Providing Integrated Care for Individuals on the Spectrum & Caregivers What Works and What Doesn’t?
A. Charate , MA, LCPC, CDAC, BCIA Board Certified
C. McCarthy, MA, LPC
A. Sarup, BA
Overview
Background Information
Integrative Care Series1. Working together as a Team with Caregivers2. Personalized Individual Therapy & Neurofeedback3. Working with Schools, Social Workers, and others
What is Known
FASD is associated with life-long cognitive and behavioral impairments
Primary behaviors are misunderstood Inappropriate interventions or punishments are used
Individuals are left frustrated and discouraged
Secondary behaviors are pervasive in adolescence through adulthood
Develop maladaptive behaviors to cope with a sense of rejection, failures, loneliness, and lack of meaningful relationships
Experience at the Center
Identify caregivers and providers knowledge on FASD
Provide needed education How FASD affects that particular individual
Pre and post treatment Quantitative EEG (QEEG) analysis
Connecting abnormal brainwave patterns and associated behaviors
QEEG Guided Neurofeedback trainings
Individual therapy & consultation to parents
Skills coaching, social skills groups
Patience and Skill Based Approach
Rely on research and what we knowBrain damage is the most serious aspect of FASD and presents the greatest challenges to learning and functioning in school
Effects: Cognition Behavior Social Skills
* The damage is permanent but it can be accommodated, but not cured.
Working together as a Team with CaregiversThe first step into truly integrated care
Caregivers Initial Consultation
Identify where they are in the process of treatment and their knowledge of FASD
Corroboratively create a treatment plan to ensure mutual understanding and an obtainable goal
Problems experienced from an individual and family system perspective
Their support systems and other strengths
Their motivation for change Some parents are willing to partner, some just rely on us for treatment
Validation, identify the issues, answer concerns, provide explanation, instill hope
Client
Therapist
Caregiv
er
Gears of the Vital Relationship to Impart Change
Self-Care for Parents
Observation of stress managementHow does couple function?
Date night, preferably sans talking about the child(ren)
Establish a daily 30 minute routine for self
Find ways to decompress and relax just like counselors.
Case Example: Lou
Personalized Individual Therapy & Neurofeedback The second crucial approach of integrative care.
Individualized Treatment
Person-centered Provide treatment that is applicable to the client’s functionality
Provide one on one treatment Develop rapport to facilitate openness and change
Assess willingness to change and insight
Teach them what to do rather than what not to do
Strategies for working with clients with FASD
Clients’ Difficulties
1. Visual or hearing impairments
2. Impulsive decisions and statements.
3. Difficulty with Abstract Concepts
4. Memory Deficits
5. Attentional Issues
6. Difficulty with Transitions
Counter Difficulties
1. Use Visual Cues
2. Role Play Clients often need to
practice situations with counselors repeatedly
3. Create attainable goals
4. Model appropriate behavior Teach how to get
someone’s attention in an appropriate way
Reinforce desired behavior
Individual Therapy- Dialectic Behavioral Therapy
1980’s: Marsha M. Linehan for adults with Borderline Personality Disorder symptoms:
Unstable self-image Unstable relationships Unstable emotions Inappropriate, intense anger or difficulty managing
their anger when it occurs Significant impulsivity
act before thinking
Symptoms for BPD and FASD overlap
DBT aims to teach the children coping skills which directly targets these symptoms
Therapist will help clients identify triggers to emotions, label and rate her emotions, and teach strategies such as:
Mindfulness Asking for help appropriately Recording emotions daily Emotional regulation
Individual Therapy- ACT
Acceptance and Commitment Therapy: Accept thoughts (don’t fight them) Learn skills to cope with thoughts Allow them to come and pass Staying within the present moment, i.e.
mindfullness. The opposite of mindlessness. Mindless lives involve constantly thinking
about the past, schedules, plans, work, etc. without taking time to be in the present moment.
Focus on becoming aware of all incoming thoughts and feelings and accepting them, but not attaching or reacting to them
Mindfullness allows our clients to more aptly deal with current stressors and distressing feelings with a flexible and accepting mindset
Cognitive Defusion
Most individuals, will experience their thoughts as facts.
Therapist can help “defuse” these thoughts into much broader statements.
Separating themselves from facts
I am anxious! I am having a feeling…
I have noticed that I am having a
feeling
Assessments
Pre treatment and post treatment Quantitative EEG Analysis (QEEG)
Pre and post treatment CNS Vital Signs testing
measures core neurocognitive brain. Attention, memory, executive control, processing speed, cognitive flexibility, social anxiety, reasoning, working memory and more… (computerized tests)
Neuroplasticity
Human brain is plastic
It can change and adapt under the correct circumstances
If the brain experiences trauma to one location, then other location takes over it’s specific function
It requires some cognitive efforts and trainings in order to make the needed changes
Mental & emotional states Sensory informational processing Memory formation and retrieval Cognitive and decision-making processes Communications from all of the above
THE BRAIN CAN BE STRENGTHENED AND CHANGED, IF IT IS CHALLENGED
Pre-Treatment Q-EEG
Pre-treatment helps us develop protocols based on the presenting symptoms and brain-mapping results
A QEEG offers comparative norms for clients based on age, gender, handedness
Completely non-invasive treatment Measures brain waves which produce a signal that can be
used as feedback on brain activity to teach self-regulation
Typical treatment includes 30 minutes neurofeedback followed by 30 minute parent consultation and behavioral modification through psychotherapy
Skills coaching using DBT/ACT therapy skills Social Skills groups/ Project Good Buddies Parent support groups
Charting progress every 10-15 sessions
18 months Post Treatment Follow Up
Three Years Post Treatment Follow Up
Instilling Hope
The EEG helps people objectify the symptoms in a world where symptoms are often reported in the subjective
Helps explain the child’s behavior is somewhat out of their control at the moment.
