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Growing up
Many blind or deafblind adults and adults with low vision live fully independent lives, get married, have families, compete internationally in sport and work in all types of jobs and careers.
Technology is increasingly making it easier to communicate and get about safely and independently—thanks to advances in screen reading and computer software. Building law means cities and buildings are becoming more accessible for everybody. Employment law means employers have to be responsive to the needs of employees with disabilities, including people who are blind, deafblind or have low vision.
Planning to go to university or finding a job takes time.
Ask your teen’s vision team to talk to the Blind Foundation in your child’s last year of school to plan ahead and discuss the options.
Call the Blind Foundation on: 0800-243 333.
“Our daughter’s talking about teaching as a career—and she would be amazing. She’s also thinking about writing, composing music. I can see her on the world stage, actually.”
Parent
Leaving school
Leaving school is an important step for all young people. It can be both exciting and challenging and is usually more successful with some planning and forethought.
Talk to your teen’s vision team about how you want to do this.
You may want to develop a plan to help them make the transition from school to adult life as easy as possible.
You may also want to involve a broader range of people than you usually do. For example, you might want to plan with:
- your teen
- their friends and family friends
- you and your family or whānau
- the school
- BLENNZ
- Blind Foundation
- specialists from the Ministry of Education
- Ngāti popō O Aotearoa national field coordinators
- representatives from community service providers or other government organisations.
Talk to your teen’s vision team about what to include in the transition plan.
Often they feature:
- a young person’s goals
- how they will achieve those goals
- what support they will need for employment, study, financial independence, taking part in community activities and groups, cultural support, leisure activities, living arrangements, mobility, transport, peer relationships, sexuality and self-esteem
- what happens with any equipment your child uses at school and what equipment they may need when they leave school and go on to work or further study.
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Planning for change
By now, you and your child’s vision team will be experienced at planning for change. You will know a lot about what works well and what is not so good.
“Planning for life after secondary school is so important for all kids—yes, we may be blind or deafblind, but we deserve a life, we have goals and there’s plenty we can do. With an open-minded society, the options are endless.”
Deafblind adult
“Preparing for your child to leave home isn’t straight forward. Everyone transitions the child, but no one really transitions their parents.”
Parent
Here is a list of things you and your child’s vision team might want to consider, alongside the things you’ve already got sorted.
- Plan early to give you time to set up the right support and for your child to learn the new skills they might need when they leave school.
- Identify what training and skills they want to develop.
- Think about the emotional and practical support that they may need from others. Think about your needs too.
- Consider who will act as liaison, information and advocacy people for you and your child. This means that when they finish school, there are people they know (and you know) who are familiar to them and familiar with what they need.
- Update the plan (or make it more specific) as your child gets closer to the end of school.
- Talk to your child’s Resource Teacher: Vision to find out what will happen to their assistive technology when they leave school.
- Encourage your child to lead the process, wherever possible, with your support (they know their own dreams and aspirations and will be more likely to achieve them if they have a say in what happens).
- Encourage your child to identify their interests, strengths and challenges in achieving their goals—and build on those strengths and interests.
- Identify someone from the Blind Foundation to be available and in touch with your child as your child is leaving school—having a familiar support person for the first few months can make all the difference to their confidence and ability to cope with change (and possibly to yours as well).
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My Story: Parent group makes shy mum ten foot tall and bullet proof
Before daughter Katelyn came along, Oamaru parent Pat Fox reckons she was really, really shy.
“I was. I truly was. But then Katelyn was born with very complex needs and I had to come out of my shell. I was terrified to start with. But I had to stand up for her. I had to become her advocate,” she says.
Katelyn was born six weeks early. At 17 months old, she had brain surgery to stop continuous epilepsy, lost her vision and speech and developed cerebral palsy. After surgery, Katelyn was given a 50 percent chance of survival.
Looking back, Pat says those early days were devastating as a new parent and simply a matter of getting through each day.
“It was the stuff of nightmares. But my husband Steve and I got through it. And look at the result we have. Katelyn left high school last year and is now living in an IHC residential home. It’s been quite the journey.”
