When the White House Calls…

The White House imageWhitehouse.gov asked us to give you a heads up on a series of teleconference you might find interesting or useful. When the White House calls…we answer – so here’s your heads up.

Starting this Friday, December 3, the White House will begin hosting monthly teleconferences with updates on various disability issues. Also, these calls will be an opportunity for the Obama Administration to introduce people who work on disability policy in the federal government. We’d love to get comments from any of you who join in on the calls to find out what the hot button topics are and if they address concerns that are important to you.

Just for fun, you might also check out whitehouse.gov to see what’s going on. There is a treasure trove of information about the administration, our government and current issues ranging from civil rights to education to healthcare. You can tune into presidential addresses and even follow the Presidential blog, which recently posted an informative analysis on Medicare from the Wall Street Journal.

Call Information

Dial into the teleconference Friday, December 3 at 11:00 a.m. Eastern

(800) 230-1092

Title: Disability Call (use instead of code)

For live captioning, at time of call, log this website.

Image by Davidlat.

Being Thankful

Pumpkin Pie imageWhat are you thankful for this year?

The question is bound to come up as we gather with our family and friends to celebrate Thanksgiving. There are the standard vague answers: health, happiness, loved ones, good food…

This year, however, may we suggest you get a little more specific? Here’s what we at The Arc are thankful for in 2010.

Rosa

Let’s be thankful for a little girl who inspired a loving brother to take action against the “R” word. Thanks to Rosa Marcellino, who has Down syndrome, her family, a slew of supporters from the intellectual and developmental disability community, and a legislator from Maryland, the insulting and hurtful term “mental retardation” was replaced in many federal laws with the term intellectual disability. It may seem a small victory to replace an inappropriate term buried in the legalese of federal legislation, but as we all know, how we refer to people is often representative of how we treat them.

CLASS

Let’s be thankful for CLASS. No, it’s not the character trait you wish your brother-in-law had a little more of…it’s the Community Living Assistance Services and Supports Act. This bill amended the Public Health Service Act to help people with functional impairment and their families pay for the services and supports they need to give them maximum functionality and independence.

Insurance

Let’s be thankful for our health insurance policies. Ok, some of you are giving me weird looks, but hear me out. Thanks to provisions of health care reform legislation, insurance providers will now cover “pre-existing conditions” for children under 19. This means many children with intellectual and developmental disabilities will receive benefits under their parents job-related insurance policies for conditions for which they were previously denied coverage. This will help lift a huge financial burden off the shoulders of families. Although we’re living in a day and age when we should be able to take things like basic health care for granted, we’re just not there yet.

Let us know what you’re thankful for in the comments.

Image by mikecco.

‘I am Not a Disability.’ Eliza’s Story

 

Eliza Schaaf Artwork image

Eliza Schaaf works on one of her projects.

Every student wants to learn. Every artist wants to create. Every person wants an opportunity to be the best they can be. The administration at Southern Oregon University have denied Eliza Schaaf all three.

Eliza graduated high school this year, loves expressing her creativity and decided to take that to the next level in college by enrolling in an art course called Introduction to Ceramics.

“I have always loved learning and I like working with clay,” Eliza says. “I just wanted to take a course and learn the basics of pottery with other college students my age.”

However, university officials have shut her down. Just seven classes short of completing the requirements for the entire course, Eliza was removed from class. University administrators told Eliza:

“At this time, Southern Oregon University does not offer a program specifically designed to provide specialized learning opportunities for students with intellectual disabilities. We have determined that even with the support of the accommodation(s) available at the post-secondary level, you are currently not otherwise qualified to meet the academic standards necessary to participate in this course.”

Read the rest of the letter.

Eliza has Down syndrome, and had attended previous classes with the help of a personal assistant. Eliza’s art projects were progressing nicely (see the photos for proof!), and now all she wants to do is finish them.

In her words: “I have never thought of myself as being disabled. I am not a disability. I am a person who loves to learn.”

You’re totally missing the point. That’s what The Arc would like to say to the administration at Southern Oregon University.

It’s not just about what she might reasonably be expected to learn. It’s not just about how much she “gets” out of what’s going on. It’s not just about academic progress. It’s about allowing her to participate in the college experience to the best of her ability, alongside classmates who support her.

