March 20, 2001
TO: Members of the Assembly Committee on Human Services
FROM: Laura Remson Mitchell
Public Policy Analyst/Consultant/Writer
Member, Executive
Committee, California Disability Alliance
Due to previous commitments, I was unable to attend your Wednesday, March 14, 2001, videoconference on "Supports for Californians with Disabilities: Enhancing Independence." However, I hope you will consider these written comments in the context of that hearing as well as in any other deliberations you may be called upon to make regarding people with disabilities.
One item on the draft agenda that I saw prior to the meeting opens the door to consideration of an issue that I feel has been overlooked, or at least under-appreciated. That agenda item is "Access to income support and health coverage."
As I'm sure you know, both state and federal laws are attempting to remove long-standing disincentives to people with disabilities who currently are on public disability programs (SSDI or SSI) and who wish to return to work. This is entirely laudable. However, I am very concerned about attitudes I have heard/seen reflected by some officials working on these programs that seem to blithely assume that once a former Medi-Cal (or Medicare) recipient starts earning a large enough income, that person will simply be able to buy needed coverage in the private sector (or will be covered by adequate employer health benefits).
There are two major flaws in this reasoning:
1 - Unless a person with a disability is part of a group, he/she is unlikely to find affordable health coverage in the private market--and may not be able to get it at any price. Recent federal laws like the Health Insurance Portability and Accountability Act (HIPAA) notwithstanding, there is little if anything available to *individuals* with pre-existing conditions. Thus a person who gives up Medi-Cal to go to work and subsequently becomes ineligible for the buy-in program may find himself or herself unable to obtain affordable coverage in the private market. Even if the individual is willing and able to spend down to once again become eligible for Medi-Cal, the needed coverage simply may not be available during the spend-down period.
2 - Even if a person with a chronic disabling condition *does* manage to obtain private health coverage, chances are that the policy or health plan won't cover at least some of the items and services such a person is most likely to need. Personal assistance services is an obvious item that some individuals with disabilities need but which is seldom if ever covered by private health insurance. But many plans also omit or severely limit coverage for prescription drugs, durable medical equipment and other assistive devices, and rehabilitative therapies like physical, occupational and speech therapy.
All this makes it critically important for legislation and regulations that implement the federal and state work incentives laws to assure a seamless transition in and out of Medi-Cal for those who try returning to work.
Inadequate health coverage (both lack of insurance and under-insurance) is equally important for people with disabilities who are *not* beneficiaries of any public programs. For all of us with disabilities, the health-care system is about more than just medical treatment (as critically important as that is). The health-care system often is a bridge to our civil rights, independent living and full participation in the mainstream of American life.
If this committee truly wants to assure that people with disabilities can live independently for as long as possible, I believe it must address the problems created by disability-insensitive benefit design.
Medi-Cal recently made a modest move in the right direction by agreeing to modify a proposed regulation change. Responding to comments from me as well as from others in the disability community, DHS decided to modify its use of Medicare's definition of durable medical equipment in order to clarify that Medi-Cal covers DME for use in the community as well as for use in the home. This is an important step forward, but we have far to go.
Unfortunately, most private health plans say they use the Medicare "standard" for DME coverage, but the Medicare "reference list" that serves as a guideline is hopelessly unrealistic, is not logically justified by Medicare statutory or regulatory language, and in the long run could result in additional disability, hospitalizations and unnecessary institutionalization. (For more about this, please see the text of my presentation at the 2000 Annual Training Conference sponsored by the California Dept. of Aging and the Health Insurance Counseling and Advocacy Program (HICAP). You can find my speech at <http://geocities.datacellar.net/dhcpolwnk/HICAPspch.htm>.)
The fact is that far too many health-care policies and public programs continue to operate based on an unrealistic "black-or-white" stereotype of disability. But disability *isn't* black or white. It consists of shades of gray. Just because I don't need assistance or equipment to help me *all* the time doesn't mean I *never* need that help or equipment. Assuming otherwise may simplify some administrative tasks, but it's insensitive and counter-productive.
If I can be of any assistance to the committee as you consider issues related to disability and/or health-care policy, please feel free to call on me.
Respectfully submitted,
Laura Remson Mitchell
Member of the Executive Committee
California Disability Alliance
Copyright © 2001 by Laura
Remson Mitchell.
