Essential Info for Parents/Carers of Disabled Children & Adults – Part 1 Finance
When you first receive a diagnosis or begin to suspect that something is different about your child it can be a lonely, daunting, and overwhelming place. Whilst the overwhelm isn’t the same there are other points in your life when it can be hard to know where to turn for information. This is the first in a series of articles with information and links. I apologise for any mistakes and omissions. Please do point them out and I will try my best to correct them. As a resident of East Renfrewshire in Scotland some information may be most useful there. I will where possible make this clear and/or point to alternatives.
Being disabled can be an expensive business. There are more obvious costs like specialised equipment but also more hidden costs like the particular foods your child will eat, the endless toiletries that get poured into the bath, the excess trousers that need replacing. These costs may be different depending on the nature of the disabilities. Everyone is entitled to non-means tested government support to help negate these costs.
Non-means tested benefits
Children get either DLA https://www.gov.uk/disability-living-allowance-children in England and Wales or Child Disability Payment in Scotland https://www.mygov.scot/child-disability-payment
The forms are notoriously difficult to fill in as they focus on every negative aspect of your child’s life. It is highly recommended that you get help to fill out these forms. Here are some options for help:
The Citizens Advice Bureau (CAB) https://www.citizensadvice.org.uk/
Your local Carers Centre https://www.careinfoscotland.scot/topics/support-for-carers/carer-centres/
In Scotland your local delivery service team from Social Security Scotland can help you fill in forms https://www.mygov.scot/if-you-need-help-from-social-security-scotland/local-delivery
Help is available both online and in-person across most services now.
There are two elements for each of the benefits care and mobility. If you get awarded high rate for mobility you can get a Motability vehicle - find more information here https://www.motability.co.uk/ When you lease a car through the scheme your car lease insurance, vehicle services and MOTs, and breakdown cover are all provided in lieu of your cash payment. Many cars do require an advanced payment.You are also entitled to a blue badge, more info below.
Siblings aged 16,17 and 18 in Scotland can get access to young carers allowance https://www.mygov.scot/young-carer-grant Other benefits such as cheap cinema tickets are also available to young carers there is more information here https://young.scot/campaigns/young-carers/
Carers allowance https://www.gov.uk/carers-allowance is available to carers although there are strict criteria for both care commitment and work.
Housing benefit https://www.mygov.scot/claim-housing-benefit can help with costs of paying for a home although this is now usually paid with Universal Credit (UC)
UC is a payment to help with living costs see below for more information https://www.gov.uk/universal-credit
UC is available from 16 after full-time education. If appropriate, there are limited capacity to work and limited capacity to work and work-related activity. The latter gives you enhanced rate and limited interaction with Job Centre. Again, these can be complicated forms and a complicated process. You can get help from the agencies above as well as at your local job centre. https://www.gov.uk/contact-jobcentre-plus
Other considerations for adults are the amount of money an individual can hold in their name. Individuals with more than £6,000 will get less benefits and at over £16,000 many, including UC, will stop altogether. You should consider getting a trust fund as part of your will. There are also rumours that some services are only available if you get benefits. I cannot confirm these anywhere, but it is worth considering the finances carefully, especially if you would like your child be able to own their own home someday (more about housing in a future post).
Most councils have money advice teams. They all have different names, but your local council website should guide you to it. In East Renfrewshire they are the Money and Rights Advice Team https://www.eastrenfrewshire.gov.uk/article/1016/Money-advice-and-rights They can offer advice on all types of money related issues including filling in forms. In addition, they can offer advice on council specific benefits such as Council Tax reductions and financial assistance for housing adaptations for disabled people.
Disabled persons rail https://www.disabledpersons-railcard.co.uk/ and bus cards https://www.mygov.scot/disabled-bus-pass if required these cards will also allow a companion to travel for free or at a reduced price.
You can also apply for a Blue Badge which allows you to park in disabled bays and may entitle you to free parking. You can apply here https://www.gov.uk/apply-blue-badge but as they are issued by councils you should contact them with any queries. When travelling you should also check what the blue badge allows you to do in that area as each council area has their own rules, for example whether parking meters are free / parking on double yellow lines(where no obstruction is caused) is permitted / whether a time card needs to be displayed.