What Can You Do?

Plenty.

  • Visit Eliza’s blog, and read her story.
  • Sign the petition in support of her continuing class.
  • Spread the word via social media. Share this post with your Facebook friends.
  • Tweet about it using the hash tag: #4eliza
  • Make a donation to The Arc, so we can help Eliza, and cases like hers, directly.

Marty Ford Appointed Acting Staff Director of the Disability Policy Collaboration

The Arc and United Cerebral Palsy (UCP) are happy to announce that Marty Ford is now Acting Staff Director of the Disability Policy Collaboration (DPC).  She’ll ensure a seamless transition of leadership in the organizations’ shared public policy office as Paul Marchand prepares to retire in January. During the two-month transition, Paul will retain his public policy portfolio.

“We are very pleased that Marty will assume this critical post. She is one of the nation’s leading advocates on issues that impact our constituency and has ensured that our voices are heard,” said Peter V. Berns, CEO of The Arc.

Marty has an extensive history in federal public policy issues affecting people with disabilities.  She began her career in 1979 working for The Arc of DC joining the national office in 1984. Since 2003, she has represented both The Arc and UCP on Capitol Hill and in the federal agencies on numerous issues, including long-term services and supports (including Medicaid), the Supplemental Security Income program, and Social Security disability issues.

Marty recently served for three years as Chairperson of the Consortium for Citizens with Disabilities (CCD), a coalition of more than 100 national disability organizations. She is currently the Vice-Chair of Advance CLASS, the newly created organization dedicated to the proper implementation of the private, employer-based Community Living Assistance Services and Supports (CLASS) insurance program created by the health care reform law. She is a member of the bars of the District of Columbia Court of Appeals and the U.S. Supreme Court.

Also, Marty was recently honored with the 2010 President’s Award at The Arc’s National Convention in Orlando, FL for the significant impact her work over the past year will have on the success of the intellectual and developmental disability movement and the mission of The Arc.

Miss Convention? Here’s a Wrap-up

Gift imageThere’s plenty of recent posts about Convention 2010 in Orlando on the blog, but just in case you missed any of the action, check out our Convention 2010 Wrap-up page. It has recaps of all of the major happenings at convention, plus a link to our Flickr gallery that includes tons of photos.

Thanks to everyone who made it to Orlando, and we hope to see you next year in Denver.

Image by Canna W.

Branding – What’s the Big Deal?

Bonding Siblings imageThe Arc’s CEO, Peter Berns, was recently quoted in an excellent article about branding nonprofit organizations on the Lighbox Collborative blog, called “Down with branding. Up with bonding!” The article offers nonprofits a new perspective on branding, taking it out of the realm of sales and marketing and putting it squarely in the realm of relationship-building. It points out that a brand encompasses every aspect of an organization, and therefore does not belong exclusively to the marketing team but should be understood and promoted by everyone.

Branding is generally thought of in terms of selling and product or service-and therefore sometimes dismissed by nonprofit organizations who believe they’re not in the sales business. But a big part of selling a product is building some sort of relationship with the consumer, much the same way we build relationships with our constituents, both the people we serve and those who support us.

That is why branding is such a big deal in the nonprofit arena, and why The Arc is undertaking a huge initiative in 2011 to introduce a new brand identity to the world. Branding doesn’t end with a new logo, or new colors or a slick brochure or ad. Branding is carried on every day, by every staff member, volunteer and advocate every time they tell someone about The Arc, organize a workshop, host an event, and even just answer the phone. Read this article and start thinking about how you define and support our brand and what a difference that can make.

Image by Hortongrou.

Families Fight to Care For Children with Disabilities at Home

Healthcare imageCheck out this NPR story reported by Joe Shapiro about families fighting to care for their kids with disabilities at home.  It’s a window into families caring for someone with disabilities and getting long-term health care.  The story highlights The Arc’s position that people in the Medicaid program should have care at home and in the community, not in an institution or nursing home.

You’ll meet Olivia Welter, 20, of Illinois, who like countless thousands, is cared for at home and requires intensive 24-hour care.  She gets life-saving medical care through a program provided by Illinois’ Medicaid program. But since it’s a program for children, she will no longer be eligible for that care when she reaches 21.

