TWENTYONE Blog

Call to Action – Phase 2

Response from the State is consistent

People with Down syndrome are being overlooked

Advocacy efforts to have adults with Down syndrome included in the equitable distribution of available COVID-19 vaccines have been denied. The response from the North Carolina Department of Health and Human Services (NC HHS) and the Office of the Governor has been consistent. The State maintains adults with Down syndrome are included in NC HHS vaccine distribution in Groups 1, 2, and 3. This may be true in theory.

Decision makers need to be educated on the reality of the situation.

North Carolina Down Syndrome Alliance (NCDSA) has organized a consortium of North Carolina Down syndrome support organizations from across the state. The consortium is working together on behalf of people with Down syndrome to gain access to currently available COVID-19 vaccines.

Now it’s your turn.

We are stronger together as we work to demand individuals with Down syndrome be prioritized in the State’s Vaccine Plan. It’s as easy as sending an email. Everything you need is provided – letter templates, contact information, social media feeds.

Call to Action for Vaccine Prioritization!
Contact Dr. Mandy Cohen & Governor Roy Cooper
Contact your Members of the North Carolina General Assembly

Contact:

Mandy K. Cohen, MD, MPH Secretary, North Carolina Department of Health and Human Services
mandy.cohen@dhhs.nc.gov

North Carolina Department of Health and Human Services
2001 Mail Service Center
Raleigh, NC 27699

Twitter: @SecMandyCohen
Facebook: https://www.facebook.com/ncdhhs

Governor Roy Cooper
Email: NC Gov. Cooper: Contact Governor Cooper

North Carolina Office of the Governor
20301 Mail Service Center
Raleigh, NC 27699-0301

Twitter: @NC_Governor
Facebook: https://www.facebook.com/NCgovernor/

Your North Carolina State Senator and State Representative
Find your legislators

Letter and Email Template:

Dr. Cohen and Governor Cooper

Your State Senator and State Representative

Additional Information:

NCDSA Recommendations for Deeper Drive Group 1

COVID-19 Vaccines and Down Syndrome Talking Points

CALL TO ACTION for VACCINE PRIORITIZATION

North Carolina Down Syndrome Organizations band together to demand individuals with Down syndrome be prioritized in the State’s Vaccine Plan.

Call to Action for Vaccine Prioritization! Contact Dr. Mandy Cohen & Governor Roy Cooper Now!

 

Letter or Email Templates:

a person with Down syndrome

  family member/guardian/caregiver

COMMUNITY PARTNER/ALLY

 

Who to Contact:

Contact Information:

Mandy K. Cohen, MD, MPH Secretary, North Carolina Department of Health and Human Services
mandy.cohen@dhhs.nc.gov

North Carolina Department of Health and Human Services
2001 Mail Service Center
Raleigh, NC 27699

Twitter: @SecMandyCohen
Facebook: https://www.facebook.com/ncdhhs

Governor Roy Cooper
Email: NC Gov. Cooper: Contact Governor Cooper

North Carolina Office of the Governor
20301 Mail Service Center
Raleigh, NC 27699-0301

Phone: 919-814-2000

Twitter: @NC_Governor

Facebook: https://www.facebook.com/NCgovernor/

 

Why?

The Centers for Disease Control (CDC) included individuals with Down syndrome on the list of conditions that are at increased risk for severe illness from the virus that causes COVID-19. Severe illness from COVID-19 is defined as hospitalization, admission to the ICU, intubation or mechanical ventilation, or death. Following the addition to this list, adults with Down syndrome were placed in Group 2 for vaccine priority. However, the NC Department of Health and Human Services (NC DHHS) restructured the list for vaccine priority when it expanded Group 2 to include adults age 65 and older. The new priority list for vaccines has move adults with Down syndrome to Group 4.

Down syndrome support organizations across North Carolina are working together to bring attention to this matter and have adults with Down syndrome take their original spot on the priority list for vaccines. Please use the following samples to contact Dr. Mandy Cohen, Secretary of NC DHHS and Governor Roy Cooper about your concerns and request an equitable distribution of the available COVID-19 vaccines.

In addition to sending an email or letter, please post comment on the NC DHHS’s and Governor’s social media accounts. Please use the hashtag #IWantMyShot

Who?

 

Join Our Fight for Equitable Vaccine Prioritization

NORTH CAROLINA DOWN SYNDROME ORGANIZATIONS BAND TOGETHER TO DEMAND INDIVIDUALS WITH DOWN SYNDROME BE PRIORITIZED IN THE STATE’S VACCINE PLAN.

