Additional Resources for Families

Support Tools

Glossary of Terms

Informed Consent Questions

Taking Time For Self Care

B Brave is proud to partner with Courageous Parents Network, an educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Its library of videos, podcasts, printable guides, Guided Pathways, and blog features wisdom from families and pediatric care providers to help parents be the best parents they can be.

Apply for a Medicaid Waiver

Children affected by progressive neurological disorders are eligible for Medicaid. Typically, Medicaid requires a waiting period, but because of the acute progression of the disease, children are eligible for a Medicaid Waiver that will allow coverage to start immediately.

To learn how to apply in your state, call toll-free (877) 267-2323 or visit here

Social Security Disability Benefits for Affected Children

Neurodegenerative disorder symptoms worsen over time. As the disease progresses, children need more support. Parents of affected children will likely miss work time, and when paired with the expenses of specialty medical care, it can cause significant financial and emotional distress.
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
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.

Applying for Social Security Disability Benefits
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.
Appealing a Denial of Benefits
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
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.

Literature

B Brave recommends the following books, essays and blog posts.

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Writings from Parents Who Have Lost a Child
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

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.

Support B Brave

Help create and sustain support systems through a donation to B Brave Foundation. Your financial support allows us to truly support children and families facing incurable neurological disorders.