TWENTYONE Blog

COVID-19 Emergency Childcare Subsidy

Emergency Childcare Subsidy Program

The North Carolina Department of Health and Human Services (NCDHHS)

is providing financial assistance to help essential workers afford child care and bonuses to child care teachers and staff who provide care during the COVID-19 crisis.

Essential workers are defined in Governor Cooper’s March 27th Executive Order 121.

Financial assistance is available to parents who are essential workers and caregivers who meet the following criteria:

  • Their income is below 300 percent of the poverty line
  • They are an essential worker fighting COVID-19 or protecting the health and safety of communities
  • They feel they have no other viable child care options available to them.

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FREE Down Syndrome T-shirt

Get a FREE t21  T-shirt to raise awareness for Down syndrome.

The majority of NCDSA funding comes from individual donations received throughout the year and during Buddy Walk season. NCDSA has a broad audience of supporters who lessen the fundraising burden on the families of individuals with Down syndrome who rely on NCDSA.

There are two ways to get a FREE t21 Down syndrome awareness t-shirt:

Peer to peer fundraising

P2P fundraising is when supporters of NCDSA ask their network of friends and family to make a contribution to NCDSA, allowing individuals to raise money on behalf of a NCDSA via online fundraising pages. This method enables people to use their social networks to maximize the impact of their fundraising. Online fundraising is easy to set up and you can personalize your appeal and ask your network to share on social media. Set up a Facebook fundraising page by April 30th and you will receive a free t21 Down syndrome awareness t-shirt!

Join the T-21 Club

Recurring donations are easy for donors to set up and assures your ongoing contributions directly benefit NCDSA. Recurring donations help NCDSA with budgeting and planning throughout the year. Join the t21 Club by setting up a recurring donation of $21 or more by April 30th and receive a free t21 Down syndrome awareness t-shirt!

Facebook Fundraiser

Recurring Donation

Covid-19 and Down Syndrome

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

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.

Learning and Down Syndrome

Best Practices and Resources for Online Education in Ds (with Dr. Sean Smith) Down Syndrome Center of Western Pennsylvania Podcast

Accessible Chef is a collection of free visual recipes and other resources to help teach cooking skills to individuals with disabilities. 

National Down Syndrome Congress Online Learning Series is a three-part series designed to help parents and educators make the jump from the classroom to online learning. Presented by Sean J. Smith, a professor of Special Education at the University of Kansas and an NDSC Board member, these sessions focus on the various tips, tools, and techniques to maximize online learning for students with disabilities.

National Center for Accessible Educational Materials provides resources to support students who need accessible materials and technologies while learning remotely during the COVID-19 crisis.

Distance Learning for Special Education provides resources by educators and families from around the world. It is a collaboration to support the needs of students with disabilities during the COVID-19 pandemic. The materials are open source and may be adapted to fit your child or student’s need. They may not be used for purchase.

Making Music provides a list of free events that will be streamed via linked Facebook or YouTube Pages.

Reading A-Z (Email us at info@ncdsalliance.org for login info.
Description: Delivered over the Internet, Reading A-Z is a constantly changing program. Each month, Reading A-Z adds new books, lesson plans, and other resources, thus continually expanding its wealth of materials. The website has more than 2,500 downloadable books (including English, Spanish, and French versions) and thousands of teaching and learning materials.

National Down Syndrome Congress Resources and Support Services offers a variety of educational and exercise programs.

Parent/Guardian Rights

Hospital Transfer Form for people with developmental disabilities with suspected COVID-19. The form, once completed, will contain pertinent information should your family member be transported to the hospital without their parent or guardian.

Care Rationing Plans – 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 have been updated in an effort 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 NC 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.

Health and Wellness

COVID-19 Information By and For People with Disabilities

Dignity in Health Care Factsheet on rights for people with disabilities and how to include individuals with disabilities in the COVID-19 response to ensure equitable care.

