People with Down syndrome have been and continue to be
discriminated against with regard to access to health
insurance, solely on the basis of the diagnosis of Down
syndrome and without consideration of their individual
health status or health histories.
For those people with Down syndrome who do have congential
or other health conditions requiring medical intervention,
insurance companies have denied them access because
of their preexisting conditions.
The whole issue of access to health insurance places
an extraordinary burden on families and persons with
Down syndrome and other disabilities. Families and adults
with Down syndrome are forced to consider issues of
obtaining or maintaining health insurance coverage above
career and other significant life decisions. Even when
they are able to access health insurance coverage, the
financial cost can be exorbitant.
Both historically and within the context of reform
movements, people with Down syndrome and other disabilities
face considerable challenges to accessing quality care.
People with Down syndrome are entitled to receive any
and all treatments that are medically indicated. Proposed
health care delivery systems which involve rationing
of services threaten to have a disproportionately negative
impact on persons with disabilities. Quality of life
defined by persons without disabilities is not an acceptable
rationing criterion.
| • |
Universal access to health care insurance;
|
| • |
Comprehensive coverage which cannot be denied
because of health or disability status; |
| • |
No pre-existing condition exclusion or waiting
persiods; |
| • |
Portability - one does not lose health insurance
if one moves, changes jobs, or loses a position;
|
| • |
Community rated premiums, that is, health plans
must charge everyone the same rate, regardless of
health or disability status; |
| • |
No lifetime caps on medically necessary and/or
covered services; |
| • |
Choice of service provider and specialists who
are appropriately trained and committed to meeting
the medical needs of people with Down syndrome;
|
| • |
Affordability. |
Although many of the health care insurance reform proposals
do not address the issue of long-term care reform, those
that do significantly restrict eligibility for persons
with Down syndrome in ways that would deny home and community
based services and supports to them. In view of the
following circumstances:
| • |
The longstanding need for comprehensive
Medicaid reform; |
| • |
The complex nature of the needs and of the existing
system of long-term care; |
| • |
The reliance upon Medicaid funding for long-term
care services, including residential services; and
|
| • |
The barriers to service created under proposed
eligibility standards. The NDSC, therefore, recommends:
|
A reform of the long-term care system, independent of
any health care insurance reform proposal, so that fair
and adequate attention can be given to meeting the needs
of people with Down syndrome and other disabilities.
The NDSC sees the national debate over health care as
an opportunity to address the problems persons with Down
syndrome and their families face in accessing quality
health care services. We support the enactment of truly
universal, comprehensive health care that is equally available
to all Americans, regardless of health or disability status.
We believe that adequate health care is a basic human
right.
The NDSC believes that any federal or state health care
reform proposal must be based upon the principles of Non-discrimination,
Comprehensiveness, Appropriateness, and Equity. The only
acceptable health care reform proposal must offer guaranteed,
comprehensive health care to ALL Americans.
Please quote fully and reference National Down Syndrome
Congress,
Prepared for and Approved By:
The Professional Advisory Committee,
National Down Syndrome Congress
January 20, 1995 |
