PMSFUK - Phelan McDermid Syndrome Foundation UK
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Parental Support

Parental Support, Social Services and Respite Care

It takes time to understand the Phelan-McDermid Syndrome diagnosis and what that means for the family. Coming to terms with a child’s disability can be very emotional. The process of completing forms for, Disability Living Allowance, Education Health and Care plans on top of medical appointments can be overwhelming. Most boroughs in the UK should have support in place for parents with special needs and disabled children. All parents of disabled children have the right to ask for an assessment by Social Services. (in Scotland this is known as the Social Work Department, and in Northern Ireland it is the Health and Social Services Trust). Your local council has a duty to provide these services under the Children Act 1989. You can ask to be referred by your Paediatrician or the school or self referral through a GP.


A specialist social worker from the disabilities team should visit your home to carry out an assessment into your child’s needs and support needed by the child and family. The social worker also collates information from other settings where your child is cared for, to get a holistic view of the child’s disabilities, needs and medical history. You can discuss the different kinds of support and services that can be accessed locally to support your family. Some examples are; Parent led groups, overnight respite, holiday play schemes, after school clubs and one to one support. All councils will have a ‘Local offer’ of services that they provide for disabled and special needs children in their borough.

Guide to Direct Payments

A direct payment is a payment from your local council; this is provided to support the additional needs of the person with a disability. These can also be provided alongside other agreements with social services.


After the assessment from a social worker a plan is agreed at a panel meeting and a budget will be allocated, this is usually an agreed amount of hours over a fixed period. The money can then be used to employ a carer (personal assistant) for your child to help the family. Social workers will be able to guide you how to employ a carer and support you in the process of recruitment, CRB checks, insurance and payments.


Direct payments can also be used to pay for other services and assistance such as after school clubs and holiday’s clubs.


Disability Living Allowance (DLA) is a tax-free benefit for disabled children and adults to help with extra costs you may have because you are disabled. It is not based on your disability but the needs arising from it. For example, if you need someone to help look after you. Disability Living Allowance is in two parts – the care component and the mobility component. Please go to the DLA web site (listed below) for more information and eligibility requirements.


The DLA forms can be overwhelming to complete but there is plenty of help out there to complete them. Kids charity is run throughout Britain and can help with completing DLA forms, home play therapy and sibling support.

Other ways to seek assistance

There are many local and specific charities related to disabilities and who support families who have worked in a particular industry, the below search engine enables you to search from 3000 UK charities.