This article outlines NDIS funding options that are relevant to late teens or adults living with Prader-Willi syndrome (PWS) who might be considering moving to supported independent living (SIL) accommodation.

By now you have most likely been a Participant of the National Disability Insurance Scheme (NDIS) for many years. (If the NDIS is new to you, go to the PWSA article ‘PWS and the NDIS’.)

Getting an assessment and NDIS funding to move to supported accommodation

Many individuals choose to move out of their family home into supported living homes. This process requires considerable planning. Details regarding the initial planning stages can be found in the article.

Once you have made the decision, you will need to secure NDIS funding. There are two parts: Specialist Disability Accommodation (SDA) funds and Supported Independent Living (SIL) funds. SDA relates to the physical home. SIL relates to support staff within the home.

The first step is securing SDA and SIL funding approval for the type of accommodation you want. See the Summer Foundation’s looking-for-somewhere-to-live-June2023.pdf (summerfoundation.org.au).

Once you understand a little about the process and have explored with your son or daughter what they might like in relation to their future home, we recommend you secure the services of a ‘Complex” Support Coordinator or other housing specialist that knows about the complexities of living with PWS. They should have experience in writing successful NDIS SDA applications. There are many organisations that provide support coordination. To understand what services might be provided by a support coordinator you might like to read the Ablelink website.

Specialist Disability Accommodation (SDA)

The NDIS states that:

• SDA has accessible features to help residents live more independently and have better access to the supports in their home.
• NDIS provides funding through a participant’s plan and the participant, often with additional support such as a support coordinator, then finds and applies for the SDA option that best suits their needs.
• SDA funding in participant plans is used for housing, not services or supports.

There are currently 5 NDIS categories of funding for SDA with numerous options under each category. Each category is designed to meet the specific support needs of the individual. Of the 5 categories, ‘Improved Liveability’ is the one that the NDIS is most likely to approve for someone living with the challenges of PWS. However, some may qualify for ‘Robust’, if they are likely to damage the structure, or occasionally ‘High Physical Support’ is they need full wheelchair and hoist access. You can find more detail regarding the various housing categories under ‘NDIS Pricing Arrangements for Specialist Disability Accommodation’ which is updated every year on the NDIS SDA website.

The whole process may take months, or even years to plan, gain NDIS funding approval and successfully moving to a new home, so we suggest you plan well ahead to avoid the need to respond quickly once housing becomes urgent. You may even need to appeal a NDIS funding decision to ultimately secure the correct SDA funding category for your support needs. Here is an overview diagram of the process SDA eligibility criteria – Summer Foundation

Finding an SDA home or building your own family funded SDA

Securing a vacancy in a NDIS registered SDA home is the next challenge. At the time of writing, choice was severely limited, resulting in lengthy wait lists and long delays. The NDIS has developed an SDA vacancy finder to helps you search for accommodation vacancies that match your needs.

One challenge for many people living with PWS who experience challenging behaviour is the risk of eviction by the landlord. Two ways to lessen or overcome this risk are:

• Ensure that ‘reasonable and necessary’ NDIS funding is available in the person’s Plan to enable appropriate support ratios and support worker training.
• Consider becoming a registered NDIS SDA owner with your son or daughter (and others) becoming the sub-lessee. (An SDA provider will be the head-lessee).

Getting together with other families in a similar situation locally can be another way to find a home. The way the NDIS SDA system is structured, family or friends can become the ‘investors’ who own the home, then rent it to a NDIS registered SDA provider who sub-lets it to your son or daughter. This approach is capital intensive, but your son or daughter will have added security in relation to a ‘tenancy for life’ and the home will attract a reasonable rental return. Please reach out to James O’Brien via social@pws.org.au if you would like to learn more about this option.

Getting SDA pre-approval in your NDIS Plan

Even if out-of-family-home supported accommodation is still a long way from your thoughts, it is advisable to include ‘exploring future housing options’ as a medium or long-term goal at your next NDIS Plan review. Your aim should be to get the appropriate category of SDA funding pre-approval written into your next plan so that you are able to accept a housing offer if an appropriate home becomes available. This is an example of how SDA funding might appear in your NDIS Plan once pre-approved:

• Capital Supports – Home Modifications: Specialist Disability Accommodation (SDA) up to $45,589.68 per year (quote required) I am eligible for SDA as follows: the design category is Robust, building type is house 2 residents, location is VIC Melbourne Inner East, I can access alternative SDA categories and locations within my assessed amount.