Pat says meeting other parents through an organisation called Parents of Vision Impaired (PVI) was the turning point for her—and the thing that drew her out of her shell.
“My husband and I promised each other, when Katelyn came home from hospital, we would give her the best life we could in the time we had her. PVI helped us achieve that.”
Pat heard about the national parent group by chance.
“I was so overwhelmed by information in those early days I can’t exactly remember how I came across them. But I did. And I remember really wanting to go to one of their conferences in Auckland.
“Being shy, I thought, I’ll go. But I’ll hide at meal times and keep out of people’s way.”
But that’s not how things panned out.
Instead Pat immediately connected with people at the conference because they were parents just like her.
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“It was amazing. I realised I wasn’t alone. I wasn’t judged either. I realised we were in this together. By the time I got home. I felt ten feet tall and bullet proof.”
Pat went on to become board member, then chairman of PVI, positions she held for several years.
“Through PVI’s training programmes, I gained a lot of skills and knowledge and felt empowered to help and support others to do the same.”
These days Pat is extremely knowledgeable about the workings of the health and education systems, the funding and services available to children who are blind and have complex needs and expert in the innovative teaching practices that work for children like Katelyn.
Along the way, she picked up some valuable tips for parents, which she still shares with new PVI members today.
“I tell parents you are your child’s best advocate. Your job is to ensure your child gets the best education and opportunities available. Never let go of that. You have the right to ask questions, to challenge decisions, to get answers and to be heard.”
“I let them know that I’ve personally experienced the good, the bad and the ugly. I tell them I’ve also experienced some truly innovative solutions from some talented people in education.
“And I’m honest when I say, this journey, well, I wouldn’t have missed it for the world. I never anticipated there would be times when it is fun and exhilarating and that I’d grow so much as a person. If someone told me that at the start, I’d have thought they were completely bonkers.”
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Socialising and developing life skills
Hanging out with friends, having fun and taking part in recreation are important goals for all children and young people. Your child will be no exception. That is why it is important your child gets the chance to develop the self-confidence and life skills they need to socialise and participate.
“Sometimes asking for help can be the hardest thing in the world to learn. But you need to, particularly when you get older and want to leave home; that’s my experience. I’ve done it and I’ve found people want you to succeed and they like to be part of your journey.”
Blind adult
The Blind Foundation runs a programme aimed at teens called the TRACKS programme.
It helps with:
- daily living—new skills and improved abilities
- pre-employment—time management, decision-making, connections and leadership
- personal and social development—teamwork, confidence, achievement, enjoyment and wider horizons
- participation in recreation events.
For more information, talk to your child’s vision team or contact the Blind Foundation on 0800-243 333 or children@blindfoundation.org.nz.
Talk to your child’s vision team about any other programmes and support available and what you can do to support your child to develop life skills at home.
Tips on developing life skills
- Set aside time to have regular conversations about what adult life is like and what it involves.
- Involve your teen wherever possible in your everyday activities such as budgeting, planning meals, preparing for work and keeping receipts of expenses. Talk to your child’s vision team for additional support if you need it.
- Give your child responsibility for daily tasks such as cooking and cleaning and opportunities to make real-life decisions.
- Look at the different options for living away from home such as flatting and group or community homes (if your child has other disabilities) and visit these types of places to see how things work.
- Talk about sexuality—contact the Blind Foundation for ideas and advice if you need it.
Roles for people close to your child
Here’s a list of the roles that people in your child’s life could play. Talk to your child’s vision team for more ideas and to set these opportunities up at home or at school.
- Lead the development of a transition or career plan for your child.
- Include life skills in the classroom programme.
- Monitor your child’s transition or career plan.
- Provide careers advice and support through a careers advisor.
- Help your child put a CV together.
- Provide work experience programmes and opportunities to try out tertiary courses.
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Going to uni or polytech
Finding the right tertiary course can be challenging. A good place to start is by identifying your child’s academic aspirations and particular strengths. Then, sit down with your child’s vision team to narrow the list of potential courses in other ways.
