We have talked about how important it is to have a thorough evaluation and accurate diagnosis in order for the team to develop a comprehensive treatment plan using an integrative approach.
In order to implement the treatment plan well, there needs to be good follow-up monitoring of the individual’s response to treatments and the willingness and ability to make needed changes in a timely manner.
Recovery is not necessarily a cure. It is living life to the fullest despite challenges. Recovery will look different for each person and the plan that is created will reflect that. The goal is to craft treatment and interventions that help do the following.
Remember the three ‘P’s: Predict, Prevent, Plan.
In order to do this we must have active participation from the individual, every time as possible, and the family. With a focus on wellness remembering that while there is not a cure for mental illness, there are treatments and that will open the door to increased coping mechanisms.
The words we use are important. Understanding that as families we are coming from one system of thought, and that the professionals are as well, will help us to work together to create a better integrative approach to support our family member with an intellectual or developmental disability and a mental health need.
One of the big questions parents and family members often have is “What treatments are available?”
We want to discuss treatments that are evidence based. Evidence based practice means:
the conscientious, explicit and judicious use of current best evidence in making decisions about the care of the individual patient.
-Dr. David Sackett
It includes, best research evidence, clinical expertise, and patient values and preferences.
As we consider treatments, it is important to work with clinicians who know how to adapt treatments for individuals with IDD. It is also important to look for professionals who are willing to learn to work with individuals with IDD.
As previously discussed that we do not want to misidentify a medical need as a mental health need. We shared resources about general health and looking for medical reasons for some symptoms in Section One: Investigating the possibility and understanding the challenges. Here are general areas to keep in mind:
There are a variety of counselors, clinicians, and therapists that you might find have helpful things to offer. Usually they have a masters degree in a mental health related field, such as marriage and family.
It is always wise to know for sure what training any of these therapists has. They are not able to prescribe medication but can often help with assessments of different kinds as well as treatment.
The NAMI website has more information on these professions.
There is a lot to know about medications. Be sure to ask questions and make sure you understand all the instructions, side effects and possible interactions. Side effects for a person with IDD might be different than for a person in the general population.
Medication is often prescribed early on for certain psychiatric disorders including major depression, mania, and schizophrenia.
As with all medications, it is important to contact the doctor immediately in case of problems.
It is also important that all the medications a person is taking and the possibility of drug interactions be considered. It is generally best to add only one medication at a time in order to better monitor the effects.
A reliable data collection system should be in place to monitor medications.
“There is increasing acceptance of the use of psychotherapy for people with IDD. The issue is no longer whether people with IDD are entitled to psychotherapy or can benefit from it, but how the psychotherapy techniques can be adapted to meet the needs of people who have limitations in expressive and receptive language skills.
(Mental Health Approaches to Intellectual/Developmental Disability: A Resource for Trainers, Robert J. Fletcher et. al., Pg 280, NADD Press 2015.
Psychotherapy can be very helpful when adapted for the individual. The therapist should figure out what makes the activity difficult for the person and then adapt that activity.
Inpatient treatment could be necessary but creates a lot of challenges unless the setting is geared for people with IDD. Everything from the admissions process to the routine may need to be adapted.
Information needs to be presented in a way the individual can understand and the individual needs to feel safe and supported.
Outpatient settings allow for more individualization. They also should require that all the support people in the individual’s life be aware of the treatment plan and their roles. There needs to be communication and data collection. The team members may need additional training and supports. (See McGilvery pg 141-145)
Let’s talk about a few of the kinds of psychotherapy that are getting good results with people who have IDD.
There are many different interventions that have good evidence for effectiveness with individuals with IDD.
Behavior management is a common approach where behavior is analyzed and a plan is created and implemented. Approaches have evolved to be more positive and to consider the whole person including the person’s desires, wants, likes, dislikes.
When using positive behavioral supports, the goal is to first understand the purpose of the behavior and why it is occurring. This is accomplished through a Functional Behavior Analysis where the team works to find the function or the cause of the behavior.
Parents may have heard of the abc’s of behavior, an approach where data is collected on the antecedent or what happened before, the behavior, and the consequence. Data is collected and analyzed. Then a hypothesis about the function of the behavior is developed in order to point the way to positive interventions.
Some common functions of behavior can include (this list is not all inclusive)
A behavior assessment may also show that a behavior is what a person is using to communicate a change is needed for mental health and mental well-being.
