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

Normal QEEG

https://www.google.com/search?q=Normal+QEEG

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