Recommendations for NDIS Planning: Young Adult Complex Disability Service

St Vincent’s Hospital

(Melbourne) LimitedST VINCENT’S

HOSPITAL ABN 22 052 110 755

MELBOURNE 41 Victoria Parade Fitzroy VIC 3065

PO Box 2900 Fitzroy VIC 3065

A FACILITY OF ST VINCENT’S HEALTH AUSTRALIA

Telephone 03 9288 221 1 Facsimile 03 9288 3399 www.svhm.org.au

6 September 2019

Committee Secretariat

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

Dear Committee Secretariat

St. Vincent’s Hospital Melbourne submission to the Planning Inquiry by the NDIS

Joint Standing Committee

Thank you for accepting the following submission made by the Young Adult Complex Disability Service (YACDS) at St. Vincent’s Hospital Melbourne in response to the current inquiry into the National Disability Insurance Scheme (NDIS) Planning. Our YACDS healthcare professionals have developed this submission with due reference

to  the  information  available  on  the  NDIS  Joint  Standing  Committee  website

(https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability

_lnsurance_Scheme/NDISPlanning).    This  submission  makes  a   total  of  22

recommendations supported by six case examples.

Young Adult Complex Disability Service, St. Vincent’s Hospital Melbourne

Background

The Young  Adult Complex  Disability Service (YACDS)  at  St.  Vincent's  Hospital

Melbourne  (SVHM)   is  a  specialised  state-wide  ambulatory  healthcare  service,

supporting young people who are 18 to 40 years of age with a developmental disability resulting in ongoing complex multifaceted health needs. The service was established in 2006 and is funded by the Victorian State Government as a Health Independence Program.

YACDS assists young adults, their families and carers, to transition from paediatric health services into the adult healthcare system. The service delivery model is based on patient-centred care, provided by an experienced multidisciplinary team including:

Medical  Specialists,  Physiotherapists,  Occupational  Therapists,  Social  Worker,

Orthotist, Speech Pathologist and Dietitian. Approximately 200 clients with a disability

Facilities

St Vincent’s Hospital Melbourne

Caritas Christi Hospice

St George’s Health Service

UNDER THE STEWARDSHIP OF MARY AIKENHEAD MINISTRIES Prague House

are actively receiving healthcare interventions and care coordination from YACDS in any 12 month period.

All YACDS clients meet the eligibility criteria for NDIS participation. Over 95% of the YACDS clients are current NDIS participants.

YACDS is not a registered NDIS provider; however, clinicians provide intervention and support for highly complex clients in the following NDIS areas:

clinical expertise regarding complex disability, NDIS eligibility and care needs;
prescription of Assistive Technology (AT), including vehicle modifications;
prescription of home modifications (including complex);
access to support services, respite and day programs;
advocacy; and
support for plan development and review.

Submission Summary

As healthcare professionals working with people who have complex disabilities, the YACDS team have substantial experience in supporting participants to access and navigate the NDIS. This submission references a complex cohort of people with a

disability.  The following  is a  list of identified issues with NDIS operations,  in  this

context.

Some planners lack an understanding of the needs of those people with complex disabilities.

• Some planners lack consistency, transparency and equity in their decision

making.

Some planners have at times been found to be operating out of their scope of knowledge or experience, including instances of applying personal judgement.
A minimum standard of knowledge and training in a variety of skill domains is necessary for planners to operate effectively.
Planners will ideally be required to meet the participant and supporters at least once to gain a clear understanding of the participant needs.
Participants and their supporters need to be engaged throughout the planning process, including there being some opportunity to modify a draft plan.
Better initial plan development is anticipated to reduce the instances of plan reviews and plan gaps. Where plan reviews are necessary, a simple and timely pathway for responding to changing needs is essential.

• There is an opportunity to improve and simplify pathways for planned and

unplanned AT needs.

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YACDS response to key criteria of NDIS Planning

The experience, expertise and qualifications of planners

Planners vary significantly in the level of experience and expertise they bring to the role.

• Clients frequently report planners’ lack appropriate level of knowledge and

understanding of their disability and the subsequent impact of their disability on function.

