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Share Your Story

Most of us feel comfortable talking about how people with ID/DD enrich our lives.  However, we all know other stories….those  that are difficult to tell and few want to hear.

These are stories of adults who have never spoken a word or communicated in any way, who have exhibited odd or aggressive behaviors, adults who cannot dress themselves or brush their own teeth, adults with bladder and bowel  incontinence wearing diapers, and on and on.

There are also stories of  patience, frustration and triumphs, of pain and hope and sacrifice and love.  These are the real-life stories that our policymakers have to hear before making decisions to eliminate options of  quality housing and employment settings.  These are the stories of  people who cannot, regrettably, self advocate regarding any number of complicated life issues.  Please, take a moment and speak up now, on behalf of your loved one with ID/DD.

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Here are things that keep us up at night concerning housing:

  • What housing services does your loved one receive and are you happy with them?
  • When you hear the word institution, what comes to your mind?
  • Do you agree that congregate living is institutional living? 
  • Do you have a relative or friend in such a setting? Are they happy?
  •  Could they get by in another setting with less support?
  • How would closure of this type of living environment affect them and your family?
  • Do you want your loved one to live with you as long as possible?
  • Would you want foster care as a housing option for your loved one?

Concerning employment:

  • Do you think that mandating a  competitive job in the community for every person with ID/DD is a reality?
  • If congregate work settings were closed without a solid plan for where to place people in these workshops, what would happen?
  • What does meaningful work mean to your loved one or to you?

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