Help for families · Support
Help in the home
Living with a CASK gene mutation is challenging and most families will require additional support.
Portage — additional support through play
Certain counties have a Portage service offering additional support. Portage is a home-visiting service for pre-school children with SEND and their families. It works with families to help improve quality of life for the whole family and aims to minimise the barriers that confront such families. The Portage service varies from place to place, but often manifests as play therapy for the child and helpful advice. Ask your health visitor or GP if Portage is available for your child.
"We looked forward to the fortnightly, hourly visits where our daughter would be entertained and stretched, and we would be inspired and reinvigorated."
Home-Start — support for caregivers
A charity that helps local families who are going through difficult times. Families are assigned a volunteer who visits weekly to help out.
"Our Home-Start lady provided emotional support and a helping hand when life was overwhelming."
Hospices — offering respite
Some hospices offer "at home respite" — a member of staff comes to your home and occupies and entertains your child, giving you that much-needed break. If you are eligible for hospice help then investigate whether at-home help is available.
Direct payments from the council
As a carer you may be entitled to receive a personal budget after having a carer's assessment to see what might help make your life easier. The money can be used to pay for carers to come into the home to help care for your child.
For additional support from charities, visit our Charities page.