“Ask a Social Worker” is a regular column featuring questions from the community and answers from members of NBDF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
Dear Jackie,
I am a 45-year-old man with severe hemophilia A and have struggled with substance use my whole life. I started using opioids to help control the pain of my joint bleeds. Recently, I was in the hospital undergoing a detox and the unit social worker tried to refer me to an inpatient substance use treatment program. But no program would accept me due to my bleeding disorder and need for weekly prophylaxis factor infusions. What can I do?
I want to commend you for taking the first step toward your recovery. It can feel overwhelming at times, although there are people to help and support you.
In 2022, a group of leaders in the bleeding disorders community started a coalition called the Bleeding Disorders Substance Use & Mental Health Access Coalition (BD SUMHAC), in response to a national survey showing that people with bleeding disorders were often denied access to residential/inpatient substance use and/or mental health treatment programs. It’s an issue that’s become particularly problematic for adolescents in the bleeding disorders community.
While BD SUMHAC is not a mental health or substance use disorder treatment organization and does not offer behavioral health treatment or recommendations, it does support providers in getting people with bleeding disorders the access they need.
Through the work of BD SUMHAC, strides have been made both locally and nationally. Here’s what you and your bleeding disorders treatment team can do to help increase your access to mental health services.
Consider outpatient care. While the nature and severity of the person’s behavioral health condition will determine how much and what kind of care they need, we’ve found that people with bleeding disorders have an easier time accessing substance use or mental health treatment in an outpatient setting. This can include an intensive outpatient program, partial hospitalization, medication management, or psychotherapy.
An intensive outpatient program or a partial hospitalization are the most rigorous outpatient programs where you attend individual or group therapy along with medication management for at least nine to 20 hours per week while living in your home environment. Other outpatient treatments, such as therapy or medication management, can take place in an office, hospital, or clinical setting. Treatment is tailored to an individual’s needs.
Reach out for advocacy help. If you and your provider determine that an inpatient or residential program is the most appropriate setting for treatment, ask your hemophilia treatment center (HTC) or bleeding disorder provider to advocate on your behalf during the referral process.
The way in which you and your provider talk about your bleeding disorder with the facility can increase the likelihood of success. BD SUMHAC has designed toolkits for providers and for people with bleeding disorders on how to facilitate a successful referral and respond to a denial. This information can be found at bdsumhac.org.
Finally, do not give up. There are many people available to help support you in your recovery.
— Jackie Bottacari, LCSW
Bottacari is a social worker at the Yale Center for Bleeding and Clotting Disorders in New Haven, Connecticut, and is a member of the Social Work Working Group.