PRESS RELEASE

RELEASE DATE: February 3, 2021

NC DOWN SYNDROME ORGANIZATIONS DEMAND VACCINE PRIORITZATION

Vaccine Priority Group 4 is unacceptable and places at-risk lives in unnecessary jeopardy.

Raleigh, NC —North Carolina Down Syndrome Organizations band together to demand individuals with Down syndrome be prioritized in the State’s Vaccine Plan.

A consortium of Down syndrome organizations in the State of North Carolina lead by the NCDSA, includes Down Syndrome Association of Greater Charlotte, Down Syndrome Association of Greater Greensboro, Down Syndrome Association of Greater Winston-Salem, Down Syndrome Network of Onslow and Carteret Counties, Coastal BUDS, and Western NC Down Syndrome Alliance, met Tuesday morning to address the inequitable access of vaccines for individuals with Down syndrome. They developed a plan to educate Dr. Mandy Cohen and Governor Roy Cooper on the impact of the current vaccine priority plan. Multiple studies show that individuals with Down syndrome are at increased risk for COVID-19–related hospitalizations and a 10-fold increased risk for COVID-19–related deaths. To date people with Down syndrome are a group that is currently not strategically protected.

People with Down syndrome are being placed in jeopardy

Individuals with Down syndrome were initially included in Group 2 for vaccine priority. However, with the recent restructuring of the priority list, individuals with Down syndrome have moved into Group 4, placing them back in unnecessary jeopardy.

Increased Risk for Exposure

Many adults with Down syndrome do NOT qualify for priority under Group 1 because they do not reside in Long Term Care settings. A majority live in the family home (with aging parents) and rely on both paid and unpaid personal direct care staff for support. Direct Care Staff typically have more than one client, travel freely in the community, and therefore, increase the risk of exposure of COVID-19 to the individuals with Down syndrome they serve.

Increased risk for hospitalization and critical care

Additionally, the number of adults with Down syndrome living in North Carolina who anticipate receiving the vaccination would not put an undue burden on our healthcare system.  However, the increased risk of individuals with Down syndrome having severe complications will impact the healthcare system by requiring hospitalization and critical care. Research has shown this will lead to poor healthcare outcomes and higher rates of mortality.

The NCDSA is a comprehensive resource 

The North Carolina Down Syndrome Alliance is an effective, compassionate, and comprehensive resource on Down syndrome throughout North Carolina. NCDSA envisions a culture in which all people with Down syndrome are empowered to achieve their full potential and live healthy, productive lives as valued citizens within the fabric of society. Our mission is to empower, connect, and support the lifespan of individuals with Down syndrome, their families, and the community through outreach, advocacy, and education in North Carolina. For more information, please visit www. ncdsalliance.org

Join our fight for equitable vaccine prioritization TODAY!

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CONTACT INFORMATION:

North Carolina Down Syndrome Alliance

Christina Reaves

984-200-1193

christina@ncdsalliance.org

 

Prioritization letters to Governor Roy Cooper

Prioritization letters to Dr. Mandy Cohen

NCDSA Response to Rep. Marjorie Taylor Greene’s Use of the R-word

The North Carolina Down Syndrome Alliance is Outraged…

Raleigh, NC (February 1, 2021) – The North Carolina Down Syndrome Alliance (NCDSA) is outraged at the use of an offensive term by a Member of Congress to refer to individuals with Down syndrome. The word “retard” has no place in the public discourse or the halls of Congress. People with Down syndrome have the right to be treated with the same respect and dignity as any other member of society.

Archaic stereotypes

Elected members of Congress must hold themselves to the highest possible standards of fairness and equity. They should not preserve an archaic stereotype that people with Down syndrome are somehow unworthy of equal and fair representation. The video of Representative Marjorie Taylor Greene that is currently circulating in the media is heartbreaking, offensive, and unacceptable. It is a disappointment and extreme concern that in this video, Rep. Greene refers to her new Congressional colleagues as “retards.” Despite acknowledging in the video that the word “retard” is offensive, she not only uses the term, but goes on to associate “retards” and “stupid people” with people with Down syndrome.  We are shocked to see an elected official use the R-word despite knowing it is offensive.

People with Down syndrome marginalized…

NCDSA is committed to working with Members of Congress to deepen their understanding of the impact of Representative Greene’s words. Her words have hurt our community, but the impact reaches greater depths then the emotional toll. Her words have power and perpetuate a negative stereotype of people with Down syndrome that marginalizes them and relegates them to be second class citizens.

