Assistive Technology and Home Modifications for people with

Motor Neurone Disease Response from MND Australia to the Senate standing committee on the NDIS Due to the rapidly progressive nature of MND, people with MND’s needs change quickly – for example within a 3 to 6 month window of time it is very possible that a person with MND may progress from being able to walk independently, to needing a walking frame at the 3 month mark, to needing a powered electric wheelchair at the 5 or 6 month mark. Similarly, in a short space of them, they may change from needing a standing hoist to a full body lift hoist. If someone lives in Victoria or NSW, they may be able to benefit from the bundle of equipment available from the MND association equipment libraries, however the equipment library only contains assistive technology that meets the general needs of people with MND, eg. electric bed, hoist, manual wheelchair, electric recliner chair, shower commode, standard power wheelchair. Some people will require specialised and individualised communication and mobility AT not available through the MND Association equipment bundle as well as home modifications. Assistive Technology and Home modification issues It is our experience that:

Typically, approval for a piece of equipment, outside of the MND “equipment bundle” takes between 6 to 12 months. People, and their family carer, may be placed at risk without the equipment for such periods long of time and their quality of life compromised – critical if they only have a short time to live.
Equipment requirements identified at the planning meeting are put into the participant’s plan as “quote required”, even if the therapist has already identified and can detail the requirements at the planning meeting. On submission of the clinical justification and quote, there is no acknowledgment of receipt of the request, or transparency of where the request is at.
The planners often challenge the clinical reasoning and justifications that an allied health professional submits when they have no training in this area – there is a lack of trust or acceptance of a health professional’s opinion, despite the NDIA paying for the assessment and advice.
Therapists are familiar with the assessment process required by the scheme, hhowever on submission of an assessment and prescription and quote for a piece of equipment, a review is required to assess if the equipment meets the reasonable and necessary test.
The NDIA will generally not respond to enquiries by the therapist who submitted the equipment request (despite the participant signing a service agreement with the therapist), meaning that the follow up is pushed onto either the participant or the support coordinator who are not always aware of the specific equipment details.
Quotes for equipment expire after 4 weeks, requiring new quotes to be requested, further delaying the review process.

Response from MND Victoria

AT Case example: Margaret Margaret is 63 and was diagnosed in 2012 with limb onset MND with bulbar symptoms affecting her speech, eating, swallowing. She moved into a residential care facility in 2016 at the age of 61.

Margaret’s hands and arms are weakened by MND and her trunk strength is declining. Her legs are weak and stiff & she walks slowly using a frame and walks indoors for short distances. She has been having frequent falls over the last 12 months and fractured her spine in one of these falls.

A power wheelchair prescription was completed by her Occupational therapist in Oct 2017 and submitted via the required process. She is still waiting for this piece of equipment 12 months later. Her fall where she fractured her spine may have been avoided if she had received the wheelchair.

Home modifications

Modifications can be a necessity to enable a person to remain living at home; without them it can lead to people including young people being placed in aged care facilities.

Issues that our MND Advisors have experienced when supporting people with MND relating to home modifications include:

The process for “complex” home modifications (as defined by the NDIA) are extremely bureaucratic and complicated.
Training from the NDIA for allied health professionals about the complex home modification process has been limited. Therapists often submit assessments which are deemed incomplete by the NDIA however the NDIA staff do not advise the therapist that the paperwork is incomplete, waiting for contact from the therapist or participant; often the therapist may think the process is in progress, only to find out after several months that they need to re-do parts of the application and that the process has been stalled. As with the AT process, NDIA staff will often not engage with the therapist when they make contact to establish how the application is progressing despite a service booking listing the therapist as the engaged health professional available for the NDIA to see on the system.
The technical advisory team (TAT) where all “complex” modification cases are referred to, is like a black hole – when a case is referred to the TAT, months can go by without any information about why there is a delay in a decision being made.
Unilateral decisions are made by the NDIA about complex modifications without consultation with the clinicians that the agency has funded to undertake the assessment/recommendation. It appears that the NDIA has limited trust of the trained clinicians.
Time frames for modifications to be approved can be over 12 months.
If any structural works are required, a specific line item needs to be put into the plan to engage an architect or surveyor – this is often omitted from plans, requiring a review to be undertaken to have this added. Planners often state they do not know much about the modification process.
For complex modifications, quotes need to be sourced from NDIA registered builders – there are limited NDIA registered builders and those that are registered are often not interested in quoting as the process is too complicated and onerous.

