Changes that Little Miracles Charity would like to see include –

• The role of Minister for Disabled People to be reinstated as a senior role in Government - people with disabilities deserve a strong advocate

• Small charities like Little Miracles to be resourced and financially supported - we are providing many essential services that the government is not and receive almost no support or funding

• An end to the proposed changes to Personal Independent Payments (PIP) – it can be incredibly expensive to ‘be disabled’, on average it costs an extra £975 a month (Disability Price Tag 2023: the extra cost of disability | Disability charity Scope UK). Costs associated with day-to-day living like paying your electricity bill to charge an electric wheelchair or run life-support, travelling to hospital appointments and hospital parking would not be covered by the proposed ‘Access to Treatments’

• A social tariff to cap the cost of energy for people running medical equipment at home - 40% of families with a child on life-saving medical equipment have had to cut back on usage or been forced to charge it elsewhere (Out of Energy (contact.org.uk)). This is something that we have seen first-hand at our Little Miracles centres

• A rise in the income threshold for claiming Carer’s Allowance - currently Carer’s Allowance is £81.90 a week. This equates to just £2.34 an hour over 35 hours. A working parent who is claiming Carer’s Allowance can only earn an additional £151 a week and as soon as they earn more their Carer’s Allowance is cut completly. Many parent carers want to work longer hours but the reality of losing £81.90 a week means they cannot. We want to see an increase in the amount of Carer's Allowance to a liveable wage and the income threshold rise to remove this cliff-edge situation

• A change to cutting benefits for families with a child who has a complex health condition and may need spend lengthy time in hospital - currently cuts are made after 12 weeks to Universal Credit, Child Tax Credit and Child Benefit leaving parents suddenly much worse-off if a child develops, for example, cancer. For many of the families that Little Miracles support who are already struggling emotionally and financially, this can push them to breaking-point

• To allow disabled children to access their savings - the government introduced Child Trust Funds in 2005 when all children in the UK born between September 2002 and January 2011 received £500 in government vouchers as an incentive to join the scheme. Disabled children and those from low income families received larger amounts to provide additional benefits in later life. This money was then locked away with parents able to add more to the account each year until the child turned 18. But no consideration was given to what would happen if any of the children lacked the mental capacity to manage their finances once they turned 18. There are £210 million of savings owed to disabled young people (Child Trust Fund campaign (contact.org.uk)). To access it, parents need to apply to Public Guardian Authorities with lengthy, costly application processes involving GP or social worker referrals and long delays

• More places for children with disabilities in ‘special schools’ - the education system is failing young people. Applications for specialist placements often take years, many councils admit they cannot even meet the target of 26 weeks just for the initial EHCP, and in the meantime school placements break-down. Young people are being excluded from education because schools cannot meet their needs, often due to resourcing issues, and ultimately the child will leave education without the skills they need to work. There is a recruitment crisis in schools which could be helped if more specialist teachers were recruited to look after those with needs. If schools were properly resourced there would be fewer teachers leaving the profession

• Investment to reduce the waiting time for Autism assessments on the NHS (which are currently frequently exceeding 4 years) – we also need proper, planned provision of specialist support post-diagnosis

We have invited local election candidates to read our concerns and respond accordingly. We look forward to publishing any responses we receive.