Community Participation and Independent Living Following Traumatic Brain Injury

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Community Participation and Independent Living
Following Traumatic Brain Injury

• Victoria Harding, MBA, MS CCC/SLP

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Agenda

• Types of Community Programs
• Means of assessing community integration
• Specifics of brain injury challenges and
  support needs
• Specific skills sets essential for community
  participation
• Treatment strategies 4 pronged approach
• The role of self efficacy in community
  participation and how to support it
• The role of social relationships in community
  participation and how to support them

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What is Community Integration?

• Outcome measure of rehabilitation
• Community integration success

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Returning to the community following brain
injury

• May also be termed
• community based, community
• recovery, congregate living,
• day treatment, family living,
• educational program, supervised
• living, independent living,
• supported independent living,
• recreation program,
• transitional living, vocational
• program

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Types of Community Programs

• Residential a program in which clients live in a
  home owned or rented by the program or its parent
  organization
• Facility Based a nonresidential program in which
  clients come from to a facility for services
  (often referred to as a community based
  program.
• Home Based a program in which services are
  delivered in a home that is rented/owned by a
  client, but not established or rented out by the
  program

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How Do I know What Level of Support Is Needed?

• The Community Integration Questionnaire (CIQ-R)
  Willer, Rosenthal and Kreutzer 1993
• The Community Integration Measure (CIM)- McColl,
  Davies and Carlson 2001
• The AIMS Interview Minnes, Buell, Nolte,
  McColl, Carlson Johnston 2001

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Community Integration Questionnaire (CIQ-R)

• An attempt to measure disability as defined by
  the World Health Organization
• Three sub-scales
• independence in domestic activity
• participation in social activity
• participation in productive activity.
• The frequency of participation in such activities
  is also reflected in the final scores.

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Community Integration Questionnaire (CIQ-R) cont

• People are considered integrated if they spend
  their time with people who are not disabled.
• Responses for each of the 16 items are assigned a
  value of 2, 1 or 0.
• For example, responses for the item Who usually
  prepares meals in your household? Can be selected
  from a) yourself alone b) yourself and someone
  else or c) someone else.
• The higher the score, the more integrated a
  person is considered to be.

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Community Integration Questionnaire (CIQ-R) cont

• A second scoring procedure is based on frequency
  of participation.
• Eg Participating in the activity less than once
  a month merits a zero score, between one and four
  times a month merits 1 point and more than five
  times a month merits 2 points.
• Questionnaire has its roots in the classic
  rehabilitation model first developed after WWI.

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Community Integration Measure (CIM) cont

• Considers people to be integrated to the extent
  that they report feeling that they belong.
• Measures 4 dimensions
• 1. General Integration orientation,
  conformity,
• acceptance
• 2. Social Support close and diffuse
  relationships
• 3. Occupation productivity and leisure
• 4. Independent Living independence and living
• situation

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Community Integration Measure (CIM) cont

• A 10 item questionnaire with responses given on a
  5 point scale from always agree to always
  disagree.
• Eg Questions such as I feel like part of this
  community, like I belong here. I feel that I
  can be independent in this community. I have
  something to do during the main part of my day
  that is useful or productive
• Rooted in the Gestalt perspective with focus is
  not on the presence of disability, but on the
  experience of disability.

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AIMS Interview

• AIMS Assimilation, Integration,
  Marginalization, Segregation
• A structured interview that looks at the nature
  of support and participation in the community in
  the following areas
• 1) Access to medical, specialty medical and
  dental services
• 2) Educational Services
• 3) Employment and Volunteering Opportunities
• 4) Social Activity
• 5) Community Involvement
• 6) Housing
• 7) Spiritual Activity

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AIMS Interview cont

• Score based on supports and services meeting
  identified needs in the community
• possible outcomes Integration, Assimilation,
  Segregation and Marginalization.
• Measures integration from a service delivery
  perspective with an emphasis upon environmental
  supports.