- Location—does your child want to be close to home or do they want the challenge of travelling to study?
- Size—some courses have large classes and little interaction with tutors, others are smaller and more intimate. What would your child prefer?
- Atmosphere—some tertiary institutions and courses are known for their friendliness. Ask current students or graduates about the atmosphere and how well they feel they’re supported.
Your child’s school might have a transition programme that allows their students to try courses at tertiary institutions. By trying a course, your child might have a better idea about whether it’s a good choice for them.
“My advice is to encourage your child to try things out before they leave school. Get them involved in work experience. Let them meet employers and work alongside other people. Give them a real-world experience. These kids want to work, pay their taxes and make a living like everyone else.”
Deafblind adult
Contact and support
You and your child’s vision team might also want to talk to people in the tertiary education sector to find out more about what they offer to young people who are blind, deafblind or have low vision.
Here are some ideas of who to contact.
- All tertiary providers have a contact person or service for people with disabilities. Contact the provider and ask for this person’s details.
- Study Link can help with student loans and allowances.
- Work and Income can provide you with information about Training Incentive Allowances and other allowances.
- The Tertiary Education Commission funds a number of schemes to help young people who leave school with no or low qualifications. These include the Youth Guarantee Scheme, the Youth Training Scheme and Training Opportunities programmes.
- Workbridge provides funding for training support and supports people with disabilities to find employment (provided they meet certain eligibility criteria).
- Contact the Blind Foundation early in your planning. They can offer:
- equipment assessment and training services, tailored for the tertiary education sector
- help to apply for funding to meet disability-related costs and pay for equipment.
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Getting a job
Your child may prefer to leave school and get a job. If so, you may want to talk to your vision team about contacting the following agencies for advice and support.
- The Blind Foundation offers:
- information and advice related to applying for work, getting ready for work (e.g., by preparing a CV, writing cover letters, approaching employers and so on)
- equipment assessment and training service, tailored for the workplace
- help to apply for equipment that meets disability-related needs.
- Workbridge can help your child find work, write their CV, and access equipment and support related to their disability (provided they meet the Workbridge criteria).
- Careers New Zealand provides career information advice and services at school and outside of school.
- Work and Income provides a service in some areas called PATHS—Providing Access to Health Solutions. This provides extra health assistance to people who receive a sickness benefit and want to find work. Contact your local office to see if it is available in your area.
Agencies, called supported employment agencies, are another good option. They are located throughout
New Zealand and are funded to help people with disabilities find meaningful paid employment. The Blind Foundation is a supported employment agency.
They provide:
- career planning, job matching and training, work experience and other support such as transport
- help with accessing equipment, property modifications, transport and other support related to your child’s disability
- employment advocacy
- support to access funding for post-school courses, training and study.
Local agencies are listed on the website of the Association for Supported Employment in New Zealand. For more information, you or your child’s vision team may want to check out their website.
Go to the Association for Supported Employment in New Zealand website.
“I’m excited about the future for my daughter. She’s amazing and I can see her doing anything she sets her mind to.”
Parent
The Blind Foundation provides advice on accessible signage and making workplaces accessible for employees who are blind or visually impaired.
Talk to one of the Blind Foundation’s environmental awareness advisors for more information.
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Settling into a job
Not all employers will know exactly what your child needs to settle into a job, feel welcome and have access to all parts of the buildings and premises they work in. This is where the Blind Foundation can help.
The Blind Foundation offers a range of advice and consultancy services to New Zealand employers who employ people who are blind, deafblind or vision impaired.
- Environmental design—advice on the physical environment or space to make sure it is safe and accessible and set up to ensure an employee can complete their role. This service includes advice on lighting, glare management, signage and finding their way around buildings and surrounds.
- Website accessibility—advice on making sure a company website is accessible, useable and meets New Zealand’s standards for web accessibility.
- Document accessibility—same as above, except for documents and publications.
- Presentations and awareness training for teams and employers who work with and employ people who are blind, deafblind or have low vision.
