Author Archive

An Important Resource for Families During Unprecedented and Uncertain Times

Press Contacts:
GLOBAL: Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Ricerhonda@ndsccenter.org | C: (678) 770-6641
NDSS: Michelle Saganmsagan@ndss.org | C: (202) 848-5409
LuMind IDSC: Marly Chevrettemchevrette@lumindidsc.org | C: (718) 825-1303
NTG: Matthew P. Janicki, Ph.Djanickimp@gmail.com | C: (518) 421-3520
DSMIG-USA: Emilie Perkinseperkins@raybourn.com

PLYMOUTH, Minn., DENVER, BURLINGTON, Mass., ATLANTA, NEW YORK CITY, HAMDEN, Conn. March 27, 2020 – Today, an important Q&A on COVID-19 and Down syndrome was published by a consortium of national Down syndrome organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG).

“The unprecedented spread of the Coronavirus Disease 2019 (COVID-19) presents the world with a unique challenge and, in our case, calls for a united response to better understand its impact on the Down syndrome community,” says a consortium spokesperson. “While there are still many unknowns, we believe this Q&A is an important resource for individuals with Down syndrome and their families, and we will provide updates as we learn more.”

This new resource was reviewed by numerous clinicians, advocacy organizations and family members of individuals with Down syndrome, and includes answers to the following general questions:

  • How can I help prevent the spread of the virus?
  • What common symptoms should I look for?
  • What should I consider when it comes to decisions made by, or on behalf of my loved one with Down syndrome?

A key takeaway from the Q&A is that many people with Down syndrome are considered “high risk.” Based on the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), people categorized as “high risk” include those with “underlying medical conditions” that people with Down syndrome are more likely to have. Some examples are lung disease and respiratory difficulties (e.g. asthma, sleep apnea), ongoing heart disease or heart failure, obesity, diabetes, or having lower immune function (e.g. people undergoing cancer treatment or taking drugs for rheumatoid arthritis or lupus that lower immune function).

“As a parent of a young child with Down syndrome I am wondering if he is higher risk and what that even means,” shares Kim Knight of Marietta, GA. “We are glad this resource will give us some advice specific to Down syndrome.”

“I have a child who is forty and I’m not sure how to explain why we aren’t following his routine anymore, what the new routine should be, or if he should see his cousin across town,” said
Jacqueline Olimpio from Olney Maryland. “I am grateful for any advice that can help me navigate this difficult time.”

Q&A organizers are committed to updating this important resource in the following weeks as more information becomes available about COVID-19, regulations related to the disease, and how this affects people with Down syndrome.

This Q&A is informational only and not intended to provide medical advice or related advice. This Q&A should NOT be considered a substitute for the advice of medical professionals or other professionals. Consult with your doctor or other healthcare professional(s) for medical advice.

The Q&A resource has the additional support of the following national and international organizations: Down Syndrome Affiliates in Action, Gigi’s Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation, and T21RS.

To access the resource, families, friends and professionals can visit any of the consortium member websites hyperlinked below, and download a PDF or share the PDF by email, text or social media.

Families, friends, and professionals can visit any of the consortium member websites hyperlinked below to download a PDF or share the PDF by email, text, or social media. An Expanded Version and an Abbreviated Version of the Q&A are available in English and a Spanish version will be available in the next two weeks.

About the National Consortium

Down Syndrome Medical Interest Group-USA (DSMIG-USA)
DSMIG-USA is a group of health professionals committed to promoting the optimal health care and wellness of individuals with DS across the lifespan.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

LuMind IDSC Foundation (LuMind IDSC)
The LuMind IDSC Foundation is a non-profit organization that accelerates research and empowers families to improve health, independence and opportunities for people with Down syndrome.

National Down Syndrome Congress (NDSC)
The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society (NDSS)
The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome.

National Task Group of Intellectual Disabilities and Dementia Practices (NTG)
To advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer’s disease and dementias.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

GLOBAL ROCK YOUR SOCKS CONTEST!

March 26th, 2020 by Global Down Syndrome Foundation

View Photos

Win two VIP tickets to Global’s star-studded
Be Beautiful Be Yourself Fashion Show!

Check out how Global Ambassador Louie Rotella ROCKS HIS SOCKS for Global! Winners will get to see him in action on the Fashion Show Runway Saturday, October 3rd.

Just submit a 30 second video of your BEST dance moves! We’ll do a drawing next Friday, April 3, and announce the winner.

COVID-19 may stop us from gathering in person, but it won’t stop us from ROCKING OUR SOCKS!

Some things to consider if you have Down syndrome or a loved one with Down syndrome

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, March 12, 2020 – Global and our affiliates have received numerous inquiries about whether or not people with Down syndrome are more at risk than typical people when it comes to exposure to the coronavirus disease (COVID-19). Many inquiries are related to health risks and many are also related to spring break travel on planes. With coronavirus disease (COVID-19) being categorized as an official pandemic by the World Health Organization, and after discussing with our affiliates, at this moment in time we are comfortable providing the following information.


