For individuals and families living with neuromuscular diseases, having access to the right support is paramount to living life to the fullest. Groundbreaking research, clinical trials and care from the best physicians are critical. But so is everyday help, and that’s where MDA Care Center social workers come in.
Social workers can help individuals address and overcome many personal and societal barriers to maintain independence and thrive, while also helping whole families understand how one person’s neuromuscular disease can affect everyone.
Most individuals and families who attend an MDA Care Center will have a multidisciplinary care team that includes a social worker — one like Sarah Stoney at the MDA Care Center at The Children’s Hospital of Philadelphia. Sarah builds relationships with families that allow her to help people navigate specific issues and find the right type of support.
“As a social worker, I network with community organizations and hospital resources to see how we might best meet a families’ need,” Sarah says. “I work to help families with a variety of issues, including care coordination, overcoming barriers to care, school concerns, insurance issues, transition to adult care, overall coping with diagnosis and disease progression, community resourcing for families, patient advocacy and end-of-life questions and planning.”
How Our Social Workers Help
- Medical social workers in hospitals and clinics generally focus on the practical aspects of coping with illness and disability, such as insurance reimbursement issues, financial problems, equipment and housing needs, transportation, and home care. They’re also trained in counseling techniques. You may also meet with clinical social workers who serve more as counselors, assisting with things such as psychosocial issues raised by disability.
- Social workers will ask questions about your socioeconomic status, culture and education. When your care team is familiar with who you are, your needs and your personal preferences, you can work together to find the solutions that make sense for you.
- Children and adults with neuromuscular conditions may experience multiple invasive procedures and spend time away from their normal environment, which can cause distress and may require ongoing coping methods. Social workers can help develop personal plans to tackle stress in the short and long term.
- Social workers can assist families with life transitions by providing information on young adult programs, employment resources and tips for hiring a personal assistant.
- Social workers can provide resources if you have experienced abuse.
- Social workers can help facilitate timely conversations about advanced directives and the role of palliative care and how it differs from hospice services.
By the end of 2017, every MDA Care Center will employ a social worker, if it doesn’t already, as part of the health care team to enhance individuals’ and families’ overall care plans.
It’s part of our overall mission to be a champion for MDA families from day one.
“I believe the benefits of families coming to MDA Care Centers are extraordinary,” Sarah says. “In one appointment, families can see multiple providers, including people from support staff such as social workers. We are giving families a comprehensive assessment and follow-up that helps support them through their disease journey.”