Activism – Advocacy – Action

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Our National Down Syndrome Society (NDSS) Philosophy on Advocacy & Advocate Empowerment

The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome. To that end, as an organization, we are immensely proud of the fact our policy of aggressive, nonpartisan engagement has helped our organization become a highly effective voice for promoting economic empowerment and social change for all people with Down syndrome across all levels of government.

For nearly 40 years, NDSS has worked to educate policymakers — of all political stripes — to advocate and advance an agenda that spans the entire life experience of individuals with Down syndrome; these priorities cut across inclusive education, economic self-sufficiency, community integration, employment, healthcare and research.

Our NDSS National Advocacy & Policy Center supports our non-partisan mission in a number of important ways, including:

  • Working with the U.S. Congress, the Administration, state governors and legislatures — regardless of political party affiliation — to develop legislative and regulatory initiatives that improve outcomes
  • Training and educating parents, self-advocates and others to advocate on the local, state and national levels through our cutting-edge grassroots NDSS DS-AMBASSDOR® Program
  • Organizing and participating in national stakeholder coalitions
  • Developing public- and private-sector partnerships to advance common objectives

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As part of our 2017 efforts, the NDSS Board of Directors — working with our network of over 380 Down syndrome affiliate organizations, self-advocates, families and other members of the Down syndrome community — has established several key legislative priorities, including:

  • Opposing health care reform legislation that makes draconian cuts to Medicaid and other changes that undermine the health care and supportive services that individuals with Down syndrome need
  • Expanding the Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act, an effort originally spearheaded by NDSS where 49 states enacted state ABLE laws, and 23 state ABLE programs are now available to our families
  • Increasing inclusive education across all educational environments, advocating for full funding of the Individuals with Disabilities Education Act (IDEA) so that all students with Down syndrome are able to receive a free appropriate public education in the least restrictive environment (last month, we launched our new NDSS National Inclusive Education Task Force to create more inclusive educational environments for all students with Down syndrome all while ensuring our students are graduating with employment opportunities in a more inclusive workforce and world)
  • Supporting legislation to increase research on congenital heart disease, which affects approximately half of all people with Down syndrome, in an effort to improve long-term health outcomes and allow individuals with Down syndrome to live long, healthy lives
  • Promoting nondiscrimination in organ transplantation by increasing enforcement of federal nondiscrimination laws and enacting state laws to address continued barriers to receiving this lifesaving care
  • Increasing National Institutes for Health (NIH) biomedical research funding for Down syndrome research across all Institutes and Centers

The work of NDSS is designed to help meet our societal obligation to protect the vulnerable. As we continue to move forward, we are confident that through engaging with policymakers from all political parties equally and respectfully — and more importantly, telling our stories — we will continue to advance our values and the priorities of our community.

Join Our NDSS Army!

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Subscribe to our NDSS Action Alerts: Whether you are not sure who your local elected representatives are or you are a seasoned advocate, everyone can get involved by signing up for NDSS Advocacy Alerts. Our NDSS team wants to keep you in the know on what you can do to help support and advance our Down syndrome legislative priorities. A quick phone call or submitting a letter by email both help affect positive changes for people with Down syndrome!

 Join Our NDSS DS-AMBASSADOR® Program: Participants are volunteer advocates committed to serving as liaisons between NDSS and their Congressional delegations. The backbone of NDSS Advocacy programs, our ambassadors are volunteers who build long-lasting relationships with their U.S. Senators and U.S. Representatives.

Join Us in Washington, D.C.: We host our annual NDSS Buddy Walk® on Washington Advocacy Conference each year, and it is the perfect opportunity to join hundreds of Down syndrome advocates from across the U.S. to make a difference for people with Down syndrome. This annual two-day advocacy conference includes a day of training and our NDSS “Capitol Hill Day.” Our 2017 dates are April 10-11, 2018. Stay tuned – our 2018 registration will open in September!

For more information, please visit www.ndss.org.

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From the Battlefield, to the Hallow Ground… to Space – Just a Typical Week at NDSS – #WeirsWeek

“(Almost) four score (divided by two) years ago, our National Down Syndrome Society co-founders brought forth on this continent, a new nonprofit organization, conceived that people with Down syndrome deserved more, and dedicated to the proposition that all individuals with Down syndromIMG_3223e are created equal and are entitled to the same human rights as all other Americans.

It is for us, this great team, to be dedicated here to the unfinished work which needs to be done on behalf of all people with Down syndrome and their families. It is for us to be here dedicated to the great task remaining before us – that we highly resolve and recommit each year to our mission, our self-advocates, our families, our advocates, our athletes, our supporters, our future employers and so many others —that this NDSS shall continue to grow, evolve, advocate and be an organization for people with Down syndrome, by the people with Down syndrome.”