GLOBAL UPDATE ON THE CORONAVIRUS DISEASE (COVID-19)


1. Are all people with Down syndrome “High Risk”?

While there is no evidence about how people with Down syndrome are affected by coronavirus disease (COVID-19) versus the typical population, the National Institutes of Health (NIH) and Center for Disease Control (CDC) have categorized certain groups of people as “high risk” in terms of how coronavirus disease (COVID-19) can negatively affect their health:

    a. Older adults
    b. People who have serious chronic medical conditions like: Heart disease, Diabetes, Obesity, Lung disease, and/or Respiratory Difficulties


2. Some Precautions to Consider from the NIH & CDC:

We do know that people with Down syndrome are more likely than typical people to have such chronic medical conditions listed above, and as such, following the NIH and CDC precautions should be considered. You can read about those precautions on the NIH and CDC government websites. For individuals considered “high risk” the websites both recommend “Avoid all non-essential travel including plane trips, and especially avoid embarking on cruise ships” amongst many other recommendations.


3. Extra Precautions to Consider Based on Research

There is research from the CDC and the American Academy of Pediatrics that points to people with Down syndrome being more likely to develop complications due to respiratory viral infections including H1N1 and RSV, and increased rates of hospitalization. Given this research, if you as an individual with Down syndrome, your child with Down syndrome, or your dependent adult with Down syndrome has a respiratory infection, is just recovering from a respiratory infection, has chronic respiratory issues or pulmonary viral infections, you may want to consider taking the same precautions that would apply to someone who is “high risk.”


Some Basic But Important CDC and NIH recommendations to Consider

1. Avoid close contact and stay home when sick – Read about steps to preventing the illness via the CDC website. Please take note:

    Stay home when you are feeling sick (e.g. fever, cough, itchy throat, chills, etc.).
    Notify a healthcare provider if you are experiencing symptoms.
    Put in extra measures to put more physical distance between yourself and others.

2. Practice good hygiene. Read about the importance of handwashing via the CDC website. Below are some highlights:

    Wash your hands with soap and water regularly for 20 seconds.
    Practice cough and sneezing etiquette, always cover your mouth and nose when sneezing, coughing with a tissue or into the crook of your elbow.
    Avoid touching your eyes, nose, and mouth.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

World Down Syndrome Day – Denver

March 12th, 2020 by Global Down Syndrome Foundation

In response to the global spread of the Coronavirus (COVID-19) in the United States, the Global Down Syndrome Foundation is closely monitoring and responding to the situation, taking into account that many in our Down syndrome community are considered “High Risk.”

As a precautionary and proactive measure, the Global team has decided to cancel/postpone public events for World Down Syndrome Day in Colorado.

Global’s World Down Syndrome Day Celebration at the Colorado State Capitol on Wednesday, March 18 has been canceled. While the coronavirus is stopping us from gathering, it will not stop us from celebrating our beautiful Down syndrome community! Stay tuned for ways to engage with us virtually on this special day!

We truly appreciate your support and understanding as we respond to this public health crisis. Stay tuned for more information. If you have any questions, please contact: events@globaldownsyndrome.org or call 303-321-6277.

Gratefully,
The Global Team

Global grants fund a total of 80 jobs for people with Down syndrome in the US and Peru

At DSAIA Leadership Conference; Keynote speaker Zack Gottsagen and Global President & CEO Michelle Sie Whitten with awardees (L-R): Down Syndrome Association of Greater St. Louis, Down Syndrome of Louisville, Down Syndrome Association of Connecticut, Down Syndrome Association of West Michigan, Down Syndrome Association of Delaware (Not Pictured: Down Syndrome Association of Wisconsin, Down Syndrome Network Arizona, Sociedad Peruana de Sindrome Down)

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

Orlando, FL and DENVER, CO February 28, 2020 – Today, Global Down Syndrome Foundation (Global) announced eight new Global Self-Advocate Employment Initiative Grant winners at the national Down Syndrome Affiliates in Action (DSAIA) Annual Leadership Conference.

“We started this grant program in 2016 after attending a DSAIA conference and realized that many Down syndrome organizations cannot afford to employ people with the condition despite advocating for other companies to do so,” said Michelle Sie Whitten, President and CEO of Global. “To address that, we worked with our members on this grant program and we are proud to have supported 80 self-advocates jobs from 20 states and one in Peru! I’m so proud of our team and our members for making this all a reality in such a short time.”

The 2020 winners are: Down Syndrome Association of Connecticut, Down Syndrome Association of Delaware, Down Syndrome Association of Greater St. Louis, Down Syndrome Association of West Michigan, Down Syndrome Association of Wisconsin, Down Syndrome Network (AZ), Down Syndrome of Louisville, and Sociedad Peruana de Sindrome Down (Peru). This year’s Global Self-Advocate Employment Initiative Grants will underwrite self-advocate volunteers transitioning to paid contractors or staff, expansion of hours for self-advocate staff, work-place training, and public speaking training.

Past winners appreciate that Global’s grants can be multi-year, and that many grants have led to leveraged funding.

