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2017 IHC Survey

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IHC New Zealand
How is New Zealand doing for people with intellectual disabilities?
In July 2017, IHC conducted an online survey to gauge the situation for people with intellectual disabilities in New Zealand. The survey was run over three weeks and took in responses from individuals, families, supporters, and sector workers. IHC also ran focus groups to ask people with intellectual disabilities their views and experiences. These results are a broad snapshot of how the country is doing for people with intellectual disabilities - the challenges and opportunities, hopes and concerns.
AT A GLANCE
Overall responses online
656
• Many respondents said progress was stalled although there are also signs that some things are going the right way. • People with intellectual disabilities continue to face barriers to living good lives. • The quality of people's lives depends on where they live, individual circumstances like wealth and connections and, too often, luck. • Families feel worn down by the difficulties accessing support for their children and are worried about a future where it can be even harder to get support. • The information we have collected points to compounding disadvantage for people with intellectual disabilities and their families, so that opportunities for a good life are limited in many different ways.
77
Responses from sector workers
162
Focus group participants
423
Responses from people with intellectual disabilities and their families
HEALTH
Nearly half of respondents told us healthcare for disabled children is making progress. But more than half of respondents said healthcare is stalled or worsening for adults.
Children
Adults
Yes, New Zealand is getting this right (7.8%)
No and it's getting worse (15.2%)
We are stuck and still not getting this right (31.6%)
Mostly we're heading in the right direction (45.4%)
Yes, New Zealand is getting this right (5.91%)
No and it's getting worse (19.82%)
We are stuck and still not getting this right (37.74%)
Mostly we're heading in the right direction (36.54%)
People told us:
• “GPs don’t really know much about Down syndrome or intellectual disability and [are] always in such a rush that visits are just a nightmare really.” • “There is a lack of education of healthcare professionals about how to care for individuals with an intellectual disability.” • “For those with high and complex needs in particular, there is no clear service pathway and families struggle for support.” • “Support post 18 years of age is non-existent. Our adults need free dental and medical care and access to psychiatric services when needed.”
• “I’ve never had any problem obtaining health treatment for my daughter and I find the professionals are pretty good at dealing with her and listening to me on how best to communicate.” • "My doctor is good at explaining things." • "It used to be Mum that interacted with the doctor but now it's me."
When I first got diagnosed with depression, my support worker and GP were arguing over whether I should be on anti-depressants. Nobody asked me what I wanted.”
WORK
About three-quarters of respondents felt people with intellectual disabilities do not get the right support to enter the work force.
Students
Adults
Yes, New Zealand is getting this right (2.3%)
No and it's getting worse (25.6%)
We are stuck and still not getting this right (49.5%)
Mostly we're heading in the right direction (22.6%)
Yes, New Zealand is getting this right (3.1%)
No and it's getting worse (30.2%)
We are stuck and still not getting this right (50%)
Mostly we're heading in the right direction (16.7%)
People told us:
• "Work is better than being at home doing nothing." • “I’ve worked there for six years but still haven’t been offered a paid job. Mum and dad have tried but my employer came up with silly excuses. I’d like to get a paid job.” • “I would like to work but it is difficult to find.” • “My sense is that the employment market is very tough.” • “We feel helpless and hopeless as far as work options are concerned.”
• “There is little real work on offer for people and so they are stuck on low incomes and all that it means in terms of housing and living options.” • “We could do much better with this people resource.”
"There is very little on offer, it worries me greatly to think of my daughter getting to this stage of life.”
MONEY
Most respondents told us people with intellectual disabilities and their families do not have enough money for food, clothing, bills, going out, having fun, entertainment, transport, holidays, celebrations or paying for additional disability costs.
