What is advocacy?
It is a service that argues for or defends another who is unable (or needs help) to do so for themselves Our service is designed to work alongside the person assisting them, where needed, so they remain happy and healthy as much as possible within their individual circumstances. We are there to maintain the rights of an individual so they continue to receive the best services available, taking any necessary actions to ensure a positive outcome. We encourage the potential for leading as independent a life as possible.
Why does my family member need advocacy?
New Zealanders with Intellectual Disabilities are some of our most vulnerable citizens. Unfortunately, they are at greater risk of physical, emotional, and financial abuse and mistreatment. Whilst our country has great disability support services and resources available, assistance is often required to navigate through them and to ensure that all entitlements are being received and that all treatment is fair. Advocates work to make sure our members have all of their human rights protected and recognised, as well as have the best possible outcomes for a happy and fulfilling life.
Can you give some examples of advocacy?
In recent times the Trust’s Advocates have worked to help members in a range of situations – large and complex to small and straightforward. One Advocate helped a member approach their local council regarding wheelchair-friendly pedestrian phasing at intersections. As a direct result of this intervention the phasing was changed. Another identified that a member felt they were not being treated fairly by service provider staff, and worked with the member and the staff to come to an agreement. In another similar situation when a resolution wasn’t reached, the advocate assisted the member to move to a different house. On the graver end of the scale, advocates have been present to thwart the efforts of family members or associates seeking to take financial advantage of our members.
Is it value for money?
The Personal Advocacy Trust offers a unique service that guarantees service for an as yet indeterminate length of time – the lifetime of the member. The variance in lifetime durations necessarily means that there is variance in the value different members experience from their full support advocacy; some may be full support members for 2 years or others for 30. In either scenario the family and the member had the security and confidence associated with the knowledge that someone would be there to advocate with and for them always.
PAT recognises that there are many other organisations offering free Advocacy services, such as the Health and Disability Commission, IHC Advocacy, People First, CCS Disability Action, and Age Concern. These services are important and valuable, however differ from the Personal Advocacy’s service in that they are not wholly independent and may have competing interests.
What would happen to my family member if they didn’t have an advocate?
In the best case scenario your family member would be in a stable and supportive environment where they were empowered to advocate for themselves. Without being able to guarantee such a situation, it is wholly possible and likely that they would experience frustrations, discrimination and worse yet, abuse without an Advocate there to be their voice.
What if I can’t afford to join my family member up, but I really think it is important and would like to. Is there any financial help or do you have any ideas to help me fund it?
The Personal Advocacy Trust recognises that funding the enrolment fee may be difficult for many families. To try and make the service more accessible the Trust allows the fee to be paid in a variety of ways. It may be paid in full as a lump sum, or in instalments paid monthly or annually over a period of five or ten years. Where payment for Full Support is not possible in advance, families may opt to pay by Testamentary Will. Please note that when this option is selected the fee applicable will be the fee current at the time of death, which will have been reviewed and adjusted every three years according to inflation.
There is financial support available to fund short term advocacy needs through the Rangatira Fund.
I have more than one person I would like to enrol. Is there a discount for this?
At times families may have more than one person they would like to enrol in the Trust. Provided that these prospective members are living at the same address, the Trust offers up to a 50% discount from the Pre Support and Full Support Enrolment Fees of the second and any subsequent members.
I think my family member only needs a few hours of advocacy. Can you provide that?
Yes! While lifetime advocacy is the ideal we recognise that it is not always necessary or accessible for people. Sometimes there is a short term crisis that requires an Advocate alongside for a short amount of time. The Personal Advocacy Trust can also provide advocacy support on an hourly basis. Please visit our short term advocacy page for more information.
I want to enrol my family member. Is there a way we can avoid the lifetime enrolment fee, and only pay for what we use?
Yes! Advocacy may also be purchased through a Discretionary Trust. By this method, a family only pays for the advocacy delivered each year, instead of a lifetime in advance. The rest of the Discretionary Trust may be applied for the general well-being of the member, and as defined at the time of establishment. Please note, the balance of the Discretionary Trust must be at least the value of the Immediate Full Support Fee at the time support commences.
