Chapter 18 of The Forgotten Generation: The Status and Challenges of Adults with Mild Cognitive Limitations, by Alexander J. Tymchuk, Ph.D., K. Charlie Lakin, Ph.D., & Ruth Luckasson, J.D.

Copyright © 2001 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Individuals with mild cognitive limitations face an uncertain future because of the general lack of attention to their needs and the consequent absence of a coherent policy to address those needs. Although this inattention is a result of a number of factors, a major factor may be the relative "invisibility" of this population; simply put, because people desire to be as self-sufficient as possible and do not want to be seen as different, they do not seek out services. However, this inattention is also in part a result of the continued use of categorically driven service- and age-specific funding on the part of service providers; individuals with cognitive limitations are often told, "You are too young," or "You are too old." "That is the school's responsibility, not ours." "Try disability services." "Why aren't you working?" "You shouldn't have had any children if you knew that you couldn't care for them!" "Sorry, your son can be seen here, but you will have to go to adult services." "I don't understand why you can't read this — my 6-year-old son can read it!"

To obtain categorical funding, an individual must fit established categorical criteria. Although some individuals demonstrate needs that are similar to those demonstrated by people who fit into certain categories (e.g., mental retardation), these individuals may not meet the criteria required to obtain services or they may no longer fit the criteria as they exit school. In effect, these individuals become hidden from the social services system. Although some agencies accept moral responsibility, few can accept the financial responsibility of addressing the needs of people who do not fit criteria for which funding is received. In fact, as a result of the societal changes accompanying federal devolution, service sectors themselves struggle to serve individuals who do fit existing service criteria. Generic services also have been and remain largely unfamiliar with the needs of individuals with mild cognitive limitations.

This lack of attention to the needs of individuals with mild cognitive limitations occurs for other reasons as well. Invariably, as a group, people with mild cognitive limitations are poor, struggling to do the best that they can. However, as a result of the time required to do day-to-day tasks in order to get by, individuals with mild cognitive limitations have neither lobbied for themselves nor have had others do so on their behalf. This lack of activism or advocacy coupled with a society that increasingly demands of its citizens escalating levels of self-sufficiency in all areas of life forces those who do not have adequate knowledge, skills, or supports to remain on the margins of society. For example, individuals with mild cognitive limitations receive little or no routine health care and must rely on emergency rooms or store-front clinics. Often these individuals are uninsured, unemployed or employed periodically in poorly paying jobs, and living in inadequate housing with little residential stability or perhaps in temporary shelters because they have no home of their own. They also are at heightened risk for being reported for suspected child maltreatment, tend to be victims of abuse and domestic violence, and often are recipients of welfare. Individuals with mild cognitive limitations also appear to be at heightened risk for substance use and abuse, depression, stress, social isolation, and loneliness. They also demonstrate significantly lower life satisfaction and well-being. Cumulatively, this confluence of factors has meant a continuing downward intergenerational spiral.

Clearly, because of the complexity of the topic and the cumulative consequences of inattention to this population, a concerted sustained effort is required to address the problems of the forgotten generation. The efforts represented in this book and in the President's Committee on Mental Retardation (PCMR) Report to the President (1969) are initial steps in trying to elucidate the issues that confront adults with mild cognitive limitations. With implementation of the recommendations, perhaps the futures of subsequent generations of individuals with mild cognitive limitations can be more certain and satisfactory.

Responding to the Challenges

A number of challenges for individuals with mild cognitive limitations have been identified in this book: community living; income security, employment, and career development; housing; health and physical well-being; family, psychological, and spiritual well-being; and citizenship and civil rights. Although these topics are seemingly disparate and distinct, in reality all of the areas are intertwined and vary slightly over the life span of individuals with mild cognitive limitations. Although researchers, funding agencies, and, most of all, politicians enjoy single issues addressed single-mindedly with a short-term horizon, issues facing individuals with mild cognitive limitations, similar to those facing everyone in poverty, are complex. However, all of the issues are addressable. These issues beg for strategies that address the realities faced by individuals with mild cognitive limitations at different periods in their lives. Thus, coordinated, multi-pronged, and sustained research; professional training; service; and self-advocacy efforts are required while individuals with mild cognitive limitations are in school, during their transition from school, during their work lives, while they are caring for their families, and as they get older.

