The Impact of Policies and Legislation on the Structure and Delivery of Support Services for Children With Cerebral Palsy and Their Families in Aotearoa New Zealand: A Professional Perspective

Abstract

The Aotearoa New Zealand health system in Aotearoa New Zealand currently provides disability support services to children living with cerebral palsy and their families built on key policy and legislation which has created two distinct disability support pathways. One pathway is provided through the Accident Compensation Corporation and the other through Te Whatu Ora (Health New Zealand) districts. There is consensus that these pathways result in significant inequities in terms of support service delivery. Māori and Pacific People are particularly impacted by this inequity. In the absence of literature that critically analyses this situation, the purpose of this paper is to examine, understand and critique how disability support services are structured and delivered to children living with cerebral palsy and their families in Aotearoa New Zealand. Two clinical vignettes illustrate the challenges and inequities faced by families and demonstrates how the two separate pathways impact service delivery, opportunities to thrive and health outcomes. This paper will highlight that there is a need for a review of the current system which is timely considering the recent establishment of Te Whatu Ora - Health New Zealand, Te Aka Whai Ora - Māori Health Authority, and Whaikaha - the Ministry for Disabled Peoples. TE REO MĀORI TRANSLATION Te pānga o ngā kaupapa here me ngā ture ki te hanganga me te horanga o ngā ratonga tautoko mō ngā tamariki kua pāngia e te mate whakatīmohea, me ō rātou whānau i Aotearoa: He tirohanga ngaio Ngā Ariā Matua Ko tā te pūnaha Hauora o Aotearoa o tēnei wā he hora ratonga tautoko ki ngā tamariki kua pāngia e te mate whakatīmohea me ō rātou whānau. E rua ngā ara tautoko hauātanga motuhake kua waihangatia, i roto i ngā whakatau kaupapa here me ngā ture matua. Ko tētahi ara he mea whāngai ki te pūtea, he mea hora hoki mā roto i te Kāporeihana Āwhina Hunga Whara, he Whakahaere Karauna; ko tētahi ka horaina mā ngā rohe o Te Whatu Ora (Health New Zealand). Ko te whakaaro o te nuinga, nā ēnei ara e rua he maha ngā korenga e ōrite o ngā horanga ratonga tautoko. Ko ngāi Māori me Ngā Iwi o Te Moana-nui-a-Kiwa te hunga ka tino pāngia e ēnei korenga e ōrite. Mā ētahi pūrākau poto taurima tūroro e rua, kotahi pūrākau mō tētahi, mō tētahi, e whakaahua ngā rerekētanga o te wātea me te horanga i ngā ratonga hauora, tautoko hoki. E anga ana tēnei pepa ki te whakaahua he pēhea te waihanga o ngā ratonga tautoko hauātanga ki ngā tamariki kua pāngia e te mate whakatīmohea me ō rātou whānau i Aotearoa, me te whakakite i ngā taumahatanga me ngā korenga e ōrite kei mua i ngā whānau, e pēhi nei i ō rātou whāinga wāhi kia puāwai, me ō rātou pūtanga hauora. E akiaki ana tēnei pepa kia whakahoutia wawetia te pūnaha o nāianei, ā, he mea tika mō tēnei wā, i muri i te whakatūranga i tēnei tau o Te Whatu Ora, o Te Aka Whai Ora (Māori Health Authority) me Whaikaha (Ministry of Disabled People). Ngā kupu matua: te mate whakatīmohea, tamariki, ngā whānau, ture, kaupapa here