Tuesday, August 18, 2009

Health Care Reform

Are people with Down syndrome discriminated against in our health care system? YES. Even Quinn who has been PERFECTLY healthy has been. To me, it is a disgrace that this happens.

Here is the National Down Syndrome Congress Position Statement (found here online):

Why do we need health care reform?

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.

What features must be included in any health care insurance reform plan?

• 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.

Should long-term care (Medicaid) be included in any health care insurance reform proposal?

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

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