Guiding Principles

The mental retardation/developmental disabilities field has been known for its development of principles to guide the efforts involving individuals with mental retardation or other developmental disabilities. This field also is known for the application of these principles to a large extent. Similar principles, including cultivating respect for the individuals and their cultures; emphasizing individual autonomy, choice, and self-determination; providing nonvaluative individually determined needs-based supports; increasing accessibility to activities that all people enjoy; and advocating for fairness in civil and criminal law have guided the current effort.

How Can the Community Lives of Individuals with Mild Cognitive Limitations Be Enhanced?

Independence, individual choice, needs-based supports, and self-actualization, among other things, are critical concepts for individuals with mild cognitive limitations. However, as skills increase, as labels or criteria change, or as certain supports become less necessary, one of the chief dilemmas faced by individuals with mild cognitive limitations is whether to identify oneself as having a disability. Disability service providers face a similar problem: Should they encourage the diagnosis of a disability for an individual as a means of obtaining financial or other disability-related supports? Because generic community service systems are largely unfamiliar with the needs of individuals with mild cognitive limitations, little opportunity exists for continuity between systems. However, continuity can be established in a number of ways to enhance the community lives of people with mild cognitive limitations. Although research is needed in all areas of living for individuals with mild cognitive limitations, an overriding need exists for the identification of the things they need at certain times of their lives, the identification of services with which they come in contact during those times, and a judgment regarding how useful those services were to the individual and his or her family. A determination of which methods were used in seeking and obtaining services by individuals also should be made. Once gathered, this information could provide the basis for the development of continuity of services in all sectors that are needs-based and not strictly related to categorical criteria. Consequently, individuals would not fall through a variety of service sector cracks.

Based on information that is currently available, a number of recommendations can be made to enhance the community lives of individuals with mild cognitive limitations. First, information about this population must be effectively disseminated to specific agencies within the federal, state, and local governments, to private foundations, to disability groups, and to organizational groups representing private service sectors including managed care. Professional organizations such as the American Psychological Association and the American Association on Mental Retardation also should be integrally involved. Accrediting groups such as the Joint Council on Accreditation of Healthcare Organizations also must incorporate criteria related to this population.

Second, by working with schools, long-term care organizations, families, and health services, linkages between service sectors must be established whereby integration of services can occur for all people. Technical assistance should be provided to these coalitions or linkages in order to collect data on an ongoing basis regarding who is or is not served. Foundations can play a significant catalytic role. As part of this effort, service brokers can be organized to assist individuals with mild cognitive limitations in obtaining services.

Third, both the information that is available for self-use in all community sectors and the manner in which the information is presented must become more user-friendly. Most often, materials available in the community are written at an advanced level of writing that is only understood by individuals who do not have disabilities. This oversight of the needs of individuals with disabilities occludes them from receiving much needed and highly important information.

Fourth, and probably most important, individuals with mild cognitive limitations must learn how to identify their own learning needs, including the types of adaptations that seem to work best for them. With that information, individuals can provide service providers with direction regarding how to best meet the individuals' needs.

How Can Employment and Economic Security of Individuals with Mild Cognitive Limitations Be Achieved?

