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Resources

NC DOWN SYNDROME ORGANIZATIONS

Costal Buds of Southeastern NC

Down Syndrome Association of Charlotte

Down Syndrome Network of Greater Greensboro

Down Syndrome Network of Onslow & Carteret Counties

Gigi’s Playhouse Raleigh

Piedmont Down Syndrome Support Network

Triangle Down Syndrome Network 

Western North Carolina Down Syndrome Alliance

 

NC DOWN SYNDROME CLINICS

Charlotte Down Syndrome Center

The Clinical Genetics Program at Levine Children’s Hospital is the only such program in the region. We can perform chromosomal, metabolic and DNA analysis for diagnosis for genetic diseases and provide a comprehensive management plan for conditions,

Duke Down Syndrome Clinic 

The Duke Comprehensive Down Syndrome Program is a multidisciplinary referral clinic for the management of Down syndrome in infants, toddlers, children, and adolescents in Durham/Raleigh and North Carolina.

University of North Carolina at Chapel Hill Clinic

UNC Children’s Dept. of Genetic Disorders provides diagnosis, evaluation, and referrals for relevant health care providers in infants, toddlers, children, and adolescents in the Triangle and across the state.

 

NATIONAL DOWN SYNDROME ORGANIZATIONS

Down Syndrome Affiliates in Action

Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. After consecutive years of explosive growth, the conference has extended its reach internationally and is now a 501c3 nonprofit trade association continuing its mission: to support and advance the growth and service capabilities of the local and regional Down syndrome organizations we serve, to be the conduit of value-driven training, programs, best practices and support for our members.

Down Syndrome Diagnosis Network

The Down Syndrome Diagnosis Network connects, supports and provides accurate information to families with a Down syndrome diagnosis across the country.

Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.

National Down Syndrome Congress

It is the mission of the National Down Syndrome Congress to be the national advocacy organization for Down syndrome and to provide leadership in all areas of concern related to persons with Down syndrome. In that capacity, NDSC will function as a major source of support and empowerment to persons with Down syndrome and their families.

National Down Syndrome Society

The National Down Syndrome Society supports young researchers seeking the causes of, and answers to, many of the medical, genetic, behavioral and learning problems associated with Down syndrome; sponsors internationally renowned scientific symposia; advocates on behalf of families and individuals affected by this condition; provides information and referral services through its toll-free number; and develops educational materials, many of which are distributed free of charge.

NC DOWN SYNDROME SPECIFIC ORGANIZATIONS

Costal Buds of Southeastern NC

Down Syndrome Association of Charlotte

Down Syndrome Network of Greater Greensboro

Down Syndrome Network of Onslow & Carteret Counties

Gigi’s Playhouse Raleigh

Piedmont Down Syndrome Support Network

Triangle Down Syndrome Network 

Western North Carolina Down Syndrome Alliance

 

EDUCATION

ECAC Exceptional Children’s Assistant Center (Birth – 26 years of age)

ECAC is a statewide, private non-profit parent organization committed to improving the lives and education of all children with an emphasis on children with disabilities and special healthcare needs. Services are provided free of charge to North Carolina families.
http://www.ecac-parentcenter.org/

DPI Special Education as the Exceptional Children Division (School aged children 3-21 yrs. old)

Exceptional Children Division works to ensure students with disabilities develop intellectually, physically, emotionally, and vocationally through an appropriate individualized education program in the least restrictive environment across the state.
http://ec.ncpublicschools.gov/

Wrights Law (Birth – 26 years of age)

Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities across the United States.
http://www.wrightslaw.com/

Project Enlightenment (Birth – kindergarten age)

Project Enlightenment is an early childhood education and intervention program of the Wake County Public School System located in Raleigh, North Carolina. Services are available to Wake County teachers and parents of young children birth through kindergarten age.
http://www.projectenlightenment.wcpss.net/

Think College (Adults)

Think College is a national organization dedicated to developing, expanding, and improving inclusive higher education options for people with an intellectual disability. With a commitment to equity and excellence, Think College supports evidence-based and student centered research and practices by generating and sharing knowledge, guiding institutional change, informing public policy, and engaging with students, professionals and families.
http://ThinkCollege.net

 

GENERAL

Sibling Support Project (Adult siblings)

The Sibling Support Project is dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

 

PUBLIC POLICY AND ADVOCACY

Disability Rights North Carolina

Disability Rights supports people with disabilities and those whose decisions affect people with disabilities, focusing on practical solutions through systemic change and the protection the legal rights of people with disabilities through individual and systems advocacy.
http://www.disabilityrightsnc.org/

National Down Syndrome Society Public Policy

The NDSS National Advocacy & Public Policy Center supports the mission of NDSS to be the leading human rights organization for all individuals with Down syndrome by advocating for federal, state and local policies that positively impact people with Down syndrome across the country.

