Resources by Topic
Welcome Families & Caregivers
We’ve searched far and wide and compiled resources and links that you may find helpful. Below are links to resources regarding health, safety, therapies, grief, creating a secure future, other important area agencies, and much more.
Aging & Health
- A Healthy Future Conference: Regression and Catatonia by Dr. Judith Miles
- Alzheimer's Disease in People with Down Syndrome - National Institute on Aging
- Caregiver's Guide to Down Syndrome and Alzheimer's Disease - NDSS
- Decline in Skills and Regression in Adolescents and Adults with Down Syndrome - Webinar
- DSAGSL Alzheimer's, Dementia, and Regression Support Group
- Down Syndrome and Alzheimer's Disease - Alzheimer's Association
- Down Syndrome and Alzheimer’s Disease – NDSS
- Down Syndrome and Alzheimer’s Disease – Dolan Memory Care
- GLOBAL Presentation: Regression in Down Syndrome
- National Task Group- Early Detection Screening for Dementia (NTG-EDSD)
Alzheimer's Disease, Dementia & Regression
- A Healthy Future Conference: Regression and Catatonia by Dr. Judith Miles
- Alzheimer's Disease in People with Down Syndrome - National Institute on Aging
- Caregiver's Guide to Down Syndrome and Alzheimer's Disease - NDSS
- Decline in Skills and Regression in Adolescents and Adults with Down Syndrome - Webinar
- DSAGSL Alzheimer's, Dementia, and Regression Support Group
- Down Syndrome and Alzheimer's Disease - Alzheimer's Association
- Down Syndrome and Alzheimer’s Disease – NDSS
- Down Syndrome and Alzheimer’s Disease – Dolan Memory Care
- GLOBAL Presentation: Regression in Down Syndrome
- National Task Group- Early Detection Screening for Dementia (NTG-EDSD)
Basic Needs, Utilities, and Rent Assistance
Behavior
COVID-19
- Missouri Covid-19 Vaccine Registration & Events
- National Down Syndrome Congress (NDSC) Covid-19 Resource Library
- CDC Toolkit for People with Disabilities
- Global Down Syndrome Foundation- COVID 19 & Down syndrome
- U.S. Department of Health & Human Services Bulletin: Civil Rights, HIPAA, and COVID-19
- United Way 211- Important Phone Numbers to Know for MO & IL
- CDC’s COVID-19 Webpage
- Department of Health and Senior Services
- Directory of Local Public Health Agencies (LPHAs)and Services
- Missouri Department of Mental Health- COVID-19
- Missouri Department of Mental Health- Division of Developmental Disabilities
- Missouri Department of Elementary and Secondary Education
- Centers for Medicare and Medicaid Services (CMS)
- 5 Things To Know About Coronavirus And People With Disabilities
- What do Older Adults and People with Disabilities Need to Know?
Disaster Preparedness
- The Red Cross- Preparing for Disaster for People with Disabilities and Other Special Needs
- Information for People with Developmental Disabilities
- Helping Those with Developmental Disabilities Prepare
- Making A Plan
- Emergency Tear Sheets
- The Access Board
- DHHS Administration on Aging
- National Council on Disability
- National Organization on Disability
- Prepare.org
- American Association for People with Disabilities
- American Foundation for the Blind
- National Association of the Deaf
- Easterseals
Dual Diagnosis
Education
- The Learning Program of St. Louis
- NDSC Resources for Preparing for Online Learning
- Tips on developing homeschool routines
- Transition from First Steps to Early Childhood Special Education
- Access to Education
- All About Me Booklet
- Daily Communication Log
- How to Choose a School District
- Home- to-School Communication
- NDSC Education Resources
- Parents Guide to Special Education in Missouri
- Parents Rights Under IDEA Webinar
- Recording IEP Sessions in MO- Video
- Recording IEP Sessions in MO- Letter Template
- Using Mini Schedules and Visual Checklists
- Missouri Parents Act (MPACT)
- Illinois Early Learning Project
- Family Matters Parent Training And Information Center in IL
Financial Planning
- Achieving a Better Life Experience (ABLE) Act
- ABLE Act Presentation by Cathy Brown, Paraquad
- ABLE National Resource Center
- 10 Financial Steps for Caregivers
- Financial Resources for MO Children with DD
- Future Planning for a Child with Special Needs- MetLife
- 10 Tips for Future Planning - MetLife
- Midwest Special Needs Trust
- Personal Finance Guide for People with Disabilities
- Social Security Benefits
- Understanding SSI Resource Limits
- Understanding Medicaid Resource Limits
Grief
Guardianship
Health Information & Guidelines
Inclusion
- Disability is Natural by Kathie Snow
- Inclusion The Natural State by Kathie Snow
- Does Inclusion Benefit Children without Disabilities?
