Parental Support
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.
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Disability Living Allowance
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 click the relevant link below for more information and eligibility requirements.
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Education Health and Care Plan
An Education, Health and Care (EHC) plan is a legal document that describes a child or young person’s special educational, health and social care needs, explains the extra help that will be given to meet those needs and how that help will support them to achieve what they want to in their life. Please click the buttons below for more information on Education, Health and Care plans (EHC plans) and Special Education Needs and Disabilites (SEND).
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Respite Care, Direct Payments, Short Breaks
Different kinds of support and services 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.
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Support through Disabled Charities
There are plenty of charities that can help with completing forms, supporting you to access disabled services both locally and nationally.
Kids charity is run throughout Britain and can help with completing Disability Living Allowance forms, direct payments, home play therapy and sibling support.
Contact is a charity helping families with disabled children. They support families, bring families together and help families take action for others.
Other ways to seek assistance - there are many local and specific charities related to disabilities who support families who have worked in a particular industry. By clicking the Turn2us link below you will be able to search over 3000 UK charities for support.