The NC Council on Developmental Disabilities

The Council oversees both the provisions of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). The NCCDD works on behalf of over 185,000 people with I/DD living in NC to help communities become more inclusive of people with I/DD and their families.
http://www.nccddc.org/

North Carolina General Assembly

Laws of North Carolina are made by the North Carolina General Assembly which is made of two houses; the Senate, which has 50 members; and the House of Representatives, which consists of 120 members. Each legislator represents either a Senatorial District or a House District.

The Arc of NC – Public Policy

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

 

RECREATION

North Carolina Special Olympics (2-7 yrs old, Special Olympians 8 yrs. old to adulthood)

Special Olympics provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities to develop physical fitness, demonstrate courage and experience the joy of participation across the state.
http://sonc.net/

Behavior Overview: 

Managing Behavior – National Down Syndrome Society

Behavior-Guide-for-Down-Syndrome

 

Dual Diagnosis (DS-ASD)  

Parents of children with Down syndrome and autistic spectrum disorder (DS-ASD) are especially in need of tips to manage inappropriate behavior because there is so little information available about this dual diagnosis for parents or professionals. As parents, you become comfortable accommodating your child’s learning style based on information about Down syndrome and your own experiences. Then the latter diagnosis, autistic spectrum disorder, is superimposed on the first. At this point many parents are overwhelmed. They feel as though all hope for modification is lost. However, if you approach your child’s behavioral difficulties that are often associated with autistic spectrum from a systematic, behavioral perspective, you will feel renewed hope for not only behavioral management, but also for skill development. Learn more

 

Potty Training

Potty training can be a challenge with any child.  Every parent hopes for a smooth process. Each child is different, but there are certain signs to look for in your child to determine their readiness to start using the potty!

Toilet Training and Down syndrome

Toilet Training Program for Individuals with Special Needs – Adapted from the Foxx and Azrin Program

Wiping Sequence Visual

 

Running

They ran in the past and continue to run in spite of strategies created to stop the running. Sound familiar? People who run create stress for everyone involved; often their safety is at risk or their running creates further problems. No matter what the cause, you want the running to stop. The focus of most interventions is to stop the “runner,” a poor use of your time and energy. People will run faster, further and harder when you try to stop them without responding to the underlying needs triggering the running in the first place. How to stop Runners

 

Wandering Behavior

Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which can result in potential harm or injury. This might include running off from adults at school or in the community, leaving the classroom without permission, or leaving the house when the family is not looking. This behavior is considered common and short-lived in toddlers, but it may persist or re-emerge in children and adults with autism.  Learn more

Statewide Resource for Special Education

NC’s Parent Training and Information Center (PTI)
ECAC has been providing services to North Carolina families of children with disabilities, their teachers and other professionals since 1983. Our Parent Educators and PTI staff are here to help you navigate the special education maze and provide you with the information and tools you need to be a informed and active participant in your child’s education!   ECAC’s Parent Training and Information Center (PTI) is funded through the US Department of Education, Office of Special Education Programs.

 

Inclusion

When referring to educational settings, the term “inclusion” can be described as an approach to teaching where students with special needs are educated in traditional classroom settings.  One of the main ideas behind inclusion is the realization of each individual’s differences along with the acceptance of those differences by all involved.  Research has revealed that when inclusion is carried out appropriately, all students benefit no matter what their cognitive, academic, emotional, or physical functioning levels are.  Inclusion promotes acceptance of all people.

LEARN MORE HERE

It is also important to educate the classmates of an individual with Down syndrome.  The following video entitled “Just Like You” is intended for classmates.  It focuses on how there are more similarities rather than differences when it comes to a child with Down syndrome.