“Our organization is dedicated to helping our adults with Down syndrome develop vocational and professional skills. We have been fortunate to earn more than one of Global’s transformative employment grants, allowing us to train, prepare, and hire self-advocates for employment especially in our hospital clinic,” says Lauren Camp Gates, Executive Director of Down Syndrome Association of Delaware.

Erin Suelmann, Executive Director of Down Syndrome Association of Greater St. Louis agrees, “Global has helped us expand our ‘Ready to Work Employment Initiative’ programs. In 2018, Global’s grant empowered us to hire an Employment Assistant Ambassador and now we have on-going funding for that position. This year we are so grateful for another grant to grow our staff and hire a Peer Trainer for Social Enterprise.”

2020 grant winners received their award certificates from Whitten and DSAIA conference keynote speaker, Zack Gottsagen. Gottsagen, who starred in the award-winning hit indie film, The Peanut Butter Falcon, is an example of a hardworking individual with Down syndrome excelling in his career. Whitten is an executive producer of The Peanut Butter Falcon and led Global Members in marketing initiatives to ensure the film’s distribution success.

“I wanted to act from the time I was three,” said Gottsagen. “My mom listened to me so I took acting lessons for years. Then two acting coaches wrote a film for me to star in and I won awards for my acting at SXSW and Palm Springs Film Festivals. I showed up, worked hard, got this big break, and presented at the Oscars. It is important that parents and organizations have high expectations and provide training to children and adults with Down syndrome.”

Global membership benefits include supporting life-saving and transformative initiatives, Global’s award-winning magazine Down Syndrome WorldTM, Down syndrome expert webinars, and two first-in-kind grant programs – Global Membership Educational Grants and Global Membership Self-Advocate Employment Initiative Grants. To become a Global Down Syndrome Foundation member or to learn more about member benefits, visit: https://www.globaldownsyndrome.org/become-a-member/.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

What Parents Need to Know About Life Expectancy & Pediatric Medical Care

February 27th, 2020 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 4 of 4


Dr. Fran Hickey, a parent to a son with Down Syndrome with over 30 years experience caring for children with Down Syndrome, provides insights and important takeaways


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), approximately 6,000 people are born with Down syndrome in the United States every year. The average life expectancy of a person with Down syndrome has more than doubled since the 1980s – from 25 years to 60 years today. The dramatic increase in lifespan for people with Down syndrome over the last 30 odd years can be attributed to many factors. First, there was the dismantling of inhumane institutions in the 1980s and early 1990s where people with intellectual and developmental disabilities to be placed in institutions where they were not provided basic medical care, let alone life-saving procedures such as appendectomies or heart surgery. In fact, at the notorious Willowbrook State School on Staten Island, New York, there was no plumbing and residents were injected with diseases in an attempt to discover cures over a sixteen-year period. It was finally closed in 1987.

With deinstitutionalization came more inclusion at home, in schools, and eventually society – all of which also play a role in health outcomes. In addition, since an estimated 40-50% of children with Down syndrome are born with a congenital heart defect, another big factor leading to increased lifespan was advancement in cardiac repair and surgery.

While basic and even clinical research has languished for people with Down syndrome even until recently, medical care has progressed significantly over these same decades. An important resource that has made a substantial difference in health outcomes is the publication of Health Supervision for Children with Down Syndrome by the American Academy of Pediatrics (AAP).

“The best thing a parent can do for their child with Down syndrome is to utilize the pediatric care guidelines set by American Academy of Pediatrics,” says Dr. Fran Hickey, a beloved Down syndrome expert and the medical director of the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

The Sie Center, part of the Crnic Institute for Down Syndrome and an affiliate of the Global Down Syndrome Foundation, was established in November 2010 and now has nine weekly clinics including a feeding clinic, sleep clinic, education clinic, and mental wellness clinic. The center is also home to other renowned medical providers including Patricia C. Winders, PT; Dee Daniels, RN, MSN, CPNP; and Dr. Lina Patel, PsyD. Together, they serve over 1,800 patients from 28 states and 10 countries.

THE NEED FOR A DOWN SYNDROME-SPECIFIC RESOURCE

People with Down syndrome are born with three copies of chromosome 21 instead of two. The result is a dramatically different disease profile whereby people with Down syndrome are highly predisposed to certain diseases (e.g. Alzheimer’s disease and autoimmune diseases) and highly protected from others (e.g. solid tumor cancers, certain heart attacks and stroke). As such they require different medical care visits compared to those in the general population or other intellectual and developmental disabilities.

Despite being underfunded, the Down syndrome community has benefitted from the guidelines organized between 1981 and 1999 by dedicated clinicians, many from the Down Syndrome Medical Interest Group, who drew primarily on their vast experience with this patient population. Then in 2000, with the leadership of Dr. Marilyn Bull and many other contributors, the American Academy of Pediatrics used its resources, vast network, and peer reviewed vetting apparatus to create its first Health Supervision for Children with Down Syndrome. The guideline was last updated in 2011.

The AAP’s Health Supervision for Children with Down Syndrome is a comprehensive report of healthcare guidelines for children with Down syndrome from birth to 21 years of age. While it is designed for the pediatrician and subspecialists caring for child with Down syndrome, there is an 11-page family-friendly version also published by the AAP called “Health Care Information for Families of Children with Down Syndrome.”

