Advice and information for those caring for a disabled family/whānau member
The intent of this document is to provide you with information about key services and tips from other families/whānau to assist you with navigating the middle years. This is part two of four resources (The Early Years, The Middle Years, Adulthood and Getting Older).
The disability support system is going through a time of major change. This resource relates to how things are at the moment. It is important to note some systems may differ, now or in the near future, in the following regions: MidCentral, Waikato and Christchurch. At some point this system change will occur in all regions throughout New Zealand.
Care Matters support the Enabling Good Lives (EGL) vision and principles that are the foundation for the current system transformation. One of the EGL principles is ‘mainstream first’. Care Matters promotes families being able to successfully access all universal supports and services. Another EGL principle is ‘self-determination’. Care Matters also supports the right for families to have full information so they can make informed choices regarding all options – including specialist supports and services.
Before and after school care and holiday programmes
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. In New Zealand, children under the age of 14 must not be left alone without reasonable care and supervision.
You can search the Ministry of Social Developments family services directory for specific childcare or holiday programmes in your area. You can also narrow the search to those who provide specific services for disabled children and youth. 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.
Child care assistance
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.
Recreate New Zealand 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).
Refer to the appendix at the back of this booklet for national organisations that support recreation & leisure activities.
Getting a break
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 often provide the moral support we need when times are difficult. But what do you do if your child doesn’t make friends easily? This can be a concern for parents, worrying about how their child is doing with their social interactions and friendships. We quiz our children (and teachers) about their social interactions because we know that for many children having friends is a big part of making life fun and enjoyable.
If possible, get them involved in extra-curricular activities (that they enjoy) such as community groups, clubs or sports. This can be a great way of exploring a common interest which can led to friendship. For some children they may not (and you may not) be sure about what groups or clubs might suit them. See if you can visit and check them out before committing. If you are considering team sports, groups or clubs in your community, refer to the Appendix at the back of this resource on Recreation & Leisure.
There may be specific skills a child needs to learn so that they can more easily interact with others. If the child is at school, get 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). Outside of the school we can support this by:
accentuating the positive strengths of your child
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 online 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)
finding groups they feel comfortable with – this may include activities or camps organised by groups that support disabled children and youth.
As the 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.
We learn about ourselves through different relationships with others, these relationships can:
build our self-esteem
provide opportunities to explore the world around us
help us learn to negotiate and compromise
help us to learn to be kind and caring
teach us to be assertive when we need to be
help us to get clear about what we like and don’t like about other people and activities.
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 organisations 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 to be involved in active leisure or recreation of their choice, alongside their peers in an inclusive environment. The Halberg Trust helps to achieve this aim through:
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. There are 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 can find a particular sport and connect with a regional Sports Trust in your area.
You may also want to contact some of the national providers as some organisations do provide local, regional or national activities (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 a 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:
have a clear understanding of what the person you are advocating/representing wants
encourage the person to take part in all discussions to the level they are comfortable with
understand the ‘system’ or ‘rules’ – these are often not written anywhere but require you to have an understanding of who you should speak to, how the system/funding/disability supports and services work, and how to communicate the individuals and/or families point of view, etc.
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, propose solutions and plan for the future the young person wants.
Care Matters provides tailored workshops for carers/family/whānau on a range of topics throughout New Zealand. You can request a workshop in your area on a topic of your choice (ie, system transformation, what’s available in your community, funding, communication skills & dealing with conflict, transition, planning for the future, managing stress, …etc). Contact Care Matters for information about courses or tailored workshops on 0508 236 236, call/text 027 414 5267 or email email@example.com.
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, this includes supporting people with an intellectual disability 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 a subject that often causes alarm for any parent. And sometimes for the young adult. It can be a confusing and frustrating time, particularly if you do not understand the changes that are happening to your body. Try to explain the changes happening to your young person in straight forward language and pick the right time to do this.
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.
Your young adult may also want to think about and discuss sexual feelings or sexual relationships. You may feel comfortable to have this conversation, or you may decide that a sibling, peer or health professional is the right person to discuss this subject. Whoever the person is they need to be able to explain clearly all aspect of sexual health and relationships.
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.
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 New Zealand 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.
You can contact the Depression helpline which operates 24/7 or you can text 4202. Their website helps New Zealanders recognise and understand depression and anxiety and has lots of useful online tools.
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:
At 16, the young adult will have their last ORS review and then funding does not change until the end of school. Be aware of any changes made to funding at this stage.
Students can exit school from the age of 16 – with many students with learning needs staying at school until 18. An ORS funded student can stay at school until they are 21; however, most students leave before 21.
