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Building Self-Advocacy through a Community-Based Movement

Categories: Activities, Learning Disabilities, Parenting

In this last installment of a three-part series, Stewart J. Hudson, president of the Emily Hall Tremaine Foundation, elaborates on the dynamics of engaging parents and building a movement to help children with learning differences. “We began by supporting the Frank Porter Graham Child Development Institute, an early childhood organization which is very well known in America for innovation, and they’ve been working at this for five or six years. This ultimately led the Federal government, in part, to sponsor a national center on response intervention and early childhood, the Center for Response to Intervention in Early Childhood (CRTIEC), now located in Kansas City, Kansas.
  Parents tend to be more receptive when someone is not telling them, with some sort of medical certainty, that their kid has a deficiency or disability.
“This also created some benefits that we didn’t even imagine in the beginning. For example, it’s now possible to reach parents at an earlier age, when they are more interested in their children’s education, and more open to being educated about learning disability issues. “When you’re attempting to build a movement of those who care about kids who learn differently, they tend to be more receptive and less defensive when someone is not telling them, with some sort of medical certainty, that their kid has a deficiency or disability . . . and so they’re not forming this impression, this stigma, about being told that their kid is deficient, or that there is something ‘wrong with’ him or her. As the latest Tremaine poll suggests, the choice of words we use, replete with emotional triggers, remains a tremendous source of confusion – especially in communities of color, where these words often act as conversation stoppers rather than starters.“We need to better address these issues in every ZIP code in America, not just those that are most convenient – so we hope that future polls will examine the data by race and income as well. And we need to probe more deeply, to determine whether we are tolerating an inconsistency or not: for example, through focus groups, we could ask teachers and administrators why they feel qualified . . . how regularly they interact with kids who have special needs . . . and how they know that they’re making progress. How do we make better use of social media to engage more parents and build a movement?   “On the policy front, we need to build a stronger case for professional development of teachers – and some of that could come from more robust accountability measures, based on tests that can be customized to fit different learners (for instance, test students on their knowledge rather than on their ability to take tests). “On the non-policy front, how do we make better use of social media, to engage more parents and build a movement? Some of this relates to establishing rights for parents that don’t exist now, especially regarding access to information. In a lot of communities of color, or low-income communities where schools are struggling, the schools do not want to release data, even in the aggregate, because it’s not positive. “Parents should be able to see how their own children are performing – what they are struggling with, and what the school is doing to address those struggles. This is a particularly acute issue in inner-city schools, because there are so many other challenges.
 I’d like to see more self-advocacy, as opposed to a 'have and have not' approach regarding provision of services.
"I’d like to see more self-advocacy, directed toward an empowerment model, as opposed to a 'have and have not' approach regarding provision of services. "It would be great to use social media to build communities and conferences, to expand the dialogue and bring it forward. I know that Ben Foss at Intel, and David Flink at Project Eye to Eye are thinking about things like that. I’d like to see more self-advocacy, directed toward an empowerment model, as opposed to a “have and have not” approach regarding provision of services. Naturally, in a system that educates 50 million kids in America, some legal terms and processes need to be in place, to ensure fairness and program effectiveness – but beyond that, creative concepts can come from creating a community.  “In terms of RFB&D’s own community-building efforts, you have such a great legacy, in so many respects, with audio recordings: thousands of people whose lives have been helped because they’ve had access to those resources. As for broadening your business model to reach more individuals with the types of products and services that they need, that’s an admirable goal. It will be rewarding and challenging to celebrate that history while also asking individuals what they need to successful in today’s educational environment.”

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