Supported Independent Living (SIL) budget

You now have SDA approved and have found (or built) a home for your person living with PWS. Simultaneously you will need to secure ‘reasonable and necessary’ plan funding for supports to enable the person to live an ‘ordinary life’ in that home.

The NDIS guidance on supported independent living states that SIL is one type of support to help you live in your home. It includes help or supervision with daily tasks, like personal care or cooking meals. It helps you live as independently as possible, while building your skills.

SIL is best suited to people with a disability who have higher support needs. This means you need a significant amount of help throughout the day, 7 days a week. This usually includes overnight support.

You can get supported independent living if you live with other NDIS participants or if you live on your own.

Different types of home and living supports will suit different people. Supported independent living is only one of many support options. There may be other home and living options that better suit your needs and preferences.

The NDIS has a SIL funding decision process to make sure they fund the right option for participant’s care and support that will work for them now, and in the long-term. They consider if the supports will assist the participant to:

• Pursue their goals.
• Improve or sustain their functional capacity, helping participants do more things with less support.
• Reduce or sustain their need for person-to-person supports.
• Create better connections with their family, community, health services, education and employment.

Here is a more detailed list of what SIL supports might be included or not included in your NDIS plan.

The NDIS will require detailed information before deciding if they will fund SIL, including:

• Your current situation, goals and aspirations.
• Where you live now and the future home and living goals you want to pursue.
• What supports you get now, and what supports you might need in the future.
• What home and living supports you have looked at before.
• Your independent living skills, and how you might build on these.
• Information about your day-to-day support needs.
• Assessments or reports from a qualified and registered allied health professional or behavioural support practitioner that tell us about your functional capacity.
• Other helpful information about your support needs.
• If supported independent living is value for money compared to other home and living supports.
• If other home and living options better suit your needs.

If you’re new to supported independent living or the NDIS don’t have enough information, they may ask you to get an assessment.  For example, they may fund an assessment by a qualified and registered allied health professional to help them understand what support you need.

Evidence of support need

The most important factor in securing appropriate supports for those experiencing challenging behaviours is to gather ‘evidence’ of support ‘need’. The NDIS requires ‘evidence’ before they can allocate funds to the plan of the participant.

The NDIS will look at evidence such as:

• Any assessments of your disability support and housing needs.
• Allied health professional reports.
• Reports about your daily support needs.

The NDIA expects an application form to be submitted. This is how to do the home and living application process Upskill-Home-and-Living-Supporting-Evidence-2023.pdf (summerfoundation.org.au).

Supplying evidence of need can sometimes be quite challenging to gather and present. We can often see the very real and urgent need, so why can’t the NDIS? Many families find this process frustrating. However, PWSA recognises and supports the underlying concept of ‘evidence’ to ensure the long-term sustainability of the NDIS.

Some ways to gather and evidence of support need may include:

• Keep a diary of behaviours of concern and resulting outcomes.
• Keep records of property damage and repair bills.
• Write incident reports to keep track of personal injuries (or near misses) to the person, family, support workers or members of the public.
• Make detailed notes of occasions when the person has become lost or has absconded.
• List all situations where the person needs support to complete a task, including personal care, community access, support around food, etc.
• For people with ‘complex’ behaviours, seek the assistance of a ‘complex’ behaviour support practitioner to develop an online data collection process for the whole support team (families, extended families, support workers, school/day program staff, specialists) to submit reports (both appropriate and inappropriate behaviours).
• Copies of external documentation such as police reports or doctor’s visits for injury as a result of PWS behaviour.

Depending on the level of ‘reasonable and necessary’ supports that will be required, you might either write up a report of the evidence yourself, or you may seek the assistance of a professional, e.g., a behaviour support practitioner, psychologist/psychiatrist, occupational therapist, GP, etc. If you have a support coordinator, they can guide you in this process.

Setting goals

Once your report detailing evidence of need is prepared, you need to develop ‘goals’ to be included in the NDIS Plan. The NDIS will only approve expenditure as it relates to your goals. The Setting Goals NDIS webpage states that ‘your goals are not directly linked to your NDIS funding’. However, the page goes on to state that they ‘will consider whether your funded supports enable you to pursue your goals and aspirations when (the NDIS) decide to approve your plan’.

Below are some examples of goals that might relate to an adult living with PWS who is moving out, like an ordinary person, but to an SDA home with SIL supports:

• I would like to be supported to participate in meaningful community and social day time activities in a group setting.
• I would like to continue living in my family home [medium term accommodation, etc] while exploring [waiting for] future purpose-built specialist disability accommodation to be found [built].
• I would like support to develop my existing relationships and to initiate and build new relationships
• I would like to move to new supported accommodation where I feel safe and happy.
• I would like support to assess my options regarding supported employment.

