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Covid-19 vaccine for people with Down syndrome

By | BGCDSO Families, Community Events, Community Resource, Events, News | No Comments

Today is the day to make our voice heard! Please contact Governor DeSantis and your local legislators to make people with Down syndrome on a priority list of receiving the Covid-19 vaccine. You can call the Governor’s Office at (850) 717-9337.

Use #AShotAtTheShot to help make your voice heard on social media, and on Twitter @flgovRonDeSantis @MarcoRubio @scottforflorida @repbartleman

We respect the right of every family to make their own health decisions. We are not recommending the vaccine; we are simply advocating to ensure our community has access to all the valuable resources and services available.

Thank you for your support!

#AShotAtTheShot

By | BGCDSO Families, Community Events, Community Resource, Events, News | No Comments

ACT NOW: CONTACT YOUR ELECTED OFFICIALS TODAY TO ASK THEM TO ADD PEOPLE WITH DOWN SYNDROME TO THE COVID-19 VACCINE PRIORITY LIST. 

WE HAVE ONLY TWO DAYS LEFT FOR STATEWIDE CALL-IN, MAKE YOUR VOICE HEARD! 

Broward Gold Coast Down Syndrome Organization along with several Down syndrome support groups across the state of Florida are hosting a Down syndrome statewide call in; text; and post on social media, on Thursday, January 28th regarding COVID-19 vaccines and people with Down syndrome.  Please join us in our efforts by contacting your elected officials today.

Use #AShotAtTheShot to help make your voice heard!  @RonDeSantisFlorida @MarcoRubio @scottforflorida

The CDC has added Down syndrome to the list of high risk medical conditions and recommends priority in vaccination for COVID-19.

We respect the right of every family to make their own health decisions.  We are not recommending the vaccine; we are simply advocating to ensure our community has access to all the valuable resources and services available.

Thank you for your support!

Greetings from Broward Gold Coast Executive Director, Bach Todaro

By | BGCDSO Families, Community Events, Community Resource, New Parents Resource, News | No Comments
Dear Friends,
2020 has been a different kind of year for all of us, it’s been such a whirlwind of ups & downs with so much that we have learned from. We can now start to see light at the end of the tunnel as we are starting a new year with hope and health in 2021.
Here are a few important reminders and updates:
– Expectant/New Parent: If you are expectant or new parent of a baby with Down syndrome, congratulations!🎉🎇🎈💙💛 Contact us at www.bgcdownsyndrome.org for your New Parent package. We have “Babies with Down syndrome” books in English and Spanish, along with medical resources waiting for your family. You don’t have to sail this journey alone; we are here to help.
– Med Waiver: If your child with Down syndrome is 3 years old or older and is not on the Medicaid Waiver, make sure to apply for his/her as soon as possible as there is a long wait list at the Agency of Persons with Disabilities (APD). Florida Medicaid waiver will provide services to those with intellectual disabilities. Many people who quality is not even aware of eligibility. The waiver is applicable to all ages. Go to https://www.apd.myflorida.com for more details and to apply.
– Guardianship: By law, parents of an adult child with special needs can no longer make medical or financial decisions for them once they turned 18 years old. Therefore, preparing for their transition is crucial. You can contact Stephanie Schneider at https://www.fl-elderlaw.com/ for more detail.
– Social Security: If your son/daughter is 18 years old, they are eligible for Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are federal programs that provide assistance to eligible children and adults with disabilities. https://www.socialsecurityoffices.info/co/fl-broward
– Broward Gold Coast Membership: Our membership for 2021 will be available soon for your renewal at www.bgcdownsyndrome.org, stay tuned for our email of any changes in the membership. As always, your membership has to be current before you RSVP to any social events, or request for the scholarship.
– SU4DS Walk & 5K Run 2021: As you are aware, our 2020 SU4DS Walk & 5K Run has been postponed to March 20, 2021 at Markham Park. Unfortunately, due to the ongoing COVID-19 pandemic, we are subjected to many restrictions such as: 50% of capacity, no shelter, no electrical outlets available, 6ft social distancing, marks requirements, etc. Markham Park is also one of the testing sites for COVID-19. We as the board have decided to delay our event to October 10th, 2021. We are hoping and praying by then we can all be safely getting together in person.
We wish you and your family a happy and healthy new year!
Sincerely,
Bach Todaro, Executive Director

GLOBAL Medical Care Guidelines for Adults with Down Syndrome

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A REASON TO CELEBRATE Down Syndrome Awareness Month! The GLOBAL Medical Care Guidelines for Adults with Down Syndrome© was published today in JAMA!
Join our authors’ webinar Wed Oct 21 and access this game-changing new resource.
To access the Global Guideline, visit: https://bit.ly/34cghKE
To register for our webinar, visit: https://bit.ly/3dJfuEf
THANK YOU to our authors from Advocate Health Care in Chicago,

University of Pittsburgh Medical Center Kennedy Krieger Institute at Johns Hopkins University, University of Kansas Medical Center, University of Arkansas for Medical Sciences

, and Denver Health-University of Colorado Anschutz Medical Campus SOM.

