The person living with PWS will benefit from the support services (and equipment) that the NDIS plan budget can buy. The process of applying for NDIS funding and going through regular reviews is a big process. It requires lots of forms, reports and evidence gathering and time.

Who is this guide for?

This guide is for parents, Nominees, informal supports or guardians of children and adults living with Prader-Willi Syndrome (PWS). It aims to assist you prepare for and navigate your way into the National Disability Insurance Scheme.

Purpose

To help prepare you to apply for funding from the NDIS. The funding model changes after children turn 8 years old.

Before your meeting

Preparation is the key to confidently presenting the facts for your application.

The most important element in successfully presenting an application for NDIS funding is to be thoroughly prepared. That means starting early. Your role as an advocate for your family member with PWS is of vital importance, particularly due to the complex needs of someone with PWS.

There are several steps to obtaining NDIS funding.

Step 1: Learn about the NDIS

Educate yourself about the NDIS. To get a good idea of the process, listen to webinars, read brochures, guides and websites and ask other PWSA members about their experience.

Once the person living with PWS has been assessed as eligible, the NDIA assesses how much money the participant needs. This is called planning. Planning may be with an NDIA employee or their delegate (sometimes called a Local Area Coordinator). The documents supplied in support of the plan application are what determine how much money will be allocated in the Plan to support the participant. Information in the submitted documents gets reflected in the Plan, so both need to be thorough and accurate.

Step 2: Identify the functional impairments caused by PWS

Keep a diary that includes every aspect of your PWS child or adult’s life, and how your involvement is different from the usual support of a family member. Include everything that requires support to maintain their health and wellbeing – all of the things that mean ‘care’. List detailed information about how PWS impacts on daily life of your son/daughter and your family See the list of 10 ‘domains’ on which the NDIA will assess your application and reflect those in the diary.

Have a chat with your son/daughter about what is important to them. This question will be asked in the interview process. Without prior conversations that clarify the meaning of the question and give opportunity for thought and discussion, it can be difficult to give an appropriate response on the spur of the moment, and your family member may be unclear how to answer. Consider the following:

• Clearly identify the life goals of the person with PWS and record these insights either as notes, visual mind maps or illustrations.
• Identify how their wishes will be reflected in the application.
• Identify the gaps in their current services and plan – collect information about providers and activities that may help to fill the gaps in the current plan.

Decide whether or not you will need another person to support you with the planning process. It is highly recommended that the adult person with PWS does not go to an NDIS meeting by themselves. Even though they may have some private time with the planner or provider, it is important that you, or someone else who knows the participant well, provides a balanced, evidence-based perspective of their needs.

The NDIA recognises the role of the Nominee. It must be formally applied for. Look at the Nominee details on the NDIS website in case this is relevant to your situation and you need to include it in your planning discussion. If you are considering using a nominee, it is important:

• The person chosen is someone who knows the needs of your son/daughter well – across all the different life settings.
• The person chosen may be a family member, a friend or an advocate.

Before the planning meeting, talk to your advocate or support person about what is important for the person with PWS. Share the information you have collected.

Learn about the planning application and the terminology used.

Decide if you want to manage the money given in the plan budget yourself. There are a few options, each with pros and cons. This resource on budget management options, by a not-for-profit provider, may be useful.

Step 3: Collect evidence

Gather as much relevant background information to support your application as possible:

Provide information about the disability. The PWSA Guide about ‘Assessing Participants’ may help.

Other ideas are in Appendix 4

List what support the person with PWS currently receives and how it is used.

Collect copies of the goals and plans that were used in any applications to receive this current funding.

Make a list of all the providers you currently use and their contact details as part of the diary (See Appendix 3).

Step 4: Attend the Planning Session

Talk to the Planner beforehand. Ensure that they have read the PWSAA Guide for Planners that is available through this website and recognise that some PWS-typical behaviours may be displayed in the meeting.

Be prepared to clearly outline the functional impact of PWS on your child/adult – e.g. my child cannot catch the bus to school because he/she may…

Familiarise yourself with the review (appeal) process in case it is required.

What to take with you:

• The PWSAA Guideline for Planners with you.
• A list identifying any gaps in the current plan. Be bold – the goal is to match what you have now and to ask for what is needed to go forward.
• The diary you have been keeping.
• Any information you have on different supports needed to make the proposed program/plan work.

If your child or adult is already receiving support take the full costed details of the current support. See Appendix 2 for reminders about where funds or in-kind support may be coming from.

Further information

Preparing for your planning meeting Get ready for your first Plan. It will eventually need to be reviewed. You will need to follow a similar evidence collection process when that time comes.

For the most definitive information about all aspects of the NDIS, look at their own Operational Guidelines.

Other organisations regularly publish helpful information about how to work with the NDIA. For example, Carers Australia explains various Plan reviews.

NDIS domains

A list of 10 domains are included in the NDIA assessment. They cover a range of important life functions. When preparing to meet the NDIA representative, try to have evidence for all the domains that apply to the person with PWS:

1. Learning and applying knowledge (e.g. understanding and remembering information, learning new things, practicing and using new skills and ideas)
2. General tasks and demands (e.g. doing daily tasks, managing daily routine, handling problems, making decisions, planning and organising)
3. Communication (e.g. being understood and understanding other people)
4. Mobility (e.g. getting in or out of bed or a chair and moving around in your home and community)
5. Self-care and special health care needs (e.g. showering/bathing, dressing, eating, toileting)
6. Domestic life activities (e.g. preparing meals, cleaning, housekeeping and home maintenance)
7. Interpersonal interactions and relationships (e.g. making and keeping friends and relationships, coping with feelings and emotions)
8. Community, social and civic life (e.g. community activities, recreation and leisure),
9. Education and training
10. Employment

The Diary

Your aim is to present a typical week in the life of your son/daughter. Using the 10 domains above, write specific behaviours, incidents or events that illustrate the needs, and when they happen. You’ll need to include:

What do they do every day?