Issues that affect individuals with Down syndrome…

Despite its large representation among the U.S. population, the disability community remains one of the most socioeconomically depressed minority groups in the country. Issues  that continue to affect individuals with disabilities are unemployment, homelessness, and food insecurity. 80.7% of people with disabilities (including individuals with Down syndrome) are unemployed and school age children with Down syndrome do not receive an education equal to that of their non-disabled peers. Outdated and biased views perpetuated by Members of Congress directly impact the quality of life and healthcare outcomes across the lifespan of individuals with Down syndrome.

Remove Rep. Marjorie Taylor Greene from the House Committee on Education and Labor

Members of Congress take an oath to uphold the United States Constitution. However, Rep. Greene’s actions are in direct conflict to that oath. Members of Congress have the power and moral responsibility to correct this situation and remove Rep. Marjorie Taylor Greene from the House Committee on Education and Labor. It is clear she does not have the best interests of people with Down syndrome in mind and cannot faithfully fulfill her duties to represent them in her work on the Committee.

 

Sincerely,

Christina Reaves, Executive Director

Your Child has Down Syndrome

Receiving a Down syndrome Diagnosis

Dear Mom,
Today you will receive a phone call. The information the nurse gives you will hit you like a ton of bricks. For a while, you will view this day negatively. A day that causes you anger, pain, and fear. Not only because of the information that was given, but the way in which the whole thing was handled. A nurse will tell you that your son has Down syndrome and the doctor will encourage termination. In fact, after you give him a somewhat-unsure “No” the first time he asks, he will press on until the second “No” is more firm, and a little angry. You will feel overcome with a variety of emotions. Fear. Sadness. Confusion. Guilt.

The days that follow will be veiled in mourning and shock. You will cancel a trip. You will hug your spouse. You will rub your belly and feel your baby kick as the emotions swirl inside you, above all hoping that your baby will be ok.

But let me tell you how you will see that day three years later.

That phone call will be life changing. You know this. At the time, you think it’s for the worst. Questions will run through your head like, “Who will care for my son when I die?” “Will he go to college?” “Will he get married?” “How will this change our life?” “How am I supposed to do this?”
Three years later, you still won’t have answers to most of those questions. You’ll realize that most parents don’t have answers to those questions. But you’ll see how it will change your life.

You don’t know it yet, but Down syndrome is, in many ways, a blessing.

Yes, life can be harder with Down syndrome. BUT 98% of the time, it is joy. It is celebrations. It is NORMAL. It is appreciation and love and acceptance and understanding and all those things that you were already working on in your life. You will embrace those things, embrace the challenges and the typicality, and you will take this life by the horns.

BECAUSE you are a special needs mom.

You’ve always known that you had an inner grit, an inner toughness. But you will find that you are stronger BECAUSE you are a special needs mom. You were not graced with Ty because you are strong. No. You are stronger because you were graced with Ty.

1,096 days later

you will look back on this day as a day that you found out you were going to change for the better. Day by day, you changed. Day by day, you grew and came to enjoy and accept the gift that is your son. It wasn’t easy to get there, but you did. How could you not? He is an amazing kid.

Today you aren’t receiving bad news.

You’re receiving life changing news. News that you are going to become a better parent and person. News that your life, as you knew it, was not going according to plan. You will realize that change is not bad, but a fact of life. Life being hard does not mean it is bad.

It’s all about perception.

And three years later, your perception will have changed. Three years later, you’ll look back on that day and realized that it was the beginning of a hard, but amazing and fulfilling journey.

Your life isn’t changing for the worse. Or for the better.

It’s just changing.

Embrace it. You’ve got this.

Sincerely,
Ty’s Mom (3 years later)

Covid-19 and Down Syndrome in NC

Covid-19 and Down Syndrome #T21COVID

NCDSA Brings You the Resources on COVID-19 and Down Syndrome in North Carolina

During these unprecedented and challenging times, NCDSA staff continue to work to provide people with Down syndrome and their families valuable resources to get through this crisis. Maintaining your wellbeing, while working (or not working) from home and caring for your family, is not easy. Information is changing rapidly and resources are overwhelming. The following list contains information to help you weather the storm. Please do not hesitate to contact NCDSA at info@ncdsalliance.org. We will get through this together as we are #StrongerTogether.

Disability/Parent/Guardian Rights please review the following information. Print documents and take with you should medical care or hospitalization be necessary.

Care Rationing Plans – BULLETIN: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19) states: The Office for Civil Rights enforces Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which prohibit discrimination on the basis of disability in HHS funded health programs or activities. These laws, like other civil rights statutes OCR enforces, remain in effect. As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.

