David Laman, Ph.D.
With the increased attention and research addressing mental health aspects of developmental disabilities over the past two decades, our knowledge of mental health problems has grown tremendously. We have made significant gains in our ability to effectively identify, diagnose, and treat mental health disorders in persons with developmental disabilities, although doing so significantly challenges our service delivery systems. Despite our recent gains, persons with developmental disabilities continue to be more vulnerable to mental health problems than is the general population (Eaton & Menolascino, 1982; Nezu, Nezu, & Gillis-Weiss, 1992).
As our knowledge continues to grow, we are positioned to help families and caregivers explore ways in which they can promote mental health in individuals with developmental disabilities. The goal is to provide families and caregivers with directions, guidelines, and techniques that will help enhance emotional well being and adjustment.
The increased risk for developing mental health disorders experienced by persons with developmental disabilities is due to a number of factors, including developmental, biological, genetic, neurological, and environmental factors (Reiss, 1994). Risk factors that fall in the biological, genetic, and neurological areas are not likely to be significantly impacted by interventions from families or care givers, and are typically addressed through medical intervention, but parents and caregivers probably should be able to have some impact on risk factors associated with developmental and environmental factors. Environmental factors such as segregation, stigmatization, restricted opportunities, rejection, social disruption, victimization, infantilization, and poor social support have been reported to be common in the lives of persons with developmental disabilities (Reiss & Benson, 1984), and suggest problem areas that need to be addressed in order to promote emotional health and adjustment. Developmental factors that may be targets for intervention include communication, coping skills, social skills, and self-awareness.
Promoting mental health
Given the combination of internal and external risk factors, it sometimes seems unrealistic to expect someone with a developmental disability to have positive mental health. If one has worked in this field for any length of time, one has to have asked Could I live happily under these conditionswith so few real opportunities, with so little choice, with being viewed as less than a whole person, with not really being accepted as part of society? Many people with developmental disabilities do live happily, but we have learned that many dont. We need to begin to increase our efforts to promote positive mental health for both children and adults who have developmental disabilities. Ultimately, these efforts will require changes in societys perceptions and treatment of persons with developmental disabilities. Families and care givers will need to make promoting emotional health, happiness, and quality of life a top priority since these factors are most apt to impact those that they care for. Three areas that are viewed as important in promoting mental health include promoting a positive sense of self, enhancing the environment to improve understanding and adjustment, and teaching skills that increase ability to obtain needed resources from the environment.
Promoting a positive sense of self
In order to increase the chances for persons with developmental disabilities to have good mental health, we will need to work to reshape the thinking that contributes to negative social conditions and permeates our society. Following are some concepts basic to mental health for all people, but these present even more significant challenges to the mental health of people with developmental disabilities:
Everyone is born everything they need to be. Any parent can easily identify with the best illustration of this concept. When holding ones newborn child for the first time, one is overwhelmed by feelings for that child. These feelings are more unconditional than any feelings one will ever experience. The child is perfect, yet this child has not yet done anything. We know nothing about what abilities or accomplishments will be. The feeling is pure love for the child as he or she is right now. There would be little room for the negative social conditions experienced by persons with developmental disabilities if society were able to adopt the belief that everyone is born everything they need to be, and that each persons value comes simply from who they are.
In order to promote emotional well being, parents and caregivers to persons with developmental disabilities need to promote this idea of unconditional value, through teaching and relating in ways consistent with these beliefs. The major challenge is that we cannot truly promote the belief if we dont believe it ourselves. Even the most committed parents, care givers, and professionals struggle to not overly focus on deficits, on whats wrong, and what needs to be changed. We evaluate the deficits over and over and constantly set goals to help them catch up, serving as constant reminders to them that they are coming up short in comparison to others. This is not to say that understanding the nature of problems and planning for change are not necessary and desirable, but all too often our overemphasis on these sends a clear and repetitive message that the person is not good enough as they are. We need to continually monitor our interactions with persons with developmental disabilities by asking ourselves How will this interaction show that I value this person?
