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Chapter 4. Recommendations to Federal and State Policymakers

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Chapter 3 articulated a set of principles to guide the organization and delivery of services to people with disabilities who are enrolled in Medicaid managed health care and long-term support plans. Drawing upon those principles, this chapter contains advice to federal and state policymakers to ensure that people with disabilities gain access to the full array of health care and long-term supports they need while enrolled in a Medicaid managed care program. The advice to federal policymakers is directed to both members of Congress and executive branch officials, primarily HHS officials. The advice to state policymakers is directed to state legislators, governors, budget officials, state Medicaid officials, and officials of other state agencies responsible for overseeing the delivery of Medicaid-funded services to people with disabilities.

Recommendations to Federal Policymakers

Reviewing State Managed Care Requests


Given the growing interest in applying managed care principles to the organization and delivery of LTSS, CMS should develop a separate protocol for reviewing managed LTSS waiver/demonstration requests.

RECOMMENDATION #1: CMS should prepare and disseminate a written protocol outlining the criteria it intends to use in reviewing state demonstration/waiver requests to operate LTSS under a managed care format. This protocol should take into account the 22 principles set forth in chapter 3 of this report and be used for proposals under all waiver authorities, including stand-alone LTSS requests, as well as requests to integrate the management of health care and LTSS for Medicaid-only recipients and dual-eligible beneficiaries.

The states, collectively, have had limited experience in administering Medicaid managed LTSS. All interested parties have a right to know in advance the criteria CMS officials will use in deciding whether to approve such requests. The proposed protocol will contribute to the transparency of the review and approval process by setting forth CMS’s expectations in advance.


At present, responsibility for reviewing state managed care proposals involving the provision of LTSS rests almost exclusively with CMS. As a result, HHS does not take full advantage of the disability expertise that exists in other departmental units.

RECOMMENDATION #2: In reviewing state waiver/demonstration requests involving the provision of LTSS, CMS should enlist the assistance of disability experts from other components of HHS.

Several major HHS units are responsible for serving people with disabilities, including the recently established Administration on Community Living (ACL), which has extensive staff expertise in serving frail seniors and people with physical and developmental disabilities; the Substance Abuse and Mental Health Services Administration, the focal point for services to people with chronic mental illnesses and substance abusers; and the Health Resources & Services Administration, which has staff with extensive expertise in serving children with chronic illnesses and disabilities. Better decisions are likely to result from marshaling the full resources of HHS in reviewing state waiver/demonstration applications involving the provision of LTSS to selected populations of Medicaid beneficiaries with disabilities.


A number of states have elected to exclude institutional services from their Medicaid LTSS proposals, thus offering MCOs weak incentives to develop HCB alternatives to institutional care.

RECOMMENDATION #3: CMS should require states that are planning to deliver LTSS through managed care contracts to include in their LTSS coverage for both institutional and HCB services. This requirement should be built into the “terms and conditions” governing the operation of the state’s approved waiver/demonstration program.

The inclusion of institutional services makes sense on two levels. First, the co-management of institutional and HCB services makes it easier to transition beneficiaries and dollars from nursing facilities, ICFs/MR, and IMD to community-based service settings. Second, experience demonstrates that states usually achieve aggregate savings when people are shifted from institutions to home and community settings. Thus, two primary objectives of managed care are achieved—improving systemwide cost-effectiveness and honoring core disability values, as summarized in the first four principles in chapter 3. When institutional services are carved out of the LTTS array, MCOs and their subcontractors have little incentive to deflect people—especially people with extensive service needs—from institutional placements or to assist in transitioning current institutional residents to the community.


Waiting lists for HCBS are growing in many states as a result of continued, recession-induced budget pressures. Therefore, it is important that CMS strictly enforce the MOE clause in existing Medicaid law and insist that savings achieved through program efficiencies be used to expand access to HCB supports.

RECOMMENDATION #4: CMS should enforce the “maintenance of effort” requirement contained in Section 2001(b) of the Patient Protection and Affordable Care Act and require states to reinvest savings achieved by lowering institutional admission rates and returning NF, ICF/MR, and IMD residents to the community in expanding access to, and the quality of, HCB supports.

