Medicaid Managed Care - U.S. Senate Special Committee on Aging

23
were sick, or that their disability was a punishment on their parents
for doing something bad. It was no wonder, then, that there
was not anything available for people in the community, and so
many people with mental retardation in the past ended up in large
institutions, way outside of town. Because of this history, it is no
wonder that discrimination and stigma still abound.
In a lot of ways, times have changed. Most professionals in the
field of mental retardation know that what we must do now is
work to ensure that society and the community offer the person
with mental retardation the opportunity to develop skills be
healthy and independent. The person with the disability, their family,
friends and the professionals, in the best world would work together
on this goal.
The key component of this new approach is that it is person-centered,
and it focuses on the needs, desires and choices of the individual-or
a surrogate, if the person's disability limits his or her
choice-making skills-and we call this self-determination. The control
is in the hands of the individual consumer as much as it possibly
can be, and that is where we say where we are now. But the
specter of the past still haunts us and one of the places where it
is particularly haunting is in the area of health care.
For years, people with mental retardation and related disabilities
have had an extremely difficult time finding doctors, dentists, gynecologists
and other medical professionals to serve them. There have
been many reasons for this-people were locked away so mainstream
doctors did not know them; people were locked away and
medical education ignored their existence; people were often considered
harder to treat because their physical and mental conditions
required doctors and dentists and others to take more time and
more care, and to explain things simply and in detail.
People who are elderly often have these same kinds of needs, but
they are a more well-known population, and-I hate to say it-but
they often have a lot better health insurance than people with
mental retardation.
Now that children with mental retardation are growing up at
home and going to school in the community and living and working
in the community, they are becoming more known to the medical
profession. Families have found doctors and dentists and therapists
for their children who finally care about them. Adults have found
dentists and gynecologists who care about them and treat them
without fear. The possible loss of this relationship if they are forced
into managed care is one of the major concerns of people with mental
retardation and their families.
Many of the needs of these individuals are the antitheses of some
of the manifestations of managed care. They need access to a number
of medical professionals. They need specially trained professionals
or professionals who have developed expertise in working
with them. They need things explained to them in clear detail an
as I said earlier, it may take a long time for a person with mental
retardation or another disability to go to the doctor; it is not a
quick, in-and-out visit.
As I said earlier, mental retardation is not something that can
be cured, and many of the health and health-related needs of people
with mental retardation do not lead to a cure-they may not