Information for carers/family/whānau caring for a disabled family member
The intent of this document is to provide you with some information about key services that can assist your young adult into adulthood. This is the third 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 (19+), and
As discussed in Part Two, it is important the young adult is encouraged to speak for themselves. This can be a challenging time, as the young person begins to let their preferences be known, particularly if this differs from those of the parent or carer.
For some young people, they may always need some support to make decisions or help to achieve their goals. As parents, we have to learn when to step in and when to step back.
Having the right communication tool or communication aid is vitally important. Communication tools can be as simple as using pictures to elicit a yes or no response, using NZSL (New Zealand Sign Language), or technological aids/computers/apps that assist the person to communicate. Organisations like TalkLink can help find the right assistive technology or aid for your young person.
Supporting the person in making decisions has several key elements:
Having the right communication tool and ensuring information is presented in a way that is understandable to the person.
Ensuring the person is able to make an ‘informed decision’ – that is they have all the information they need to make the decision.
Being able to explore options while ensuring personal safety – ‘safety’ for one person will mean something entirely different for someone else. There are no set rules, the young person has the right to explore options and make their own decisions. The exception to this is if there were concerns that a decision could lead to serious risk of injury or harm to themselves or others.
Letting the person learn for themselves – sometimes things don’t work out, but that’s ok too.
For some young people, they may have had very little opportunity to make decisions. Where people are anxious or hesitant about making decisions … go at the person’s pace and initially build on steps that lead to successful results. Building self-esteem can be an important building block in decision making.
IHC Advocacy run free Supported Decision Making courses around the country. If you’re interested, call IHC Advocacy toll free on 0800 442 442, or email: email@example.com. People First can also help people explore their rights and they have plain language resources on this topic.
(refer to preparing to leave school in Part Two of the Time Line)
Hopefully by the time your young adult leaves school they will have a clear idea of what they want to do – be it employment, tertiary education or involvement in community activities.
People First has some good resources for people with an intellectual disability that might be helpful including ‘Work and Your Rights in New Zealand’, ‘A job just like anybody else’, and ‘With support I can’.
As discussed in Part Two, you can use the Life Skill or Transition programme at school to assist you with getting some of the skills you might need once you finish school. You may be able to access opportunities for work experience or voluntary work through these programmes.
It may be possible to get part-time paid employment after school, on weekends or even during school hours – if this is supported by the school. Discuss possible options with the school as early as you can.
If you want advice about the type of jobs that might suit you, you can speak to people who can provide employment advice at Careers New Zealand on 0800 222 733.
There are many mainstream employment agencies throughout New Zealand, as well as a number of agencies that have been set up specifically to support disabled people find employment.
Workbridge is a national specialist employment service that gives employers access to a wide pool of potential employees (who have a disability, injury or illness). Work and Income provides employment services and financial assistance throughout New Zealand. There are also supported employment agencies that provide a variety of employment related support (refer below).
The sort of things these funds can assist job seekers and employees with include:
support to learn the job
support to up-skill while in a job
assistance to cover disability related costs (transport, equipment, workplace modifications and interpreter services)
job coaching, and
Support funds can be used at the same time as any other funding except Mainstream funding (see below). Job Support funding is limited to $16,900 per person over a 52-week period and Training Support funding has a lifetime limit of $15,600.
Work and Income can also assist you with writing a CV, finding employment and with associated financial assistance. They can refer you to organisations, like Dress for Success, who can provide women with a professional outfit for a job interview – free of charge.
You may want to discuss ‘benefit abatement’ with Work and Income (or with the other specialist employment services involved). Benefit abatement refers to how the benefit will be affected once someone starts earning an income. You may also want to discuss what the ‘stand down’ period would be should a job suddenly fall over. Working together with all those involved can ensure a smoother process should circumstances change suddenly.
There is no guarantee that you will access Training or Employment Support funding – sometimes funding is capped because of demand.
Supported employment agencies, Workbridge and Work and Income can work with potential employers and offer support to both the person and the employer.
The maximum amount of funding you can receive from one or a combination of sources – Job Support, Training Support or any other funding from the Ministry of Social Development or Work and Income – over a 52-week period is $16,900.
