Change the definition of "medically necessary and appropriate" to incorporate the concept of "maximizing functional capability," which includes maintaining function and preventing or delaying deterioration or loss of function. (See Suggested Definitions.)
 

Require plans to develop more disability-sensitive benefit packages, with input from people with disabilities and their advocates.
 

Assure that people with disabilities and serious or complicated chronic health problems will have prompt access to health-care providers who are knowledgeable and experienced in dealing with the individual patient's particular health problems, including the option of having a specialist act as the patient's care coordinator/gatekeeper.
 

Require all plans to comply with federal and state nondiscrimination and accessibility standards--including but not limited to those in the Americans with Disabilities Act--as a condition of retaining their license to operate.
 

Limit the financial risk to health-care providers who serve high-risk/high-cost populations.
 

Require all health plans to include a mutual-risk point-of-service option. (This will give under-served people with disabilities a way of getting the care they need while encouraging plans to be more responsive to this population.) See Mutual-Risk Point-of-Service Option: A Conceptual Outline, by Laura Remson Mitchell, previously submitted to Task Force.
 

Develop an effective mechanism for spreading the cost of caring for high-risk patients in order to minimize incentives to under-serve this population.
 

Establish outcomes measures that are relevant to people with disabilities, and include people with disabilities in developing those outcomes measures!

"Medically necessary and appropriate" health services include any service (including but not limited to assistive devices, medication and treatment regimens) that is safe and effective and that can help to maximize the patient's functional capability, including any service(s) that would maintain current levels of function and prevent or delay deterioration or loss of function.
 

"Functional capability" means the ability to perform the functions that a person normally could perform in the absence of illness, disability or other impairment.
 

"Maximizing functional capability" includes both restoring biological function and providing assistive devices or supportive services to compensate for lost biological function.

Require all plans to comply with federal and state nondiscrimination and accessibility standards--including but not limited to those in the Americans with Disabilities Act--as a condition of retaining their license to operate.
 

Require plans to provide prompt access to specialty care (not just a one-time consultation) for enrollees with disabilities and serious or complicated chronic conditions. This includes referral for habilitative and rehabilitative care from providers who are knowledgeable and experienced in treating the enrollee's disability/condition.

• Require plans to provide for a standing referral to an appropriate specialty provider.

• Give plan enrollees access to all specialists affiliated with a plan, not just to those in their specific medical group.
• If an enrollee disputes a plan's refusal to authorize a covered health benefit, require the plan to cover a "second opinion" by a provider qualified to evaluate the patient's particular condition.
 

If a plan or provider group within a plan doesn't include a specialty provider qualified to treat the enrollee's condition, require the plan (or group) to pay for appropriate care from a qualified out-of-network provider.
 

Level the playing field among health plans to spread the risk of caring for high-cost patients, correct problems of adverse selection and eliminate incentives to ratchet down access and quality of care, especially for people with disabilities. With or without risk-adjustment mechanisms, this should include a requirement that all health plans include a point-of-service option. (See "Mutual-Risk Point-of-Service Option: A Conceptual Outline.")
 

Prohibit medical underwriting, and move toward a system of community rating with guaranteed issue and renewal in order to assure that those with disabilities and chronic health problems--especially those who must purchase their own coverage--aren't excluded from coverage because of unaffordable premiums. This should apply not only to managed care but also to traditional indemnity health insurance products. (NOTE: For this to work properly, it also will be necessary to achieve universal coverage. Both of these goals should be actively pursued.)
 
 

Require all plans to revise their benefits packages to reflect the needs of people with disabilities. This should be done with the active participation of people with disabilities and their advocates. Areas of concern include but are not limited to:

• Limitations on coverage for durable medical equipment that fail to recognize differences in individual needs.
• Prescription drug formularies, including therapeutic drug substitution and access to medically necessary medications that are not on the plan formulary.

 

Prohibit plans from setting arbitrary time limits on any therapy that still is medically necessary and appropriate (based on suggested revised definition) to maximize the enrollee's functional capability.
 
 

Require all plans to make consumer information (including but not limited to information related to marketing, treatments, educational programs, the plan's grievance system and any material that plans must disclose to enrollees or to the general public) available in formats that can be used by people with physical, sensory, communicative and/or cognitive impairments.
 

Prohibit health plans from discharging an enrollee to or placing an enrollee in any institutional setting without the informed consent of the enrollee or the enrollee's designated representative.
 

Establish a disability/health plan liaison office to facilitate ongoing communication between health plans and disabled enrollees (and their advocates) and to help connect both plan providers and disabled enrollees with appropriate community resources.
 

Establish outcomes measures that are relevant to people with disabilities--with the active participation of people with disabilities.
 

Require health plans to modify their provider payment methods and/or other financial incentive arrangements in order to eliminate any penalties they impose on providers who treat high-risk enrollees and any inducement those arrangements may create to under-serve this population. Financial incentives that cannot be modified to eliminate the negative impact on care for high-risk enrollees should be prohibited outright.
 
 

A standardized benefit package is necessary in order for risk adjustment mechanisms to work. It is critically important that this benefit package be designed to meet the needs of people with disabilities and chronic illnesses. (See Recommendations on Benefits Issues.) The best way to do this is to involve people with disabilities and their advocates as active participants in designing such a package.

• If disability needs are not met by the standardized benefit package, people with disabilities will be deprived not only of necessary health services but also of their civil rights, since the health-care system is often the bridge to independence and empowerment for this group.

• Warning! Simply collecting and tabulating the views of typical health-care consumers about what should and should not be included in a benefits package could be very dangerous for people with disabilities. Most of the public and most health-care professionals know little about the health-care needs of people with disabilities and certain chronic illnesses. Furthermore, most people hold deeply imbedded stereotypes about the quality of life that is possible for a person with a disability.

• Failure to recognize and respond to the needs of people with disabilities and chronic illnesses will invite long-term disaster for all, as more and more people find themselves developing such conditions while investment in research and development for new treatments ebbs due to lack of a potential market.

 

• Higher capitation rates may prevent financial pressures from pushing plans and providers into under-service; however

• Risk-adjusted capitation rates won't prevent unscrupulous individuals from claiming higher rates without delivering additional care, thereby enriching themselves; therefore

• Results will need to be monitored closely to assure that appropriate care is actually being delivered.

 

Submitted by Laura Remson Mitchell, Government Issues Coordinator
Multiple Sclerosis California Action Network (MS-CAN), National Multiple Sclerosis Society
e-mail: af752@lafn.org
1997
 


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