Where do they do it?

What supports are needed to help them complete tasks/activities?

What is the nature of that support?

Who supports them?

Identify who gives them paid support.

Identify who provides volunteer support – sports clubs etc.

List support from mainstream agencies –Council support, Community Health support etc.

Identify behavioural supports provided and those who provide that support – psychologists, counsellors etc.

Aids and equipment used e.g. timers to aid in switching tasks, iPad for organizational tools, program routines, reminders etc.; speech programs or other educational apps for iPad; orthotics, home exercise equipment, wall posters, etc.

Health

It is important to have health issues addressed at the planning stage and a section on “support to access health needs” should be in the plan. NDIS does not pay doctors but it does pay support workers to attend if included in the plan and if required because of functional and behavioural disability. Take a list that includes:

• Provision for support workers to provide support for an adult while accessing inpatient or outpatient care.
• An itemized list of every area of allied health care that is a part of your child or adult’s life eg dieticians, exercise support, psychology, speech therapist, occupational therapist, physiotherapist, podiatry, etc. Allied health workers can be funded if the conditions for which they are required are an integral part of PWS, rather than acute health events. Make provision for support workers to attend, where appropriate.

Respite

Include the cost in your proposed plan. Record the actual cost, not the subsidised cost that you may have been offered, such as by a local council.

If you are not currently accessing respite services but are aware that doing so would provide opportunity for growth in independence, social and life skills for your child or adult, include this in your list of costs.

Engagement with the community

Parents need to identify the supports their child or adult may need to be engaged in community activities such as exercise and sporting groups and other activities providing opportunities to strengthen social skills.

This may include:

• Engagement in sporting groups e.g. cricket, netball, football, dance, gym – support to learn the rules of the game, or to become proficient in the social and participatory elements of the activity.
• Support to attend and successfully participate in hobby groups, increasing a sense of wellbeing along with practical and social skills.
• Support to participate in Neighbourhood House classes.
• Support to enable the person with PWS to complete programs set by physiotherapists and exercise physiologists.
• Assistance to engage Occupational Therapist support to facilitate skills development – in use or adjustment of equipment or for suggestions regarding safety of equipment.
• Support with travel to and from venues.
• Support to engage with sporting and art activities throughout Australia and to help mentor support staff who are a vital component in facilitating their successful participation in activities.

Early intervention

Identify interventions required to improve the functional capacity and  life of your son/daughter in essential areas:

• Speech pathology
• Physiotherapy
• Occupational Therapy
• Podiatry
• Psychology
• Continence Nurse
• Exercise Physiology
• Dietician
• Specialist dental services
• Lymphedema pumps, stocking, treatment

Once you have identified the areas that will need early intervention you will need to identify who will be responsible for the funding – will it be NDIS, Health System, Early Childhood System or Education System?

Note the NDIS Plan will include all supports funded by NDIS (and those supports funded by other mainstream systems instead).

Transition to employment or training

The transition from school to employment is a time of significant change across many areas of life for a young person with PWS and it is vital that preparation for these changes begins well ahead of that time to make the transition as smooth as possible.

Important considerations:

What are the talents, strengths and interests of your son/daughter?

What are their hopes and goals?

What options are available in the area where you are living?

Investigate all options e.g. TAFE, paid employment, supported employment, volunteer work, day programs, further educational courses etc. It is important to consider all options and view them as potential new pathways for your son or daughter to provide opportunities for them to make a valuable contribution in their communities and to develop further their own life skills and independence.

What support is available for this transition from within their school setting?

What supports will you need to engage to make the transition e.g. travel support; OT assessment; counselling/psychological support; dietician; support that enables your son/daughter to develop their skills and become integrated within the new situation etc? Here are the Guidelines for employment/day programs.

Transition from the family home

If you are approaching a time where your son or daughter is looking towards moving from the family home this is another key transition time. Significant research and planning will need to start and it is important this is built into the NDIS Plan. Any move into a new residential setting will require specific training about PWS for the organization and staff who will be involved in supporting your son/daughter – prior to their move. For example, the supplier of accommodation must be prepared to make their facilities food-secure.

This will be a critical time to build a team of people to support your son/daughter to gain the skills required to be successful in their independence. Those involved in that team may be:

• Family
• Dietician
• Support organization
• Medical team
• Occupational Therapist
• Public Guardian/Administrator
• Psychologist/Psychiatrist/Counsellor
• House supervisor
• NDIS Plan Manager

Here are the PWSA Residential Guidelines.

Wellbeing

A very important factor in developing a sound and successful plan with the NDIS is keeping at the forefront the sense of wellbeing for your son/daughter. When support is provided to strengthen that sense of wellbeing your son/daughter is enabled to function in all areas of their life to reach their potential. The most critical consideration is to be able to provide responsible food security in each setting. When someone with PWS has no doubts, no false hopes and, therefore, no disappointments regarding food they are free to concentrate on all other areas of life.

Regulation of Weight in Prader‐Willi Syndrome: Theoretical and Practical Considerations

Think about what support your son/daughter will need to achieve this.

Other wellbeing considerations:

• Pet ownership – include the cost of caring for a pet if this is important.
• Groups provide an opportunity for a sense of belonging and increase wellbeing so it may be worth considering these and factoring in costs in planning. Consider groups such as:
  • Major sporting groups – many have inclusive opportunities or specialized activities
  • Special Olympics
  • Dancing groups
  • Local gyms
  • Choirs
  • Hobby or craft groups
  • Visit your local council community page for ideas