A Report on the Actuarial, Marketing, and Legal Analyses of the CLASS Program. D. Cognitive Impairment and Need for and Use of Long-Term Services and Supports by Adults with Cognitive Impairment Caused by Other Diseases and Conditions

10/14/2011

The discussion in this report has focused on the need for and use of long-term services and supports by older people with cognitive impairment and people with dementia. As noted at the beginning of the report, some, and perhaps many, adults of all ages who have cognitive impairment due to diseases and conditions, such as mental retardation, other intellectual disabilities, severe mental illness, traumatic brain injury (TBI) and acquired immunodeficiency syndrome (AIDS), will also be eligible for long-term services and supports based on the two specified CLASS Program benefit triggers. Adults with cognitive impairment due to diseases and conditions that preclude them from working throughout their adult lives may not be able to enroll in the CLASS Program because of the work and earned income requirements for enrollment. Nevertheless, in thinking about how to operationalizeand implement the CLASS Program benefit triggers, it is essential to consider the implications of any proposed approaches for adults with cognitive impairment due to these other diseases and conditions.

By definition, people with mental retardation and many people with other intellectual disabilities have cognitive impairment. Most people with mental illness do not have cognitive impairment, but some individuals with severe depression, schizophrenia, bipolar disorder, and other severe mental illnesses do (Aleman et al., 1999; Butters et al., 2004; Friedman et al., 2001; Mojtabai and Olfson, 2004; Moore et al., 2004; VanGorp et al., 1998). Likewise, some people with TBI and AIDS have cognitive impairment, and others do not.

Individuals with cognitive impairment caused by mental retardation, other intellectual disabilities, severe mental illness, or other diseases and conditions can develop dementia, especially as they get older. Older people with intellectual disabilities caused by Down’s syndrome, for example, are very likely to develop Alzheimer’s disease (Janickiet al., 1996). Similarly, some people with severe depression, lifelong schizophrenia, and other severe mental illnesses develop dementia as they age (Knopman et al., 2006; Kales et al., 1999).

In the United States, older people with cognitive impairment and dementia, people with mental retardation and other intellectual disabilities, people with mental illness, and people with TBI and AIDS generally receive long-term services and supports in separate service systems. These service systems comprise different agencies, different professionals and service providers, different funding sources and different eligibility criteria for long-term services and supports. The extent to which each service system focuses on cognitive impairment differs, and the way cognitive impairment is defined and measured also differs across service systems.

Adults with cognitive impairment who are receiving or could receive long-term services and supports in any one of these service systems often have care needs that are not the main focus of the system. One example is people with mental illness who also have other serious physical health conditions and care needs related to those conditions that may not be met within the mental health service system. Another example is older people with dementia who have psychiatric and behavioral health conditions and care needs related to those conditions that may not be met within the service system for older people.

Policy analysts and researchers often note that the care needs of many individuals who need long-term services and supports cross the boundaries between the existing service systems. Professionals and care providers within each service system decry the lack of services within their system to meet all the care needs of the people they serve and frequently try to expand their services to meet all these needs. An alternative would be a more broadly based system of long-term services and supports that would provide services for people of all ages who need the services care, regardless of the disease or condition that causes that need. When such a system is proposed, however, many professionals, service providers, individuals, families, and advocacy organizations worry that important clinical expertise and other features of the age-based and condition-based service systems would be lost.

The problem of separate service systems and people whose needs for care cross the boundaries between those systems will certainly not be solved through the definition and operationalizationof terms and concepts in the CLASS Program benefit triggers. On the other hand, one can hope that the benefit triggers can be defined and operationalizedin ways that do not exclude adults with cognitive impairment caused by any disease or condition. In the short term, that objective can probably be best achieved through consultation and review of proposed approaches for operationalizing the benefit triggers by clinical experts and policy analysts who are knowledgeable about how cognitive impairment is defined and measured in each service system. In the longer term, it will be important to collect and analyze data on people with cognitive impairment who are enrolled in the CLASS Program and are later either allowed or denied long-term services and supports.

Recommendations. The CLASS Program benefit triggers should be operationalized and implemented to include not only potentially eligible older people with cognitive impairment and dementia but also potentially eligible adults of any age with cognitive impairment caused by any disease or condition.

Proposed definitions of terms and concepts in the benefit triggers and any proposed assessments of cognitive impairment for the CLASS Program should be reviewed by clinical experts and policy analysts who are knowledgeable about how cognitive impairment is defined and measured in the separate systems that provide long-term services and supports for adults with cognitive impairment and adjusted to the extent possible to address their concerns.

Once the CLASS Program is implemented and the 5-year waiting period for benefits has passed, data should be collected on people with cognitive impairment who determined to be eligible or ineligible for services based on the existing benefit triggers, and adjustments should be made in the benefit triggers to reduce any noted disparities in eligibility for people with the same or similar levels of cognitive impairment, regardless of the disease or condition that causes the impairment.

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