Benson Nadell

Program Manager
San Francisco Long Term Care Ombudsman Program
Family Service Agency of San Francisco

I wish to enter into Testimony the following comments. I am speaking as the Program Manager of the San Francisco Long Term Care Ombudsman Program, of the Family Service Agency of San Francisco, on contract with the Commission on the Aging, City and County of San Francisco. The Long Term Care Ombudsman Program is Federally Mandated , under the Older American Act, to identify and investigate complaints from, or on behalf of elderly residents of long term care facilities , that result from the action , or inaction of providers, facilities, or other Governmental Agencies that adversely affect their health, welfare or rights.

In practice, the clients of the Ombudsman Program are the most frail and vulnerable cohort, being by definition dependent on individuals, facilities, and systems for their care , and Quality of Life.

It is from this perspective that I am making these comments:

Nursing Home Data and Outcomes:

Since the Federal Standards , derived from OBRA 87, have been in place, there have been standards for determining outcomes , rather than process, of Quality of Care and Quality of Life.

These standards are national for all Certified Skilled Nursing Homes.

The key to determining Quality of Care Outcomes, is a standardized Assessment instrument, to be updated as needed, which shapes individual care plans.This MDS , or minimal data set, is for all care, not just single -diagnostically driven care. That is, it the Assessment Process is itself standardized witha set operational definitions for each level of care, and is also comprehensive in that it includes all care needs , not just those covered by Medicare .

"GIGO:"

One concern I have with the consolidation of information is that the same limited information will be portable without the whole set of care needs being accessible. It is possible that the coding will only be a modification of the DRG categories, with varying degrees of collapsed information. This will exclude important consumer information from any retrieval. To put it in blunt terms: GIGO " garbage in , garbage out: Just because certain aspects of care are not covered by MEDICARE should not mean that information should only pertain to what is covered.

Some recommendations:

That the MDS be used as a standard of assessment across providers so that information is not lost. This would have preventive value in the environment of managed care where future money can be saved by triggering interventions ahead of the curve.

Also if there is a Standardized assessment tool , prior to institutionalization , than there will be greater portability of information without any loss. We must recognize that a lot is lost in translation between providers ,each of which carves out its own proprietary way of structuring patient data.

Who Owns the Information:

• Under both Federal as well as State statutes , Consumers have the right to informed consent. They have the right to access their own medical records. Although the provider owns the physical records, the consumer owns the contents of those records. This is true in the institutionalized setting of long term care, but advocates have to continually monitor provider procedures to realize this in practice.
• Measures of Quality of Life emphasize patient involvement in care, and in decision making. However, in the rather abstruse world of providers, this access to information by consumers is not realized. In a recent letter from a PRO, responding to a request for appeal for Medicare continued coverage, permission had to be obtained from the provider to release information to the patient. There is still a pervasive paternalism in health care, that consumers do not have access to information.
• There is nothing in the proposed standards pertaining to consumer access to this information. This makes it difficult for consumers and their advocates to appeal denials. Even if the information is incomplete, the consumer should be able to obtain their own health care information, in order to determine the basis on which coverage continues or discontinues.
• Electronic autographs are useful. However in certain contexts, like nursing homes, physician signatures should be conditional on actual contact with patients.To delegate Medical observation to less trained eyes and ears can be risky. Many residents of nursing homes complain they never or rarely see their physicians. The essential communication from the frightened elderly patient and doctor is already minimal. I am afraid that allowing electronic signatures in certain contexts might even more minimize this essential patient -doctor contact. However for billing purposes it might be good as long as their are additional safeguards against billing errors.
• Privacy:

We think the recommendations with respect to privacy of certain health information, should be stronger, and not couched in delegatory language. There already exists very strong language guaranteeing the privacy of such information. The problem is not the language but the enforcement of those protections. For instance, in the present , and future environment of managed care, can consumers be protected against discrimination of coverage based on determinations by providers over benefit / burden analysis so that treatment decisions are not even offered ? Or will information of persons be shared without respect for privacy issues , so that providers are limited as to what they can communicate as treatment options to patients?Will information be shared to make actuarial decisions at the time of enrollment/ Such questions are not satisfactorily dealt with in the section 264 (b) subjects of recommendations. Whatever regulations are drafted, should address existing statutory protections , and should be anchored in the US Constitution and case law for starters.

Consumer Access to Billing Information:

Anyone who has helped an elderly consumer of medical services, figure out the thicket of bills knows the difficulties involved. The burden is placed on the consumer and their advocates to make sense of how much is owed, what is covered and not covered. Not all can be attributed to infirmity. It is my contention that the reason why bills are difficult to figure out is intentional.

When I first reviewed the proposed regulatory changes for transactions I made the assumption that the consumer would be the beneficiary of these streamlining efforts. On reviewing my comments above, I realize this was not the intention, except for efforts towards protecting confidentiality. The proposed regulations represent the interests of those providers and their concerns around billing procedures, and standards for transactions between plans. Perhaps these streamlining efforts will save money. I doubt it. As a consumer advocate , and LTC Ombudsman for a growing segment of elderly wading through shifting decisions of what is covered, and not covered, as expressed in billings delivered in their mail, I find my self positioned on their side, when reviewing this section of the regulations. I have to say, that the consumer does not have much of an explicit mention in these regulations.

I believe that one of the key standards to any streamlining efforts of billings, codes , etc. is the necessity to make billing detailed, easy to understand, with clear instructions to the consumer as to how to appeal billings. This could be possible, as could real health reform which would benefit consumers, and not just providers, and the various payors.