I hope everyone had a great Memorial Day! For me, Memorial Day is always a great day to reflect on the past. I couldn’t think of a better way to spend this Memorial Day – finishing the book Killer Angels to prepare for our 2017 NDSS Staff Retreat at Gettysburg with the Lincoln Leadership Institute this week.

2017 NDSS Staff Retreat 

Our dedicated team spent the first day with the President of the Lincoln Leadership Institute studying the leadership and the Battle of Gettysburg and Civil War on the same grounds where the most influential battle of the civil war was fought. On the second day, we assessed our organization and put in place new strategies and initiatives to support our mission, as the leading human rights organization for all individuals with Down syndrome, to ensure we keep reaching for that “higher ground” and channel great transformational leadership and change – just like Col. Chamberlain accomplished in the Battle of Gettysburg. I am incredibly proud of our amazing NDSS tribe, who all even participated in our #TeamNDSS work-out at 6 am, for their dedication, vision, passion and leadership they put into serving all individuals with Down syndrome and their families. Stay tuned for some big updates this summer from NDSS!

One-Year Anniversary of ABLE Accounts

While our team was retreat-ing, we also marked a significant milestone for the disability community. June 1st, 2017 – much like the epic battle of Gettysburg in 186313331149_10208380145237823_8868320026358975276_n – represents a turning point in the disability community’s battle for economic self-sufficiency. We celebrated the one-year anniversary of National ABLE Accounts. Ohio’s STABLE Program opened for business one year ago today and we have a lot to celebrate. According to my friend, Paul Curley from 529 Dash, since March 30, 2017, there have been 7,286 ABLE Accounts opened with over $25.5 million invested – that is simply amazing and I can’t wait for our Q2 2017 updates! You can find more information about ABLE Programs that are
available here.

Please join NDSS and our ABLE Alliance for Financial Empowerment in celebrating the anniversary of National ABLE Accounts being a reality, but remember that this war is not totally won with legislation in the Halls of Congress or by the stroke of a President’s pen. Rather, it is won in the hearts and minds of all our advocates —and who fight on this new battlefield – by making phone calls, meeting with Members of Congress, State Legislators, sent tweets and most importantly – those self-advocates, our best soldiers, who told their personal stories and truly made ABLE a reality!

Houston: We “Don’t” Have a Problem – Building Bridges in Houston This Weekend

I am honored to spend the weekend with so many leaders from the medical and clinical community that work day in and day out to serve patients with intellectual and developmental disabilities for the “Building Bridges Conference” hosted by the American Academy of Developmental Medicine and Dentistry (AADMD) at the Cooley Center, part of the University of Texas Health Science Center at Houston and the National Task Group on Intellectual Disabilities and Dementia Practices. This was a unique conference on health and healthcare for people with intellectual and developmental disabilities – and I had the esteemed privilege to moderate the “Building Bridges Panel” this morning with experts from across the country.

Working with, collaborating with and forging partnerships with these individuals, leaders and organizations, I can tell you the future is bright for individuals with Down syndrome and other disabilities – there are no problems in Houston (other than the humidity) today!

–Onward & Upward – SHW


At the table: The importance of advocating for ABLE

Individuals with Down syndrome need to be able to speak up and be heard. That’s why, as the leading human rights organization for all individuals with Down syndrome, the National Down Syndrome Society, works to be at every table. Today, NDSS will have a 400 person army of advocates on Capitol Hill with self-advocates from around the country telling their own stories to advance critical legislation for all people with Down syndrome.

Advocacy is at the heart of everything we do at NDSS – we advocate at the federal, state and local levels of government to advance policies that make the world a better place for people with Down syndrome. We believe “if you’re not at the table, you’re on the MENU.” At NDSS, we are at every table – advocating in all 50 state capitals, we are at the White House, the United Nations and today, we walk the halls of the U.S. Congress. We will storm the hill today for legislation that spans the life of an individual with Down syndrome – health, education, financial independence, community integration and employment.

We are excited to speak up in support of three bills being introduced today in the Senate and House to enhance the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act of 2014. These measures, known as the ABLE to Work Act, The ABLE Financial Planning Act and The ABLE Age Adjustment Act, are the result of the tenacious leadership of a bicameral and bipartisan group that includes Sens. Bob Casey (D-Pa.), Richard Burr (R-N.C.), Jerry Moran (R-Kan.) and Chris Van Hollen (D-Md.) along with Reps. Pete Sessions (R-Texas),  Cathy McMorris Rodgers(R-Wash.), Tony Cardenas (D–Calif.) and Mike Doyle (D-Pa.).