- Corporate partnership advice—advice on partnering with a credible charity, volunteering and employing people who are blind, deafblind or have low vision.
Finding a place to live
As part of your planning, you and your teen’s vision team will also need to think about where your child wants to live.
Set some time aside to discuss living with other people. Is it important to be handy to local transport? What about local health and support services?
Some of your choices will include:
- living at home (household rules and responsibilities can still give your child some independence)
- living in a house (this has maintenance responsibilities but there is often more living space and freedom to make alterations)
- living in a rental property (there are fewer maintenance responsibilities but less freedom to make alterations)
- Housing New Zealand accommodation
- group or community homes (where small groups of people with disabilities live together in the community and the home is managed by a community organisation).
Talk to your Resource Teacher: Vision about Kickstart. The Kickstart programme is a BLENNZ programme that provides an opportunity for young adults who are blind or low vision to live in a supported flatting situation as they make the transition to tertiary, the workplace or independent living.
The programme takes a holistic view focusing on living and working as a member of a team. A senior teacher, teacher and two adaptive daily living instructors work closely with the students to support the development of individual goals and achievement.
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My Story: Growing up with low vision—Mary’s story
“I was very much an ordinary kid, growing up. I enjoyed school, did well academically and had some good friends—one I’m still close friends with.”
Mary
At 21, Mary Fisher has clocked up a few impressive achievements.
She’s swum in the 2012 Paralympics, winning a gold medal in world record time. She’s become a Member of the New Zealand Order of Merit (for services to swimming). In 2013, she was named finalist in the Attitude Award for Sport Performer of the Year. Right now, she is studying part-time towards a Bachelor of Science at Massey University, while training for the Pan Pacific Swimming Championships.
Mary was born with low vision and gradually lost it in her teens due to congenital eye condition aniridia (no irises). In 2014, she started working for Parents of Vision Impaired as a family support worker.
Here she reflects on her experiences growing up with low vision.
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What are some of your early memories of school?
I was very much an ordinary kid, growing up. I enjoyed school, did well academically and had some good friends—one I’m still close friends with. My earliest memory of what happened in class is my first teacher showing us what different letters looked like by using pencil on paper. I remember worrying because I couldn’t see the shapes. I asked where the letters were and she cottoned on and ended up writing the letters on paper with a vivid marker, which I could see. Things like that were important to me. They helped me keep up and not be singled out.
What would you say to your teachers now?
I’d say that the times they spoke in concrete terms about what was going on in the classroom and were able to verbalise everything worked really well. Teachers should do this more—and they probably do a lot more these days. Teachers need to have high, but realistic, expectations of kids who are blind or have low vision. Let them explore at their own pace. Don’t smother them. Give them opportunities to socialise and have experiences like playing sport and learning music. I’d also say it’s important to teach kids how to ask for help when they need it. Sometimes I think I was a bit afraid of asking for things growing up in case I inconvenienced people or was going to look like the “needy” kid.
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What advice would you have for blind or low vision kids wanting to make friends at school?
I’d say not to worry too much about fitting into a particular group. Choose subjects and try things that you enjoy and that interest you and let friendships develop naturally from those interests.
Do you use braille and, if so, why?
I do. I learnt braille from my Resource Teacher: Vision when I was 15 because my sight was deteriorating and I’d get so tired reading large print and was really slow.
I thought I’d pick it up quickly. But it takes time and patience and you’ve got to practise to become fluent. I’ve a few totally blind friends who read braille and they encouraged me. I’m still not as fast as them, but it is very useful for making lists or reading numbers in lifts etc. I think it comes down to doing a little bit each day.
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You’ve left the family home in the suburbs for life among friends in the city. Tell us about that.
I moved out of our home in Silverstream to be closer to the Kilbirnie pool where I train every day. It was a huge step. I love it. At the moment there are eight of us living together. I only knew one of my flatmates before we moved in. But we all get on well. We each cook for the others once a week (the person who’s not cooking that week puts the rubbish out) and we go shopping together. They help me out and I do the same for them. We all contribute to the decisions of the house, which I like. I think the key is to find the environment that is going to work best for you.
