Joanne Pudney is the mother of a 21-rear old who has high and complex needs. She writes about him and the solution they found in their own back yard. Jack is nonverbal, incontinent, has restricted mobility, and Addison’s disease – and is unable to self-regulate physical and emotional stress, which, translated, means very challenging behaviours.…
Living options and support in the home
Circle of Support
Setting up and maintaining a great living situation for your child, or the child you care for, can take a lot of energy, organisation and – often – creative thinking. Parents and family members often undertake the majority of daily tasks needed to support a child with a disability in the home. The key is to think about what type of environment will suit your child and what support you need to get to this. Here’s some information and ideas on living support for children with disabilities.
Get advice on what living options might work best
Your local Needs Assessment Service Coordination organisation (NASC) can help give input to help you decide what living options are good options. You may also be eligible for Individualised funding (IF) which enables disabled people and their families to directly manage disability supports, such as carer support and child development. Other organisations that could help give information on living options and support include your local Disability Information Advisory Service (including our team at Life Unlimited on 0800 011 008) and other support organisations. It’s never too early to start planning – so start thinking about adult living options from the early teen years if possible.
Consider new approaches
Some regions in New Zealand now offer new programmes and initiatives that use the New Model for disability support – offering greater choice, control and flexibility. These include Local Area Coordination, Enhanced Individualised Funding and Enabling Good Lives (EGL). EGL Waikato does take eligible children 0-17, while the Christchurch EGL is for 18-21 year olds). Read more about these programmes.
Create a Circle of Support
A great tool to help with living options is to create a Circle of Support, including the key people for the child you support, like friends, sports team members, family, work colleagues and key workers. You could invite the people in the Circle to get together regularly to discuss goals and the best ways of achieving them. Use a map to plot where the support people live, or the locations where you visit them. It is a good idea create your Circle of Support as early as possible so the support people can help plan any changes and development as your child grows and becomes more independent. Read more about circles of support on the Te Pou website or have a look at information from Australian organisation Resourcing Families. By the way, a Circle of Support can be called whatever you like – it could be just Charlie’s Coffee Group if you all like to meet at a café.
Grow your community connections
Think about getting to know your neighbours – you never know when you might need their help and most people are happy to carry out small favours from time-to-time. You can introduce yourself to your neighbours face-to-face or there are also online resources available for getting to know your local community such as Neighbourly or suburban/local Facebook groups you can join. In some areas, you can also trade any useful skills you have on Timebank get the help you need for free.
Many people with disabilities prefer to get their support from people and organisations which they naturally come into contact with through their own connections, rather than a service-based approach. Developing a mutual relationship with someone else (perhaps even another family with a child with disabilities) where you can both help each other can often have the best outcome. For example, if your child wants to attend a hobby group that you can’t get transport to, why not call the organiser and see if anyone else suitable attending is willing to pick them up? You could say thanks by helping with petrol or doing some extra club admin duties. These sort of reciprocal relationships can often lead to other great community connections.
Respite breaks for children with disabilities
A change of scene, every now and then, can be really beneficial for well-being. The child you support might have access to funding for respite services, which allows them to take a short-term break at a community-based residence. A respite service should provide a safe, enjoyable environment for them to have a break away from family. There is limited availability, depending on needs and location and you need to talk to your local Needs Assessment Service Coordination organisation (NASC) about whether this service is right or available for your situation. School holiday programmes for children with disabilities are available in some areas – check in with your NASC or school Special Needs coordinator for details.
Other ideas for respite breaks include:
- teaming up with another family you know well and trust and organising weekend ‘swaps’ where you each have the other’s child to visit and vice versa.
- organising a carer or family member to take your child to a suitable location for a break. The website www.oysternz.org.nz has lots of accessible and disability-friendly ideas, along with reviews and advice.
Respite for carers
As a caregiver, it’s important that you are able to take breaks away from looking after the person you support for your own physical and mental wellbeing. Visit our section on Carer and Respite support for information on what support is available and ideas for looking after yourself.