- It brought back memories from when I first heard about the beginnings of deinstitutionalization, and
- I've recently been writing about how I see the similarities between deinstitutionalization and the affect that the Rhode Island decision will have on sheltered workshops.
Originally posted by Stephanie Holland on 5/9/2014 A recent article, Forgetting not an option: Horrors at Willowbrook State School remembered at annual CSI lecture caught my eye for two reasons:
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The new year brings new opportunities and a chance to look back on how far we've come. The beginning of 2015 marks our first anniversary here on The Road. To measure our accomplishments we can look back at numbers:
But what do they really tell us? In the fast-paced world of social media, those numbers may not be too impressive. But, in real life, I think, we've accomplished something pretty amazing. We've started building relationships and supporting each other in a way that's new and different from anything we've had before. We've found a way to use social media as a vehicle to share our experiences. For me, it's the personal connections that really matter. So, you've gone through the process of getting guardianship of your adult child. What happens if your family moves out of state ?
The answer to that question may depend on the states involved. 78-year-old Henry Rayhons is facing third-degree sexual abuse charges for having relations with his wife who was living in a nursing home. The question is, since his wife had Alzheimer's disease, was she able to consent to a physical relationship?
New Light It's been nearly two years since one of our own perished on the floor of his local movie theater. As the world joins the discussion about police interactions with the public, new attention has been given to our personal struggle. Ethan's case has been compared to that of Eric Garner, the man who was choked to death by police on Staten Island. A recent NY Times article: Mr. Garner’s death recalls a similar tragedy involving a less familiar name: Robert Ethan Saylor, a 26-year-old man with Down syndrome who was killed last year in a struggle with three off-duty county sheriff’s deputies at a movie theater in Frederick County, Md. Mr. Saylor was overweight. The officers who killed him were just as inept as Officer Pantaleo and his gang, though with one key difference: When they realized that Mr. Saylor was in distress, they tried to save him. Still, their efforts came too late, because mere moments in a facedown arrest can be deadly. Yesterday, a video was uploaded to You Tube and tweeted with the #JusticeForEthan hashtag. The scenes with an animated representation of the struggle between Ethan and the deputies is difficult to watch, but the two minute+ video contains a good synopsis of the facts as we know them. Rally Planned
If something were to happen to me, would others be able to continue my son’s care with minimal disruption for him?
By Stephanie Holland Creating an advocacy agenda that helps parents, caregivers, and adults who have Down syndrome. ADVOCACY:(noun) public support for or recommendation of a particular cause or policy. In the Down syndrome community, there has been a long hard battle being fought in the trenches from social media, to "the Hill" to get the ABLE Act the attention it deserves. This week, the House voted to pass the bill 404 to 17. There are still some detractors, but overwhelmingly ABLE has been touted as a "huge victory for the disability community." While we at The Road are excited for those whom the bill helps, we also realize that it only affects those who can afford to save for the future. Many in our segment of the community - caregivers of adults - may not be able to benefit from ABLE. Yes, the bill will allow people to save resources and still remain eligible for SSI benefits; but for those who rely on SSI for everyday living expenses, savings accounts are not an option. Things We NeedIn the days to come, we will post a series of articles aimed at educating caregivers and self-advocates on issues that we think are important to our specific community. These issues affect people from all socioeconomic realities.
As we look toward creating an agenda for 2015, these are some of the issues we'll be advocating for.
We invite all of our followers to join the discussion and offer any suggestions on how to proceed on these items. Congratulations to all those who worked on ABLE, especially Sara Wolff ! Celebrate with Us! Help us celebrate the holiday season by participating in our blog hop! Post your stories about Down syndrome and the holidays past, present and future.
Past: Have a favorite holiday story? It can be a previously posted story that you want to re-share. Present: What are your plans for this year? Do you have a favorite tradition, recipe, or craft? Future: What are your hopes for the new year? What will you be focusing on as you plan for your loved one? If you have a story but don't have your own blog - just let us know and we'll share it for you! For bloggers, click on the "add your link" button below. If you post, please be sure to visit some of the other posts and share the holiday love!
He tells the story about how Quincy Jones saw DeOndra on a music video that they both appeared in – Blame It on the Alcohol – and introduced her to the people at Global Down Syndrome Foundation where she became an ambassador.
"Action expresses priorities."What we know : ABC News reported this in 2001: "The National Down Syndrome Society said the study indicates a "serious disparity that really needs to be addressed."" A position statement from NDSS says: "It is clear that more needs to be done that is specifically targeted to those who are black and of other races." In 2012, another study found:
In October, 2014, super model and spokesperson for Global Down Syndrome Foundation is quoted in She Knows:
How do we Express Priorities?There is very little awareness about this issue within the Ds community. Action is needed.
Ask all of our national organizations
Help us make this issue a priority. |
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