Parent power: What families can do to secure the support their children need

All parents of deafblind children have a story to tell about their journey to get the right support for their children.  Last week I spoke to Elaine, whose 16 year old son has never received specialist support for his deafblindness and had his first Deafblind Guidance assessment only a few weeks ago.  Another parent told me about the long dispute she had to go through because her local authority started to question the need for support from an MSI teacher for her daughter. The struggle can be time consuming and sometimes overwhelming.  And sadly it may not even have a happy ending, leaving some parents feeling isolated, frustrated and powerless.

Parents often struggle to get the support they need for their children, despite the fact that there are legal rights in place to protect them.  The Deafblind Guidance was reissued in December last year and states that all deafblind children must be identified and assessed by someone who is trained and experienced in deafblindness.  Following an assessment, deafblind children should receive support, including one-to-one support they need to fulfil their potential.  In addition to this, the reforms to the system of Special Educational Needs and Disabilities (SEND) introduced through the Children and Families Act 2014 requires all agencies to work together to achieve better outcomes for children, and to listen to parents when making decisions about services.

To get the most out of the Deafblind Guidance and the new legislation it is important that parents stand up for their rights and make their voices heard.

If you are the parent of a deafblind child, here are some things you can do:

  1. Know your rights – Learn how to navigate the SEND system and make it work to your advantage.  Read Sense’s Guide to SEND reform to learn how to make the new system work for you.
  2. Influence your Local Offer – Under the new legislation, each local authority must publish a Local Offer which sets out all the services it expects to be available to children and young people with SEND.  For deafblind children this should include services like specialist assessments, support from specialist teachers, intervenors and mobility training.  However, our research shows that very few local authorities include these services.  We are running a Local Offer for deafblind children campaign to make sure they do.  Fill in our survey to let us know what you think.  This will not only help other parents to find out that these services exist, but will let local authority know which services are valued by parents.
  3. Talk to your local decision-makers –  Make sure the people in your local authority who make strategic decisions about which services to commission know about the unique needs of deafblind children.  Local authorities will have less money to spend in the future and will inevitably have to make difficult choices.  That’s why it is crucial now to raise awareness about the needs of deafblind children and about the impact the right support can have on their lives.

There are lots of parents all over the country fighting for better future for their deafblind children.  A few months ago a group of parents in Devon told senior managers responsible for deafblind children why they thought it was wrong for deafblind children not to have a specialist assessment and right support.  Those managers listened to them and made changes to the way they support deafblind children. Jane, who ran this campaign, shared her story in a oldblog about parent power.

We should never underestimate the power of parents.  The Public Policy team in Sense are keen to support any parents who would like to campaign for specialist services locally.  If you feel empowered and would like to start your local campaign or want to connect with other parents who campaign with us, please do email me.

Svetlana Kotova is Policy and Campaigns Advisor for Sense.



Author: Svetlana Kotova

Policy Advisor (Welfare Benefits & Employment) for Sense Public Policy

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