With hundreds of thousands of Medicaid beneficiaries on waiting lists for HCB services, it would be unconscionable to divert savings to filling gaps in state budgets or increasing MCO profit margins. Decisions regarding the most effective strategies for redeploying savings should be left to the states in collaboration with their managed care contractors and disability stakeholders (see discussion under Principle #15 in chapter 3).


At present, CMS lacks the staff capacity to review, approve, and oversee implementation of the growing number of state managed care waiver/demonstration programs.

RECOMMENDATION #5: CMS should be allotted the personnel required to review, approve, and oversee implementation of state managed care waiver/demonstration programs and carry out its other, related statutory responsibilities.

The ACA assigns to CMS broad new responsibilities for administering multiple initiatives to reform the U.S. health care system. Yet these new responsibilities have not been accompanied by an influx of additional personnel. In fact, the agency has about the same number of employees today (4,900) as it had during the Carter Administration in the late 1970s. [i] The staff qualifications required to administer programs falling under the agency’s jurisdiction today are far more complex and varied than they were three decades ago. The recent wave of state Medicaid managed care proposals illustrates the challenges facing CMS officials. Not only do officials have to possess the technical skills to analyze complex, multifaceted state proposals, but they need a sufficient number of qualified personnel to monitor state performance against established quality benchmarks. At present, CMS lacks the resources to perform these essential functions, especially ongoing monitoring of state performance.


An appropriately designed managed care plan can serve as a comprehensive platform for aligning service delivery policies and practices with a state’s broad disability policy goals, thereby improving the quality and cost-effectiveness of services. However, managed care will not rectify basic flaws in federal statutes governing the federal-state Medicaid program.

RECOMMENDATION #6: Congress should restructure Medicaid laws governing LTSS to eliminate the bias toward institutional services and emphasize instead person-centered community supports designed to promote the inclusion of beneficiaries with disabilities in the mainstream of American society.

The principal aim of the ACA is to reform the nation’s dysfunctional health care delivery system. The act also includes a variety of incremental changes in long-term services policies, with the common aim of improving access to HCB services and supports. But the basic statutory approach to LTSS is not addressed in the 2010 law—a fact that Congress acknowledged by including in the legislation a nonbinding “sense of the Senate” commitment to “address long-term services and supports in a comprehensive way” during the 111th Congress (Sec. 2406, P. L. 111-148). As the 112th Congress winds down, however, this promise remains unfulfilled.

For years, Medicaid policy experts have argued for a top-to-bottom recodification of existing statutes in order to rationalize the program’s multiple social roles and bring statutory provisions into alignment with contemporary goals for the program’s multiple constituencies. In the area of disability policy, the focus should be shifted to home and community-centered approaches to delivering publicly financed supports, while affording beneficiaries enhanced opportunities for independence, social integration, and self-direction. The expanded use of managed care delivery systems, fundamentally framed around the delivery of acute health services, makes the need for comprehensive statutory reforms even more imperative. Among the principal aims of such legislation should be to accommodate the widely ranging support needs among people with disabilities and place LTSS on an equal footing with health care services.

Enhancing the Quality and Accessibility of Long-Term Services and Supports


The ACA recognizes the critical role advanced information management systems can and must play in operating a modern health care delivery system. But thus far, little attention has been directed toward improving information management systems within the LTSS arena.

RECOMMENDATION #7: The Federal Government should direct more time and resources to improving the information management capabilities of state/local LTSS systems for people with disabilities.

Through the leadership of HHS, major strides have been made in establishing EMR systems that allow multiple providers of health care services (hospitals, primary and specialty physicians, and other health care practitioners) to gain instantaneous access to a patient’s records, thus enabling them to coordinate the delivery of person-centered care more effectively and efficiently (see discussion under Principle #12). But to date, federal IT funding initiatives have been focused almost exclusively on acute health care information systems. Few resources have been devoted to improving MISs in the long-term services arena. This situation will have to change if states are to deliver LTSS through managed care entities.

