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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. 
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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?  Photo from http://www.inquisitr.com/ 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 !  Advocate Sara Wolff testified before a Senate panel in July in support of the ABLE Act.(Photo: U.S. Senate Photographic Studio) |
The RoadMapLife on "the road" of caregiving for adults who have Down syndrome. 
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