Magazine article The Exceptional Parent

Parents as "Health" Educators

Magazine article The Exceptional Parent

Parents as "Health" Educators

Article excerpt

Parents As "Health" Educators

Parents have been and continue to be the major educators about children with disabilities and their families -- their "students" have been education and health care professionals, the media, the clergy, political leaders, planners, and their friends and neighbors. Now, as health care is being debated in many arenas, parents have a major educational job to do.

Parents are major on-going, active participants in providing adequate day-to-day health care for their children. Active parents and parent-run organizations have brough about changes in parent/school collaboration. They can now bring about similar changes in the ways parents and health care professionals work together.

When parents meet with professionals about the health care needs of their child, they need to make clear their expectations. Conferences with health care experts must go beyond information about their child's diagnosis and treatment. Parents must describe their everyday lives with their children and insist that health care professionals translate their technical understanding of the child into plans that fit with the everyday life style of the family. Parents will need to be assertive in insisting that their views be respected and that their abilities to help their child become part of any health care plan.

Time is precious for everyone -- parents as well as professionals. Parents will need to educate health care professionals about finding meeting times that are convenient for both parents, rather than the traditional expectation that one parent (usually a mother) will meet at the convenience of the health care professional. Furthermore, parents must insist that any meeting needs to provide ample opportunities for give and take, respectful discussion including disagreements, and enough time to plan the next steps together. For many health care professionals, making such practical translations will be a new experience -- an experience for which they have often not been trained.

For parents, entering into any collaborative efforts with health care professionals is likely to be like a trip to a new culture, with another language and different customs. When we visit a new culture, we prepare by trying to understand the ways that culture is different from as well as similar to our own. We must identify those factors that are critical to the success of the journey and ask questions to learn. At the same time, people in the new culture must develop some understanding of the challenges faced by the unfamiliar visitor. …

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