Children
Adults
Yes, New Zealand is getting this right (1.7%)
No and it's getting worse (40.9%)
We are stuck and still not getting this right (36.1%)
Mostly we're heading in the right direction (21.3%)
Yes, New Zealand is getting this right (2.7%)
No and it's getting worse (44.4%)
We are stuck and still not getting this right (36.2%)
Mostly we're heading in the right direction (16.7%)
People told us:
• “I can’t afford to go flatting.” • “It can be difficult to come up with the money or save when things come up out of the blue, or when I have bills coming up.” • “Haha the benefit is a joke. With hardly any work and not much benefit, life is incredibly difficult to survive.” • “We have to continually top up $ for medical expenses due to her condition, she has no spending money because it is all going to residential care.”
• “We are pretty much living day to day on the ‘breadline’ no money for house maintenance so house in very poor condition, no money for outings, holidays, entertainment – a pretty meagre existence for both of us.” • “We are lucky to have access to EIF (Enhanced Individualised Funding) in our region which is a huge help.”
"The families I work with aren't focused on fun; they are worried about grocery bills and getting through the next week."
EDUCATION
Most respondents told us New Zealand is still not getting education right for people with intellectual disabilities.
Children
Adults
Yes, New Zealand is getting this right (3.5%)
No and it's getting worse (16.2%)
We are stuck and still not getting this right (43.6%)
Mostly we're heading in the right direction (36.7%)
Yes, New Zealand is getting this right (2.6%)
No and it's getting worse (20.7%)
We are stuck and still not getting this right (53%)
Mostly we're heading in the right direction (23.7%)
• “I found it hard at school with literacy. I had no support.” • "The not-so-good thing about school was being bullied and called names." • "If things are too hard, I can get help." • “I left the [mainstream] course as it wasn’t a supportive learning course. People were really hard on me. I didn’t know what I was supposed to do.” • Unless you are lucky enough to find a supportive school, education in NZ is discriminatory to children with intellectual disabilities.”
People told us:
• “A lot of so called inclusion is tokenism and requires a paradigm shift in attitude from ‘our kids can’t do this’ to ‘how can we make it work for our kids’.” • “Once a child leaves school, that's where the support ends and you are left floundering.” • “We have mainstreamed our son at primary level and it has been great. We have been lucky I think to connect with some great people who have made things happen.”
“I constantly feel like I’m battling to get a good education for my child. My child goes to school to be educated not baby sat.”
BEING INCLUDED
247,221
How easily can a child with an intellectual disability join a playgroup, a sports team, or a music class? Are adults with intellectual disabilities included in social, cultural, recreational and community groups? Many respondents felt New Zealand is still not getting this right.
Children
Adults
Yes, New Zealand is getting this right (6.3%)
No and it's getting worse (14.1%)
We are stuck and still not getting this right (41.6%)
Mostly we're heading in the right direction (38%)
Yes, New Zealand is getting this right (7.5%)
No and it's getting worse (11.4%)
We are stuck and still not getting this right (37.7%)
Mostly we're heading in the right direction (43.4%)
People told us:
• “I would like to be able to do some more sport and meet friends for coffee.” • “I think younger children are more included in communities. Adults become more isolated. As the person gets older there are less recreational things for them to do.”
• "It makes me feel good being part of my community." • “It’s an extremely isolating experience. Very little by way of support for families.” • “There are very few groups that would officially say my disabled child is not welcome at them….but also very few that actually cater for him, so he is still largely unable to participate in any meaningful way.” • “An organisation may say that they are inclusive but we have experiences the opposite with comments like “the young children are afraid of him” ie just him being there."
"Being included means everything.”
HOME AND COMMUNITY LIFE
We asked if people with intellectual disabilities have what they need for a home and community life that works for them, respects their culture and preferences and enables choice and control. Most respondents felt that’s not the case.