The concept of one being born all one needs to be has implications for how we help people with disabilities view themselves. Any counselor who has worked with people with developmental disabilities has frequently heard the line He needs to learn to accept his disabilities. This often becomes a goal they are supposed to work on. This approach to dealing with a disability has potential costs on mental health. What people with disabilities need to learn is to accept who they are as a whole person, including their unique abilities and what we call their disabilities. The distinction is an important one. One involves positive feelings about the person one is, while the other focuses on accepting what one is not.
We need to change our view of abled and disabled. Our good intentions to identify a group of people who need more help than usual has unfortunately and unintentionally resulted in inaccurate and unhealthy views of people with developmental disabilities. Our views of abled and disabled have become unrealistically polarized and created an us verses them attitude. Somewhere along the line, we have come to think of them as more different from us than similar to us. We de-emphasize the things we have in common from being human, and magnify differences that are more fabricated than real. This is well demonstrated in our view of our knowledge and their knowledge. If a person with a developmental disability has one- half as much knowledge as we who are in the average range, we view ourselves as being at 100% and them at 50%, a very significant difference. In reality, with every thing there is to know and understand about the world, the universe, God, etc., none of really knows much at all. The difference between knowing very little and half of very little is negligible and makes us more similar than different.
It is imperative that we acknowledge the artificial nature of differences between groups of people we think of as abled and disabled. We need to increase our awareness that all people are unique, with unique abilities and talents, that we all have areas of weakness, and that all people have special needs. It is necessary and even helpful to recognize differences, but we need to not allow these to be the basis for a persons value.
It is better to be than to become. In our society there is a lot of status in what one does for a living and who they have become. Consequently, we spend an enormous amount of energy, time, and focus trying to become something. There is nothing inherently wrong with becoming something: however, once again we overemphasize and over interprets this. While this way of thinking has a high cost for the mental health of all people, it is especially costly for people with disabilities because of the limited opportunities and choices available to them. Again the message to them is that who they are is not good enough.
In the words of Abraham Joshua Heschel, Just to be is a blessing, just to live is holy. If we want to promote mental health for persons with developmental disabilities, we must teach them that just being themselves and sharing that with other people is important. We need to allow ourselves to be enriched by experiencing them just being, and allow them to be enriched by experiencing us just being.
Life is now. We live in a society that lives unconsciously with the mottoes Ill be happy when... and Id be happy if only... This thinking can take us right through life. Kids will be happy if they can just get the newest video game system, teenagers will be happy when they graduate from school, the adult when he/she gets this job, that dream house, this raise or promotion, and ultimately when he/she can retire. All too often in retirement, the older adult reminisces about the good old days, thinking theyd be happy if only... This way of thinking prevents people from living and being happy in the moment.
Unfortunately, we do little to help persons with developmental disabilities learn to be happy now, in the situation they are in now. More unfortunately, we inadvertently contribute to Ill be happy when... thinking by our constant focus on goals for the next year. While helpful in many ways, the act of sitting down each year with a group of people to discuss what one is going to work on, and where one is going in life in objective and measurable terms, continually reinforces the idea that one will be better off When... and If only... It does little to help one appreciate where one is right now.
People need to be connected - to themselves, to others, to God, to nature. While distraction is a good technique to de-escalate certain behavioral situations, it is not good as a way of life. With the advances in technology, it is easy for people to go through their days without really connecting to anyone. Due to advances in communication technology, we find ourselves communicating more with machines than people. Television provides us with hours of distraction from the real world each day, while our new state-of-the-art, self-ordering refrigerators save us from having to actually speak to another person to obtain the most basic necessities of life.
Being disconnected from self and others can have negative effects on emotional well being for all people. People with developmental disabilities are at even greater risk. Because of developmental factors such as having less developed skills for self-reflection and self-awareness, they are less likely to be connected to themselves. Due to inadequate communication and social skills, and to segregation, rejection, social disruption, and stigmatization, persons with developmental disabilities are less likely to be connected to others. Family members and caretakers are often more focused on taking care of them rather than really interacting with them. As a result, one of the most basic needs, the need for human intimacy, is less available to people with developmental disabilities. Families and care givers are in a great position to promote mental health through teaching people with developmental disabilities how to be connected to themselves, as well as to make it a top priority to really connect and have meaningful and valuing interactions with them.
