if they were satisfied with the amount of input they had in the planning and sign off process, two thirds (n=24) responded NO. Some respondents were satisfied with the planning meeting however others did not see the plan prior to it being signed off and submitted.

‘I requested to see draft before it was sent off but no reply’

‘Was not shown the plan before submitted to NDIS to be able to check for any errors or deletions. Was guided to prioritise only a very limited number of goals’

‘input yes, sign off non-existent’

‘The planning meeting seemed to go very well. The problem came when I realised that the plan didn’t encompass all of my childs needs and he had not been correctly ‘streamed’ as high level care. This is of the because the person who does the planning meeting records

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 10 of 15

everything but the info is handed onto another person who codes and writes out the plan. This person can only go off what is written, not memories and assessments done by being present and part of the process. I had no input in the ‘sign off’ process.’

‘The plan includes things that are not related to me personally but doesn’t cover any of my needs and I get no support at all’

Issue:

  1. Draft plans are not provided to participants for review and agreement before being submitted to NDIS for approval as final plans, leading to an increase in requests for Plan Reviews.

Recommendation:

  1. The NDIA Planning Operation Guideline states that the planning process should be led by the participant (to the extent they wish to engage) working together with the NDIA so they can gain a rich understanding of a participant’s support needs. If this is the case, the draft plan should be reviewed by the participant for agreement prior to submission of the final version to NDIS. This would significantly reduce requests for Plan Reviews.
  1. Plan review and implementation Sixty-one percent of respondents to the Snapshot Survey have requested a Plan Review, a third of those have sought the support of an advocacy agency with a third of those indicating this intervention has improved communications with the NDIS. Thirty-six percent have waited less than three months the same number have waited six months or more with the longest being greater than 18 months.

‘ One of my kids plan was just a copy and paste from the year before. We are now 2+ years on a plan where we can’t do much. Asked for a review and after 6 months still waiting.’

‘I requested a review of the plan because of the issues. Instead of having another meeting to go over all the ways the original plan was inadequate, the plan revision was approved without further input from me. All that changed was a small increase in funding made for the wheelchair, which still did not cover the full price of the chair assessed as the most appropriate for my child’s needs.’

‘Funding was cut severely in our second plan because we did not use all the funds from our plan because our support coordinator was totally useless and did not help link us with services. This was mentioned in our scheduled review meeting but was clearly ignored’

‘ I had to fight 4 years and get a lawyer to go to the AAT and mediate with the NDIS’

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 11 of 15

‘AAT did not help only hindered, local member for Newcastle assisted but the NDIS office audited themselves and agreed with each other that their actions that we complained about was ok.’

When asked if they were satisfied with the plan just over a third (34%) of Snapshot Survey and just under half (48%) of Insights Survey respondents were satisfied with their plan. Almost one third (30%) felt they had not received assistance to know how to get started on their plan and almost a third (31%) had not been able to make contact with their NDIS Local Area Co-ordinator for assistance where as more than half (52%) of the Snapshot Survey respondents experienced no difficulties in implementing their plans.

Where there were difficulties in plan implementation respondents provided a range of reasons:

‘ Gaps in qualifications and professionals in the disability industry’

‘ There are nowhere enough services here’

‘I have had to rely on friends and others to help me. Dealing with a son who has a dx of epilepsy is exhausting and NDIS is not black or white. Its more complicated than reading legislation! It needs to be more simple’

‘It took lots of time implementing every aspect of the plan. Even though we have a support co-ordinator, so much is now pushed onto the carer in the name of choice that my workload has increased hugely. Its up to me to ring around, compare quotes and services, make sure they can comply with the plan constraints yet still achieve the expected outcomes.’

‘ NDIS service provider had client identify and negotiate with service, when this information was passed on to the coordinator she made a brief call to the organisation, the next thing a $300 invoice popped up in the clients inbox for the ground work she had done’

Issues:

  1. Draft plans not reviewed by participants before submission to NDIS increasing requests for plan reviews therefore extending wait time for review.