LEARN MORE HERE

This website is dedicated to promoting inclusive schooling and exploring positive ways of supporting students with autism and other disabilities.  Most of her work involves collaborating with schools to create environments, lessons, and experiences that are inclusive, respectful, and accessible for all learners.

www.paulakluth.com

 

Individualized Education Plan (IEP)

An individualized education plan (IEP) is a legal document written for a public school student who has special needs.  The plan is personalized specifically to address the individual’s needs.  The team of people who write the plan may include any of the following individuals:  Student, Parent/Guardian, Director of Special Education Services, Principal, Assistant Principal, School Psychologist, School Counselor, Speech and Language Pathologist, Physical Therapist, Occupational Therapist, General Education Teacher, Special Education Teacher, other professionals and/or friends of the family (ie. Advocate, Outpatient Therapist, Aunt, etc.).  The plan includes goals and special services necessary for the student to successfully learn and perform in the educational system.  Progress on the IEP is monitored and can be updated as necessary, specific to the student.  The law enforcing IEP’s can sometimes be confusing.

LEARN MORE HERE

 

Transition Planning

In the educational world, the term “transition services” refers to the planning that occurs to move the child from school to post-graduation activities.  The intention of transition services is to consider the individual student’s needs and desires and plan for a successful transition into “adulthood”.  Discussions around transition planning should begin to occur in late elementary years and increase into middle school and high school.  Some of the most important discussions, preparation, and goal setting should occur at the start of high school to ensure an appropriate plan is in place to assist in the transition from high school to adulthood (which could include additional academics, community employment, socialization opportunities, living quarters, etc.).

LEARN MORE HERE

 

College and Postsecondary Options

In recent years, many colleges and universities across the country have been creating opportunities for students with disabilities.  Although laws are different from the k-12 public school system to colleges/universities, individuals with disabilities are still protected.  In the k-12 setting, schools follow the law based on the Individuals with Disabilities Education Act of 2004.  Post-secondary options, however, follow the law outlined by the Office for Civil Rights.

To LEARN MORE about post-secondary options, click on the following link and then go to the “Find a College” tab and follow the prompts to find the appropriate college/university for you:  http://www.thinkcollege.net/

To LEARN MORE about student’s rights under the Office of Civil Rights, click the following link for a “Frequently Asked Questions” page:  http://www2.ed.gov/about/offices/list/ocr/transition.html

2016 College Resources for Students with Disabilities

 

Reading Tips and Tricks

Many people with Down syndrome struggle with reading, comprehension, fluency, and phonics.  Research has shown that a mixture of both “Errorless Learning” and “Sight Word/Whole Word Reading” oftentimes results in the best outcomes in learning to read.

LEARN MORE HERE

 

Math Tips and Tricks

Math can be a big struggle for some people with Down syndrome.  Research has shown that certain math programs and ways of teaching produce better outcomes.  The following link contains teaching methods, activities, and modules to assist in teaching math to individuals with learning struggles.  It is divided by age (3-5 years, 5-11 years, and 11-16 years).

LEARN MORE HERE

 

Tips for Educators who Teach Children with Down Syndrome

As you prepare to teach your student/s with Down syndrome, we encourage you to focus on your student’s abilities and not their disabilities. Below are links to information regarding education and children with Down syndrome. Like all of us, individuals with Down syndrome learn and develop at their own rate and in their own way. People with Down syndrome have varied goals for their futures and individual expectations of their roles in the family, school and community. To learn more, visit these resources for educators:

http://www.ndss.org/Resources/Education/Education–Down-Syndrome/
https://dsawm.org/wp-content/uploads/2014/05/2014-Educator-Manual.pdf https://www.kcdsg.org/files/content/DSACT%20Educator%20Packet.pdf

Presuming Competence: http://www.ndss.org/Global/udl_ndss_webinair.pdf 
Universal Design: http://www.ndss.org/Global/udl_ndss_webinair.pdf 
Inclusion: http://inclusiveschools.org/inclusion-resources/

 

Tips for Behavior

As children with Down syndrome mature, just as a children without a disability, they “test the waters” to figure out how they can get what they want.  Sometimes that “testi ng” turns into undesired behaviors which can be difficult to change.  Dr. David Stein, Boston Children’s Neuropsychologist, presented at the Massachusetts  Down Syndrome Congress in 2012 focusing on behavior and Down syndrome.  To watch the presentation, click here.