A RENOWNED AND BELOVED DOCTOR

Dr. Hickey completed his undergraduate degree at Harvard University and his medical degree at University of Cincinnati College of Medicine, and his internship and residency at Cincinnati Children’s Hospital where he was mentored by Dr. Bonnie Patterson, a national leader in Down syndrome founded the renowned Thomas Center for Down Syndrome and DSMIG. Dr. Hickey is recognized as one of “America’s Top Doctors,” and has received numerous awards including the Maxwell J. Schleifer Distinguished Service Award from Exceptional Parenting Magazine, The Ross Award for Excellence in Ambulatory Pediatrics, the Senior Resident Teaching Award in Pediatrics, the Professional of the Year award, and Lifetime Achievement Award from the Down Syndrome Association of Greater Cincinnati. He and his wife Kris have four children, one of whom has the dual diagnosis of Down syndrome and autism.

Today, Dr. Hickey and his multi-disciplinary team of experts at the Sie Center for Down Syndrome at Children’s Hospital Colorado provide excellent medical care and conduct many research projects related to improving healthcare outcomes through improved medical care therapies, mental wellness and school interventions and therapies, as well as through applying the AAP Health Supervision for Children with Down Syndrome guidelines.

Dr. Hickey encourages parents to work closely with their medical team to determine the proper healthcare plan for their child’s specific needs. “Anyone who is providing care to a child or adolescent with Down syndrome should be aware of common co-occurring conditions and have a specific plan to monitor and evaluate the child’s health,” says Dr. Hickey.

As a supplement to the AAP pediatric guidelines, Dr. Hickey and his “Dream Team” of experts at the Sie Center have developed a simple one-page check-list and chart based on the AAP guidelines that lays out a roadmap of appointments, screenings, vaccines, and treatments. “The AAP has endorsed these guidelines to maximize the health of our children,” Dr. Hickey says. “They are so important to follow as long-term health guidelines and to allow children with Down syndrome to reach their health potential.”

“The AAP guidelines and Sie Center’s guidelines check-list are so important because they provide medical professionals a roadmap on how children with Down syndrome need different medical care,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “For example, a typical child may only get a hearing test if there is some evidence that child is not hearing. For children with Down syndrome who tend to have inner ear issues, they must get tested every year. You can imagine what not hearing does to our children’s lives.”

INSIGHTS AND TAKEAWAYS FROM DR. HICKEY

The AAP 2011 guidelines can be broken down into medical areas of focus and by age group. In september 2019, Dr. Hickey provided an informative webinar to over 100 attendees about the guidelines. Below are key insights and takeaways from Dr. Hickey’s webinar.

NEONATAL (BIRTH TO ONE MONTH)

In an infant’s first 24 hours of life, he/she will receive a physical examination for the state newborn screening, a public health service that tests for a variety of health disorders, including Down syndrome. If there was no prenatal testing and if the clinician feels enough criteria are present on physical examination to diagnose the baby with Down syndrome, then a blood sample should be sent for chromosome evaluation. Providing a diagnosis at birth should be done with care and counseling, and resources should be offered at the appropriate time.

There is a high rate of neonatal complications for newborns with Down syndrome; the overwhelming majority of which can be addressed and/or corrected. According to an article published by the Sie Center representing data from the Colorado mountain (an elevated region), an estimated 73% of newborns require a stay in a Neonatal Intensive Care Unit (NICU),which underscores the importance of appropriate medical readiness and intervention from birth to discharge. Well over half of these NICU stays are driven by additional oxygen needs, and approximately 60% require phototherapy to treat jaundice. Another driver of NICU stays are feeding problems which may require a nasogastric tube (NG tube).

CONGENITAL HEART DISEASE & PULMONARY HYPERTENSION

Congenital heart disease (CHD) and pulmonary hypertension (PH) go hand-in-hand. Since almost half of the babies with Down syndrome are born with a CHD, a newborn echocardiogram is imperative. This will show if and which exact heart abnormalities exist. In addition, every newborn should be evaluated for PH. PH compromises blood flow from the heart to the lungs due to tiny arteries in the lungs becoming narrowed, blocked or destroyed. This slowing or blockage of blood flow to the lungs puts undue stress on the heart.

An estimated 20% of 50% of babies with Down syndrome having CHD will need surgery within the first 4 months. The advancement of infant heart surgery has seen outcomes for all patients with CHD improve dramatically. Even with a more serious CHD that requires open heart surgery, the survival rate is well above 90% if caught in time.

Compared to the typical population with CHD, the prevalence of PH is still high. Signs to look for are hypoxia, polycythemia, obstructive sleep apnea, and feeding problems and aspiration. Keeping children with Down syndrome appropriately oxygenated is integral for prevention and treatment of PH.

HEARING

In the United States, all newborns get a newborn hearing screen. Approximately 20% of newborns with Down syndrome will initially fail. But only 2% have congenital hearing loss. The guidelines recommend a rescreen at 6 months with a Behavioral Audiogram. Hearing tests should continue every six months until 3 years of age after which children with Down syndrome should get their hearing tested annually.