Aimed at making ABLE accounts more effective in promoting financial independence and more accessible to a wider population of the disability community, NDSS is advocating for the passage of all of these bills in particular, the ABLE to Work Act, which is part of NDSS’ broader #DSWORKS® employment initiative to create meaningful employment opportunities for all individuals with Down syndrome.

NDSS always work to build bridges and advocate in front of any decision maker who can make an impact on the life of one person with Down syndrome. We speak with one, unified voice and advocating for the human rights of all individuals with Down syndrome. This is exactly how we passed the ABLE Act in 2014, when 85 percent of the entire U.S. Congress supported this effort.

Our Down syndrome community is a global army with seats at every table, sharing our own stories of advocacy in their own words – demonstrating that #advocacymatters.

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NDSS is NOW “The Leading Human Rights Organization for All Individuals With Down Syndrome!”

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U.S. Capitol Hill, Washington, DC on January 12, 2017

“Hello to our fellow advocates from across the country and around the world! I am Sara Hart Weir – the President of the National Down Syndrome Society. I am joined by some very special guests, advocates and colleagues today, as we are coming to you LIVE from the US Capitol in Washington, DC! We, at NDSS, are thrilled to share some very exciting news about the future of NDSS and the Down syndrome community with you today!

For almost four decades, NDSS has been an organization that has provided state-of-the-art, comprehensive programming to all individuals with Down syndrome and their families. Today, we couldn’t be more proud of the programs and services we offer our incredible community:

  • Our one of a kind National Advocacy & Policy Center that advocates right here in our nation’s capital and in state capitals across the country on legislative issues than span the life of an individual with Down syndrome!
  • Our National Buddy Walk® Program – the most recognized public awareness event in the world for people with Down syndrome!
  • Our Community Outreach and Resources efforts – which provide the very best information on Down syndrome in the world in over 140 different languages!
  • And, our Public Awareness initiatives, which are showing the world that people with Down syndrome not only deserve to be treated with dignity and respect but also through new campaigns like our #DSWORKS®  Campaign – the first-ever employment campaign for people with Down syndrome that is successfully showing everyone, including those on Main Street and Wall Street, that people with Down syndrome are ready, willing and ABLE to WORK!

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Our core NDSS programs, under our new NDSS strategic plan, won’t change, they are only poised to grow stronger and more impactful. As a 4-Star Charity, one of the highest rankings a nonprofit can receive, we have made the strategic decision to capitalize on our current organizational strengthens, building on the ground work that has been set with three long-term goals in mind:

  1. Increase our capacity and grow revenue to provide our state-of-the-art, comprehensive and critical NDSS programs to the Down syndrome community by investing more resources into our programs
  2. Ensure NDSS, as an organization, has long-term sustainability for decades to come
  3. And expand our “footprint across the entire Down syndrome community” to encourage more individuals, supporters and advocates to join forces with us, “speak up, speak out” to help us make the world a better place for people with Down syndrome

We are reminded the very best ideas, big or small, come from the people, real people with life-changing ideas. Betsy Goodwin, our dedicated founder and board member, started NDSS in 1979 with Arden Moulton around her kitchen table.

The Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act – the most significant disability law since the Americans with Disabilities Act (ADA) is one of our proudest achievements of NDSS – it was also an “idea” born around a kitchen table, just a few miles from where we are standing by five dedicated parents from the Down syndrome community who realized – over a decade ago – the inequities that exist in our system – these advocates rolled up their sleeves and fought, not just for their own sons and daughters – but for all people with disabilities.

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As the President of NDSS, under our new strategic plan, I am very proud and deeply humbled to unveil our new mission statement to you today. NDSS is now:

“the leading human rights organization for all individuals with Down syndrome.”

After all, a human right is “a right that is believed to belong justifiably to every person” – we know that people with Down syndrome still face a complex system that holds them back, we still phase discriminatory practices in education, employment and in the community, we still have outdated stereotypes that perpetuate low expectations.

The time is now. And on behalf of our NDSS Board of Directors and staff with the passionate members of our NDSS DS-AMBASSADOR® program, our dedicated Buddy Walk Organizers, our new NDSS Athlete Ambassadors and along side our strong network of affiliates, we invite you to help make our “army” stronger, and join forces with us on this journey of change focused on “activism, advocacy and action” to create a society full of high expectations, meaningful jobs, inclusive educational and community opportunities for all people with Down syndrome.

Our team, more than ever, is prepared to remain on the front lines to advance proactive policies and legislation that ensures all people with Down syndrome have the same RIGHTS as every other American – 

advocacy matters.jpgthe right to earn a fair wage and meaningful job

the right to be educated alongside peers

the right to save money

the right to live independently

the right to get married

And the right to just live your own life! 

