But families were still not paid for their carer roles – placing immense pressure on household budgets . After multiple legal challenges to the status quo , restricted provision for family funding was introduced .
In 2011 , disabled people and their allies developed the person-centred principles of the Enabling Good Lives framework .
During COVID , families were allowed more support and flexibility in how funding was spent . In July 2022 , the community finally got its own ministry , Whaikaha .
24 / 7 care and the need for respite
Care can include constant planning and managing daily routines including medical interventions and personal cares , feeding , lifting and transferring , remaining alert through wakeful nights , and to children whose behavioural responses can be unpredictable . Care includes trying to avoid situations of sensory overload , constant washing and cleaning , fighting for school access and against other barriers , finding and employing carers , learning new communication technologies and fighting for appropriate equipment .
There may also be also hostility or indifference from those who don ’ t understand . Families with disabled children are often also supporting other siblings and keeping a sometimes fragile family unit together with precarious finances . This care is often for the lifetime of the disabled person .
Respite funding offers carers a break from their caring routines , but also for disabled people to have a break from families .
Just as in 1949 , parents want to care for their much loved children but the support and respite required varies from family to family as each disabled person is unique . Respite must be flexible , funded and timely . But now that flexibility has suddenly “ paused ”.
The Intellectually Handicapped Children ’ s Parents ’ Association is 75 years old this year . Despite much advocacy , few gains are really entrenched in a way that can ’ t be taken away . Instead , support is fragile . The assumption endures that only “ natural ” supports – family and , in particular , mothers – are required for disabled children .
Those earlier battling parents would recognise today ’ s battling parents . Disabled children and adults are again second class citizens . But what this debacle has shown is that the “ disability sector ” in all its diversity , is united , strong and vocal .
This article was originally published in The Conversation . Read the original article here .
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