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AIMS Interview cont

• Target for change with this model is not the
  person with injury
• The highest score is given when
  disability-related needs are both identified and
  supported in the community.
• Has its roots in the American civil rights
  movement of the 1960s and the growth of the
  consumer rights activism that followed.

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How to get to the Community?

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Traumatic Brain Injury a very, very, very quick
overview

• CDC Case Definition for Traumatic Brain Injury
  (2007)
• An occurrence of injury to the head that is
  documented in a medical record, with one or more
  of the following conditions attributed to head
  injury
• observed or self-reported decreased level of
  consciousness
• Amnesia
• skull fracture
• objective neurological or neuropsychological
  abnormality
• diagnosed intracranial lesion
• or as an occurrence of death resulting from
  trauma, with head injury listed on the death
  certificate, autopsy report, or medical
  examiner's report in the sequence of conditions
  that resulted in death.

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Symptoms

• Symptoms of may or may not persist for varying
  lengths of time
• Physical (nausea, vomiting, dizziness,
  headache, blurred vision, sleep disturbance,
  quickness to fatigue, lethargy, or other sensory
  loss) that cannot be accounted for by peripheral
  injury or other causes
• Cognitive deficits (eg, involving attention,
  concentration, perception, memory,
  speech/language, or executive functions) that
  cannot be completely accounted for by emotional
  state or other causes and
• Behavioral change(s) and/or alterations in
  degree of emotional responsivity (eg,
  irritability, quickness to anger, disinhibition,
  or emotional lability) that cannot be accounted
  for by a psychological reaction to physical or
  emotional stress or other causes.

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For the Individual

• Im not the same
• I cant stop arguing with my wife
• I cant do my job
• I forget things like what I was going to do
• I get distracted and cant get things done
• I cant find my way around new places
• I always have a headache
• Im loosing my friends
• I cant say what I want to say right
• No one believes me
• What can I do to get back to my old self?

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For the Family

• He wont listen
• She spaces out all the time
• Hes moody
• She cant tell me whats wrong
• We cant pay our bills
• How long will it take until
• hes back to his old self?
• What can our family do
• to help?

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For the Employer

• She cant get her work done
• Hes falling behind
• She cant seem to prioritize
• He used to be so productive. Now he can only
  seem to do one project at a time and the quality
  is poor
• Shes fired
• What can I do to help him?

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The SLP may address

• Impairment levels of
• word finding, word/phrase production,
• spoken and written comprehension,
• concentration, attention, initiation,
• cognition, abstract thinking, awareness,
• decision making, deficit awareness,
• goal setting/prioritizing, impulse control/
• inhibition, information processing speed,
• judgment, managing emotions,
• metacognition, motor control, organizing/
• sequencing, planning, problem solving/
• reasoning, self monitoring, self perception,
• self regulation, set shifting, spontaneity,
• time management, verbal Communication, working
  memory,
• social skills (including turn taking in
  conversation, maintaining a topic of
  conversation, using appropriate tone of voice,
  interpreting the subtleties of conversation,
  responding to facial expressions and body
  language, keeping up with others in a fast-paced
  conversation)

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Evaluations

• Formal Evaluations used may include (this is not
  an exhaustive list)
• Repeatable Battery for the Assessment of
  Neuropsychological Status Randolph
• Test of Verbal Conceptualization and Fluency
  Reynolds Horton
• Communication Activities of Daily Living-2
  Holland, Frattali Fromm
• Revised Token Test McNeil Prescott
• Comprehensive Trail Making Test Reynolds
• Woodcock-Johnson III, Tests of Cognitive Ability
  Mathers Woodcock
• Assessment of Language Related Functional
  Activities Baines, Heerina Martin
• Boston Naming Test Kaplan, Goodglass et al
• Interviews and rating scales from family members
  and/or caregivers as to current performance
  within real-world functional settings are as
  valuable, or more so than any standardized test
  that can be performed in an office setting.