- U.S. DHHS and Dept of Ed Policy on Inclusion
- Inclusive Education Guidelines – NDSS
- Inclusion Matters by Special School District
- The Paraprofessional’s Role in Inclusion – Disability Solutions
- Summary on the Evidence on Inclusive Education
- Complete Inclusion Packet
Medical Centers
St. Luke’s Albert Pujols Wellness Center for Adults with Down Syndrome is located at Mr. and Mrs. Theodore P. Desioge, Jr. Outpatient Center in Chesterfield Missouri. This center is designed specifically for individuals with Down Syndrome who are 17 years of age or older.
The center offers:
- nutrition coaching
- exercise therapy
- social services
- classes and programs for individuals and, caregivers
For more information please contact 314-576-2300 or ADS.WellnessCenter@stlukes-stl.com.
The Down Syndrome Center is located at St. Louis Children’s Hospital and has seen hundreds of patients with Down syndrome since it opened in 2005.
The Down Syndrome Center at St. Louis Children’s Hospital is a comprehensive and multidisciplinary clinic focusing on the medical and developmental needs of children with Down syndrome. Children are evaluated from birth to 21 years of age, including prenatally diagnosed cases. When your child visits the Down Syndrome Center, he/she will be evaluated by Dr. Dorothy Grange or the CPNP. They will focus on medical and developmental issues, and screening recommendations will be completed.
The Center also collaborates with other specialties as needed: Cardiology, Ophthalmology, ENT, Audiology, Therapy Services, Dietitian and Social Services. The Center also works with additional specialties such as Endocrine, GI, Neurology and Orthopedic Surgery. Our goal is to optimize the quality of life for your child by offering comprehensive individualized care in one setting.
The Center will make it simpler for you by:
- Arranging appointments at one location with the specialists your child needs to see.
- Arranging your appointments in the most efficient manner so you and your child gain the maximum benefit.
- Using a collaborative approach because our team of experienced caregivers is in one location.
The Down Syndrome Center is located at St. Louis Children’s Hospital, 2nd Floor, Suite 2C.
For more information please contact 800.678.5437 or 314.454.6093 or downsyndromecenter@kids.wustl.edu.
Mental Health Resources
- Adult Down Syndrome Center - Resource Library
- Bridges Community Support Services
- Mental Health America of Eastern Missouri
- Mental Health Issues & Down Syndrome - NDSS
- Missouri Department of Mental Health
- The NADD
- Q&A about St. Louis Arc's Respite Program
- Tips for Finding & Interviewing a Respite Provider
Puberty and Sexuality
Recreation Resources
Therapy- Physical Therapy in the Early Years
- Physical Therapy Exercise Video 1
- Physical Therapy Exercise Video 2
- Physical Therapy Exercise Video 3
- Global Down Syndrome Foundation Webinar on Physical Therapy
- Global Down Syndrome Foundation Webinar Power Point
- National Down Syndrome Congress Resources- Physical Therapy
- Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals
- Easter Seals PT for Parents to do with Babies with Down syndrome
- The Goal and Opportunity of Physical Therapy for Children with Down Syndrome by Patricia C. Winders, PT
Therapy- Speech Therapy in the Early Years
- Early Communication Development- Webinar
- Multimodal Approach to Teaching Children with Down syndrome Speech & Language Skills- Webinar
- Understanding and Expression of Language in Down syndrome
- How to Teach k and g sounds – Fun with Lollipops Video
- Early Communication Development and Down Syndrome – Boston Children’s Hospital
- 9 Activities to Help Children with Down syndrome develop speech
- Simple DIY Infant Activities to Promote Development (free e-book)
- Top 10 Ways to Use Bubbles for Language Development
- First Word to Phrases
- Speech and Language Resources
- Top 5 Speech Therapy tips for Children with Down syndrome
- Speech and Language Development for Infants with Down syndrome - birth to 5 years
- Resource Guide to Oral Motor Skill Difficulties in Children with Down syndrome
- Signing Times
- See and Learn Speech
- Video Sign Language Dictionary
Toliet Training
Transition
- Missouri Department of Education Transition Programs
- Missouri Inter-agency Transition Team
- Missouri Parents Act (MPACT) Advocacy Center
- Transition Coalition
- Vocational Rehabilitation Transition Services
Transportation
Affiliates and Partnered Organizations
Resource Guides
Private Facebook Groups
We have several private groups on Facebook you can join to connect with other families, and share resources, strategies, and stories with one another.
-The Sharing Our Strategies Group is for parents and caregivers of individuals with Down syndrome of all ages, to ask questions and share information and referrals with each other.
-The Family Resource Network Group is for families and caregivers of adults with Down syndrome 32 and older. We will celebrate our successes, ask questions, share strategies, and simply connect with others on this journey of aging with Down syndrome.
-The DSAGSL Ready2Work Group was created to help provide employment opportunities and support for people with Down syndrome. Join us as we share information and opportunities to support people with Down syndrome looking for a job!
You can also follow DSAGSL on Facebook and Instagram for updates on events, programs, services, resources, and news that benefit the lives of individuals with Down syndrome, and we also have a YouTube channel with tons of great videos!
