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Advocacy

Protecting the AAB 

VICTORY! Advocates Protect Independence of the Architectural Access Board (AAB)

GBC Advocacy Representative, Chris Hoeh, joined with a coalition of disability rights organizations to plan and participate in a protest outside governor Baker's office on Friday,  October 25th. The group was acting with urgency since the Baker administration had taken steps that threatened to permanently strip the AAB of its independence which would undercut its "integrity and efficacy to uphold the civil rights of people with disabilities, and with it the ability of our community to work, go to school, find housing and carry out our lives." The following article by Joan Vennochi appeared in the Boston Globe on the afternoon of Monday, October 28, is an excellent description of the protest including our demands and the intransigence of the governor Baker's staff. Chris Hoeh, with his United Spinal affiliation, is quoted at the end of the article

The protest and Globe coverage appeared to have motivated the administration to finally take the concerns of our community seriously. This resulted in the a public meeting with the Secretary of Executive Office of Housing and Economic Development on Friday, November 1. The meeting was attended by over 40 people associated with disability rights organizations (including Pam Daly, Ellen Leigh, and Chris Hoeh from the GBC)  and members of the administration. The Secretary seemed to be open to learning of our concerns. The advocates reiterated the demands to reinstate the independence of the AAB, urgently in regards to the board's ability to hire and supervise a new director, and the need for a direct meeting with the governor regarding the administration's approach to the needs for accessibility of all people in Massachusetts. The Secretary did not make any public commitments on the demands but appeared open to addressing them. The advocacy groups committed to continuing an open dialogue while also preparing to take further action if the governor does not meet the demands. 

For more about the meeting read At a meeting with Governor Baker, disability advocates push for more accessibility

Year-End Bill Protects Complex Rehab Wheelchairs

On Friday December 20 the President signed into law H.R. 1865, one of the year-end spending bills passed in the House and Senate. The signing is important for Complex Rehab Technology (CRT) as it includes permanent protections for Complex Rehab Manual Wheelchairs and components (accessories). It’s a great win for people with disabilities who depend on these specialized CRT products and a credit to the collective advocacy work of the CRT Community over the past two years. 

The CRT provisions will permanently exempt Complex Rehab Manual Wheelchairs and accessories from the Medicare Competitive Bidding Program. Additionally, there is an 18-month suspension in the current inappropriate application of competitive bidding payment rates to Complex Rehab Manual Wheelchair accessories. The suspension is effective January 1, 2020 to June 30, 2021 which will allow for further discussions to achieve a permanent resolution. 

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Blog

The Road to Freedom

When I first began the process to get my license back (mine was revoked after I had Guillain Barre Syndrome and started using a power wheelchair 5 years ago), I was told it would take me about a year to complete. This seemed like a long time, which surprised me and frustrated me. I was ready to drive! It had taken me a while to get to the point of actually wanting to drive again. It was a scary thought to be behind the wheel without the use of my feet to control the pedals.... Continue reading this blog entry.

SCI Watch

SCI Watch is a new section of Chapter Chatter were we will make suggestions on movies, documentaries, internet videos, or TV shows to watch that are either about SCI/D directly or other disabilities that are inspiring, educational, and/or entertaining. If you know of something that you think our members would like to watch please send ryan@sciboston.org an email with the name and why you think is should be seen.

Zach Anner's Youtube Channel

Zach is an American comedian, actor, writer and social media personality that also has cerebral palsy. His Fame started when he submitted a video to Oprah Winfrey for a video contest and won a chance to have his own show. The OWN Network show was a travel Adventure series, where he experienced different things in different cities. He has also made many different cameos in various shows, has a podcast, and has written books. You may actually recognize him from a viral marketing campaign that Zach and BraunAbility teamed up on, tackling the subject of accessible parking spaces or on the hit show Speechless. But I'm here suggesting that you check out his YouTube channel. In his own way, he is educating and advocating for persons with disabilities, all while being hilarious! My favorite videos from him are his work out Wednesdays where each Wednesday he shows you a different workout, in typical Zach style. He has a great sense of humor about his disability that I personally think we all should have. It's important to laugh at yourself and the situations you're in every once in awhile. So here's the link to his channel, keep in mind many of his videos are older, but still are relevant today. Enjoy!

For Sale!

Grit Freedom chair, which is in like-new condition. He's asking $1,600 for it. If you or someone you know can give it a good home. Please email us with your contact information and we will share it with the seller.

"it's a Duet Basic Bicycle (without power assist) for sale. I'm asking $2000 firm for it, and it retails between $6000 and $8000. I just put new tires on it. Pickup is in Boston or Brookline. (I’m willing to deliver to Spaulding Rehab for holiday party if convenient for buyer.) Here is a link to the bike mode" Please email us with your contact information and we will share it with the seller.

Holiday Party Pictures

What great Holiday Party we had yesterday! Thank you to all that came! Can't wait until next year! If you're interested in seeing what events are coming up check out our Events page.

Thank You to Our 2019 Roll to Win Gala Sponsors!

Card Shark Sponsors ($2,500)

High Roller Sponsors ($1,500)

Bob Nichol

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