Our History

Raymond George Mathews had an idea. Later described as a man with “vision and [an] abiding interest in the protection of the rights of people with intellectual handicaps,”[1] his idea was a solution to the concern and anxiety that parents feel about the welfare of their adult intellectually disabled children after parents have passed away. The proposal was simple – parents and families could join an organisation that assigned an advocate or “visitor” for their son or daughter for life. Ray’s idea took form with the assistance of a young lawyer John Hanning[2] who drafted a Deed, was implemented in the incorporation and registration of a charitable Trust in 1967 called the Trusteeship Scheme of the New Zealand Society for the Intellectually Handicapped Inc.[3] The new organisation’s mandate was “to appoint and supervise suitably qualified welfare visitors who will regularly visit intellectually handicapped children one or both of whose parents are dead or for any other reason are unable to care for such children, and who will report to the Society on the general welfare and needs of such children.”[4]

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Ray had worked as the General Secretary for the Intellectually Handicapped Children’s Parent’s Association (IHCPA, now IHC) since 1954, and utilising his professional networks he enlisted that Association’s president, Donald Beasley, as a fellow founding Trustee. There were three other founding Trustees, David Beattie, a Judge of the Supreme Court and later Governor General, John Burn-Murdoch, a retired company director, and John Sullivan, the director of Caltex Oil (NZ) who would serve as the Trust’s chair for over 20 years.

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Don Beasley became an active champion of the Trust and enrolled the Trust’s first member in 1970 from his own home town of Whangarei, a young woman of 13 years old.[5] To perform its responsibilities the Trust demanded financial independence, and required “resources without restricting conditions.” [6] Enrolment was determined to be conditional on the payment of a fee, set at $1000. The family took out a life insurance policy through Provident Life Assurance (now Asteron) which when later settled, funded the payment of the enrolment fee.

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60 other enrolments were received within the year, and after a decade, total enrolments had reached 418. It was at this threshold that John Sullivan, Trust Chair, issued his first Annual Report at the AGM. In this report he stated “Our experience of the role of the Trust and its work over the years since its formation have shown this to be something much more than that of continuing the parents’ role in remembering birthdays and arranging outings, important as the continuance of these arrangements are. The other equally important needs are the recognition of the rights of the Intellectually Handicapped, to be consulted on decisions affecting them, to receive their fair entitlement to welfare, housing, developmental programmes and even in their family estate or Trust funds established for their benefit.”[7]

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In 1978 in an effort to solidify its independence from IHC, the Trust changed its name to The Trust for Intellectually Handicapped People Inc. In 1981 and with enrolments exceeding 500, the Trustees decided to appoint an additional Trustee “elected by those persons who have paid the enrolment fee.”[8] This family representation was provided for by the Trust Deed, but until this stage had not been enacted. In 1982 Mrs Margaret Henshall became the first Contributor Representative on the Board.[9]

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The Trust delivered its services by appointing a “personal visitor” to regularly visit with and oversee the general welfare of its fully supported members (whose parents had passed away) which by 1981 numbered 42 of total enrolments. This oversight was supplemented by an annual assessment conducted by Donald Beasley, President of IHC, Trustee, and a paediatrician by profession.[10]

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Organisationally the Trust was governed by its Board, provided executive secretarial services by founder Ray Mathews, and coordinated Nationally by an employed supervisor.[11] In 1983 and 1984 and with continuing growth, Trustees recognised the need to appoint a Trust Director to manage and lead the team of 30 visiting staff, and coordinate the service provision of the now 755 enrolled members. Don Beasley filled this role on a temporary and part time basis until Ms Lou MacDonald, a “supervising area social worker of the Wellington Hospital Board” took the position on 1.04.1985.[12] Within her first year of employment Lou had met all members on Full Support, undertaken a survey of the membership to forecast future needs, and begun publicising the work of the Trust in a short television segment.

