This issue of Frontline looks at some of the issues that families live with in providing for their disabled son or daughter over the life span. Parents very often talk about hearing the news of their child’s disability and they describe it in many different ways. Others identify how disability has changed their lives and permeates their day-to-day living; they talk about the ongoing struggles for services, and even the right to be heard. For many parents, this is a journey into a labyrinth—with many false starts and cul de sacs. The journey to the centre of the labyrinth can be lonely and anxiety provoking. When that centre is reached, many parents hope their son or daughter will have honed their hard won skills to be able to live ‘independent lives’, but they are often frustrated by the unreliability of state and community supports to facilitate that continuing journey for their family member.
Parents often cite how family relationships have strengthened and changed because of their evolving understanding of disability and, in particular, the contribution their disabled son or daughter makes to the life of the family.
Relationship is at the core of that contribution, and very often it is built around small but important, normal daily steps. And if a person with a disability has no opportunity for relationships outside of their family, they can lead a very restricted life. The expression of emotion can still be seen by society—and within service settings—as the preserve only of the ‘able-bodied’. Living a lonely life is often the lot of people with intellectual disabilities. But a continuing theme in the contributions to this issue is how people with an intellectual disability can and do make many positive contributions to the lives of their family and community.
The roll-out of intervention teams throughout the country has been positive for families. Is there a need, however, to have less of a focus on assessment and more of a focus of working with parents to understand the lifelong journey ahead—and to understand the person in the context of relationship? In the current medical card reviews, some parents are again being asked to ‘prove’ that their son or daughter has a disability, despite the files of their many assessments which attest to that fact.
The struggle continues. It is reminiscent of similar issues in the late 1970s. It can be an inescapable labyrinth—one step forward, two steps back. But it is a remarkable testament to the resilience of parents, brothers, sisters and extended family members, that they continue to take those steps forward because of the importance of the close enduring family relationships established with the person with the intellectual disability—where would we be without strong mothers and fathers?