v youngcare
Submission — Parliamentary Joint Standing Committee on the NDIS (General Issues Inquiry)
Executive Summary
The Productivity Commission said in its Report into Disability Care and Support released 31 July 2011. “Current disability support arrangements are inequitable, underfunded, fragmented, and inefficient and give people with a disability little choice. They provide no certainty that people will be able to access appropriate supports when needed. While some governments have performed much better than others, and there are pockets of success, overall, no disability support arrangements in any jurisdiction are working well in all of the areas where change is required. The current arrangements cannot be called a genuine ‘system’ in which different elements work together to achieve desired outcomes”.
This was Youngcare’s experience, the disability system was broken. Youngcare had daily contact from people with disabilities who had no funded supports, had been on a state disability service waiting list for years but with no hope of ever receiving the supports they required and indeed, deserved.
Youngcare applauded the introduction of the National Disability Insurance Scheme (NDIS) and what it has meant to tens of thousands of people across Australia. This submission will explain some insights from pre-NDIS to now and how Youngcare has seen the transition from a SDA Housing Provider, a grant funder and advocate for those who are unable to speak for themselves.
Introduction
Thank you for the opportunity to make this submission to the Parliamentary Joint Standing Committee.
Since 2005, Youngcare has been creating a future where every young person with physical disabilities and high support needs has access to safe and appropriate housing options. A home to call their own. That is not in aged care.
We ensure young people are provided with the accommodation, home modifications, and personalised support they need to live where and how they choose, and we work towards an Australia where there is freedom, dignity, and choice for young people with severe physical disabilities. In Australia today, there are thousands of young people with physical disabilities living in permanent residential aged care and thousands more living on their own in inappropriate dwellings, with aging parents, at risk of homelessness or homeless.
There are even many more thousands living in various state owned facilities.
With the ongoing invaluable support of donors, Youngcare creates choice, independence, and freedom for young people with physical disabilities, by helping them choose where they live, who they live with and how they live their lives. We do this in three different ways:
By providing financial support of up to $10,000 to fund necessary items, modifications and supports that are not covered by the National Disability Insurance Scheme. Over $1 million in financial support was distributed by Youngcare in the 21-22 financial year as part of the At Home Care Grants and the Home Support Grants program.
We build homes. To date, Youngcare, together with our partners, have built homes for 93 young people with severe physical disability (a mix of apartments, share homes and villas). We currently have another 15 bedrooms under construction and many more in various stages of planning.
We offer free information and advice for people with disabilities, their families and carers, through the Youngcare Connect support line. The Youngcare Connect team speak with over 3000 people each year, with a total of 11,000 conversations on topics such as housing requirements, support and difficulties encountered with navigating the often-complex disability sector.
t 07 3041 3400 f 07 3041 3411 e info@youngcare.com.au w www.youngcare.com.au youngcare | SUNCORP
PO Box 725 Spring Hill 4004 - ABN 17 113 923 032
This submission will focus on the Youngcare Grants program. In 2009 Youngcare having observed the considerable gaps in funding for essential equipment, services, and home modifications, Youngcare launched the At Home Care Grants, with the support of corporate and philanthropic support; these grants designed to assist young people 16 – 65 with high physical support needs who identified as at risk of entry into aged care or other institutional care. To date Youngcare has distributed over $10m million to more than 1600 young people with high physical support needs.
With the introduction of the National Disability Insurance Scheme (NDIS) Youngcare has seen changes to the disability landscape, people who evidence a need are now able to receive reasonable and necessary supports, essential equipment, home, and vehicle modifications Specialist Disability Accommodation, (SDA) and allied health supports. After years of a broken state-based disability funding system the NDIS is a significant step forward and a generational change to providing appropriate supports to people with a disability.
In this submission we will show comparisons Youngcare has seen in our grants pre introduction of the NDIS to what people are applying for now. This will identify some gaps we have seen and offer some possible solutions to overcome how some people accessing vital supports and equipment.
