Working with your local services

Once your child has been diagnosed with a primary immunodeficiency (PID) your local authority services should kick in to help with your child’s needs.

This is a difficult time for local services. Local authorities have had their budgets slashed. Their spending is under scrutiny.

However, the care of a child with special needs is considered a front line service.

You are legally entitled to services such as education for your child, possibly transport to and from school and assistance with adapting your home.

It is quite possible you will have a love/hate relationship with your local council.

You will spend a lot of time on the phone to them, they won’t return your calls, they will let you down over and over again. But when they get it right you will be phenomenally grateful.

In this section, we’ll steer you through the legal obligations of your local authority.

What legal obligations does the local authority have?

In association with legal firm Irwin Mitchell, the Every Disabled Child Matters campaign has produced a leaflet in order to help families with disabled children understand their rights and get the support they need.

In essence, under the Children Act 1989, a local authority is obliged to assess the needs of a ‘child in need’ and to then provide services that meet those needs.

A ‘child in need’ includes children with disabilities, but also includes children who will need services to maintain their health and development, as needed by a child with a PID.

Specific guidance sets out details of the contents and the timescales for such assessments (although it should be noted that it is currently subject to consultation and review).

At present, a local authority needs to decide within one working day of a referral whether a child should have an assessment. An initial assessment must be completed within seven working days and a core assessment should be carried out within a maximum of 35 working days from the end of the initial assessment. This should be a detailed document setting out the complexities of a child’s needs, including (where necessary) discussions with other bodies (such as the local NHS trust) to accurately assess a child’s needs.

The assessment should conclude with a ‘realistic plan of action’, including details of services to be provided, to ensure that the child’s well-being is secured so far as possible. This is often not achieved, despite the courts having repeatedly held that assessments are unlawful without such a plan.

If a council has given my child an initial assessment, can I insist on another one if her needs change?

In a word, yes. A local authority is subject to an ongoing duty to assess and meet the needs of any disabled child in its area under the Children Act 1989 and so if your child’s needs change the local authority will need to reconsider your child’s needs.

I have been fighting for respite care for 11 months. Should I employ a lawyer?

The provision of respite care should be considered within a disabled child’s care assessment. If there has been no decision for 11 months, that would be a serious cause for concern and you may wish to seek legal advice. Legal aid may also be available to you to investigate this, and certainly we would not expect any law firm to charge for an initial call or enquiry.

In some cases, it may be more appropriate to make a complaint than to engage a solicitor. It is difficult to be precise as to which route is appropriate as the decision is fact specific, but generally speaking the magnitude and urgency of the issue may make the complaints process an inappropriate remedy.