Typically, people with BDs have access to outpatient/community-based mental health (MH) and substance use disorder (SUD) treatment. However, individuals are often denied access to inpatient and residential MH and SUD treatment facilities, sometimes with significant consequences. BD SUMHAC’s focus is on facilitating appropriate access to inpatient and residential MH (psychiatric) facilities as well as residential SUD treatment facilities (American Society of Addiction Medicine (ASAM) level 3). We recognize that some states use the terms “inpatient” and “residential” interchangeably when describing longer, live-in SUD treatment facilities that may not have medical staff or medical oversight. In this toolkit, we will use the term “residential” to describe the ASAM level 3 SUD programs, so as not to confuse them with ASAM level 4 medically-managed, intensive inpatient services. Additionally, this document will frequently use the term “behavioral health.” According to the Centers for Medicare and Medicaid Services (CMS),* “Behavioral health includes the emotions and behaviors that affect your overall well-being. Behavioral health is sometimes called mental health and often includes substance use.” In this document the term behavioral health includes both mental health and substance use. 

In August 2022, BD SUMHAC released the first iteration of its provider toolkit. The toolkit is based on interviews with hemophilia treatment center (HTC) providers (physicians, nurses, and social workers) who were successful in securing inpatient and/or residential placements for their patients with SUD. Since then, BD SUMHAC is pleased to report that the coalition has used these tools to successfully help three individuals from the bleeding disorders (BD) community get access to treatment facilities.

Additionally, BD SUMHAC has been raising awareness within the BD community and continues to hear the stories of those who have been denied access or who have succeeded in securing access. These experiences have informed the work of this updated toolkit. While the original toolkit focused exclusively on securing access to SUD treatment facilities, this version expands the scope to include access to MH treatment facilities. If you would like to read the stories of people with BD who have been denied access to treatment, please visit the Community Voices section of the BD SUMHAC website. Except for Derick, whose family has authorized the use of his name in conjunction with this project, the names of the community members have been changed to protect their privacy.  

According to the National Bleeding Disorders Foundation’s (NBDF) Medical and Scientific Advisory Council (MASAC), hemophilia treatment centers (HTC) should be the primary advocate for people with BD who have been denied access to a MH or SUD treatment facility because of their BD. According to MASAC, “The role of a comprehensive HTC is to provide holistic, individualized patient care, and to support and advocate for persons with bleeding disorders (PwBD) throughout their lifespan. This includes ensuring that the BD and associated treatments are not barriers to a person’s SUD care and that the PwBD can continue to receive the standard of care for their BD while residing in a SUD treatment facility.”                                                            

BD SUMHAC is not a MH or SUD treatment organization. If the coalition is contacted by a person with a BD seeking assistance with overcoming barriers to access residential MH or SUD treatment, BD SUMHAC will refer them to their BD treatment team. BD SUMHAC will follow up with the BD treatment team directly to offer tools, resources, and support. If the BD treatment team does not feel comfortable or is not able to advocate on behalf of their patient with treatment facilities, it is important to communicate this to BD SUMHAC.

The information in this document provides recommendations and resources for BD treatment teams to consider before making referrals, during the referral process, and in the event of a denial. BD SUMHAC hopes these tools help additional BD treatment teams facilitate access for their patients, but also recognizes that there is still more to learn and work to be done. 

If you use this toolkit on behalf of a patient, regardless of the outcome, please contact BD SUMHAC to share your story so that we can improve the tools and others can learn from your experience. Please contact BD SUMHAC to provide your feedback at info@bdsumhac.org.