About the BD SUMHAC Access Toolkit
The BD SUMHAC Access toolkit is designed to empower you and give you the tools to help you or your loved one get access to inpatient/residential mental health and substance use disorder treatment facilities. If you or a loved one has been denied access to treatment because of a bleeding disorder (BD), don’t give up!
People with BD are protected from discrimination under a federal law called the Americans with Disabilities Act and deserve access. After a denial, first, contact your BD treatment team and share the BD SUMHAC toolkit with them. BD SUMHAC is available to support your treatment team as they advocate for your access to treatment. If the BD provider does not feel comfortable or able to advocate on your behalf, please contact the BD SUMHAC advocates at the National Hemophilia Foundation or the Hemophilia Federation of America.
Contents of the BD SUMHAC Access Toolkit
Talking with a provider about the options for addressing your substance use or mental health concerns
Preparing for a referral to inpatient/residential mental health or substance use disorder treatment facilities
Discussing bleeding disorders with a treatment facility
Responding to treatment facility denials
The resources in this toolkit are based on the experiences of providers who treat people with BD and who have referred people with BD to substance use disorder and mental health treatment facilities, but we are learning more every day! Please consider this toolkit a living document that contains the best information we have about this issue today.
Trigger warning: This toolkit contains stories of people with BD who have been denied access to mental health and substance use disorder treatment facilities. 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. The content of these stories may be triggering to some. The stories include discussions of mental health issues, substance use disorders, self-injurious behavior, suicide, and violence.
BD SUMHAC encourages you to take the necessary steps for your emotional safety. If you have thoughts of suicide or self-harm:
Go to the nearest emergency department
Call 911
Call or text the National Suicide & Crisis Lifeline at 988
Text the Crisis Text Line (text HOME to 741741)
Also contact your:
Mental health provider
Primary care physician
HTC or bleeding disorder care team
If you have been denied access, please contact your BD treatment team first and then reach out to the BD SUMHAC advocates at the national bleeding disorder organizations:
Ryan Faden, BD SUMHAC Advocate at National Bleeding Disorders Foundation: (929) 687-3462, rfaden@hemophilia.org.