Much less attention has been paid to the positive impact of the child with intellectual and developmental disabilities on the family (Blacher & Baker, 2007). The Similarly, parents needed support to deal with services. Journal of Applied Research in Intellectual Disabilities, 27, 174-186. According to the Scottish Government (2008), being a ‘good enough’ parent requires parents to be able to provide basic physical care, love and affection, security, guidance, boundaries, and age-appropriate responsibility and independence. Besides advocates, professionals identified grandparents as being a crucial safety net (McGhee and Hunter, 2011). Guest posts will be published on the Healthy Debate website and shared through our Twitter, Facebook, LinkedIn networks, as well as on our weekly newsletter. How will he adapt to that major change? My stunned response was less than articulate, but here’s what I came up with in my head as I made my way home: “Is your greatest dream for your daughter to live with you in complete dependence until you can no longer care for her or until you die trying and then to be cast into the next available “bed” no matter how inappropriate the setting is to her needs, interests and abilities? Contact us if you experience any difficulty logging in. This is particularly important during child protection proceedings (MacIntyre and Stewart, 2016; Cox and colleagues, 2015; Bauer and colleagues, 2014; McConnell and Bjorg Sigurjonsdotttir, 2010). Importantly, Hastings et al. U.S. Centers for Disease Control and Prevention provides example visua​​l schedules with drawings families may find helpful. Inconsistency in terminology used (learning disability, learning difficulty, learning need, global developmental delay) and the use of different diagnostic criteria means that data that is collected by individual organisations cannot be compared or collated accurately (MacIntyre and Stewart, 2016; Cooper and colleagues, 2016). This product could help you, Accessing resources off campus can be a challenge. It's also important to stay in touch with teachers and therapists so you can ask questions or seek advice. COVID-19 resources for psychologists, health-care workers and the public. Parents may feel overwhelmed by the needs of their child and feel helpless with meeting these needs. Some research has even shown that parents themselves can be trained to be mediators or facilitators to support other families. partners, siblings, parents) and acquaintances (i.e. Tarleton B and Porter S (2012) Crossing no man’s land: a specialist support service for parents with learning disabilities. For example, one professional stated: ‘You’ve got to be careful to do the things that they [parents] see they need and not the things that you [supporter] see they need…you’ve got to work with them where they are at and not want to change everything’. Well, even if that were true, which I don’t believe it is, it would only be because the alternatives often involve “placing” young adults in nursing homes and institutions, rather than in safe, appropriate and supported homes in their communities. You may be trying to access this site from a secured browser on the server. Tarleton EJ and Ward LM (2007) ‘Parenting with support’: the views and experiences of parents with intellectual disabilities. The second phase of screening involved title and abstract selection by two independent reviewers (JK [PhD student] and WvO [PhD, experienced in conducting systematic reviews]) based on three inclusion criteria: (1) participants were parents with ID, their professionals or informal network members (note: professionals and informal network members had direct interactions with parents with ID, see search strategy); (2) outcomes included perceptions on the support needs of parents with ID; and (3) studies were qualitative or used a mixed-method format (Table 1). If anyone else were to make a call, including someone who merely didn’t like us and knew of this experience, the outcome would likely be a lot worse for us and our son. Stay connected virtually. It’s great to read this perspective!! type of support, value of different support members, service conditions and characteristics of support members) emerged from the analyses and were used to structure the ‘Results’ section. Six studies included the perceptions of professionals; a total of 81 professionals participated in the selected studies. the wide differentiation in descriptions about how to listen) at least underline the importance of particular support needs according to parents (e.g. This safeguarding/support conflict experienced by professionals is also reported by Tarleton and Porter (2012), who refer to the distance between adult and children services as ‘no-man’s land’.