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

22
Kathy.
STATEMENT OF KATHLEEN H. MCGINLEY, ASSISTANT
DIRECTOR OF GOVERNMENTAL AFFAIRS, THE ARC
Ms. McGINLEY. Good morning. It is a pleasure to be here. I am
Kathleen McGinley, and I am assistant director of governmental affairs
for The Arc. The Arc is a national organization on mental retardation,
and many of you may know us by one of our previous
names, which was the Association for Retarded Citizens. We have
had a series of names over the last 50 years that reflect the movement
in the field of mental retardation.
Before I start to talk, I am going to talk about people with developmental
disabilities and mental retardation, and I have brought
a number of handouts. One is the definition of "developmental disabilities,"
and if you get that-it is a pink handout-it will show
you the broad range of people encompassed in this category. I have
also brought The Arc's resolution on managed care and long-term
supports, which reflects many of the things that Al said and I
brought the CCD principles on managed care for people with disabilities.
The issue of managed care and people with special needs is an
issue that has been under discussion for a long time in the area
of developmental disabilities and mental retardation. This morning,
I want to take some time to ,ye you some general information
about some of the health and long -term services needs of the
children and adults who fit-and I do not know if 'fit" is a good
word-the definition of developmental disabilities, because it is
such a broad group of people. Then I want to talk about some specific
concerns that we have about managed care which we see
sometimes as having goals that are totally the opposite of the stated
goals of the field of mental retardation.
The first thing I want to do is go through the definition, and if
you do not have a copy of the definition in front of you, let me just
go through a few parts of it and give you some examples of people
with developmental disabilities.
A developmental disability is a severe, chronic disability of a person
5 years of age or older which is attributable to a mental or
physical impairment or combination of mental or physical impairments,
manifested before the person reaches the age of 22, likely
to continue indefinitely, resulting in substantial functional limitations
in three or more areas of major life activity, reflecting the
person's need for a combination and sequence of special treatment
or services that are of lifelong or extended duration, individually
planned and coordinated.
Some of the people who fit this definition are people with mental
retardation, cerebral palsy, autism, spina bifida, epilepsy, emotional
disturbance, spinal cord injuries before the age of 22, so it
is a very, very broad group of people.
Because it is such a broad group of people, I am going to concentrate
more on the needs of children and adults with mental retardation
because that is really who I advocate for.
Mental retardation is not a disease. It is not something that can
be cured. Not so many years ago, it was believed that there was
something wrong with people with mental retardation, that they