Ready access to information and data is an essential tool in a managed care system. As is the case in the health care sector, HHS should provide (a) advice and assistance to states in mapping out the system design features of an MIS for LTSS that is compatible with (or a component of) the MIS applicable to acute health care plans in which beneficiaries are enrolled; and (b) financial incentives to public and private providers of LTSS to purchase the hardware and software necessary to participate in the new or redesigned statewide MIS. All such systems should be capable of performing the functions discussed under Recommendation #19.


The lack of well-documented, evidence-based practices is a major barrier to improving the quality and cost-effectiveness of Medicaid-funded LTSS. Yet thus far, the vast majority of federal comparative effectiveness research grants have been directed toward improving the delivery of primary and specialty health services, not LTSS.

RECOMMENDATION #8: HHS should designate LTSS as a priority area for comparative effectiveness research.

The need for comparative effectiveness research in the LTSS sector is at least as great, if not greater, than it is in the preventive, primary, and acute health care sectors. Yet none of the five priority areas established by the Person-Centered Outcome Research Institute in its initial research agenda issued in January 2012 focuses on the comparative effectiveness of LTSS. The Institute, a quasi-governmental agency established under the provisions of Section 6301 of the ACA, is expected to expend $2.5 billion on comparative effectiveness research through 2019, and it seems reasonable to expect that a portion of these funds will be used to uncover more effective ways of delivering HCB services to people with long-term support needs.


Medicare and Medicaid statutes governing the purchase of DME are poorly aligned, and as a result, dually eligible beneficiaries often do not receive the equipment they need to function as fully participating members of society.

RECOMMENDATION #9: Congress should eliminate inconsistencies between Medicare and Medicaid statutes governing DME, possibly by assigning sole responsibility for purchasing such equipment to one program.

Until Congress enacts such legislation, CMS and the states should collaborate by (a) adopting streamlined procedures for co-managing Medicare and Medicaid DME benefits; (b) granting Medicaid recipients newly qualified for Medicare benefits transition rights that guarantee continued access to all Medicaid-reimbursed goods and services for a reasonable period; and (c) creating straightforward fact sheets explaining coverage criteria for items where overlapping program policies create confusion.

Improving Outcomes for People with Disabilities


As pointed out in the Federal Government’s Healthy People 2020 plan, people with disabilities have substandard access to health and wellness services compared with nondisabled Americans.

RECOMMENDATION #10: CMS should encourage states that intend to enroll people with disabilities in Medicaid managed care plans to develop explicit strategies for eliminating existing disparities in access to health services between people with and without disabilities and promote wellness initiatives targeted to people with disabilities.

The HHS Office of Disease Prevention and Health Promotion has indicated that, compared with nondisabled persons, people with disabilities are more likely to— [ii]

  • Experience difficulties and delays in getting the health care they need.

  • Not have had an annual dental visit.

  • Not have had a mammogram in the past two years.

  • Not have had a Pap test in the past three years.

  • Not engage in fitness activities.

  • Use tobacco.

  • Be overweight or obese.

  • Have high blood pressure.

  • Experience symptoms of psychological distress.

  • Receive less social-emotional support.

  • Have lower employment rates.

As states transition Medicaid beneficiaries with disabilities to managed care plans, there will be opportunities to address the disparities in access to, and the quality of, health and wellness services. Working with other HHS units, CMS should spearhead efforts to (a) formulate and disseminate clinical guidelines and best practice protocols related to health promotion, disease prevention, and treatment among discrete portions of the population with disabilities (e.g., children and adults with physical disabilities, mental disabilities, and intellectual and developmental disabilities or traumatic brain injuries); (b) work with the HHS Office of Minority Health to gain recognition of discrete subgroups of people with disabilities as “medically underserved populations,” with all of the benefits attendant to this designation; and (c) recognize adult developmental medicine as a discrete area of medical knowledge, expertise, and training in medical schools and other health care settings.


One aim of the ACA is to foster the development of improved health outcome measures for use in assessing the quality and appropriateness of care. Outcome measures specific to the health and long-term support needs of people with disabilities, however, have received little attention thus far.

