Advice and information for those caring for a disabled family/whānau member
The intent of this document is to provide you with some information about key services that can assist you and your child through The Middle Years (7 – 18 years of age). This is the second of four resources that will provide information from ‘Birth to Getting Older’. This is a living document and the sections will be finalised once all the sections have been completed (The Early Years 0 – 6, The Middle Years 7 – 18, Adulthood and Getting Older). Education is included in a separate document called ‘Mapping Educational Opportunities’.
Child Care Assistance – before/after school, holiday programmes and camps …
There are many options for before and after school care in New Zealand, as well as programmes for children during the holidays. Ask your school about the options they may have available, as many schools offer before school and after school care. There are fees for before and after school care programmes. Providers that are part of the government’s OSCAR (Out of School Care and Recreation) scheme receive funding that can subsidise the cost.
NB: In New Zealand, children under the age of 14 must not be left alone without reasonable care and supervision.
Click here to find childcare/holiday programmes in a location close to you. There are lots of childcare/afterschool/holiday programmes to choose from. Find out what each programme offers and which one would best suit your child.
Recreate NZ – operates in Auckland, Waikato, Bay of Plenty and Christchurch and provides high quality out-of-home experiences for youth with learning disabilities. They have three different age categories from juniors (10 – 15 years) to youth (15 – 25 years) through to young adults (25 – 35 years).
Being able to take a break is an important part of looking after yourself and your wellbeing. The term ‘break’ (also known as respite) is used to describe the time off that family carers (and people with a disability) can get. There are several options that can assist you with taking a break, these include:
Refer to page 21 of the Updated Carers Guide for more information on taking a break. You can also download a free copy of the Time Out respite planning guide from the Carers New Zealand website. This website also contains a range of respite and wellbeing resources.
Check out the information written by families on IF and IF respite.
Friends enrich our lives, boost our self-esteem, and provide the moral support we need. But what do you do if your child doesn’t make friends easily? This can be a particular concern for carers/family/whānau.
Where possible get them involved in extra-curricular activities, such as community groups, clubs or sports. This can be a great way of exploring a common interest which can led to friendship.
Sometimes as carers/family/whānau we will need to help our child learn how to interact with others, we can support this by:
accentuating the positive strengths of your child
getting the teacher involved – they can help by creating positive group experiences, providing your child with specific responsibilities, matching him or her up with a classroom or lunch time buddy (this may need to be strategic initially)
getting siblings and other family members involved
steering siblings towards games or projects that play to both siblings’ strengths (where needed allow time away from one another)
watching out that siblings don’t unintentionally take over the playdate!
visiting other family members or family friends where they feel comfortable and safe
creating family traditions like pizza or movie night that everyone can enjoy, this helps to create memories and a shared history
exploring on-line friendships – depending on the age of your child this could start with emailing or skyping other family members outside of the immediate home (ie, grandparents)
As a carer/family/whānau you may need to plan for playdates. This may require you to think strategically about how to make the playdate successful, for example:
think about how (and where) the playdate might work best and what might help to make it successful for everyone
if your child is anxious before a playdate talk them through what might happen, or create a social story and go over this several times
a short playdate can be a successful playdate!
coach your child about play and/or friendship (this might include greeting peers, sharing, turn taking, social cues, body language, personal space and communication)
start out with a one-on-one play date before involving others
talk to the other parent, if you are unsure, about possible shared interests or activities they could do together.
Recreation & Leisure
Recreation and leisure are fundamental activities in everyday life. They are typically the activities we choose to engage in because they align with our personal interests or hobbies. Get your child involved in local clubs or sporting activities that they show an interest in.
Ensuring your child is able to fully participate in these activities may be a challenge, this could be because of attitudes, access, or the modifications/support they might need to get the most out of the activity. There are organisation that have a No Exceptions policy. Check to see how clubs or groups can support your child to participate.
The Halberg Disability Sport Foundation supports children with a physical disability if they want to be involved in active leisure or recreation of their choice, alongside their peers in an inclusive environment.
The Trust has several programmes and funds to achieve their objectives, including:
Halberg AllSports is the Halberg Disability Sport Foundation’s community programme to enhance the lives of physically disabled young people by enabling them to participate in sport and recreation.
The Halberg Disability Sport Foundation has nine dedicated field staff to support the AllSports programme throughout New Zealand.
Halberg No Exceptions Training ‘Net” aims to increase the knowledge and skills of teachers and sport deliverers to give them the confidence and resources to deliver quality sporting opportunities to physically disabled people.
Activity Fund – funds grants for equipment or lessons.
In terms of finding out what’s out there – keep an eye out on what happens locally in your area and visit information directories where you can search regionally for groups and clubs. Sports New Zealand has a list of national organisations (ie, Girls Brigade, Scouts, etc) as well as a directory where you find a chosen sport and connect with a regional Sports Trust in your area.