Many attractions offer free or discounted carers tickets. If you require 2:1 support, it may be harder to get two carers in and will almost certainly require a phone call or email rather than just booking online.
CEA cinema cards admit a carer into the cinema for free. They are available for people aged 5 and above https://www.ceacard.co.uk/
Many councils offer free or discounted gym/leisure passes for disabled people.
Whilst not a financial benefit, it seems logical to mention here that theme parks sometimes offer disabled people "fast pass" access meaning they don’t need to wait in queues. This is very variable, so check out the website before you go.
Grants can be found for many different things most commonly breaks or equipment. They usually don’t need paying back. There are a mix of means-tested e.g. - Family Fund https://www.familyfund.org.uk/scotland
and non means-tested e.g. - Take a Break https://takeabreakscotland.org.uk/
These search engines can help you find suitable grants:
Disability Grants – info on different types of grants available https://www.disability-grants.org/grants-uk-scotland.html
Turn2Us – financial support and advice and a grants finder Search for charitable and educational grants - Turn2us
Self-Directed Support (SDS) – Scotland only
SDS is the way that councils in Scotland deliver social care. It aims to offer a flexible and person-centred approach for people to have more choice and control over their lives. SDS pays for additional costs e.g. - a support worker to accompany your child to a club, but not the cost of the club (as that would be a cost otherwise incurred normally). The implementation of SDS throughout Scotland has not been the same with councils interpreting the guidelines differently. There are areas of good and poor practice in almost every local authority. However, the guidelines from 2014 have now been updated https://www.gov.scot/publications/statutory-guidance-accompany-social-care-self-directed-support-scotland-act-2013-2/ These should mean that SDS is more equitable, but it may yet take a while to filter down. Meanwhile you can use the guidelines to ensure you and the person you are supporting are getting the support they require
There are four choices for how to receive SDS:
The person receives a direct payment - they or an appointee e.g. a parent manage all aspects
The person directs the support - the person maintains control but choose someone else to be in charge of wages and other admin aspects
Local authority arranges support - minimal control for person
A mix of options 1-3
You can speak to the person who is helping you organise SDS about the options, commonly a Social Worker but sometimes other professionals e.g. - Health Visitors, for advice on options. Depending on the amount of budget and availability of services in your area it may be easier to start with option 3 until you are comfortable with how SDS works. Other places for support include:
Local independent SDS support organisations. You can find yours here https://www.sdsscotland.org.uk/find-local-information-and-support/
SDS Scotland is the national representative for local agencies working to provide information, advice and support for SDS implementation https://www.sdsscotland.org.uk/
In-Control Scotland are involved in the development of a sustainable system of self-directed support. They work with organisations, health and social care partnerships and people across Scotland. They run training and have lots of advice re SDS https://www.in-controlscotland.org/
ENABLE have a dedicated SDS specialists that are accessible for everyone in Scotland. Contact them here https://www.enable.org.uk/get-support-information/self-directed-support/ or phone 0300 303 0228 or email firstname.lastname@example.org
In East Renfrewshire SDS budgets for children are based on SHANARRI principles - Safe, Healthy, Achieving, Nurtured, Active, Respected, Responsible and Included. Adult budgets are outcome based. It is helpful to consider the outcomes and potentially do some planning before applying for SDS. Do remember that a bigger budget doesn’t necessarily mean a better life. Local and community supports may be more meaningful, safer, and free!
The Citizen’s Advice Bureau Money Map is a handy tool that contains information on many financial aspects and runs checks for eligibility for financial support Money map | Citizens Advice Scotland
Martin Lewis also has this article 31 Money Saving Tips & Discounts for Disabled People - MSE (moneysavingexpert.com) that has advice that is mainly relevant in England and Wales.
I do hope this has been helpful. Please feedback with any errors or omissions and I will update accordingly, as a live working document.