Welcome to
BEYOND DOWN SYNDROME
Home of
THE ESSENTIAL GUIDE
for FAMILIES with
DOWN SYNDROME
Plans and Actions for Independence at Every Stage of Life
Video & Podcast Offerings
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Latest Guest Podcast on Independence:
Independence can be scary and overwhelming, especially for those in the Down syndrome and I/DD community.
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Our Independence Checkup gauges how you are progressing and provides essential guidance to keep moving forward.
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After you complete this form, you will receive your score and essential information to advance your independence journey.
RESOURCES PAGE
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This page features references and resources to accompany The Essential Guide for Families with Down Syndrome.
Each item is intended to save time and money as your family seeks to navigate the many facets of independence.
Click on the Chapter to Find the Resources ___
KEY
The Essential Guide Chapter
Topic
Resource: Company (Contact)
Website
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1
Success in Special Needs Divorce
Mary Ann Hughes, Special Needs Certified Divorce Coach
www.specialfamilytransitions.com
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3
Self-Advocate business
Art with Heart (Amanda)
http://www.facebook.com/amandasartwithheartshop
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4
Social Relationships
Mad Hatter Wellness (Katie Thune)
4
Social Activities
GiGi’s Playhouse
4
National Down syndrome resource
National Down Syndrome Society
4
National Down syndrome resource
National Down Syndrome Congress
4
National I/DD resource
The Arc
4
National I/DD resource
Easterseals
4
Find a local Down syndrome association
National Down Syndrome Society directory
https://ndss.org/resources/local-support
4
Friendship/ Mentoring
Best Buddies Program
4
Introversion resource
Beyond Introversion (Steve Friedman)
5
Mental health/ counseling services and resources
Rose Reif
5
Communications & Workplace Disabilities Issues
For All Abilities (Betsy Furler)
6
Independent Living Community
Marbridge Foundation (Becca McPherson)
7
Down Syndrome Clinic Dallas
Adult Down Syndrome Clinic Questcare (Tara Goodwin, D.O.)
https://questcaremedicalclinic.com
7
Medical Care Guidelines for Adults with Down Syndrome
Global Down Syndrome Foundation’s Medical Care Guidelines for Adults with Down Syndrome
www.globaldownsyndrome.org/medical-care-guidelines-for-adults/
7
Down Syndrome Research
LuMind IDSC Foundation
7
Depression
Depression & Down Syndrome
https://www.communityinclusion.org/static/depression_DS_F2-28e8b15ba4573f5e0d95633db38bb06f.pdf
7
Mental Health Counseling for teens and adults with Down Syndrome
No Limits Counseling, PLLC
http://www.nolimitscounseling.org/
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7
Mental Health Resource
The Diagnostic and Statistical Manual of Mental Disorders
https://www.amazon.com/Diagnostic-Manual-Intellectual-Disability-Diagnosis/dp/1572561319
7
Mental Health Resource
The Diagnostic Manual – Intellectual Disabilities 2
https://www.amazon.com/Diagnostic-Manual-Intellectual-Disability-Diagnosis/dp/1572561319
7
Alzheimer’s Disease
Alzheimer’s Disease &* Down Syndrome: A Practical Guidebook for Caregivers
https://ndss.org/resources/alzheimers
7
Dementia Screening
National Task Group’s Early Detection and Screening for Dementia (NTG-EDSD)
https://www.the-ntg.org/ntg-edsd
7
Down Syndrome Clinics
NDSC
https://www.ndsccenter.org/programs-resources/health-care/down-syndrome-clinics/
7
Specs4us
Frames to fit people with Down syndrome
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7
TruFit Adaptive Fitness
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7
Shoe Insoles for people with Down syndrome
J1 insoles
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8
Financial Advisor for Special Needs
Solutions for Special Needs Families (Barbara Bush)
www.solutionsforspecialneedsfamilies.com
8
Financial Advisor for Special Needs
Life Planning for Families of Special Needs (TJ Kroehle)
www.forfamiliesofspecialneeds.com
8
Health Insurance Premium Payment by State
HIPP
Google “HIPP” for your state
8
Social Security information
Social Security Administration
8
Social Security information on Retirement, Survivorship, and Disability Insurance
SSA – RSDI
8
Social Security information on Disability Insurance
SSA-SSDI
https://www.ssa.gov/benefits/disability/
8
RetireGuide
Medicare Eligibility and Enrollment for Disabled People
https://www.retireguide.com/medicare/
https://www.retireguide.com/medicare/eligibility-and-enrollment/disabilities/
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8
Medicaid Social Services/Waiver Program Information
SSI/Medicaid by State
http://medicaidwaiver.org/state/vermont.html
8
ABLE Account description and details
ABLE Account
8
ABLE to Work Act
Affecting annual contriubutions
https://www.ablenrc.org/wp-content/uploads/2021/01/ABLEToWorkActFactsheet.pdf
8
SNAP Directory
USDA Food & Nutrition Services
https://www.fns.usda.gov/snap/state-directory
9
Model Day Program
Friends of Down Syndrome (Karen Evans)
9
Model Inclusive College Program
ClemsonLIFE (Dr. Joe Ryan)
https://www.clemson.edu/education/programs/programs/culife/
9
Inclusive College Program Directory
Ivywise.com
9
Think College Projects
Inclusive higher education for students with intellectual disability
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10
Vocational Rehabilitation information
US Department of Education Vocational Rehabilitation
https://rsa.ed.gov/about/programs/vocational-rehabilitation-state-grants
10
Disability Employment Policy
US Department of Labor Office of Disability Employment Policy (ODEP)
https://www.dol.gov/agencies/odep
10
Job Assistance
State’s Workforce Commissions Directory
https://www.dol.gov/agencies/eta/wotc/contact/state-workforce-agencies
10
Self-Advocate business
Fionnathan Productions
10
Self-Advocate businesses
NDSC Advocate businesses
https://www.ndsccenter.org/support-get-involved/shop-ndsc/self-advocate-marketplace/
10
Self-Advocate businesses
NDSS Advocate businesses
https://ndss.org/donate/shop-ndss
11
Navigating a Dual Diagnosis Down Syndrome and Autism Spectrum Disorder
Global Down Syndrome
https://www.globaldownsyndrome.org/navigating-dual-diagnosis-syndrome-autism/
11
Medical Questions and Community
Down Syndrome Diagnosis Network
https://www.dsdiagnosisnetwork.org/
12
Housing & Community Options
Together for Choice
https://www.togetherforchoice.org/housing-directory
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12
Housing & Community Options
A Place in the World
https://www.autismhousingnetwork.org/apitw-report/
12
Housing Consultancy
Autism Housing Network (Desiree Kameka Galloway)
14
Housing Directory& Guide
Autism Housing Network (Desiree Kameka Galloway)
<<<Please email me to submit additional resources>>>​