Once there is a hypothesis or a theory of why the behavior is occurring a behavior plan is developed to target that specific behavior.
The behavior plan needs to be implemented systemically
There are many behavior programs out there and many ideas.
Using Evidence-based treatments is as important for behavior management as it is for medical management. Evidence definitely points to the use of Positive behavioral supports.
These programs usually focus on a combination of education and rehabilitation. They typically have small group activities that focus on:
Social skills training can be done in many settings including schools.. Education in social skills can help with many problem behaviors and enhance interpersonal interactions.
Individuals are taught effective and appropriate social behaviors.
Residential services may be needed at times for a person with IDD and mental health needs. One thing all of these have in common is that their caregivers all need to be part of the treatment plan.
Community settings include many different types of programs or arrangements:
Additional services may be called up in emergency situations. These services are designed for short-term use to stabilize immediate crisis Emergency Services
Short term to stabilize
There are many other services that can be part of the treatment plan of a DD person based on the individuals needs.
Typically these services are used in addition to one or more other therapies. It is very important when using additional services that there is good communication and coordination with the treatment team.
We have talked about the services that might be needed. As we talk about services we need to acknowledge that there are many challenges with service systems.
In the next section of the training we will talk about some things parents can do to help improve services.
In our current managed care systems there is great pressure on all kinds of professionals to do things very quickly.
A large study was done of over 28 million consultations In 67 countries over a number of years. The average time spent with patients is very short—generally about 5 minutes.
In an article discussing this study and the realities of treating more complex patients in Exceptional Parent Magazine we read the following:
“Not being able to “Beat the Clock” for AAMD (American Academy of Developmental Medicine and Dentistry) physicians, dentists, psychiatrists, behaviorists, neurologists, optometrists and other healthcare specialists means not being able to provide the optimal treatment, not being able to alleviate pain, anxiety and confusion, not being able to stabilize the patient, not being able to provide preventive therapies, not being able to minimize comorbidities (co-occurring disorders) and not being able to tell families that everything that can be done is being done.”
(Exceptional Parent Magazine, Beat the Clock by Rick Rader, MD, December, 2017)
What have other parents done to create more time for appointments? Ask for an appointment first of day, right after lunch, and end of day. Also, requesting a double appointment may allow time to discuss what is needed.
Let’s now talk about managing a crisis. What kind of crises could we be talking about?
One definition of a crisis is a serious deterioration of a person’s ability to cope with everyday life. It is important to recognize a deterioration so that we can take steps to stabilize the person.
The crisis is that the person needs more help and support of some kind.
When we talk about a crisis, we do not necessarily mean that the person is way out of control or that there is an immediate danger to the person or others—although that could be true.
We have talked a lot about the diagnostic process. However, when a crisis develops sometimes we need to get help before we go through that process.
We can remember the 3 P’s: Predict – Prevent – Plan, in developing a crisis plan helps us to think about possible challenges and to implement prevention strategies.
The crisis plan could be a part of the treatment plan. Receiving input from all the team members would be a good approach.
We should have a description of what a crisis would be for the individual.
We should have some clearly outlined actions to be taken and identify who is responsible.
This step is extremely important for people who have different caretakers. All need to be aware of the plan. Caretakers should have a list and contact information for the different services that might be needed.
In a crisis situation we must remember that how we act can contribute to our family member’s discomfort or our presence can be calming.
We can think ahead about what is comforting for us when things seem out of control. Are we a person who needs isolation? Quiet? Comradery? Touch?
Again, think “What kind of support would I want if I felt that way?” Remember you can be a powerful influence for comforting and calming.
Music?
Think how you would feel
What is comforting to you?
What comforts your family member?
Help with calming—be calm yourself
Don’t make big changes too quickly
Find other services that can help—including therapies and assistive technology.
Always be looking for more ways to support the individual to avoid a crisis or when there is a crisis. There are always amazing new things—new therapies being researched and developed.
NADD, a nonprofit association for persons with developmental disabilities and mental health needs since 1983, is an amazing resource. Some of the information for this training was pulled from books published by NADD. NADD provides training and certification, and is a go-to resource for professionals and family members.
This is a wonderful free resource for caregivers that has a lot of practical information on different mental health conditions for people with DD.
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
Phone: 801.272.1051
Toll-Free in Utah: 1.800.468.1160
Email: info@utahparentcenter.org
This Training is Provided by:
Allies with Families & Utah Parent Center
With Funding From:
The Transformation Transfer Initiative