An estimated 30-40% of infants with Down syndrome have stenotic ear canals (narrow ear canals), which makes it difficult to see the tympanic membrane and evaluate hearing. If a child with Down syndrome has stenotic ear canals, he/she should see an otolaryngologist or Ears, Nose, Throat (ENT) specialist for an otoscope with a microscope in order to avoid undiagnosed serous. otitis media and subsequent hearing loss. Clearly, hearing loss will not only impede the development of speech, but may also affect many other developmental milestones.

LEUKEMIA

Every newborn with Down syndrome should have a hematology test called a “complete blood count” (CBC). While only 2% of people with Down syndrome will have leukemia, this is still 10x or even 400x more frequent than in the typical population and more specialized treatments for children with Down syndrome are needed based on their. potentially different anatomical structure and reactions to medications.

Up to 30% of newborns with Down syndrome present with Transient Myeloproliferative Disorder (TMD). Twenty percent of those 30% will go on to get diagnosed with leukemia. Counseling the parents during such a diagnosis is very important. The two leukemia’s children with Down syndrome are more susceptible to are Acute Megakaryoblastic Leukemia (AMKL), a rare form of myeloid leukemia (ages 1-5), and B-cell Acute Lymphoblastic Leukemia (ALL), a common childhood leukemia (primarily ages 5 to 20).

AUTOIMMUNE DISORDERS

It’s estimated that up to 70% of people with Down syndrome have one or more autoimmune disorder. At birth, babies have a newborn state screen that includes measuring thyroid with a test called T4. If a newborn fails this test, they will then have a thyroid stimulating hormone (TSH) test.

Because of the prevalence of autoimmune disorders (e.g. abnormal thyroid, hypothyroidism, diabetes mellitus, alopecia areata) the AAP guidelines recommend TSH screenings at 6, 12, and 18 months. Then starting at the age of 2, testing every year unless there are symptoms of thyroid dysfunction, in which case an immediate test should be administered.

The AAP guidelines have many other important recommendations including testing or obstructive sleep apnea (OSA) at 4 years old (or earlier if there are symptom). Over 60% of children with Down syndrome test positive to OSA whereby they are not breathing during certain times while sleeping. Respiratory illnesses are the cause of 80% of admissions to the hospital for children with Down syndrome, so mitigating exposure and treating ailments quickly is paramount.

The AAP guidelines cover ophthalmology, autism, gastrointestinal issues, and many other important areas. It is exciting to know that the AAP is working on an updated version, that will no doubt provide clinicians and families even more ways in which to ensure the good health of children with Down syndrome.

“While there are challenges, the developments in recent years paint a hopeful picture of medical care for people with Down syndrome, allowing us to help children reach their potential and enjoy their life,” says Dr. Hickey.

As a membership benefit, Global Down Syndrome Foundation hosts a quarterly webinar series on medical and educational topics such as Down syndrome research, healthcare, advocacy, and more. See a recap of Dr. Hickey’s September 2019 webinar on Pediatric Medical Care here: www.globaldownsyndrome.org/globalwebinar-series-fall-2019-recap/


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

WDSD Redirect

February 5th, 2020 by Global Down Syndrome Foundation

ETC

What Parents Need to Know About IEPs

January 29th, 2020 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4


Individualized education programs are detailed learning plans for students K-12 with intellectual and developmental disabilities enrolled in public school. The process of obtaining, developing, and implementing an IEP for your child can seem overwhelming. Knowing what to expect and planning can help streamline the process.


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

UNDER THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA), students with intellectual and developmental disabilities (IDD) enrolled in public school may be eligible to receive free, customized learning plans for their education. Individualized education programs (IEPs) are legally binding plans developed by a team of parents/guardians, teachers, and any other stakeholders that set the course for students with special needs. To obtain an IEP, a child must be enrolled in public school, must be between 3 and 21 years old, have one of 13 intellectual or developmental disabilities, and take eligibility tests administered by the public-school system.

WHAT IS AN IEP?

“An IEP outlines when and where a student will receive instruction, how the student is going to access the curriculum and what curriculum he or she will be accessing … what services will be provided, such as speech-language, occupational, or physical therapy, and who will be providing those services,” says Jennifer Harris, M.S.E., Education Specialist at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, an affiliate of the Global Down Syndrome Foundation.

The Sie Center was the first to embed a full -time education specialist into a Down syndrome medical center in the United States. Harris joined the Sie Center in 2017 and works closely with patients, parents, and teachers to support the education of individuals with Down syndrome. She also works alongside Lina Patel, Ph.D., Director of Psychology at the Sie Center, to help patients navigate the barriers to their education by looking at their unique behavioral profile.

IDEA states that children who are differently-abled should receive a “free, appropriate, public education” in the “least restrictive environment” possible. Children who attend public schools, including charter schools, are eligible for IEPs, but private schools are not required to provide them.

