In a major piece of research with families we discovered that many are desperate and terrified of an uncertain future:
1. “Who will care after I’m gone?” â The biggest concern facing parents is the question of what happens to their son or daughter after they die. They need reassurance that practical and emotional support will be available to their children when they are not around.
2. A constant fight to be heard â They are exhausted by the amount of energy, patience, and commitment they need to secure decent care and support for their sons or daughters. They told us they have to be in crisis to be heard.
3. Cuts in funding â Many parents we spoke to told us they are fearful of shrinking budgets and are already feeling the impact of cuts on the provision of care available.