Case Example: Dan

Dan is a 51 year old who was diagnosed with MND in 2012. His MND has progressed over the 6 years since diagnosis. He now has no movement in his arms or legs, cannot speak or swallow food. He communicates though use of an eye gaze technology and mobilises in his electric wheelchair using similar technology.

In 2016, his relationship with his wife broke down, partly because of the care burden placed on his wife as his care needs increased. He moved to a residential aged care facility in 2016 as there was nowhere else suitable for him to live.

In June 2017, he was asked to leave the RAC facility as his needs were too great for them to be able to care for him. He was admitted to an acute hospital, where he still is living in September 2018, 15 months later.

Dan decided he did not want to return to aged care; had investigated other supported housing options and as he was unable to find any suitable accessible accommodation, his sister agreed that he could move in with her family. This required some modifications costing approximately $30,000 - an insignificant sum compared to him living in an acute hospital.

The home was assessed as being suitable for modification by a qualified Occupational therapist in July 2017 and this was included in his first NDIA plan. Modifications are required to create an accessible bathroom on the ground floor and to fit a ceiling track hoist.

Dan has enough funding in his plan to pay for care 24 hours a day but is still waiting for the modifications to be approved and undertaken. He would love to be able to move home before Christmas, but fears this is unlikely to happen.

Response from MND NSW

Overview:

AT: Generally most NDIA offices respond in 12 weeks, some can take 4-12 months with varying levels of clarification and information requested from NDIA over that period.
Home modifications: Mostly very long delays then declines.

A number of people with MND in NSW have been told that car, home modifications and specialised communication technology for people with MND do not represent ‘value for money’ as MND is a terminal condition. This has led to a number of people contacting their local MPs and media and with some cases being referred to AAT tribunal.

See Dr Justin Yerbury’s story here and Sally Wade’s story here

Sydney, Inner West:

Case example 1

X – At plan review meeting in Feb 2018, X advised that his bed required replacing as it was quite old, on a slant and broken. X had developed significant pressure sores due to being in bed for most of the time as his chair was also in need of hand control repair. The Planner advised she would only approve repair not replacement of bed. OT arranged for technician to assess bed repair. Bed assessed as not being repairable by technician and needing new bed. Review request for bed replacement submitted in June 2018 and new bed approved in July 2018. This was finally approved, however due to ordering and needing to wait for

Case Examples

South West Sydney:

Home Modifications Required

Bathroom Mods quoted as approx. $18,000 and community access approx. $11,000.

Bathroom was the priority and focus
Request sent to NDIS November 2017 by May 2017 had been declined twice
Many inappropriate suggestions made by NDIA rather than real consideration for her current needs, including formal request for prognosis
Application made to AAT in May 2018
X had been bed bathed since November as family and X didn’t want to go to res care
Carer had raised issue with local MP and made application to AAT tribunal in May 2018.
X died in August 2018, during AAT process.

Slow progressive person

Request for necessary power chair purchase made to NDIS in October 2017 ($56k), no standard options were suitable.

NDIA approved the seating for the chair but not the chair.
NDIA finally approved chair 26 Sept 2018.

Illawarra:

X Requested home mods to provide her with a bathroom (convert laundry to bathroom as no longer able to get upstairs to bathroom for showering) to be included in first plan in January, as well as mods to allow access for X to her home – steps into the home as soon as you enter the front door, so requires access at the rear of the home. Plan review in March and reports, plans and quotes were provided for both modifications.

Planner verbally advised there would be no issue with approving bathroom mods, however rear access may be an issue due to cost of work required.
New plan was issued without any mods included, still asking for quotes and reports even though provided.
Were advised review would occur to rectify this.
Director of service contacted after months of chasing up to no avail, was advised requests escalated to specialist senior planner to review.
Numerous attempts to chase these requests by Coordinator of Supports and participant.
9 months later participant still has no shower and no access to/from her home.
Minister has been involved x 2.

