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Early intervention and the NDIS for parents who are new to disability support

Information for families and carers starting out with the NDIS

If you’re a parent or guardian of a child with a disability or developmental delay, you know you’ll do anything to make sure they get the care and support they need to learn, grow, and be happy. Through the Early Childhood Early Intervention program, the NDIS promises all these things, but for someone just starting out the vast amount of information can feel a little daunting. 

How do you know if your child can access the funding or support? Who do you speak to? How will the early intervention program and the NDIS help? How do you plan for your child’s future under the NDIS? And how do you get the most from your NDIS funding if you’re afraid you’re going to leave something out?

1. NDIS for parents: Is your child eligible to receive NDIS funding?

New research suggests that developmental delay occurs in up to 10% of children under eight. Early intervention for these children and those with a disability can have a massive difference in their outcomes over their lifetime. If you think your child might be delayed, you should seek advice as soon as possible from your GP who might refer you to a specialist or paediatrician for initial diagnosis or advice. When the NDIS is rolled out in your area, you’ll need to know whether your child will be eligible for funding under the scheme. Children of different ages have different criteria.

Birth to 6 years

Children aged 0-6 years, don’t need a diagnosis of disability to benefit from the NDIS. But your child must:

1. Be an Australian citizen, a permanent resident, or other visa holder with a Protected Special Category Visa

2. Live in an area where the NDIS is operating (or will be operating).

Children 7 and older

If your child is aged 7 years or older, they can use the NDIS if they meet the access requirements. They must:

1. Have a permanent and significant disability that affects his/her ability to take part in everyday activities

2. Be an Australian citizen, a permanent resident, or other visa holder with a Protected Special Category Visa

3. Live in an area where the NDIS is operating

Then, if your child’s eligibility has been confirmed, what do you do next?

2. Understand who to contact first

Once you have a diagnosis or have decided to take action based on your child’s developmental delays, it can be hard to know who to contact first.

Birth to 6 years

The NDIS has a uniformed approach for supporting very young children and their families. It is called the Early Childhood Early Intervention approach (ECEI). Your first step will be to contact an Early Childhood Partner to discuss your NDIS options and ask questions about the types of support your child needs.

You’ll discuss your child’s needs and goals.

Your child does not need to move straight into an individualised NDIS Plan.

Your Early Childhood Partner will work with you to decide on support for your child and your family. You should gather any medical reports and other information that may assist your Early Childhood Partner to understand your child and their needs. This will help them understand how their disability or developmental delay impacts their daily lives, and determine the support they will need to get the best outcomes.

You might discuss:

a) how your child manages daily tasks and activities

b) the support your child needs to complete different tasks

c) the informal support your child gets from family and friends

d) support from other services (kindy or school)

e) the formal support they get from service providers

The types of help your NDIS Early Childhood Partner might give you are:

a) guidance and information to help you make decisions about the support you and your family need

b) emotional support and help your family adjust

c) referral to other services such as community health services, playgroups or peer support groups

d) help to find early intervention support for your child, such as speech or occupational therapy

If your child needs longer-term support your Early Childhood Partner can help you create a plan and access the NDIS.

Children 7 and older

If your child has been given a diagnosis of permanent and significant disability by a paediatrician or specialist, then you’ll need to request to be referred to an NDIA Planner or NDIS Local Area Coordination (LAC) Partner to prepare for your child’s first plan.

Take your time pre-planning and expect it may take multiple meetings.

To assist with pre-planning, download the First2Care app, and register free to use the step-by-step planning tool inside the ‘My Life Now’ section within your profile. You’ll be able to invite your existing support providers and carers to help you complete this, before printing out the NDIS Planning Workbook direct from the app. Bring this to your final planning meeting with the NDIA.

TIP: More information on preparing for the NDIS for families and carers in this post.

Your child’s plan should be goals and outcomes focused and include a ‘goals and aspirations statement’.

It will take into account:

a) How your family takes care of your child right now

b) How carers assist your child or is needed to assist them and you

c) Who the important people are in your child’s life

d) Your child’s living arrangements

e) Their regular activities and social participation

f) Your child’s education

g) What’s working well in their life and what isn’t

h) What things they are good at and enjoy

i) What skills they’d like to build upon, and what they will need as they grow

These will form the basis of how you structure support to achieve your child’s goals and objectives. These objectives will be influenced by:

a) What you/or your child wants their life to look like now, and in a year or two

b) What informal supports your child receives and what you, your child, your family and friends can do to help them achieve their goals

c) What formal supports your child has to help them (mainstream, community and disability supports)

d) What is hindering your child’s ability to achieve their goals

There are lots of planning tools out there to help, and First2Care is designed to facilitate the conversation around what goals your child would like to achieve, and make it easy to be prepared.

