CFILC Issue Brief:
Principles Protecting Medi-Cal Beneficiaries with Disabilities
There have long been rumblings in Sacramento to require Medi-Cal beneficiaries with disabilities and those over 65 to join Medi-Cal managed care plans. In response, members of the disability and health care communities have joined to educate the public about the dangers of making managed care mandatory for people with disabilities, as well as about steps Medi-Cal managed health plans must take if they are going to provide equal access to services for people with disabilities.
Currently, Medi-Cal managed care is available in 22 counties. In 8 of these counties, all beneficiaries receive services through managed care. In the other 14 counties, some beneficiaries have the option of fee-for-service, or “regular” Medi-Cal. People who receive Medi-Cal because of their disability or because they are over 65 are some of the beneficiaries who can choose between managed care or fee-for-service. (There are a few exceptions in which people with disabilities do not have the option of managed care.) People who get Medi-Cal for other reasons, including children without disabilities and families on Medi-Cal, have been required to join managed care wherever it is available in the state.
Keeping managed care optional has been important to people with disabilities for several reasons. First, because the nature of managed care shifts control from the patient to the health care provider, people with disabilities fear that they will be denied access to needed specialty care, or that they will not have a say regarding which doctor they see or what treatment they receive. In addition, people who have a choice often stay in fee-for-service because they have found providers they trust, a difficult task for people with serious conditions. Unless a managed care plan is committed to providing equal access to quality care, people with disabilities have very difficult experiences in a managed care system.
At the beginning of 2003, the Legislative Analyst’s Office (LAO) revived a 1996 proposal to require most Medi-Cal beneficiaries with disabilities to join managed care plans. Health care and disability advocates and Medi-Cal enrollees have raised many concerns about the LAO proposal. They note that many people with serious conditions depend on fee-for-service to protect their health. Many are concerned that any program changes would be done too quickly, before managed care plans are adequately equipped with facilities, providers, or sufficient knowledge of how to serve this population, leading people with disabilities to fall through the cracks almost immediately.
A general fear is that the hope of potential savings is taking priority over the welfare of this population. The LAO proposal was based on how much money the state would save. Research by the Center for Health Care Strategies showed, in fact, that mandatory managed care would probably be more expensive in the short-term, and may not provide cost-savings in the long-term (see their paper at the Medi-Cal Policy Institute link below). In either case, program changes should not be instituted at the expense of our most vulnerable populations.
And while neither fee-for-service nor managed care Medi-Cal has sufficient mechanisms for protecting enrollees’ rights, the present system offers the crucial option of choice. Some enrollees with disabilities do prefer managed care. But some plans have suggested that they could afford to do a better job of serving this population—by increasing access to such things as care coordination, continuity of care, and providers—only if the entire population were required to join. Unfortunately, this means that the state would not be able to see the goods before it buys them. This is not to say that plans are poorly intentioned. But at this time, there are too many incentives for Medi-Cal managed care plans to cut costs in ways that harm beneficiaries, and too few repercussions for plans that administer poor or inaccessible care, for the state, in good conscience, to require beneficiaries with disabilities to enroll in managed care. The only reason a state should want its low-income seniors and people with disabilities to switch to managed care is because the state has real evidence that the switch would significantly improve their care.
To address these concerns, a group of advocates representing Advocrat, California Disability Alliance, the Center for Disability Issues and the Health Professions (CDIHP), the California Foundation of Independent Living Centers (CFILC), Disability Rights Advocates (DRA), Protection and Advocacy, Inc. (PAI), the National Health Law Program (NHeLP), and World Institute on Disability (WID) created the Task Force on Managed Care for Californians with Disabilities. The Task Force designed the following principles to educate legislators, government agencies and health plans about how to provide equal access for Medi-Cal beneficiaries with disabilities. Managed care must remain optional for people with disabilities on Medi-Cal. Realizing the pressure to change the current system, we have drafted principles that apply to both the current system, and to any program changes that affect this population. As you read, we ask you to remember that people can acquire disabilities at any time, and that people with both temporary and permanent disabilities depend on the issues we describe below.
The Medi-Cal Policy Institute’s website can answer many questions you may have about Medi-Cal fee-for-service and managed care. See their research on Medi-Cal managed care at:
http://www.medi-cal.org/topics/view.cfm?itemid=20880.
Choice
The key to independence for people with disabilities is choice.
1. Enrolling in managed care must remain optional for Medi-Cal beneficiaries with disabilities.
2. Informed choice and empowerment of the Medi-Cal enrollee should underlie all program changes. People with disabilities should not have to sacrifice control over healthcare decision-making.
3. Improved access to quality of care, not short-term cost savings, must be the driving force for moving a person with a disability into Medi-Cal managed care. Any cost savings that occur, whether short-term or long-term, should be captured and kept within the Medi-Cal system to improve the availability and quality of health care services for persons with disabilities.