The truth is, we’ve been a human rights organization for a long, long time, we are redefining our presence to make our community bigger and stronger, paving a clear path forward so that people understand that individuals with Down syndrome have their own hopes, dreams and aspirations – and what’s truly needed is a systemic change to allow this to happen.

I hope – whether you’re tuning in from your office computer, your iPhone in the elevator, your Samsung on your coffee break, between meetings on your iPad or from any device at YOUR OWN kitchen table, you join NDSS – we invite you to be part of this movement – a movement which will redefine what having Down syndrome means for decades to come.

Together, we will create a world in which all people with Down syndrome deserve the same the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

From our NDSS family to your family, we are deeply grateful to advocate for and along-side you each and every day!”

-Sara Hart Weir, MS, President, NDSS


NDSS Celebrates the 2nd Anniversary of the ABLE Act and the Launch of #ABLEnow!

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HAPPY 2nd ANNIVERSARY, ABLE!

Two years ago today, on December 19, 2014, President Obama signed the Stephen Beck. Jr. Achieving a Better Life Experience (ABLE) Act (PL 113-295) into law, creating a revolutionary opportunity for people with disabilities to save for their future without jeopardizing critical government supports. The National Down Syndrome Society (NDSS) and Autism Speaks led the advocacy effort behind the passage of ABLE Act, and ever since, we have been working with state ABLE programs to make ABLE Accounts available.

Check out our NDSS 2nd Anniversary Report!

Today, as the Co-Founder of the ABLE Alliance for Financial Empowerment and President of NDSS, I was honored to take part in the official launch of ABLEnow – the Virginia ABLE program – with the Beck Family, Congressman Beyer, Delegate Filler-Corn and Mary Morris, Chief Executive Officer of Virginia529 College Savings Plan! 

In this long, exciting and historic decade-long ABLE journey, it was a moment to see Natalie Beck, Steve’s daughter, now have her own ABLE Account – #ABLEnow! You can watch the press conference from our NDSS Facebook Live feed hereimg_0731-2

Or you can also read our NDSS remarks below:

It is beyond a pleasure and honor to provide remarks at today’s monumental launch of the Virginia ABLEnow Program. As the co-founder of the ABLE Alliance for Financial Empowerment and the President of the National Down Syndrome Society, today is a very historic day – As someone who  worked on the ABLE Act for nearly a decade, I can’t think of anywhere else I would rather be – celebrating the 2nd Anniversary of the passage of the ABLE, making even more history!

The ABLE Alliance was formed earlier this year to support individuals with disabilities in their efforts to achieve financial empowerment and economic independence. The ABLE Alliance is working to:

  • Promote and market the widespread availability and diverse utilization of ABLE accounts to eligible individuals and their families
  • Advocate for legislative and regulatory policies, at both the federal and state levels, to ensure effective ABLE Act implementation and full participation
  • Create and support initiatives that advance financial literacy tools for all persons with disabilities
  • Educate eligible beneficiaries and their family members and caretakers on ABLE accounts, their use as a savings vehicle, how they interact with public assistance programs, and ways to protect beneficiaries from financial abuse
  • Engage stakeholders in advocating for a federal and state public policies that will break down barriers to financial empowerment and economic independence, such as policies that creating meaningful employment opportunities for individuals with disabilities throughout their lifespan

 

It’s only fitting that two years to this exact day – President Obama signed the ABLE Act into law, and we are standing here in Virginia launching the 9th state ABLE program in the US. This state has been the place of so many ABLE firsts – the first state ABLE bill signed into law (by Governor McAuliffe) after the federal passage of the ABLE Act, one of the first states to have the entire Congressional delegation cosponsor the ABLE Act and most notably – the birth of ABLE itself.

 

While many people understand the importance of the ABLE Act and now, ABLE programs like ABLEnow – most folks don’t understand the blood, sweat and tears that went into making the ABLE Act a reality. The idea stemmed from a kitchen table – here in Northern VA by five parents who have children, and in some cases, (now) adults with Down syndrome. These parents came up with the idea for what ultimately became the ABLE Act, and set in motion the most significant disability civil rights legislation to date.

The ABLE Act was ultimately named after our late NDSS Vice Chair, one of those five parents around that kitchen table and my dear friend – the quarterback of the ABLE Act – Steve Beck. Steve was one of the most incredible individuals that I ever met – he was a dedicated father, husband and tireless advocate. He and I pounded the pavement (or marble) on Capitol Hill with Stuart from Autism Speaks for years – we experienced many trials and tribulations, many years (eight, in fact), many Congresses (four of them to be exact), many nay-sayers, small victories, set-backs, some House of Cards moments – but we never gave up. Never once.

