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 in planning for your family member’s future. This is the fourth resource, in a four-part series that includes The Early Years, The Middle Years, Adulthood and Getting Older.
A Time of Change
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.
Planning for the future can take place at any age but has a specific focus as one gets older. A plan may be created by the person themselves or by family members wanting to know that their loved one will be well supported as they themselves grow older.
Talking about and being well prepared for retirement, old age and changing living arrangements or health needs can make these changes less stressful when they happen. It’s important the individual and their support network/s start to have these conversations early enough so that a plan is in place long before the major life change, event or transition occurs. This can help alleviate some of the anxiety people may feel by discussing options and voicing concerns.
Planning helps to put things in place to ensure that the person has the best possible future, even in the event of the death of a parent.
If the person lives in your home, you will both need to think about what type of living arrangement you might want should they no longer be able to remain living with you. Thinking about ‘moving away from home’ is explored in Part Three of this series. You will need to start these conversations well before the actual need arises. Moving away from home for someone who is older and who has always lived at home is a huge life change. There are many steps prior to the move that will need to happen to ensure an easy and happy transition.
The person may have clear views on what they want or they may need support to assist them with decision making (referred to as supported decision making). If this is the case, think about:
Who should support them?
What communication method is needed?
How you might break the topic down so that it is understandable?
When you are creating a plan, everyone involved needs to be in agreement. Assumptions can be made within families, and these assumptions may not be the same for every member of the family/whānau. For example, what (if any) ongoing support will other siblings provide?
For some parents, they are reluctant to involve their other children – preferring that they ‘have their own life’ or feeling strongly that ‘it’s not their responsibility’. However, any discussion of this nature should provide the opportunity to involve all family members as they will have their own feelings about what should or should not happen and how they want to be involved.
The ‘Thinking Ahead: a planning guide for families’ was developed for families who have family members with a learning disability in the United Kingdom. Much of the material in the guide is generic and can be used in a New Zealand setting (apart from the fact the organisations mentioned are based in the United Kingdom). The link to this website and other resources that help discuss this topic have been added to the appendix at the back of this booklet.
Advance Care Planning (what matters to you?)
This is probably one of the most difficult subjects to discuss with your family member or loved one – “what will happen should I/we become unwell or pass away”?Something most of us don’t want to think about. However, we know that for all those involved, not speaking about this subject and waiting until a crisis happens, is far worse.
“Some people with learning disabilities have told us they would like to know that other people will be around for them when their parents pass away, to make sure they have a good life and are safe and well” (Thinking Ahead: a planning guide for families).
Primarily, advance care planning helps people understand what the future might hold and say what treatment they would and would not want. It helps people, their families and their healthcare teams plan for the future and for their end of life care. Secondarily, it is intended to make it easier for families and healthcare providers to know what the person would want if they become unable to speak for themselves (NZ Advance Care Planning Co-operative, 2015).
The Donald Beasley Institute also conducted a research project on MAKING THE FINAL DECISIONS: Factors contributing to a positive experience of advance care planning for people with intellectual disabilities and life limiting conditions (you can download this as a full report, easy read version or summary).
Te Hokinga ā Wairua End of Life Service is a joint initiative between partner agencies and NGOs responsible for services associated with end of life (ie, Department of Internal Affairs, Ministry of Social Development, Inland Revenue, Ministry of Health, Ministry of Justice and ACC). They also provide a range of information on:
creating a plan
financial and legal
organising your affairs
final resting place and
There are several commercial products available that encourage people to contribute regularly towards the cost of their funeral.
Building & Maintaining Friendships
If your loved one has a limited network of friends, think about ways this could be increased. The more people involved in their life the less vulnerable they will be. Often people living in residential homes will develop strong ties to support staff. They may spend more time with them than with any other person in their life. It’s important that the person has friends outside of paid staff. Some ideas that can help build or develop friendships (which family and staff can support) include:
remembering family members/friend’s birthdays and sending cards or gifts
inviting friends over for morning/afternoon tea
organising to meet with someone outside of the home (ie, movies)
use social media and other technology to keep in touch with others who may not live locally
join other local community or sporting groups
keep in contact with school friends even if they are no longer local.
Circle of Support
A Circle of Support or Circle of Friends can be used to support an individual’s personal goals. Typically, members are unpaid and are people who care about and have the best interest of the person at the heart of the process.