Evidence suggests that the needs of students with mild cognitive limitations who do not qualify for special education are largely not addressed while the students are in school. This lack of attention causes significant impediments for the students as they leave school, particularly if they exit school before graduating. The development of models of school-to-work transition programs for students with mild cognitive limitations that consider the continuities of learning abilities are clearly needed. These programs should be developed in partnership with businesses and industries while including students with mild cognitive limitations in the existing School-to-Work Opportunities Act of 1994 (PL 103-239), the Department of Labor's Employment and Training Administration Programs, and the Department of Education's Office of Vocational Education. Generic and specialized services also should participate to help ensure lifelong access to needed community supports. A system of supports for employers, including training regarding employment adaptation methods that maximize accessibility including informational and technological accessibility, also should be developed. An ongoing effort for continuous feedback between school and work and between work and school must be established. To facilitate employment opportunities, the current Work Opportunities Tax Credit should be expanded so that economic incentives to employers are equivalent to those provided by the Welfare-to-Work Tax Credit. To ensure continuity, programs should be established so that individuals can remain eligible for health care and related benefits should they lose their jobs.

How Can Individuals with Mild Cognitive Limitations Be Assured of Adequate and Stable Housing?

Quality and stability of housing for all people who live in poverty continue to be major concerns in the United States. Individuals with mild cognitive limitations, particularly those who have families, are especially vulnerable to the lack of suitable housing, not only because of housing unavailability but also because of the lack of suitable employment opportunities. Inadequate educational preparation also limits the abilities of these individuals to utilize existing supports to obtain housing and to sustain their lives. For families, the absence of housing alternatives tied to parenting support availability coupled with restrictive residency codes increases the probability of family disintegration. A number of strategies are recommended. First, as in all avenues of life, the individual often is his or her own best and most effective lifelong advocate. Therefore, he or she must be made aware of housing issues as part of his or her transition from school. School, too, can be seen as a resource for students who exited early. To achieve this, however, the role of the school must expand in such a way as to operate as a resource center for previous and current students. Second, existing and planned housing initiatives should be informed regarding the needs of individuals with mild cognitive limitations, especially those individuals with families. Housing advocate groups should be apprised of ways in which they can assist these individuals. As part of this effort, advocacy groups as well as the individuals themselves should influence how housing funds are spent. One way in which this can be accomplished is through participation in the development of the 5-year consolidated plans that cities and counties receiving federal housing assistance must develop and update annually. Families who no longer qualify for disability services also must be assisted in making their needs known to agencies that receive federal housing assistance. Further, if they come into contact with child protective services, these families must reiterate their housing needs and seek assistance from child protective service contract agencies.

Citizenship and Civil Rights

In the absence of effective education and supports enabling them to live relatively balanced lives, it is apparent that individuals with mild cognitive limitations have little opportunity to fully participate as citizens and, in effect, have been disenfranchised. In addition, individuals with mild cognitive limitations are at high risk for coming into contact with legal or other authorities. Unfortunately, once they are involved with the authorities, it appears that individuals with mild cognitive limitations have few of the skills necessary to defend or to extricate themselves from this involvement; therefore, difficulties with authorities may continue throughout their lives. Parents who have mild cognitive limitations are especially at increased risk for being involved with the legal authorities due to the stigma held by society that they are innately incapable of being good parents.

A number of steps can be taken to assist individuals with mild cognitive limitations. First, individuals must be educated regarding what it means to be involved with legal and other authorities and regarding what strategies they can use if they do become involved. This education must be part of citizenship education while in school. Legal aid groups must be part of this effort. Second, information regarding the needs of individuals with mild cognitive limitations must be disseminated, and judges, attorneys, and civil rights advocates must be provided with training. Third, a special effort must be made to address the civil rights of parents with mild cognitive limitations. The Department of Justice should aggressively examine cases on parental rights under Title II of the Americans with Disabilities Act of 1990 (PL 101-336). Further, established models of parenting education and support provision should be disseminated and evaluated in a systematic manner. Potentially, web-based instruction and dissemination may be used. It has been demonstrated that lowered educational and communication skills and inexperience with medical, legal, contractual, and other complicated terminology coupled with the exigencies of poor living circumstances place individuals with mild cognitive limitations at risk for not understanding what they consent to. Unfortunately, these individuals may be unable to refuse, dissent, or withdraw their consent once it has been given. Conversely, sufficient empirical evidence exists to show that presentation of information in easier to understand, larger, and uncluttered print with sufficient time and supports for processing and assimilation significantly increases understanding as well as the effectiveness of decision making. In addition, the use of clear uncluttered illustrations adds to the improvement of understanding. Further, this understanding and decision making can be maintained over time. Based on this evidence, a fourth recommendation is the development of a concerted effort to ensure that various documents and the processes by which they are presented should follow the proven strategies. This effort could be headed by the National Institute on Disability and Rehabilitation Research.

