A Special Mission
Patients with developmental disabilities
benefit especially from
consistent, specialized health-care. Serving these individuals
has helped this physician find a fulfilling career.
consistent, specialized health-care. Serving these individuals
has helped this physician find a fulfilling career.
Alexander Graham Bell once said,
“The achievement of one goal should be the starting point
of another.”
When I was 10 years
old, I set a goal to become a doctor. Later, as a summer camp
counselor, I realized I enjoyed working with children and set
another goal, to teach my four- and five-year-old
water-resistant campers to swim.
In my fourth year of
medical school, I set the most critical goal for
myself—to ensure that my practice of medicine would not
only be gratifying, but also make a long-term difference.
During a rotation, I became inspired by a pediatric
neurologist. This was the defining moment for me: I knew
I could have an early and significant impact on the lives of my
patients. I knew that I could achieve my goal.
Years later, when I
became a pediatric neurologist, I saw a child who suffered from
infantile spasms which, if treated promptly, can be overcome.
If the condition is left untreated, the child may be affected
by developmental delays or disabilities such as autism, mental
retardation, cerebral palsy, or learning disabilities. I can
make a significant difference in the lives of children with
this condition and their parents, not only with medical
diagnosis and treatment, but with emotional reassurance, as
well.
Today, I have achieved
all of these early goals. Not only am I confident that my
campers of years ago are still swimming successfully, I have a
thriving private practice in pediatric neurology. Heeding
Bell’s advice, I have taken my aspirations further by
working with patients of all ages with neurological impairments
and developmental disabilities as the medical director of
Premier HealthCare, a medical practice designed to meet the
needs of these individuals and their families.
A critical need
In following patients from infancy through
adulthood, I am fortunate to be involved in many aspects of
their lives. I am often looked upon as a social worker,
advising the family on such things as guardianship, residential
options, post-educational services, and family support
services. For an individual with developmental disabilities,
life can pose some difficult challenges. I feel gratified that
I can partner with my patients and their families to help them
find the information they need to make the best decisions for
their wellbeing.
Once I began working with
children and, later, adults with developmental disabilities, it
didn’t take me long to recognize the glaring gap in the
provision of health-care services for this population.
Traditionally, people with developmental disabilities have been
unable to find accessible, quality health-care services that
meet their specific needs. According to the President’s Committee for People with
Intellectual Disabilities,
individuals with mental retardation and other developmental
disabilities are likely to have unmet health-care needs because
they are faced with unique challenges in understanding and
maintaining their health.
Providers are often
ill prepared to treat individuals with developmental
disabilities because these patients may not be capable of
describing their medical histories, and the medical record
system is not equipped to provide such information. These
patients often lack a primary care physician, and are seen in
emergency rooms or medical clinics in hospital settings by
whichever resident is on call. As a result, there is a lack of
continuity of care for these patients, and many conditions or
illnesses go undiagnosed.
The 2000 Special
Olympics’ Report on “The Health Status and Needs of Individuals
with Mental Retardation”
cites that only 17.7 percent of individuals with mental
retardation had seen the same physician or been to the same
clinic twice. Because individuals with mental retardation and
other developmental disabilities often have difficulty adapting
to unfamiliar surroundings and thrive in structured routines,
consistent and familiar providers are particularly important to
their treatment.
These individuals
often have a greater chance of being overweight due to lack of
mobility, certain medications, and haphazard diet regimens.
People with developmental disabilities also can have cardiac
problems or co-morbid conditions that relate to their
disabilities. Quality, specialized health-care services are
critical. It is important for health practitioners to be able
to coordinate and integrate services for these patients and,
most of all, for a doctor to have the compassion and the focus
to work with them.
Enduring rewards
I’ve seen the medical practice at
Premier HealthCare grow from three small treatment rooms and
portable dental equipment to four full-service health centers
with 200 dedicated medical professionals, nurses, and support
staff. Last year, we had approximately 70,000 patient visits,
demonstrating the critical need for these specialized services
and the support and understanding we give to our patients and
their families. We see the benefit of patience and consistency
for both our patients and our practice.
We spend the extra
time that enables our patients to be comfortable in the
dentist’s chair, in contrast to providers who repeatedly
send these individuals to the hospital to receive anesthesia
for a routine cleaning. Our type of practice prevents
duplicated efforts, increases efficiency of diagnosis, and
provides the patients and their families with peace of mind and
a pleasant experience.
Experience has shown me
that the three basic things people need from their health-care
provider is ease of access, appreciation, and time and
sensitivity to their needs. As a doctor, can meet these basic
needs, and to my mind, nothing is more critical and rewarding
than bringing this type of quality health care, support, and
dedication to a population that has long been neglected. In my
profession, I am fulfilled, challenged, and thrilled that I am
still helping children and adults achieve their own goals and
milestones like learning to swim.
g
David Kaufman, MD is an assistant clinical
professor in the Department of Pediatrics and Neurology at
Mount Sinai Medical Center in New York. He is also an attending
physician, pediatric neurology at Lenox Hill Hospital in New
York, and the medical director at Premier HealthCare, a member
of the YAI/National Institute for People with Disabilities
Network. He may be reached at david.kaufman@yai.org
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