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Whilst reading through this list I couldn't help but think how we have managed. Some of the wishes were fulfilled several times over and yet others still remain distant. I think that over the past 10 years the life of a parent of a child with a disability is still complicated. We never really know what's waiting around the next corner.

What I do know is that we will continue to try and help as much as possible to alleviate some of the anxiety and stress. To continue to point people towards things that might help them on their journeys.

The HELP! Project

A web site for the parents and carers of special needs children.

Research

To seek the views of Parents, Voluntary Groups and Core Service Providers through Posters, Questionnaires and Meetings.

Some Comments

Statutory Sector

  • "The web site should be user friendly with carefully chosen symbols."
  • "the website should be useful for professionals as well as families."
  • "Provide a list of non-specialist groups who have an inclusion policy."
  • "Information on new policies and policy changes within Ealing."
  • "The web site would be very useful for deaf people."

Voluntary Sector

  • "The site should be managed by well-trained, friendly staff."
  • "How about having a question and answer service?"
  • "We must be careful that the service is not seen as elitist."
  • "Some parents will need access to computers and training."
  • "We need more respite provision for children with disabilities."
  • "Explain the role of all professionals."
  • "Explain how the referral process works for all services."
  • "Provide a fool proof guide to Health, Education and Social Services including alternative routes when a service has been refused."

Parents Questions

  • "I would like to able to communicate with other parents more often."
  • "Are there childminders for children with special needs?"
  • "I haven’t got a computer, I would like help to buy one."
  • "I would like to see lots of links with other relevant sites."
  • "I need more information on health and education."
  • "I would like information on other related sites."
  • "I need advice on behavioural problems and the lack of social interaction."
  • "I would like details of clubs and social events for young people."
  • "I would like to know about different support groups around the country."
  • "I would like help support and ideas related to LSAs."
  • "I would like to see information on legal issues such as Wills & Trusts."

Internet Use

  • Who uses the internet? 71%
  • Who does not use the internet? 29%
  • Who would like to use the internet? 29%
  • Who would like training on how to use the internet? 27%
  • Who would use a special needs web site? 96%

What parents want

  • Health 87%
  • Education 89%
  • Benefits 73%
  • Service available 71%
  • Respite Care 56%
  • Transport 42%
  • Children’s Section 45%
  • Counselling 58%

Quotes

“If only we’d know what we know now when we needed to know it”
“so that they don’t have to go through the same thing as I did”
“A comprehensive guide to local services for disabled children and their families”
“views and priorities of parents, carers and children and regularly gathered”

The Web site

  • How will people access the web site?
  • What about training?
  • How will it work?
  • Timing?
  • Budget?

Parameters

  • Not all households have a computer and in some cases although a computer is used regularly by the family it is not connected to the internet.
  • There are a number of people who have never used the internet
  • In such a diverse community as Ealing there are many parents/carers whose first language is not English

Summary

  • Parents need it and deserve it.
  • The voluntary groups realise the sense in enabling parents to help themselves whilst listening to what parents want. This will enable them in future to fulfil their statutory duty and plan comprehensive services for the future.
  • It provides Ealing with an opportunity to reflect back to special needs families their commitment to providing ‘needs led’ services within the borough.


Nick Radclyffe writing about Life at EalingHELP on 22 November 2016

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