Additional Resources for Families
Support Tools

Glossary of Terms


Informed Consent Questions

Taking Time For Self Care

Apply for a Medicaid Waiver
To learn how to apply in your state, call toll-free (877) 267-2323 or visit here
Social Security Disability Benefits for Affected Children
Social Security Disability benefits may be available to help cover everything from day-to-day expenses to childcare or medical bills. Here are the programs available:
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Disability Benefit Programs
The Social Security Administration operates the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
- SSI benefits do not have any work history or tax-related requirements, and are usually the best choice for children. To qualify for SSI, applicants must fall within certain financial limits. The SSA evaluates children under the age of 18 based on a portion of their parents’ income. Learn more about SSI financial limits.
- SSDI benefits are for disabled workers and their eligible family members. To qualify for SSDI, applicants must have earned income and paid Social Security taxes consistently throughout their careers. The only way a child can qualify for SSDI is if he or she has an eligible parent. Learn more about auxiliary benefits.
Compassionate Allowance Program and Medical Criteria
Work closely with a healthcare provider to prepare any disability application. They will help you collect the necessary medical records and can even provide a written statement that outlines your child’s condition and limitations.
Applying for Social Security Disability Benefits
Appealing a Denial of Benefits
Clinical Trials
Should you wish to have your child participate in a trial, be sure to discuss potential options with physicians. You can find actively recruiting studies here.
Literature
B Brave recommends the following books, essays and blog posts.
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Writings from Parents Who Have Lost a Child
Blog post from Carla Steckman on Courageous Parents Network
The Still Point of the Turning World
Book by Emily Rapp
Notes from a Dragon Mom
Rapp’s essay about raising her son, Ronan, who had Tay-Sachs disease
An Exact Replica of a Figment of my Imagination
Book by Elizabeth McCracken
Holding Silvan: A Brief Life
Book by Monica Wesolowska
A Life beyond Reason
Book by Chris Gabbard
When Bad Things Happen to Good People
Book by Harold S. Kushner
Angel Unaware: A Touching Story of Love and Loss
Book by Dale Evans Rogers
Writings that Help Build Resilience
Everything Happens for a Reason
Book by Kate Bowler
What to Say When You Meet the Angel of Death at a Party
Essay by Bowler from the New York Times
Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief
Book by Joanne Cacciatore, Ph.D.
Option B: Facing Adversity, Building Resilience, and Finding Joy
Book by Sheryl Sandberg & Adam Grant
Man’s Search for Meaning
Book by Viktor E. Frankl
Brené Brown’s Library of Resources
Brené Brown is a professor, lecturer, author, and podcast host who has spent her entire career studying the concepts of courage, vulnerability, shame and empathy. Her knowledge benefits affected families, friends and extended families and healthcare professionals.
Brené Brown is in no way affiliated with BBrave Foundation. We simply feel like this is a valuable resource worth sharing.
Writings on Grief
Book by Megan Devine
Healing a Parent’s Grieving Heart: 100 Practical Ideas After Your Child Dies
Book by Alan D Wolfelt
Healing a Child’s Grieving Heart: 100 Practical Ideas for Families, Friends and Caregivers
Book by Alan D Wolfelt
Healing a Friend’s Grieving Heart: 100 Practical Ideas for Helping Someone You Love Through Loss
Book by Alan D Wolfelt
A Grief Observed
Book by C.S. Lewis
A Grace Disguised: How the Soul Grows through Loss
Book by Jerry L. Sittser
Lament for a Son
Book by Nicholas Wolterstorff
Writings for Healthcare Professionals
Being Mortal: Medicine and What Matters in the End
Book by Atul Gawande
When Breath Becomes Air
Book by Paul Kalanithi
How We Die: Reflections on Life’s Final Chapter
Book by Sherwin B. Nuland
That Good Night: Life and Medicine in the Eleventh Hour
Book by Sunita Pure
Companioning the Bereaved: A Soulful Guide for Counselors & Caregivers
Book by Alan D Wolfelt
Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief
Book by Joanne Cacciatore, Ph.D.