A Closer Look at the Dual Diagnosis of Developmental Disabilities and Mental Illness
To be vulnerable is not to be in jeopardy. To be vulnerable and isolated is the matrix of disaster. - Willard Gaylin, M.D.
A drienne (a single adult woman with Down syndrome, age 35) had been living in a supportive independent living setting with three roommates for four years. All the women that Adrienne lived with were close to her age, one had a developmental delay, and all were women with whom Adrienne had chosen to live and share a home with. Adrienne traveled by public transit daily without assistance to her job working at a local coffee house. Adrienne counted among her co-workers and regular customers many friends with whom she enjoyed going to movies and participating in a local community garden co-op. Adrienne experienced a terrible loss when her mother unexpectedly died. It was soon after this period that Adrienne’s friends and paid support people began to see significant and numerous changes in her behavior. Adrienne became listless and overly tired much of the time. She began missing work and showed little interest in activities and friends that had been so central to her life. She began to struggle with decision making-which made independent travel on public transit impossible. She became so confused and disoriented on one bus ride that the driver felt compelled to call the police when Adrienne seemed unable to answer the simplest of questions about her destination or her home address. Adrienne began to struggle with some basic self care skills, often forgetting or refusing to brush her teeth or comb her hair. She lost critical verbal skills and complained of vague pains in her abdomen and in her head.
Soon the service provider that supported Adrienne in her home and work life, felt her physical condition had become so deteriorated that an appointment with her general practitioner was scheduled. On the day of her appointment a paid support staff accompanied Adrienne to see her doctor.
Adrienne’s doctor asked Adrienne many questions, many of which Adrienne did not answer. Adrienne’s doctor asked Adrienne’s support staff many questions - many of which the staff did their best to answer. The doctor completed a thorough and sensitive physical exam of Adrienne. At the completion of the exam Adrienne’s support staff attempted to share with the doctor some of the significant events that had transpired in Adrienne’s life recently like the death of her mother. After listening patiently for a few minutes the doctor, with authority, waved his hand in order to end the discussion and pronounced that the reason that Adrienne was exhibiting the symptoms described was because she had Down syndrome and that “we often see a deterioration of skills and competencies in people like Adrienne as they reach advanced age.” At the age of 35, Adrienne’s doctor proceeded to prescribe a greater level of care and a more custodial approach to Adrienne’s support needs. He suggested her job had probably proven too difficult for her level of comprehension and was causing her undue frustration and concluded that the best course of action would be to significantly decrease the activity and business in Adrienne’s life to a schedule that would be more befitting someone with Down syndrome.
Stories like Adrienne’s have become all too familiar on the landscape of service provision and support to citizens with developmental disabilities across North America.
As a result of the chronic pathology of disability within the medical model construct it proves difficult for physicians to see citizens with developmental disabilities as complex, sometimes gifted, sometimes deeply wounded individuals, at risk for the same physiological and psychological implications of isolation and loneliness as the rest of the population. The existence of the label of developmental disability is considered to be all encompassing and is often perceived to be the single greatest determinant of predicable wellness in a person’s life.
“I’m a regular person, a regular person who has Down syndrome. I like music and film making - it’s not right to treat a person only like their disability” Justen Desouza Canadian Down Syndrome Society Advocacy Research Advisor
Indeed, if citizens who are among the most poor, most vulnerable, most isolated and most marginalized of Canadians, are at greater risk of depression, anxiety, and loneliness than the general population then the incidents of mental illness are understandably higher in the population of Canadians with developmental disabilities.
Historically citizens experiencing mental illness have been met with the most demoralizing forms of stigma and misinformation. Within the hierarchy of disability, the only condition more publically scorned and detested has been that of developmental disability. These two labels manifesting themselves in a single citizen, often proves to be a too onerous a social/political obstacle for many people to overcome.
“Psychiatric disorders are one of the main causes of secondary disability in the developmentally disabled. It has been estimated that 17% of persons with developmental delay have also experienced mood disorders. Studies have shown that 18% of developmentally delayed children have significant psychopathology and 59% of intellectually disabled adolescents have mental health or behavioral problems” (Dual Diagnosis Task Force of the Public Policy Committee of the Canadian Mental Health Association, Ontario Division, 1998).
Many primary care physicians are hesitant to provide a formal diagnosis of mental illness or psychiatric disorder because of the perception that a full investigation of existing socio-psychological conditions is impossible. The Family Physicians Guide (See Appendix A: Developmental Disabilities) offers a variety of guidelines. These guidelines include sensitivity to a variety of patient communication methods, creative therapeutic interventions, and consideration for a wide spectrum of learning styles in patients with mental illness.
Citizens with developmental disabilities can and do develop a full spectrum of psychological and psychiatric disorders. Contrary to popular belief - arbitrary IQ scores are not an accurate indicator of the possibility of successful treatment. Often by the time citizens with developmental disabilities are seen by a medical practitioner, symptoms of mental illness have become so acute that they present themselves in behaviors (often called acting out) that are injurious to the individual themselves or to the people around them. In the most devastating of situations this kind of spiral of non-treatment and misdiagnosis can lead to the use of both medical and physical restraints - approaches proven to be unsuccessful in mediating people’s behavior in all circumstances (Basic Principles in mental Health in Developmental Disabilities).