Steve taught me so much – And he would probably kill me for quoting a Democrat, “one person can make a difference, and everyone should try.” So many people made the ABLE Act a reality – so many people told their own stories, so many people made phone calls, sent emails, tweets, made trips to Washington, so many advocates made this possible.

And while the ABLE Act took almost eight years and four Congresses to enact, when we did it, it was the most bipartisan legislation of all time – we had 85% of the entire US Congress cosponsor this bill, 381 of 435 in the House, and 78 of 100 US Senators! Steve left a legacy like no other, and now today, his daughter, Natalie can open up her own ABLE account. I would say that witnessing the ABLE Act pass the House, just two years ago with Steve sitting in the House Gallery would have been his proudest moment – but I would say today is!

I sincerely want to thank (and congratulate) Mary Morris and Chris McGee for their dedication, commitment and passion for the ABLE Act – they have been leading this effort for over two years. Mary and Chris have become friends and fellow disability advocates.

For ABLE, this is just the beginning, ABLEnow is a life-changing financial tool – that families all across the country will utilize day in and day out for necessary life expenses. Once again, congratulations to the ABLEnow team!


“Get to Know Me” – How NDSS is Teaching Inclusion in our Elementary Schools

A special thank you to NDSS DS-AMBASSADOR™ Indrani Solomon from Tucson, Arizona for authoring today’s guest blog. Indrani is an amazing and tireless advocate for her son, Pranoy, and all people with Down syndrome! 

screen-shot-2016-12-02-at-9-37-11-amThey say a classroom is only as good as the child it does least for. So many of you would agree.

From what we understand as parents of a child with Down syndrome, students with I/DD need a solid education in life just like their neuro-typical peers, learning alongside their peers and contributing to society one day, just like their peers.

My son, Pranoy, was recognized by the Mayor and the Council-member of Oro Valley this year for promoting inclusion in the community, owing his recognition to NDSS for selecting his photo for the video at Times Square. I remember those meetings at the Town Hall where I would get to see individuals with Down syndrome in janitorial roles representing an agency through which they would get hired and I would walk in to talk about inclusion in the community. I was constantly reminded how lucky our children were to have parents like us believing in our children’s potential and helping build a brighter future for them. Even though it was all new to the Town officials, they still listened and are in the process of collaborating with NDSS to bring in inclusive programs that benefit residents with all abilities. 

The resistance and the ignorance that I get to shatter one educator at a time takes up my day (and night) in many ways. But my husband and I are firm believers of collaboration and peace – doing this in steps, treading softly but surely while we win over hearts and minds.

This year, I asked Sara Weir to help me build this foundation at my son’s school by presenting to 4th and 5th graders. Her knowledge combined with her creativity in finding the most appropriate answers to so many hands raised (young and old) was such an amazing experience for each of us.ndss-poster_ds

A lot of parents came forward to thank me for the presentation – proving these 4th and 5th grade students did share their experience at the dinner table. A couple of them wanted to know the type of Down syndrome Pranoy had. Some of them got to learn their own friends did not like science as much as they did. Some of them wanted to sit at lunch with Pranoy. The questions they asked and the answers Sara came up with made the school library a promising ground for future thinkers, teachers, doctors, lawyers, scientists, artists, activists, legislators, police officers – the list goes on.

What stuck with me was why the math teacher suddenly asked about the Alzheimer’s connection – primarily to think no matter what you do, Alzheimer’s kills this population sooner or later. While Tucson really has a lot of catching up to do, I wish I could change their perception somehow, after all, it is all about keeping the brain active and the heart happy from the get go – and that is what inclusion really is in a nutshell: acceptance and opportunities.

Pranoy’s basketball league coach wanted all eight kids back on his team next season so when I jokingly said that he was being brave by wanting someone kicking water bottles, back on his team again, his thoughtful response was, “that keeps me alert.” This speaks volumes especially when I am surrounded mostly by decision makers in the education field who want change but don’t want to change.

I count my blessings every day. Pranoy’s current reading teacher did not want him in his class a few years ago when she was teaching 2nd grade because she didn’t have the right support system to offer. Fast forward, she has become his favorite teacher, he’s now wanting us to invite her to a beach vacation. At collaboration meetings, she thinks out of the box paving the way for the other subject matter experts to think creatively and believe in Pranoy’s ability to learn as any other. 

Thank you, Sara, for the awareness you have created here in Copper Creek Elementary. Even though weNDSS Poster_DS.png were faced with resistance and ignorance, please know that you emerged as a true leader in spreading love for all children with Down syndrome and helping peers understand how important it is to save for one’s future, embrace diversity and learn firsthand how all of us deserve the same chances in life amidst our differences. 


Thank YOU South Texas… A Few Days Down by the Border!

img_6284_2It’s quite true what they say “everything’s bigger in Texas”! This is especially true for the southern hospitality I experienced over the last few days in the Rio Grande Valley!

