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.

The SSA began the Compassionate Allowance program to speed up the process for families in immediate need. Under Compassionate Allowance processing, approval for disability benefits can happen in as little as 10 days.

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.

Applications for Social Security Disability benefits for a child must be done in person at your local Social Security office. Make sure that you bring medical evidence to your appointment as well as documentation of your household income and finances such as pay stubs and bank statements. You should receive a decision within two weeks.

While it is not common, your child’s application could be denied. If this happens, you have 60 days to appeal the SSA’s decision. If your child’s diagnosis is considered a Compassionate Allowance condition, your child’s appeal will be given priority.

Clinical trials carry with them hope for ultimately leading to meaningful treatments or even cures. They are crucial to better understanding and treating rare diseases. Clinical trial participants receive specific interventions according to a research plan or protocol. The physicians and researchers working on the trial will explain the potential risks involved and work to determine the safety and efficacy of the intervention by measuring health-related biomedical or behavioral outcomes in the participants.

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.

Anticipatory Grief: The time I had to prepare for her death provided an invaluable cushion to catch my fall
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

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 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.

It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand
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

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.