Handwashing Videos

https://www.youtube.com/watch?v=2hm0_sNiN2M

https://www.youtube.com/watch?v=IisgnbMfKvI

Special Olympics School of Strength online video exercises

 

Question and Answers on COVID-19 and Down Syndrome

English Expanded

English Abbreviated

 

P&R sobre COVID-19 y el Síndrome de Down

Versión Ampliada

Versión Abreviada

 

Coronavirus with Dr. Andrew Nowalk, Down Syndrome Center of Western Pennsylvania at Children’s Hospital of Pittsburgh of UPMC Podcast

CDC Coronavirus COVID-19

NC Department of Health and Human Services COVID-19

 

North Carolina Specific  COVID-19 Response

COVID-19 Information from Across State Government

World Down Syndrome Day

 

Celebrate World Down Syndrome Day 3-21

Rock your Extra Chromosome at the
Rock Solid Warrior World Down Syndrome Day Party
Saturday, March 21st
5:30 pm – 7:00 pm

Rock Solid Warrior provides family friendly ninja warrior and rock climbing
Be a ninja for the evening – fun for all ages!
NCDSA will have use of the entire gym for this free private party
Pizza, snacks, and beverages will be provided
Advance registration is required

Register Now

For more way to celebrate view our WDSD E-News

 

Advocacy in Action

Military Wives Address Congressional Committee

Military families face unique problems when faced with a Down syndrome diagnosis. We move every two to three years, making it difficult to work with new school districts and find new doctors. We are often put on a waiting list for care and struggle with the vastly different practices of state school districts.

The Department of Defense assists families with the Exceptional Member Family Program (EFMP). Recently, two brave military spouses told their stories to a Congressional Committee about how EFMP is failing their families. There hasn’t been a hearing on this subject since 2012. Their testimony was so compelling there will now be quarterly updates and town halls on the subject.

Also addressed was the broader issue of school funding for special education. Oftentimes school districts “wait out” military families and deny services because they know we will move. Impact Aid for military children flows to the NC school systems and we want to make sure the aid that is supposed to go for military children with special needs is being used for special education and inclusion programs.

According to the North Carolina Department of Public Instruction “North Carolina is home to the 4th largest military population in the US, including more than 52,000 school age children of active duty military, Guard and Reserve.” https://www.dpi.nc.gov

NCDSA is a critical resource for NC military families to be able to reach out about resources in the local area. We appreciate NCDSA’s support of our transient population.

View the full two-hour Congressional testimony

 

Related article:

Military spouses take EFMP concerns to Congress

Submitted by Rebecca Emerson, Lt. Col. US Army

 

Press Release: North Carolina Down Syndrome Alliance Held 2019 Conference

Media Contact:
Christina P. Reaves, Executive Director
North Carolina Down Syndrome Alliance
(984) 200-1193
7951 Monument Ln, Suite 101
Raleigh, NC 27615
christina@NCDSAlliance.org
www.ncdsalliance.org

FOR IMMEDIATE RELEASE

North Carolina Down Syndrome Alliance Held 2019 Conference
The Second Annual NC Statewide Down Syndrome Conference offered valuable resources serving individuals with Down syndrome, their parents, educators and healthcare providers.

RALEIGH, NC (November 18, 2019) – Christina Reaves, Executive Director, announced today that more than 210 attendees gathered at the North Carolina Down Syndrome Alliance’s 2019 Conference held November 16 at Wake Tech Community College campus in North Raleigh. This conference offered resource exhibits, a networking lunch and 18 breakout sessions (three presented in Spanish) providing information and resources to families, educators, healthcare providers and older teens and adults with Down syndrome.

Breakout session topics included Circles of Support – Benefits and Services, Speech, Language and Literacy Among Students with Down Syndrome, and several others covering education, behavior, assistive technology, Tweens and Teens, and advances in Down syndrome research. The plenary speaker, Dennis E. McGuire, LCSW, Ph.D. discussed Promoting Strengths and Adaptive Resources in Persons with Down Syndrome in his keynote address. Several people with Down syndrome had roles at the conference including Sam Hening who presented about his journey to independence, while Matthew Schwab promoted his public speaking business.

“This was a full day of learning, working and sharing to benefit individuals of all ages with Down syndrome,” said Christina Reaves. “We continue to expand our reach throughout North Carolina to provide programs, workshops and support for individuals with Down syndrome, their families and the communities where they choose to live.”

Silver sponsors for this event included the North Carolina Council on Developmental Disabilities, The Arc North Carolina, and Cardinal Innovations Healthcare.

