Follow Up to your letter concerning H.R. 3281

Kevin M. Rudolph (turbokev(AT)iglou.com)
Thu, 14 May 1998 16:49:48 -0400

Dear Mrs. Northup,
In my letter regarding H.R. 3281, I was asking you to support the
legislation that Congressman Baesler has introduced. I stated that I'm
physically disabled with Duchenne Muscular Dystrophy, which is a disease
that causes the muscles to deteriorate severely and quickly, and I'm
ventilator or respirator dependent. Duchenne Muscular Dystrophy
practically paralyzes the person. I also stated that managed care with
just make things worse for me and atleast 400,000 others who are on a
ventilator because of their disabilities. Hazelwood and other facilities
like them cannot care for persons like me because they DO NOT have personel
who are trained for ventilators and they DON'T have the many supplies or
equipment. Ventilator patients need a lot of assistance and supplies and
managed care just makes it extremely difficult to get what we need because
of the extremely overdone paperwork.
In your response of May 7, you only presented incorrect information
because of your misconception for the facts. Your misconception alarms me.
First, you said, "the definition of "disabled" in Congressman Baesler's
bill includes not only the profoundly mentally retarded, but includes
someone who is mentally disabled, schizophrenic, physically disabled, or
someone who has had a heart problem and cannot work as a result". That's
incorrect because their two types of Disabilities: Mental Disabilities and
Physical Disabilities. Mental Disabilities include many disabilities like
retardation, schizophrenia, and so on. Physical Disabilities include
Cerebral Palsy, Muscular Dystrophy, Paralysis, and so on. The Americans
with Disabilities Act (ADA) - Section 3 - part 2 states "(2) Disability.
The term disability means, with respect to an individual (A) a physical or
mental impairment that substantially limits one or more of the major life
activities of such individual; (B) a record of such an impairment; or (C)
being regarded as having such an impairment." I suggest that you adjust
your perception.
Second, profoundly retarded do deserve quality care but they AREN'T
getting it and the many severely disabled deserve quality care just as
much. Anyone who thinks differently is truly unaware of the facts. I've
seen Hazelwood and it isn't provide its residents with quality care because
most them are sadated so the employees won't have as much work to do. What
about quality of life? Don't we have a right to it also? Our lifes are
worth as much as anyone else's life and we should be able to enjoy our
life. Being sadated doesn't give people quality of life.
Third, the bill being introduced would no longer let states force disabled
persons who are over 18 into managed care facilities, programs, or
insurance packages. Currently, Kentucky and other states are forcing
disabled persons over 18 into managed care. In Kentucky, medicaid patients
are being put on a managed care insurance package called PASSPORT, which
has added more steps and paperwork to the process of getting health care
services. For instance, to see a doctor, you have to get their
authorization and they have to get the doctor authorization in writing.
Managed Care DOES NOT MAKE IT CHEAPER FOR THE GOVERNMENT, it makes it more
costly because of complicated, endless steps and paperwork. So manged care
isn't the long or short term answer.
Finally, you implied in your letter that we should be in places like
Hazelwood instead of getting care at home. I hope that isn't what you
meant but you've done worse like bad campaigning and rallying your
neighberhood to stop a group home for disabled to come into your
neighborhood.
Wake up and smell the coffee.

Dear Mr. Rudolph:
Thank you for contacting me with your support for H.R. 3281, which has
been recently introduced by Congressman Baesler.
As you know, I have always been supportive of the residents of Hazeiwood
and their families. It is because of my concern for these residents in the
long term, that I cannot support legislation which claims to benefit these
residents, but only provides a quick fix to a more serious problem. What we
need to do is to make certain that whatever type of health care is provided
by the state meets the needs of the profoundly retarded for the short and
long term.
The fact is that managed care is being used by states to provide
appropriate health care and to control costs for many of their clients so
that the most needy people will still have access to advanced and expensive
health care services. Without this option, budget constraints were forcing
states to either eliminate certain health care benefits, or to lower the
quality and services to everyone on their programs. Some states are having
tremendous success with managed care and others are working out the kinks,
but are heading in the right direction. By freeing up dollars used for more
routine care, we protect dollars for the most skilled care to those who are
most frail. While the Balanced Budget Act provided some exemptions for
certain disabled children under nineteen, any wholesale change to this
provision could have a disastrous effect for those who are profoundly
retarded.
Bills like H.R. 3281 are easy to introduce because they do not look at the
long term picture. First, the definition of "disabled" in Congressman
Baesler's bill includes not only the profoundly mentally retarded, but
includes someone who is mentally disabled, schizophrenic, physically
disabled, or someone who has had a heart problem and cannot work as a
result. The Congressional Research Service confirms that this definition
would open this exemption from managed care to many more categories of
disabled than just the profoundly mentally retarded because it is only
based on those who receive both Medicaid and SSI.
When you begin to make exceptions from managed care for more and more
individuals, it is the neediest people which get hurt the most. Since the
cost to provide care would be more expensive for those exempted, the
federal government would have to reimburse states at a lower rate. Such
across the board cuts could force the state of Kentucky to reduce care for
all individuals. We cannot allow that to happen!
Quite honestly, I am concerned about the path which has been chosen by the
sponsors of this bill. They have failed to look at the long term needs of
families with special needs, and instead have suggested a method which is
unlikely to be approved by Congress and, if it is approved, could have
unintended consequences for those it claims to help.
I know that you and other parents are concerned about the quality of care
which is provided to your children, and I understand these concerns and am
working to ensure that the best care is available. While Members of
Congress continue to introduce bill after bifl to change the requirements
of participation in managed care, the truth is that many managed care
organizations already provide excellent care for both normal and special
needs patients. They are limiting excessive use so that "medical money"
remains available and targeted on those that need the services they
receive. To monitor quality of care, consumer satisfaction, and outcomes
achieved by managed care organizations, the federal government is
completing three separate studies this year. I believe that these studies
will detail where Congress should focus to ensure high quality health care
to patients.
The residents of Hazelwood deserve the best health care possible, and I
believe this can be achieved by working with the state. I believe that
these residents deserve high quality health care, and I will contact the
state on your behalf in that regard.
I care deeply about the residents of Hazelwood, and I have always
represented their needs. I can assure you that I will continue to provide
my support to measures I believe will help these residents for many years
to come.
Sincerely,
Anne M. Northrup

Her Washington Office is at:
1004 Lonowoath House Office Building
Washington, DC 20515
202-225-5401
Fax: 202-225-5776
E-Mail: rep.northup(AT)mail.house.gov

Her Kentucky Office is at:
Mazzoli Federal Building
600 Martin Luther King Jr. Place
Suite 216
Louisville, KY 40202
502-582-5129
Fax: 502-582-5897

Committee:
Appropriations

Subcommittees:
Labor, Health and Human Services, Education, Treasury, Postal Service, and
General Government

Kevin M. Rudolph E-Mail: turbokev(AT)iglou.com
Kentucky Colonel WWW: http://members.iglou.com/turbokev
Louisville, Kentucky 40214 The Bluegrass State