Children
Adults
Yes, New Zealand is getting this right (5.19%)
No and it's getting worse (19.28%)
We are stuck and still not getting this right (43.26%)
Mostly we're heading in the right direction (32.27%)
Yes, New Zealand is getting this right (4.2%)
No and it's getting worse (14.5%)
We are stuck and still not getting this right (39.5%)
Mostly we're heading in the right direction (41.8%)
People told us:
• “I’d like to move out one day in the future, somewhere close to friends and where it is easy to walk to the train station.” • “My mum is looking at that for me. I said I want to take it nice and slowly.” • “I’d love to go flatting - it's not easy because it's not cheap.” • "Many adults with intellectual disabilities still do not have real choice of where they live or who they live with." • “My son is flatting with a couple of non-disabled guys his age thanks to individualised funding (IF) – very good system and working very well. Do think Enabling Good Lives would help if rolled out to the rest of the country – parents need support to do IF.”
• “Financial hardship adds an extra burden to families already struggling to do their best for their disabled loved ones, limiting their choice and control over a long period of time.” • “If you are from a wealthy family – and/or a family with high cultural capital things may go well but that is a matter of happen-chance and many are left behind.” • “We (mothers) aren't called disabled but in reality we are severely restricted in work and leisure etc by the disjointed options available for day placement, work, transport to and from for our disabled adults.”
"Independent living seems to be the main focus - and for many that means living alone in a little flat, being lonely, bored and broke."
BEING HEARD
Children
Adults
We asked whether people with intellectual disabilities are involved in decision-making, able to make complaints, raise concerns and access advocacy. More than 60 percent of respondents felt the country is stuck and still has a long way to go for both children and adults.
Yes, New Zealand is getting this right (3.6%)
No and it's getting worse (16.3%)
We are stuck and still not getting this right (46.5%)
Mostly we're heading in the right direction (33.6%)
Yes, New Zealand is getting this right (3.1%)
No and it's getting worse (15.6%)
We are stuck and still not getting this right (45.7%)
Mostly we're heading in the right direction (35.6%)
People told us:
• “Lots of questions can be confusing, and confuses me about what is the right call.” • “Mum and dad help give me ideas and then I can think what’s a good one to do.” • “My daughter has been actively taught at school how to voice her concern about things.” • “Our child will always need us/another adult to advocate for her. It would be good if New Zealand had a constitution/more robust means of protecting rights.”
• “It now feels as if we are ‘stuck’ in terms of getting to the next steps of true empowerment.” • "In reality, choices are getting more restricted as service providers are on such tight budgets." • “The Enabling Good Lives principles have helped with this.”
“Children with intellectual disabilities are probably the most invisible population in New Zealand.”
FAIR SYSTEMS
Children
Adults
Access to workable funding, support and services is not easy. A quarter of respondents told us that these systems are unfair to them - just over 40 percent feel the country is stuck on this.
Yes, New Zealand is getting this right (4.4%)
No and it's getting worse (27.77%)
We are stuck and still not getting this right (41.96%)
Mostly we're heading in the right direction (25.87%)
Yes, New Zealand is getting this right (3.1%)
No and it's getting worse (24.7%)
We are stuck and still not getting this right (43.4%)
Mostly we're heading in the right direction (28.8%)
People told us:
• “It’s very confusing. Help that is available seems to unfairly vary between regions. And often you have to 'hear about’ something your child qualifies for. • Lots of things are NOT easily found or heard about (in our experience). And services that are available are usually very over-subscribed with long, long waiting lists.” • “Now that my daughter is an adult it seems that a lot of the support has dried up. We are simply not seen any more now that the education system does not have to manage her.”
• “There is a culture of having to prove ‘how bad you are” to get services.” • “We use IF and it is the best thing ... He has a support person who is young to do sport practice and stuff with him and it’s really good, stuff kids his age do.” • “There is too much responsibility and pressure put on families to work it all out. The Government seems to be systematically withdrawing from taking responsibility for problems in the system.” • “There are so many departments, agencies, support groups and committees all with similar names and acronyms, that it is a minefield of confusion and gobbledegook.”
“We still expect people with disabilities and their families to navigate a maze of services, which are often incoherent and unfair.”