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RESOURCES PAGE

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

Chapter 3

 

 

1

Success in Special Needs Divorce

Mary Ann Hughes, Special Needs Certified Divorce Coach

www.specialfamilytransitions.com

3

Self-Advocate business

Art with Heart (Amanda)

http://www.facebook.com/amandasartwithheartshop

4

Social Relationships

Mad Hatter Wellness (Katie Thune)

www.madhatterwellness.com

 

4

Social Activities

GiGi’s Playhouse

https://gigisplayhouse.org/

 

4

National Down syndrome resource

National Down Syndrome Society

www.ndss.org

 

4

National Down syndrome resource

National Down Syndrome Congress

www.ndscenter.org

 

4

National I/DD resource

The Arc

http://www.thearc.org/

 

4

National I/DD resource

Easterseals

www.easterseals.com

 

4

Find a local Down syndrome association

National Down Syndrome Society directory

https://ndss.org/resources/local-support

 

4

Friendship/ Mentoring

Best Buddies Program

https://www.bestbuddies.org/

 

4

Introversion resource

Beyond Introversion (Steve Friedman)

www.BeyondIntroversion.com

 

5

Mental health/ counseling services and resources

Rose Reif

www.rosereif.com

 

5

Communications & Workplace Disabilities Issues

For All Abilities (Betsy Furler)

https://forallabilities.com/

 

6

Independent Living Community

Marbridge Foundation (Becca McPherson)

www.Marbridge.org

 

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

https://lumindidsc.org

 

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/

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

www.specs4us.com

7

TruFit Adaptive Fitness

www.GetTruFit.com

7

Shoe Insoles for people with Down syndrome

J1 insoles

www.j1insoles.com

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

www.ssa.gov

 

8

Social Security information on Retirement, Survivorship, and Disability Insurance

SSA – RSDI

https://www.ssa.gov/privacy/pia/Retirement%20Survivors%20Disability%20Insurance%20Accounting%20System.updtd%20Sept%2028.htm

 

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/

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

www.ablenow.com

 

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)

www.friendsofdownsyndrome.org

 

9

Model Inclusive College Program

ClemsonLIFE (Dr. Joe Ryan)

https://www.clemson.edu/education/programs/programs/culife/

 

9

Inclusive College Program Directory

Ivywise.com

https://www.ivywise.com/ivywise-knowledgebase/resources/article/colleges-with-programs-for-students-with-special-needs/

 

9

Think College Projects

Inclusive higher education for students with intellectual disability

www.thinkcollege.net

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

www.fionnathan.com

 

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

12

Housing & Community Options

A Place in the World

https://www.autismhousingnetwork.org/apitw-report/

 

12

Housing Consultancy

Autism Housing Network (Desiree Kameka Galloway)

www.autismhousingnetwork.org

 

14

Housing Directory& Guide

Autism Housing Network (Desiree Kameka Galloway)

https://www.autismhousingnetwork.org/apitw-report/

<<<Please email me to submit additional resources>>>

Chapter 1
Chapter 2
Chapter 4
Chapter 5
Chapter 6
Chapter 8
Chapter 7
Chapter 9
Chapter 10
Chapter 11
Chapter 12
Chapter 13
Chapter 14
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