Resources
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Not sure where to find help?
Contact DSAmd: We’re here to help:
info@DSAmd.org / call or text: 410-321-5434
For Families
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National First Call Center
The First Call National Training Center, established in 2011, offers support and training for local and state Down syndrome organizations to design and implement a Parents First Call program in their area.
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Maryland Department of Health- Down Syndrome
Resources from the Office of Children and Youth with Specific Health Care Needs. This includes family checklists, health care providers, and parents, including face sheets and guides.
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The Down Syndrome Diagnosis Network (DSDN)
The Down Syndrome Diagnosis Network (DSDN) was launched on World Down Syndrome Day, March 21, 2014. Today, our focus remains the same — improving the diagnosis experience for parents and providing a framework of support.
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Understanding a Down Syndrome Diagnosis
The material in this publication is intended to provide a general overview of Down syndrome and select, reliable resources.
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Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome 10 Year Anniversary Edition
This book is specifically written for expectant mothers who are preparing for the birth of a baby with Down syndrome. It will answer your pregnancy and birth questions, validate your emotions, provide coping advice, and give you hope for the future.
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Maryland Infants and Toddlers Program
Now you can make a referral to the Maryland Infants and Toddlers Program at your convenience using the Online Referral System. This fully encrypted web-based application will ensure the security of your information while saving you time and increasing efficiency.
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Developmental Disabilities Administration (DDA)
Complete the DDA application as early as possible—even at birth. While services may not be immediately available, you'll receive a case worker, and early application supports access to vital transition services in adulthood.
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American Academy of Pediatrics (AAP) Guidelines
This clinical report is designed to assist the pediatrician in caring for the child, adolescent, and family in whom a diagnosis of Down syndrome has been confirmed by chromosome analysis or suspected by prenatal screening.
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DSC2U- Down Syndrome Clinic to You
Down Syndrome Clinic to You (DSC2U) was created to bring the best of health and wellness information about Down syndrome to caregivers and primary care physicians around the globe.
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Kennedy Krieger- Down Syndrome Clinic and Research Center
The Down Syndrome Clinic and Research Center provides interdisciplinary and comprehensive evaluations and treatment services from birth to adulthood to patients from all over the United States.
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Children's National Down Syndrome Clinic
Children's National Hospital has the only dedicated Down syndrome clinic in the Washington, D.C., metropolitan area. The pediatric specialists provide personalized care for your child’s physical, mental and emotional health needs.
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Parents' Place of Maryland
PPMD helps families obtain education and health care services for their children with disabilities; work to improve education and health care for all children; train and inform parents and professionals on a variety of topics; and connect children with disabilities to community resources that address their needs.
ACTIVISM AND LEGISLATION
The Asian Americans with Disabilities Resource Guide was created to combat ableism within the disabled Asian American community through first-person testimonials, comprehensive peer-reviewed research, and briefs from AADI events.
Disability Rights Maryland endeavors to maximize its resources and empower people with disabilities to the greatest extent possible by providing information, training, and resources that will help people advocate for themselves, or for others who have a disability.
U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA) website, which brings together IDEA information and resources from the Department and our grantees.
Maryland ABLE accounts are a new way to help individuals with disabilities save money and pay for qualified disability-related expenses without jeopardizing state or federal means-tested benefits such as SSI or Medicaid.
MARYLAND DOWN SYNDROME ADVOCACY COALITION - MDAC
The Maryland Down Syndrome Advocacy Coalition (MDAC), founded in 2007 and reenvisioned in 2021, is a collaboration of self-advocates, family members, other allies, and Down syndrome organizations from across the State of Maryland that is committed to ensuring that people with Down syndrome have the opportunity, encouragement, and support required to lead a self-determined life.
Become an informed voter on all things impacting the disability community with MDAC’s 2022 Voter’s Guide.
Click here to view the 2022 MDAC voter guide today:
REV UP stands for “Register, Educate, Vote, Use your Power!” The REV UP network is composed of grassroots coalitions and partner organizations that work to advance the Disability Vote. REV UP’s mission is to foster civic engagement and protect the voting rights of Americans with disabilities.
DSAmd is excited to announce we are a partner for Disability Voting Rights Week!
Can individuals with Down syndrome vote? YES! Your vote matters and your vote is powerful!