At Home Care Grants
Youngcare offers the At Home Care Grants (AHCG) to eligible people across all states and territories, twice yearly, where people with high physical support needs can apply to assist financial support to purchase essential equipment, toward the purchase of a vehicle or, toward home modifications to make their home accessible. The aim of these grants is to assist this cohort to remain in their home and increase their independence. The AHCG funding, often used by applicants to pay any gaps in NDIS funding (queen/companion hi lo beds) or toward purchase of a vehicle that NDIS funding will fund modifications.
We use a simple criterion to be eligible for the grants, to assist our panels to make consistent decisions:
- Is the applicant aged 16 – 65 years?
- Does the applicant have diagnosed permanent physical disability?
- Is the applicant at risk of entering inappropriate housing?
- Is the funding essential to the applicant remaining at home?
We ask each applicant to evidence they have sought and exhausted other funding options.
Common items people apply for in the AHCG pre-NDIS:
- Medical aids and equipment
- Floor and ceiling hoists
- Respite and in home care supports.
- High lo beds
- Bathroom modifications
- Mobility aids and equipment
Common items applied for post NDIS:
- Air conditioning
- Vehicles
- Kitchen modifications
- Concrete paving
- Communication aids
Youngcare is very proud of the impact these grants have had on the individuals, families, and communities where they have been funded. We have had feedback that funding received has been lifesaving or life changing. In 2013 Youngcare funded $3000 to a 21-year-old man with an acquired Brain Injury, who had been in hospital for over 400 days, to purchase a hi lo bed. This was the difference between him to move into accessible disability housing or residential aged care. At that time there was no other funding available for hi lo beds in Queensland.
Pre NDIS through to full implementation (2009 – 2019)
From 2009 until the NDIS was in most jurisdictions, we found the vast majority of our At Home Care Grant applications were for essential items and services such as Respite care, in home support services, ceiling hoists, bathroom modifications, hi lo beds, power wheelchairs, electric door openers, access ramps and medical items such as cough assist and suction machines.
The data below we have highlighted three items, Electric hi lo beds, air conditioning and accessible vehicles. Although we did not experience high demand for air conditioning or vehicles until after the NDIS was established in most jurisdictions. We found the NDIS funded most of the high demand items above once it was established in the different regions.
These items were essential to people being able to remain at home. Its been Youngcare’s experience in delivering the AHCG, that the state-based funding did not have the resources to supply or deliver on the ever increasing demand. Youngcare funded people who had been on state disability services waiting lists for 10 years or more, with little or no hope of ever being funded, as the funding was capped. Further, services were only offered to people if someone else died and no longer required the service and they had to been seen as the highest priority at the time a vacancy became available.
Applications for respite was remarkably high as families caring for their disabled loved ones cried out for a break as they were experiencing carer fatigue and often stated in their applications, they had considered relinquishing care to the state as they could not continue without support.
Youngcare has found that the AHCG continues to make a dramatic difference to individuals and families and often was the difference between them being able to remain at home or, having to enter institutional care.
There was and still is evidence that these grants saved government significant money by preventing entry into institutional care and in several cases hospital admissions.
One example was a family from New South Wales applied for $10,000 for weekly in-home physiotherapy sessions in 2013, they explained that their 29-year-old son who had an Acquired Brain Injury when he was 16, he would typically have to go into hospital at least once a year, due to chest infections, the shortest admission being two weeks with the longest 12 weeks. Youngcare funded the application and the young man received weekly physio at home and did not have any admissions to hospital over the next 10 months. His father called just before applications opened the following year to see if he could apply again, but because he and his wife had learnt how to do the physio during the sessions – they only wanted funding for 6 weekly sessions so the physiotherapist could assess that everything was on track – again no hospital admissions the following year and in the next year dad called again to see if they could apply for $3000 so they could employ a registered nurse for three days as they felt confident to take a short holiday for the first time since their son had his accident.
