As a parent carer you of a disabled child or a child with complex health conditions, you might be entitled to certain benefits and services that can help you, your child and your family.
Children and young people are eligible for support and services if they have a physical or mental impairment, which has a substantial and long-term effect on their ability to carry out day-to-day activities.
This may include children with
• a physical or learning disability
• a hearing or visual impairment
• Autism and Asperger's Syndrome
• challenging behaviour as a result of their learning disability
• complex health needs
• palliative care needs, a life limiting or a life-threatening condition.
The type of support available may include
• Benefits and tax credits
There are a number of benefits and tax credits that you may be entitled to. Some benefits can be paid because your child is disabled while others may be paid to you for other reasons. For example, you may be getting disability living allowance (DLA) for your child and Carer's Allowance as their carer. Depending on your income and certain other factors, you may also be able to claim benefits such as income support, child tax credit and housing benefit. Link here
• Support from Children’s Services
Every local authority has a duty to protect and promote the welfare of children in need in its area. As a parent carer of a disabled child you have the right to ask for support and have your child's and family's needs, as well as your own needs assessed by social services.
Areas of support include
• Getting practical help from social services.
• Needs assessments - finding out what support your child needs.
• Personal budgets and direct payments - options for paying for social care services.
• Short breaks - your right to having a break from your caring commitments.
• Help with parking - Blue Badge.
• Play, leisure and recreation.
• Aids and equipment.
• Moving into adult services.
A ‘needs assessment’ of your child is a process the local authority use to decide if extra support to meet the needs of your child and your family. Local authority Children’s Services will have a ‘Children’s Disabilities |Team’ who will normally carry out this assessment.
During the assessment you will be asked you for information about your child, for example details about their sleeping patterns, eating habits and how they communicates. You will also be asked about other children you look after. The assessment will always be based on your needs and those of your child, rather than what services are already available.
If eligible needs are agreed a care plan will then be created and implemented, and a care team formulated to coordinate the plan and review the outcomes
In England, if a child has an Education, Health and Care plan then the type of support, who will provide it, including use of direct payments, should be included on this plan.
Following an assessment services available may include:
• short breaks both in and away from home; these could be in the form of a few hours; all day or in some cases overnight.
• direct payments which are payments to purchase short breaks and sometimes other services to enable choice and flexibility.
• physical and practical support within the home
• direct work children who have been assessed as having complex significant needs.
• specialist support services via the Children's Disability Team
• advice, assessments and support.
• special assessments on behavioural interventions and sleep management
• advice and support in relation to learning disabilities and health need
Referrals for services should be made via the council’s team will carry out a needs assessment of the child and of the parent carer.
Other services may be provided by the local authority, such as information, advice and guidance, and financial help in exceptional circumstances.
Under the Children and Families Act 2014, local authorities must have a ‘Local offer’ for parent carers which sets our what support is available to you and your child. For more information click here
The local authority may decide there is no need for services, which could result in your case being closed with no further action taken. If you disagree with this decision, you can challenge it using the local authority's complaints procedure.
The main route involves undergoing an assessment of your child and family's needs by children's services.
Parent carer assessment
All parents under the Children and Families Act 2014 have a right to request an assessment of their own needs. A local authority must assess parent carers if
• it appears to the authority that the parent carer may have needs for support’ OR they
• receive a request from a parent carer to assess the parent carer’s needs for support’
The Act also states that
‘a parent carer’s needs assessment must include an assessment of whether it is appropriate for the parent carer to provide, or continue to provide care for the disabled child, in light of the parent carer’s needs for support, other needs and wishes’ (Children and Families Act 2014 Section 17ZD (9))
The assessment must also take into account
• The wellbeing of the parent carer
• The need to safeguard and promote the welfare of the disabled child cared for and any other child whom the parent carer has parental responsibility for (Children and Families Act 2014 Section 17ZD (10))
It is important to note that any assessment of your disabled child should take into account the needs of the rest of the family, including parents and siblings and consider their needs as a carer and their capacity to continue with caring. You may not require a separate assessment if your needs have been consider in your child assessment.
However, if you feel your needs have not been considered or your circumstances have changed for example you wish to return to work you can request a individual assessment.
Other family members may also be entitled to an assessment of their needs under the Carers (Recognition and Services) Act 1995, which remains enforce for them. These family members such as grandparents may be able to access an assessment if they are providing ‘substantial and regular’ care (this is usually defined as 35 hours or more per week)
Transition from children services to adult services
Parents who care for a disabled child or young person may require support to prepare for transition to adult services. Under the Care Act 2014 they have a right to have their needs assessed to identify any support which may be need once the young person turns 18. The Act does not specify when this assessment should take place, but states that it should take place when it is of ‘significant benefit’ to the young person or carer.
Working and child care
For many parents of disabled children it's very difficult to think about paid employment, particularly if your child needs a lot of care.
For information on your employments rights
Contact A family offer a free parent guide you can download ‘Moving into work [PDF] or you can request a free print copy from their helpline.