I was very honored to be invited to attend a series of events last weekend in Brownsville, Texas by NDSS DS-AMBASSADOR™ Sergio Zarate, one of our original ambassadors, and his family – a weekend that I’ve had saved on my calendar for over a year, since Sergio invited NDSS to participate.

img_3769We kicked off Friday with an inspiring event hosted by Driscoll Heath Plan led, by Lizbeth Shanholtzer, where I talked about NDSS and our advocacy and programming efforts for individuals with Down syndrome. I was so humbled that so many advocates and affiliate leaders from around the state of Texas attended, including: Down by the Border, Rio Grande Valley Down Syndrome Association and Down Syndrome Association of Laredo (who drove over three hours!)

img_6329That afternoon, Sergio and Dolores Zarate, Dr. Manuel and Olga Mendoza and the families of Down by the Border and leaders of the Order of Alhambra, Brownsville rolled out the red, I mean, “yellow”, carpet for me!
State Senator Eddie Lucio and Representative Eddie Lucio III, two dedicated champions for people with disabilities in the state of Texas, honored me with the Texas Yellow Rose and a flag flown from the Texas State Capital in my honor. Wow, this was some incredible southern hospitality! It was such a treat to meet Dr. Esperanza Zendejas, the Superintendent of Brownsville Independent School District, who serves over 500 students with disabilities across the Rio Grande Valley.

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On Saturday morning, it was an honor to attend and speak at the 4th Annual Rio Grande Valley Down Syndrome Association Step Up for Down Syndrome Walk – a special thank you to Deborah Tomai for her leadership in the Rio Grande Valley!

I ended the day by having a “BALL” at the 2016 Children’s Festival in Brownsville – an inclusive festival for all individuals with disabilities and their peers! It was a phenomenal celebration and way to celebrate all abilities!IMG_3891.JPG

I can’t wait to return to the Rio Grande Valley! A very special thank you to the Zarate and Mendoza families for being such wonderful hosts! Thank you for showing Rio Grande Valley that #advocacymatters!

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We’re Partnering With The Mighty!

 

We’re thrilled to announce a new partnership that will bring our National Down Syndrome Society’s (NDSS) resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site, allowing us to get many more people involved with our organization.

The Mighty is a story-based health community focused on improving the lives of people with disabilities and other conditions. Over 54 million people with the United States have a disability, and there’s always a need for more than information. People want to be inspired and know how they can make a difference. The Mighty publishes real stories about real people, including people with Down syndrome.

We’re dedicated to helping people with Down syndrome in their lives. With this partnership, we’ll be able to help reach more people!

We encourage you to submit a story to The Mighty and make your voice heard.


Thanks for CARING Congress!

Last night, NDSS held our 12th Annual CARING with Congress event on Capitol Hill – which over the last 12 years has raised over $1 million for Down syndrome research and directly supports our NDSS Research Innovation and Discovery Fund. Please check out our wonderful pictures from last evening here! As the leading nonprofit in the United States dedicated to advocating for all people with Down syndrome and their families, both at the federal and state levels of government, we are fortunate to have so many amazing Congressional Champions dedicated to advancing effective policies that make the lives of all individuals with Down syndrome better.

Last night, we honored several Member of Congress for their leadership and dedication to the Down syndrome community. These wonderful Champions included:

Rep. Dan Benishek

Sen. John Boozman

Rep. Mike Bost

Rep. Susan Brooks

Rep. Corrine Brown

Rep. Ken Buck

Sen. Richard Burr

Rep. Cheri Bustos

Sen. Bob Casey Jr.

Rep. Mike Coffman

Rep. Kevin Cramer

Rep. Ander Crenshaw

Rep. Debbie Dingell

Rep. Jamie Herrera-Beutler

Rep. Joe Kennedy

Rep. Kevin McCarthy

Rep. Patrick McHenry

Rep. Cathy McMorris Rodgers

Sen. Jerry Moran

Rep. Amata Radewagen

Rep. Keith Rothfus

Rep. Steve Scalise

Rep. Bobby Scott

Rep. Pete Sessions

Rep. Jason Smith

Rep. Paul Tonko

Rep. Chris Van Hollen

Rep. Mimi Walters

We also couldn’t accomplish our vital mission without the important and generous support of our CARING with Congress of the companies, organizations and individuals that have so generously sponsored this year’s event. We had 25 sponsors this year! A big thank you to the following organizations:

AdvaMED

AFSA

Altria

BIO

Coca Cola

CIAB

Disney

Federated Investments

Fluor

FSI

Google

Government Strategies Group, LLC

ICI

IIABA

K&L Gates

Koch Industries

Brinker International

MasterCard

National Association of Realtors

NAMIC

New York Life

PhRMA

Prudential

Rite-Aid

W Group – Darren Willcox

A special thank you to our CARING with Congress dedicated committee members – Host Vince Randazzo, Janet Slaughter Eissenstat, Chip Gerhardt and Charles Symington, along with our entire NDSS Board of Directors, NDSS Staff and all our volunteers – who make this event possible each year!