About North Carolina Down Syndrome Alliance (NCDSA)
The NCDSA’s 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. It 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.

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Press Release: North Carolina Down Syndrome Alliance Announced at Triangle Buddy Walk

Media Contact:
Christina P. Reaves, Executive Director
Triangle Down syndrome Network
(984) 200-1193
7951 Monument Ln, Suite 101
Raleigh, NC 27615
Christina@tdsn.org
www.ncdsalliance.org

FOR IMMEDIATE RELEASE

North Carolina Down Syndrome Alliance Announced at Triangle Buddy Walk
Services for individuals with Down Syndrome expanded throughout North Carolina.

RALEIGH, NC (October 8, 2019): Christina Reaves, Executive Director of the Triangle Down Syndrome Network (TDSN) has announced that the North Carolina Down Syndrome Alliance (NCDSA) has been formed to reflect the expansion of services for individuals with Down syndrome throughout the state of North Carolina.

“Our vision is to expand our NC Parents First Call Program, educational, and support programs across North Carolina by serving all of North Carolina’s 100 counties,” said Reaves. “We are committed to establishing local community groups in under-served areas and partnering with local non-profits, ensuring every baby born in North Carolina with Down syndrome receives a joyous welcome and parents receive vital support and resources.”

As of January 1, 2020, the transition to the North Carolina Down Syndrome Alliance will be complete. The expansion will continue in early 2020 and include a three-phase roll out. The three phases will consist of medical outreach, identifying families of individuals with Down syndrome, and implementing the NC Parents First Call program in counties not currently served by local Down syndrome support agencies. Newly formed local community groups will begin to serve families in other geographical areas. Families currently served by the TDSN will belong to the Triangle Community Group. The Eastern NC Family Group will continue to serve families in Beaufort, Pitt, Lenoir and Craven Counties. The NCDSA will open a satellite office in Eastern NC to serve that region of the state not already served by our partners. As part of the expansion the NCDSA will create the Southeastern Community Group and the Sandhills Community Group. Each community group will have trained new parent mentors, volunteers, advocacy, programming, and social events consistent with the needs of the area it serves.

It is an exciting step for the newly formed North Carolina Down Syndrome Alliance. It is our goal and vision to empower, connect, and support individuals with Down syndrome and expand our partnerships with the medical community and other community organizations. It is a critical step to serve families in under-served areas. We must empower and equip individuals with Down syndrome to reach their unlimited potential. People with Down syndrome can be, and are, productive members of society and should not be defined by the fact that they have Down syndrome. It is our goal that others see beyond the characteristics of Down syndrome and see each person for who they are.

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.

Volunteer Spotlight

Triangle Down Syndrome Network is excited to acknowledge Javier Toro for his awesome work in the Down syndrome community, including his volunteer work with our organization! At 14 years old, Javier is the middle child of three who just began 9th grade at Cary High school. He is sandwiched between his older brother, Pepito, and younger sister Mia, who has Down syndrome. In his free time, he plays baseball for the town of Cary and also volunteers in the Pals Program at Gigi’s playhouse. At Reedy Creek Middle School he was a Peer helper in the Special Education Classroom.

Continue reading “Volunteer Spotlight”

ED Reflects on Goals for TDSN

Executive Director Reflects on Goals for Triangle Down syndrome Network
Christina Reaves says much has been done but there is much more to do.

Fear…Denial…Confusion…These were the emotions, among others, that Christina Reaves felt when her newborn baby, Emmaleigh, was diagnosed with Down syndrome. She had so many questions but didn’t know where to go for answers. Some resource information was given to her but not nearly enough to help her navigate or prepare for the challenges her daughter would face. She felt very alone.

By the time Emmaleigh was four years old, the gap began to widen. She was advancing slower than her typically developing peers. That summer was particularly difficult for Christina until one day, completely by chance, she met four other mothers of children with Down syndrome, by the pool, of all places.

Christina spent time talking with these moms, knowing they were not judging her, that they completely understood what she was going through. She left the pool that day in tears, comforted by their support and not feeling so alone. She registered for her first Buddy Walk and applied for a job at the Triangle Down syndrome Network (TDSN) that day.

Continue reading “ED Reflects on Goals for TDSN”