RECOMMENDATION #11: The HHS Administration on Community Living, in collaboration with CMS, the Agency for Healthcare Research and Quality (AHRQ), the Long-Term Quality Alliance, and leaders of the aging and disability communities, should spearhead efforts to develop disability-specific outcomes standards to measure access to, and the quality of, health care and long-term supports for people with disabilities.

As pointed out in the discussion under Principle #18 in chapter 3, to date the Federal Government has devoted little attention to developing and field testing outcome measures normed on various subpopulations of people with disabilities (e.g., people with physical disabilities, psychiatric disabilities, intellectual and developmental disabilities, and traumatic brain injuries). This gap is particularly wide in the area of standardized measures of quality of life, autonomy, relationships, social supports, and emotional well-being. Until this gap is closed, efforts to assess the quality and cost-effectiveness of LTSS for people with disabilities will be severely hampered. And there is little likelihood that such measures will be developed and widely adopted without strong backing and financial support from the Federal Government.

Recommendations to State Policymakers

Forging a Global, Beneficiary-Centered Managed Care Strategy


Too often, the chief factor motivating states to enroll people with disabilities in Medicaid managed care plans is a desire to curb the growth in program outlays. Little thought or attention is given to achieving beneficiary-centered outcomes.

RECOMMENDATION #12: Each state planning to enroll people with disabilities in Medicaid managed care plans should prepare a long-range strategic plan to guide the transformation of Medicaid-funded health care and LTSS for low-income people with disabilities. A state’s strategic plan should be built around a core set of disability values, and those values—independence, community integration, productivity, and personal choice and control—should be reflected in the day-to-day service delivery policies and practices adopted by the state, as well as by all managed care and related contractors the state retains to administer the service system.

The principal aim of this strategic planning document should be to lay out the steps the state intends to take over a multiyear period to improve the quality and cost-effectiveness of health care and LTSS for eligible beneficiaries with disabilities within the framework of the principles articulated in chapter 3 of this report. Some states are in a much better position than others to restructure the delivery of health and LTSS along managed care lines, but the reform process will take years to complete, even in states with extensive experience in operating Medicaid services under risk-based managed care contracts. In the absence of a global strategy, reforms are likely to proceed in a disjointed manner, thus leading to inequitable access to services and support. For example, health care delivery reforms may be poorly synchronized with changes in the delivery of LTSS. Or, people who are dually eligible for Medicare and Medicaid services may receive a more robust set of benefits—or be served through different health or LTSS plans—than Medicaid-only beneficiaries with similar needs.


Disability stakeholders can make important contributions to designing and operating a managed care system. Consequently, their assistance should be sought by responsible state officials in developing and administering a managed care program for people with disabilities.

RECOMMENDATION #13: States should actively enlist the assistance of nongovernmental stakeholders in designing and operating a managed care system targeted to Medicaid-eligible people with disabilities.

As pointed out in chapter 3, state officials can obtain valuable insights into the strengths and weaknesses of existing payment and service delivery policies from beneficiaries and disability service providers. They also can enlist outside stakeholders as valuable allies in hammering out the details of system operating policies and practices so the end product is a service delivery system in which the interests of enrollees with disabilities are the preeminent consideration.

The involvement of disability stakeholders, however, should not end with federal approval of a state’s managed care request. Instead, disability stakeholders should be asked to participate in monitoring the implementation process and provide ongoing feedback on system performance and needed plan modifications.


Expertise in serving people with disabilities can be found in various agencies of state and local government, as well as in the private sector. Given the complexities of designing and implementing a Medicaid managed care plan, states should seek the assistance of a wide range of experts in disability policy and practice.

RECOMMENDATION #14: Disability policy experts—both within and outside of state government—should be involved in designing and implementing Medicaid managed care plans involving beneficiaries with disabilities, especially when LTSS are covered under the plan.

