Texas: When commuity care fails a person with severe DD

The Texas Fort Worth Star-Telegram ran a two-part series by Deanna Boyd investigating the tragic 2013 death of a 39-year-old woman with severe multiple disabilities who was receiving Medicaid-funded Home and Community Based services while being cared for by her sister and father:

• "Failing Marci: A disabled woman’s story of triumph and tragedy", 2/27/15
• "Failing Marci: Investigation raises questions about care and oversight for disabled woman", 3/1/15

Even with her multiple severe disabilities, Marci Garvin lived at home, attended a regular school, and later worked in paid supported employment. Her mother was a proponent of full inclusion and Marci’s story was an inspiration to others that someone with disabilities as severe as hers can live a full life in the community and work at a paying job. How, then, did Marci Garvin end up in the hospital, two days before she died, with “more than 20 major bedsores…covered in urine, feces and bugs..." at almost half her normal weight?

According to the Fort Worth Star-Telegram, “Marci spent her last years under the primary care of an increasingly overwhelmed sister battling her own mental illness while also caring for a special-needs daughter and an ailing mother…” Marci's sister, Tabby Martinjak, admitted to investigators that she was being treated “for...hoarding, as well as other mental illness, including bipolar disorder, manic depression, post-traumatic stress disorder and obsessive-compulsive disorder.”

Also, according the news reports, “The [Texas] Department of Disability and Aging (DADS) contracts with both public and private HCS [Home and Community-Based Services] providers, reimbursing them with Medicaid dollars. As of December, 21,676 clients were receiving HCS services in Texas with more than 72,000 on a waiting or 'interest' list….Marci was enrolled in the program’s foster care option, allowing her to receive services from her HCS provider while living at home. Her mother, and later Martinjak, were paid for being Marci’s primary caregiver, receiving about $3,000 a month in Medicaid funding at the time of the Marci’s death.”

Investigators found a lack of oversight in Marci’s tragic death: 

• " Employees of the two service providers and MHMR knew that Martinjak was a hoarder whose boxes of possessions and clutter reached from floor to ceiling of the family’s southwest Fort Worth home, but they did little to address it despite the fire and safety risk it posed. Martinjak repeatedly avoided home visits and inspections, yet was allowed to continue her paid role as foster care provider for her sister.
• "Dianne Salas, a care coordinator with Southern Concepts at the time of Marci’s death, was required to assess Marci’s home yearly but hadn’t been inside the Garvins’ house since 2010. Still, Salas filled out home assessments in 2011 and 2012, stating that the home was safe for Marci.
• "Marci had not seen her primary care doctor since 2010 despite contrary statements from her sister and had not received a required nursing assessment from her service provider."

Although Home and Community-Based Services are invaluable to families who choose to keep disabled family members at home and engaged in their communities, a lack of oversight, unrealistic demands on caregivers, and neglect can lead to tragic events such as this. The reporter Deanna Boyd,from the Fort Worth Star-Telegram, has done an excellent job of covering this important story.