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2004 Jordan Institute
for Families

Vol. 9, No. 2
January 2004

Basic Information about People with Cognitive Limitations

Because child welfare professionals see parents of varying levels of intellectual disability and because they often do not know a parent’s specific diagnosis, in this issue we use the broad term "cognitively limited" to refer to parents who have intellectual limitations. To appreciate the many different individuals who fall into this category, one must know something about the way intelligence is measured and classified.

In the U.S. today intelligence is commonly measured using a standardized IQ test, often the Weschler test. On these tests the average IQ score is 100, with 66% of the population scoring between 85 and 115 (Quinn, 2003), and 5.5% scoring below 75 (Welner, 2003). A person is considered to be mentally retarded if she has an IQ below 70–75, has significant limitations in her capacity to handle everyday tasks, and this condition manifested itself before she turned 18 (AAMR, 1992). Often individuals are identified as being at a specific point on the continuum of mental retardation, which spans from profound to mild.

Most people with retardation (89%) have mild mental retardation. Persons with moderate mental retardation account for only 7.5% of people with retardation, while those classified as severely or profoundly retarded account for 3.5% (Field & Sanchez, 1999). Thus, when child welfare workers encounter parents with developmental disabilities, chances are their cognitive limitations will be relatively mild.

 

Weschler Score
Classifications of Intelligence
IQ Score
Definition
>130
very superior
120–129
superior
110–119
high average
90–109
average
80–89
low average
70–79
borderline
55–69
mild retardation
40–54
moderate retardation
25–39
severe retardation
<24
profound retardation

It is important to note that a person with limits in intellectual functioning/low IQ who does not have limits in adaptive skill areas may not be diagnosed as having mental retardation (Arc, 1999). There is also a segment of the population who have IQs above 75 but who have intellectual limitations such that they need education and/or supports to succeed with complex tasks, such as child rearing (Tymchuk, Lakin, & Luckasson, 2001).

Causes
Cognitive limitations can be caused by genetic conditions, problems during pregnancy, problems at birth, problems after birth, and poverty (Arc, 1999). There are thousands of causes of cognitive limitations. Most are not genetic (Ingram, 1990).

Prevalence
Fujiura and Yamaki (1997) estimate that 1% of Americans have some form of mental retardation. If we accept this estimate and apply it to our state, we would expect 82,000 North Carolinians (children and adults) to be mentally retarded.

The actual number of people with mental retardation in North Carolina is not known. We do know, however, that in 2003 approximately 31,000 children and adults (or 0.38% of the population) were identified by North Carolina’s area mental health programs as receiving or requesting services for developmental disabilities. This figure does not reflect those who are cognitively limited but living in the community without formal support services (Realon, 2003).

We do not know how many people with cognitive limitations in the U.S. choose to have and raise children. “Most researchers agree, however, that their numbers are steadily increasing and will probably continue to do so as a result of changing attitudes towards sexuality, deinstitutionalization, decreased segregation, and wider opportunities for independent living and participation in the community” (Booth & Booth, 1993).

Strengths
Like everyone else, people with cognitive limitations possess a wide range of strengths and resources. These may include resilience, a sense of humor, musical and artistic talents, and jobs they love. Many have a strong network of supportive friends and helping professionals. Their families of origin are often a major source of strength for them (Llewellyn, et al., 1998). Virtually all parents with cognitive limitations feel tremendous love for their children and want them to grow up healthy and happy. They want to be good parents.

Although their IQs will not change, most people with cognitive limitations possess the ability to learn. Individuals in this population often continue to develop skills for managing day-to-day life throughout their lives (Edgerton, 2001). Formal instruction, tailored to their needs, has proven effective in helping people with cognitive limitations develop life skills, including parenting skills (Field & Sanchez, 1999).

Needs
Depending on the extent of their disabilities, people with cognitive limitations may be more likely than people in the general population to struggle with the following challenges:

  • Intellectual Tasks. Even people with mild cognitive limitations may have limited skills related to planning, decision-making, and coping. They may have difficulty understanding and using information in the formats commonly used in society. Many have problems understanding written and spoken language (Tymchuk, Lakin, & Luckasson, 2001). Illiteracy, school failure, dropout, and unemployment may result.

  • History of Personal Victimization. Studies have found that people with mental retardation are much more likely than the general population to have been sexually abused (Lumley et al., 1998) or abused or neglected as children (Tymchuk, 2001), to be the victims of domestic violence (Carlson, 1998), and to be taken advantage of by strangers, “friends,” and relatives.

  • Stigma and bias. See the following article, Our Shameful Past.

  • Poor Physical and Mental Health. In a review of various studies, Tymchuk, Lakin, and Luckasson (2001) found people with mild cognitive limitations to have an increased risk for lack of health care, poor health outcomes due to disease and violence, and mental illness (including stress, depression, loneliness, anxiety, and substance abuse). The need for glasses or hearing aids in mothers with mental retardation is more likely to go unidentified or unmet (Keltner & Tymchuk, 1992).

  • Fewer Social Supports. Though their need for social support is greater, individuals with cognitive limitations often lack the support they need to live stable, happy lives. Reasons include: the effects of institutionalization, inability to negotiate formal support systems, and relatives/friends worn out by the burden of support or who are themselves cognitively limited.

  • Poverty. Most people with cognitive limitations, including those with the mildest forms of retardation, are poor (Edgerton, 2001). This is not surprising, since all the other challenges faced by this population interfere with their ability to obtain an education, find and keep a job, and get ahead in society. Often cognitive limitations and poverty combine to bring families to the attention of DSS.

Involvement with Child Welfare
We do not know for certain what percentage of child welfare caseloads involve parents with cognitive limitations. Child Welfare Institute’s Danielle Nabinger says, “States don’t know about or track this population. Therefore we have no real sense of how much it affects child welfare work. The impact may be huge” (Nabinger, 2003).

Anecdotal reports suggest these parents make up a significant number of child welfare-involved families. Laura Quinn, with Wake County Human Services, estimates 20% of the parents involved with child welfare in her county have a diagnosis of mental retardation, and that another 5% to 10% are cognitively limited in some way (Quinn, 2003).

Parents in this population are usually involved with child welfare due to neglect or dependency (Field & Sanchez, 1999). Abuse, when it happens, usually occurs because parents have not yet developed the coping skills they need. Once involved, parents with cognitive limitations are more likely than other parents to lose their children to the child welfare system (Keltner & Tymchuk, 1992).

Practice Implications
Parents with cognitive limitations may represent a significant challenge for child welfare workers because they often have many complex needs. To serve these parents and their children effectively, social workers should make a commitment to learning as much as possible about working with this population. Some of what they will need to know, such as how to identify these parents and respond to them in a family-centered way, are addressed in this issue of Practice Notes.

References for this and other articles in this issue