This is a great example that by funding $19,000 over three years the grant meant this young man did not have to go into hospital. From information available this meant a potential cost savings to the NSW Government of between $28,000 - $168,000 for admissions to hospital, (based on $2000 per day for a hospital admission 14 – 84 days). The greatest outcome is that this family did not have the stress of any hospital admissions and in year three, felt confident enough to take a short break.
This is just one example of many, that Youngcare has assisted families that deserved help and saved the government a small fortune.
Funding Table
The table shows funding Youngcare At Home Care Grants 2009/10 — 2022/23 for Hi lo beds, purchase and install air conditioning and funding toward purchase of vehicle suitable to be modified for wheelchair access.
Note:
Funding for hi lo beds may be all or part/co-payment.
Funding for air conditioners, funding for full purchase and install.
Funding toward purchase of vehicle, applicant must show they have means to fully fund purchase with Youngcare contribution.
| Year | Item | Number funded | Amount | Grant round funds distributed | Total people funded | % of total spend |
|---|---|---|---|---|---|---|
| 2009/10 | Bed Air conditioning Vehicle |
0 0 0 |
$0 $0 $0 |
$137,291 | 16 | 0% 0% 0% |
| 2010/11 | Bed Air con Vehicle |
1 0 1 |
$6,960 $0 $7,515 |
$159,476 | 22 | 4.3% 0% 4.7% |
| 2011/12 | Bed Air con Vehicle |
12 2 4 |
$55,619 $7,402 $28,800 |
$372,082 | 72 | 14.9% 1.9% 7.7% |
| 2012/13 | Bed Air con Vehicle |
9 0 2 |
$34,172 $0 $20,000 |
$426,622 | 87 | 8% 0 4.6% |
| 2013/14 | Bed Air con Vehicle |
13 5 7 |
$63,356 $22,090 $67,174 |
$589,907 | 103 | 10.7% 3.7% 3.3% |
| 2014/15 | Bed Air con Vehicle |
9 7 2 |
$75,392 $22,763 $20,000 |
$651,807 | 116 | 11.5% 3.4% 3.0% |
| 2015/16 | Bed Air con Vehicle |
6 1 2 |
$34,620 $1,435 $17,000 |
$759,051 | 112 | 4.5% 0.18% 2.2% |
| 2016/17 | Bed Air con Vehicle |
15 1 2 |
$77,894 $1,599 $10,000 |
$864,801 | 131 | 9% 0.17% 1.1% |
| 2017/18 | Bed Air con Vehicle |
14 7 3 |
$71,131 $34,244 $30,000 |
$764,196 | 119 | 9.3% 4.4% 3.9% |
| 2018/19 | Bed Air con Vehicle |
18 9 0 |
$96,647 $26,763 $0 |
$961,497 | 137 | 10.05% 2.7% 0% |
| 2019/20 | Bed Air con Vehicle |
4 16 7 |
$26,757 $65,950 $66,376 |
$652,630 | 87 | 4.09% 10.1% 10.1% |
| 2020/21 | Bed Air con Vehicle |
5 10 13 |
$22,076 $29,255 $119,470 |
$675,842 | 108 | 3.2% 4.3% 17.6% |
| 2021/22 | Bed Air con Vehicle |
5 13 15 |
$21,679 $38,170 $142,825 |
$739,492 | 126 | 2.9% 5.1% 19.3% |
| 2022/23 | Bed Air con Vehicle |
9 21 26 |
$58,233 $65,627 $259,985 |
$678,060 | 101 | 8.5% 9.6% 38.3% |
| Totals | $8,432,754 | 1,337 |
- Youngcare At Home Care Grant data 2009 — 2023
Hi lo electric beds
Electric hi lo beds are vital for a person with high physical support needs, to enable safe supported transfers to and from bed into wheel/shower chairs. Pre NDIS, we found through our grants program that hi lo beds were not always funded by state government programs, or the gap between state funding and the required co contribution was prohibitive to many. You will note in the funding table that from 2011/12 – 2018/19 there was significant demand for funding to purchase these beds. Since the NDIS has become fully operational, the demand has dropped off, to where people are seeking funding for the gap between what the NDIA will fund for a single bed to enable them to purchase a queen/companion bed or funding is being sought by people with high physical support needs who do not qualify for the NDIS due to their residential status. In the current 2022/23 financial year we approved 9 applications for hi lo beds (finish this once checked the outcomes), these were to fund the gap for (5) people to purchase a queen/companion bed and purchase beds for (4) people who do not have NDIS funding due to their residency status.
