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End Discrimination Against Individuals with Down Syndrome Today!

We need you to tell your Members of Congress that individuals with Down syndrome deserve to be able to work, save, and earn their way to independence!

Did you know that adults with Down syndrome are told they cannot save their money? In fact, they will be penalized if they ever have assets of more than $2,000!

Just last week NCDSA received yet another phone call from a sister of a 30-year-old man with Down syndrome who she is caring for after their parents’ death. She was asking for help on figuring out his money. He has so many needs, she has her own children to care for, and yet, they are not allowed to “save” his money to buy him a new communication device.

Continue reading “Urgent Advocacy Action Alert”

Continue reading “Meet the New Executive Director”

The 23rd Annual Buddy Walk raises funds to provide resources to North Carolina individuals with Down syndrome and their families.

Raleigh, NC —The North Carolina Down Syndrome Alliance is hosting the 23rd annual Buddy Walk to raise funds to provide programming and resources to individuals with Down syndrome throughout North Carolina This year, the walk will be held on October 24th at Panther Creek Highschool in Cary, NC 1:00 to 5:00pm.

Continue reading “NC Down Syndrome Alliance to Hold 2021 Buddy Walk October 24th in Cary”

North Carolina Down Syndrome Alliance (NCDSA) 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. NCDSA has a robust New and Expectant Parent Program and Medical Outreach Program as part of the North Carolina First Call Program, a program free of charge. NCDSA provides accurate, up-to-date, unbiased information about the realities of raising a child with Down syndrome in the 21^st century. NCDSA works diligently to dispel the antiquated myths associated with Down syndrome. NCDSA arms health care providers who deliver a prenatal or postnatal diagnosis of Down syndrome to a family with information that paints a truer picture about their family’s future. NCDSA provides new parents with crucial information as well as pairs them with trained parent mentors who walk beside them on their new path in life.

NCDSA believes children with Down syndrome living in North Carolina benefit from Early Intervention Services that provide supports during critical developmental years. Early Intervention Services lay the foundation for building a solid beginning to a child’s education. An education that includes learning beside their peers without disabilities and prepares them for life after high school. NCDSA works to advance the interests of adults with Down syndrome to live and work in the community, often with supports provided by state funded services. When supports and services benefiting people with Down syndrome are fully funded and made available to families, quality of life and healthcare outcomes improve for people with Down syndrome.

To that end, NCDSA believes by providing accurate, up-to-date information about Down syndrome and funding supports and services to benefit people with Down syndrome across their lifespan, people with Down syndrome can achieve a full and productive life. North Carolina House Bill 453 titled Human Life Non-Discrimination Act/No Eugenics was crafted without consultation of NCDSA. The Staff and Board of Directors of NCDSA is committed to the Down syndrome community and is encouraged by other initiatives that work to directly impact the lives of people with Down syndrome in North Carolina. Subsequently, NCDSA encourages its supporters and allies to work to strengthen the programs designed to provide a dignified and substantial future for people with Down syndrome living in North Carolina.

UPDATE 3/11/21: Individuals with Down syndrome may receive the COVID-19 vaccine beginning March 17th as part of Group 4

We have been heard – thank you for your advocacy

North Carolina Down Syndrome Alliance update on Call to Action: Governor Roy Cooper announced new vaccine priority guidelines that include people with Down syndrome in both Group 1 and Group 4.

NC Department of Health and Human Services decision-makers recognize people with Down syndrome are appropriately considered in Group 1 with the broader definition of long-term care to include long-term home care settings. Adults with Down syndrome receiving supports and services in their homes are immediately eligible for vaccination in Group 1. Group 1 now reads:

It also includes people receiving long-term home care for more than 30 days including Home and Community Based Services for persons with intellectual and developmental disability, private duty nursing, personal care
services, and home health and hospice.

Beginning March 24^th, adults with Down syndrome will be eligible for vaccination in the first phase of Group 4 if they do not qualify under Group 1. Group 4 now prioritizes the inclusion of the Centers for Disease Control’s (CDC) list of conditions at increased risk for severe illness due to COVID-19. The CDC added Down syndrome to the list in December, 2020.

Please refer to updated versions of Deeper Dive Group 1 and Deeper Dive Group 4 for complete details:

DEEPER DIVE Group 1 – Health Care Workers and Long-Term Care Staff and Residents
DEEPER DIVE Group 4 – Adults at Higher Risk for Exposure and Increased Risk of Severe Illness (Essential Workers Not Yet Vaccinated and Other Group Living Settings)

In addition to the NCDSA Call to Action with a consortium of Down syndrome organizations across North Carolina, NCDSA worked with state level agencies directly with staff at NCDHHS. NCDSA would like to acknowledge the advocacy efforts of:

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