Hospital Visitation Policies- has been updated  to reduce the transmission of COVID-19. In doing so, many hospitals are enforcing zero visitation policies. Parents and caregivers of both minors and adults with Down syndrome and other disabilities are excluded from these policies. However, parents and caregivers are still being turned away. The Arc of North Carolina has created a document that interprets and explains the rights of people with disabilities, so they are not discriminated against under federal civil rights laws.

Memo to Hospital and Medical Personnel

Caregivers in Hospitals: Medical Care during COVID-19

Safeguard Against Disability Discrimination During COVID-19

Patient Summary for Person with Developmental Disability

 

Down Syndrome and Covid-19 Vaccines

NCDSA takes action and teams up with National Organizations to promote priority vaccines for people with Down syndrome. Check out this news story.

 

 

 

 

 

 

Intellectual and Developmental Disability COVID-19 Vaccination Position Statement by the Down Syndrome Medical Interest Group – USA

Updated March 1, 2021:

COVID-19 & Down Syndrome Resource

Recurso sobre COVID-19 y Síndrome de Down

Centers for Disease Control and NC Dept. of Health and Human Services

CDC Coronavirus COVID-19

NC Department of Health and Human Services COVID-19

COVID-19 Information from Across State Government

NCDSA Wants You!

Happy New Year!

The North Carolina Down Syndrome Alliance is ready to turn our attention to 2021 as we anticipate growth and expansion for NC Down Syndrome Alliance, its Mission and families served by our organization.

NCDSA is searching for new dedicated and compassionate Board Members with a connection to our community. Are you interested in contributing to a rewarding and impactful statewide organization? If you are eager to get involved, please fill out the form below and we will reach out for a conversation and/or interview.

Our current needs include nonprofit experience in the following areas:

-Financial/Accounting/Banking
-Medical Field
-Marketing, Public Relations, Social Media
-Graphic Design
-Diversity and Inclusion
-Media Personality
-Fundraising Campaigns

We look forward to hearing from you as we launch another successful year of outreach, advocacy and education in North Carolina.

Regards,

Lana D. Calloway
President, Board of Directors
NC Down Syndrome Alliance

Record Breaking Virtual Triangle Buddy Walk

Press Release: North Carolina Down Syndrome Alliance’s Annual Buddy Walk takes on a different form, different meaning in 2020

Media Contact:
Christina P. Reaves, Executive Director
North Carolina Down Syndrome Alliance
(984) 200-1193
Christina@ncdsalliance.org
www.ncdsalliance.org

FOR IMMEDIATE RELEASE

North Carolina Down Syndrome Alliance’s Buddy Walk Shifts to Virtual Celebration and has Record Breaking Year Despite Covid-19 Pandemic.
RALEIGH, NC (October 28, 2020): Christina Reaves, Executive Director of the North Carolina Down Syndrome Alliance (NCDSA), has announced that the NCDSA had a record-breaking Triangle Buddy Walk this year. In midst of a pandemic, the statewide non-profit raised $173,000 in 3 short months.
The annual Triangle Buddy Walk is a time for celebration and joining together as a united community to raise awareness for Down Syndrome. The Triangle Buddy Walk is typically hosted in venues around the Triangle and boasts an average attendance of almost 2,000 people. This year, due to Covid-19, the Triangle Buddy Walk looked completely different. The NCDSA created a virtual celebration held in homes, neighborhoods, and smaller venues all over the state. There were 1,125 virtual participants in 87 North Carolina counties and 47 states. The virtual celebration included a Buddy Walk in a Box kit, Virtual Dance Party, and 87 Buddy Walk Teams walking at 3:21pm on Sunday, October 25, 2020. Platinum Sponsors for the event were BB&T/Truist/Suntrust, Allbridge, The Alberque Family, and Cruisin’ for a Cure from Roanoke Rapids, NC. Gold Sponsors included Carolina Commercial Systems and Lindsey and Lindsey.

About the Triangle Buddy Walk
The Triangle Buddy Walk is NCDSA’s largest fundraising event of the year and is responsible for over 50% of the funds needed to operate each year. 100% of the money raised goes directly to support individuals with Down syndrome in North Carolina.

About North Carolina Down Syndrome Alliance
The North Carolina Down Syndrome Alliance is an effective, compassionate, and comprehensive resource on Down syndrome throughout North Carolina. Its mission is to empower, connect, and support the lifespan of individuals with Down syndrome, their families, and the community through outreach, advocacy, and education in North Carolina. For additional information, please visit www.ncdsalliance.org. Follow @NorthCarolinaDownSyndromeAlliance on Facebook, @NCDSAlliance on Twitter and Instagram.

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