The Story of the BD SUMHAC Access Toolkit
Authored by: The BD SUMHAC Team
When a North Carolina woman’s son needed access to a behavioral health facility in 2020, he was denied – despite posing a significant risk to himself and his family. The 10-year-old boy had already been diagnosed with ADHD and a mood disorder, but his mother, Georgia, was informed that it was his hemophilia that precluded him from receiving the treatment he desperately needed.
Witnessing this profound injustice, Gillian Schultz, the director of programs for the Bleeding Disorders Foundation of North Carolina, decided to take action. Her goal was to help not only this boy but also other children and adults facing similar inequities.
Gillian joined BD SUMHAC’s Core Team and began collaborating with hemophilia treatment center (HTC) providers from other states who had successfully secured access for their patients. With these insights, she spearheaded the development of an Access Toolkit for people with bleeding disorders (BDs) and their families.
The comprehensive toolkit offers step-by-step instructions on how to gain admission to mental health or substance use disorder treatment facilities, making it easier for individuals with BDs to receive necessary behavioral health treatment.
“It’s a difficult time when you’re already in crisis, which is why you’d be needing inpatient treatment,” Gillian said. “...Having everything consolidated in one place makes giving the information to the medical providers at the inpatient facilities that much easier.”
The Access Toolkit is designed to empower people with BDs and their families to secure the treatment they need. Made freely available to the public by BD SUMHAC at Access Toolkit — Bleeding Disorders Substance Use & Mental Health Access Coalition (bdsumhac.org), the toolkit includes essential information on: 1) Crisis Resources, 2) Talking with a Provider about Treatment Options, 3) Preparing for a Referral to Inpatient/Residential Treatment, 4) Discussing Bleeding Disorders with an Inpatient/Residential Facility, and 5) Responding to Mental Health and Substance Use Disorder Facility Denials.
One particularly insightful tip advises individuals to direct the treatment facility’s attention to the mental health or substance use disorder at hand, rather than the bleeding disorder. While the bleeding disorders community often emphasizes the serious consequences if BD needs are not met, the toolkit suggests a different strategy: individuals should underscore the details of their mental health or substance use disorder and simply mention that their BD is stable and well-managed, referring the facility to their bleeding disorder treatment team for more information if necessary.
This approach and the other information in the toolkit have already proven effective. For instance, one boy faced discharge from a behavioral health facility when the facility discovered his BD. Gillian shared the toolkit with the boy’s mother, who then took the resources and discussed the accommodations with the facility. As a result, “They agreed to use those accommodations and allowed her to go in once every couple of days to provide his [hemophilia] infusion for him,” Gillian said.
The Access Toolkit is a crucial resource in the fight for equitable access to behavioral health treatment for individuals with BD. Across the nation, people are successfully using the toolkit to advocate for necessary treatment, marking significant progress for the bleeding disorders community. As awareness of the toolkit spreads, people with BDs and the individuals who support them are becoming better equipped to advocate for essential behavioral health care.
Gillian and the BD SUMHAC team believe the Access Toolkit will continue to unlock doors for individuals seeking access to a substance use disorder or mental health treatment facility, preventing others from experiencing the same denial of services that Georgia’s son did in 2020.
To read Georgia’s full story and learn more about the impact of the Access Toolkit, visit Georgia's Story — Bleeding Disorders Substance Use & Mental Health Access Coalition (bdsumhac.org).
The Access Toolkit was made possible by the generous support of the Global Genes Mental Health Impact Grant.