Planners with no clinical or disability training are making clinical decisions without the knowledge and capacity to make judgements on type, amount and allocation of required resources, while therapist expertise is not understood and/or valued.
Some planners are unable to comprehend what therapy/services/AT clients need to achieve their goals.

Case Example 1: A planner informed the YACDS Senior Physiotherapist that a power wheelchair (AT) was unnecessary, as he (the planner) is also a person with a disability who does not use power mobility. The planner felt his lived experience and disability was equivalent to the participant. The Physiotherapist questioned this reasoning, as there was no clinical similarity between the disabilities of the client and the planner.

Recommendation  1: Planners should not make judgements based on  their

personal  experience.   Planning  decisions  should  be based  on  the NDIS

guidelines, participant goals and clinical recommendations.

Recommendation 2: Establish and maintain a minimum standard of NDIS planner qualification, experience and expertise.

The ability of planners to understand and address complex needs

•   Funding allocation by some planners  is incongruent between therapy and AT, for

example:

o  Plans may have  significant therapy  hours  to  prescribe AT,  but have

inadequate funds to purchase the recommended AT, including where the provision of AT would be most beneficial to achieving client goals.

o  Plans with  nil therapy hours allocated but with AT funds, resulting in there

being no mechanism to prescribe or access the AT required.

Some planners are unable to identify care needs of clients with complex disabilities; this may be evident when a planner doesn’t understand or consider all the

specialist details provided to them, resulting in inaccurate or inadequate plans

established.

YACDS clinicians are frequently asked for further justification of recommendations due to some planner’s lack of understanding or ability to interpret a therapist’s

clinical assessment. Examples of questions planners have asked of YACDS

clinicians: o What does the head rest attach to? o Do they really need a ROHO (pressure relieving) cushion?

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o Why do they need a tray? o Can you take the power function off the wheelchair quote? o We will pay for the “tilt” but not “in space” component of a power wheelchair.

Case Example 2: A non-verbal YACDS client with an intellectual disability, requiring assistance for all daily care and wheelchair mobility, commenced their first NDIS plan

in February 2019.  The planner originally classified the  client as low care, despite

significant health issues due  to her disability including:  reliance on percutaneous

endoscopic gastrostomy (PEG)  feeding,  the use of a colostomy bag and urinary

incontinence.  The  initial plan included six nights of respite, did not adequately fund

attendance at her Day Centre or costs associated with essential AT and carers. All of

these  disability needs were  covered under the previous  funding  system.   This

participant has experienced five plan reviews in the first seven months of their plan. The participant has now been classified as high care, after enlisting the assistance of the Minister.

Recommendation 3: Creation of a specialised team of planners with improved understanding of complex needs. Resource this team with access to a group of therapists/services which have demonstrated capacity and clinical expertise to advise on the planning needs of complex patients.

The ongoing training and professional development of planners

•  Some  planners  require  greater understanding  of  health and  disability  terms,

inclusive of diagnosis and assistive technology. Consistently improving planner understanding would decrease the need for therapists to repeatedly justify the reason for equipment prescription, request for replacement and technical upgrades.

•  Some  planners would  benefit from consumer engagement  training.   Not  all

participants have the capacity to understand the NDIS process or terminology.

•   Planners should be prepared and  upskilled  to  assist with  capacity  building  of

participants. Participants from non-English speaking backgrounds, with poor health literacy, lower socio-economic community members and people who have suffered from trauma will require additional support to navigate the NDIS.

Planners would benefit from visiting the types of services participants use to gain a better understanding of the participant needs and the impact planning decisions have on participant engagement.

Recommendation 4: Establish minimum required learning expectations for NDIS planners, recognising the constant evolution of new clinical evidence, advances in AT, and innovation of services and products. Include experiential learning through service/site visits, and the importance of consumer engagement.

Recommendation  5:  Planners  require  training  to support  participants from

vulnerable populations (non-English speaking backgrounds, poor health literacy, lower socioeconomic situations and trauma survivors).

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Recommendation 6: Planners should always use an interpreter, if indicated,

particularly during Planning Meetings.