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The Four Pronged Approach to Treatment
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The Concurrent Four Pronged Treatment Approach

• 1) Education about TBI educate the individual,
  the family, the employer and other professionals
• 2) Impairment Level Process Training Treatment
• 3) Compensatory Strategy Training Treatment
• 4) Carryover to real world functional executive
  routines in a multidisciplinary treatment
  environment

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1) Education
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1) Education

• Self evaluation
• Awareness Intervention
• One to one and/or group TBI education on a very
  regular basis.
• Metacognitive training/prediction and discussion
  of task performance with comparison analysis of
  actual to predicted performance. Pre and Post
  Self Rating
• Video taping of task performance followed by
  objective discussion of same w/ clinical staff
  and/or peers.

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2) Education Self Perception

• Access the self efficacy mechanism!
• Behavior change inventories
• Self identified goals
• Self rating PRE and POST activity
• Feedback forms
• Videotaping
• Summaries

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Example of Pre/Post Self Rating

• Date
• Self Rating Scale
• 5 Most Excellent I will get up, and have
  finished my ADLs by 900 am
• 4 Good I will have a bit of difficulty. I
  might need staff to remind me once to shower,
  shave or to
• have my teeth brushed by 900 am
• 3 Average I will complete the activity, but
  staff will remind me more than three times to
  shower, shave or to have my teeth brushed by 900
  am
• 2 Not Well I will eventually be showered,
  shaved or have my teeth brushed by 900 am, but
  I wont have finished until after 900 am. Staff
  will remind me more than three times.
• 1 Im In The Basement I wont get all 3 things
  done, even after staff reminds me.
• Shaving using my electric razor to remove all
  unwanted facial hair I think I will achieve 1
  2 3 4 5cleaning my face and the skin
  area My actual achievement was 1 2 3 4
  5 My contact staff rating was 1 2 3
  4 5
• Showering cleaning hair and all body parts with
  soap and shampoo I think I will achieve 1 2
  3 4 5and water, rinsing off, toweling off
  and hanging up towel My actual achievement was
  1 2 3 4 5 My contact staff
  rating was 1 2 3 4 5
• Toothbrushing using toothpaste and toothbrush to
  clean teeth, I think I will achieve 1 2 3
  4 5rinse mouth, using cupped hand over mouth
  to check for bad breath My actual achievement
  was 1 2 3 4 5
  
  My contact
  staff rating was 1 2 3 4 5
• What I will do differently is

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Education Individual, Family, employer, other
professionals

• Individual family training sessions general TBI
  training of sequalae and neurotypical brain
  functioning, impairment level treatment
  activities, compensatory strategies and specific
  generalization examples, modified CBIS
• Employer physical basis for the change,
  compensatory strategies
• Other professionals treatment paradigm of the 4
  pronged approach

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2) Impairment Level Treatment
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2) Impairment Level Treatment

• Evaluation is essential PLEASE SEE HANDOUT
• Treatment designed to strengthen
  underlying/associated cognitive skills thought to
  be critical to optimal executive function.
  Approaches and programs/tools are abundant and
  readily available (see resource list). Some that
  we have found particularly useful and use
  frequently include
• Attention Process Training
• Neuropsychonline computer based cognitive therapy
  exercises in conjunction with carry-over
  discussion
• The Brainwave-R package of process training
  cognitive exercises
• The Brain Train Volume 3.3 cognitive retraining
  Software
• The National Rehabilitation Hospitals Cognitive
  Rehabilitation Skills Treatment Kit.
• PLEASE SEE HANDOUT

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3) Compensatory Strategies

• Develop the compensatory strategies
• Train individual and family
• Organization/manipulation of physical space
• manipulation of physiological factors such as
  nutrition, sleep, exercise and medication
• Teaching Task Specific Routines
• Common examples include bathing, dressing, meal
  preparation, house cleaning, laundry, bill
  paying, letter writing, operating household
  appliances or electronic devices are only a few
  examples of many that occur regularly within the
  context of daily home life
• Utilize an errorless learning approach w/
  minimization or elimination of any false steps in
  the routine and fading of such support over time.

