IHC Children’s Rights Seminar – Wellington, March 2010

PRESENTERS:

Anne Kerslake Hendricks

Steve Attwood

Introduction to the Families Commission> A voice for New Zealand families and whānau

> Focus on families through the eyes of families – the family/whanau lens – to promote debate and action on family issues

> We advocate for family issues generally, not individual families – neither a service provider nor funder

> Autonomous Crown entity governed by a board of Commissioners

What We Do> Listen to the voices of families and whānau

> Increase public awareness and promote better understanding of matters relating to the interests of families

> Encourage and facilitate the development and provision of government policies designed to promote or serve the interests of families and whanau

> Stimulate and promote research into families

> Work with decision makers at govt, community and NGO levels to bring about sustainable change for the benefit of families and whānau

Current Priorities> Economic wellbeing: Families have the

resources they need to support their well-being. Whānau have the resources they need to achieve whānau ora.

> Family services and communities: Families and whānau live in safe, well connected and supportive environments.

> Family relationships: Families have strong, safe and resilient relationships. Whānau have strong, safe and resilient relationships based on whānaungatanga.

How Do We Hear From Families Living With Disability?> Online “Couch” Polls e.g. Disability and Family

Life; Caring Roles and Responsibilities

> “Families Panel” (“Parents Panel”)

> Research projects

> Forums and seminars

> Meetings

> Website enquiries

Couch Poll

> www.thecouch.org.nz

> Have your say!

> New polls every 6 weeks

> Poll results on website

What have families living with disability told us?> They often have to navigate a range of services,

with little guidance

> Concerns about choice, quality, access to support services and respite care, inadequate financial support

> More information needed about how and where to access support

Disability and Family Life Poll (2006)> Participants – Couch members with a disability,

families supporting a disabled family member (mainly children and young people)

> Families would like improved: • Support for carers

• Respite care

• Financial support

• Public understanding and acceptance

Challenges and Concerns

> Insufficient specialists

> Need more home help and respite care

> Lack of disability services in rural areas

> Lack of accessible transport and venues

> Concerns about how transitions will be managed e.g. school entry

> Little time for socialising as a family or for parents to have time on their own

What would make the most difference to your family life in the future?

“Education/support for whānau/friends and others so that they understand disability and [the] impact on family/community.”

“Recognition by government that families of disabled people deserve support and that they should be valued in their respective communities. We all love our “children” regardless of their ages, but in my experience families of people who are disabled have given up a huge amount to ensure their dependent [child] has a valued, dignified life.”

What would make the most difference to your family life in the future?

“…the need for “professionals” to recognise that a diagnosis is helpful to the child and family. A diagnosis is quite different to a label…e.g. lazy, disruptive…these are totally unproductive and negative labels that cause harm to our children.

However, a diagnosis allows treatment/strategies to be implemented, the earlier the better. It is currently an uphill battle for families to obtain the necessary diagnostic help they need.”

What would make the most difference to your family life in the future?

“Being able to enjoy life and connect socially with others, rather than having to spend all our time grappling with the system and/or finding the time and money to provide the required help and programmes ourselves.

Being less stressed, emotionally and financially – this is a vicious cycle – when parents/other family members are stressed out or ill, they become less effective at helping the person with a disability, who then may become more difficult to manage, putting more stress on the family and so on.”

What would make the most difference to your family life in the future?

“Ongoing support through Mental Health Services in our region.

Better funding to support my child and the teachers within the school system.

A mentor/friend beyond the family that could come and play/interact with my child and be able to relate to the wondrous imagination, compassion and creative abilities that he has.”

What would make the most difference to your family life in the future?

“Not having to fight so hard for our children’s rights – we get tired.

Having better systems and support in place for schools, especially for teacher aide hours.

Receiving ongoing respite care and home help so our family can function.”

What would make the most difference to your family life in the future?

“A single, all-encompassing approach that cuts out multiple agencies and constantly changing personnel with no prior knowledge of our son.”

“I have access to carer support days but often struggle to find a carer. If I had flexibility with who could provide support e.g. accessing Boy Scouts, music lessons etc it would give me respite and support his needs.”

What would make the most difference to your family life in the future?

“Greater opportunities to network with other families with similar concerns.

Increased willingness for government agencies to see the person as an individual instead of a number or a condition.