See the last page of this resource for some of the national organisations that specifically support disabled youth into sport or leisure activities. You may also want to contact some of the national disability organisation as some groups do provide local opportunities (ie, Deaf Association, Blind Association, CCS Disability Action, etc).
Also check out local councils as some councils provide discounted leisure cards (ie, Wellington and Christchurch) for entry into accessible local activities.
Bullying & Cyber Safety
We know that children are more likely to be bullied when they are vulnerable in some way. Research suggests that disabled children are three times more likely than their peers to be bullied. It is understandable to feel anxious about bullying; however, it is important not to assume your child will be bullied but be prepared in case they are.
The Ministry of Education has some good information on bullying, including tips on supporting your child, the expectations of the school, and cyber bullying. For specific advice written for parents of disabled children who are experiencing bullying, check out Bullying UK. There is also good information on Youthline.
For information on cyberbullying, check out Netsafe which is an independent, not-for-profit New Zealand organisation focused on online safety and includes information for parents.
You may also be interested in the Ministry of Education’s Bullying Prevention and Response: A Guide to Schools. This resource is primarily designed for school principals, staff and Boards of Trustees. The guide includes links to resources that may also be useful for students and their families/whānau.
Self–Advocacy & Advocacy
Where possible, the young person should be encouraged to speak up for themselves, particularly as they move from childhood into adolescence. During this stage, the child is often trying to understand the world around them, find a sense of self, and begin to assert their own wants and needs. Ensure your young person can be heard, whether this is by ensuring they have the right communication tools/equipment or are given the space to get their point across.
People First New Zealand is a self-advocacy organisation that is led and directed by people with learning (intellectual) disability. They have a number of courses designed for people with learning disability, including:
Work and Your Rights in New Zealand
Money Smarts Made Easy
Keeping Safe Feeling Safe – this is a 10-part course about Bullying, Abuse and Neglect.
There are resources and training for people to keep safe in their community and with friends. One good resource is the Healthy Relationships programme provided by Kidpower Teenpower Fullpower New Zealand that is specifically designed for people with learning disabilities. This resource teaches people basic skills to first recognise potentially risky situations and, secondly, how to respond.
For some young people, they may want someone who can speak on their behalf and represent their interests. A person who speaks on their behalf in this way is often called an ‘advocate’. Advocates can help a young person express their point of view about issues that are important to them. The people who advocate during this stage are often family members, friends of the family, or other professionals that have a good relationship with the young person and/or their family/whānau.
In short – to advocate you will need to:
understand the ‘system’ or ‘rules’ – these are often not written but are about who you should speak to, how the system works and understanding how supports and funding works (ie, education)
plan and prepare – if you are going into a meeting make sure you are prepared
keep written records or notes of meetings and phone calls
ask questions and listen to answers
identify problems and propose solutions
plan for the future you and your child want.
Care Matters provides workshops for carers/family/whānau on a range of topics in local areas that can include topics such as ‘negotiating what you want’, ‘communication skills’, ‘reframing’ and ‘dealing with stress’. You can request a workshop in your area that Care Matters can tailor to a specific topic if you have nine participants or more (ie, education, transition, planning for the future, negotiating skills, etc). Contact Care Matters for information about courses in your area or tailored workshops on 0508 236 236.
As a carer/family/whānau there may be times when you need additional support to advocate on behalf of yourself and/or your family member.
There are several organisations that can support you:
The Health and Disability Commissioner (HDC) enforces the Health and Disability Consumers Code of Rights and provides an independent health and disability advocacy service. An advocate assists by listening to your complaint, giving you information about your rights and options for resolution, then supporting your option.
Community Law provides legal advice, legal assistance and representation, legal information, legal education and law reform activities. The website has free legal information, factsheets, guides and contact details for local community law centres throughout New Zealand.
YouthLaw Tino Rangatiratanga Taitamariki is a community law centre for children and young people nationwide. They provide free legal services to anyone aged under 25 who is unable to access legal help elsewhere, or those acting on their behalf.
IHC provides advocacy support for people with an intellectual disability in New Zealand. They can support you to advocate on behalf of a person with an intellectual disability or support people with intellectual disabilities to be self-advocates. Their advocacy toolkit provides lots of useful information for carers/families/whānau.
The purpose of the Human Rights Commission is to promote and protect the human rights of all people in Aotearoa New Zealand. They facilitate resolution of disputes about discrimination.
The Citizens Advice Bureau (CAB) provides information and advice and has services nationwide. Their website has some useful information on complaints and disputes.
The Disabled Persons Assembly (DPA) is an umbrella organisation representing people with disabilities. DPA provides information and advice. People First New Zealand is a self-advocacy organisation that is led and directed by people with learning (intellectual) disability. People First is part of an international movement fighting for the rights and inclusion of all people with learning disability.
CCS Disability Action is a nationwide organisation that provides support and advocacy for people with a disability. At the heart of their vision is a society where all people are included in the life of their community and family. They work with people of all ages and stages across Aotearoa, New Zealand.