Family Life

Individuals with mild cognitive limitations who have their own families continue to be given short shrift. Although several researchers as well as a number of service providers struggle to increase our research knowledge base and to develop models of and actually provide family assistance, passive resistance to any systematic approach to addressing needs of families with cognitive limitations continues. Anecdotal evidence illustrates, for example, that among parents who are first reported for suspected child maltreatment, between 30% and 70% display learning difficulties associated with mental retardation or learning disabilities. Usually, these learning difficulties had been identified while the parent was in school. Invariably, reported parents display limited communication skills, including low reading abilities, and limited self-health care knowledge and skills and are involved in complicated and sometimes threatening relationships. They also may have co-morbid psychological disorders. It is unknown what portion of those individuals who are reported lose their children either temporarily or permanently; what is known, however, is that the parenting education to which all families are referred upon being accused of child maltreatment invariably follows the typical "cookie cutter" approach in which one type of service is meant to fit all. Invariably, families with mild cognitive limitations fail. Despite the need, initiatives related to the prevention of child maltreatment have not included parents with mild cognitive limitations.

There are obvious needs for a systematic approach to family life when a parent has functional needs associated with mild cognitive limitations. First, dissemination of information to federal, state, and local government as well as other agencies and organizations about the needs of parents with mild cognitive limitations and their families is needed. This information must address issues of housing, health care, and child protection. Second, self-health care, injury prevention, and well-being education should be provided to all students while they are in school. These efforts should focus particularly on children who are living in poverty who may not have access to other avenues by which they might obtain such information. Preparatory education for self-health care will at least provide youngsters who become parents with a foundation upon which to build child care skills. Third, specially constituted task forces of private and public groups need to be assembled to address the needs of individuals with mild cognitive limitations and their children. Further, we need to know what happens to children with mild cognitive limitations as they get older. And later, what happens to families as parents age?

Psychological Health and Well-Being

Individuals with mild cognitive limitations are affected by the same psychological difficulties that affect individuals without cognitive disabilities. However, in their attempt to foster their own psychological health and well-being, those with cognitive disabilities experience similar, yet greater, difficulties than individuals without disabilities. Individuals with mild cognitive limitations are faced with time constraints and are forced to decipher complex, often contradictory, media or other messages. This daily compounding of difficulties faced by individuals with mild cognitive limitations leads to frustrations that build and lead to more serious internal anxiety and psychological complications. Some individuals with cognitive limitations seek assistance. Invariably, however, when a person with mild cognitive limitations demonstrates symptoms that are associated with a psychological disorder, these symptoms go unrecognized or are recognized only when they become severe. Often, these psychological impairments are untreated or undertreated. Further, because of the unavailability of assistance to foster enjoyment of life, satisfaction with attainments, and psychological wellness and because of limited educational backgrounds, which severely limit the self-development and fostering of positive mental health, individuals with mild cognitive limitations may suffer from lifelong and, sadly, often preventable mental disorders.