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Membership numbers peaked in 1987 at 785, contemporary with the passing of The Protection of Personal and Property Rights Act 1988. Prior legislation had meant that individuals committed to an institution on the grounds of illness or infirmity, which constituted a substantial number of the Trust’s membership, lost complete rights to manage their property, “irrespective of the degree of their disability or ability.”[13] The Trust was an active advocate for systemic and legislative change, and had been instrumental in the raising of awareness and submission of proposals which led to the Bill’s enactment.[14] In 1976 Trustee Hon. Justice David Beattie prepared a report informed by international travel and research in Australia, North America, the United Kingdom and Scandinavia titled “Advocacy and Attainment of Rights of the Intellectually Handicapped.” This document “generated a great deal of interest” and the Trust, together with IHC and the NZ Institute of Mental Retardation, formed a working group tasked with advising government and making draft legislative proposals. [15]  The working group’s recommendations included appointing an official called a ‘Public Advocate,’ and in 1981 rejected the Ministry of Justice’s legislative proposal for ‘helpers’ for its lack of safeguards and unfamiliar terminology.

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This legislative tide of change was also accompanied by a social shift in the move away from larger institutions in favour of community-based facilities. The process of de-institutionalisation spanned many years, during which time the Trust sought to extend its services to this population who largely were unable to access advocacy support through conventional enrolment. “To this end the Trust …made a number of representations to government over the years, requesting recognition of and funding for programmes which provide personal advocacy.”[16] In 1991 one such request was successful in securing funding with the department of Social Welfare. The project established a friend connection programme in Dunedin for people without families who had been relocated from Cherry Farm Hospital, which closed in 1992.  Within 15 months it had received and responded to 26 referrals, with a further 25 expected within the next year.[17] By 1995 the scheme had registered as its own Charitable Trust and became fully independent from P.A.T, with ongoing funding secured through the Southern Regional Health Authority. 27 years later, Friend-Link, continues to operate successfully in Dunedin today.

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A decade after Cherry Farm was closed, the Trust co-ordinated and led an independent working group considering living options for residents of Kimberley in the Manawatu. The Trust was later contracted by the Ministry of Health to provide short term advocacy for 60 of the 384 residents.

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Membership through sponsorship was also developed, enabled through philanthropic donations, legacies, and notably the gifting of 20,000 shares in Rangatira Ltd from the J.R Mackenzie Trust to “cover the cost of enrolling ‘orphan’ intellectually handicapped people.”[18]

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Over time the costs associated with operating the Trust increased, reflected in the increases to membership fees overtime. After the first nine years of operation the original fee had increased by 50% to $1500.  A 1983 Actuarial Report revealed that “allowing for the effects of inflation on the operating costs of the Trust and changes in the average life expectancy of Intellectually Handicapped people,” further fee increases were required.[19] Further increases were made over subsequent years, and by 1997 a sliding scale of fees determined by the parents age was introduced, with immediate service provision costed at $12,375. Unfortunately increasing fee levels resulted in the withdrawal of many families from the Trust.

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At the 25th anniversary of the signing of the original Trust Deed, Trustees sought to rename the Trust to convey the real nature of the Trust’s activities. In 1992 the name was changed to The Personal Advocacy Trust Incorporated, with the subheading “A Trust for People with Intellectual Disability.” In 1994 Lou MacDonald stepped down as National Director of the Trust and was succeeded by Helen Walch and then Danielle Levy. Staff numbers peaked at 149 in 2001, though the majority of this cohort were acting in a voluntary capacity. Staff gathered annually for training, often funded through donations by the J.R.McKenzie Trust. Verity Doak assumed the role of Director in 2002, and led the Trust till 2014. At this time a major review, restructure and realignment of the organisation was undertaken. With future sustainability a key concern, the decision was made to temporarily close enrolments which later reopened in 2017, thank and release all volunteer advocates, and employ a small qualified and experienced workforce to provide services nationally.

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• Today the Trust continues to implement the vision of its founders, with more than 1,380 enrolments in the last 50 years. Current membership is circa 400, and the Trust advocates for its members nationwide in the recognition and defence of their rights and wellbeing.