A greater willingness for service providers to really listen to what families and people with disabilities have to say.”

Out of School Services report (2007)> Our recommendation: services should

receive funding incentives to increase access for children with disabilities

> Families told us that they have great difficulty accessing out of school services

> Families should be able to access local services of their choice

> Adequate funding needs to be made available to cover costs (e.g. extra staff, building modifications, appropriate equipment)

Parents Panel (Families Panel)> Panels include a group of parents of children

with a disability; have met 4 times

> Groups discuss particular topics (e.g. resilience)

> Points raised shared with Chief Commissioner, Chief Executive, and managers and staff from our Policy and Research and Community Relations Teams

> Some issues shared externally (e.g. with Office for Disability Issues at Ministry of Social Development)

> Panel membership changes over time – one of the next groups will consist of disabled parents

Parents Panel: Characteristics of Resilient Families > Resilient families have faith, are adaptable,

busy, positive, hopeful and passionate

> Surround themselves with supportive people to create safe and supportive environments

> Make time for relationships and have access to appropriate respite

> “Make it work the best they can”

> Talk together, stick together and present a united front

Parents Panel: What Hinders Family Resilience?> “Deficit model” of some services (particularly

health and education) - to receive support, families have to present themselves as not coping

> Being given incorrect or outdated information, or too much information at once

> Other’s attitudes towards and judgement of family’s situation

> Lack of appropriate respite care – affects family relationships and prevents “time out”

> Lack of family support

Parents Panel: What Supports Family Resilience?> Support from government

> Support from the community

> Support from family members

> Positive “role models” who show families how to be resilient

> Good parenting, advocacy and relationship skills

> Access to counselling and support services

> Faith, beliefs and values that enable them to “just keep going”

A Guide for Carers

> A Guide for Carers: He Aratohu mā ngā Kaitiaki

> Published by Ministry of Social Development (Sept, 2009)

> Practical information for people caring for family or friends who are older or have ill health, a disability or a mental health, alcohol or other drug issue.

>http://www.msd.govt.nz/documents/what-we-can-do/community/carers/carers-brochure-english.pdf

A Guide for Carers: ContentsMoney

Financial help

Transport and travel

People

Having a break

Help at home

Assessing needs

Children with special education needs

Balancing your caring role with work and study

Health and disability rights

Help with managing bladder or bowel control

Things

Equipment and modifications

Housing and vehicle modifications

Injury cover

Directory (contact information)

Families Commission Publications

> The Role of Whānau in the Lives of Māori with Physical Disabilities (Collins and Hickey, 2006)

> Managing Multiple Sclerosis and Motherhood (Payne, McPherson and Crerar, 2007)

> Living with Chronic Illness: Support for Family Members Who Live with Heart Failure (Whitehead,

2009)

> Who Cares for People with Schizophrenia: Family Carers’ Health, Circumstances and Adjustments (Collings, 2009)

Families Commission Publications

> Through the Eyes of Parents, Children and Friends: Exploring the Resilience and Success Factors of Disabled Parents (Raffensberger, Morton

and Gage, due June 2011)

> When Schools Out: Conversations with Parents, Carers and Children About Out of School Services (Research Report No 1/2007)

> Changing Roles: The Pleasures and Pressures of Being a Grandparent in New Zealand (Research

Report No 1/2010)

> See our website for full publications list: www.nzfamilies.org.nz

Sharing Our Findings

> Submissions (e.g. Carers’ Strategy)

> Meetings with government agencies, NGOs and others

> Research Forums

> Research Reports and Summaries

> Families Commission website

> Families Commission newsletter: “Family Voice”

> Press Releases

Families Day Press Release (2007)

> The international theme this year is ‘Families and People with Disabilities’. In New Zealand, one of the biggest issues facing families is work-life balance. For those with a disability, or caring for someone with a disability, work-life balance is a particular challenge, particularly if there are difficulties getting appropriate home help and respite care.” [Commissioner Sandra Alofivae, 2007]

Family Services> Improving service delivery to families and whānau

by identifying and promoting exemplars of innovative practice that works

> Decision-makers, funders and service delivery organisations support families using a sustainable, whole-of-family and whānau approach – not just on the individual

> Advocacy on improved services for families and whānau

> Acting as a catalyst or broker for change, especially around creating joined up services for a whole-of-family approach

>www.nzfamilies.org.nz