Before a child reaches age 3, families may be eligible through Early Intervention, to receive an individual family service plan (IFSP). This document outlines services young children will receive to support their development prior to entering a public education system — either in pre-school or at home. The team that creates an IFSP includes parents/guardians, professionals such preschool teachers, therapists, any outside advocate or specialist requested by the family, and a service coordinator from the state to help determine needs and implement the plan. When children turn 3, they may transition to an IEP from their IFSP, however you do not need to have an IFSP to apply for an IEP.

EVALUATION TESTS

To start the process of obtaining an IEP, parents/guardians can ask the school district to initiate the evaluation process. The district may also ask the parents for consent to initiate if they have concerns as well. This will begin the assessment process. These assessments involve various tests to determine the child’s specific needs and the most appropriate accommodations for their learning.

Qualification is also based, in part, on whether the condition affects a specific aspect of a child’s learning abilities, such as oral expression, comprehension, or reading, writing, or math skills. Through a variety of tests, they will measure a child’s health, vision, hearing, social and emotional development, motor skills, general intelligence, academic skills, and communication
ability. When the evaluation is finished, the statistical results are presented in a report to all parties involved.

“Results of some of these tests can, potentially, be jarring to parents. No parent wants to read or hear that his or her child scored in a low percentile or significantly below average in certain areas. It is important to understand that this is only a small, fraction of the process,” Harris says. “Testing is fundamental to the process in order to understand the need for services.”

“No one test can be used and no one person can identify a child as having a disability and needing special education, so a variety of assessment tools and strategies must be used to collect relevant functional, developmental, and academic information,” explains Melody Musgrove, Ed.D., Co-Director of the Graduate Center for Early Learning and Associate Professor of Special Education at the University of Mississippi.

There are cases where parents/guardians oppose an IQ test or some standardized testing they feel is not reflective of their child’s ability. While this can hold up the IEP process, it is within a parents’/guardians’ right to not agree with certain testing, and it’s within their right to reject in part or in full the IEP the school presents. There are cases where parents/guardians sue the school to get the services they need, but hopefully legal recourse can be avoided if the family, school, and teachers are all on the same page. There are several avenues that parents and school teams can take to help come to a collaborative middle ground. Many states offer IEP facilitators and options to obtain an educational advocate. These professionals are not attorneys, but they are trained in disability law and can provide an unbiased, fact-based opinion that keeps your child’s educational rights intact.

Although these tests are mandatory, sometimes the methods are flexible and can include verbal and nonverbal formats. Harris encourages families and school teams to look at a variety of cognitive tests to select the most appropriate assessments for the individual child, providing an adequate representation of that child’s skills, capabilities, and needs.

“Your child is still your amazing child, and assessments aren’t going to capture all of the things he or she can do or all the beautiful things that make your kid who he or she is,” she points out. “Look for relative strengths. For example, even if your child is scoring ‘extremely low’ in several categories but maybe just ‘low’ in another area, look at that as a relative strength. Figure out how to draw upon that to support your child’s learning.”

A multidisciplinary team (which simply means professionals from different disciplines, such as special education teachers, psychologists, regular education teachers, and speech language therapists, within the district as well as parents) will determine whether your child meets IDEA’s criteria for special education. If the team deems special education appropriate, your child will be reevaluated every three years.
Reevaluation can take place earlier, if a change in medical condition occurs, your child isn’t making progress in school, or the team suspects that your child no longer requires services.

YOUR IEP MEETING

The First Meeting

Within 30 days of determination of eligibility, the multidisciplinary team is required to develop the IEP in collaboration with the parents and to hold a meeting to review the document.

During the meeting, you’ll review the IEP section by section, including your child’s present level of academic performance, goals for the academic year, how you’ll be informed of progress, special education services the school will provide, accommodations your child will receive, and how and to what degree your child will participate in general education activities.

The school district is responsible for scheduling the meeting, inviting the parents/guardians, and ensuring the proposed time is convenient for them. However, each state has its own timetable for providing notice of a meeting. Parents are not required to attend the meeting but must provide written permission for services to begin. IDEA specifies that your child’s IEP team must consist of a special education teacher, general education teacher, school district representative or administrator who is knowledgeable about general and special education, and an individual who can explain the results of the comprehensive evaluation, such as a school psychologist. Other professionals, such as a speech-language pathologist, may be present.

Be Prepared

At least one week before the meeting, Harris recommends parents request, in writing, a copy of the assessment, the evaluation report, and any other documentation the IEP team will discuss.

Make sure you have time to review the IEP document and write down any questions you have. Questions may include what a word or acronym means or why an accommodation that you believe is important is or isn’t listed. While you prepare, Dr. Musgrove recommends turning to your most valuable resource for information: your child. Ask for his or her thoughts about how things are going at school. Write down any questions you have and your vision for your child’s education. Gather supporting documents, such as medical notes or previous schoolwork that you wish to review with the team. Create a fillable sheet to write down agreed-upon goals and supportive services during the meeting. If you wish, invite a friend, family member, or another individual who knows y our child to attend for support.

WHAT PARENTS NEED TO KNOW

Beware of jargon — if you don’t understand a term, ask the team to explain it in clear, concise language. Ensure the language in the IEP is unambiguous about the services to be provided, when they will begin and end, and your child’s goals.

