NDIA Accountability Project

Daughter's need for assistive technology and NDIS transition challenges

‹ PrevPage 1 of 4 · Source p. 1Next ›

Parliamentary Submission into the NDS Provision of Assistive Technology

Background

I am a mother to a 15-year-old daughter with mixed dyskinetic spastic quadriplegic cerebral palsy GMFCS V MACS V CFCS V. What does this mean? She cannot walk, stand, sit or rollover without assistance. She needs full assistance for everything - to eat, drink, toilet, take medication, get dressed and change position. At times she even requires assistance to maintain her airway with regular suctioning.

She communicates using yes/no responses. These can be difficult to interpret even for familiar people. It is a very tedious way to communicate more than basic responses. She is very opinionated and has a wicked sense of humour. Her yes/no responses disappear altogether when she is distressed or sick. Consequently, she requires a wide range of assistive technology to maintain her health and well-being. This includes a wheelchair with pressure care seating, standing frame, hospital style bed with pressure care mattress, modified vehicle, home modifications, shower chair, shower trolley, hoist and sling, afos, continence aids, feeding device with associated tubes, lines, feed pump and specialised formula, and a PODD communication book.

Because of her high support needs, much of her equipment needs to be custom made.

We live in Queensland in an area which began transitioning to NDIS on 1 July 2018 but have so far had no contact regarding our planning meeting date.

Continence Aids

In June 2018 I placed my usual order for continence products with MASS. They are not available for purchase at supermarkets, department stores or even community pharmacies. I made two follow up calls in July and early August to find out when my order would be delivered. On 14 August I called again and was told that there were huge delays. Really? I thought with many clients transitioning to NDIS there would be fewer clients.

On further questioning I was told that my order was approved in July, but they could not tell me when delivery would occur. I was in a queue and it would be dealt with in time. They could not even give me an indication of time frames when asked whether it would be days, weeks or months. They could not tell me how many people were ahead of me on the waiting list. A call to the supplier confirmed that they could deliver within 24 hours once the order was placed. A further call to MASS then informed me that the order couldn’t be placed as all funding for my area had ceased on 1 July 2018 and I should chase NDIS as it was now their responsibility. This had not been stated on any of the earlier calls.

What happened to the continuity of support that was stated in the bilateral agreement? Our continence aids have since arrived after much pestering but without strong advocacy we could have been waiting months until NDIS presumably took over our funding. Not everyone in my region rolled over on 1 July so funding should not have been stopped on this date. How do people with a disability and no strong advocate navigate such obstacles without compromise to their health?

Wheelchair repairs

In June 2018 I requested from MASS several repairs for my daughter’s wheelchair. Despite follow up calls no repairs have been made and no date has been set for them to occur. It appears that we are in limbo, not really now being serviced by MASS but also awaiting our transition to NDS. No one wants to take any responsibility.

Communication device

We began trialling switches for use with a communication device back in 2008. We have trialled numerous physical type switches using various body parts. The most successful have been a jelly bean switch placed at her knee and one used with a wrist movement when her arm was anchored to her wheelchair tray. Although a level of success was achieved, our daughter’s involuntary movements result in many miss hits which makes switch use extremely frustrating, and very fatiguing. After several years we began eye gaze device trials, of which we have done several. I’ve lost count. Once again, some success was achieved but calibrations were poor, set up times lengthy (20-30 minutes) and fatigue significant after only 10-15 minutes. Eye gaze was also an odd choice given our daughter has cerebral vision impairment.

In July 2018 we were lucky to attend the ISAAC (International Society for Augmentative and Alternative Communication) conference on the Gold Coast. At the conference we trialled several new devices that may finally give our daughter better access to communication. NeuroNode by Control Bionics looked really promising. So promising that we participated in a paid 7-day trial in August. It was life changing! She managed to play a soccer tournament against her brother using a basic soccer game app on the iPad. She had people directing questions at her about the device ather than just ignoring her and asking me. She participated in real peer to peer interaction in the classroom without the assistance of an adult for the very first time in 15 years! Her class mates fought over who got to play NeuroNode with her at the end of each day. She has always been pretty happy and easy going, but she had become a different person. Since returning the NeuroNode she has become withdrawn and listless. She refuses to smile or communicate other than to confirm she wants a NeuroNode.