  2. Some providers transferring responsibility to identify and access supports to participants rather than providing the service they are charging for. Recommendations:

  3. Require the participant reviews, amends and signs off draft plan prior to NDIS submission as a mandatory step in the planning process

  4. Regular surveying of NDIS participants experiences of the service delivery specifically inquiring about processes such as who does the identification and negotiation of services, is the plan self-managed or managed by a NDIS provider to identify if participants are being charged for services they are not receiving.

EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 12 of 15

  1. Summary of Recommendations

  2. Mandatory VET accredited epilepsy education of Planners and Local Area Coordinators covering the impact on community access, participation and independence and the available supports for people living with epilepsy to optimise community access, participation and independence

  3. Education and training of NDIS Local Area Co-ordinators and Planners about NDIS Epilepsy related policy content and available documentation and their obligation to inform participants of: options for assessment of impairment of function; epilepsy specific supports; and inclusion of epilepsy training for support workers and Carers in their plans

  4. Adjust the planning process to include a mandatory step requiring the participants review, amend and signs-off draft plans prior to NDIS submission

  5. Regular surveying of NDIS participants experiences of the service delivery specifically inquiring about processes such as who does the identification and negotiation of services, is the plan self-managed or managed by a NDIS provider to identify if participants are being charged for services they are not receiving.

  6. List of Epilepsy related supports for inclusion in NDIS Plans Area Epilepsy related support

Capacity Building Epilepsy Action Australia offers:

Improved Daily Living Development of an Epilepsy Management Plan

Including Registered Epilepsy Nurse Consultation

Capacity Building Epilepsy Action Australia offers:

Improved Daily Living Development of an Epilepsy Emergency Management Plan

Including Registered Epilepsy Nurse Consultation

Capacity Building Training for Carers and Support Workers

Improved Daily Living Epilepsy Action Australia offers:

  • Epilepsy Essentials Course
  • Emergency Medications for Seizures
  • Living with Epilepsy and Disability
  • Epilepsy: Minimising the Risk
  • Observing and Recording Seizures and Other Events
  • Epilepsy Knowledge Program
  • Yarning Epilepsy EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 13 of 15

Capacity Building Epilepsy Action Australia offers advice and guidance on: Improved Daily Living Aides and equipment to enhance independence and safety

  • Seizure monitoring equipment
  • Seizure monitoring and fall detection technology
  • Medication dispensing aides
  • Protective headgear
  • Cooling clothing and devices
  • Assistance Seizure Support Dogs Capacity Building Supports to access social groups and activities

Skill Development

  • Residential and Day Peer Support Programs Core Supports • Epilepsy specific conferences and seminars for people living

Assistance with Social and with epilepsy Community participation Capacity Building Access to broad range of therapies to facilitate functional

Improved Daily Living improvements

Improved Relationships

  • Speech Therapists

  • Occupational Therapists

  • Physiotherapists

  • Neuropsychologists

  • Psychologists

  • Behavioural Support Teams Core Supports Supports to increase social flexibility and independence of parental (informal) support structure and ensure continuity of long-term Assistance with Daily Life informal supports (previously known as respite services)

  • Short term accommodation and assistance

  • Assistance in living arrangements solution

  • Assistance with self-care overnight Specify level Level 1 – 7-14 days/year allow carer to attend key activities Level 2 – 14-28 days/year strategy to build capabilities for . future independence Level 3 – 28 days/year informal support most days and is at risk . of not continuing due to intensity of support required

Capital Supports Refer to specific guideline on home modifications

Home Modification               •   Shatter proof shower screens

  • Air conditioner heat triggered seizures Assistive technologies

  • Outward opening doors

  • Assistive technology memory aide EAA – Joint Standing Committee NDIS Inquiry Submission September 2019 Page 14 of 15

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