Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

People with intellectual or develop­mental disabilities (IDD) encounter many factors across their lifespan that increase their risk for mental health challenges. Restricted opportunities, negative labels, rejection, exclusion, and other negative experiences can lead to feelings of in­feriority and loneliness, as well as poor self-concept and low self-esteem. Conse­quently, research shows that people with IDD are more vulnerable to stress, anxiety, and other mental health problems than people who do not have IDD. According to NADD, an association for persons with intellectual/developmental disabilities and mental health needs, 30-35% of persons with IDD also have a psychiatric disor­der (NADD, 2016). These challenges can interfere in several areas of the individual’s life, including social relationships, finding and keeping work, their home environ­ment, and participating in recreational activities. Lack of coping skills and insuf­ficient communication skills can also make life difficult for people with IDD and contribute further to stress and anxiety. Recognizing and supporting mental health needs in individuals with IDD is essential to providing quality supports and address­ing wellness.

Mental Health Strategies for Specific Needs

Services and practices that are available for people with mental illness also should be offered to people with IDD, recognizing how an overlap in strategy can be applied, with emphasis on modifying to the specific needs of an individual. These include strategies that can be incorporated in both formal plans and everyday supports.

Behaviors viewed as problematic may be a sign of a mental health disorder, or can be indicative that the individual is experi­encing discomfort or dissatisfaction with his or her surroundings. However, the interventions used to address these issues can sometimes be more isolating and anxiety-provoking for the person, rather than therapeutic. For example, if some­one experiences challenging or aggressive behaviors in the community, they are sometimes excluded from community involvement. Since tension or anxiety can serve as contributing events for problem behavior, creating a supportive, calming environment that addresses specific trig­gers is key to addressing wellness and to prevent challenging behavior. Considering what tools can support the person when he or she encounters a potential trigger or discomfort is a more positive way to encourage community involvement.

For some people with IDD, lack of oppor­tunity to engage in meaningful experiences can lead to anxiety based in unfamiliarity with events common to the general pop­ulation. For example, meeting new people or trying a new hobby can be a chance to try something new, but this can be stressful for someone with IDD. Provide a person with IDD more information about unfamiliar situations. For some, this may include a social story about what to expect from a setting or interaction, and a clear description of the appropriate behavior to reach a decided outcome. Other individ­uals may benefit from teaching on inter­personal relationships and the social skills required to interact with others. 

People with IDD are less likely to report having friends, significantly more likely to report feeling lonely, and also identify developing meaningful relationships as difficult (NASDDDS and HSRI, 2014, 2012). If we consider that interactions that can potentially lead to friendships can be stressful, we realize that mental health challenges can be both a cause and an outcome of lack of meaningful relationships and social support. It is essential to support people in ways in which they can cultivate relationships. This can be accomplished at school, at work, in the community, at recreational programs, as well as in therapy. Friendships are a significant source of mental wellness in the general population.

Promoting choice about the types of activ­ities in which people with IDD partici­pate has been shown to decrease anxiety and increase interest in said activities (NASDDDS and HSRI, 2014, 2012).

Providing individuals with choice and control over their lives has been central to person-centered planning and self-deter­mination. Empowerment helps individuals overcome powerlessness, recognize capac­ity, and gain control. This is of particular importance in the lives of people with IDD, who often do not play an active role in their own wellness.

Using Wellness Strategies

Promoting relaxation can help an indi­vidual self-manage stress, tension, worry, anger, discomfort or other feelings that can interfere with enjoying quality of life. Relaxation strategies are also effective in distracting the person from the cause of the potential anxiety and focusing him or her on an alternative activity or behavior. For example, if someone is very stressed about being in an elevator, he or she can participate in a relaxation exercise involv­ing a combination of deep breathing and counting while closing his or her eyes and visualizing a calming setting, for the duration of the elevator ride. The key to successful implementation of relaxation exercises is practicing with the person when not in the presence of the stressor/stressful environment and providing prompts as needed during rehearsal. Deep breathing for individuals who require more structure can be encouraged by using balloons, bubbles, party favors, and other instruments. Additionally, everyday activities such as baking bread and gar­dening will stimulate muscle involvement, resulting in an analogous effect seen in the more methodical technique, Progressive Muscle Relaxation. Sometimes knowing the person’s interests and being creative alongside him or her is the best strategy to help through stressful situations as well as build enduring coping skills.

A more expanded visualization strategy is Guided Imagery. By using words and/or music, the person is invited to create a positive image of a setting or scenario in order to generate a calming effect. During this exercise, the person is directed to focus on an image in his or her mind while given a set of instructions to reach a therapeutic goal. This practice can aid in relaxation, distraction from a stressor, potential de-escalation during behavioral crisis, and have an overall improved effect on the person’s state of mind while he or she is disoriented or uncomfortable.

Supportive communication is another therapeutic mental wellness strategy to ensure positive interactions. People need to be heard and understood. Choosing the right words and maintaining a supportive tone of voice is important. Provide an opportunity for reflection through active listening and show the person you under­stand. A verbal strategy called Validation helps to communicate to others that we are interested and supportive. Validation is particularly helpful with disoriented people, those suffering from disordered thinking (personality disorder, psychosis), traumatic brain injury, or those experienc­ing escalating behaviors. When we validate individuals with IDD, it’s important to remember that the person is grounded in his or her feelings and use those feelings to guide your responses. If problem solving or further intervention may be needed, distracting the person to a less stressful topic and promoting a calming response first will be more constructive. Validate the feelings and use the feelings to guide them towards more useful and calming activities.

When most of us think about mental health intervention, we think of speaking to a therapist. Therapy can be individual or group. Many forms of traditional therapy rely on advanced verbal skills, but may not be within the skill set of some people with IDD. Therapy can be adapted to meet the learning profile of people with different ability levels, however, and can be very ef­fective. Common adaptations can include use of concrete instruction or providing an increased number of examples. For persons who have trouble remembering past events, frequent reminders may be helpful, as may be use of pictures or other visual aids. Helping a person develop self-awareness about his or her feelings and identify ways to respond to those feelings is a common goal of therapy, as well as a valuable skill in approaching stress that inhibits wellness.

Conclusion

Persons with IDD are vulnerable to mental health challenges as well as a lack of mental wellness opportunities. In recent years, there has been a much greater level of awareness around these concerns, and a wealth of interventions have been iden­tified. In this pursuit, we should always be aware of how the general population promotes mental wellness, and adapt as necessary for persons with IDD, focusing on building skills and meeting the learning style of the person. These considerations should always be foremost as we plan and arrange for supports and include people in the selection of what works best for them.