Congratulations Craig Blackburn & Heather Hancock!

NDSS DS-AMBASSADORS™ Craig and Heather Wed in St. Thomas

WP_20160607_009[2].jpgWedding bells rang this week for two of our NDSS DS-AMBASSADORS™, Craig Blackburn and Heather Hancock! Craig and Heather had a commitment ceremony on the island of St. Thomas. Our entire NDSS family wishes this amazing couple a lifetime of happiness and health together.

Craig and Heather’s journey and love story spans a decade, and Patricia Ehrle, Craig’s mother, has authored a beautiful account of their journey for us to share with the world!

The Beginning

The Craig and Heather love story began in July 2002 at our National Down Syndrome Society (NDSS) Conference in St. Louis. A friend of Heather’s (and now a fellow NDSS DS-AMBASSADOR™), Doris Erhart, saw Craig working at his organization’s Down Syndrome Association booth. Doris approached Craig and said that she would like to introduce him to a young lady from Oklahoma. Doris made the introductions and the rest is history, so to speak. Craig and Heather spent the remaining time, at the conference together, and even had their “first date” by attending a basketball game. As the conference closed, Craig and Heather exchanged contact information and promised to keep in touch.

The communication began upon their return to their homes in Louisiana (Craig) and Oklahoma (Heather). Craig and Heather got to know each other long distance, attending conferences each year and traveling back and forth for important events in each other’s lives. The very first event was when Heather asked Craig to escort her to her junior prom. The Hancock’s opened their home to Craig and his mom, Pat, for the weekend so that both families could get to know each other. It was a great weekend and our families became immediate friends.

There were a few reasons for this: one was that they knew their children cared for each other, another being that their children shared a like disability and lastly, because their beliefs, dreams and goals for their children were so closely aligned. That weekend was the beginning of what have been many miles traveled between New Orleans and Oklahoma City. Craig and Heather have been able to spend time together at the NDSS and NDSC conferences. The conferences have permitted independent time together for Craig and Heather getting to know each other and spending time with their friends that they saw every year. Both families supported Craig and Heather attending family events, important activities for each and holidays. Craig proudly escorted Heather to her senior prom when she was chosen the prom queen of Westmore High School. Heather attended New Orleans events such as Mardi Gras balls when Craig was the Duke. Both Craig and Heather, either were in family weddings or attended together in their own states and other states. They also shared vacations together in other states. Always at the end of these fun and special times, they had to part and return to their lives in separate states.

The Engagement

The relationship grew and in 2006, Craig came to us and asked if he could propose to Heather at the conference. Ken and Pat did not feel, at the time, that Craig truly understood the responsibility and commitment that comes with an engagement so they asked Craig to take steps to demonstrate that he was prepared to make this very important step. Ken and Pat talked to Craig, and explained that they needed to see that he was really serious about committing to Heather and that she was the one lady he wanted to spend the rest of his life with. Craig accepted our decision and took actions to demonstrate that he was mature enough to take the proposal seriously.

A year later, 2007, Craig came back and asked the same question and this time, Ken and Pat said, yes. Craig called Heather’s parents to ask permission, and he was very nervous. The Hancock’s agreed to the proposal and the wheels were in motion. Craig selected an engagement ring and the plan was to propose at the NDSC conference in Kansas City.Proposal 8-3-07 050

Both families attended the conference and helped Craig select a place in which to propose. There were 14 family and friends who attended the dinner. The restaurant was accommodating in working with the families and offered the cellar as the location. There was a private area for Craig and Heather to have a romantic dinner by themselves and the rest of the party down the hall in another room. When it was time for the proposal, all came together to hear and see the proposal. It was a very special moment when Craig took Heather’s hand and dropped to his knee to ask her to marry him. She looked surprised, but quickly said yes. Craig was so nervous that he tried a couple of times to put the ring on the wrong finger. It is a story repeated frequently. We have been working on which finger for the big day!

Craig and Heather returned to the conference and dance, and their engagement was celebrated for the rest of the conference with participants stopping to congratulate them and see the ring. Wow, still brings tears to our eyes.

