Sonja Mensch

138 Chapter 7 Policymakers too increasingly require objective information. Again, as described in this thesis, I want to emphasize the complexity and importance of objective evaluation of interventions and how it affects the wellbeing of this group. However this group is relative small, often unknown and heterogeneous (Health Care Inspectorate [Inspectie voor de gezondheidszorg (IGZ)]., 2000) and therefore the acquisition of grants and funds required for research is very difficult. I would advocate relying more on practice based evidence than on evidence based practice in this group of children. My second concern is that since January 2015 the municipalities are responsible for all youth welfare and youth care services, ranging from preventive services to child protection services. The new youth care system should be more efficient, coherent and cost-effective. A focus on prevention, the capacities of youth and parents, support at an earlier stage, care made to measure and a better cooperation between professionals was thought to decrease the use of specialised services (Bosscher., 2014). Unfortunately, children with SMD and their parents need to be helped by specialists and need specialised, often costly services. Due to the lack of objective information, the inefficiency of the new care system and the lack of specialists who know the needs of this group, these children and their parents are the victims of this transition. Paradoxically, as a group, the health of children with SMD has improved over time causing some children to survive into adulthood. From the age of 18 these children are considered adults by law, which means smaller budgets while their need for specialised and often expensive care has not changed. I will give one very distressing example. In the case of a child with SMD who doesn’t have a feeding tube, and needs to be fed by a care-giver specialized in preventing aspiration causing the child to complete his meal half an hour later than a child without SMD. When this child reaches the age of 18 by law this child is formally an adult and so it will be placed in a day-care centre for adults. Although this client has the same special needs, care-givers in day-care centres for adults do not have the time needed for example to feed clients in this manner. Parents depend on the care of a specialized day-care centre so they can continue caring for their child in their own home during the evenings and weekends. It also enables them to participate in society as a whole by being able to work during the day or care for other family members that might need help. They cannot be expected to provide 24-hours care because of the child’s serious health problems and the intensive care it needs. If day-care is not available because of a reduced budget, parents will be forced to place their child out-of-home or accept that in order to remain at home their child needs to be fed through a gastro-intestinal feeding tube. Parents of children with SMD are obviously aware that the life expectancy of their child is limited, but like every other parent they