State mental health, developmental disabilities, and A/D officials should be involved in designing and carrying out a Medicaid managed care plan that includes the delivery of health care and long-term supports to people served by these agencies. These officials have intimate knowledge of the target populations and can offer valuable insights into the barriers that are likely to be encountered in transitioning Medicaid services to such people from an FFS to a capitated payment approach. Furthermore, when the state’s managed care plan encompasses the provision of LTTS to beneficiaries with disabilities, these agencies should play key roles in overseeing the delivery of such services and supports.

In addition, state Medicaid agencies should draw upon the knowledge of local providers of disability services and supports (e.g., community mental health centers, independent living centers, area agencies on aging, A/D resource centers, and community I/DD provider and single-point-of-entry agencies). Often, these local agencies have decades of firsthand experience in working with the people they serve and can speak with great authority on factors that need to be taken into account in serving them.


States are accelerating the enrollment of people with disabilities in Medicaid managed care plans at a time when many state agencies are experiencing budget-related staff reductions and early retirements. As a result, it is not clear that states will have the personnel resources necessary to effectively oversee the operations of managed care contractors and their subcontractors.

RECOMMENDATION #15: State policymakers should grant the state Medicaid agency the authority and resources necessary to hire and retain an adequate number of qualified personnel to effectively administer its contracts with managed care and/or administrative service organizations in collaboration with relevant disability-specific state agencies.

As pointed out in the discussion under Principle #10 in chapter 3, overseeing the performance of managed care contractors requires a different set of skills than administering an FFS system. State Medicaid agencies need personnel experienced in designing and operating state-of-the-art MISs, developing a sound methodology for calculating PMPM capitation rates, and monitoring the performance of managed care contractors and their subcontractors against a comprehensive set of quality and outcome measures. In the absence of in-house capacity to perform such tasks, the state, in effect, cedes its responsibilities to private contractors, thereby relinquishing its accountability to the public.


Medicaid beneficiaries with disabilities have wide-ranging health and long-term support needs, and the current capacity of states to address these needs varies enormously from population group to population group, as well as within various geographic areas of the states. It is vitally important, therefore, that a state carefully access its readiness to enroll targeted groups in managed care plans, identify any preparatory steps required prior to enrollment, and develop a phase-in schedule that takes such factors into account.

RECOMMENDATION #16: Any state planning to enroll beneficiaries with disabilities in a Medicaid managed care program should complete a readiness assessment to determine the barriers to enrolling various subpopulations of people with disabilities and use the results of this assessment to establish a population-specific phase-in plan.

As discussed under Principle #6 in chapter 3, the needs of various subpopulations of people with disabilities vary widely—as does the state’s capacity to meet the needs of any given subpopulation. People with disabilities frequently have complex health care and support needs, and consequently, extreme care needs to be taken in transitioning their services from an FFS to a capitated payment system. The purpose of the proposed assessment is to pinpoint obstacles to transitioning various subpopulations of Medicaid beneficiaries to a managed health and/or LTSS system. Among the more prominent factors to be taken into account in conducting the assessment are the following:

  • The strengths and weaknesses of the state’s HCBS network, specific to each subpopulation with disabilities.

  • The availability of valid and reliable instruments to assess the service/support needs of specific subpopulations with disabilities and predict the resources required to address those needs.

  • The state’s capacity to transition institutional residents to HCBS settings.

  • The availability of community housing to meet the varied needs of people with disabilities who are transitioning from institutions to the community or being diverted from institutional placements.

  • Plans for ensuring that managed care enrollees receive timely and complete information on obtaining needed services and the rights, privileges, and obligations that accompany participation in the state’s managed care program.

  • A comprehensive state quality management strategy capable of assessing quality outcomes and ensuring the accessibility of services and health and welfare safeguards.

The readiness assessment should be carried out in partnership with officials from state disability agencies and other disability stakeholders (see discussion under Principle #7 in chapter 3).

Establishing the Components of an Effective Managed Care Delivery System


Among the key aims of a state’s managed care plan should be to prevent unnecessary admissions to long-term care institutions and facilitate the transition of people with disabilities from long-term care institutions to HCB settings. To accomplish these objectives, states should offer MCOs incentives to serve people with disabilities in HCBS settings.