Youngcare rational to fund gap payment
From our experience those people seeking gap funding for queen/companion beds are usually in a relationship or have children – in both cases we believe from a basic human perspective all adults should be able to share a bed with their partner and to experience their children coming into their bed. For a person with a disability, particularly an acquired condition, it is a protective factor, as from the moment the person experiences a serious disability their relationship changes, their partner goes from being their friend, lover partner to becoming their carer.
Then once they return home to not only getting used to the changes in their lives, but the needed specialist equipment also (hi lo bed included), most homes bedroom are not large enough to store the equipment the hi lo bed plus another bed for the partner, so they move into separate rooms. If support is needed over night the partner usually has to get up go into the room where the person with a disability is and provide supports – if they are able to remain sharing the same bed, they can continue to experience the closeness, touch and intimacy. This has a positive impact that has been relayed back to us from grant recipients.
Case study
Sharon is a 62-year-old lady who lives with her husband, autistic son and daughter. Her husband is her full-time carer and their children. Sharon is diagnosed with a very rare neurological condition called Multiple Systems Atrophy. It is a degeneration of nerve cells in specific areas of the brain, which control movement, balance, and other autonomic functions of the body. It is progressive in nature and presents with characteristics like Parkinson’s disease but is nonresponsive to medications which assist people with Parkinson’s disease. There is a shortened life span which varies from person to person and how quickly the systems will “shut down”.
Sharon is mostly bed bound. She has a wheelchair which she can now use with the installation of a suitable hoist and sling. She is in chronic pain and is dependent for most of her activities of daily living. She also has a specialist mobile recliner chair which Sharon finds more comfortable.
Sharon and her husband Rod have not been able to sleep together in the same room for over 10 years as she has been using a hi lo bed set up in her living room. When asked what the one thing was, they both really missed, it was being able to spend some time (or nights) sleeping next to each other. They missed the “hugs” and being able to share intimate space in privacy. Sharon’s condition is degenerative, and she and Rod would really like to be able to spend as much time together as possible. Sharon was approved for $5227 to purchase a companion bed for her husband.
A simple grant of just $5227 has changed that persons life and improved dignity and mental health – demonstrably.
Recommendation
Although Youngcare would argue that it should be considered reasonable and necessary that all adults who choose to have a could/queen bed should be funded, we recommend:
- Where a person with a disability that requires a hi lo bed is in a relationship or has children, who choose to sleep in a queen/companion bed, and clinical evidence is submitted from a suitably qualified Allied Health Professional, that the bed is appropriate to their needs; that the NDIA consider each circumstance and fund these beds.
- Where a person with a disability that requires a hi lo bed and has a current or future goal that they would like to enter into a relationship where they may share a bed and choose to sleep in a queen/companion bed with their partner and clinical evidence is submitted from a suitably qualified Allied Health Professional, that the bed is appropriate to their needs; that the NDIA consider each circumstance and fund these beds.
Air conditioning
From 2009 we experienced little demand for air conditioning in our At Home Care Grants, as we found people were applying for the very basic essentials such as respite, wheelchairs, ceiling and portable hoists, bathroom modifications
to enable the person with a disability to access their bathroom. However, as the NDIS was being rolled out, we noted an increase in applications for the purchase and installation of air conditioning. The NDIS was funding those other essential items that that state-based system could not, so people were now looking at the next layer of what was considered essential. For some people whose condition effects how they regulate their body temperature the impact of changing weather conditions, particularly hot weather not only on their comfort, but in many cases can have serious and degenerating impacts on their longer term health outcomes.