The person themselves or family members or friends may decide to create a circle of support. However a circle is created, the person is always at the centre and is either the decision maker or they may use supported decision-making (whereby disabled people choose people they know and trust to be part of a support network to help with decision-making).
One of the reasons families create a ‘Circle of Support’ is because they want people to come to together (who are intentionally invited for a particular purpose) who will support and protect the person’s interest now and into the future.
A Circle of Support can be created for a variety of reasons, such as:
developing friendships or connecting with the community (expanding a person’s social networks or circle),
changing living arrangement, and
planning for the future, etc.
Having a number of different relationships (outside of paid support) is one way
If you are unsure about what friendships or connections someone has you might want to create a ‘relationship map’. This starts with the person at the centre and then looks at where connections lie in different areas of their life, such as who are:
the most important people in their life?
their family and friends?
the people they are involved with, ie, students, colleagues or club members, and
the people paid to provide a service like hairdressers, support staff, teachers, etc.
For people with more high and complex needs, the map is often made up entirely of family and paid support. If this is the case, additional connections may need to be made. If they are part of a residential or vocational service, this can be added as a personal goal in their personal plan.
Ill-health & Aging
In New Zealand, we have a growing older population and this includes disabled people, who with the help of improved medical care live longer, often outliving their parents.
In the general population, the 65+ age group is expected to more than double by 2051, when they will make up one-quarter or more of all New Zealand residents (Statistics New Zealand, 2007, p.1). It is estimated that 54% of people aged 65 and over have a disability (2001 Disability Survey, Statistics New Zealand, 2004). As our population ages, Future Planning and Advance Care Planning (end of life) will be something that many New Zealand families will need to be talking about.
You will need to have honest and open conversations about ‘Getting Older’. This is a transition – just like changing from a child to a young adult. They may need to think about:
ongoing health needs
loss of agility
physical changes (menopause)
loss of energy or memory.
Early onset of dementia may affect people with a learning disability at a younger age than the general population. It can be helpful to have health professionals do a ‘baseline assessment’ while the person is young and healthy so that you can keep an eye on deteriorating health. They will need to continue to have regular health checks with their GP.
In 2008, 40,746 people in New Zealand had dementia, by 2026 this figure is expected to almost double. Demand for dementia care is steadily increasing with an extra 250 dementia beds needed every year (Grant Thornton New Zealand, 2010, p.91). By 2050, an estimated 146,699 people will be living with dementia.
Your family member may witness deteriorating health in one or more parents or carers. It’s very important to talk about these changes as it can be distressing to witness, particularly if the change in health is not explained.
You could also create a personalised social story that could explain what might happen. A social story is something you can go through numerous times with your family member. Talklink also has some information on creating a social story.
Aged Care Services
Many of the residential accommodation providers will continue to support the person in their home for as long as they want. Talk to them about what supports they offer as your family member ages.
Most of these homes have support staff who are not trained nurses, so there may be a time when nursing care or palliative care is required. Again, talk about what the transition process is should these additional services be needed.
If a person moves into an aged care facility or rest home, you will need to check out what services and supports they provide. There are a large number of providers and you will need to do your research into which one provides the type and quality of care required. You will also want to find out what checks and balances they have in place to ensure your family member:
can make his or her own decisions (ie, choose the time he or she wants to go to bed)
remain safe and well cared for
has a stimulating environment and the ability to pursue his or her interests, and
has the appropriate medical care they need (particularly if they are unable to articulate their needs for themselves).
You may also what to check:
Are there other costs not covered by the residential care subsidy?
How does this subsidy transfer from one provider to another?
What feedback or evaluation processes do they have in place to monitor quality of care?
How is feedback gathered from the people using the service and their family/whānau? Are the findings publicly available?
The Ministry of Health has information on residential care, rest home providers, eligibility for services and what the residential care subsidy does and does not cover. If you are moving from home to a rest home, you will need to go through your local Needs Assessment & Service Coordination (NASC) service. If your family member is a patient in a public hospital, they may be able to be assessed by a specialist while in hospital.
If the person is transferring to a different provider “where they will receive the same service type/level of care, a Change of Client Details/Residential Care Transfer (CD1103) form should be used. This form replaces the need for a complete re-assessment” (Residential Payments – A guide for Administrators of residential facilities).
