Clinic team member
Multidisciplinary clinic teams at MDA/ALS Centers often include social workers as part of their vital services.
Sheilah Blansit, a licensed clinical social worker (L.C.S.W.) at the MDA/ALS Center at Texas Neurology in Dallas, works with local MDA ALS Health Care Services Coordinator Carolyn Minnerly to get newly diagnosed individuals into the center’s ALS clinic quickly to address immediate concerns.
“What ALS clinics do best is get patients and families together who would otherwise never cross paths,” said Blansit, who’s been a social worker since 1988. “They get to know and care about each other, and a bond develops that is indescribable. I think it’s that bond that helps more than anything else.”
Starting at the time of diagnosis, social workers follow people with ALS throughout the course of the disease, assessing needs and making recommendations at clinic visits, over the phone and on home visits.
Working in conjunction with physicians, nutritionists, counselors, and occupational, physical and speech therapists, social workers are tuned into the whole person, said Dave Burkett, an L.C.S.W. with the University of Kansas Medical Center MDA/ALS Center in Kansas City.
Resource and case management
Social workers have many resources to offer those affected by ALS.
“I like to think we’re experts in the community services that are available to individuals, how to direct people in obtaining those services, and some of the specific problems in accessing services,” said Burkett, who has almost 30 years of experience as a social worker.
Social workers make people aware of what’s available to help them better function at home and meet their future needs. They explain and help people with creating advance directives and applying for Social Security Disability Insurance, Medicare and Medicaid benefits.
Hospice social workers, who work in homes, hospitals or hospice facilities, deal with end-of-life issues, answering questions about hospice and helping with the transition to a hospice.
John Hickman and his wife, Edna, attend a clinic at the MDA/ALS Center at Methodist Hospital Neurological Institute in Houston, where they see Rebecca Axline, an L.C.S.W. on the clinic team. The Hickmans, of New Carney, Texas, have nothing but good things to say about their social worker.
“She has so much knowledge — she can help us with insurance, home health and hospice,” said Hickman, 70, who received a diagnosis of ALS in 2005. “If we ever have to go to hospice, she knows all about that. She has been a terrific outgoing person, and she volunteers all that information.”
John, who has weakness in his legs, arms and shoulders, uses a power wheelchair. His speech also is affected.
Edna said that Axline is the first expert she would call if she ever needed anything for her husband.
“When John was in the hospital in April to get a feeding tube, she would come by the hospital to visit with him and be sure that we had everything we needed,” said Edna. “She also helped with finding a home health agency that would come out until I got adjusted to feeding him with the feeding tube.”
Comfort and support
Burkett, who specializes in mental health, offers solid support to individuals with ALS and their families who are struggling to cope with the psychological aspects of having a life-threatening disease and the many changes and losses due to disease progression.
As part of his mental health role, Burkett helps people manage their emotional concerns, using depression scales to determine if they have clinical depression and should see a psychiatrist for medication.
He also eases transitional concerns related to a new diagnosis of ALS. People come to clinic frustrated with the physical and emotional changes going on in their lives, such as no longer being able to work, or needing help getting dressed, or trying to cope with the loss of independence.
“Our role is to help them with that transition so their personal needs are met and we can begin the process of care planning for their future needs,” said Burkett.
Social workers with an L.C.S.W. designation also sometimes provide private counseling outside of the clinic setting. These private sessions are covered by Medicare and some insurance providers.
Many social workers also serve as MDA Support Group facilitators.
Once a month, the Hickmans attend the MDA/ALS caregiver support group, where their social worker, Axline, is a facilitator. Hickman’s wife, Edna, says that Axline has been an emotional resource.
“She’s a tremendous help with knowing what the caregivers need,” Edna said. “And she encourages us to get the help we need and to take time for ourselves.”