Use YOUR power by registering to vote BY CLICKING HERE.
Important note: Individuals with intellectual and developmental disabilities are only ineligible to vote if they are both under guardianship and found by a court to be unable to communicate a desire to vote.
Having trouble with voting?
If you have any issues at the polls/casting your vote - here's a voting hotline to report and troubleshoot:
866-OUR-VOTE (866-687-8683)
LOOKING FOR A DOCTOR RECOMMENDATION?
Check out this DSAmd-curated and crowd-sourced list of physicians recognized as awesome for Doctors’ Day 2022. The list is organized/sorted by location, name and type - check out the tabs on the spreadsheet when you click here: https://bit.ly/dsamdtopdocs
FINANCIAL AND LEGAL RESOURCES
FINANCIAL HELP
Check out this DSAmd-curated list of resources to support families with their financial needs for treatment and care for an individual with Down syndrome. Click here for the list.
LISS (LOW-INTENSITY SUPPORT SERVICES) - $2,000 GRANT FOR MARYLAND RESIDENTS
Everyone who is connected with DSAmd should consider applying for this 1-2 times each year
Click here for an FAQ (Frequently Asked Questions) document that explains the funding opportunity
Maryland ABLE accounts are a new way to help individuals with disabilities save money and pay for qualified disability-related expenses without jeopardizing state or federal means-tested benefits such as SSI or Medicaid.
ATTORNEYS AND HELP WITH TRUSTS, ETC.
Check out this DSAmd-curated list of attorneys and resources to support families with guardianship, trusts, wills/estate needs, etc. Click here for the list of recommended firms and specialists.
Resource for Expectant Families, babies age 0 through age 5
WEEK BY WEEK RESOURCE GUIDE.
Check out our week-by-week resources and suggested information - formatted in a simple PDF that you can print or keep on-hand. Click Here to view the PDF.
EARLY SPEECH AND LANGUAGE EVALUATION ADVOCACY ONE-PAGER AND ATTACHMENTS.
Working with Dr. Libby Kumin, CCC-SLP, we developed a one-pager advocacy sheet for our newest families to use to help them find the language to advocate for early language and feeding evaluation and therapies for loved ones with Down Syndrome. Click Here to view the PDF.
Also, with express permission from Dr. Kumin to DSAmd, we are able to share two attachments: the Pre-speech Recording Form, and the Early Social Interactions form, to help support this advocacy. We recommend completing the assessment forms with your communications practitioner (speech therapist) as a way to discuss the best level of therapy needed for your child.
Need an elopement prevention plan for loved ones who try to run away? We can help.
We know that some families who have loved ones with Down syndrome struggle to keep them safe and in the presence of adults while at home and on vacation.
Here is a list of helpful tips, tricks, suggestions about preventing elopment/running — and a dash of hope from other DSAmd families! — formatted in a 3-page, easy-to-read document.
Cell Phone Ideas/Guidance for Families
We curated family suggestions and insights to help your loved one’s transition to a smart cell phone!
OTHER DOWN SYNDROME-SPECIFIC ORGANIZATIONS
Sibling Resources
Looking for ways to help educate siblings on the topic of Down Syndrome and other special needs? Here are some resources below:
Groups / Resources :
The Sibling Support Project - https://siblingsupport.org/
Sibling Leadership Network - https://siblingleadership.org/
Books, Films, and Articles :
"Fasten Your Seatbelt" by Brian Skotko - A Crash Course on Down Syndrome for Brothers and Sisters
"Views From Our Shoes" by Don Meyer – Assortment of essays from siblings of individuals with special needs
"47 Strings: Tessa's Special Code" by Becky Carey – A book focusing on a big brother learning about his little sister's "special code"; A great option to explain down syndrome to young children! (READ ALOUD VERSION - https://www.youtube.com/watch?v=x5nHMaZGKIE )
Sibling Meet-Ups :
Our organization is entertaining the idea of scheduling a few “meet-ups” for siblings of individuals with Down Syndrome in Maryland. This would be an opportunity for children and teens with siblings with Down Syndrome to interact with one another and connect over similar experiences and topics, and also allow a safe space for them to make new friends. If you are interested, please reach out at director@dsamd.org for more information.