Top Tips and Resources for Self-Advocacy

1. In Meetings

Preparation:

  • Read other people’s reports.
  • Send your views/report in plenty of time.
  • Gather your child’s views and share in advance. 
  • Dress smart
  • Bring the SEND Code of Practice and place it in front of you.
  • Make a list of what you wish to discuss and what you need.
  • Have notes that you refer to.
  • Arrive in plenty of time so you feel fully prepared and in control

Emotions:

  • Be firm with professionals but not unpleasant.
  • Be confident in your knowledge and authority, look people in the eye and smile.
  • Always praise professionals for what they are doing if appropriate.
  • Leave your uninvited guests behind; parents feel so many emotions- fury, despair, frustration but they can stop you being heard in meetings.
  • There are other safe places to share your emotions.
  • Ignore your negative thoughts and convert them into something positive that you want to achieve.
  • Keep your anger low and your ears open.

Setting the scene:

  • Make sure they call you by your name, not Mum/Dad etc.
  • Reference the professionals you have gained experience from to add weight to your knowledge.
  • Be prepared and know how to steer the conversation back to the important topics you want to cover.
  • Be aware that you don’t talk too much – need to listen.
  • Be articulate and accurate.
  • Try to use the child’s voice. Ask child to take part in meetings where possible. Empower them to use their voices and feedback afterwards what effect it had.
  • It is ok to step outside and compose yourself if you need to.
  • Make sure you appear to know everything about VI education even if you do not.
  • Mention the lawyer in your family even if you don’t have one.

Finding Support:

  • Speak to a parent of a child with something similar.
  • Don’t assume everything will be a fight. There are good professionals and people who do care about you and your child and really do want to help.
  • Know that any changes you make now will benefit future children.
  • Have someone with you at meetings, even if they don’t say anything, just there to support you. You can use VI charities to find someone, local SENDIAS offer this as well. Parent or friend but not someone who is going to antagonise.
  • Schools are unlikely to tell you what your child should be getting. Use charities and other parents to find out what support is available.
  • Hunt down all relevant charities who have the knowledge and expertise. They can help write reports and they have support groups etc.
  • Know you’re not alone.

2. In Education

Important things to remember:

  • Every child needs a specialist, VI TA with the knowledge and expertise to support your child’s needs. 
  • VI education is not about funding alone but about teamwork between professionals and parents.
  • Many parents, as well as the young people themselves, felt that teachers and other staff in schools did not always have a sufficient understanding of the nature and effects of visual impairment, which made them appear unsympathetic. Need to educate them to change this.

3. Self-Advocacy Principles

  • Believe in yourself – you are more powerful than you realise.
  • Know and understand your rights.
  • Learn all you can about your child’s disability, needs, strengths and weaknesses and be able to describe them.
  • Ask questions whenever you need clarification. But let professionals believe that you are very knowledgeable.
  • Remember that you are an equal partner in your child’s education.
  • Let people know that you intend to resolve issues. Be a central part of all decision making.
  • Finding solutions feels so much easier than stating all the issues.
  • Use the compliment sandwich- acknowledging something they are getting right before you criticise and then complement again
  • You are the expert for your child.
  • Practise how to approach, explain and negotiate adaptations and needs.
  • Know what resources are available and how they can be used.
  • Know who the key people are. Find the right person with whom to talk and try all avenues.
  • Keep a copy of all written communication and emails.
  • Praise and thank people when appropriate.
  • Be effective on the phone. Be very precise and don’t discuss unimportant issues.
  • The voice of every parent matters.

4. Golden Rules

  1. Don’t tell the SENCO how bad everything is, (remember compliment sandwich)
  2. Don’t tell professionals that you feel very low and are not coping.
  3. Don’t cry in front of professionals unless absolutely necessary, make sure you have your emergency make-up with you.
  4. Don’t argue with professionals or use strong language, they will stop listening.
  5. Don’t send angry emails late at night, share those with your friends.
  6. Don’t let your anger out on professionals.
  7. Don’t jump the chain of power unless absolutely necessary.

5. Jane’s Lessons

  • There are some people you encounter who will block no matter what you say. Try and go round them.
  • You will be labelled a difficult parent at times, be proud of that because it means your voice is strong.
  • Sometimes decisions are made that you do not agree with. 
  • State your case and make sure if things go wrong, you log it and report back.
  • You can hold people to account.
  • You can change settings / advisory teachers/ support if they are not meeting your child’s needs.
  • Your Responsibilities as a parent are like a driver:
  • To keep your passenger safe
  • To ensure they help plan the route and can take over one day.
  • SEND law = highway code, use it to your advantage
  • Stay calm and in control as much as possible.
  • Road rage doesn’t help.
  • Your child’s views as well as your own should be listened to and at the heart of any decision about provision. Make sure their views are gathered by someone who they can trust separate from you and the school / setting.
  • Use phrases like “how can we work together to move this forward.”
  • Be willing to compromise and try a variety of routes to get your child what they need.
  • Be realistic about your expectations for meetings- small steps for success.
  • You have the right under SEND law to Ask for help, Seek support and Know what is happening to your child.

Inspirational VI content creators

Hi parents and children of the lovely VI community. I really enjoyed coming to the event hosted by Jane and the rest of the LOOK team and learning about your individual tips and tricks as well as your unique life stories. We all have something to share whether this is a really memorable moment or a struggle that was monumental and you are exceptionally proud of yourself.  I understand that a lot of parents are interested in learning about my advocacy techniques.  

As many of you are aware  we live in a world that is not made for us, like a square peg in a round hole. As a result, it is important to educate people who may have had little or no  experience with disability, in our case this is visual impairment.  Part of educating people is to be very specific about  your needs and going back to basics if people do not understand your situation clearly.   For example if you require assistive technology in your workplace or educational setting, it is important that you disclose this information to your designated  department leader.  You may not need to do this all the time but it can be handy in case suspicions are aroused!  If a theoretical explanation does not work then demonstrate this and describe what you are doing. This is just a general example but you can apply this with any access requirement. 

There are a lot of content creators  trawling the  internet who are visually impaired  and who helped me  with some of the tips and tricks especially when educating the able bodied environment. I will link the channels of some I know  in this document. 

Unsightly Opinions – YouTube

https://www.youtube.com › unsightlyopinions

The Blind Life is a representation of what is going on in my life and what I enjoy, all from the Visually Impaired perspective. I enjoy sharing tips and tricks of navigating life with Low Vision, but I absolutely love showing all the new assistive technology that can help make our lives awesome!

The Blind Life

Carrie On Accessibility

Sharing the technology, tips, and encouragement for those who are blind and visually impaired to live the best life they want.

Lucy Edwards: Blind British YouTuber and Presenter

https://www.lucyedwards.com

All the links of the people I  have provided are totally blind or have some residual vision but they are all about positivity and showing that it is absolutely possible to stand up for yourself and that your visual impairment should not be taken for granted. 

In the links I have provided  there are practical demonstrations shown to you so you can get a verbal idea of what I am trying to explain.

Never feel that you are alone when advocating for yourself even though the able bodied people empower us with the best of intentions . If you have an assistant with you, ask them to help you when explaining something because they can phrase certain things in a way that you may find difficult. For example if you need information provided in an accessible format. 

These are some of the strategies I can think of personally. 

If there is a particular area that you feel I can help please do not hesitate and contact Jane  and we can meet over zoom.

Best wishes, 

Aliza (LOOK Mentor and advocate)