4. Reimbursement or capitation rates must cover the actual, real costs of providing medical care to people with disabilities and chronic health conditions. Serving individuals with disabilities may be more expensive than serving other populations. This level of service may also require initial investment to produce long-term savings. The managed care organization must not have financial arrangements that create an incentive to withhold medically necessary care. The rates should not be based on arbitrary assumptions of cost-savings
Quality
5. Any efforts to move people with disabilities from fee-for-service into managed care should take advantage of systems and services that would improve the quality of life for these beneficiaries. Such systems and services include but are not limited to:
· Ensuring that available health care providers have significant experience in the provision of health care for people with disabilities.
· Guaranteeing that the unique needs of people with disabilities are met by adapting pre-existing programs, tailoring new programs, or creating specific programs as needed.
· Assuring that health maintenance and wellness programs are accessible to people with disabilities and relevant to their needs.
· Assuring that managed care networks include an adequate numbers of providers to serve this population.
· Developing a genuine system of coordinated care,that provides the range of social and medical services a person needs to maximize his/her functional ability.
· Assuring linkages with non-Medi-Cal services, such as transportation and assistive technology needed to serve this population.
· Assuring that new pharmaceuticals, related tests, and new treatment modalities will be accessible and available in the care delivery system.
· Emphasizing creativity and flexibility to assure responsiveness to individual needs in a timely manner.
6. The primary goal of any program changes must be to maintain the health and functional ability of people with disabilities. This includes functioning at home, school, work, and in the community. To this end, managed care services must include access to specialists (including using the specialist as case manager/care coordinator when appropriate), assistive technology, and community-based services, and must be designed to move away from an institutional bias (e.g., nursing home and other institutional placement).
7. Quality standards and monitoring of these standards must be developed specifically with respect to health care for persons with disabilities. Standards and monitoring should:
· Take advantage of lessons learned from other states’ experience with the transition of people with disabilities into managed care.
· Use consumer satisfaction and health status prior to enrollment in managed care as its baseline
· Take advantage of service coordination as a mechanism for streamlining the process to more efficiently use resources.
· Be developed and informed by ongoing meetings between all stakeholders, including Medi-Cal beneficiaries with disabilities or their representatives, and advocates from diverse disability communities.
8. Representatives of enrollees with disabilities must have substantive, decision-making roles in the development of models and contracts for Medi-Cal managed care and the development and implementation of state oversight of these models.
Disability representatives in this oversight group should include beneficiaries with disabilities, representatives of children with developmental and other disabilities, and qualified advocates with disabilities. Disability representatives should help develop standards for appropriate services for these populations and advise state agencies on innovative, cost-effective approaches to improving care for these communities. Diverse disabilities should be represented in the oversight group and advise on reasonable accommodation issues.
Access
9. Enrollment in Medi-Cal managed care must not reduce :
· Health benefits and services
· Access to appropriate specialists.
· Timeliness of services.
10. Managed care organizations and participating providers must comply with all relevant requirements of the Americans with Disabilities Act of 1990, Section 504 of the Rehabilitation Act of 1973, and the Unruh Civil Rights Act as a basis for participation in the Medi-Cal program, with active monitoring of this requirement.
The state should describe how it will monitor compliance and respond to reports and evidence of disability discrimination. Managed care organizations must similarly monitor their contractors’ compliance.
The state should provide resources and technical support to enable small, safety-net Medi-Cal providers to comply with these laws. Compliance includes, but is not limited to, providing:
· Consent forms, care instructions, medication labels and instructions, plan policies and changes in policy, payment information, grievance and appeals forms and any mailings in accessible formats for people with vision or other disabilities.
· Sign language interpreters and assistive listening technology for people from the deaf and hard-of-hearing communities.
· Accessibility of all facilities, medical equipment, services, and programs
· Basic training of providers, medical groups, and staff in cross-disability awareness, accommodating and interacting with people with disabilities, and providing effective and appropriate treatment.
11. For all managed care organizations, the contractual definition of “medically necessary care” must assure the provision of all items and services (including equipment and pharmaceuticals) needed to preserve, maintain and maximize a patient’s functional ability, and to promote and preserve the patient’s ability to live independently in the community.
By adhering to these principles and using them as a guide, policy makers can facilitate equal access to quality Medi-Cal services. By putting members with disabilities on the road to better health, Medi-Cal would allow, support and propel people with disabilities’ full participation in community life.
These principles were created by Randy Boyle (National Health Law Program),
Rhys Burchill, Maria Iriarte (Protection and Advocacy, Inc.), June Kailes, (Center for Disability Issues and the Health Professions), Gabrielle Marcus (Disability Rights Advocates), Laura Remson Mitchell (California Disability Alliance), Deborah Kaplan (World Institute on Disability), Curtis Richards (Advocrat), Burns Vick and the California Foundation for Independent Living Centers.