Everyone needs to have control in his or her life. Developing a sense of control in ones life is a basic developmental requirement and is also imperative for emotional well being. There are many theoretical reasons and growing bodies of research showing an association between personal control and mental health (Yurkovich, Buehler, & Smyer, 1997). Obtaining this control presents a major challenge for persons with developmental disabilities. Historically, we have taken much more control than is necessary, sometimes to the point of human indecency. Most adults with developmental disabilities continue to have decisions made for them regarding such things as where and with whom they live, where they work, what they wear, what and how much they eat, and what time they go to bed.
The introduction of person-centered planning and self-determination have been very necessary and positive steps to provide persons with developmental disabilities with more control in their lives. However, issues of how and when to take control, and how to balance safety factors continue to make implementing them very difficult. The result often is policies that make little sense and place unnecessary restrictions on individuals. For example, we typically intervene if a person with a developmental disability does not wear a warm enough coat, even though there is no apparent link between how one dresses and becoming ill. At the same time, we do not prevent people with developmental disabilities from smoking cigarettes despite the strong connection to lung cancer. Many people with diabetes do not control their diets well, yet if the person has a developmental disability, we take control of their diet. Staff members who are more overweight and yet continue to eat whatever and whenever they want put many individuals with developmental disabilities on restricted-calorie diets.
Issues of control present difficult and complicated challenges to families, care givers, professionals, administrators, and policy makers. We need to continue to struggle actively and evaluate carefully to ensure that people with developmental disabilities have as much opportunity for self-determination as possible. We need to be aware in our efforts to find a balance that historically we have always erred on the side of taking too much control rather than too little control. Above all, we need to be aware that the decisions we make regarding control have a major impact on mental health and quality of life for people with developmental disabilities.
Enhancing the environment to improve understanding and adjustment
There are a number of things that family and caregivers can do to enhance the environment in order to maximize opportunities for persons with developmental disabilities to adjust and cope effectively. Several of these are discussed below.
Social support. There have been a number of studies documenting the inadequate social support available to persons with developmental disabilities (Krauss, Seltzer, & Goodman, 1992; Williams & Asher, 1992) There is also evidence that inadequate social support is associated with mental health problems (Laman & Reiss, 1987; McKinney & Peterson, 1987; Reiss & Benson, 1985). While some of the problem lies with developmental factors such as poor social skills, there is also a major contribution from environmental factors controlled by others. For example, most decisions regarding the residential placement of an adult with developmental disabilities are not made by the individual, resulting in that people having little say in regard to where or who they live with. Frequent changes in placements are common, further disrupting the development of social support networks. Families are often encouraged to restrict contact in order to promote independence. Additionally, day programs and work environments are often structured to promote production and discourage social interaction, while opportunities for recreation and leisure activities are limited.
Despite growing evidence of the role social support plays in psychological adjustment, rarely do goals and plans include efforts to maximize the development and availability of social support. Both families and caregivers need to structure the environment in ways to optimize social support. Families need to be involved as fully as possible in order to provide support through listening, discussing, respecting, loving, and just being there when needed. Care givers need to make interacting, sharing, and giving positive, focused attention as, or more, important than taking care of persons with developmental disabilities. Both families and caregivers need to allow relationships to be mutual rather than one-sided. Giving is great, but people with developmental disabilities have a lot to offer us if we are willing to receive it.
Prepare people for changes and challenges. Unfortunately, it is common practice to spring major life changes on people with developmental disabilities at the last minute, robbing them of the opportunity to adjust ahead of time. This is often an attempt to avoid behavioral problems beforehand, but typically results in increased adjustment problems following the change. We also do little to prepare them for developmental challenges such as school placement, transitions to work, and retirement that occur throughout their lives. Adjustment would likely be significantly enhanced if we were to be more proactive and actually discuss changes and challenges repeatedly over time, elicit more of their input, and make it a priority to have them express their feelings about what was going to happen.
