Written by Hearth CEO Justin Scanlon, these articles provide Justin’s lived experience as guidance for providers, Support Coordinators, and people with disability to understand and address newly proposed NDIS frameworks and legislative reform.
- Solving a significant emerging sector issue – The Hearth Home Solution
- Don’t underestimate the family transition process
- Matching – a cornerstone principle of Hearth and The Hearth Home Solution
- Purchasing a home at the end of the process
- Ensure funding alignment – a key step of The Hearth Home Solution
- Visiting my son or daughter’s home
- Critical success factors for setting up long-term housing
- Separation of the House and Service Provider – The Hearth Home Solution
- Individualised support when a home is funded 1:3 – How it works
- Choosing the Right OT for a Successful SIL Application
- Solving a significant emerging sector issue – The Hearth Home Solution
The NDIS identified that about 40,000 Australians with disability who may require 24/7 support as needing a specialised housing response. Only 15,000 of the 40,000 are housed in the regulated, funded Specialist Disability Accommodation (SDA) program. The 25,000 have 24/7 support funding, but no house. It is not easily possible for a family to sort as it involves finding a match, usually two participants/ families and then together sourcing a private rental with a one-year lease.
This is the challenge that the Hearth Home Solution is addressing, working to match participants, ensure the funding lines up and then working with the families to purchase a long-term house.
- Don’t underestimate the family transition process
As a parent of a person with a complex disability I get it. By the time participants might be ready to move out of home, the families have experienced a lot. Those participants the NDIS will fund to live out of home by definition cannot be left alone for the participant to be safe. So, it is either paid support, support workers with the participant or the guardians.
To live your life permanently on the clock takes its toll over time and is one of the many aspects that can cause trauma and long-term stress. Not being able to occasionally lose track of time talking to friends, exercising or whatever is not healthy.
There is also the impact on the family, on relationships, on siblings of permanently having paid support in the family home.
Many families who have had the NDIS support for a majority of their lives may be better able to approach their son or daughter being permanently supported out of home. Time will tell.
Many older carers/ parents who have not had reasonable and necessary support pre-NDIS have had to devote their life actively supporting their loved one, with this support then being enabled by support workers with the introduction of the NDIS. We have found that it can be particularly hard for guardians in these situations when the time comes for transition into alternative accommodation outside the home.
Every participant is unique and every family situation different, however there is common a challenge for families through transition which cannot be underestimated.
- Matching – a cornerstone principle of Hearth and The Hearth Home Solution
A core focus of Hearth Support Services has been matching support workers with participants for in home support and community access. This is based on lived experienced informing that without the right human connection, the support provided is generally sub-optimal. This however is not easy and generally can take some time for the relationship to form. It is the role of the Hearth Relationship Manager to coordinate the match, knowing the family and participant, especially the support worker requirements. Hearth introduced the Relationship Manager role to the sector and is free to the participant, being Hearth’s investment in the set up and ongoing coordination of the support worker team.
Sourcing the right match is not an easy process and is informed by interests and passions, as well as participant support needs. Hearth however has extensive experience to guide. Generally, the support worker who is most confident and does not listen, may not work out long term as they are not as open to be guided by the allied health team strategies. Also, the support worker can learn about the participant’s interests as part of building a long-term relationship.
So matching support workers into participants is a core capability of Hearth which also extends to the Hearth Home Solution.
One additional aspect of the matching for Hearth and housing relates to the matching of families. The Hearth House is the participants long term home, so the families naturally engage with the home when engaging with their son or daughter. Given this, it is important that the families can relate to each other, but do not necessarily need to be or become best friends.
With SIL and the Hearth Home Solution, generally the participants by definition require a reasonable degree of support, either paid or informal. As such, the families also generally play an active role in guiding the participant matching process. This normally starts with the families meeting with Hearth, with the next step the participants meeting in the community. A common not negotiable requirement from families is that their son or daughter remains safe, but then can extend to matching with people who use words to communicate. Importantly, the participants are not allocated to vacant room in a home, but rather consideration is given to ensuring the participants and families are compatible. Again, they do not necessarily need to be best friends but able to share their long-term home.
Matching of participants for housing is a relatively new concept for the sector and on of the greatest challenges in establishing long term housing.
- Purchasing a home at the end of the process
Once the families / participants have been matched, they then get to work together with Hearth to secure the participants’ long-term home. The families, together with the participant’s Occupational Therapists guide the right home. Essentially, it is a normal 4-bedroom home with general accessibility as the participants by definition do not need a fully accessible home, otherwise they would require Specialist Disability Accommodation. There are some cost parameters which inform the suburbs for purchase. Importantly, the homes are in community and not housing estates.