How do you get on with using public transport in Wellington?
It’s good. I use the bus system lots and the train to visit my parents. With the help of an orientation and mobility instructor, I’ve memorised my main routes and become much better at asking for help when I need it. Sometimes I ask the driver if I’m on the right bus or when the stop is coming up. I’ve learnt that things like that, which originally can seem like losing some autonomy, actually mean you can get out there, enjoy life and enjoy your independence.
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Support from government agencies
Other government agencies you may like to contact about the employment and accommodation funding available include Ministry of Social Development (including Work and Income) and the Ministry of Health’s Disability Support Services.
Work and Income
Work and Income can provide you and your child with advice about the following support.
- Disability Allowance—a payment that helps with the costs related to an ongoing disability.
- Jobseeker Support Payment—a temporary payment paid while someone is looking for work, in training or unable to work because of a health condition or disability.
- Supported Living Payment—payment for people who are permanently and severely restricted in the ability to work because of a health condition or disability.
- Accommodation Supplement—help with accommodation costs.
- Training Incentive Allowance—help with employment-related training costs.
Ministry of Social Development
The Vocational Services Transition Service is funded by the Ministry of Social Development. It assists all school leavers with high and very high needs who receive ORS funding to transition from school.
You should receive information about this service before your child leaves school (the service will begin the year before your son or daughter leaves school). Discuss the information with your child’s vision team.
The Youth Transition Scheme, contracted out to community providers by the Ministry of Social Development, is available to all young people who have left school and who need extra support and encouragement to enter into employment or further training or education.
Ministry of Health
The Ministry of Health’s Needs Assessment and Service Coordination (NASC) service is available to look at the needs of a young person and identify the disability support services best suited to meet their adult needs.
The Ministry’s household management and personal care services help young people with a range of daily tasks such as preparing meals, house cleaning, showering and getting dressed.
Talk to someone in your child’s vision team or visit the Ministry of Health’s website to find out more about NASC service.
Go to Needs Assessment and Service Coordination services
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Making a complaint
Things don’t always go smoothly in life and there may be a time when you or your child wants to complain about unfair treatment or discrimination.
The Human Rights Commission offers a free, confidential service for members of the public with human rights enquiries and complaints of unlawful discrimination.
The Commission’s dispute resolution process is limited to unlawful discrimination complaints. However, the Commission also addresses broader human rights issues related to disability, housing, education, detention, employment and race relations.
Freephone 0800-496 877
Visit the Human Rights Commission website
“Handing over your child to life can present lots of challenges—for me, I was left thinking who am I now, now that I’m not so-and-so’s mum? What skills have I got after all these years? That’s when parent groups can be an enormous help.”
Parent
Looking to the future
Having a child leave home, become independent and join the adult world is a big step in any parent’s life. You may feel excited about your child’s future. You may feel anxious about how they will cope without the vision team they’ve had in place for so long. You may even find yourself thinking, “What about me? What am I going to do now?”
This can be a good time to reconnect with other parents going through a similar life change for help and support. Talking to the Blind Foundation about their counselling services is another good option. You may simply want to reach out to your wider family and whānau. Whatever your choice, it’s worthwhile giving yourself time to reflect and think about what the future has in store for you.
Other support services
You might also want to contact the following organisations for advice and support.
Blind Foundation (0800-243 333)
Parents of Vision Impaired (0800-312 019)
Kāpō Māori Aotearoa New Zealand Inc (0800-770 990)
Parent2Parent (0508-236 236)
Deafblind (NZ) Incorporated (www.deafblindnz.org.nz)
The Ministry of Health provides a range of disability support services through the Needs Assessment and Service Coordination (NASC) service. One service is Supported Living, which supports disabled people to live as independently as possible in their own home.
It is available to anyone aged 17 or older who is assessed as meeting the Ministry’s Disability Support Services eligibility criteria.
For more information, visit the Ministry of Health website (search using the terms “supported living”).
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