Supported employment agencies do not administer any of these funding schemes but they can provide impartial advice on the application process.
Both the Job Support fund and the Flexi-wage can be used for people who are self-employed.
Supported employment agencies provide specialist employment support services. You can use the New Zealand Disability Support Network (NZDSN) database of disability support services to find an agency near you. They can typically help you with:
finding a job
writing a CV
learning the job and job coaching (if needed)
on-going job support
awareness training, and
helping you make applications for support funds administered by organisations like Workbridge or Work and Income.
The young adult may also be eligible for the Mainstream Employment Programme (funded by the Ministry of Social Development). The Mainstream Employment Programme provides a package of subsidies, training, and support to help people with significant disabilities to gain sustainable employment.
The programme provides:
a 100% salary subsidy for the first half of an agreed term of up to 2 years, and an 80% salary subsidy for the second half
funding for agreed external training, specialised equipment or other assistance for the participant
ongoing support for participants and their supervisors.
Any of the specialist employment services can support you with your Mainstream application or you can approach the Mainstream Employment Programme direct.
Prior to leaving school, it can be a good idea to talk to the school’s career advisor and start thinking about post-school options.
Every tertiary institution, such as a polytechnic or university, has a Disability Advisor or Coordinator and they will be able to tell you about the different ways the tertiary provider can support the young adult.
If you require information on student loans and allowances, you can call Studylink on 0800 88 99 00.
If the young adult receives a Supported Living Payment (SLP), they can apply for the Training Incentive Allowance through Work and Income. This allowance can help pay for course fees and text books. Workbridge administers the Training Support funding (as mentioned above).
Literacy Aotearoa can help the young adult with reading, writing, maths and is committed to providing person-centered learning, at no direct cost to the learner. Call them on 0800 678 910 to find out about the services they provide.
Vocational services are funded by MSD or MOH (if the person has a health need) and are typically free. Vocational services often provide a mix of:
in-house programmes (ie, cooking, music, life skills, creative activities) and
services and supports based on the person’s preferences (as identified through their personal plan).
Ideally you would have been directed to the right service as part of your Transition programme towards the end of your schooling. Check out the NZDSN member network (as mentioned above) and you will be able to find local providers in your area.
Most services are free if funded by MOH or MSD, however, there are some services which operate as a fee for service, so check out if there is a cost involved. Most services run Monday to Friday from 9am – 3pm and you can attend half or full days, one day to five days a week.
Typically, each person will complete a personal plan – this plan is meant to help the organisation understand a person’s preferences and direct resources (supports and services) so the person can achieve his or her identified goals.
Most services will inform families about these plans, but not always. This will depend on the type of relationship they build with families. As your young adult is now considered an adult, they will typically be asked about who they want involved in their personal plan. If you’re not invited, you can question this, particularly where you input would have significant benefit for the person and staff. Make sure the organisation communicates clearly about when these meetings take place. It’s important that everyone supporting the individual is part of these meetings.
It’s OK to take a step back. Decide how much involvement you want to have.For some families being able to take a step back and be Mum or Dad again (rather than the support person) is a sought-after goal. This can only happen when reciprocal and trusting relationships are built between the family and the service.
Some services might be able to support the person to set up what is known as a ‘micro business’ or ‘micro enterprise’. This is a small business where the person is self-employed. For example, making dog biscuits and selling them at local markets and to other community members. Finding ways for people to earn even a small amount of additional income can make a huge difference to their everyday life.
Be aware that there are often additional costs for some activities.
Adult services are NOT integrated – you may have to work with several services who do not typcially work together (this includes services provided under the DHB).
If you’re working with multiple services, it can be a good idea to have everyone at one planning meeting – rather than several meetings – as this assists with coordinated care and support.
You can attend more than one vocational service. Find out what’s on offer – you can mix things up depending on what’s on offer and the person’s interests and hobbies.
Most services are not funded to provide 1:1 support.
Most activities will happen in groups or each person may be allocated a small amount of 1:1 time. Find out how much 1:1 time the person will have and what their staff ratio is (ie, 1:1 is direct person to person support; 1:7 is one staff person to 7 people).