Empowering people to have control. One of the major excuses for taking too much control is that people with developmental disabilities dont know how to exercise control. Beginning in childhood and continuing through adulthood, we need to structure the environment so that we have no more control than necessary. This includes providing them with and helping them understand choices and consequences. They need to be allowed to make mistakes and bad choices as long as the cost is not too high. Consequences need to be as natural as possible in order for them to learn how the world works, as opposed to learning how behavior modification works. We also need to help them learn to plan something that is typically done for them because it is easier and faster.
Maximize opportunities. People with developmental disabilities often do not know what opportunities are available or how to access them because of lack of experience. Families and caregivers need to help them evaluate their needs and wants, and to learn how to get them. Care needs to be given to keep the focus of independence building on important matters such as accessing resources, as opposed to performing domestic duties.
Enhancing hopes and dreams. All too often, the hopes and dreams of people with developmental disabilities are squashed because we dont think they are realistic. Hopes and dreams serve to motivate and brighten the views of the future for all people, and often are not realistic. Families and caregivers need to support hopes and dreams through listening, discussing, and encouraging. If hopes and dreams are not realistic, people with developmental disabilities can learn that the same way the rest of us do.
Teaching skills that increase ability to adjust and obtain needed resources
Additional requirements for mental health involve being able to obtain what one needs from the environment and being able to adjust to ones environment when changes occur. To do this effectively, one needs to possess and use certain skills. Building skills has long been a focus of education for people with developmental disabilities. However, many skills necessary for mental health are not taught to the degree they need to be, or for the length of time necessary to be effective.
Skills to better function in the environment can be taught in a number of ways. Schools teach many skills throughout childhood, but could expand the scope of teaching to include a wider range of skills necessary for effective adjustment. Parents have the opportunity to evaluate and teach skills on an individual basis. Caregivers in residential and day programs are able to teach skills individually during daily interactions or in-group settings with a more structured agenda. However skills are taught, it is imperative that what is being taught is constantly evaluated to ensure that the most important ones receive the most attention. It is not uncommon to see goals to build skills in making ones bed recur on plans year after year. It is uncommon to see that kind of attention given to teaching skills to help one understand, express, and manage ones feelings. Several skills thought to be important in promoting mental health are discussed below.
Social skills. Teaching social skills to children and adolescents is often a major focus of education. However, there is a major drop-off in efforts to teach social skills in adulthood, a time when they are most needed. This is unfortunate, given that poor social skills have been shown to be associated to challenging behaviors (Kopp, Baker, & Brown, 1992), low levels of social support (Laman & Reiss, 1987) and emotional difficulties (Benson, Reiss, Smith, & Laman, 1985).
Group situations are ideal for teaching social skills and a number of approaches that incorporate instruction, modeling, role-playing, feedback, and social reinforcement have been shown to be effective (Matson & Fee, 1991). Some programs have been developed to teach skills specific to a particular environment such as employment settings, where social difficulties typically present more of a threat to successful employment than do poor work skills (McClannahan & Krantz, 1990). Other models exist for developing day programs for persons with co-existing developmental disabilities and mental illness with a focus on building skills to increase support and adaptation (Fletcher, 1989).
With the well-documented association between poor social skills and emotional/behavioral problems and the existence of proven models and programs to effectively teach social skills, it is truly unfortunate that residential and day programs for adults with developmental disabilities provide so little teaching of these important skills. Enhancing training in this area would be a major step toward promoting mental health for people with developmental disabilities.
Coping skills. The ability to cope effectively with changes or problems that arise is crucial to positive mental health. People of all ages with developmental disabilities face more changes and challenges than the general population yet teaching skills for coping is rarely a priority. Again, research has demonstrated the effectiveness of training in areas such as problems solving, assertiveness training, and perspective-taking skills (Nezu, Nezu, & Arean, 1991). Cognitive-behavioral approaches utilizing techniques including self-monitoring, self-talk, and self-control have been adapted to address the needs of persons with developmental disabilities. Despite the availability of resources to assist in teaching coping skills, persons with developmental disabilities have very limited access to training that potentially could enhance emotional and behavioral functioning.
