Update re Families Virtual Gathering Zoom meetings

Over the last two weeks Complex Care Group collaborated with Family Network NZ to deliver 4x Zoom calls in which parents could participate, meet each-other, and express their concerns and questions to Ministry of Health and other officials.

Zoom is an online ‘virtual’ meeting platform enabling groups of up to 100+ people to “see” each-other, to talk, exchange ideas and concerns, etc. On Zoom your camera can be switched off and/or your microphone can be muted if necessary – this is useful for those of us who are juggling the care of their disabled loved one. Zoom is free, and participants simply click on a link which is emailed to you.

The Zoom meeting details, topics, guest speakers and issues discussed are summarised here:

ZOOM MEETING 11TH MAY 2020

Guest speakers: Adri Isbister, Deputy Director General Disability, Ministry of Health and Amanda Bleckmann, Group Manager, Operational Performance, Disability, Ministry of Health.

Topics discussed:

Flexible use of Individualised Funding during Alert Levels 4 and 3, will this continue? ‘Invisibility’ of parents during lockdown. Parents busy doing the day to day cares while staff unable to work. Behaviour support for serious issues unable to be handled by Explore Behaviour Services during lockdown – suggested 0800 advice line. The need to quickly research how to use supports ‘flexibly’, what does this mean?

ZOOM MEETING 14TH MAY 2020

Guest Speaker: Could not get an official speaker due to being Budget Day – Bridget and Lisa hosted this meeting and many topics were covered:

Topics discussed:

Types of respite and how it might be accessed in future. How flexible is flexible. Will the Enhanced Individualised Funding Guidelines allowed under Levels 4, 3 and 2 be allowed beyond 30th June 2020? Need for prompt information from government on exactly what is allowed under the Alert Levels.

ZOOM MEETING 18TH MAY 2020

Guest speaker: Adri Isbister, Deputy Director General, Disability, Ministry of Health

Topics discussed:

When will Enabling Good Lives be rolled out nationwide? How long before all families can access this flexibility and personalised budgets? Who will help families manage personalised budgets? The Natural Authority of Families (we know our loved ones best). Suddenness of the lockdown and effect on families – caregivers stood down due to their age or health and vulnerability of disabled clients, especially with limited Personal Protective Equipment.

Also, Budget 2020 – more funding for disability – details in Vote Health document (pages 87-90) https://treasury.govt.nz/sites/default/files/2020-05/est20-v6-health.pdf

ZOOM MEETING 21ST MAY 2020

Guest speakers: Adri Isbister, Amanda Bleckmann and Paul Miller (Principal Advisor, System Transformation), Ministry of Health – and Claire Stearne, Ministry of Social Development.

Topics discussed:

Ministry of Health: The role of NASC into the future. Will the current flexible use of Carer Support and Individualised Funding continue beyond 30th June. Need Ministry of Health to “hear” us and consider our point of view in future supports. Access to Respite and the MOH future direction re respite.

Ministry of Social Development: Post schooling programmes during Alert Level 2 and beyond. What are flexible post schooling programmes? Access to flexible Community Participation funding (ie: not only Very High Needs Funding). What if home based programmes don’t work for families and their disabled adult child? Who provides the support/supervision for home based programmes now and beyond. The ways some programmes have been delivering day programmes during lockdown.

These were the issues discussed. The Ministry of Health and Ministry of Social Development speakers did not always have answers to the questions, but importantly they are committed to engaging in these online meetings with families, and to hear us. Ministry officials encourage families to share potential solutions. There was much discussion (and agreement from MOH) that families want to retain the flexibility of their supports and make their funded support work for their own unique situation (ie: not fit a square peg into a round hole).

These Zoom gatherings have been immensely popular with attendance ranging from 15 to 28 attendees. Therefore another 4x Zoom calls are planned for Thursdays 11.30am till 1pm starting from next Thursday 28th May. Email Bridget Snedden to register bridget@familynetwork.co.nz or contact Lisa Martin for more information complexcaregroup@xtra.co.nz or phone 027 266 7690.