This problem continues despite clear needs. Specifically, organizations involved in the provision of mental health services must be informed of the mental health needs of individuals with mild cognitive limitations during different age periods. In particular, private mental health maintenance organizations must share in assuming responsibility in the development of continuity of care models for this population. Culturally relevant faith-based organizations also should participate. Research also is required to identify which mental health and well-being needs exist and which treatments appear to be the most beneficial. Based upon the results of this effort, successful preventive and palliative models can be developed across the life span.

Health and Physical Well-Being

As health care systems continue to evolve, the health and physical well-being of all people in poverty continues to be fragmented and minimal in nature. Individuals who have any type of impairment, including mild cognitive limitations, and their families have been, and continue to be, disproportionately adversely affected during this evolution. Although the precise extent of the adverse health consequences are unknown, they appear to be substantial and intergenerational. It appears that instead of usual care, individuals with mild cognitive limitations are more likely to utilize emergent or public health or to go untreated. Although Healthy People 2010 and its predecessor, Healthy People 2000, have emphasized increased self-health care responsibilities, no recommended strategies are provided by which individuals who are unable to utilize available resources can develop these skills. Therefore, in the absence of effective and basic self-health care preparatory knowledge while in school, in a workplace, or in a health care system, individuals with mild cognitive limitations have difficulty conceptualizing the relationship between external symptomatology and internal physiological disease processes. They also lack access to preventive health services. Also, as a result of lowered reading and other communication skills, individuals with cognitive limitations are unable to use available self-care resources. However, it is known that matching disease and medical treatment regimen information to the learning needs of individuals, perhaps coupled with suitable supports, dramatically improves their understanding, compliance, and health outcomes. Logically, health care costs would be significantly lowered as well. Additional strategies such as probing, questioning, and role playing add to these improvements. In injury prevention, for example, the use of illustrations and the actual provision of home safety devices are inexpensive but effective ways to prevent infant and child injury — the number one killer of children. In addition, nonfatal injuries are the primary cause of hospitalization and medical treatment of infants younger than the age of 1 year. The consequences of single injuries can be long-lasting. Effective strategies should be disseminated to training programs, health care delivery systems, and "on-the-ground" direct health care providers. Further, there are obvious research needs to identify the actual health and economic consequences of the absence of a usual care system to individuals with mild cognitive limitations.

Other Needs: Issues Related to Defining the Population

A method of describing a particular population must be found for ease of communication. Terms such as hidden majority or invisible disability have been used to describe individuals with mild cognitive limitations who do not appear to have a disability. In part, this lack of visibility of a disability (or perhaps lack of seeing or knowing or recognizing on the part of society) has contributed to the difficulties that adults with mild cognitive limitations now face. For the current effort and for the time being, the term mild cognitive limitation was chosen to describe a substantial number of people whose learning, information processing, and other cognitive processes are such that some adaptations of mainstream practices may be required to help them succeed. These adaptations may be needed in some areas of living but not in all, and the need for such adaptations may vary over a life span. Therefore, mild cognitive limitations is a term used to describe functional learning needs. Other terms also could be used, such as parenting learning needs, financial learning needs, vocational learning needs, health care learning needs, housing learning needs, legal learning needs, and so on. The important factor, however, is to recognize that learning is multi-faceted and takes place on a continuum. We also struggled with the use of the term mild because the comparison is only to people with more severe disabilities, and mild does not accurately capture the serious learning and functioning disadvantages these individuals face.

Although it is tempting to return to the use of terms such as mild mental retardation or even borderline mental retardation, these terms appear to have lost their usefulness because individuals to whom they have been applied reject them. In addition, because of their categorical, either/or, all-or-none nature, the use of these categories does not mirror the complexities of life. People can fall outside of any criterion but still have similar needs for service and have those services denied. Therefore, although there is a need to examine nomenclature, this examination must not divert attention from the people involved.

References

Americans with Disabilities Act (ADA) of 1990, PL 101-336, 42 U.S.C. §§ 201 et seq.

School-to-Work Opportunities Act of 1994, PL 103-239, 20 U.S.C. §§ 6101 et seq.