It’s expensive to care for Olivia at home – nurses cost about $220,000 a year – less than half the cost of what the state counts as the alternative — having her live in a hospital.  Olivia’s parents, Tamara and John Welter are grateful for what Illinois has done in the past but they figure they’ve saved the state millions of dollars by keeping her at home.

Image by Barky.

Convention Day Two: Honors, New Projects and Reflecting on the Past and Future

The second, and final day of The Arc’s 2010 Convention wrapped up yesterday, and the highlights flowed all day.

In fact, there were so many highlights, I’m putting them into a list! Here’s the top four moments from day two at The Arc’s 2010 Convention:

Margaret-Lee Thompson Award Winner image

Margaret-Lee Thompson, of The Arc of King County, won the 2010 Advocacy Matters! Award.

2. Margaret-Lee Thompson received the Advocacy Matters! award, which was established in honor of the late Lorraine Sheehan. Margaret was chosen to receive the Advocacy Matters! Award because she exemplifies the spirit of Lorraine, who spent her life advocating for the rights of people with intellectual and developmental disabilities.

3. Ann Cameron Caldwell provided an overview on the exciting new Autism Now project, stemming from a $1.87 million grant awarded to The Arc by the Administration on Developmental Disabilities in September.

Sharon Lewis Plenary image

Sharon Lewis, Commissioner of the ADD, spoke at one of the plenary events.

4. Sharon Lewis, Commissioner of the ADD and Kathy Greenlee, Assistant Secretary for the Administration on Aging, spoke at plenary sessions. Plus, Melody Musgrove, Director of the Office of Special Education, also took the podium at a plenary session.

For more photos of yesterday’s activities, see our Facebook page and our Flickr profile. And remember, you can get breaking updates from our Twitter profile, and follow the conversation via our hash tag: #thearc10.

A Glee-ful Start to Convention 2010

Image and Inclusion Award 2010

Actresses Robin Trocki and Lauren Potter from the hit show Glee received The Arc’s Inclusion & Image Award at the 2010 Convention in recognition of their achievements in television for breaking down barriers, increasing awareness and challenging stereotypes.

Yesterday turned into one of the most memorable days in The Arc’s history. The Arc’s celebrated its 60th year with an opening day at its annual convention that included a sneak peek of our new brand and logo, to be revealed to the public in March, and a visit by Actresses Lauren Potter and Robin Trocki from the hit show Glee.

The stars received The Arc’s Inclusion & Image Award in recognition of their achievements in television for breaking down barriers, increasing awareness and challenging stereotypes. They answered questions from the audience, signed autographs for people and posed for pictures with fans. Both ladies said they love acting and being on the show Glee. They even answered the tough questions, like “Do you have boyfriends?” The answer from both? A resounding yes.

But all fun aside, both ladies, and their family members, emphasized the importance of people with intellectual and developmental disabilities embracing a life full of determination, advocating for themselves all along the way. Their example is an inspiration to many.

For more photos of yesterday’s activities, see our Facebook page and our Flickr profile. And remember, you can get breaking updates from our Twitter profile, and follow the conversation via our hash tag: #thearc10.

Four Ways to Follow the 2010 Convention

The Arc's 2010 Convention imageWhether you’re attending this year’s convention or not, there’s plenty going on that you’ll want to keep up with. Following all the happenings is easier than ever, thanks to the web and social media.

  1. Follow this blog. Seems like a no-brainer, but we just launched, so help us spread the word. We’ll fill this spot with all the news and information coming out of convention. You can find the latest headlines from the blog right on our home page, in the bottom left-hand corner.
  2. Like us on Facebook and follow us on Twitter. Each day, we’ll be posting real-time updates on our social media profiles as well, in addition to meatier updates here. On Twitter, you can use the hash tag, #thearc10 to follow the conversation centered around the convention. If you’re at convention, and tweeting, feel free to jump into discussion.
  3. Visit our Flickr page. Flickr, a place to share photos, we’ll be the first place we post photos each day from convention events. Also, if you’re taking and posting photos there, we invite you to post them to our group page.
  4. Use the Convention website. Our convention website is still the best place to go for all the convention particulars, like the schedule, list of sponsors and exhibitors and more.