It will help meet all of the needs that a person with IDD and MH may have and support us as we develop a comprehensive plan.
Getting A Diagnosis & Treatment Plan
In discussing what Dual Diagnosis is we have already reviewed a lot of information in Section One that will be helpful for you to know if you are seeking a diagnosis. We discussed some things that might be indications of a mental illness and some of the issues that might complicate diagnosis.
Let’s talk about how to get a diagnosis.
Why is having an accurate diagnosis important?
There are challenges
Mental health needs are often missed
There are many reasons why mental health needs might be missed. We touched on some of them in the last section.
There historically have been four schools of thought about why individuals with IDD might have behavior problems. Sometimes when a person with IDD is experiencing problems, there has been a tendency for clinicians to look at just one of these areas.
We might find that just one of these areas is being considered.
Medical, Communication, Behavior, Psychiatric
To get a good diagnosis, we need to look at all these areas.
A Better Way -The Integrative Approach
Best practice is to use an integrative approach. The integrative approach is also referred to as the bio-psychosocial approach. A team-based family driven approach where mental health care, social needs, environmental supports and general medical care are offered in the same setting.
In this approach we are trying to be more comprehensive. We are looking at all aspects of the individual and his social and cultural background.
When we include all of the different areas and consider how they interrelate, we are going to get a more complete and accurate assessment.
The integrative approach identifies the supports that are needed and takes a proactive focus. It is a team approach using the expertise of multiple disciplines. Just as we plan in school to assist the individual student to have a smooth transition to adult life, we also want to consider, plan and prepare for transitions in treatment.
a model to consider
The medical home is best described as a model or philosophy of primary care that is patient-centered, comprehensive, team-based, coordinated, accessible, and focused on quality and safety. It has become a widely accepted model for how primary care should be organized and delivered throughout the health care system, and is a philosophy of health care delivery that encourages providers and care teams to meet patients where they are, from the most simple to the most complex conditions. It is a place where patients are treated with respect, dignity, and compassion, and enable strong and trusting relationships with providers and staff. Above all, the medical home is not a final destination instead, it is a model for achieving primary care excellence so that care is received in the right place, at the right time, and in the manner that best suits a patient’s needs.
In 2007, the major primary care physician associations developed and endorsed the Joint Principles of the Patient-Centered Medical Home. The model has since evolved, and today the PCPCC actively promotes the medical home as defined by the Agency for Healthcare Research and Quality (AHRQ).
A partnership among practitioners, patients, and their families ensures that decisions respect patients’ wants, needs, and preferences, and that patients have the education and support they need to make decisions and participate in their own care.
A team of care providers is wholly accountable for a patient’s physical and mental health care needs, including prevention and wellness, acute care, and chronic care.
Care is organized across all elements of the broader health care system, including specialty care, hospitals, home health care, community services and supports.
Patients are able to access services with shorter waiting times, “after hours” care, 24/7 electronic or telephone access, and strong communication through health IT innovations.
Committed to quality and safety
Clinicians and staff enhance quality improvement to ensure that patients and families make informed decisions about their health.
How Can We Make It Work In any setting?
Utilize a team approach
Using an integrative approach requires that team members understand the concept and work together to gather the information for the assessment.
Realize it takes more time
An assessment for a person with IDD will and should take longer and be more involved than for a person from the general population, and we need to understand that the thoroughness will pay off with a better intervention plan and better results.
In the long run, if we solve problems we are seeing currently, we will likely have to do less problem solving down the road
Assemble a team
Does this remind you of person centered support planning? Or Wraparound? An individual’s person centered planning or Wraparound team would likely be involved.
The Utah Parent Center’s workshop and materials on person centered planning has a lot of ideas that would apply to the way we diagnose and serve an individual with dual diagnosis. Allies with Families has more information about High Fidelity Wraparound.
Ensure confidentiality laws are followed.
What Do We Need to Do?
Review All Records, Reports, Histories and make sure to get release of information from all the different sources.
Conducting Interviews can be a good place to start with, we need to find out what pertinent information is already available.
A direct observation of the individual may be a part of the assessment. When doing an observation, keeping good data is important. If the observation is done after you have seen a change in behaviors, comparing with any baseline data that is available is important.
Families can start to assemble a history of the individual at home. Remember to describe what is being seen, and how it is different than what was seen before.