RECOMMENDATION #17: States intending to enroll people with substantial disabilities in a risk-based Medicaid managed LTSS program should develop capitated payment methodologies that include incentives for providing such services in HCB settings (see related Recommendation #3 above). The strategies that states should consider include the following:

  • Use an all-inclusive capitation rate that factors in the cost of both institutional and HCB service, thus providing MCOs with a strong financial incentive to opt in favor of less expensive and more inclusive HCB services.

  • Use partially capitated rates for institutional care in situations where state officials conclude that MCOs are financially unable to bear the full risk of institutional placements.

  • Establish special add-on payments to the base capitation rate when people with intensive support needs are served in HCB settings.

  • Enter into a shared savings arrangement with at-risk MCOs whereby plans that exceed state-established, plan-specific target ratios of people served in HCBS settings vs. institutions are rewarded with extra payments and plans that underperform have their payments reduced through a reconciliation process.

States also should incorporate into their LTSS plans services designed to deflect unnecessary or premature institutional placements. A state’s services network should include providers of crisis stabilization services, with interdisciplinary teams skilled in dealing with medical and psychiatric emergencies, and therapeutic homes where people can stay while recovering from a medical or psychiatric episode. These and other services should be part of a comprehensive strategy for preventing avoidable admissions to medical and psychiatric treatment facilities (for details, see the discussion under Principle #9 in chapter 3).


If managed care is to improve the quality and cost-effectiveness of services to people with disabilities, it is vitally important that MCOs assemble provider networks capable of offering the full range of services and supports required by groups targeted for enrollment.

RECOMMENDATION #18: States planning to enroll Medicaid beneficiaries in managed long-term services should carefully analyze the diverse support needs among people targeted for enrollment and require MCOs to include skilled providers of such services and supports within their provider networks, as mandated under 42 CFR 438.207.

Special attention should be focused on ensuring that the service network has the capacity and expertise to serve non-English speakers, people who are blind or deaf, racial and ethnic minorities, homeless people, and other historically underserved groups. In addition, people with disabilities should have a voice in the selection of network providers, through a consumer advisory panel or by other means, and enrollees with disabilities should have the option of receiving services through out-of-network providers that will abide by MCO qualification standards, reporting requirements, and payment schedules. Moreover, traditional providers of community-based services to people with physical, sensory, behavioral, and developmental disabilities and traumatic brain injuries should be encouraged to enroll as network providers in order to enlist their extensive expertise and promote continuity of service delivery.


State-of-the art IT is an essential tool in administering a system of managed health care and/or LTSS for people with disabilities.

RECOMMENDATION #19: States should institute a comprehensive MIS to support effective, real-time administration of managed health and LTSS at both the state and MCO levels.

A state’s MIS should be fully compatible with the MIS systems used by managed care contractors and subcontractors and should include the following:

  • An electronic recordkeeping system that allows authorized personnel to access the complete health care and, where applicable, long-term supports records of all plan enrollees instantaneously so treatment and intervention strategies can be effectively coordinated and sequenced (see discussion under Principle #12 in chapter 3).

  • A system for collecting and analyzing performance data as part of a comprehensive quality monitoring and improvement system (see discussion under Principle #18).

  • An electronic system for reporting, tracking, investigating, and analyzing sentinel incidents (see discussion under Principle #18).

  • A system for gathering and analyzing encounter data and using such data to develop actuarially sound, capitated payment rates (see discussion under Principle #13).

Safeguarding the Rights of Managed Care Enrollees with Disabilities


People with disabilities frequently have complex health care and long-term support needs that make them especially vulnerable to receiving inappropriate, inadequate, or substandard services and supports.

RECOMMENDATION #20: States should establish a comprehensive quality management (QM) system to ensure the integrity of services to, and safeguard the health and welfare of, enrollees in managed health and long-term services plans that serve people with disabilities.

