Top Tips for Parents or Carers of Children with Special Needs
As a parent or carer of a child with special needs, you will no doubt find yourself attending many meetings relating to medical and educational issues. Before these appointments, many parents feel unprepared or feel that they have a lack of control about what is going on, which can lead to anxiety and frustration. Feeling like this can minimise the benefit that these important meetings have and so the following suggestions are designed to boost confidence and lead to a more productive encounter.
It is essential that you keep all documents for future reference.
•Buy a ring binder in which you can keep any reports you receive. Sharing knowledge of your child’s health may be important so you need to have the information to hand.
•Insert a calendar at the front of the folder for marking things like medical appointments, medication and periods of illness.
•Have a second binder for educational issues such as Individual Education Programmes (IEPs), home visit reports and reports from agencies such as Occupational Health, Physiotherapy and the Sensory Support Service
•If possible, keep an on-going diary that is an overview of all issues.
•Keep these files in an accessible place so they can be updated easily.
•Include a ‘Questions’ page at the front of the file so you can jot down any questions as they arise. This will serve as a reminder of what you want to ask when you next go to an appointment/meeting.
•Always request that you receive copies of documents or reports from doctors and therapy providers. It is not uncommon to have to chase these up, so be persistent because it is essential that you have a record of what is going on with your child.
•Make sure you receive updated IEPs and school reports so that you can monitor your child’s progress.
•Ask school when you can expect things like IEPs, reports and parents meetings so that you know when these things are due.
•When necessary, request a meeting with your child’s teacher or SENCo so that you can share relevant information that schools will need in order to update or modify any programmes of work or support plans.
•Look into what is offered from support groups in your area. They may have ideas that will help parents and carers as well as your child.
•Find out about any grants that may be available.
•Take your Medical and/or Education file with you when you go to a meeting so you always have the information you may need to refer to.
•If you have been compiling a list of questions, remember to take it with you to any meeting.
•Take a notepad and pen with you to any meeting so you can jot down any notes and write reminders of things that you will need to follow up.
•If possible take someone with you to meetings. It’s a good idea to have someone there for support and to talk things through afterwards. They may also remember things that were said that you missed.
Medical and educational meetings can be very overwhelming, but they are also essential. Through good organisation and thorough preparation, we can maximise their usefulness to the full. Finally, remember to keep notes, because no doubt you will need to refer back to what happened at these meetings at some stage in the future; it is so easy to forget details.
Hopefully these suggestions will help you, the parents and carers, to feel more in control and support you in your role as advocate for your children. If any of you have any helpful tips you would like to pass on to other parents, we would love to hear from you.
BBS Mum and SENCo
/LMBBS/file/IPSEA EHC plan checklist(3).pdf If you are filling in the HEC Plans this is a great checklist to help you.
This link will take you to the government website that has all the main documents to support families with children/YP that have medical needs/and/or special educational needs.
The third document link on the website takes you to the new government guidance for a multitude of things, including the new Disability Code of Practice and Early Years guidance. This is a good starting point.
Independent Parental Special Education Advice (known as IPSEA) is a registered charity (number 327691). IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs (SEN) and disabilities.
The Information, Advice and Support Services Network (IASS Network) supports and promotes the work of Information, Advice and Support (IAS) Services across England. They are based at the Council for Disabled Children.
IAS Services have a duty to provide information, advice and support to disabled children and young people, and those with SEN, and their parents. They are a statutory service which mean there has to be one in every local authority.
Parent Partnership - Just Google Parent Partnership and you will find your local team.
Parent partnership gives free information, advice and support to parents of children with Special Educational Needs enabling parents to make informed decisions.
A series of leaflets explaining important changes to the SEN and disability support system, for children and young people. These changes start on 1 September 2014. The leaflets cover the following areas: making decisions about your support; the local offer; education, health and care (EHC) plans; post-16 options for support.
SENCAN Sensory Specialism 118KB
Information on visual conditions for parents and teachers - Bardet-Biedl-Syndrome