An Individual Transition Plan (ITP), which is also referred to as a Career Plan, sits alongside your child’s Individual Education Plan (IEP) by the time they’re 14. These plans focus on what your young adult wants to do after they leave school and the steps and support they need to get there. The school has a responsibility to ensure the curriculum reflects the ITP goals.
It’s important the student starts to explore the options available for them as early as possible. The school can add activities into the classroom programme that will set your son or daughter up for life outside of school.
The ITP may look at a variety of topics, such as:
Life Skills (ie, travelling independently, budgeting, independent living skills, etc)
Work Experience and Employment options
Community Involvement (ie, community involvement, recreation and leisure)
Gateway & Star Programmes.
Get the school’s career advisor involved as soon as a Transition Plan is being developed. They can provide advice on subject choices. Careers New Zealand has useful information to help your son or daughter work out their subject choices.
It’s extremely important that the young adult has some idea about what they want their life to look like after school and what they need to do to achieve that. This will help them set goals and break down the steps to achieve those goals.
Teacher Aide as a Job Coach
You can be creative with the resources you have available – the Teacher Aide can be used as a Job Coach. If the Teacher Aide is used in this way, ensure they have the skills to be able to provide this support. For example, they can work with your son or daughter to develop visual schedules for work tasks, social skills, work ethics for the workplace and ways to develop independence.
Life Skills Programmes
Most Life Skills Programmes start at the age of 16, check out if the school your son or daughter will be attending has a Life Skills Programme and what they can offer? Programmes are tailored to the individual and their IEP goals or career goals. Such topics can include money handling, meal preparation, cooking, managing household activities, travelling independently and so forth.
If the school you attend does not have a Life Skills Programme, you may be able to transfer to another programme in your area.
Supported Living Payment (SLP)
The student is eligible for a Supported Living Payment (SLP) from age 16 from Work and Income. SLP is assistance for people who have, or are caring for, someone with a health condition, injury or disability.
Work and Income can provide you with information on the child disability allowance and the disability allowance. If a child is not receiving a benefit (except the Orphan’s or the Unsupported Child’s Benefit) you may be able to get the child disability allowance and the disability allowance for the same child.
For some people, they will need to appoint an agent. It is useful to know that each person can have two agents. An agent is a person who may act on their behalf. For example, to apply for financial assistance, update personal details or receive mail.
In order to get income support, you will need an IRD number. Contact the Inland Revenue Department to get an IRD number on 0800 775 247.
Ministry of Development (MSD) funded Transition Service
Another option in a student’s final year of school (for ORS funded students) is a MSD funded Transition Service. This service focusses on the uninterrupted movement of students in their last year of school into post-school education, employment and/or community services and activities. The purpose of this service is to ensure there is a co-ordinated plan in place to assist the student to achieve his or her post-school goals.
The criteria for students applying for the MSD funded Transition Programme are:
must have current High or Very High Needs ORS funding
must be in their last year of school or tertiary education
must be aged between 16 – 21 years of age.
MSD funded Transition Programme details:
services are for 1 year whilst the student remains at school
enrolments begin in the last half of the school year, before the student’s final year.
If you want to find out about Transition Services in your area, contact a MSD Contracts Advisor and discuss this option with them.
NB: Some trusts do work with students who do not have High or Very High Needs ORS funding; however, this is usually dependent on funding from other philanthropic trusts.
Preparing to leave secondary school …
Refer to the Ministry of Educations ‘Preparing to Leave School’ for more information about the support available for moving into tertiary education, employment, and living in the community.
Three What’s Next resource booklets have been put together to provide information on Transition options for the Waikato, Central and Wellington regions. Although the contacts in each booklet are regional, there is plenty of generic Transition information that you may find useful even if you live outside of these areas.
Funding for Students with High ORS verification post-schooling
High ORS funding for students ceases when they transition from school. Funding for these young people is provided through a number of MSD contracts depending upon post-school pathways.
Funding for Students with Very High ORS verification post-schooling
Students who have Very High ORS verification may qualify for individual funding from the Ministry of Social Development (MSD) when they leave school through a contracted service. MSD will contact you directly about this.
There are no integrated services post-school and your son or daughter may be involved with several different services/organisations.
Most services will want to do some sort of plan – ‘career plan’, ‘personal plan’, ‘individualised plan’, ‘strengths plan’ etc. You can ask the ‘key’ organisation to invite other services to one planning meeting. This can also assist with using resources effectively across services. This could be organised by the young adult, key service or carer/family/whā
For example, when creating a ‘career plan’ your family member may also want their home support provider/residential provider at the same meeting. Even if these two services are part of the same organisation, having the different staff people responsible for work and home together in the same room is critical.
Be aware – not all organisations work in this way.
Appendix – Organisations that support recreation & leisure activities
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 wheelchair 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).