Tangible evidence that you can see and helps family understand that the client IS trying but their brain is not functioning optimally
For the child or the young adult, it’s much more understandable as to why they are struggling in school and they have more willingness to come for treatment
Neurofeedback
Neurofeedback helps regulate overstressed or underactive brains and is helpful with issues of focus and attention, behavioral issues, sleep concerns, headaches, and emotional issues
The essence of neurofeedback / eeg biofeedback is that when a monitor displays your brainwave activity, you can quickly learn to change that.
Audiovisual feedback system based on the principle of Operant Conditioning
Crucial that clients come regularly and twice a week
Begin to see results at 20-30 session mark
Re-assess and possibly change location
During and Post Treatment QEEG
Other conditions that can benifit from neurofeedback include: ADD / ADHD, Anxiety, Insomnia, Headaches Migraines, Chronic Pain, OCD, Anger, Conduct Disorders, Learning Disorders, Sensory Processing Disorders, Neurodevelopmental conditions, and ASD
Would Medications Interfere with Training?
Based on a survey with over 150 clinicians, it was widely reported that more than half their neurofeedback clients started neurofeedback while taking one or more medications.
Neurofeedback is complimentary to many treatment approaches and tends to act synegistically to medications.
May improve the response or stabilize the effects.
The theory about reducing dosages is that as the brain becomes more activated during training, it works more efficiently. The same dosage seems to have a stronger effect on a more efficient brain, and thus reduction may be required.
Other Neurotherapies
Low Energy Neurofeedback Stimulation (LENS) Uses feedback directly from the skin of the scalp and
requires no visual or conscious feedback The result is a changed brainwave state, and much
greater ability for the brain to regulate itself It addresses the underlying neuropsychological
functions as a rehabilitation tool increasing the self-regulatory capabilities of the brain
Disrupts the dysfunctional patterns and letting the brain re-establish the connections.
Coherence Training Measures how well-coordinated the communication is
between one area of the brain to the other If two areas are communicating too little or too much, it
can interfere with the efficiency of the brain QEEG brain map is a tool that helps assess coherence
Abnormal Asymmetry & Coherence
Training Results
Working with Schools, Social Workers, and othersThe Final Step of fully integrative care
Indiscriminate Lack of Knowledge throughout Multiple Systems
Secondary behaviors place an immense emotional, financial, and social burden on individuals and their caregivers
Need for constant vigilance to manage their cognitive and behavioral challenges
Extremely limited support from providers, community members, and extended family
Barriers at the Systems Level
Delayed diagnosisDifficulty in qualifying for servicesLimited availability for required services
Difficulty in maintaining services and supports
Lack of knowledgeable professionalsAn inadequate amount of effective services
A shortage of providers who accept Medicaid
Adaptive Behaviors
Ability to care for self, interact in a social world and function in the community
Fetal Alcohol Spectrum Disorder Demonstrate lower level of adaptive behavior relative to their intellectual functioning
Significant executive functioning deficit Plan, organize and shift attention in a goal
directed way Adolescents and young adults are required to inhibit impulses, plan goal directed activities in increasingly complex and social situations
Gap widens between peers
What is needed?
1. Access to disability services based on level of disability functioning rather than IQ
2. A quality neuropsych assessment to help develop learning and behavioral plans
3. Additional educational support to enable these children to stay in the school environment
4. An FASD expert in every school district, judicial system and employment services that will act as advocate
5. Assistance in planning leisure and unstructured times
What works vs. What doesn't
What doesn't work?
Speaking slow and
using visualization
s
Teach them what they should do.
Cool Down Breaks before lessons
Repeat, repeat, repeat
Reward appropriate
behavior
Understand they are trying
Clear concise
instructions
What does?
Using analogies
and complex instructions
Tell them what not to
do
Punishment Lecturing in the moment .
Expecting immediate
learning
Giving up too quick
Complex instructions
In the Schools
Common Issues for Teachers to Understand Lower than average IQ
Difficulty with planning and organizing
Short term memory problems
Context-specific learning and difficulty accessing information on demand
Poor grasp of abstract concepts
Developmental delays in language, motor, and social skills
Difficulty reading social cues for appropriate behavior
Poor sensory integration
Math deficits causing difficulties in
Counting money Making change Maintaining budgets and Reading analog clocks
How Students with FASD Learn Best
Concrete hands on learning
Good expressive language skill but difficulty understanding what others say
Teach how to ask for help
How to appropriately handle frustration and disappointment
Teach self talk
Limit transitions
The Neurofeedback, Counseling, and FASD Institute of Illinois.
24W500 Maple Ave.
Naperville, IL 60540
PH: (630) 548-4501