Parental support
Caring for someone with PMS is a lot. These are the main kinds of support you can ask for, and the organisations that can help you get them.
It takes time to understand a Phelan-McDermid Syndrome diagnosis and what it means for your family. Coming to terms with a child's disability can be very emotional, and forms for Disability Living Allowance and Education, Health and Care plans, on top of medical appointments, can feel overwhelming.
Most areas of the UK have support in place for parents of disabled children and children with special needs. All parents of disabled children have the right to ask social services for an assessment (in Scotland this is the Social Work Department, and in Northern Ireland the Health and Social Care Trust). Your local council has a duty to provide these services under the Children Act 1989. Your paediatrician, your child's school or your GP can refer you, or you can refer yourself.
Just had a diagnosis? Start with our first steps page.
Disability Living Allowance
Disability Living Allowance (DLA) is a tax-free benefit for disabled children and adults to help with the extra costs of being disabled. It is based on the needs that come from a disability, not on the disability itself: for example, if someone needs help to be looked after. DLA has two parts: the care part and the mobility part.
For eligibility and how to apply, choose where you live:
- England: DLA for children on GOV.UK (external website)
- Wales: DLA for children on GOV.UK (external website)
- Scotland: Child Disability Payment on mygov.scot (external website)
- Northern Ireland: DLA for children on nidirect (external website)
- Republic of Ireland: Disability Allowance on Citizens Information (external website)
Education, Health and Care plans
An Education, Health and Care (EHC) plan is a legal document. It describes a child or young person's special educational, health and social care needs, explains the extra help they will get, and how that help will support them to achieve what they want to in life.
Respite care, direct payments and short breaks
Different kinds of support can be arranged locally for your family, such as parent-led groups, overnight respite, holiday play schemes, after-school clubs and one-to-one support. Every council has a "Local Offer" setting out the services it provides for disabled children and children with special needs.
- England and Wales: Contact (external website)
- Scotland: Enquire (external website)
Support from disability charities
Plenty of charities can help you fill in forms and get disability services, locally and nationally.
- Contact (external website) helps families with disabled children. It supports families, brings them together and helps them take action for others.
- KIDS (external website) works across Britain and can help with DLA forms, direct payments, home play therapy and support for brothers and sisters.
- Turn2us (external website) lets you search over 3,000 UK charities, including local ones and those that support people who have worked in a particular industry.
