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Should
Specialized Health Services Exist for People with
Medically/Dentally-complex Mental Retardation/Developmental Disabilities? ----------------------------------------------------------------- Summary: Philip May, M.D. explores the history of services for people with mental retardation. He notes that while service trends have moved away from a "one-size fits all" approach to a more individualized approach which takes into account individual needs, health care services have not followed suit. Using the evolution of the hospital as an analogy, Dr. May suggests the need for "medical specialization" in the fields of developmental medicine and dentistry. Dr. May is a Clinical Associate Professor of Medicine at Robert Woods Johnson School of Medicine, a physician at Hunterdon Developmental Center, and a VOR Board Member. By Philip May, M.D. October 22, 2001 Since
the 1960's most services for people with mental retardation have vastly
improved. Residential, educational, vocational, and recreational choices
now exist that provide for a variety of opportunities. Today no one
would suggest that all people with mental retardation should only live
in an institution, or only be allowed to work in McDonald's Restaurants,
be educated in one type of private school, or have "bowling"
as the only recreational activity. Policy makers recognize that not
all people with mental retardation are the same and that they may have
special interests and abilities that require "person centered planning".
Unfortunately the individualized choice approach that we see for residential,
educational, vocational, and recreational services still does not adequately
exist for health services. There appears to be a need for better appreciation
of the concept of "medical specialization" and how this applies
to some people with mental retardation who also have unusual health
requirements. Many
years ago there were no hospitals. Medical services were totally provided
in physician home-offices or by "house call". As medical science
and technology became more sophisticated, physicians learned that some
complex health conditions were better served in specialized settings
that eventually evolved into what we now know as hospitals. The use
of hospitals to address certain health needs then became a well-established
practice. Later, as knowledge and technology grew even more, it became
clear that even the general hospital was not adequate to manage certain
health conditions and this led to the concept of the Intensive Care
Unit. Today
there are many sub-specialized types of intensive care units in hospitals,
because of the awareness that people may have very different acute health
needs and they sometimes require highly medically-individualized specialized
services in order to survive. It is clear that when it comes to health-care
for the general population, the philosophy of "one size fits all"
does not apply. Why is this principle not appreciated when it comes
to people with mental retardation who have medically complex disabilities?
Current paradigm and policy emphasizes the desirability of people with
mental retardation to access generic health services in the community. Unfortunately
most health professionals (e.g. physicians, dentists, nurses) in the
community are not adequately, educated, trained, or philosophically
prepared to provide services to people with mental retardation. Clearly
our medical, dental, and nursing schools need to introduce new structured
curricula to address these deficiencies. In the meantime we need innovations
now to correct the health disparities that make it more difficult for
people with mental retardation to live successfully in the community. One
such innovation may possibly be found in Fairfax, Virginia at the Northern
Virginia Training Center. Building on a vast experience with health
conditions encountered in people with mental retardation, the Northern
Virginia Training Center has created a "Center of Excellence",
by academic affiliation with a number of schools, to provide highly
specialized training programs for community-based health professionals
and support staff. In addition to education and training, the professional
staff of NVTC also provides community-based services to people with
mental retardation who live in the community. This helps to build "community
infrastructure" so that people with medically-complex developmental
disabilities can be successfully integrated into the community. Perhaps
mental retardation/developmental disability policy makers should take
a look at this Virginia program and consider whether it represents a
model that could be adapted in other states and regions. It is possible that if we first address the most complex medical, dental, and nursing health needs encountered in people with mental retardation, as is being done in Virginia, the preventative and more routine health issues will begin to be understood and treated more effectively, and quality of life for people with mental retardation will improve regardless of where they live.
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