“If parents don’t agree with the IEP, they need to say, ‘I no longer want this meeting to continue, I need to contact an educational advocate,’ and obtain an educational advocate to walk through next steps,” Harris advises.

Once parents and the school district agree to the IEP and services begin, communication is crucial. If you notice your child struggling in a certain area, notify his or her teacher right away instead of waiting until the next annual IEP review meeting.

IDEA requires an IEP review meeting at least once a year, but parents can request one at any time.

“Parents may find it helpful to have an IEP review meeting at the beginning and end of each academic year, as well as a midyear meeting to get a sense of their child’ s progress,” says Julie
Youssef, D.O., M.P.H., Developmental-Behavioral Pediatrician and Clinical Assistant Professor of Developmental and Behavioral Pediatrics at Stanford University School of Medicine.

“Starting at age 16, the child must be invited,” Dr. Musgrove says.
“I encourage parents to have their children attend IEP meetings much earlier — not necessarily the entire meeting — so they can learn to self-advocate.”

Most importantly, whether you’re new to the IEP process or have experience with it, trust your knowledge and judgment as a parent.

“A lot of parents may feel like they’re ill prepared [to navigate the IEP process], but they’re actually more prepared in ways that they may not immediately recognize,” Harris says. “No one knows their child better than parents … so they need to understand they’re pivotal players and hold information no one else will have. That’s the biggest mistake that parents make — not believing in themselves.”


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Finding Her Voice

January 24th, 2020 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 4 of 4

Multi-Talented Performer Meg Ohsada Has Learned That, When It Comes To Communication, Words Aren’t Always Necessary.


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

MEG OHSADA, a Canada native who happens to have Down syndrome, has become an international superstar known for her competitive figure skating and dancing with four Special Olympic medals and counting. She is also known for her extraordinary, widely-collected artwork. At just 25-years-old, Meg also has her artwork displayed and purchased at prestigious galleries around the world. And believe it or not, that’s not all she does! She recently took up rhythmic gymnastics and modeling, too.

Born to Japanese parents who immigrated to Canada, Meg is one of three girls. Although Meg is nonverbal, she communicates her powerful and inspirational messages through her passion for sports, fashion, advocacy, and art.

Her accomplishments serve as an inspiration to the Down syndrome community and she recently began modeling to continue her advocacy work for people who are differently-abled.

“Meg is the family’s backbone,” says her mother, Noriko Ohsada. “Her gentle presence has given us love, strength, inspiration, and hope for the future.

A DEDICATED FAMILY

Noriko, who immigrated to Toronto, Canada, from Japan with her husband, Kaoru Ohsada, did not know what Down syndrome was until Meg was born in 1993. In fact, Noriko recalls, she had to learn the word “chromosome” in English when a doctor told her that additional testing was necessary.

Noriko remembers being very scared when she researched the condition. She read that Meg would not live long and would need to be institutionalized. Thankfully, the medically inaccurate information did not deter her and Kaoru’s belief in Meg’s abilities.

From the time Meg was born, her parents noticed she was a happy baby and an energetic, passionate child. Shortly after Meg was born, Noriko and Kaoru had two more daughters: Sari, now 23, and Juli, now 22.

Meg always had difficulties with verbal communication and continued to struggle to talk after undergoing speech therapy.

In 1997, searching for a fresh start and better access to medical care, the family moved from Toronto to Canmore, a small town in Alberta, Canada at the edge of the Canadian Rockies. That’s where Meg’s remarkable artistic abilities began to take shape.

“As my children are close in their age, I always introduced the same activities to all of them,” Noriko says. “Figure skating was the perfect activity for the girls to be athletic and beautiful at the same time. I truly enjoyed watching them.”

“We noticed Meg could remember movements with music very quickly,” Noriko says. “That’s when we realized that performing arts was a way of self-expression.”

LOUDER THAN WORDS

Meg took to figure skating like a natural, impressing her family and her instructors by skating through intricate choreography, remembering every step. At age 8, she joined a local figure skating club and eventually began attending a weekly Special Olympics figure skating program in Calgary, about an hour from Canmore. Meg gets on the ice four to six days a week, for an hour or so a day. Plus, she does yoga, gymnastics, and other physical activities to stay in shape.

She has excelled as a figure skating competitor, earning two gold medals at the 2019 Special Olympics Alberta Winter Games and two silver medals at the 2013 Special Olympics World Games in Pyeongchang, South Korea. In 2015, she competed in the Canada Games, which features athletes of all abilities. She continues to inspire other skaters with and without Down syndrome at her home rink in Canmore.

Meg began her dance career at age 14 and attends four dance classes per week. She is also a rhythmic gymnast, a sport she took up at age 18.

She competed in dance in both the 2015 and 2017 Special Olympics World Games, placing fourth at the 2017 Winter Games in Austria. In 2017, she also performed a ballet solo with Ignite Dance at Banff Centre in Banff, Canada, near her hometown of Canmore.

A MULT-TALENTED ARTIST

Movement isn’t Meg’s only form of expression. At age 21, Meg began a career as an artist, taking classes at the Indefinite Arts Centre in Calgary.

