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Parent Carer Resources (UK)

Discussion in 'Parents' started by SockFiddler, Jun 28, 2017.

  1. SockFiddler

    SockFiddler Type 2 · Well-Known Member

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    So the bomb has dropped and the diagnosis has arrived, and it's horrifying. Your life is upside-down, your child's health, happiness and future seems suddenly cloudy, you're emotional, exhausted and lost. Your friends don't know what to say, your family is hovering helpless on the sidelines, you're being bombarded with medical terms, abbreviations, equipment and information. And all you can think is "I just can't handle this, I'm going to fail."

    You're absolutely not alone.

    This is an attempt to surmise what you need to know right now, today, tomorrow and next week as well as to arm you with resources that will help you overcome common hurdles, answer questions and tackle legal obstacles. But first, some hard truths:

    Your child has been diagnosed with a condition that is legally recognised as a disability (Equality Act). That's a term enshrined in law and means something very specific. What it is not is a prediction of things to come. It does not mean that your child is instantly marginalised, or will have worse outcomes than non-disabled kids, or anything else. It's simply a word that has legal and statutory implications. Get used to this word - it will become your primary weapon.

    You're a parent carer now. And that's going to take some getting used to. It's a term whose legal recognition has been hard-won by parents of disabled children over the last 20 or so years and emphasises our double roles in our children's lives. We are both parent - hugger, game-maker, vegetable enforcer, bath runner, toy purchaser, story reader in chief but, also, now our child's primary health provider. Take a moment to absorb that - it's another bomb.

    The term "Parent Carer" is used to ensure our needs (as carers of people who require more support than their peers) are met in the same way that other carers - Young Carers, Elderly Carers, Spousal Carers etc - are. But, also, it gives legal weight to the argument against the viewpoint that we'd be caring for our children anyway - we're their parents. Well, yes, but do you know how many other parents can clean a trachy in the dark at 3am or give a full-bodied, evidence-based lecture on how human beings actually have 7 senses and how each one can go wrong? None, that's how many (unless it's their field of specialism and then they get paid). We have to know more, do more, think more, learn more, react to more, deal with more than parents of non-disabled children - therefore we are their carers.


    Here's another bomb, before I start listing resources and explaining stuff for you: you're going to get good at this. Like, freakishly good at this. There's going to come a time when you can't imagine life being any other way. There's going to come a time when you see someone in the place where you are now and confidently reach out to help them.

    Here's how. Get informed, get networked, give yourself a break.

    Here's a list of reliable, reputable sources of information and what they can offer you. It's a parent carer buffet!

    1. Your local Parent Carer Participation Forum

    These forums, funded by the government, supported now by a legal requirement for local authorities to consult with parent carers (Children and Families Act), run by parents of children with a whole range of disabilities (almost exclusively on a voluntary basis) should be any new parent carer's first stop for information and support. They will know what's available in your area and how to contact it. They will understand the service layouts, what questions to ask, what the short cuts are, which support group has the best coffee, everything. But, more importantly, they will understand exactly what you're going through at this very moment and be able to support you through your journey, empowering you along the way. Find your local forum here:


    2. Contact-a-Family
    Just the best organisation since sliced bread, lobbying on behalf of and supporting parent carers through legal disputes, education issues, childcare shortages and much more besides. Their website has an overwhelming amount of info, articles, youtube videos, contact info and legal advice - they also have a freephone helpline. Contact them for anything, including:

    - Social care and why it's useful (respite, direct payments, short breaks, sibling support, carers' assessments)
    - Benefits and your entitlements (Child DLA, Carers' Allowance, Child Tax Credits)
    - Finances, your employment rights as a carer, LEA childcare responsibilities
    - Support in your area (Whether there's a CaF worker locally to you, if there's a Carers' Support Centre, what a "Local Offer" is)
    - How to get networked with other parents in the same situation as you

    Their website is: https://www.cafamily.org.uk
    Their freephone helpline is: 0808 8083555

    3. Your local SENDIASS group
    Hilariously pronounced "Sandy-arse" (It stands for, and I'm only going to type this once, Special Educational Needs and Disabilities Information Advice and Support Service), your local SENDIASS will be the go-to people for all things education, including transitions, school choices, local authority obligations, after-school clubs, transport to school, the dreaded Education, Health and Care Plan (or just a Health Care Plan). It's important to note that you cannot be referred to your local service, only signposted to it. You must self-refer and contact them yourself.

    They're also often run by parent carers, they're also government funded and they're also a legal responsibility for local authorities to maintain and be mindful of. Contact your local SENDIASS for:

    - EHCP info (they may refer you forwards to another organisation called "KIDS")
    - Information and support about finding a school
    - Support at education meetings
    - If you are unhappy with a decision your local authority has reached
    - If you think your child is being unfairly treated or discriminated against (including school exclusions)
    - If you think your child needs more/better support in school
    -Anything else to do with education

    Unfortunately there's no single organisation that oversees education as each local authority is allowed some leeway in how they make their provision and decisions. However, to find your local SENDIASS, either google "SENDIASS <your LA name here>", search for "Local Offer" on your local council website or contact your local parent carer forum.

    3. Diabetes-specific support for parents.
    This is where I get a bit rocky as I have no hands-on experience of parenting a child with this condition. However, there seem to be two organisations in the UK that could offer advice and support:

    http://www.diabetes.co.uk/diabetes-and-parenting.html - the online resource for this very community!

    https://www.diabetes.org.uk/Guide-to-diabetes/Your-child-and-diabetes/ - with a helpline!
    0345 123 2399 or for those in Scotland: 0141 212 8710

    4. Carers Support Generally
    CarersUK is another truly fantastic resource and a really good place to go if you feel you're not being treated fairly either at work or in any other capacity. They have a broad knowledge base and both recognise and support parent carers as being part of the wider Care community.

    They've also achieved really incredible stuff by lobbying the government and have been instrumental in shaping recent pieces of legislation. To learn more, go here:

    Free helpline: 0808 808 7777

    5. Your Local Authority
    No matter where you live, your local authority has many legal duties to provide specific services and make information available to you:


    Particularly, your LA is required to maintain a disabled children's register (which sounds horrifying) and should - once you have registered your child - issue you with some kind of card to signify your child's name being entered. This card is like a magic trick and will grant you free entry as a carer to almost any attraction anywhere in the country - even London. Depending on your need (and, occasionally, persuasiveness) you should also be able to use the card to skip queues, access private, quiet spaces, disabled toilets and facilities, and access concessionary rates.

    6. Final Footnote: RADAR KEYS!


    There. I really hope this helps. You're not alone and you will get through this. What's written here is just the tip of the iceberg of what's available both locally and nationally.

    Luck and love,

    Sock x
    #1 SockFiddler, Jun 28, 2017 at 6:27 AM
    Last edited: Jun 28, 2017
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