The same general principles used in designing QM systems for HCB waiver services should be applied in designing a state’s QM system for managed LTSS. Monitoring and oversight activities should be conducted on an ongoing basis, emphasizing performance and outcome measures, based on a continuous quality improvement model (see discussion under Principle #18 in chapter 3).


Service coordinators (case managers) play a critical role in ensuring that Medicaid beneficiaries with disabilities receive the full range of services and supports they need. It is important, therefore, that services coordination be available to recipients of Medicaid managed LTSS and that providers of such services be administratively separate from at-risk managed care contractors.

RECOMMENDATION #21: Enrollees in Medicaid managed health care and long-term support plans should have access to conflict-free service coordination (case management) to assist them in navigating the intake, assessment, service planning, provider selection, and service monitoring processes.

Because at-risk health plans (MCOs) receive flat, all-inclusive monthly payments for services rendered, they have an inherent incentive to limit the range and intensity of services to plan enrollees. For this reason, service coordination should be provided by an independent entity not affiliated with the MCO and, consequently, able to act in the best interest of the beneficiary. Another benefit of using government employees or private contractors, rather than health plan staff, is that it greatly increases the likelihood that recipients of LTSS will be able to retain their existing service coordinators, thus easing the transition to managed care (see discussion under Principle #16 in chapter 3).


Compliance with the requirements of the ADA is essential if Medicaid beneficiaries with disabilities are to gain access to the services and supports they need.

RECOMMENDATION #22: States should conduct or commission independent surveys of facility and program sites used by managed care network contractors and subcontractors to ensure that they comply fully with the provisions of the ADA and implementing regulations.

Managed care enrollees with disabilities must have ready access to all services and sites where Medicaid services are provided. Services must be physically accessible and culturally and linguistically appropriate, and capable of accommodating people with intellectual, cognitive, sensory, and psychiatric disabilities.

California recently mandated that on-site accessibility surveys be conducted in all facilities and programs operated by network providers enrolled in the state’s 1115 managed care waiver/demonstration program for seniors and people with disabilities. Early survey results indicate that physical and programmatic barriers remain in many physicians’ offices, clinics, and other health care locations more than 20 years after the enactment of the ADA (see discussion under Principle #19 in chapter 3).


Medicaid beneficiaries with disabilities frequently struggle to locate health and personal support providers capable of addressing their needs. For this reason, it is especially important that states make efforts to ensure that existing care and support arrangements for people with disabilities are retained as they transition to a managed care program.

RECOMMENDATION #23: State officials and MCO personnel should allow managed care enrollees with disabilities to maintain their relationships with physicians and other health practitioners, as well as personal support agencies and workers, wherever possible.

Continuity of health care and personal support is important—especially for people with substantial disabilities—and, consequently, managed care participants should be afforded opportunities to retain existing health and personal support providers whenever possible. They also should be permitted to change health practitioners, support staff, and health care/service coordinators when they are dissatisfied, and switch managed care plans at periodic intervals (see discussion under Principle #20 in chapter 3).


People targeted for enrollment in a Medicaid managed care program face many complex choices, and therefore, responsible state officials have an obligation to inform them fully of the available options, as well as the rights and obligations afforded them should they elect to enroll in such a plan.

RECOMMENDATION #24: States should develop and implement an aggressive education and outreach strategy to ensure that all plan enrollees (and potential enrollees) have accessible information concerning the services and supports available to them under the plan and how such services may be obtained.

States should enlist the assistance of community-based disability organizations in developing and implementing their outreach plans. Accessible multimedia educational materials and training sessions should be geared to the various learning styles and comprehension levels of plan enrollees, and such sessions should be held across the state. Managed care plan participants must receive accessible, meaningful, and clear notices about programs, services, and their rights under the plan, including enrollment rights and options, plan benefits and rules, coverage denials, appeal rights and options, and potential conflicts that may arise from relationships among providers, suppliers and others (see discussion under Principle #22 in chapter 3).


[i]. G. M. Gaul, “The Hardest Job to Fill (and Keep) in Washington: CMS Chief,” Kaiser Health News, March 11, 2012.

[ii]. “Overview: Disability and Health,” Healthy,