From zero applications for air conditioning in 2009 – 2011 we experienced a notable increase as NDIS was fully rolled out in 2019 (16), 2020 (10), 2021 (13), and 2022 (21) people funded this represented a significant increase in total spend for Youngcare in our grants program. Our experience indicates that for around $4,200 (depending on location) we can fund two air conditioning units and installation into main living and participants bedroom, this is a low cost, but has such a high and immediate impact for the person.
Case study
Brendan is a 42-year-old and lives with Limb-girdle Muscular Dystrophy which is progressive muscle wasting disease that affects his arms legs and trunk. Brendan is dependent on his power wheelchair for all mobility.
Due to reduced muscle activity, Brendan cannot adjust his body temperature through movement. If it is cold, he needs a lot of heat to stay warm. If it is hot, then he needs air conditioning to remain cool as he cannot independently engage in self-cooling practices such as spraying himself with water, removing clothing, getting an icepack etc. If he is unable to control his body temperature, he loses the control of what little muscle tone he has, which keeps him bed bound and unable to sit up. Brendan is also susceptible to developing pressure injuries. The proposed split system air conditioning will support him to avoid environmental conditions which can increase this risk (e.g., sweating) and prevent wound healing.
When Brendan is unwell, his home environment is not suitable for him, and he needs to go into hospital where there is heating /cooling to help him control his body temperature.
NDIS AT application was denied despite Doctor & OT reports as it was deemed an everyday expense.
Youngcare approved a grant of $2,447 for air conditioning unit and installation.
Recommendation
Our experience of funding over 100 air conditioners to applicants with conditions that effect their ability to thermo regulate such as, Multiple Sclerosis (MS), Motor Neurone Disease (MND), Spinal Cord Injury, Stroke, Parkinsons and, Acquired Brain Injury (ABI), tells us there is significant health and wellbeing benefit of air conditioning to lessen the impact of not being able to regulate their body temperature.
We recommend that where a person with a diagnosed condition such as the above and evidence a need due to their condition that a single consistent process must be implemented to consider each case by its merits. Much like Ryans Rule in Queensland Hospital settings, this process should be a standard procedure that alerts NDIA planners that a series of actions must be taken to explore that person’s evidence to test if they meet the criteria that funding air conditioning should be considered. Anecdotally we understand that some people have been approved funding for air conditioning, but this is inconsistent.
We see this as not only a human approach to alleviate unnecessary suffering, but also a strong economic solution as the preventative costs of purchase and installation of air conditioning would far out way the costs of potential hospital admissions when the impacts of Impaired thermoregulation is experienced.
Vehicles.
When the NDIS was introduced in 2013, it was always proposed as an all of community response to improving access and funding to people who qualify for NDIS funding. Youngcare’s At Home Care Grants funding toward the purchase of vehicles suited to be modified to make them wheelchair accessible is one example of how the NDIS and the community (in this instance Youngcare) provide an incidental collaboration to create improved outcomes for people with a disability.
The NDIS won’t fund the cost of purchasing a vehicle, but they will fund the essential, reasonable, and necessary costs of modifying a vehicle to make it accessible to a person in a wheelchair. Transport is crucial to people with a disability to enable them to access their communities, attend appointments, education, employment and enjoy social activities. Public transport for people with a disability can be challenging and taxi services are inconsistent and unreliable.
The cost of purchasing a vehicle suitable for modification (Hyundai Staria, Kia Carnival) is anything between $60,000 - $70,000, the help we can provide toward the purchase is often the difference between a family being able to purchase a suitable vehicle or not. We are limited on the number of people we can support each year due to limited funds. We limit the marketing of the grants, so we are not overwhelmed with applications and not able to then fund. With the funding we have available we try to only encourage people who have all other funding in place.