I asked the school-based speech language pathologist to complete the NDIS forms in preparation for our planning meeting. She said she could not complete the forms as Education Queensland therapists are not viewed as providers under NDS. This SLP has worked with our daughter over several years including several trials of various equipment. No other SLP has had contact with our daughter in more than 5 years. She also goes on maternity leave in one week at which time her input and expertise will be lost. I questioned another therapist who had more experience with NDIS and she indicated that it is likely that NDIS will ask us to re-assess and re report because of the cost of the device. I was also told I would need more than 1 quote. There are no other devices that perform in the same way as NeuroNode. This was not just a 7-day trial but the culmination of 10 years of research, trials and working with a variety therapists and teachers and consultants. I cannot even get the forms completed. I should not have to pay a total stranger, with no history working with my daughter, to complete these forms for NDIS. Her current Education

Time delays and a safe environment for NDS participants and workers

We cannot apply for funding for a NeuroNode or any other AT through any organisation other than NDIS as our area is rolling out now. However, our planning meeting could still be months away. It then is potentially many more months, even years, before a NeuroNode would be approved (which isn’t a given) based on others’ experiences. In this time the quote will expire. If it takes too long to be approved, I’m sure more up to date assessments will be required. This would require finding and paying for a new SLP and OT to do new assessments and reporting at a cost that will run into the thousands. Duplication of resources in this way is such a waste.

During this transition phase, if our daughter outgrows her equipment or her needs change significantly, which is possible, there doesn’t appear to be any way to speed up the process. For example, if she out grows her afos and they aren’t replaced in a timely manner, she loses access to her standing frame. This has flow on effects for her health and well-being in terms of posture, respiratory health, pain and pressure areas. This then impacts her ability to attend school and be involved in other community activities.

Just as important is the risk to carers and support workers when equipment becomes faulty or is outgrown. We have had two support workers injured using an old manual style hospital bed that required the worker to physically pull up the end of the bed in order to raise our daughter’s head. This affects the workers’ ability to earn an income both in our home and in other employment. It is the responsibility of the employer to provide a safe working environment. If the family can’t afford to repair or upgrade expensive equipment without funding, this then falls at the feet of the NDIS. And if it isn’t a safe work environment for a support worker, it is also very unlikely to be a safe work environment for the informal supports like friends and family.

Timely approval of AT is critical! Especially when it impacts the physical and mental health of the participant and/or support workers (formal and informal). When someone has complex needs, the trial phase is often extensive and time consuming. The delivery of suggested items is also quite slow as many have to be custom made to meet specific needs. When the middle step, approval and funding, is also delayed time frames extend into years. This is unacceptable in a wealthy first world country like ours.

  • In summary

  • There are some glaring gaps during the transition phase to NDIS when assistive technology cannot be applied for, funded, or even repaired under the old system but are still not the responsibility of NDIS. Where does someone turn, especially if it is urgent?

  • The time frames for approval are appalling, especially given the people making the decisions in most cases don’t even meet the participant. The slow bit of the process, and most critical in my opinion, is the trial phase, consisting research, consultation and trialling of selected equipment. This should be in person with a qualified therapist to make sure the AT is fit for purpose, the best solution and cost effective for the client. Sometimes this isn’t the cheapest option, as more expensive items often allow for more adjustment and growth and so last longer over the long term. Funding approval for AT should be much more straight-forward, and hence relatively quick after the trial phase has occurred.

  • Time delays have flow on effects that impact the physical and mental well-being of participants. They also compromise the health and well-being of support workers (both formal and informal).

  • Any qualified, registered therapist, ideally with experience in the specific area, should be able to prescribe AT regardless of whether they are employees of health departments, educations departments or disability organisations.