Once you have determined goals that are important to you, you will need to state how you will achieve these goals and how you will be supported to achieve them. Here is an example using one of the above goals:

• Goal – I would like to continue living in medium term accommodation while waiting for future purpose-built specialist disability accommodation to be built.
  • How I will achieve this goal – I will utilise funded supports to maintain my current accommodation whilst exploring alternative house arrangements.
  • How I will be supported.
    • The NDIS will fund reasonable and necessary supports to assist me to achieve my goals.
    • My support coordinator will connect me with providers that are best suited to meet my needs.

Note: The NDIS will only allow expenditure that relates directly to the person’s stated goals in their NDIS Plan. PWSA suggests that when setting your goals, you should not be too narrow in your focus or not too specific about various elements. This way the plan can accommodate minor changes, such as a move from one day program/activity to another or replacing one exercise activity with another.

For a major life changes you will need to submit a change in circumstances plan review request, e.g., when you move to a new home.

Positive behaviour support and restrictive practices

One of the challenges faced by many people living with PWS and their families is how best to support challenging behaviour when the person moves to SDA. Parents often feel that no one can look after their loved ones as well as the family can. There might be an element of truth in this, however, remaining in the family home also can be problematic due to aging parents or a lack of ‘informal’ family supports.

Importantly, once the person moves to SDA with SIL, there are very strict legislative requirements in relation the individual rights and freedoms. Support workers cannot arbitrarily remove rights. Most people living with PWS may need support in the form of ‘restrictive practices’ around food, access to money and personal safety. The NDIS requires any restrictive practices to be documented in a Behaviour Support Plan (BSP), prepared by a NDIS registered Behaviour Support Practitioner and reported to the NDIS Quality and Safeguards Commission.

You can read more about human rights, restrictive practices and behaviour support planning in the PWSA article ‘Positive Behavioural Support Planning’.

How to get NDIS funding to prepare and implement a BSP?

Participants may be eligible for NDIS funding in their Plan to secure the services of a behaviour support practitioner to write and implement a Behaviour Support Plan (BSP) to deliver positive behaviour support (PBS). This will be needed for implementing a food secure environment, if nothing else.

Tips are available on how to secure NDIS BSP funding in your Plan from the MyCareSpace website. K McMurchy (of Plan Hero plan management) lists the following:

• The participant needs funding under ‘Improved Relationships’ in their NDIS Plan.
• Specifically, this funding will appear in:
  • Specialist Behavioural Intervention Support.
  • Behaviour Management Plan Including Training in Behaviour Management Strategies.
• In order to get this funding approved, you need to articulate your need in Goals relating to:
  • Emotional regulation,
  • Improving communication skills and/or
  • Improving behaviours and relationships.
• For example:
  • “I want to be able to manage my behaviours so that I can build relationships”
  • “I want to be able to regulate my emotions so that I can be more social and communicate better with others”
  • “I want to be able to regulate my emotions and self-manage my reactions and behaviour”
  • “I want to be able to express myself and engage confidently with others”
• You are seeking funding to develop a BSP and then for someone to implement and/or train other people to put those strategies in place.
• If the relevant funding is not on the person’s plan, a plan review can be requested. An Allied Health Practitioner will need to provide evidence regarding why PBS is needed, e.g., restrictive practices in place, challenging behaviours are impacting safety and/or participation in everyday activities. The NDIS may want evidence of ‘reasonable and necessary’ support need to enable their decision making.

Once you have funding in your Plan within Improved Relationships, PWSA recommends you seek the assistance of a practitioner with ‘complex’ experience or prior knowledge of writing BSP’s for people living with PWS. You can see an example of a behaviour support service on the Sal Consulting website: https://www.salconsulting.com.au

Further Information

What should I look for? For the investigation stage, see Considerations when selecting residential options for adults .pdf (multiscreensite.com)

Support in a residential setting guide for NDIS Supported Independent Living (SIL). Written for SIL service providers, this article will give you further insight into what you can expect from a SIL provider,

If you have any questions or require further detail about the NDIS, please contact us and we can put you in touch with someone else who may have had the same experience.

Thankyou ….

Thanks to Bernard and Choy Saw for assistance writing this article, and to Jen McIntosh, Complex Support Coordinator, Ablelink, for contributions and proof reading.