Finding support services before your child is diagnosed

Knowing how to find local support when you’re getting a diagnosis for your child can be difficult. Especially if you’re not sure when you’ll get a diagnosis or what sort of support you’ll need and what you can get.

Help from your local authority

If your child has additional needs, you can apply for support services from your local authority. They have to provide these services under the Children Act 1989 (GOV.UK).

The law defines ‘children in need’ as children under 18 years who either:

• will not meet or maintain a reasonable standard of health or development without local authority support
• are disabled

You can still get support without a diagnosis of a specific condition if your paediatrician or doctor has identified your child's additional needs.

Your child may have a mix of conditions, which can make diagnosis difficult. You’ll still need and be entitled to support and local services.

The Local Offer and finding support services

Local authorities must publish all services available to support disabled children and their families in the area. This is called a Local Offer. It covers education, health and social care services.

Contact your local authority to find your Local Offer (GOV.UK)

What services and support may be available

The services available vary between local authorities. They may include:

• daycare facilities for children under 5 and not yet at school
• holiday play schemes
• financial help
• care at home
• advice, guidance and counselling
• social, cultural or recreational activities
• sport and leisure support
• family centres
• some home aids and minor adaptations, such as hand rails
• transport help, such as a disabled parking spot or local transport services
• laundry facilities

Apply for short-term care for your child (GOV.UK)

In England, if a child is away from home for at least 3 months, such as in a hospital, care home or residential school, your local authority may provide extra services. These may include:

• advice, guidance, counselling
• family visits to the place of care
• visits home
• help to organise a holiday for family members to be together

How to get support for your child

Contact your local authority to ask for a needs assessment for your child. A member of the team will talk to you face to face or on the phone to assess your child’s and family’s needs.

The assessment should consider what’s needed to make daily life easier. You will then get recommendations for services and support. You can ask for a review if something’s missing, such as a bathing aid.

Support for parents

The local authority can also provide support services for parents, such as respite care.

Ask for a carer’s assessment as well as a needs assessment for your child.

Carer’s assessment (NHS)

Finding respite care

How to get local support as a parent carer

Some organisations and charities also have support services for parents of disabled children. These can include:

• sleep services
• support groups
• mental health and wellbeing support
• parent carer forums and online communities

Parent carer forums can be helpful for finding information about services or reading similar experiences or questions. Facebook support groups or pages can also be a good source of information from other parents.

Parent support groups

Contact your local authority to find your Local Offer (GOV.UK)

Visit our online community for support from advisers or other parents

Getting educational support in your area

If your child is not in school yet, speak to your local authority for guidance on Special Educational Needs (SEN) support services and special education schools.

Some areas provide home visits for preschool children with Special Educational Needs.

Check if your area has a portage service.

If your child is at school, ask the SEN co-ordinator (SENCO) about the school’s SEN policy and what support your child can get. Schools must make reasonable adjustments for your child.

If SEN support cannot meet your child’s needs, ask for an Education, Health and Care (EHC) assessment from your local authority. Doctors, health visitors and teachers can also ask for the assessment if they think it’s necessary. 

If your child is eligible, they will get an Education, Health and Care plan (EHCP) reflecting their current needs and future aspirations.

Education, Health and Care plans

Therapies and medical support

Talk to your paediatrician or doctor if your child needs therapies, such as speech therapy, occupational therapy or physiotherapy. They will be able to refer you for treatment.

Physiotherapy

Hydrotherapy