Recommendation  7:  Establish a formal supervision model  to enable more

experienced/qualified  internal  delegates  to have a framework and  time  to

train/upskill staff.

Participant involvement in planning processes and the efficacy of introducing draft plans

•   Planners  are encouraged  to  complete   initial  planning and  reviews  over the

telephone for efficiency.  However,  it is difficult for a planner to fully comprehend a

participant’s life long and complex disability needs without meeting them and the people who are their main supports in person.

Case Example 3: A detailed AT application with clinical justification for a sit to stand power wheelchair for a participant was submitted by the YA CDS team and declined. At the meeting to appeal this decision, none of the four NDIS plannersldelegates//oca/

area support coordinators present had previously met the  participant.   During the

meeting it was evident the planners did not understand the fundamental information in the application regarding the participant’s capabilities and needs or impact the on the

participant's  family/informal supports.   These  issues were  resolved by the NDIS

decision makers meeting the participant. This process was resource intensive for both YACDS and NDIS, and the client was disadvantaged by the delays.

Recommendation 8: Planners are required to have at least a minimum of initial face to face contact when preparing a plan or considering a decision for a participant with a complex disability.

Recommendation  9:  Planners be given adequate time  to conduct thorough

preparation of plans. This will likely reduce the plan gaps, the need for plan reviews and escalation of issues.

•  Some  participants may experience  the  planning process as  confusing.  The

process relies on the participant’s: o ability to understand what they need; o capacity to advocate for themselves; o cognitive ability to process and respond quickly to information; and o ability to access/transact through a portal on a computer.

Some people with physical and mental disabilities and their supports are not able to advocate for themselves, understand what they need or recognise this in real time (for example during a verbal planning meeting).

• Some planners do not use ‘easy English’ or a ‘check in’ process to assess

consumers’ level of understanding.

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Recommendation 10: Planners should use ‘easy English’ in verbal and written communication. Planners should have a mechanism to confirm regularly that the participant has understood the content.

•  Some  participants have  reported planners have appeared unsympathetic and

lacking understanding of the impact of the disability on the individual.

Some participants are expected to repeatedly discuss traumatic information during review meetings.

Recommendation 11: Planners should document critical information regarding the participant history and be familiar with the participant details prior to future meetings.

Recommendation  12: Planners  will  ideally recognise and acknowledge  that

engaging in the planning process may be reliving past traumas for participants or supporters/carers. Planners should be required to read the reports available to them, to minimise the impact of repeating traumatic information.

Some families have commented that not allowing them to see a draft of the plan causes them significant frustration and distress.

Recommendation 13: Participants are entitled to have the right to check their draft plan before it is activated.

•   Participant choice needs to be supported by clinical assessment.  For example, a

client requested a standing power wheelchair. The client was assessed as not having the required physical and musculoskeletal requirements to make this a safe option.

Recommendation 14: Planners consider participant requests, subject to clinical recommendations for safety and suitability.

The incidence, severity and impact of plan gaps

75 % of YACDS clients require a plan review due to plan gaps.
Plan gaps place significant and unsustainable pressure on the participants, their informal supports and the health system.
Plan gaps also impact providers. Services cannot be sustained without funding. Case Example 4: The case of an indigenous family living in a regional area, with grandparents as primary carers for twin YACDS clients, with family also comprising another disabled sibling and two other dependent relatives. Due to their disability, the

twins have extreme behaviours of concern, including physically harming · family

members and are incapable of decision-making. Prior to NDIS, both twins were

receiving Individual Support Packages through the Department of Health and Human Services (DHHS), which included regular respite, day centre, in home support and support co-ordination to maintain the family in the community.

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The YACDS Social Worker identified that the twins had been placed into an NDIS

planning stream without any support coordination funding.   Additionally,  the twin's

NDIS plans included major gaps including reducing core supports and respite funding. Local NDIS providers and services declined to provide a service to the twins due to the funding gap. Home supports were therefore cancelled. A significant proportion of their

short-term accommodation  funding  has been  used,  as  the  primary  carer was

unavailable while undergoing prolonged essential medical treatment in a capital city.