Case study
Stephanie is a 28-year-old lady living with Ataxia-telangiectasia. This is a rare genetic neurological disorder that affects the nervous system, immune system and many other body systems resulting in severe disability. This condition is degenerative and life limiting. Stephanie is reliant on others for support across all areas of daily life, with a large portion of her care needs currently being met by her supportive parents. Since commencing NDIS, Stephanie has received access to a support worker and this has opened a world of opportunity to Steph, enabling her to participate in groups and social activities as a young adult. This new social world has been invaluable in adding meaning to Stephanie’s days however she remains significantly limited due to the impact of her disability.
Recently Stephanie’s ability to control her body has decreased and she will require a new manual wheelchair with increased postural supports. This new chair will not fit into the storage space of a standard vehicle and would need to be completely disassembled for transport. Currently Stephanie is limited to attending events in a personal vehicle, however due to her fatigue and weakness she is required to limit the duration of her outings to ensure that she has adequate strength left to transfer in and out of the vehicle.
This is upsetting for Stephanie as she thoroughly enjoys her outings and would like to be able to participate for longer. Additionally, her ability to safely transfer into a standard passenger vehicle is reducing due to the progressive nature of her condition. This means that on a bad day, Stephanie would not be able to leave her home due to being unable to transfer. Stephanie has recently been provided with a powered all-terrain wheelchair, however there is no way to transport this device meaning that it is limited to use around the family home. Provision of a wheelchair accessible vehicle would allow Stephanie the opportunity to expand her current social outings and visit places without flat access, such as national parks and beaches.
Stephanie applied for $10,000 to contribute towards the purchase of an accessible vehicle. The NDIS would fund the required vehicle modifications and her family will contribute the additional funds. The grant was approved, it offers Stephanie the opportunity to live her life to the fullest, enjoying the beauty of her local area and accessing the community groups that she has come to adore for as long as possible.
Observation
Again, our data shows that from 2009 until the NDIS was established in all jurisdictions that few people sought funding to assist with purchasing vehicles. Conversations through our Youngcare Connect line people clearly state, they were so overwhelmed by other essential items and supports that were out of reach.
As stated early in the submission the NDIS has altered the landscape of disability in Australia and we can not compare 2023 with 2009. Accessible transportation is more important than ever and access to it promotes connections to community and increased independence. Youngcare will continue to offer funding toward the purchase of vehicles that can be modified through NDIS funding, however we predict increased challenges to secure ongoing funding to support the grants as all parts of the economy are experiencing tighter economic conditions.
Conclusion
The importance of the NDIS to hundreds of thousands of Australians with a disability can’t be overstated, the difference to people’s lives has been seen time and time again. As with any initiative there will be frustrations particularly when it is such a large public policy change.
Through this submission we have tried to show that from a grant providers perspective the NDIS is doing many things right, we are also trying to display that there are opportunities to improve in some ways that could make significant difference to the participant experience when they are seeking essential supports in their plans.
We reference to Ryans Rule in the submission as an example of having a standard trigger in place that sets of a set of procedures that must be followed as one way of developing a transparency that enables participants to see that decisions that impact their lives are consistent.
The recommendations Youngcare make are in line with our experience delivering grants in pre-NDIS and in the NDIS environment.
We welcome any opportunity to speak to this submission.
Thank you once again for this opportunity.
Youngcare Chief Executive Officer
References
Productivity Commission Report into Disability Care and Support Volume 1 - Inquiry report - Disability Care and Support (pc.gov.au)i Impaired Thermoregulation Impaired Thermoregulation | PM&R KnowledgeNow (aapmr.org) https://journals.physiology.org/doi/full/10.1152/japplphysiol.00460.2010 https://www.sciencedirect.com/science/article/abs/pii/B9780444640741000434 Ryans Rule Queensland Health Ryan’s Rule | Clinical Excellence Queensland | Queensland Health