All participants had heard the term ‘family-centered care’ (FCC), and most parents reported positive experiences with FCC related to professionals who were directly working with their child, especially related to targeting goals that were meaningful to the family and being treated as a valued team member. However, participants talked extensively about disconnects between family-centered “carers” (i.e., professionals “on the ground” with whom they had direct interaction) and the family-centered policies and practices perpetuated through administrators and funders, with whom the family may or may not directly interact (“care system”). These broad experiences emerged as a core theme “System of Exclusion”, which integrated two key themes reflecting experiences with the “care system”:
Parents strongly perceived lack of transparency about the options available to families, which they felt was deliberate and that funders were “looking for a way out of providing” services. Parent’s felt that “it’s not that the service providers have been horrible, but to actually get the services has been horrible.” Paula articulated her struggles with the education system, highlighting potential difficulties for family-centered service providers