The Distance

Our two families were concerned about a long distance relationship and how the relationship would be impacted when they spent more than a few days together. Details were worked out and Craig and Heather spend an extended period of time in each other’s states. Craig was able to find a job at a nearby grocery store while he was in OKC and the experience went well. Craig and Heather were able to do volunteer work by assisting at a day camp during the summer when Heather spent time in Louisiana. It was a beneficial experience for, not only, the couple, but also, our families.

Like all couples, it has not always been a smooth path, especially, when you consider the distance. What has worked for Craig and Heather are their like traits:

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Both are outgoing and involved

Both love social activities and dancing

Both enjoy and are good advocates

Both are motivational speakers

Both like being on the go

Both enjoy being silly together

Both enjoy communicating

Also, extremely important, has been the support of the parents, siblings and other family members who truly believe in this couple.

Craig, with the assistance of a grant, purchased and moved into his own condo in 2010. He now lives approximately 25 miles from his parents in another city, Metairie. In the period of a month, Craig left his town where he was raised, went to school, worked, went to church and had friends, moved into independent living alone, started a job at a new location, new church, friends and social activities.

Over the years, both Craig and Heather have questioned why others marry and they are not able to do so. In 2014, Heather’s sister, Jennifer married Joey, and Craig’s aunt, Barbara married Ed. Although very happy for both couples, this only added greater frustration to their own situation and left the question as to why they could not marry. 

Both sets of parents realized that the time had come to find a way for Heather and Craig to be together, just like everyone else. There are significant challenges that individual’s with special needs face that others don’t in this area.

One issue was distance, Craig in Louisiana and Heather in Oklahoma. Other factors are benefit like Social Security and States Waivers. When Craig and Heather marry, Social Security benefits are reduced by 25%. This might not seem like a substantial amount to you and I, but, to individuals working part-time and earn just above the minimum wage, it is significant. Also, when either Craig or Heather moves from their state, they will lose their waiver services. Craig was on a waiting list for 14 years and began receiving the Waiver when he was 24. The Waiver has enabled Craig to have transportation, which permits independent living and a typical life style like others his age.

The solution agreed upon by Heather and Craig, and both parents and families, is that the couple would have a commitment ceremony in St. Thomas on June 7, 2016.

This week, there were sixteen family members and friends who joined Heather and Craig on a Caribbean cruise from Cape Canaveral to the Dominican Republic, St. Thomas, Puerto Rico and Grand Turk. The wedding party and guests departed from the ship in St. Thomas, where Heather and Craig exchanged vows on the beach with a reception at a beach restaurant and later that day returned to the ship. It was a magical, unique and a special day for this couple that have waited so long to say, “I Do”!

To enable Heather and Craig’s friends to participate in celebrating their commitment ceremony, each family will host a reception in their own states. The couple will, again, have to separate after the cruise and go on with their lives in separate states until Craig’s family is able to sell their home, his condo and move to OK. Both Heather and Craig understood and accepted the temporary separation knowing that the day is in the future when they can begin their lives TOGETHER as man and wife. It has been a goal that they have both looked forward to for, at least, nine years since the engagement and feel fortunate that their dream will be realized.

-Patricia Ehrle, Craig’s Mother and Heather’s Mother In-Law

Unfortunately, Craig and Heather’s story also illustrates the archaic, unjust systemic barriers that prevent or discourage people with disabilities from getting married and leading independent lives. Couples like Craig and Heather face reduction of benefits once they tie the knot. Often, those with disabilities have to choose between marrying and continuing to receive full financial benefits from their respective states. Married couples that receive Social Security benefits can receive 25% less in benefits than if they remained individuals in the eyes of the state.

Penalties such as significantly lower Social Security and Medicaid payments, decreased asset limitations and the loss of valuable state benefits as one partner moves across state lines and needs to wait many years for much-needed supports in the new state, kept Craig and Heather apart for many years. As you read above, Craig spent nearly 14 years on the Louisiana wait list in order to obtain his waiver services. The waiver enables Craig to live his life independently. These roadblocks to marriage impact Craig and Heather and many other couples across the county.

NDSS is committed to tackling these basic human rights issues, beginning over the next year and for as long as it takes. We will be meeting with Members of Congress this summer to develop ways in which the Social Security and Medicaid laws can be revised and reformed to reflect the reality that people with disabilities want and deserve the freedoms that the rest of us enjoy:

  • the ability to obtain meaningful employment
  • earn income
  • save their own money
  • opportunity to live where they choose
  • and get married

without loss of critical benefits or incurring other penalties.

On behalf of our entire NDSS family, I would like to congratulate two of our amazing NDSS DS-Ambassadors, Craig and Heather (and their families), on this exciting new adventure and invite you to join us in our efforts to fight for these basic human rights for all individuals with Down syndrome! A sincere thank you to Pat Ehrle for sharing Craig and Heather’s journey with the Down syndrome community and the world!

 

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