There are some organisations that provide a 1:1 service and you may want to find out who they are.
Talking with other parents can be a good way to find out about the services available in your local area.
What happens if there are no vocational services in your area?
The reality might be that in some areas (ie, rural) there will be no vocational service or little choice in the local area. There may be reasons why you are unable to use the service that is available. This may mean that the carer/family/whānau continues to provide the majority of support the young adult needs. It may be possible to look at moving your family member to a service in another town. However, moving away from family and friends is not always ideal.
Speak to your local NASC to explore options, for example, Individualised Funding (IF) is available throughout New Zealand for eligible people who have either a Home and Community Support Service or Respite allocation.
It may still mean that support is provided from your home, however, IF gives you increased choice and control to choose who provides the support, and how and when you use it. Your options range from engaging support workers and planning how your supports will be used to employing your own care providers and managing all aspects of service delivery.
The Young Adults Guide to Flatting was put together by parents and includes several personal stories and useful information for those thinking of leaving home. Each of the people in this resource have their paid support needs met by Individualised Funding and the guide outlines what they did and how this worked for them.
Community Involvement, Recreation & Leisure
In many cases, people may do a variety of things – spend time with friends and family, paid or voluntary work (this could be as little as a few hours a week), study, attend a vocational service or get involved in sports or other activities in the local community.
In Part Two, recreation and leisure activities are discussed and you can find an appendix for ‘organisations that support recreation & leisure activities’ at the end of that booklet.
The Electoral Commission has information on voting. Towards the bottom of that page there are two videos – one about voting in NZSL and the other about voting for those with a learning disability called ‘We’ve Got a Voice’.
Moving away from home
Ideally the young adult would have a planned approach for leaving home. What someone thinks moving away from home will be like and what it actually is like may be two very different things. Moving away from family is a big step for any young person (and those who care for them). The best time to leave home is when they:
have support to move out
have a plan.
If the young adult is planning to leave home at some point, the Transition or Life Skills programme at your school should be able to offer support to learn various skills such as cooking, budgeting, catching public transport and so forth.
There are a range of support and accommodation options available (Home and Community Support Services, Supported Accommodation and Residential Accommodation), however, if you want to explore these options and the funding available you will need to contact the local NASC.
The young adult will need to think about what they want and the type of accommodation and support options that would best suit them.
What you need to think about?
Different Support Arrangements
Financial Support for accommodation related costs
If they want to live on their own or with others?
You can find rental accommodation through private landlords, Community Housing providers (MSD) and your local council.
Home and Community Support Services provided in the home (ie, household management and personal care).
Support may or may not be provided by a provider (ie, people may manage their own budgets and employ their own staff).
which provides a rates subsidy for low income earners.
The cost of buying or renting a home and the bills associated with renting/owning a home?
Support provided by staff attached to Supported Accommodation providers.
Support will vary depending on need and the person may be actively involved in things like hiring their own staff, etc.
Income Related Rent (IRR) is a rent that is subsidised by the government (and administered by MSD) to make accommodation more affordable for those on low incomes, refer to the IRR guide on the Care Matters resources page.
What support they might need, ie, budgeting, etc?
Support provided by staff attached to Residential Accommodation.
Up to 24 hour staff support. Tenancy agreements may be with the property arm of the same organisation that provides the support – although other rental agreements may be possible.
Check out the various house modification grants available:
Some families work together with other like-minded families in providing accommodation support for their family members.
Circle of Support – where typically non-paid people come together to support the person.
There are a number of services that can assist with budgeting advice (see below)
If you have an emergency housing need, you can call MSD on 0800 559 009 who may be able to help and refer you to local services.
There are several non-profit organisations that can help you with budgeting advice. You can contact the Citizens Advice Bureau to help find a budgeting service that suits your situation. They also offer a free budget advisory service in some centers. Call 0800 367 222 or visit http://www.cab.org.nz/.
Health Click produces resources for young people, those with disabilities and for their parents, educators, counsellors and care givers. They have produced an EBook to help people with an intellectual or learning disability learn about relationships, health and hygiene.
