Peeling Back The Label Of Dual Diagnosis
Posted 4/25/18 via Capstone e-Newsletter
By Mary Kay Rizzolo | CQL President & CEO
The term dual diagnosis is often used to refer to people with intellectual and developmental disabilities (IDD) who also have psychiatric disabilities. Although estimates of prevalence of dual diagnosis vary, research suggests people with IDD are more likely to have a psychiatric disability than the general population (Friedman, Lulinski, & Rizzolo, 2015).
So what does having a dual diagnosis mean for people's lives? How does it impact outcomes? And, what can support providers do to ensure that they are supporting people with dual diagnosis in the most effective way possible? As usual with Capstone e-Newsletter, the perfect place to start with all of this is data. Let’s begin by taking a look at the disparities people with dual diagnosis experience in comparison to those with only intellectual disabilities.
Quality Of Life Disparities Of People With Dual Diagnosis
By Carli Friedman | CQL Director of Research
Out of the 850 people with IDD in our 2017 sample (through CQL's PORTAL Data System) 47.7% (n = 404) had dual diagnosis. People with dual diagnosis faced a number of disparities in quality of life outcomes. Compared to people with IDD only, people with dual diagnosis were less likely to live in integrated environments, participate in the life of the community, have natural supports, have intimate relationships, perform different social roles, choose where and with whom to live, choose where to work, and choose their services (see figure).
The largest quality of life disparity people with dual diagnosis faced was choosing where and with whom to live; this difference was significant even when impairment severity was controlled. Only one-fifth of people with dual diagnosis chose where and with whom to live. In terms of residence types, people with dual diagnosis living in their own homes most often chose to live there (see figure below). However, only 9.5% of people with dual diagnosis who lived in provider-owned or operated homes had the “choose where and with whom to live” outcome present. In fact, people with dual diagnosis who lived in provider owned or operated settings were approximately 5.1 times less likely to choose where and with whom to live compared to people who lived in their own home.
In terms of organizational supports, people with dual diagnosis also faced disparities receiving supports for: living in integrated environments, choosing where and with whom to live, choosing where to work, and choosing their services (see figure). Again, choosing where and with whom to live had the largest disparity, with only 23.9% of people with dual diagnosis receiving organizational supports for this area.
Moreover, provider-owned or operated settings were 3.5 times less likely to provide supports for people with dual diagnosis to choose where or with whom to live compared to organizations that supporting people living in their own homes. This is particularly problematic as people with dual diagnosis who are supported to choose where and with whom to live have better overall quality of life (14/21 versus 9/21 outcomes) (see figure).
Education & Individualized Supports
By Katherine Dunbar | CQL Director of Accreditation
One of the most important aspects of supporting people with dual diagnosis is education. Organizations must acknowledge that people can have dual diagnosis, not just dismissing symptoms or attributing them to “behaviors.” This means learning about the symptoms of a diagnosis and what they look like for that person, including what factors exacerbate symptoms, as well as how to remove or minimize those triggers. This may be particularly pertinent for instances of post-traumatic stress. This can go unrecognized and underdiagnosed, leaving people to relive trauma.
Knowledge is power; learning more about what dual diagnosis looks like for that person is the first step to supporting the person through what they are experiencing and helping them determine the best ways to acclimate to their symptoms and reduce their triggers.
Supporting people with dual diagnosis also relates to control and choice. Sometimes a person’s symptoms may be exacerbated by the lack of control they feel they have. If people with dual diagnosis get frustrated because they feel they are not allowed to make a decision, consider what you can do to ensure people are able to make the decisions they want. Ensuring the person has the fewest rights restrictions possible and the most opportunities can be one way to support people.
In terms of the large disparities in supporting people to choose where and with whom to live that Carli mentioned above, it is really about talking to people, listening, and then following through. If someone is fighting with their roommate, talk about it and compromise. Helping with conflict resolution – giving people the tools to resolve conflict – might help them to be more satisfied. It’s also important to recognize adding more staff is not always the answer; often people need less staff time. All people have an innate need for personal space and determine how best to support that person to have the physical and psychological space they need.
Ultimately, it’s about ensuring organizational supports are individualized rather than ‘one-size-fits-all’ approach. While this may be hard because of funding limitations, creative and low-cost solutions can be implemented to improve the quality of life of people with dual diagnosis. For example, it is helpful for organizations to track data to determine where the largest support disparities are in their organization, so they can be more intentional about providing specifically targeted and individualized supports to counteract those disparities. To learn more about specific steps support providers can take, we turn things over to Jason Buckles who emphasizes the need for being more empathetic in our approaches through the ‘TIC’ model.
Focus On The Stress, Not The Labels
You’ve seen the paperwork. The seemingly endless lists of diagnoses that may be in the charts of the people we support. Major depression, anxiety, intermittent explosive disorder, schizophrenia, attachment disorder… and on and on.