*Remember, the point of getting a diagnosis is to provide the starting place for a treatment plan. The diagnosis should include recommendations for treatment. This clinician or another clinician should play the role of following up and guiding treatment. If the clinician who makes the diagnosis cannot guide the treatment, then you could ask for recommendations and that there be some communication between the two.
If possible, choose a clinician familiar with Dual Diagnosis—One who can look at all the possible reasons for the behavior or problem.
Remember there are hundreds of possible diagnoses in the DSM-5, (Diagnostic and Statistical Manual of Mental Disorders) although just like in the general population, these are a few that are most commonly diagnosed.
Find a Mental Health provider-Asking the right questions
When choosing a mental health provider, ask plenty of questions to find out if the provider is a good fit for your family member’s team.
Here are a few for you to consider. Other questions are included in the handout section.
- Contact your insurance regarding Mental Health coverage.
- Find out if this provider is a team player or is willing to work with others who are already on your team
- Ask your doctor or other professionals you trust for recommendations.
- What is this person’s approach to treatment?
Does the Mental Health provider know how to adapt therapy for a person with intellectual or developmental disabilities?
Do I think this person will be a good match for my family member? Does this person seem to understand my child’s specific needs?
There are many other questions to think about. This could start the process – other questions may come to mind. Write them down.
When you go to the appointment, take the questions you have with you and be sure to take notes.
The Role of Families
Parents want to and should have a key role through the whole process. Knowing that it is possible can help you have the confidence to be involved.
You should consider yourself an equal partner in your role.
Remember, that you know your child or young adult the best. What you see as changes and concerns are a crucial piece to helping professionals understand what your child needs are throughout his or her life.
Exactness in describing the history and behavior is important. You can prepare yourselves by gathering and collecting data, as discussed earlier.
Some mental health diagnosis for individuals with IDD can include the following.
Mood disorders including Depression and Bipolar Disorder
Anxiety disorders (general, panic, OCD, PTSD) including Generalized Anxiety Disorder, Panic disorder, Obsessive-Compulsive Disorder (OCD), and Post-traumatic Stress Disorder (PTSD)
PTSD is becoming a very prevalent diagnosis for people with IDD with an estimated 60% of individuals having experienced some kind of trauma—usually incidents of abuse.
It is important to note that people cope differently and not all people who experience trauma or abuse develop PTSD. (See McGilvery Pg 35)
Adjustment disorders occur when emotional or behavioral symptoms develop in response to an identifiable stressor and are quite common for individuals with IDD.
Psychotic disorders include Schizophrenia and Delusional Disorder and several others where delusions or various kinds of hallucinations and disorganized behavior are experienced.
Impulse Control disorders have a distinct behavior pattern that is not due to drug or medication use or a medical condition. These can include Kleptomania, Pyromania, Gambling, Trichotillomania.
Bereavement can be more complicated for people with IDD. They may suffer more losses. Also, when there is a loss in their family, they may not have the same opportunities to grieve or process the loss or they may need more support through the process.
Substance Abuse including Alcohol and drug abuse, Caffeine, Nicotine/tobacco dependence is recognized as a substance abuse disorder
Attention Deficit Hyperactivity Disorder is a persistent pattern of inattention and/or hyperactivity. These symptoms are related to executive functioning which is an area that is frequently impacted for individuals with IDD. It can be tricky to identify because of the overlapping symptoms.
Autism is a DSM 5 diagnosis, so we have listed it here. It is another case, though where we have a triple diagnosis. Autism is a neurological disorder that has many symptoms that can also be symptoms of mental health problems. There is usually impairment in social interaction and communication skills and there are stereotyped behaviors, interests and activities.
Dementia—It is important to be aware of the possibility of dementia among older individuals with IDD. Some dementias are reversible and others can be slowed down by early treatment.
Again, That’s an overview of some of the more common mental health diagnoses. All of them require ruling out medical causes before making a diagnosis.
An accurate diagnosis obtained by a thorough evaluation is the key to a good treatment plan that focuses on the needs of the individual.
The treatment is based on the unique needs of the individual.
We at the Utah Parent Center wish you the best as you work to help your family member with disabilities create the life he or she dreams of. Be sure to access our website at utahparentcenter.org to see our extensive resources and training related to transition from high school to adult life. If you have concerns or questions, please give us a call and speak with one of our knowledgeable parent consultants.
5296 S Commerce Dr., Suite 302, Salt Lake City, UT 84107
Toll-Free in Utah: 1.800.468.1160
This Training is Provided by:
Allies with Families & Utah Parent Center
With Funding From:
The Transformation Transfer Initiative