“The GLOBAL Medical Care Guidelines for Adults with Down Syndrome provide first of-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. This life-changing resource as published in JAMA covers 9 topic areas deemed critically important for the health and well-being of adults with Down syndrome and outlines critical future research needs. Adults with Down syndrome and their caregivers should review the GLOBAL Guidelines with their clinicians to ensure they are receiving care meeting best-practice standards for adults with Down syndrome!”

 

Fun Fact of “Rock Your Socks” for World Down Syndrome Day – March 21st

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Little fun fact of “Rock Your Socks” for World Down Syndrome Day (WDSD) on March 21st:

These are chromosomes.
The one circled is chromosome 21 – note the three copies of the chromosome. This is Trisomy 21 also known as Down syndrome. You and I have just two copies of Chromosome 21. People with Down syndrome have 3 copies.
They look like socks, right? This is where the idea of Rock your Socks for World Down Syndrome Day was born from… simple!

On March 21st, World Down Syndrome Day, we celebrate and raise awareness by wearing our brightest, loudest socks.
And why is WDSD held on March 21st?
21:3 (chromosome 21, 3 copies = 21st day of 3rd month of the year)

#rockyoursocks #crazysocks #downsyndrome #awareness #joinus #LIFEisbetterwithyou #theluckyfew

John Tucker & Rachel Osterbach Born This Way Interview

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Los Angeles, Calif., Sept. 11 – A&E Network’s critically acclaimed and award-winning original docuseries Born This Way’s honors keep adding up – showing that disability is a winning theme. This series starring a cast with disabilities, which received six Emmy nominations this year, won two Emmy’s at Saturday night’s Creative Arts Emmy Awards for Casting for a Reality Program and Cinematography for a Reality Program – after bringing home the Emmy for Outstanding Unstructured Reality Series in 2016.

Produced by Bunim/Murray Productions, Born This Way, an unscripted reality show on A&E, follows a group of seven young adults with Down syndrome along with their family and friends in Southern California. Because its focus is on showing their everyday lives, including employment, efforts for independent housing, loves and more, Born this Way breaks down stigmas surrounding disability.

A Focus on Diverse Casting

Casting Director Sasha Alpert holding her Emmy
Born This Way Casting Director Sasha Alpert

Show creator Jonathan Murray, the innovator behind the first-ever reality-show, The Real World, and many other hit shows including Keeping Up with the Kardashians, said the cast members of Born This Way remind all of us that “every individual has something to contribute.”

“In thinking about the show, we wanted to focus on the ability within the disability and I think that is what is exciting to see,” said Murray. “We also are very proud of the fact that our cast is very diverse. Born This Way has a cast that includes people who are African American, Hispanic and Asian. This is a breakthrough for those minority communities as well.”

This is the first year the Television Academy presented an award for Casting for a Reality Program, which Sasha Alpert and Megan Sleeper won for Born This Way.

Bruce and Sean wearing tuxes, posing for the camera. Bruce holding an Emmy.
Cinematographer Bruce Ready with Born This Way Cast Member Sean McElwee

“Everyone experiences powerful stories,” Alpert said. “By not including a diverse group of people, we are limiting our ability to tell compelling stories. If we make television that doesn’t embrace the various populations around us, we limit the narratives we tell.”

Also during Saturday’s first half of the two-night Creative Arts Award presentation at the Microsoft Theater, Bruce Ready, Born This Way‘s cinematographer, took home the Outstanding Reality Cinematography Emmy. The awards on Saturday evening were presented for reality, documentary and animated programs.

Making More History

Born This Way cast members Rachel Osterbach and John Tucker made history when they became the first individuals with Down Syndrome to present at any major awards ceremony when they presented awards in three categories at the Creative Arts Emmys.

Rachel Osterbach and John Tucker posing in a gown and a tux
Born This Way‘s Rachel Osterbach and John Tucker

“Rachel and John graced the stage like true professionals to rousing applause,” said Gail Williamson, a talent agent who focuses on clients with disabilities at Kazarian, Measures, Ruskin and Associates Talent Agency. “When doctors told their parents about the diagnosis of Down syndrome and listed what they thought their children’s future would be like, they never thought to include they would be presenters at the Emmy Awards some day.”

“In an evening that emphasized ‘inclusion’ and ‘diversity,’ it was powerful to have Rachel and John, who both have Down syndrome, included in the diverse group of award presenters,” Murray added.

RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities, has been honored to consult during the creation of Born This Way and congratulates the entire team for its hard work in achieving this continued recognition.

Jennifer Laszlo Mizrahi, RespectAbility’s president who herself has a disability and who knows what it means to raise a child with multiple disabilities, said: “I am thrilled that the Emmy’s see the value in showing real people with disabilities and their powerful lives on TV. For generations TV-viewers saw people with disabilities through the lens of the Jerry Lewis telethon. Though it was well intended, it showed people’s inabilities and used a lens of pity. Born This Way is empowering and uplifting. It shows, as one member of the cast frequently says, that the public should not ‘Limit me.’”

Increasing Disability Inclusion in Television

The Ruderman White Paper on Disability in Television shows that disability often is absent from mainstream film and television – both the depiction of and, even when a character has a disability, the actor often does not. According to the report, an actor pretending to have a disability plays more than 95 percent of characters with disabilities. Furthermore, according to a recent report by The Media, Diversity, & Social Change (MDSC) Initiative at USC’s Annenberg School for Communication and Journalism, only 2.7 percent of all speaking or named characters in film were shown to have a disability in 2016 (up from 2.4 percent in 2015). None of the leading characters were from an underrepresented racial/ethnic group or the LGBT community.

“By winning the Emmy for casting, A&E’s Born This Way has broken the glass ceiling for people with disabilities of all backgrounds,” Mizrahi added. “Programs like Born This Way that feature people with disabilities, or that tackle disability issues, in a positive light can be successful both critically and financially. Audiences want to see strong, capable role models with disabilities. By focusing on showing these young individuals’ everyday life choices regarding employment, living independently and dating, Born this Way breaks down stigmas surrounding disability.”

Murray agrees that shows like Born This Way and more diversity in Hollywood are good business.

“Hollywood has been really, really slow to recognize the diversity of this country,” he said. “I think it is catching up fast now. And I think it’s realizing that diversity is good business. I don’t think it’s necessarily because it is altruistic. I think they are recognizing that TV shows will do better if they reflect what the country is.”

According to the U.S. Census, one in five Americans has a disability. Currently 70 percent of working-age people with disabilities are not working – even though most of them want jobs and independence. The numbers are even worse for people with Down syndrome. According to the National Down Syndrome Society, there are more than 400,000 people with Down syndrome. Many studies show that people with disabilities, including those with Down syndrome, can work successfully and live relatively independently. The individuals on Born this Way prove that since several are productive employees and one is a business owner herself.

“We have a long way to go in how television shows people with disabilities,” Mizrahi said. “For almost five decades, the Jerry Lewis telethon stigmatized people with disabilities by showing what people with disabilities CAN’T do. Now is the time to show what people with disabilities CAN do.”

Recently, Born This Way was chosen as one of six honorees for the 2016 Television Academy Honors, an award that recognizes “television programming that inspires, informs and motivates.”

“By honoring and embracing diversity on television, Born This Way is uniquely redefining the art of honest storytelling and altering the way society views individuals with differences,” Elaine Fontain Bryant, EVP and Head of Programming for A&E said.

“What I would like to see is that more shows have a diversity to them where the diversity is not the point of the show,” Murray added. “I’d like to get beyond the labels to accurately reflect what is going on in our country today.”

Watch the Creative Arts Emmy Awards on FXX on Saturday, Sept. 16 at 8:00 p.m. ET before the highest-profile categories are awarded in a ceremony telecast live on CBS on Sunday, Sept. 17.

 

Article credit: www.respectability.org.

Employment, Health Care and Disability Policy Update: August 2017

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The LEAD Center’s Policy Update – Employment, Health Care and Disability provides policymakers, disability service professionals, and individuals with disabilities and their families with information about relevant policy developments regarding Medicaid, the Affordable Care Act and related topics, with a focus on improving employment outcomes for individuals with disabilities.

The August 2017 update includes information about the release of the National Autism Indicators Report from the A.J. Drexel Autism Institute; upcoming bipartisan hearings the U.S. Senate Health, Education, Labor and Pensions Committee (HELP) will hold in September; various ways the government celebrated the 27th anniversary of the Americans with Disabilities Act (ADA); HCBS transition plan updates; the release of the 2015 Annual Evaluation Report from Mathematica Policy Research; and more. Download the August 2017 Employment, Health Care and Disability Policy Update.

The LEAD Center Policy Update – Employment, Health Care and Disability is a project of the LEAD Center in collaboration with the Autistic Self Advocacy Network.

Please share this important and timely resource with your network, via social media, etc. Want to share feedback or topics you would like to see addressed in a future issue? Please write us at info@leadcenter.org.