Prior to the 2011 election the IHC Advocacy team developed a lobbying publication Call to Action – What needs to change for children and young people with disabilities and their families.

IHC made submissions early in 2012 to the Government’s Green Paper on Vulnerable Children and the Select Committee’s Inquiry into Determinants of Wellbeing for Maori Children. Our submissions highlighted that disabled children and young people, and their families often struggled to have their needs addressed in  policy development.

Preparation for our submissions confirmed what we had written in the Call to Action publication i.e. support for families is limited and poorly coordinated by the Health, Education and Social Development Ministries.

IHC Advocacy decided it was time to talk to families of disabled children and young people and the agencies that support them in communities as we knew that a Government response to the Vulnerable Children Green Paper would take time.

We decided to work within local communities. A community development approach was utilized and 15 communities across New Zealand were visited in 2012.

An Advocacy to the Heartland Forum concept was developed. Our intention was to:

• Fill the information gap that was being reported to us – by delivering information about laws, entitlements and policies which impact on the lives of children and young people with disabilities and their families
• Facilitate community conversations to identify what is working well and what opportunities existed for change locally

and

• To gain information about issues that need to be fixed at a government level

Additionally the presenters made themselves available to individuals during the lunch hour and at the conclusion of each forum to provide individual advocacy advice and support as required.

Responses to the forum agenda

1.  Introduction to IHC

The introduction to IHC at the forums, including an explanation of the structure of the organisation and the role of the Advocacy team was new information to most attendees. People were pleased to learn that they could contact the Advocacy team for information and advice and the advocates have received a number of post forum contacts from people who attended. Families were very interested in learning about IHC Volunteering and the library. Donors to the Calf Scheme attended in several communities and they reacted positively to seeing how their donations contributed to the advocacy team and IHC resources.

2.  Information and resources

Receiving in hardcopy resources that explained the “systems” across government agencies that impact on disabled children and young people and their families was a highlight for many participants and demonstrates the significant need for information that families and the agencies that support them have.

People appreciated receiving information in hard copy, and reported being overwhelmed and frustrated having to navigate a whole range of websites to try and locate information, and reported that “you don’t know what you don’t know so you don’t even know what to look for, and no one tells you”.

Participants reported feeling confused and over whelmed by changes to support systems that are being signalled by government and they required explanation about proposed welfare reforms, the new model of disability supports, paid family caregivers, the NASC system, sleepover case, individualised funding, changes in special education, closure of special schools, charter schools and league tables for example.

3.  Call to Action stories

The stories from the Call to Action resonated with the attendees and confirmed that the issues highlighted are widespread across New Zealand.                              

A. Early Supports

a. Issues were raised in relation to screening practices and families reported feeling pressure to abort and being made to feel guilty if they chose to continue with the pregnancy.

b. Parents reported that diagnosis at the time of birth was made even more difficult by staff lacking disability knowledge and not providing accurate information or links to organisations that provide support in the community. Families reported a lack of information/flyers etc being evident and made suggestions that there should be specific booths at Starship, on maternity wards, at Child Development units, Plunket and other Well-Child providers and paediatricians.

c. Frustration was felt that everything that occurred with their baby was attributed to the disability and their baby was rarely seen as a baby first.  Mainstream medical professionals were reported as lacking knowledge about and being disinterested in disability.

d. Parents of children with rare syndromes said that they had to become the experts and the internet and online communities become their resource and it was they who provided the Drs and other professionals with information. Families reported that no one thought to tell parents that they could be eligible for supports and simple assistance such as a Nappy service could be life changing.

e. Families recommended that a pack be developed for parents of disabled children with accurate information about supports available across all government agencies and with contact details of local community support groups. These packs should be readily available at all the places parents of young disabled children attend.

d. Families also recommended that all medical professionals be trained in disability awareness and that ante natal screening staff receive training that does not present disability as a burden that should be removed.

e. Families commented that places like Child Development Units have become very busy places and some reported that in earlier times staff had invited groups of parents and children with similar impairments to meetings/ coffee type mornings and that these had been most beneficial.

f. Families who did not receive a diagnosis of disability until their child was older spoke movingly of the battle to get doctors, Plunket and other Well Child providers to listen to their concerns about their child’s development. Many reported knowing for years that “something” was wrong and struggling to get someone to pay attention to their concerns.

g. Several attendees were parents of children with rare disorders. International internet support groups had become their lifeline. They also talked about how they had to become the experts in their child’s disorder as NZ lacked medical expertise and that this made their lives overwhelmingly busy and stressful.

h. Families spoke of the constant round of appointments with no timetable coordination or cohesion between hospital departments or surgeries. Rural families spoke of having to drive huge distances for appointments, leaving other children and partners behind to manage business or a farm which was a burden that did not seem to be understood or supported and of having to be accommodated in unfamiliar cities.

i. The financial impact of having to adjust lives – mothers not being able to return to work like other mothers, not being able to help with the family business or farm, children not being welcomed at local child care facilities so mothers could work were all cited as not being understood or acknowledged by government agencies.

j. Relationship breakup was acknowledged as a common consequence of having a disabled child and many attendees reported the stress of a disabled child as a contributor to their own relationship breakup. Attendees reported lives of poverty as sole parents they become reliant on welfare payments and because of lack of pre- school and out of school care for their disabled child they were unable to work. Families were frustrated at not being able to use funded supports in ways that would most benefit their individual circumstances and particular frustration was expressed about Carer Support and respite services.