Her artwork has appeared in galleries in Hong Kong, Seoul, and South Korea, and she was the featured artist at a local gallery, artsPlace, in Canmore.

Meg’s favorite piece is an abstract self-portrait of herself dancing.

“She expresses herself through art, and she loves public exhibition opportunities where she can get that recognition from other people,” Noriko says.

Last year, Meg took up modeling as a way to showcase the beauty and talent of people who are differently-abled. “I believe Sari and Juli learned many wonderful lessons from Meg, including her enthusiasm, optimism, and compassion toward others,” Noriko states.

Meg encourages everyone to work hard and find their own voice. Through her multi-faceted art forms, she shares an important message: “Do what you love, and great things can happen.”


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Changing the World One Stage at a Time

January 24th, 2020 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 4 of 4

When 16-Year-Old Courtney Gaines Has Her Eyes on the Prize, There’s No Stopping Her. Her Latest Endeavor? Rocking the Runway at Global’s Fashion Show with Model & Actress Mikaela Hoover


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

An actress, singer, dancer, and model, 16-year-old Courtney Gaines is no stranger to the spotlight. She is an active member of her community, an Ambassador for a women’s non-profit, and most recently, an entrepreneur. She is determined to show the world that she can do whatever she sets her mind to. What better next stop than to model at the largest fundraiser for Down syndrome in the world?

“The more people see her, the more people love her,” says Courtney’s mother, DeAnna Gaines. Courtney is engaged with many local groups Oklahoma including the Greater Love Missionary Baptist Church, Shining Starz Special Needs Cheer Squad, Down Syndrome Association of Central Oklahoma, and the Air Force JROTC. “Seeing how Courtney’s energy radiates onto everyone around her, we looked for other opportunities for her to shine.”

When DeAnna and Courtney found the Global Down Syndrome Foundation (Global) online they were impressed by the organization’s government work and intrigued by Global’s fashion show. Courtney’s passion for performance and advocacy for inclusion seemed to make her the perfect fit.

“I love to help others and listen to them,” Courtney says. “I want to do good things for others in everything I do.” She is an Ambassador for GirlTrek, the largest national public health non-profit supporting African-American women and girls in the U.S., with a special strategy to connect with women with special needs. Truly a jack of all trades, Courtney also recently started plans for her own business, an online clothing store called CloZet 21c which would raise funds for non-profits.

Courtney’s vibrant personality, loving nature, and happy smile were evident in her audition and she became the first person in Oklahoma to be selected to model in Global’s marquee annual fundraiser, the Be Beautiful Be Yourself Fashion Show. Courtney rocked the runway with Mikaela Hoover, a model, actress, and Instagram influencer who is beautiful inside and out.

Mikaela learned about Global when working on a film in Colombia with her colleague, John C. McGinley, who is a Global board member and international spokesperson. Growing up, Mikaela was very close with her cousin Bobby, who had Down syndrome, and was eager to get more involved in philanthropic work. McGinley told her about Global’s work and Mikaela reached out right away to get involved.

SHINING STARS

Courtney was thrilled to work with a fellow model and actress. “It was so much fun modeling with her! We took selfies and photos backstage too,” Courtney recalls. “She is a great model, she’s so pretty, cool, and very nice.”

As natural performers, Mikaela and Courtney have a lot in common. Mikaela began dancing at the age of 2, and by the time she started school, she was starring in her school’s plays. Mikaela started her acting career in 2006 and is best known for her roles in superhero films including the 2014 box office hit Guardians of the Galaxy and the 2010 superhero dark comedy Super starring Rainn Wilson, Ellen Page, Liv Tyler, Kevin Bacon, and Nathan Fillion. Courtney loves to bring her talents of singing, dancing, and acting to the stage. She was recently in the stage production of Mary Poppins Jr. with Kaleidoscope.

“Courtney was so excited to be on that runway. She knew exactly what she wanted to do and the poses she wanted to strike, and no one was going to stop her,” says Mikaela, who was Courtney’s celebrity escort. “Courtney has so much ambition and carries herself with such grace and independence.”

Both first-timers at Global’s Be Beautiful Be Yourself Fashion Show, Courtney and Mikaela were soaking in every moment. “All of the models had such beautiful energy around them, each one was beaming and shining so bright. It was such an honor to be back there with them,” Mikaela says.

Courtney’s favorite part of the night was blowing her mom a kiss when she was at the top of the stage. “Nothing beats seeing my Courtney up there on stage, dressed to the nines, in the company of Mikaela
and of course our heroes like Jamie Foxx and Quincy Jones,” says DeAnna.

Global’s Be Beautiful Be Yourself Fashion Show raises critical awareness and funds for Down syndrome. This year’s event raised an incredible $2.5 million for Down syndrome research and medical care.

“Global is changing that the narrative surrounding Down syndrome through advocacy and education,” says Mikaela. “Their beauty simply shines from within, and that is definitely something that we need to see more of, not just in the media, but in our world today.”

“All of the models had such beautiful energy around them,” said Mikaela Hoover. “That is definitely something we need to see more of.”


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