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3) Compensatory Strategies
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3) Compensatory Strategies

• Common examples include bathing, dressing, meal
  preparation, house cleaning, laundry, bill
  paying, letter writing, operating household
  appliances or electronic devices are only a few
  examples of many that occur regularly within the
  context of daily home life.
• Utilize an errorless learning approach w/
  minimization or elimination of any false steps in
  the routine and fading of such support over time.

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3) Compensatory Strategies

• Errand Completion Tasks
• Accompanied multi-step tasks such as route
  finding in an office complex with several
  stops/tasks or shopping for several items at
  more than one location, such as in a shopping
  mall.
• Assistance to be faded as able to just
  accompaniment w/ observation only.

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3) Compensatory Strategies

• Time Management Tasks Examples
• preparing a meal that has several components that
  need to be completed within close proximity
• completion of impairment level homework tasks
  within set time frames
• completion of an agreed upon list of ADLs to be
  completed throughout the course of a single day.

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3) Compensatory Strategies

• Memory Training
• Systematically training and expanding the time
• interval for remembrance of future tasks, such
• as appointments or taking meds on schedule
• Person oriented vs environmentally oriented
• applications
• Best for memory storage, task execution or
• scheduling and sequencing
• Customized PDAs and memory compensation,
• DataLink, Cell phone cueing systems, voice
• organizers and audible reminders, adapted
• task-oriented programs for scheduling, bill
• paying, etc.
• Advancing portable and wireless devices to
• support participation in home and community
• activities, including GPS

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3) Compensatory Strategies

• How to Remember AnythingFrom Rick Parente, PhD
• Always try to translate something new into your
  own words. The translation is the mental glue
  that makes the information stick in memory.
• Go over the information immediately DONT WAIT!
  Most of what we call memory happens within the
  first hour after we experience something new.
• Try to relate the new information to something
  that is already familiar to you.
• Try to imagine the new information in the form of
  a picture, a chart, a diagram, a map, mnemonic or
  other visual image.
• If youre learning a new skill, practice doing
  it, explaining how to do it to someone else, or
  outputting the information in some other way.
• The Memory TRRAP
• T Translate into your own words
• R Rehearse immediately
• R Relate the new to the old
• A A picture is worth 1,000 words
• P Practice output

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4) Carryover to real world
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4) Carryover to real world

• Where education, impairment level process
  training treatment and use of compensatory
  strategies come together to effect change in
  function
• Error free learning with fading of supports in
  the
• Ideally, provided within the environment of life
  may not generalize

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4) Carryover to real world
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Supports Needed in the Community

• Following Brain Injury, people are often
• At high risk of significant decrease in
  friendships and social support
• Lacked opportunity for establishing new social
  contacts and friends
• Experienced a decrease in leisure activities
• Experienced high levels of anxiety and depression
  for prolonged periods of time

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Supports Needed in the Community

• New network ties
• Maintain and strengthen existing ties
• Enhance family ties

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Why are natural social supports necessary?

• To fade paid program supports

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Fading Supports

• Why?
• When?
• How?

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Factors Affecting Successful Independent Living

• Roles and relationships of family and program
  staff
• Alcohol and drug use
• Structured daily activities
• Financial management
• Emotional and behavioral self-control

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The many stages and phases of Brain Injury

• Accident/ event
• Will s/he make it through the night?
• Coma
• Waking up
• Rehabilitation
• Working with the sequelae
• Supervised living
• Supported Independent Living
• Independent living

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Thank you!Questions/ comments/ concerns?

• Victoria Harding, MBA, MS CCC/SLP
• Victoria.Harding_at_TheMentorNetwork.com