Taking these at face value can be overwhelming. It can seem as if there are so many things going on that it’s difficult to find a place to begin to help. Yes, it is important to have some understanding of what all of these terms and labels may mean but always remember, behind all of these diagnoses are people. People with the same ordinary needs, hopes, and desires as you have. People who are doing the best they can with the tools they have to navigate the intensities of this world.
Let’s make this a bit simpler: When you, or I, or the people we support get stressed out or, are living in a state of high stress, we exhibit symptoms of this stress. Some people get sad. Others get anxious. Others behave in concerning ways.
To boil it down further – just keep this in mind ...
Stress Leads To Symptoms
For many of the people we support, the stresses can be constant and overwhelming. To list just a few: lack of money, lack of social relationships, living with people they did not fully choose in places that may not have been the first choice, moving multiple times, loss of family connections, having a team of people with plans, changes in staff, medical conditions, and medication side-effects are just the ones that occur to me off the top of my head. Now, add to this the fact that we only know part of the story. Often, we know little to nothing of the life the person lived before. The traumas, large and small, that they have survived.
We do know, however, that people with intellectual disability have a much higher rate of experiencing abuse (sexual, physical, emotional) and neglect than nearly any other group of people.
Because of the above, it is highly likely that many, if not the vast majority, of people we support have experienced multiple traumas in their lives. The ‘symptoms’ or patterns that an individual shows us may be his/her way of expressing the stress of these traumas.
In brief – there may be only one diagnosis that could guide most of our work ...
Post Traumatic Stress
Notice, we did not put the word ‘disorder’ in the diagnosis above. We leave this out because we think it is unfair to call a person ‘disordered’ when they are simply reacting a way anyone might react to a disordered situation. It was the event that was disordered – not the person.
So – what do we do? There is no easy answer but there are some simpler things that may help. At A Better Way of Living we integrate ideas around ‘Trauma Informed Care’ (TIC) into our staff trainings and models of support. Using a TIC model, when we approach ideas around supporting a person, we assume that some trauma may have occurred in their life. We want our supports to be ‘informed’ by the knowledge of the trauma so we avoid doing more harm in our efforts to help.
This is similar to what you may see in the response of EMTs or Paramedics at a car accident. The first responders will often place a neck brace on those involved in the accident even if there is no immediate evidence of a neck injury. Instead of thinking, ‘I don’t see any injury so let’s act like it’s not there’, they make the safer assumption that there may be an unseen injury and placing the brace on may help prevent further harm.
From a psychiatric or behavioral perspective, the ‘neck-brace’ has a lot to do with how we act, approach, and think about how we are supporting the person. Below are just a few ideas of how we may integrate some of this approach in our daily work.
These can apply to everyone in our lives:
- Focus on understanding what helps the person de-stress, relax, etc. Do as much of this as possible. If some of our goals are to teach new skills, then this can be really difficult if the person is over their limit for stress. When we make room for a person to de-stress we help their to have more room to learn.
- As much as possible, avoid adding stress to the person’s life. They do not ‘live in your workplace’. We work in their homes (and jobs, and shared community). Keep this in mind and act in the way you would hope someone in your house might behave.
- You cannot cure stress by adding more stress. You cannot treat trauma with trauma. If you were shot – that would be like asking a doctor to shoot the bullet out of you. Interventions or reactions that scare, intimidate, or stress a person out will only lead to more symptoms.
- Instead of thinking “What’s wrong with you?” you can re-frame it as “What happened to you?” Just this simple change in our internal questions can change how we think about and end up reacting to the person. Instead of framing it as something ‘wrong’ internally to the person, the question, ‘what happened to you?’ helps us to remember that we are all struggling to make sense of and survive the many emotions and memories that live on long after the event has ended.
And, when all else fails, or you don’t know what to do, whether you are ‘on the clock’ or not, remember these two things ...
- Brown, T. A., & Rosellini, A. J. (2011). The direct and interactive effects of neuroticism and life stress on the severity and longitudinal course of depressive symptoms. Journal of Abnormal Psychology, 120(4), 844-856.
- Burns, R. A., & Machin, M. A. (2013). Psychological wellbeing and the diathesis-stress hypothesis model: The role of psychological functioning and quality of relations in promoting subjective well-being in a life events study. Personality and Individual Differences, 54(3), 321-326.
- Horner-Johnson, W., & Drum, C. E. (2006). Prevalence of maltreatment of people with intellectual disabilities: A review of recently published research. Mental Retardation and Developmental Disabilities, 12, 57-69.
- Keesler, J. M., & Isham, C. (2017). Trauma-informed day services: An initial conceptualization and preliminary assessment. Journal of Policy and Practice in Intellectual Disabilities, 14(2), 164-175.
- Mahoney, A., & Poling, A. (2011). Sexual abuse prevention for people with severe developmental disabilities. Journal of Developmental and Physical Disabilities, 23(4), 369–376.
- Mitchell, A, & Clegg, J. (2005). Is post-traumatic stress disorder a helpful concept for adults with intellectual disability? Journal of Intellectual Disability Research, 49(7), 552-559.
- Sullivan, P. M., & Knutson, J. F. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse and Neglect, 24(10), 1257-1273.