Parents praise interpersonal relations but lack of information limits their possibilities to make informed choices about services. In order to translate better into the daily life of the family the intervention should focus more on their activities, routines and participation within the communities they live in.

Tilgangur rannsóknarinnar var að kanna reynslu foreldra fatlaðra barna af þjónustunni sem þeir og börn þeirra njóta hjá Fjölskyldudeild Akureyrarbæjar, og að greina þætti sem tengjast ánægju foreldra með þjónustuna. Notað var blandað skýringarsnið. Í upphafi var gögnum safnað með matslistanum Mat foreldra á þjónustu sem sendur var til foreldra 115 fatlaðra barna, svarhlutfall var um 50%. Lýsandi tölfræði, marktektarprófum og fylgnistuðlum var beitt við gagnagreiningu. Því næst tóku 14 foreldrar fatlaðra barna þátt í umræðum rýnihópa til að dýpka og túlka megindlegu niðurstöðurnar frekar. Greining gagna leiddi í ljós að foreldrar, sér í lagi foreldrar yngri barna, telja að þjónusta Fjölskyldudeildarinnar samræmist hugmyndum um fjölskyldumiðaða þjónustu. Foreldrar upplifa jákvætt og styðjandi viðmót, gott aðgengi að starfsfólki og mikilvægan stuðning frá því. Einnig að þjónustan sé sveigjanleg og skjótt brugðist við úrlausnarefnum. Hins vegar skortir töluvert á upplýsingagjöf og skilgreina þarf betur hlutverk og verksvið deildarinnar. Foreldrar barna, sem þurfa töluverða eða alltaf fulla aðstoð við daglegar athafnir, voru ánægðari með þjónustuna en foreldrar barna sem eru alveg eða að mestu sjálfbjarga. Foreldrar barna með einhverfu voru óánægðari en foreldrar barna með skerðingu af öðrum toga. Þátttaka foreldra í ákvarðanatöku og jákvæð upplifun af framkomu fagfólks hafði forspárgildi um ánægju þeirra með þjónustuna. Leita þarf leiða til að stuðla að aukinni þátttöku foreldra í ákvarðanatöku og auka upplýsingagjöf enda getur skortur á upplýsingum valdið óöryggi og vakið þá tilfinningu að þjónustan sé tilviljanakennd. Sér í lagi þarf að huga að fjölskyldum barna á efri stigum grunnskóla.

The international literature continues to show that parents with intellectual disabilities (ID) do not receive proper support and face disproportionate rates of custody deprivation. Despite the efforts of activists, critical scholars and some progressive support workers, it seems that the situation of parents with ID have not improved much. Iceland ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2016. This contribution is one part of a larger project that aims to explore the impact of the ratification of the CRPD on service responses to parents with ascribed ID. Thirteen indepth interviews were conducted with staff supporting these parents. The findings indicated attitudinal and organizational barriers to realizing the goals of the CRPD in this area. However, the findings also indicated a number of pathways forward upon which to build and which may help to produce better outcomes for parents with ID.

Background: Many parents with learning disabilities find themselves locked in a struggle with child protection authorities to retain custody of their children.This struggle is one against deeply entrenched prejudices as well as social arrangements that often deprive parents of needed resources. This in-depth case study explores the contours of such a struggle, and the 'tools' deployed by one couple to keep child protection at bay. The goal is first to give the parents a platform to tell their stories. The second is to help inform the knowledge base of parents, advocates and allied professionals. The third is to consider the impacts the developing disability rights environment is having upon these ongoing struggles.Method: This is a qualitative case study based on interview and document analysis and long-term involvement with a couple with learning disabilities. The material was coded according to the principles of grounded theory.Findings: Three key categories were identified. The first is 'Lessons learned', referring to the knowledge and experience that the parents collected over a lifetime.The second is 'Allies: The family', highlighting the importance of a strong family network. The third is 'Secret weapons', a phrase used by the parents to denote a collection of advocates and professional supporters they strategically surrounded themselves with when needed. Conclusion:This story illustrates the parents' tactical skill and resourcefulness to retain custody of their children. We also document the addition of new tools the parents are able to make use of such as domestic disability and human rights protections that are in turn supported by international conventions such as the United Nations Convention on the Rights of Persons with Disabilities. However, we also contend that families like theirs live in a state of fragility, and disruptions to their support can result in further child protection interventions. K E Y W O R D S parents with learning (intellectual) disabilities, family integrity, support, child protection, United Nations Convention on the Rights of Persons with Disabilities (CRPD)