The study found an increasing number of ventilator dependent children and young people living at home. Almost three quarters of the sample had a physical disability as a result of or in addition to their primary diagnosis. There was wide variation in the amount of paid care supporting these families which appeared unrelated to the level of ventilatory dependence. Nurses working in community children's teams or hospital outreach teams were the most frequent care organisers and care managers. The majority of the care packages were funded by Health Authorities.