New Zealand doesn’t have an official retirement age. However, for many people and providers 65 years of age is the target. You can access Ministry of Social Development funded day services up until you turn 65 years of age, after that many providers transition you into a service specific for the ‘over 65’s’. Some will have day services specifically operating for this age group, others will provide services and support from the person’s home.
If the person has been in a vocational or day service for many years and is no longer able to attend that service, you will need to talk about this with your family member. This may be a difficult change for your family member. Again, you will need to think about how best to ensure a smooth transition well before this change happens.
Grief and Loss
At some point, your family member will experience grief and loss, this could be the loss of a parent or the death of a peer, or when someone gets sick or injured. Grief or loss can also be experienced when going through significant life changes, for example, 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
as if 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 on KidsHealth 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 okay to ask for help. Provide assurance that the person is not alone and that there are others that 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.
Financial & Legal Information
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.
IHC – A Guide for Supporters of People with an Intellectual Disability.
* Decision Making is also discussed in Part 3 – Adulthood.
Should someone feel they need help making decisions, there are a couple of things they can do through the Family Court:
give someone an enduring power of attorney
appoint a welfare guardian or property manager.
A power of attorney is a legal document that allows someone to make decisions and sign documents on their behalf, if they are unable to do this for themselves. Who this person is needs careful consideration.
The most common type of power of attorney is an enduring power of attorney (EPA). You can either have an EPA for personal care and welfare and/or property.
Protection of Personal and Property Rights Act 1988
not to get in the way too much of 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. The Citizens Advice Bureau also has good information on ‘Finding a Lawyer’.
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. The guardianship appointment process is completed every three years.
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.
You may choose to set up a discretionary trust – which can be used to ensure money, property, or investments are protected so that they are still available for your family member. It involves the legal transfer of assets to trustees who have the discretion as to how to deal with these assets, etc.
leave everything to one person except itemised gifts
divide everything between two or more people.
These days you can create a will online; however, choosing a solicitor is a good idea particularly if the will is complex. You will also need to choose your executor – this is the person who will officially carry out your wishes as it is written in your will.
Dying without leaving a will is called dying ‘intestate’. If you die intestate, the law sets out how your estate is handed out. The law determines the order of priority and what amounts are distributed to your family members. This may or may not be what you want to happen.
The basic order of priority is:
spouse, civil union partner or de factor partner, then:
brothers and sisters,
uncles and aunts.
Insurance policies allow you to make ongoing payments to protect you financially against future risks. There are many different types of insurance that can help to cover you and your family in the event of illness, disability or death, including:
You’ll find that policies and premiums can vary between insurance providers. You can ask for quotes from as many as you want. You should find out what you would and wouldn’t be covered for under each option. You can always use a financial adviser who can help you decide what policy is the best one for your needs.
Planning for the Future – Checklist
The following is a brief checklist and guide to help create a ‘Plan for the Future’.
What is the purpose of the plan?
What topics need to be discussed to assist with the creation of the plan? Topics could include:
future living arrangements
changes to supports and services
ongoing health needs and professional support and involvement
end of life planning, and
funeral arrangements, etc.
The plan is based on the wishes of the person and they are able to make their own decisions or are supported to be involved in any decisions about their future.
The right communication tools are in place for this to happen.
Who will oversee the wishes of the plan should family be unable to (ie, circle of support).
That the plan has been agreed to by all those who will be involved.
The individual and/or family have taken the time to talk about what might happen should someone become unwell or pass away (advance care planning for end of life).
The person has friends/social networks and the ability to maintain them.
The person and his support network/s have knowledge about the various services and supports available to them.
If the person lives at home, there is a clear plan in place about transitioning to a new living arrangement and what steps are needed for an easier transition.
What the process will be so that you feel satisfied that your family member is safe and who will keep an eye on his or her wellbeing?
Has produced ‘We’re Living Well but Dying Matters’ about including people with learning disabilities in discussions around death, dying and bereavement. This can be purchased or they have You Tube clips you can link to.
Is a website provided by the National Advance Care Planning Cooperative whose vision is that “all people in New Zealand will have access to comprehensive, structured and effective Advance Care Planning”.
All efforts were made to ensure the information in this resource was accurate at the time of publishing. This document represents the current system and will be reviewed at a later date to reflect national changes.
If you have additional tips you think would be useful for carers/families/whānau, please email firstname.lastname@example.org for inclusion into future editions of this resource