The a/location of support coordination funding is identified by several NDIS principles. In this case, the twin’s met the following NDIS criteria including:

o they are Indigenous Australians; o multiple children in the family have a disability; o there is a history of child protection involvement within the family; and o vulnerable and elderly guardians/carers.

Significant advocacy by the YACDS Social Worker was required to the local non

government  organisation  providing  NDIS  planning  to  have  intensive  support

coordination funding included in the twin’s NDIS plans. The YACDS Social Worker also intervened to ensure that due to the complexity of their disabilities, the planning and delegation of the NDIS funding should be conducted by the NDIS themselves, not a subsidiary. This extensive process has had a significant impact on the primary

carer's health, YACDS resources,  continuity of services and quality of life  for this

family.

Recommendation 15: Greater consultation and review is required at the time of plan establishment for complex cases and may reduce the volume of plan gaps and reviews required.

Recommendation 16: Identify participants with complex care needs and allocate to experienced, skilled planners.

The review process and means to streamline it

•  Unscheduled plan reviews sometimes do not occur in a timely way.  Unscheduled

reviews may at times take months to occur and causes stress to the participant and their informal supports/carers.

Whilst waiting for a plan review, the allocated funds may expire, posing a further risk and burden to the participant and their informal supports/carers.
It is noted that the review process is often triggered by equipment needs. Recommendation 17: Remove AT from the plan review process and establish a documented pathway with clinical expertise to address changing AT needs and availability within a plan. Classification of urgency (e.g. failure of existing AT) and complexity could determine the pathway for AT consideration.

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The incidence of appeals to the Administrative Appeals Tribunal and possible measures to reduce the number

•  The  incidence  of appeals  could be  reduced by  ensuring  plans address the

complexity of individuals’ disabilities (refer to recommendations above).

•   At times, inconsistencies and lack of transparency of what  is or is not included  in

plans contributes to the volume of appeals. Participants, families and service providers compare plans (between participants and from year to year) and obvious, substantial inequities are identified.

Recommendation 18: Increased transparency between NDIS planners and the disability community to decrease the amount of complaints, appeals and review requests.

The circumstances in which plans could be automatically rolled-over or longer plans could be introduced

Core supports and long-term goals could be automatically rolled-over or longer plans created, with specific items or categories reviewed more frequently or as needed.

Case Example 5: A YACDS client who is a wheelchair user required unforeseen

essential surgery which changed the positioning needs of the client. The client

required timely expert advice and changes to their previous wheelchair to ensure

adequate positioning and safe mobility. The NOIS Plan does not include funding for clinical assessment or assistive technology modifications. While waiting for funding to be considered and approved, the client developed new preventable health conditions including contractures.

Recommendation 19: Plans could be ongoing or of longer duration with capacity

to review and change as needs change,  particularly  for those with  lifelong

disabilities.

Recommendation 20: A process for participants to easily communicate a change in circumstances to the NDIS and request a timely review is required.

The adequacy of the planning process for rural and regional participants

The planning process is at times inadequate for participants who have a complex disability when they do not have the opportunity to meet face to face with a planner.

Rural clients may have more limited opportunity to complete this face to face

meeting.

Recommendation 21: Increase equity of access to face to face meetings for rural and regional participants.

Other related matter: Transparency and consistency of the planning process

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• There may be inconsistency between planners regarding what is approved or

communicated  to  participants  and/or  providers.   At times what one  planner

approves, another does not; at times there is a lack of transparency as to why decisions differ.

Case Example 6: A participant was requested by the NOIS planner to obtain a copy of

the  therapist's  clinical assessment as evidence  to support a quote  for AT.   The

participant is self-managed. The item was low cost and low risk and would ideally be able to be purchased through consumables, as less than $1,000 without the provision of a clinical assessment. The therapist’s clinical assessment uses therapy funds and resources unnecessarily.

Recommendation  22:  There  should  be  transparent  guidelines  available  to

participants, planners and providers to clarify approval pathways for AT and services, including low cost items.

Thank you for the opportunity to contribute to this important NDIS Planning Inquiry. We would be happy to contribute further to assist the NDIS Joint Standing Committee

address these system issues.   Please  feel free  to  contact Stephen Vale, SVHM