Goal 5: Ensure that Health Care Financing Produces Good Health Outcomes for Adults & Children with Mental Retardation

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“Let’s develop reimbursement that is respectful of the diverse lifestyles of people with MR and their families and that is tied to outcomes they value, [but] be careful…that we don’t develop policies that will cover more people, with more flexibility, without ensuring the basic level of care that we know our people need.”

High rates of poverty among adults and children with MR mean that a large proportion of them rely on publicly financed health care insurance, which is not always well-adapted to serving their needs. People with MR find that many providers avoid the program, citing low reimbursement rates, administrative burden, and fear of being inundated with underfinanced patients. Providers who are committed to treating individuals with MR report that restrictive Medicaid rules on which services are covered, in which settings, can limit use of innovative service models.

Families with private-sector coverage encounter gaps in coverage, unaffordable premium payments, and little flexibility in designing packages of services to meet their children’s needs. Cost-avoidance and cost-shifting by both public and private payers force families to try to mediate between special education programs and third-party payers and between long-term and acute care systems. Research and understanding of financing structures, to better accommodate service needs of individuals with MR, are hindered by lack of critical utilization and reimbursement data.

Action Steps:

  • Outcomes and financing: Determine relationships among diverse financing mechanisms, service packages, and health outcomes for individuals with MR. Use findings to ensure accountability of flexible arrangements for financing services.

    Potential strategies: Test effects on health outcomes, for people with MR, of diverse models for providing health care services, service packages, and financing mechanisms. Identify factors in varying combinations that affect outcomes. Determine effects of adjunct services, including respite care, transportation, child care, and case management, in combination with medical, dental, and other health services, on outcomes. Support longitudinal studies of portability of health services packages as educational, employment, and residential circumstances change. Develop methods of ensuring accountability for sufficiency and quality of health care services, including accountability for outcomes, in models for flexible health service financing.

    Definitions: Use appropriate definitions of “effective,” “cost-effective,” and “health outcomes” in research, organization, and financing of health care for individuals with MR.

  • Potential strategies: Explore expanding definitions of terms used in measuring the effects of health care financing and service models to include wellness, functionality, patient and family understanding of health maintenance and treatment regimens, capacity for consumer choice among services, and satisfaction and individualization of service packages. Calculate health care costs across all systems with responsibility for health care of individuals with MR, such as special education, and third-party payments for behavioral therapy. Support development of methods to determine cost-effectiveness of services over the lifespan, taking into consideration cost offsets among long-term, preventive, and acute care, and other factors.
  • Services: Identify a package of health care services for individuals with MR that will produce good outcomes in terms of health maintenance, management of illness, functionality, and life goals across the individual’s lifespan.
  • Potential strategies: Review currently available public and private packages of health care and supportive services for cost, quality, and consumer satisfaction. Test models of comprehensive lifetime coverage to better meet the needs of persons throughout their lives and avoid age-related disruptions of financing and services. Assess the use of criteria, including acquiring and maintaining functionality for making decisions on coverage.
  • Leveraging: Evaluate models for leveraging health dollars to maximize purchasing power by and for individuals with MR. Ensure that individuals’ coverage and access to primary and specialty health care and support services are not eroded by revisions in purchasing practices and policies.

    Potential strategies: Evaluate models for coordinated funding of pediatric, adolescent, adult, and geriatric care, including acute and long-term care, primary care, specialty services, and school-based services, through use of pooled funds, complementary financing from multiple funding streams, and other innovations. Evaluate models for tying funding mechanisms to good outcomes, as defined in the first action step. Evaluate models that enable individuals with MR and their families to choose needed health services on an individualized basis and to monitor outcomes and service utilization. Encourage third-party payers to reimburse for health care services in carefully monitored clinical trials and other studies at academic centers of excellence.

    Additional potential strategies: Provide technical assistance to States, tribes, and health care programs and providers in using Medicaid authorities to finance innovative models for providing health care, and identify and eliminate financial disincentives for such models. For example, payer rules limiting reimbursements to one visit per patient per day may mean that families must make multiple appointments with multiple providers to complete multidisciplinary assessments. Evaluate and replicate the use of incentives, such as enhanced Medicaid reimbursement rates, to encourage States to develop and/or replicate effective models that meet the needs of individuals typically not covered.
  • Cost offsets: Explore strategies to offset financial costs to providers and health services programs that are associated with meeting specialized needs of patients with MR.

    Potential strategies: Assess the relationship between different rates of Medicaid and Medicare provider reimbursement and any impact on access to health care for individuals with MR. Identify sources and amounts of costs to providers that are associated with meeting specialized needs of individuals with MR. Assess the effect of offsetting such costs on provider acceptance of individuals with MR. Assess combined and separate effects of cost-offsets and nonfinancial provider supports, described elsewhere in the Blueprint, on provider acceptance.

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