Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?

The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present specific needs. The lack of understanding of these needs makes it difficult to introduce solutions tailored to their reality. The results of this current study suggest that many needs of young adults with profound ID and their parents are not met despite existent transition planning services. Transition to adulthood seems particularly difficult for these families who face many challenges. Parents in this study proposed different obstacles during transition to adulthood that could be improved for creation of future solutions adapted to their reality.