To start with participant matching and then sourcing the homes is a very different experience from what people are used to in the disability sector. Matching to a vacant existing room in a home is more common.
We find that sourcing homes in the outer Eastern and Northern suburbs generally means in metro Melbourne that people are able to generally live within 30 or so minutes from their families.
- Ensure funding alignment – a key step of The Hearth Home Solution
Individuals are granted funding individually by the NDIA. With an average ratio of one to three generally meaning that the participants only need one support worker between three participants while they sleep overnight, the funding throughout the day can be a different ratio of support depending on the participants capacity.
It is important when matching participants to ensure that the roster within the house can work, that the individualised funding when brought together for a house ensures that the participants can be safely supported throughout the time they are home. This is not a given and can be particularly challenging when matching people when one for example has much more complex needs that the other two.
The point is to not necessarily assume is can work out, but include it as an important step in the matching process.
- Visiting my son or daughter’s home
An often-asked question when discussing the Hearth Home Solution which highlights where the sector is at with housing is as the parent or guardian, can I visit my son or daughters’ home?
Of course, you can visit, after all it is your son or daughters long term home. We ask out of courtesy that you call ahead to ensure it is suitable from the perspective of the other participants only. You certainly do not need an appointment. This would be no different that if they were living without a disability in a long term rental with friends.
The Hearth Homes are established to be home settings, much more than institutional settings, the participant’s long-term homes.
- Critical success factors for long term housing set up
For families seeking to guide their son or daughter into supported independent living or SIL, we suggest that there are a number of key success factors to explore as part of the due diligence process.
By definition, those eligible for SIL have a high degree of vulnerability, requiring a reasonable amount of individualised support throughout the day and overnight support. As such, a provider who can be trusted is critical. The trust needs to be earnt over time. No provider can ever guarantee not making mistakes, but the transparency and open communication to respond / rectify is key. At Hearth, we ideally work with participants where they live first to start to get to know the participant and families. This can really assist the transition process into long term housing.
The providers service model is key and how they can ensure that the participant is well supported 24 x 7 with the right skilled support staff.
The provider should also have skill in building and managing the roster of care and funding, which can have profound consequences for the participant if not managed and coordinated.
- Separation of the House and Service Provider – The Hearth Home Solution
Hearth have engaged with the Federal Government extensively on the Hearth Home Solution.
The current solution is identical to that provided to the government with one exception, that the structural solution proposed to the government assumes the government funds the financial gap beyond 25% pf the pension/ commonwealth rent assistance and investors separate from the provider purchase the house.
With the government/ NDIA not currently in a position to pilot the solution, the only option is for Hearth to pay the financial gap and purchase the long-term house (on a 5-year rolling lease). This is not preferred but at this stage the only option.
It is not easily possible for families to source very long term rentals themselves once their son or daughters are granted SIL at a ratio of 1:3. Most leases are only one year and even if the owner was open to a longer lease, the question then comes to who would take on a head lease and what happens if the situation does not work out. Also, the greatest challenge that families have is finding the right match for their son or daughter.
- Individualised support when a home is funded 1:3 – How it works
A support ratio of 1:3 does not necessarily mean one support worker is required to support the 3 participants 24 x 7.
The support needs are determined individually, and it is through the roster of care that the support needs for the house are brought together. Often through the day, the participants are supported individually for community access or to group programs.
Overnight, it is more common for one support worker to be in the house overnight when the participants are sleeping. There is usually funding available in the plan when there are emergency situations when one participant might require a trip to the doctor or hospital.
The support needs throughout the day are determined by the support of allied health practitioners through in the determination of the SIL application.
- Choosing the Right OT for a Successful SIL Application
The SIL application is a big deal for a family. Once funding is successfully granted, it enables participants to be supported 24 x 7 away from their families and b y definition, their families are able to live their own lives as parents and guardians and not carers.
Occupational Therapists are key to supporting the SIL application and not all of them have the experience here. Given the importance of the process, it is recommended that the Occupational Therapist has experience in successful applications.
The implications of the NDIA rejecting the application or not funding to the required level of support is that the appeal process, the AAT ( Administrative Appeals Tribunal ) is the final opportunity. The AAT process can be lengthy and cause a great deal of stress, so should also be avoided if at all possible.
There are Occupational Therapists who have developed a high degree of specialisation in SIL applications and as a result have a high degree of success here.