B. Education

a. Families across New Zealand supported the principles of inclusion, but many families reported struggling to have their child’s needs responded to appropriately in mainstream settings.

b. Enrolment at local schools had been an issue for many and where children were attending local schools families reported that their child was not receiving an adapted education programme. The said classroom teachers and teacher aides appeared to be poorly trained and lacking in the skills necessary to educate their child.

c. Families reported that they were:  often required to keep their child at home if the teacher aide was unavailable, having to provide additional support for school excursions, begin asked to contribute to the costs of the teacher aide, being asked to provide support in the taxi or bus taking the child to and from school.

d. Families were concerned that their child was not valued and schools saw their child as a burden and that they were expected to feel grateful for what the school was doing and were seen as trouble makers if they requested more support or suggested changes in approach for their child.

e. Families who had chosen special schools were nervous and concerned at the direction they perceived being taken with the announcements around special residential schools and they were fearful that special schools in their communities would be targeted next.

f. Families were confused by changes to Group Special Education, and the roles of Resource Teachers and other specialist type services.

g. Parents viewed the ORS scheme as an unfair process that lacks transparency and is often dependent on the skills of the applicant not the needs of the child. They saw the eligibility criteria for ORS funding as unrealistic and bearing little relationship to the needs of disabled children. Concerns were raised about the ORS appeal process and that requiring parents to appeal against Ministry of Education decisions as a flawed process.

h. Parents saw the ORS scheme being used as establishing eligibility for adult funded services as unfair.

i. Many parents reported that as soon as their child had made any progress at school, supports were removed and time for consolidation and next steps did not occur and so their child risked losing new skills attained.

 C. Integrated Agency Support

a. This story introduced utilising a Strengthening Families process as a way of getting all the agencies involved in a family’s life involved.  Several families reported having used Strengthening Families process with success.

b. Concerns about the Strengthening Families were raised: in some regions it was reported that hospital medical staff refused to attend, others reported that their coordinator had seemed to lack disability awareness, families reported that agency and professional attitude and response to their needs changed when a Strengthening Family process was initiated.

c. it was suggested that there should be a similar process made available for disabled adults because vulnerable adults in their communities also struggled to have their needs responded to in an holistic and  across agency way.

d. Many families said that they often found navigation of agencies overwhelming and they needed support.

e. IHC heard of local initiatives e.g. Northable’s Navigator programme in Northland and CCS Supported Lifestyles service in the Waikato and Bay of Plenty. Families were positive about these services which have been developed locally and reported that they respond effectively to the needs of families and reduce their need for government funded services.

D. Transition to Adulthood

a. This was the issue of greatest concern to families. Families whose child was not in receipt of ORS funding were particularly concerned.

b. Many families said there were no options post school years in their community that were age appropriate for their son and daughter.

c. They were concerned that secondary schools were not working actively with their child and the family to plan for real jobs with a future.

d. Insufficient places were available with local tertiary education providers and when their young adult graduated there was nothing available.

e. All present found the system of transition services, supported employment, Workbridge, minimum wage exemptions, fading productivity allowances and so on difficult to comprehend and navigate and many parents reported that current services do not work well for people with an intellectual disability, autism and behaviours that challenge.

f. People were interested in the signalled changes to day service delivery in Christchurch but were sceptical about whether more individualised services would be affordable.

g. Families were concerned about the announced welfare reforms and were concerned that their young people would be condemned to a life time of welfare dependence on the proposed Supported Living Payment and no supports being provided to enable them to work.

h. Families were worried that the proposed new welfare benefit system would not have the flexibility needed for their sons and daughters to live and work in their local community.

4.  Community Discussion

The forum agenda included a community discussion. In most communities people made links with others and committed to meet again for support.  In some communities solutions to specific issues were resolved locally and immediately e.g. people linked with NASC staff members present, people linked with local advocates, people linked with local providers.

Some discussion or queries prompted advocacy to contact local or government officials in an attempt to seek clarity and explanation for individual families around decisions made.

It was apparent that where there were good  levels of connectedness and services in regions that this was often due to historical ad hoc decisions or innovations that resulted in organisations such as the Champion Centre in Christchurch, Northable Navigator service and CCS Supported Lifestyles service being developed.

Some communities had a strong local individual who was often regarded as “saintly” by people who had used them as a support or an advocate. Such individuals are critical in local communities. They were often unpaid, or recipients of little funding, or if employed were people who would go the extra mile. They are true community connectors and are valuable allies for disabled children, young people and their families.

Conclusion

Communities are hungry for information. Families of disabled children and the agencies that support them, find navigation of a disjointed disability support system enormously difficult and frustrating.

IHC Advocates confirmed time and time again that the stories in our Call to Action are not isolated examples but an accurate portrayal of the issues confronting families and their disabled children and young adults throughout New Zealand.

In some communities organisations, services or a strong local individuals are “plugging the gaps” and there were examples of local innovative services and supports. These ad hoc local initiatives are invaluable to families of disabled children and young people in those communities. Many of these small initiatives were running on good will and local charity dollars.

IHC Advocacy believes that government and funders of services should take the time to learn from Heartland New Zealand about what works best for people in their local New Zealand communities and consider replicating these examples of responsive good practice, rather than looking off shore and importing overseas service models.

Looking Forward

IHC Advocacy is committed to continuing to provide disabled people, their families and people who support them with accurate information to assist them to navigate the disability support system that currently exists in New Zealand.

IHC Advocates will continue to lobby and speak up for disabled people and their families at a national level to try and influence changes that need to happen.

In 2013 IHC Advocates will meet with local community organisation representatives in Heartland New Zealand and encourage and challenge them to be more responsive to the needs and aspirations of everyone that lives in their community including the 17% who are affected by disability.  We will be reporting to them what we learnt in our Advocacy to the Heartland Forums in 2012 and providing them with the information they need to make changes that will make their community inclusive.