3. Be prepared and informed with your plan

Now you know the early intervention program and the NDIS has been designed to facilitate support early in a child’s lifetime, to improve their outcomes later in life. If your child needs access to the NDIS it pays to be informed before you rush into creating your first plan with an NDIA Planner.

Understanding these key elements, and how they translate into helping your child achieve their goals, are at the core of their first NDIS Plan. It’s vital you’re informed about your options before you enter the planning phase with your early childhood partner, NDIA Planner or NDIS local area coordination partner.

Because your plan is crucial to your NDIS success. As I mentioned in my recent post, the government has a calendar of local information sessions run by providers in your area that you’re welcome to attend. Disability Services Consulting also run a NDIS Price Guide 101 webinar on using the Price Guide to understand the NDIS terminology and your supports to enhance your outcomes.

Parents and guardians: Ask questions. Lots of them. And if you get different answers from different providers, keep asking, contact your LAC or contact the NDIS.

The key elements of the NDIS you know are:

A lifetime approach – long-term funding, for individualised care and support so people can receive flexible, personalised care, as their needs change

Choice and control – The ability to choose how you receive your child’s or your support and who provides it, as well as how you manage your funding

Social and economic participation – Support from early in a person’s life to enable them to reach their goals and live a meaningfully within their community

Focus on early intervention – Investment in preventative and remedial therapy to improve outcomes in the future

4. Be open with your child’s mainstream supports  

Mainstream services such as schools and educational facilities pay a vital role in your child’s life. They help your child form connections, share values and reach educational goals. While the aim of schools and educational facilities is to meet an individual’s learning needs, the NDIS focuses on addressing functional needs of the child that result from their disability.

It's your school’s responsibility to provide ‘reasonable adjustments’ to ensure your child is not at a disadvantage, and are given the same opportunities and choices as other students.

Jessica Stubbins of Disability Services Consulting says your child’s school should:

1. Employ teachers, learning assistants and facilitate access to educational resources

2. Obtain learning-specific aids and equipment

3. Adjust the educational curriculum to enable people with disability to access it

4. Adjust campus buildings, including building ramps and obtaining hoists

5. Transporting students with a disability on the same basis as other students for educational activities (such as excursions)

As the NDIS rolls out, the scheme should complement these provisions for reasonable adjustments, provided you take a collaborative approach to their educational goals. The NDIS will fund support for therapies (such as occupational and speech therapies), technologies or equipment (such as hearing or mobility aids) to help your child with their everyday lives and activities, as well as modifications to your home (such as ramps and accessible showers/amenities).

They won’t fund support that your child’s mainstream services are responsible for. This is why a collaborative approach to your child’s personal and educational goals is important.

TIP: Did you know that First2Care can help you collaborate with supports and services? You can invite early childhood partners and supports to connect and help coordinate or manage your supports.
5.   NDIS for families and carers 101: Translating needs into goals

How do you make sure you have funding allocated for the things your child needs in their NDIS plan? You plan with outcomes in mind.

Your child’s goals determine what funding they will be given, and this is translated from social, emotional and functional, everyday needs. So how do you include meaningful goals for your child to get the most from their funding?

Consider Jenny. Jenny is a fictional 5-year-old girl who has difficulty hearing and requires a hearing aid to assist her. Jenny is learning to swim because she enjoys it and because her mother understands that being able to swim might one day save Jenny’s life.

Right now when Jenny gets in the water, she needs to take out her hearing aid. This means that she cannot hear her instructor during the lesson and her mother often needs to translate the instructions for Jenny. She needs a waterproof hearing aid for her goal of being able to swim independently.

You can see here that her need for a waterproof hearing aid, and her funding request for one, are both related to her goal.

When you frame the request in this way, it is clear to your NDIA Planner why you are requesting that funding and they can translate that into a ‘Statement of goals and aspirations,” which is required within your plan.

Most problems with plans occur when the planner misinterprets the needs and goals of the participant.

There is no limit to the number of goals you can include in your child’s first plan.

TIP: Make a list of all your child’s social, emotional and functional, everyday needs you can begin to see how you can translate these into goals of growth, and social and emotional independence.

Once in place, you’ll get to review your child’s NDIS plan regularly. Most people opt for 12 monthly reviews, but I have also read examples of 6 month or 18 month review periods built into plans. However, if you’re unhappy with your plan, you can request an early review.

Applying for Early Childhood Early Intervention or NDIS access for your child need not be a headache if you talk to the right people, and ask lots of questions.

Read more about the benefits of working with a Plan Manager. Alternatively, register with our FREE NDIS Plan Management platform, so we can start helping you best manage your plan today.

Read more about First2Care’s plan management features. Over to you

Are you a parent or guardian of a young child? What experiences have you had with early intervention or the NDIS? We’d love to hear about it.