Poverty and a lack of monetary resources are also important impediments to consider when examining the lack of utilization of community medical interventions for citizens experiencing mental illness. The inability to move beyond traditional primary care physicians, to accessing specialized psychological services related to mental health often results in well intentioned medical practitioners prescribing powerful psychotropic medications, in lieu of psychiatry, counseling and a greater examination of social factors at play in the life of the patient (Ryan, 1993).
Many disability activists advocate for a common sense and about the power of prevention in terms of stemming the tide of loneliness, and marginalization which contribute to the lives of loneliness that people with disabilities often lead.
We met an elderly neighbor of ours, at the volunteer Fireman’s Pancake Breakfast. He was having a second pancake at one of the long tables across from us and was telling us about himself...One of the problems that he was having was that he has been steadily losing weight, to the point that he was very thin and frail. He went to his doctor - and what did his doctor do? He asked him if he ate alone. “Sure, I eat alone all of the time,” Old Mr. Wickham told him. “Well you shouldn’t do that; make sure you always eat with somebody else.” “So I did” he told us...”and you know what-it worked” (Schwartz, 1988).
It’s the relationships we have to each other that illuminate the darkest parts of our world. In our schools, in our workplaces, and, in our communities this single, simple truth remains. We exist for each other, and in each other we can often find the most powerful remedies for the greatest of our pain and suffering.
Photograph: Karen Edna Wallstein, Campbell Village U.S.A., Copake, NY, Photograph by Matthew Swarts, New York Times Magazine, September 10, 2000
Appendix A: Developmental Disabilities
Source: British Columbia Ministry of Health Services Family Physician Guide: For Depression, Anxiety Disorders, Early Psychosis, and Substance Use Disorders, Appendix 1
Appendix B: Syndromes Associated with a High Incidence of Mental Health Disorders
Source: British Columbia Ministry of Health Services Family Physician Guide: For Depression, Anxiety Disorders, Early Psychosis, and Substance Use Disorders, Appendix 1 (British Columbia Ministry of Health Services, 2007)
Appendix C: What I Believe At This Time by Margaret Wheatley
Source: Turning to One Another: Simple Conversations to Restore Hope to the Future, 2002, Berrett-Koehler Publishers, San Francisco, CA.
People are the solution to the problems that confront us. Technology is not the solution, although it can help. We are the solution -- we as generous, open-hearted people who want to use our creativity and caring on behalf of other human beings and all life.
Relationships are all there is. Everything in the universe only exists because it is in relationship to everything else. Nothing exists in isolation. We have to stop pretending we are individuals who can go it alone.
We humans want to be together. We only isolate ourselves when we're hurt by others, but alone is not our natural state. Today, we live in an unnatural state -- separating ourselves rather than being together.
We become hopeful when somebody tells the truth. I don't know why this is, but I experience it often.
Truly connecting with another human gives us joy. The circumstances that create this connection don't matter. Even those who work side by side in the worst natural disaster or crisis recall that experience as memorable. They are surprised to feel joy in the midst of tragedy, but they always do.
We have to slow down. Nothing will change for the better until we do. We need time to think, to learn, to get to know each other. We are losing these great human capacities in the speed-up of modern life, and it is killing us.
The cure for despair is not hope. It is discovering what we want to do about something we care about.
links to other materials, reports, articles, ... by Krista Flint
Works Cited or Consulted
- British Columbia Ministry of Health Services. (2007). Family Physician Guide: For Depression, Anxiety Disorders, Early Psychosis, and Substance Use Disorders. Victoria, BC.
- Dual Diagnosis Task Force of the Public Policy Committee of the Canadian Mental Health Association, Ontario Division. (1998, June). Dual Diagnosis: People with Developmental Disability and Mental Illness - Falling Through the Cracks. Retrieved May 24, 2009, from Canadian Mental Health Association: http://www.ontairo.cmha.ca/backgrounders.asp?cID=23090
- National Association of State Mental Health Program Directors. (2004, October). Serving Individuals with Co-occuring Developmental Disabilities and Mental Illness: Systems Barriers and Strategies for Reform. Alexandria, VA.
- Potonyak, D. (2008, June). Loneliness is the Only Real Disability: Implications for Policy Makers. Blacksburg, VA.
- Ryan, D. R. (1993). Dual Diagnosis. Human Sciences Press .
- Schwartz, D. B. (1988). Medical Advice. In J. M. David B. Schwartz, A Story That I Heard (p. 27). Harrisburg, PA: Pennsylvania Developmental Disabilities Planning Council.
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I think that in order to increase the pre-service training and education support to primary care physicians, psychologists and psychiatrists in order to stem the bias that exists in diagnosis and providing appropriate medical interventions as it relates to mental illness in citizens who have the label "developmentally disabled" is to require that they take at least one training workshop every two years related to developmental disabilities as part of their continuing education. If these medical professionals are not given the choice and it is part of their continuing education then it should increase the pre-service training and education support. It may also be beneficial to conduct lunch and learn series as well to encourage involvement with the pre-service training and education or to have evening training sessions at the local hospitals. It may also be beneficial to develop some internet based training that can be completed within a certain time frame that works with their schedule.