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Parent Advice for Therapists and Case Managers

In preparing a training module for BC social workers, we sent e-mail notices to three Internet mailing lists which focus on issues related to disability and community: Our-Kids (a list of over 900 families with children who have disabilities) C-Palsy (a list of men and women who have cerebral palsy) and a list of professionals and advocates in the field of community inclusion.

The three lists generated a number of common 'messages' to social workers who will be working with children and adults with disabilities and their families:
bulletFirst, last and always, operate with empathy (this was mentioned by dozens of respondents); practice 'walking in the shoes' of the family or the individual; get to know what their day-to-day reality is like.
bulletPlease do not assume that difficult behaviours - especially in children - are a result of emotional disturbance, abuse, or neglect without helping the family rule out any medical, neurological, or biochemical causes.
bulletSmash the belief that the presence of a child with a disability wreaks havoc in a family, leading to depression, marital breakup, etc. More than anything I would want you to understand that it is not the child but the society that causes families to break apart. Please take the blame away from the kids.
bulletRecognize that having disabilities in one's family does not mean that there is something wrong with the family or that it is broken and needs 'fixed'.
bulletBe prepared to address the express interests of the family, and at the same time be very clear about what you can and cannot do - about your role and the limits of your craft.
bulletAlthough families might know a great deal about their own children, don't assume that they know a great deal about the 'ins and outs' of the social service system. Don't wait for them to ask 'the right question' about what's available - tell them.
bulletOne of the most important things that social workers can do is to be absolutely on top of support services, programs, advocacy groups, etc., and share this knowledge very freely.
bulletAsk parents what they have been told and understand about their child's condition - an inaccurate prognosis can have a devastating effect on a parent-child relationship, and can be emotionally overwhelming.
bulletTake parent concerns seriously, and don't rush to judgment in assuming that the parent is 'hyper-vigilant' or over-concerned.
bulletSpeak to the gifts.
bulletGive the families hope.
bulletRecognize the 'strains' that might be present between 1) why you came into the field of social work in the first place, 2) how social work training defines and shapes our practice, 3) how the organizations we work for define and shape our practice, and 4) what parents and consumers expect in the social work role.
bulletStay actively involved with consumers and families; take the time to understand the family's needs; make yourself available in 'off' hours (most family crises don't happen between 9 and 5 on weekdays).
bulletBe willing to listen to alternatives, brainstorm to find solutions, know the difference between policy and law and how to be flexible with policy. Don't be too apprehensive about applying for waivers or exceptions.
bulletUnderstand that families have developed a great deal of expertise about the medical issues facing their children - treat the families like the skilled allies they have learned to be. Let them be your partner.
bulletTake the time to learn something about the specific disabilities of the individuals and families you're serving. Do some outside reading. Use the Internet.
bulletPlease don't judge the family you're working with, especially if the family includes a child with a disability. Realize how biased judgment can be. Judgment is the toughest thing a social worker can do to a family. Judgment is very intrusive and can be unfair.
bulletLook at all children and adults with disabilities and their families as individuals. It is very easy to talk about kids or families 'like these', but most of us don't fit into any mold. We all have different strengths and needs, even if we look alike 'on paper'.
bulletBe compassionate, but don't pity us. We need support, encouragement and understanding. We do not need sympathy, condescension, or superiority.
bulletGet to really know some families and individuals with disabilities.
bulletSee the family as a whole more often.
bulletRecognize what a huge responsibility you have.

2003 David and Faye Wetherow ! CommunityWorks

 
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