11 March 2013 in Westminster, London

The Government is currently seeking to make big changes to the way in which support for children with special educational needs and disabilities will be planned and delivered across the country. The Children and Families Bill, which is currently being discussed in Parliament, will implement these changes.

Sense is campaigning to ensure that the new system meets the needs of deafblind children and their families. This event, which was attended by several families who use Sense services, will help us understand the possible impact of the proposed changes on families. Officials from the Department for Education Special Needs and Disability Division also attended, giving them the opportunity to speak to families and learn from their experiences first hand.

You can read more about the event in this report which summarises the views shared by families throughout the day.

Survey

Sense is keen to hear from as many deafblind children, young people and their families as possible, in order to expand upon the discussions at the event. We'd be grateful if you could fill in our short survey.

Video clips

Parents and deafblind people speak about their experiences and concerns for the future.

Rob Henderson

Transcript

Question: So, what do you think about the plans to introduce education, health and care plans in place of statements of special educational needs? 
Rob Henderson: I think as a concept it's a really good idea, because there are problems with the statement system. From our own experience, I think one of the things that we would hesitate about is whether or not the single assessment could work for someone like our daughter whose got very complex needs. Because, who do you ask to do the assessment and where would it be done, how do you make this happen? We’ve got some experience of when we lived in Oxford, they had a paediatric assessment centre where they brought lots of random health experts together in one place to assess Hannah and that was a good exercise, but nevertheless the reality was that most of them were unfamiliar with Hannah’s syndrome so a lot of time was spend educating them.

Transcript​

So that was a mixed experience. I think that's a problem. We've ended up travelling the country going to Birmingham to find an endocrinologist and psychiatrists with relevant experience are fairly few and far between. So it seems to me that to actually provide a single assessment locally is going to be difficult for a syndrome like the one that Hannah has. So probably you'd need to have a sort of national assessment centre or perhaps a regional one, maybe a few dotted around the country, that might work. So I think the concept is good, but making it work in practice is going to be challenging locally, because of the availability of the right people with the right skills and experience.
 

Jackie Spigel

Transcript​

I'm a parent carer of a deafblind young lady who is 22, and she is currently in residential care in Manchester. I'm also a parent participation officer for a charity in a pathfinder borough, and in our pathfinder borough, the London Borough of Lewisham, we are involved as a forum, a group of parents getting together with the local authority to look at what this education, health and care plan means. And one of the things that comes up regularly is eligibility. "Will I be entitled to one of those EHC plans when my statement goes?" is the big anxiety for so many parents. "What is statutory? I have a piece of paper at the moment which tells me what my rights are for my child. Will I have one when I have the EHC plan, and who will be assessing." So that's one of the big concerns that comes through.
 

Flo Njeru

Transcript​

So we're going to talk about what difference specialist support has made to my daughter. It's made all the difference in the world because generic support services would not understand the impact of deafblindness. It has to be people who are specifically trained in issues to do with deafblindness, and somebody put it very well actually in saying that the overall impact of deafblindness is not deafness plus blindness but deafness times blindness, so the issues that are pertinent to that can only be understood by a specialist in that particular area. iin relation to my daughter, it's made a difference in ensuring that she has specific educational provision that meets her needs. Without that input she would not have got that, and it continues to be so that we have a multi-sensory impairment teacher from Sense, who ensures she's been to my daughter's new school, providing training to the staff members there, so that they understand what impacts on my daughter, what makes her learning difficult, what can make it easier for her, what breaks she needs to have, and what additional support services there needs to be. So yes I would say that specialist provision is very, very important, otherwise the child's needs are not met.
 

Caroline Potter with Steve Rose, Sense's Head of Children's Specialist Services

Transcript​

Transcript​

Steve: What about telling everyone about your experiences today here?
Caroline: I was talking to everyone about my future, about doing things in the future.
Steve: Great, thank you.
 

Nicky Cowell

Transcript​

So I actually found the day very useful. I actually felt quite silly because there were a lot of things that were brought out that I knew nothing about, ie. pathfinder. Several things really, so I learnt a lot from today. Hopefully I’ve put a few points across. Things I would like to see changed or put into place being a parent of a special needs child, it’s very very difficult, very demanding. It’s just nice to know that there is a little bit of support there to help us.
 

Ashling Barve

Transcript​

We're very happy about the local offer element of the Bill. I think it would help us a lot to have some clarity as to what services are going to be available to us for our child. More importantly, we would really like to see something included in the local offer that would mention intervenors. Our children can't really....support services won't be available to them unless we're actually using specialist workers like intervenors for them, and that would be exceptional for us to have that within the local offer.