Having a child with a disability can feel like a challenge, but you are not alone. Many families are having to navigate through what seems like an ever-changing world due to changes in legislation and the way in which services are provided across the country.
Parenting a child with CDKL5 is not something you can change, but the experience that you, your family and your child has can be enhanced by ensuring that you have the best support that is available. Every local authority operates to their own policies, and generally a local authority should make sure that children with disabilities are identified early and that effective support is in place for them to ensure that the families are kept at the centre of discussions and decision making for their children.
Under Section 17 of the Children Act 1989 it states that:
(1) It shall be the general duty of every local authority (in addition to the other duties imposed on them by this Part)—
(a) to safeguard and promote the welfare of children within their area who are in need; and
(b) so far as is consistent with that duty, to promote the upbringing of such children by their families,
by providing a range and level of services appropriate to those children’s needs.
Section 10 goes further to explain that:
For the purposes of this Part a child shall be taken to be in need if—
(a) he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part;
(b) his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services; or
(c) he is disabled,
and “family”, in relation to such a child, includes any person who has parental responsibility for the child and any other person with whom he has been living.
It is probably useful to stress at this point that as local authorities operate to their own thresholds and regulations, that they also provide services in different ways. However, it is likely that your child will meet thresholds and you and your family will be supported by the local authority's Children with Disabilities Team. It is important to note however that what one family say in Cheshire is getting in terms of a care package might be totally different to what someone in Essex might be getting for example.
Normally unless a child meets the criteria for NHS Continuing Healthcare (see section on this) the local authority will not normally provide a statutory service until your child is 3-5 years old. However, this does differ across the country. For some children and their families they maybe supported under the Early Years services or Common Assessment Framework, which is the level that sits below social care and the support is normally provide by a chlidren's centre, a child developmental centre or opportunity group.
Changes to the education system and, in a bid to provide coordinated services, the rules changed with the introduction of the Children and Families Act 2014 in September 2014. This new Act ensures that support is coordinated and this is done with the introduction of Education, Health and Care Plans (EHCP) and replaces the former statement of educational needs. Local authorities have 3 years in which to switch children and young people currently accessing a statement of education needs to EHC Plans. We will not go into detail here, as there are a number of great resources which have been created in order for you to understand this process. Mencap’s Young Ambassadors have been working with the Department of Education to make easy read guides about special educational needs and disabilities (SEND) for parents and children and young people.
This easy read guide has been written for parent carers to help them understand the recent changes to special educational needs and disability support can be accessed here