#DSWORKS

#DSWORKS® is a new employment initiative of the National Down Syndrome Society.  The goal of the program is to encourage corporations and businesses to invest in hiring people with Down syndrome; and increase the number of opportunities for individuals with Down syndrome to work in meaningful and competitive employment settings.

LEARN MORE HERE

 

NC Division of Vocational Rehabilitation Services

The Division of Vocational Rehabilitation Services provides counseling, training, education, transportation, job placement, assistive technology and other support services to people with disabilities.

LEARN MORE HERE

This page is currently under construction!

Health Guidelines for Children with Down Syndrome

In July of 2011, the American Academy of Pediatrics (AAP) Committee on Genetics published revised guidelines to assist physicians in providing care to individuals with Down syndrome (Ds). Previous guidelines were published in 1999. Eight years later, the most welcomed and updated guidelines provide clinicians assistance in the key areas including prenatal testing and counseling; feeding in the infant with Down syndrome; airway, cardiac , neurologic and gastrointestinal assessment; growth in children with focus on BMI or weight for length (no longer using Ds growth curves); evaluation for atlantoaxial instability (AAI), clarification about screening for thyroid disorders and celiac screening; and vision and hearing screening.

Aging and Down Syndrome

Adults with Down syndrome, along with their families and caregivers, need accurate information and education about what to anticipate as a part of growing older, so they can set the stage for successful aging. The purpose of this booklet is to help with this process. It is intended to be used by various learners: families, professionals, direct caregivers or anyone concerned with the general welfare of someone with Down syndrome.

DS-Connect

DS-Connect is a powerful resource where people with Down syndrome and their families can:

• Connect with researchers and health care providers.
• Express interest in participating in certain clinical studies on Down Syndrome, including studies of new medications and other treatments.
• Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with Down Syndrome across their lifespans.

 

NC DOWN SYNDROME CLINICS

Charlotte Down Syndrome Center 

The Clinical Genetics Program at Levine Children’s Hospital is the only such program in the region. We can perform chromosomal, metabolic and DNA analysis for diagnosis for genetic diseases and provide a comprehensive management plan for conditions,

Duke Down Syndrome Clinic 

The Duke Comprehensive Down Syndrome Program is a multidisciplinary referral clinic for the management of Down syndrome in infants, toddlers, children, and adolescents in Durham/Raleigh and North Carolina.

University of North Carolina at Chapel Hill Clinic 

UNC Children’s Dept. of Genetic Disorders provides diagnosis, evaluation, and referrals for relevant health care providers in infants, toddlers, children, and adolescents in the Triangle and across the state.

This page is currently under construction.

Here are a few websites where you can learn more

https://www2.ncdhhs.gov/ncinnovations/

Alliance Behavioral Healthcare

Alliance is the managed care organization for public behavioral healthcare services for the citizens of Durham, Wake, Cumberland and Johnston counties in North Carolina and offer crisis and assessment centers and case management services.
https://www.alliancebhc.org/

Cardinal Innovations Healthcare

Cardinal Innovations Healthcare is a specialty health plan engaged in the unique managed care model in North Carolina, which relies on strong community partnerships with providers and stakeholders to provide person-centered care.
https://www.cardinalinnovations.org/

Trillium Health Resources

Trillium Health Resources manages mental health, substance use and intellectual/developmental disability services in a 24-county area in eastern North Carolina. We connect individuals and families to the help they need when they need it and are responsible for managing state and federally funded services for people who receive Medicaid, are uninsured or cannot afford services.
http://www.trilliumhealthresources.org

The Healthy Bodies Toolkit

This appendix has storyboards and visuals that you can use in implementing the methods outlined in the toolkit. This file is not included in the printed manual.You may choose to print the entire appendix, or you may want to print a particular page or set of pictures to laminate for everyday use. You may share these pictures with others who work with or care for your child.

View Toolkit

How To Discuss Puberty with Your Child who has Special Needs

It’s not easy to talk to any child about how our bodies change during puberty.  But how can it be explained to a child with special needs who may or may not understand?

When our son was preparing to transition to middle school, my husband and I realized that he needed more detailed information than the elementary school’s basic health curriculum and family living video.  We were also concerned that he may receive some incorrect information from his peers if we did not teach him the facts first. So we came up with our own step-by-step approach to discussing the physical and emotional changes ahead:

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