Who is the advocate accountable to?
Advocates report to a Team Leader and National Director. All of the Advocate’s reports and visit notes are reviewed by this management team, with prompt and open communication of any complex issues or concerns. As appropriate, these issues and concerns are escalated for review by the Trust Board.
What sort of people become advocates? What training and background do they have?
Our Advocates are carefully selected for their patience, knowledge and respect for people, in addition to their robust knowledge of disability service providers and networks. Whilst we do not have any strict training or qualification requirements, generally Advocates have a background in social work, nursing, special education, health, or working with other vulnerable groups within the community.
Do they have police checks?
All Trust employees, including Regional Advocates, are police vetted as part of the employment process.
Don’t the organisations who care for people with intellectual disabilities look after the interests of the people they care for?
Most service providers and other disability organisations do a great work in caring for the physical and emotional needs of their people they support. These services often have very thinly stretched resources. In many instances our members are not wholly satisfied with their residential services, and draw on the support of their Advocate to improve and change their situation.
Do changes in government policies and funding affect the Personal Advocacy Trust?
In order to be effective in promoting and protecting the interests of its members, PAT is currently administratively and financially independent of Government for its personal advocacy services. The service is funded almost entirely through the payment of a Pre Support Annual Subscription and a Full Support Enrolment Fee by people enrolling a family member or friend as a member of the Trust. Being independent of external controls or priorities, PAT is able to provide an effective advocacy service.
How far will the Trust go when monitoring the quality of care being received?
Our advocates make regular visits and usually become aware if there are any problems by observing the behaviour and general well being of a person and where appropriate, by talking with the person and the key people in the person’s life. Where any concerns arise the matter is discussed with the relevant people, at each level if need be, until a satisfactory resolution is reached. Staff meet monthly for peer support and conversations to enhance their knowledge. We also evaluate each person’s circumstances on an annual basis, assessing their accommodation, day programmes, staff relationships, health, and in fact all aspects of their lives.
Will the Trust find accommodation and work for my family member when I am no longer there?
Whilst we do not provide accommodation, day programmes or employment we can link people with organisations that may be able to provide these services. We will introduce your family member to recognised service providers and follow up on the outcome, providing additional assistance where needed.
How much help with the day to day budgeting can the Trust give — particularly where there is a problem with the handling of money?
Managing day to day finances is not a role an advocate would assist with. Their role is to arrange assistance where it is felt that a person’s interests need protecting. We would prefer, however, for alternative arrangements to be made where an agent is required to manage a person’s benefit payments. We can audit finances at regular intervals.
What role would the Trust have if my family member should marry?
It should not change. We support many people in their married lives and are there to advocate for them and assist with any relationship issues they may have.
What contact will l, as a parent, have with the Trust?
We produce periodic newsletters and will send you a copy of our Annual Report and Accounts. You will also be visited or phoned annually by the Advocate appointed in your region, and contacted by phone by National Office staff to make sure information is current and up to date.
After my death, how will the Trust work alongside other members of my family who are interested in the welfare of my family member?
We are experienced in working alongside relatives in providing mutual support to enhance the quality of life for a person. We would maintain regular contact and co-ordinate with them when providing our advocacy service.
Can the Trust Board administer a trust fund for my family member after my death?
Yes, but you need to negotiate the terms of that trust fund with us during your lifetime in a Memorandum of Understanding with our Trust Board. Please refer to our Discretionary Trust page which gives more detailed information on how to make the necessary financial provisions for your family member.
Can I sponsor someone? What is the Rangatira Fund?
The Trust administers a small reserve called the Rangatira Fund. Originally created from a charitable donation by the JR Mackenzie Trust, the Rangatira Fund has historically paid for the enrolment fee of selected individuals who have had no other means or funds to manage payment themselves. The Personal Advocacy Trust invites philanthropic contributions to the Rangatira Fund to enable the ongoing sponsorship of financially disadvantaged New Zealanders with Intellectual Disabilities.
The Trust continues to apply this fund to finance short term advocacy support for people in need. Please refer to our Rangatira Fund page for more detailed information.