P is also for “people” and “professionals”
By Sue Joe of the National Down Syndrome Congress
And since the P in Phoenix also sounds like F, let’s go ahead and make the leap that P is for Families!
P is also for “people” and “professionals” By Sue Joe of the National Down Syndrome Congress Phoenix is the host city for his year’s NDSC Convention in June, and it’s where we’ll be bringing together people (that’s you!) and professionals in the Down syndrome world, and let the learning begin. Really, there is nowhere else on earth that you can get this kind of opportunity for education and sharing under one roof. And since the P in Phoenix also sounds like F, let’s go ahead and make the leap that P is for Families!
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by Kristen McKiernan of The Arc
The Arc is the largest organization in the country advocating for and serving people with intellectual and developmental disabilities (I/DD), including Down syndrome. We have a rich 60 year history of advocacy and grassroots organizing that continues today through our nearly 700 state and local chapters nationwide. Our mission has always been to promote and protect the human rights of people with I/DD and actively support their full inclusion and participation in the community throughout their lifetimes.
At the national headquarters in Washington, DC, we currently maintain 9national programs that are actively changing lives in our community. We also host annual events that bring together families, self-advocates, and professionals to share ideas, inspiration and resources, and we work to support our chapters to advocate at the federal and state level and provide services to their communities at the local level.
People with disabilities, their families, friends, teachers, colleagues, and loved ones have always been a powerful force when it comes to advocacy. Today, your efforts are needed more than ever. That’s why The Arc chose to use the O to talk to you about organizing.
Today we're looking at how advocacy plays out on a policy level and how The National Down Syndrome Society plays an important role in creating change at the federal and state level. Buddy Walk On WashingtonThis week, Josh and I participated in our first Buddy Walk® on Washington (#BWW2015) hosted by the NDSS. We got a chance to me Maryland Representative and member of the Down Syndrome Caucus, Chris Van Hollen. You can also hop over to Raise Expectations and say hi! If you're a regular here on The Road, you'll know that racial disparities and research are important to us. During the #BWW2015 over 150 advocates advocates from across the country met with over 100 Capitol Hill offices and talked about the NDSS legislative priorities for the year. This year, Down syndrome research is part of that list. It was a great opportunity to bring our specific concerns to the attention of lawmakers as one part of a larger agenda. We thank the NDSS for all their hard work - putting this event together and spending countless hours working in the political arena for the benefit of all people who have Down syndrome. From the President of NDSSBy: Brandy Snow and Stephanie Holland We learned about mosaicism at the 321eConference and we asked our friends at IMDSA to share some of that information with our community.
President Brandy Snow tells us what mDs is and how IMDSA helps "Unite unique people in a unique world." Everything Starts at Home This week there is the Buddy Walk on Washington. Big things are being done on the big stage. But, what’s happening at home in your town? The local groups have their feet on the ground, working for the families of their community, helping, teaching, and reaching out. As an example, let me tell you about the Ds group in my city, the Down Syndrome Alliance of the Midlands. As of two years ago I knew nothing, really, about what they do. So I called and... First, They took the time to meet with me and answer my questions personally about what they are doing as an organization. Where are their fiscal priorities? What are their policy priorities and what resources do they offer families in our community? They provided open answers to these questions without doublespeak, this is very important to me. I learned:
All this month we on The Road have shared and are sharing notes about many of the national organizations, their goals and their work. Did you know that there is a national group that helps the local groups? Down Syndrome Affiliates in Action. The DSAIA Director Deanna Thorpe joins us today to explain: Why the Local DSA is So Important
Personally, I like the definition of kindred spirits that I found on The Urban Dictionary: Kindred Spirits Have you ever heard someone say “wait until you have children, THEN you’ll understand?” Parents belong to a sub-group of our society that gives them a different outlook on things than people who don’t have children. If you have one or more children who have a label, who qualify as “special needs,” then you belong to a smaller sub-set of that group. You understand that when someone says “I have an IEP meeting for my daughter today” it could be a very stressful time for them. When we see a child who we think may have the same label as our child, we often give the parents a knowing smile – a look that says “we’re in the same club.”
By: Eliana Peck and Stephanie Holland Justice is something of a hot topic lately. News reports of another person with a disability being mistreated or lost in the system seem to appear daily. One organization that focuses solely on finding justice for our loved ones is the National Center on Criminal Justice & Disability (NCCJD). Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers. Why do police keep seeing a person’s disability as a provocation? Cops keep wrongfully killing the intellectually or psychiatrically impaired. ~ Harold Braswell - Washington Post We asked the The Arc NCCJD to tell us a bit about what they do, and how it relates to a cause near and dear to us here on The Road - #JusticeForEthan. Our thanks goes to Eliana Peck and the rest of the staff at NCCJD for what they do and for taking the time to write this post!
By: Beth Sullivan and Stephanie Holland We asked IDSC President, Beth Sullivan, to tell us a little bit about one of the unique strengths of IDSC: their Facebook groups. Thanks Beth!
If by chance you're not happy right now - we've got just what you need! Today we look at videos that include adults who have Down syndrome, and of course, we start with the one that went viral last year on World Down Syndrome Day.
Okay, you can tell us, were you dancing or at least clapping along?
Possibilities
The videos that get the most attention may have a catchy tune, or make us think about the possibilities for our loved one - or both!
People We Know
By: Edward Rhodes & Stephanie Holland
#JusticeForEthan
Our guest blogger today, put down his camera long enough to write about the process of making "Justice For Ethan - The Movie" and what he sees as #EthansLegacy.
Over the past year and a half this project has taken on a life of it's own. Documenting the progress and momentum created by advocates and legislators in Maryland has been incredibly rewarding. The search for answers has taken the place of accountability working toward addressing the lack of training our civil servants receive on how to interact with people with disabilities.
Read on for more of his thoughts.
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