This is subject that often causes alarm for any parent. Your child will grow up and go through puberty like any other young person. However, puberty may be early for some and delayed for others. As much as possible, your child will need to be prepared for the changes to their body before they take place.
Health Click produces resources for young people, those with disabilities and for their parents, educators, therapists and care givers. They have produced an EBook to help people with an intellectual or learning disability learn about relationships and health and hygiene.
Parenting can often be a rollercoaster of emotions and experiences. It can be hard to talk to others about how you feel, or what you are doing, as you may feel they just don’t ‘get it’.
There is a difference – parents of other children often say, ‘Oh, all children are fussy/obsessional/stubborn/lose things etc.’ Yes, all children do display these same characteristics but it’s about the degree to which they do it that makes the difference. This is often hard to explain.
it’s ok to ask for help
choose your battles
look after yourself
get all the help you can.
Check out the ‘Tips to stay on top of it all’ and ‘Tips for Time Out’ written by families for families.
There are a lot of organisation that can provide generic parenting support and advice, such as:
Parent Help – takes you through various ages and stages and provides general parenting strategies.
Kiwi Families – provides one of New Zealand’s largest and most comprehensive free information websites for NZ parents.
Youthline – provides support for parents that includes an email service that connects parents with trained youth counsellors and a range of online information sheets for parents.
Organisations that provide parenting programmes include:
The Incredible Years parent programme is for children aged 3 – 8 who may be experiencing behaviour difficulties. Contact your local Learning Support office through the Ministry of Education if you’re interested.
Kiwi Families on the Parenting Place programmes (formerly Parents Inc).
Family Works is a national organisation providing social work, counselling and support for children, adolescents and their families as well as parenting programmes.
Altogether Autism – specific parenting programmes (includes Stepping Stones Triple P (Positive Parenting Programme).
Siblings may also want to talk to other siblings who have similar life experiences. You may be able to do this by connecting to local support groups. Parent to Parent offers SibDays which are one-day events for 8 –18 year olds. These occur throughout New Zealand and provide siblings with an opportunity for discussion, sharing, games and activities.
Taking Care of yourself
Often the wellbeing of carers/family/whānau are overlooked as they care for the needs of their child. Be aware that there are times that increase stress for a parent, these are typically:
at the time of diagnosis
at transition points, for example, starting and leaving school
when young adulthood is reached.
If you or your child are struggling with mental health or depression, there are organisation that can provide you with support, information and advice, such as:
The Lowdown is part of a national public health campaign (the National Depression Initiative) and has been created to reduce the impact of depression on the lives of New Zealanders, as well as being a component of the New Zealand Government’s approach to suicide prevention.
Webhealth is your connection to local health and social services, mental health and general health information. In some regions, you can access a specific Mental Health & Addictions Training Calendar.
Beyondblue is a national, independent, not-for-profit organisation working to address issues associated with depression, anxiety and related substance misuse disorders in Australia.
0800 What’s Up is a helpline for kids, teens and adults which provides a safe place to talk about anything.
This website helps New Zealanders recognise and understand depression and anxiety and has a helpline 0800 111 757 or text 4202.
Challenging Behaviour – where to go?
If someone you care about or support is showing signs of challenging behaviour, Explore Specialist Advice can help. The Ministry of Education also provides behaviour services and support including an intensive wraparound service. The New Zealand Government provides some information on where to go to get support for children with behaviour problems.
BeChange provides parenting workshops on a variety of subjects, including challenging behaviour. They currently provide services in Whangarei, Hamilton, Tauranga, Palmerston North, Wellington and Auckland but can provide services in other parts of the country. Other topics include:
Achilles International New Zealand provides New Zealanders with disabilities the opportunity to participate alongside able-bodied athletes in local mainstream events like Cigna Round the Bays, Taupo Half Marathon, the Auckland, Christchurch and Wellington Marathons (and more), as well as the high-profile international New York Marathon.
Beachwheels is the supplier of beach and all terrain wheelchairs. The Beach wheel chair is specifically designed to go where no normal wheelchair can. Soft sand, mud, gravel and uneven terrain are now easily accessed with this revolutionary chair.
The mission of the Duke of Edinburgh’s Hillary Award programme in New Zealand is to have young people, regardless of cultural, ethnic and socio-economic background, participating in an exciting, flexible and individually-tailored programme, to build skills, identity and self-esteem.
Paralympics New Zealand supports and encourages opportunities for disabled people to participate in sports, at regional, national and international levels. Sports are offered through a network of Regional Parafed Associations and other groups.
Recreate NZ runs over 250 programmes each year in Auckland, Christchurch and Waikato and caters to youth who have mild to moderate intellectual disabilities. We have three different age categories from juniors (10 – 15 years), to youth (15 – 25 years) through to young adults (25 – 35 years).