Case Studies

Case Study 1:

In 2017 X’s AT funding was approved but was funded in several different and consecutive plans due to NDIA mistakes that they didn’t correct. This made it difficult for suppliers to claim for payment of goods and delayed acquisition of the items. It also meant confusion for service providers and the family having to set up agreements for each new plan. When it came time to review his plan we asked for the items that hadn’t been claimed for to be carried into the new plan to simplify the process but this was declined.

Case Study 2:

X, had two items pending with the NDIS and Administrative Affairs Tribunal (AAT):

Sherpa Stair Climber (Assistive Technology) - $7,000K – wheelchair bound participant that cannot move or speak independently with two autistic children. AT item allows wheelchair to attach to stair climber to assist him to go downstairs in house (as trapped upstairs in bedroom and bathroom only for 12 months) and to leave house to access community – declined twice in 2017 and now in the Administrative Appeals Tribunal
Scripted TIS manual wheelchair (Assistive Technology) - X required the scripted TIS wheelchair for his positioning and seating requirements $11k, power chair couldn’t fit in house and no hire option available in his small size – requested in November 2017, declined twice in 2018.

In regards to the Sherpa Stair Climber (Assistive Technology) - $7,000K – wheelchair attaches to stair climber and stair climber attaches to stairs to assists X to go downstairs in wheelchair and leave house to access community. X lives in small split level townhouse and X only able to access upstairs part of house (bedroom and bathroom for over 12 months until death). Participant could not move downstairs permanently as it would require extensive major renovation to install a bathroom, the stair climber was the most affordable option. First requested NDIS funding for item in April 2017. NDIA declined twice after assessment and submission by two different OT’s. Decline based on NDIA insisting on hire option for X, however their was no hire option available and later for lack of value for money and so referred to Administrative Appeals Tribunal in November 2017. NDIA were also convinced that a platform lift would be best option despite evidence by OT to the contrary and was incidentally double the cost of stair climber. Through tribunal process, NDIA requested updated prognosis and life expectancy information from X, although Tribunal declined their request as being irrelevant. In July 2018, the day before the tribunal hearing, the NDIA made a last minute settlement and agreed to purchase of stair climber as NDIA appointed OT had offered no other alternatives to stair climber except relocation which the family and X refused for many valid reasons. NDIS delayed providing funding until 4 weeks after AAT settlement, unfortunately X died on that day.

In regards to the Scripted TIS manual wheelchair (Assistive Technology) -$11k - X required the scripted TIS wheelchair for his changed positioning and seating requirements, his using a FlexEquip hire chair that was no longer supportive or suitable, power chair couldn’t fit in house and no other hire option available in his small size. Requested of NDIA urgently in November 2017, declined twice in March and July 2018. Two decline letters issued based on, TIS wheelchair not being cost effective and/or useful in long term for X. Also NDIA convinced that FlexEquip had appropriate alternative option (it did not). Advised NDIA that application would be submitted to AAT to join current stair climber request for X and they settled and agreed to stair climber and TIS wheelchair purchases simultaneously the day before the scheduled AAT Tribunal Hearing. NDIA delayed providing funding until 4 weeks after AAT settlement. Unfortunately X died on that day.

Key Suggestions/Solutions

NDIA investment in the MND Association equipment library service to support people with MND nationally and to expand the items available via the existing NSW and Vic libraries.
NDIA processes and systems reviewed, simplified and streamlined to enable equipment for purchase and hire to be approved in a timely manner.
Transparency of progress of an equipment or home modification request to the participant, support coordinator and the allied health prescriber.
For the NDIA to have trust in the allied health professionals that the NDIA is commissioning (via a participants own choice and control) when recommending equipment and modifications.
Allowing non registered NDIA builders to quote and undertake home modifications.
NDIA to utilise community based organisations like MND state associations to assist them in testing reasonable and necessary decisions.