They also have a CD Rom called Sex Smart which is an interactive CD ROM that provides a comprehensive look at sexual health, contraception, STIs and relationships for adolescents that educates and supports young people – helping them to live safer, healthier and happier lives.
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.
Both CCS Disability Action and IDEA Services have extensive libraries and their whānau coordinators may also be able to give you information that might be useful.
If you or your family member want to speak with someone who is not related or a close friend, you can contact Family Planning for information and advice or Relationship Aotearoa on 0800 735 283.
Relationships Aotearoa has expertise in a range of areas including couples counselling, individual and family therapy, working with violence and abuse, and youth at risk, etc. They offer a range of courses including relationship-building skills for young people, anger management and conflict resolution, and self-esteem as well as courses such as their Parenting Through Separation programme.
Work and Income through the Disability Allowance can subsidise counselling and pay for transport to and from counselling. You will need to fill out the following form and get a GP’s signature. For information on how this works, click here.
Grief and Loss
As our children grown they may experience grief and loss, this could be the loss of a parent or the death of their own peers as they grow older.
The feelings of grief can happen for lots of reasons such as when someone dies, gets sick or injured, as well as through significant life changes such as when a close friend moves away, carers leave, they stop work or a pet dies. Grief is a feeling of deep sadness that can last for many months after the loss of someone or something they love.
Grief affects people differently. It can make people feel:
like crying a lot
angry, numb or shocked
like they are not themselves
like their world is tumbling down.
It’s important each person is supported to grieve. Mourning is a natural process one goes through to accept a major loss. Some people may want to stay at home and not go out and do the things they normally do. They may not feel like eating and they may sleep more or sleep less. There can be behavior changes as people work through grief.
You can find general information onKidsHealth about bereavement reactions by age groups. Elizabeth Kubler-Ross talks about the five stages of grief that people go through – although not necessarily in this order.
Each person’s experience is unique
Denial (“This is not happening to me”)
Anger (“How could she leave me like that? I hate her!”)
Bargaining (“I’ll be a better daughter/son if….”)
Depression (“I don’t feel like doing anything or seeing anyone.”)
Acceptance (“I have to get on with my life.”)
It can help to talk about those feelings to people you trust and do things that give you comfort. If the person keeps feeling sad or angry, they may need some extra help. It’s is ok to ask for help. Provide assurance that the person is not alone and that there are others than can help.
Skylight is a national not-for-profit trust that enables children, young people, their families/whānau, and friends to navigate through times of trauma, loss, and grief. Skylight’s Resource and Information Centre can tailor support information for specific situations and post a pack to you anywhere in New Zealand (a koha is requested to help Skylight cover the costs of this unique service).
Skylight has lots of resources available including their About Grief page which provide free fact sheets on:
Coping with Holidays and Special Days
When You’re Grieving
What is Grief Anyway?
Grief is Like … ?
When Men Grieve
Writing Your Way Through – Keeping a Journal Through Tough Times.
The Grief Centre provides support, advice and counselling to help those affected by loss and grief. They offer a variety of services, including counselling, support groups, community talks, information and resources and books for sale to assist those that are grieving.
When a young person turns eighteen, they become legally responsible for their own decisions. There are some great information/resources on Supported Decision Making, such as:
People First – Supported Decision Making tools and easy read leaflet
not to get in the way too much with the person’s life, and
to let the person, use and develop whatever capacity they do have, as much as possible.
The Family Court can give you information on the Act but can’t provide you with legal advice. If you need legal services, YouthLaw or Community Law may be able to assist you or point you in the right direction.
Family Trusts, Property Managers and Welfare Guardianship
The Ministry of Justice provides information on ‘what a Welfare Guardian does’ and how to ‘apply for Welfare Guardianship’.
Family/whānau/carers can apply to the Courts to have a Welfare Guardian appointed, but they must prove the person requires a Guardian and that the person nominated is suitable.
A Welfare Guardian is a person appointed by the Family Court to look after the welfare of a person who is unable to do this for themselves. These are decisions that only relate to health, care and living. A Welfare Guardian does not control any money or property, which must be done through a separate Property Order.