Feelings. Teaching persons with developmental disabilities how to recognize, understand, express, and manage feelings has received far too little attention. Lower self-awareness of emotions associated with developmental disabilities presents a major threat to mental health, especially in combination with the many external threats to emotional well being experienced by persons with developmental disabilities. Most of the attention that has been given to dealing with feelings has addressed the emotion of anger, not because anger is most challenging for persons with developmental disabilities, but because it is the most challenging for us. Nonetheless, anger problems can significantly impair functioning and restrict opportunities for a person. Benson (1992) developed a model anger management-training program. This program combines training in identification of feelings, relaxation training, self-instruction, and problem-solving skills to increase control over anger. Despite evidence of the therapeutic effects of this program, the vast majority of persons with developmental disabilities have never been provided with such training.
Even less attention has been given to other emotions. Depression is one of the more common disorders experienced by persons with developmental disabilities (Laman & Reiss, 1987: Matson, Barrett, & Helsel, 1988; Reynolds & Miller, 1985) and is also one of the more under-identified disorders. Many persons with developmental disabilities who suffer from depression have minimal understanding of what they are experiencing and even less ability to express or deal with the feelings. Unless these emotions are expressed behaviorally, staffs are also often unaware of the depression. Much more teaching is needed to help people with developmental disabilities understand feelings of sadness, irritability, hopelessness, and helplessness associated with depression.
Teaching of feelings can be taught through training programs such as the Anger Management Training program, but parents and caregivers can provide much more teaching. Teaching how to recognize, express, and manage feelings can be taught through the every day experiences of persons with developmental disabilities. This requires the parent or care giver to take the time to really listen, help the person recognize what he or she is feeling, put those feelings into words, and explore ways in which to cope with them. Many opportunities exist to teach about feelings due to the many negative social conditions experienced by persons with developmental disabilities. Unfortunately, many of these opportunities are lost because parents or care givers dont take the time, are uncomfortable dealing with feeling situations themselves, or do not have the training to be effective.
Enjoyment of life. We live in a society in which there are many opportunities for enjoyment. To take advantage of these opportunities, certain personal skills are necessary. First, one must know how to identify what one enjoys. Due to limited experience, persons with developmental disabilities often are unable to identify these. Second, a person must know how to express these wants and desires. People with developmental disabilities often have communication problems, limiting their ability to make their preferences known. Third, a person needs to know how to access these opportunities. These are skills often not taught to persons with developmental disabilities. All too often, people with developmental disabilities go along with the program, engaging in activities that others decide they should do. This was expressed well by a woman who had gone bowling once a week for over 20 years. When it was commented on that she must really like bowling, she commented I hate bowling but its the only time I can get out of this stupid group home. She, like many others, has no idea of how to pursue other interests or any belief that shed be allowed to if she knew how. The skills necessary to enjoy life need to be taught from an early age and parents and care givers need to make enjoyment of life a priority for people with developmental disabilities.
There has been much progress over the past 20 years in regard to mental health aspects of developmental disabilities. People with developmental disabilities have not only been shown to experience the same mental health disorders as the general population, but individual and environmental factors have been shown to make them even more vulnerable to these disorders.
Persons with developmental disabilities are also not so different with regard to having good mental health. Many of the same processes and factors are involved, but once again there are factors within both the individual and the environment that are complicating. Adequate attention has not been given to promoting mental health for persons with developmental disabilities. There are things that can be provided and taught to persons with developmental disabilities that will help them to be more happy, healthy, adjust better, and more effectively obtain what they need from an environment that often is less than friendly.
Perhaps the most important, and seemingly most difficult, thing we can do is to really love and accept persons with developmental disabilities for who they are. To do so, we have to examine the way we think, feel, and act. We need to own much of the responsibility for people with developmental disabilities not being fully accepted as part of society, not being truly integrated into our communities, and for continuing to have to live in retarding environments. We are headed in some good directions, but to really make a difference, we need a very high level of commitment to change. To be successful, we are going to have to listen to our hearts just as much as our heads.
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For further information contact:
David Laman, Ph.D.
Pine Rest Center for Developmental Disabilities
300 68th Street, SE, P.O. Box 165
Grand Rapids, MI 49501