There are few times of greater change than the transition from school to post-school. Whilst often a time of huge excitement and anticipation for the future, for school leavers with disability and their parents/carers, this can be a time of stress and uncertainty. The routines and structures of school are gone, and what replaces them is entirely up to you (you’re free to choose) and down to you (it’s your full responsibility). Here are five considerations to try to make this time a little less daunting.
1. Think big
As much as you can, allow this time to be exciting – it’s a chance to sit back, think about what is important to you, and ask yourself what do you want adult life to look like? Remember, you are not just replacing Monday to Friday from 9-3, but building your future. Education, employment and/or day programs are one aspect to consider but others include relationships, friendships, community access and participation, becoming more independent in the home, and all the supports or therapies you might need to support you with these.
The benefit of the NDIS over previous systems is that funding is designed to be individualised and flexible so that you can have higher expectations for adult life. Rather than simply obtaining services or therapies, you can strive for an “ordinary life” i.e. “a life where you have the same opportunities as people without a disability; one that is typical or usual for everyone in modern day Australia; a life where you can pursue your potential and participate in society on an equal basis with others” (NDIS).
Converting your aspirations for adult life into broad, outcome-focused goal statements will help you get the best NDIS plan to support your “ordinary life.” Check out our top tips on writing goal statements.
2. Structure it
Leaving the structures and routines of school behind is one of the biggest reasons why this transition can feel overwhelming. So many aspects of life fall under the structures of school – learning and skill building, peer-group friendships, transport to and from, some therapies – that you now need to build a new structure from scratch.
To create this structure, consider a range of mainstream, government and community options such as TAFE, community interest groups / skill-building classes which could be accessed with a support worker, as well as NDIS services such as day programs and employment supports. School Leavers Employment Supports (SLES) is a good option if you have a goal of mainstream employment within two years of leaving school.
To provide an example, Catriona is a teacher. Her son Yuko is in Year 12 and attends Avenue in Newcastle one day per week whilst he finishes school. Yuko loves being outside and active, so Catriona is looking to balance horse riding and SailAbility activities with more days at Avenue post-school.
“When you get into that adult space, the choice of what to do falls on the participant, whereas school is structured,” she says.
3. Start planning early
There is a lot to consider, and one of the ways to make it less overwhelming is to start planning early. Catriona started looking at services for Yuko over 18 months before he was due to leave school.
“When it came to leaving school, we were going to struggle finding somewhere that suited due to Yuko’s high support needs.Transition is a daunting time, so I started looking early. For Yuko, routines are important, so I signed him up to start at Avenue one day a week, starting out with a short time and building to a full day. A lot of parents aren’t aware that they can start [in post-school services] early. They think they have to finish school, but that’s not the case,” she says.
Selecting your preferred options before school finishes means there is less likely to be a gap between school and post-school whilst you get funding and other logistics in place. Many services will offer open days and trial days so you can understand whether it is right for you. Some services will also facilitate a smoother transition by allowing you to attend the post-school program (e.g. one day per week) while preparing to finish school. This makes the end of school, and the start of post-school, more fluid.
In addition, some post-school services require a behaviour support plan or other specialised assessments or reports in place before you can start and may even have a waitlist. Taking the time to prepare these things in the lead-up ensures there are fewer logistical challenges in the way of a successful post-school transition.
Additionally, the services you’ve chosen can support you to get the NDIS funding you need by providing quotes and service descriptions which you can use as evidence in your plan reassessment (review).
Another tip, if you have the funding for it, is to get a functional assessment from an occupational therapist. A thorough functional assessment can act as supporting evidence for the supports you may benefit from to build your capacity and work towards your goals, across all areas of your life.
4. Consider what is reasonable to expect of ‘informal supports’
What “ordinary life” looks like for parents or carers of adults with disability matters too. For the NDIS to fund supports, they must meet the “reasonable and necessary” criteria, which takes into account reasonable expectations of others (informal supports).
Now is the time to sit down with your family and informal support network to discuss if it is still reasonable and beneficial for them to continue providing the same informal supports as they did throughout childhood and teenage years. For example, if your parent or carer has organised and accompanied you to all leisure and social activities, is it reasonable for them to continue that now that you are an adult? Or would it be better for both their wellbeing and your increasing independence to request funding for a support worker?
As an example, the mum of one trainee at Jigsaw Brisbane is a senior public servant in the Queensland Department of Education. However, she is currently in her third year of unpaid leave from work supporting her son. With her educator background, she has spent a lot of time teaching her son and supporting him with strategies for his language and communication disorder, as well as arranging social outings for him. Her son’s most recent NDIS plan has funding for speech therapy and occupational therapy, but also a support worker so that he has support to implement the strategies from his speech therapy, whilst allowing his mum some space to step back.
Your parents/carers can submit a carer impact statement alongside other evidence for your NDIS plan. They should take into account the impact of providing informal supports on their employment, social connections, relationships, health and wellbeing, and family, and outline what is and is not reasonable for them. If it is no longer reasonable to expect them to provide a support, you will need to provide evidence that you still require that support (e.g from an occupational therapy report), and request funding for it instead.
5. Allow for flexibility
People change over time, and what they want from their lives changes too. The goals, interests and needs of a 17-year-old in their last year of school may be different from those of a 19-year-old building their independence, or a 25-year-old looking to what’s next. An “ordinary life” looks different at different stages of life – and it’s always OK to change your mind. As there are so many changes at school-leaver age, it is worth requesting an NDIS plan length that allows for more flexibility, such as 12 months instead of the default 24 months. Remember, you are not obliged to accept the default plan length, and can instead choose the length of plan that works for you (you will likely need to justify why with reasons such as those provided above.)
Are you a parent of a child leaving school, or have you already navigated the process? What are the things you most wish you had known? Do you have your own experience to share? Share them with us at firstname.lastname@example.org and help build the knowledge and capacity of our community.