Accessing Health Care - Part 1
Today's guest blogger is Christopher Sabine. He has an MA in social work and has optic nerve hypoplasia. I have been reading his posts to our septo-optic dysplasia listserv since the day I subscribed almost four years ago. Over time, his descriptions of his personal experience in overcoming some of the sensory and behavioral characteristics of ONH have been helpful to me in understanding what things might be like for John - not to mention inspiring in general. He has a knowledge of educational and health bureaucracy issues that have helped a large number of families. Another thing I like about his writing is that he's not reluctant to provide his opinion, which often includes elements I hadn't considered, and he clearly identifies it as such. His consulting service is ONH Consulting.
My name is Christopher Sabine, and I am an adult with Optic Nerve Hypoplasia. I am 35 years old and live with my parents. I have a Master's degree in Social Work and currently operate ONH Consulting, the only national firm dedicated to providing service coordination and other support services to families impacted by Optic Nerve Hypoplasia and Septo Optic Dysplasia. I am significantly visually impaired and use a cane and other blindness accommodations.
Recently The Boston Globe published an article concerning the reluctance of physicians in the adult health care arena to treat people with disabilities. Based on a newly released report from a state chapter of a prominent public interest group representing people with developmental disabilities, the article focused on the continued reliance of these patients on pediatric specialists well into adulthood. The results of this report come despite a long line of government and private initiatives to bridge the sometimes yawning gaps between child and adult-oriented health care in the United States.
The gap between pediatric and adult health care for many with disabilities has been well recognized as far back as 1989, when then Surgeon General C. Everett Koop held the first national conference on health care and transition. Around that time, health care practitioners began realizing that increasing numbers of patients were living beyond their diagnoses. Medical treatment and technologies made it possible for many children with significant disabilities to live into adulthood. Special education curricula and community supports arising from the deinstitutionalization movement that began in the 1960's afforded these children access to employment opportunities, housing and leisure activities never conceived of before. The need for a coordinated approach to transition children with significant congenital health conditions to adult health care providers became all too apparent.
In 1996, The U.S. Department of Health and Human Services launched an initiative called Healthy and Ready to Work. A key goal of this initiative was to transition children with chronic health conditions and disabilities from pediatrics to the adult health care system. I can share this information with some expertise, because I worked from 1998 to 2001 as a service coordinator for one such program, where I worked with youth, families, schools and service providers to connect a caseload of primarily urban youth with various disabilities to employment, adult health care and recreational opportunities in the community. My work connected me with a variety of professionals in the arena of health care transition at the state and national level. I always had the sense that this experience would prove vital in my own life at some point in the future.
In 2001, the grant funding for our program expired, and my job for Healthy and Ready to Work ended. Two years later--after running into some difficulties at two other jobs--I began researching my own condition. What I found was that optic nerve hypoplasia was increasingly viewed as a neurological condition- not just another cause of visual impairment, as my parents and I were led to believe. I found that sensory integration and behavioral characteristics, which had dogged me all my life, are fairly common in children with ONH, and in fact, very little was known about ONH among professionals and families alike.
One thing I did find was that pituitary dysfunction is very prevalent among children and some adults with ONH, and I needed to begin seeing an endocrinologist. I've experienced bouts of persistent, low-grade fatigue all my life, and this can be related to hypoglycemia due to low growth hormone levels.
However, most of the endocrinologists working with patients with ONH work exclusively with children. There is almost no knowledge of ONH among endocrinologists who work with adults, and it is even uncommon to see a case of secondary or central hypopituitarism in an adult endocrinology practice.
I first contacted my local children's hospital- one of the best pediatric teaching hospitals in the country with an esteemed endocrinology program and active patients with ONH. Not surprisingly, I was told that no one could see me as an adult; the admissions coordinator also indicated that none of their endocrinologists had an adult practice. This is despite the fact that our children's hospital is university-affiliated and regularly shares resources with a large regional adult teaching hospital.
My primary care physician was no help. He could only give me a general phone number for admissions at the adult teaching hospital which, it turned out, primarily dealt with Medicaid patients. I could find only three endocrinologists in our entire metropolitan area that even served adults- none had heard of ONH.
Frustrated, I called a contact at our state's bureau for children with special health care needs (CSHCN). CSHCN is a federally mandated program that provides durable medical equipment and physicians' services to children with chronic health conditions. CSHCN programs are typically administered by county health districts and sometimes municipal health departments and are geared for children requiring specialized medical treatments or interventions. Some children with ONH have qualified for these services based on Pituitary deficiencies or other medical complications.
My contact forwarded my inquiry to the director of our CSHCN bureau, who received his medical degree from the same university where I completed my undergraduate work away from home.
The director referred me to one of his colleagues in a joint adult and pediatric practice affiliated with the university. He is the director of the department of endocrinology at the university's school of medicine. He has worked as an endocrinologist for nearly 25 years and has military privileges. While he has not had a patient with ONH, he did have one with central hypopituitarism.
Though I've been fairly satisfied with him as a doctor, barriers still remain. His office is an hour away, and so are all diagnostic labs affiliated with the university where he practices. This means that I can't even go for lab work locally and be sure that the results would be forwarded to his office. This became an issue when my insurance denied me coverage for growth hormone treatments as my levels were borderline.
At this point, my only source of transportation to his office is my mother, who works as a retail store manager and is sometimes called to work as needed due to limited and sometimes unreliable staffing. Even if I could find a local endocrinologist, transportation is still a potential obstacle. For example, though our pediatric and adult teaching hospitals are near public transportation, getting to medical appointments typically involves navigating complex, frequently changing campus environments. Literally learning the way to the doctor's office can mean paying out of pocket for specialized orientation and mobility instruction- from another old professional contact from the Healthy and Ready to Work initiative.