Meeting the Mental Health Needs of Persons with Developmental Disabilities

by Tracey L. Kroeger, PhD

John is thirty-four years old and has a history of Mental Retardation, or significantly below average intellectual and independent daily functioning diagnosed between birth and 22 years of age. Six months ago, he began a new job. Shortly afterward, he moved into a new, much larger residence with five other adults with developmental disabilities. Following these two events, staff members at his residence noticed that John was having difficulty falling asleep, getting in arguments with peers, demonstrating yelling, name-calling and tearfulness. In addition, he was spending more time in his bedroom and his appetite had decreased. Concerned, residential staff took John to see a psychologist, who concluded that he was experiencing depression related to his adjustment to new living and working situations. Depression is considered a mental health problem because it interferes with the way a person thinks, feels and behaves.

People with developmental disabilities experience the full range of mental health disorders, and yet are among the most underserved populations by the mental health industry. Approximately one third of all people with developmental disabilities, or one to two million Americans, have a significant behavioral, mental, or personality disorder requiring mental health services. For a variety of reasons, individuals with a “dual diagnosis” - or both a developmental disability and a mental health problem - rarely receive the necessary mental health services. One of the most common reasons for neglect of mental health issues is the misunderstanding of inappropriate behaviors as part of the developmental disability, as opposed to a potential separate emotional or behavioral problem. This phenomenon is referred to as “diagnostic overshadowing.”

People with developmental disabilities are likely to develop mental health problems due to a number of social and developmental risk factors. They are exposed over a lifetime to negative social conditions. From a young age they are labeled as “different” and treated with prejudice. Often considered somehow less deserving of typical experiences, they are frequently expected to attend school, find employment and participate in social activities separate from peers without developmental disabilities. As adults, these individuals face restricted vocational and social opportunities, which can reduce quality of life. People with developmental disabilities also experience high rates of physical, emotional and sexual victimization. In addition, they often have inadequate social support networks and limited social skills (i.e., poor social problem-solving, assertiveness or leisure skills). Limited understanding and/or expression of language are also leading risk factors, as effective communication is important for social success. Lastly, frequent negative self-concept and expectations of failure may also make people with developmental disabilities vulnerable to the development of mental health problems.

Without treatment, emotional and behavioral problems for people with developmental disabilities have been found to continue over many years. Persistence of mental health problems can create additional complications for these individuals, such as decrease in independent living skills and problem-solving ability, suicide attempts, substance abuse, legal trouble and, in cases of severe behavioral problems, self-injury. Mental health problems greatly interfere with educational, vocational and social success and significantly reduce quality of life.

Providing mental health services to people with developmental disabilities, while necessary and critical, is complicated by many assessment and treatment challenges. Developmental issues such as low overall intellectual functioning may interfere with accurate self-report. People with developmental disabilities may under- or over-report important symptoms, deny symptoms in an effort to appear competent or misreport information because interview questions are not clearly understood. Most importantly, the way in which people with developmental disabilities demonstrate common mental health problems such as depression or anxiety may be very different compared to individuals in the general population. For instance, a child with autism may demonstrate extreme anxiety through an increase in repetitive behaviors (i.e., ordering rituals, preoccupation with a favorite topic, repetitive movements).

In order to provide effective services to those with developmental disabilities, clinicians have to familiarize themselves with “typical” developmental processes, as well as those for children, adolescents and adults with various developmental differences. Both inpatient and outpatient mental health services involve multiple goals, including the following:

• Individual Therapy for the person with a developmental disability in an effort to reduce ineffective or disruptive behaviors, build appropriate coping strategies and promote overall mental health
• Family Therapy to address interpersonal behaviors, communication styles and teaching approaches which encourage development of appropriate coping skills for the person with developmental disabilities
• Education for people with developmental disabilities and their caregivers/family members regarding the specific developmental disability, appropriate behavioral expectations and information processing style, and the function of certain “symptomatic” behaviors
• Collaboration with caregivers/family members regarding effective behavior management/parenting styles within the home
• Consultation with educators, employers, case managers, psychiatrists and primary care physicians to address disruptive behaviors and promote mental health for the person with a developmental disability
• Identification of additional support services within the community to help in the development of an adequate support network for the person with a developmental disability and associated caregivers/family members

Engaging people with developmental disabilities in either testing or psychotherapy requires creativity, flexibility and patience. Testing often must be accomplished over the course of several sessions, involve multiple breaks and rewards, and include input from various people in the client’s life. It is important to consider the client’s communication style, comfort level with the examiner and testing environment, and information processing strengths, as they may significantly affect the results of the evaluation. A combination of assessment measures is typically used, including those available for use with the general population, as well as those specifically designed for use with individuals with developmental disabilities. Often times, a variety of rating scales, test instruments and interactive processes are necessary to gain an accurate picture of the emotional, behavioral and cognitive functioning.

Individual therapy with people with developmental disabilities attempts to achieve the same outcome of psychotherapy with the general population: changes in thinking, feeling and behaving. Techniques range from the more traditional “talk therapy” to art, music or play therapy, none of which require speech. Exercises focus on:

• Identification of environmental stressors and related emotions
• Understanding of feelings and behaviors associated with depression, anxiety, grief, adjustment to changes, etc.
• Exploration and strengthening of relationships with family members, friends, co-workers, employers, educators
• Development of skills
  • social skills
  • relaxation skills
  • anger management skills
  • communication skills
  • problem-solving skills
  • goal-setting skills
  • self-monitoring skills
• Challenge and correction of irrational thought processes
• Identification of personal strengths and weaknesses
• Letter-writing
• Journaling
• List-making, scheduling, charting
• Role-playing
• Pretend playing with dolls, stuffed animals, legos, cars/trucks, puppets

Homework assignments to be completed during the time between therapy sessions assist with real-world practice and long-term success of learned skills and coping strategies.

In recognition of the need to provide quality mental health services for people with developmental disabilities, the Center for Developmental Disabilities (CDD) was created at Pine Rest Christian Mental Health Services in 1997. Since its initiation, the CDD has grown to include both in and outpatient clinical services with the expertise of multiple professionals including social workers, psychologists, psychiatrists and clinical pharmacologists. Inpatient services include thorough assessment of referral concerns, medication treatment, individual therapy, group therapy, and family therapy for children, adolescents and adults with developmental disabilities. Outpatient services at the Psychological Consultation Center on Pine Rest’s main campus have focused on the provision of testing and therapy services to children, adolescents and adults with various developmental disabilities. Outpatient services provide individual and family therapy, as well as testing intended to explore intellectual and independent daily functioning, neuropsychological functioning, mental health and behavioral status, and diagnostic clarification.