Stories

There is no shortage of stories about people with disabilities who do not get the care they need, sadly, and who are treated poorly — on every level – by the existing healthcare system.

Some of the experiences of actual members (with fictitious names here) in the three founding organizations are summarized below. Together these stories provide a sense of the range of individuals who most benefit from the DCP model of disability-competent care:

  • Samuel is a 21-year-old male who suffered a gunshot wound when he was in 9th grade, resulting in paraplegia (he does have use of his hands and arms). He also has life-threatening pressure ulcers (“bed sores”), uses both tobacco and marijuana, and has suffered from multiple blood clots in his lungs, so he needs long-term anticoagulation therapy; he has been involved with gangs. Because of multiple hospitalizations and poor self-care at home, Samuel was identified as being in need of more comprehensive outreach services. He lives at home with his 80+ year old grandmother who was his legal guardian until he turned 21.   He was also diagnosed with PTSD, Impulse-Control Disorder, and Oppositional Defiant Disorder. He enrolled in BCMG, and his primary care team arranged for a several month stay at a sub-acute facility to maximize healing of his pressure ulcers; throughout his rehab, the team stayed in close touch with Samuel and provided emotional and medical support, in the hope that he would work with them to get better.  As of two years ago, all of his pressure ulcers have healed, and he has avoided being hospitalized for the past two years as well.  Samuel is an ongoing member of BCMG, and receives primary care from both a nurse practitioner and a doctor.  His BCMG team ordered physical therapy for wheelchair seating to reduce pressure on his skin and to minimize his risk for a recurrence of pressure ulcers.  Samuel also works with a social worker from BCMG to receive support for emotional, family, housing, and financial issues.  He has lived successfully in the community for two years, and continues to do so.
  • Charlize is a 27-year old woman with cerebral palsy, an unusually small head (microcephaly), intellectual disability, seizure disorder, Rett’s disorder (characterized by fits of screaming and inconsolable crying, and loss of function in the hands as well as loss of speech, panic-attacks, and behavior that resembles autism), incontinence, and spastic quadriparesis (weakness in all four limbs);  She is non-verbal and communicates via physical gestures and vocalizations; She has a feeding tube inserted into her abdomen, and eats a pureed diet, as she is prone to choking.   Charlize lived for a long time in a nursing home, but when she became a patient of a DCP pioneering organization, with the right care and support, she was able to get out of the nursing home and into an independent living situation in a group home.  She has maintained independent living in a group home with primary care via the DCP’s multidisciplinary team, has stayed out of the hospital for three years, and appears to be doing well.
  • John is a 27-year-old male who is quadriplegic (due to an injury that severed his spinal cord when he was 24). He also has chronic pain, an inability to control his bladder and bowels, spasticity, and has lost more than 30% of his weight.  John suffers from malnutrition and pressure ulcers (also known as “bedsores”).  He lived in an acute rehab facility for two years, until he enrolled in a disability-competent plan.  He moved back home with his partner and two-year-old daughter; his home is on the third floor with no elevator.  John uses a motorized wheelchair to ambulate, so he is unable to leave his home without being carried down the stairs.  John’s care team set up both physical therapy and occupational therapy at his home, along with home management of the equipment John needs (including his motorized wheelchair); the team also manages the coordination of care from specialists, including urology and pain management.  John accesses care from a pain management clinic that specializes in chronic pain; his care team works closely together to oversee his care; he still lives independently in the community.

The stories of Samuel, Charlize, and John provide just three brief descriptions of some of the issues that people with disabilities face.  The Disability Practice Institute is dedicated to defining, developing, and refining a seamless model of disability-competent care that can be replicated in local communities so that people like Samuel, Charlize, and John can enjoy lives of independence, health, and fulfillment.