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"You are important to me"
Help DSPs be the best they can be
John Dickerson, Mary Ciccarelli, Kelly Hartman
September 2018
Objectives
1. Improve training of Managers and DSPs
2. Discuss emerging client heath and wellness issues
3. Discuss emerging behavioral health issues
4. Establish a culture of workforce well-being
DSP Workforce
1. 70% Women – moving from second paycheck in family to only paycheck
2. 40% are recent immigrants to this country
3. $400 unexpected bill is crisis point
4. 60% are underbanked – have checking account with debit card no checks or savings
5. Growing number of immediate family members are now direct staff for their family member- estimated 20% in Indiana
6. Subject to payday lenders predatory practices
7. Transportation and day care are critical parts of their lives
8. 50% turnover – most moving from one agency to another
Make no mistake :
Raising salaries and benefits for our workforce is absolutely essential - but there is so much more we need to do.
Think of the very best staff youhave hired in the last six months
Mindful Communication
Building Your Culture
Hiring, promoting the right people
Three takeaways that you can start practicing today!
Mindful Communication
15 minutes a day looking for the extraordinary
Tell your team about their success
Five Dime exercise
Look to your email, texts and voice mails
Realize how your staff communicate today is different than how you do
Everyone responds to positive attention
What behaviors do you model, talk about with your managers Rowers, Sitters, Drillers
Building Your Culture
Answer the question “How much time do you spend developing the culture of your organization?”What’s your cultural address?Ask others what brings them joy? Do more of it!
Do it Better…One at a time
Hiring, promoting the right people
Orientation ID future all-starsKeep list of people to mentor-encouragePromote people who get to know their
staff, their family situation, their kidsWould you take an 8 hour road trip with
this new hire?Coverage or CharacterAmbassadors – your best recruiters Ask your staff what brings them joy?
Intro
Summary
Introduction
Let’s make it simple. “You are important to me.” DSP staff are important to their employer organization. DSP staff themselves are important to the people they serve.
Helping persons with intellectual disabilities doesn’t have to be highly scientific or complex.
Let’s build concrete, small steps to better serve this population. Use reflections: Walk just a minute in my shoes. Ask questions:
What am I trying to tell you with my words and actions? What do I feel and sense? About my body? About you? About my world? What are my brain's strengths and weaknesses?
Expand your basic understanding of the persons we serve.
Intellectual Disability
Mild IQ 50–55 to 70
Moderate IQ 35–40 to 50–55
Severe IQ 20–25 to 35–40
Profound IQ < 20–25
What does this mean?
Adaptive function with significant limitation before age eighteen
Issues with Perceptions, Reasoning, Memory, Speed
Patient has areas of need in their life: Communication, handling money, self-managing Interacting with others, following rules Daily activities – taking care of own body and home,
getting around
AUTISMWhat does this mean?
A. Social communication and interaction
1. Usual back and forth of interaction between people
2. Showing emotions, acting typically within a society
3. Maintaining relationships – distinguishing different interactions or desire to interact with others
B. Restricted, repetitive patterns
1. Echoing language, doing something over and over
2. Uses rituals - can’t change pattern of behavior, selective eating, asking same question
3. Fixated on something – i.e. loving trains or dinosaurs or a TV show
4. Oblivious or bothered by sensory information, i.e. pain, smells, noises
Health Habits
Communication
How does the patient communicate?
Is receptive language better than expressive language skills? Verbal language Sign language Switches Pictures Augmentative Communication Devices
Proloquo2Go on ipad
Pain
How does the patient manifest pain?
Health Habits
Does the patient manage own body cues and health habits? Continence, swallowing, thirst, sleepiness, hunger, etc.
Does anyone observes activities of daily living? Eating, toileting, etc.
Value of Health Habit Education Special Olympics Indiana project
Value of Comprehensive Health Check Prevent predictable problems
Royal College of GPs’ guidelines: Annual Health Checks in people with learning disabilities
Body cues: What do we know?
Eating Food selectivity Choking Over/underweight
Hydration
Toileting Diarrhea & constipation Urinary incontinence Menstrual hygiene
Hygiene Wash hands, bathe, cut nails, etc.
Sleep problems
“The Fatal Four” & Perceptual Reasoning
Individuals with ID increased morbidity & mortality1. Aspiration2. Dehydration3. Constipation4. Seizures
Morbidity associated with limits in perceptual reasoning
Sensing information from one’s body and reasoning next steps
“Is my bladder full? If I don’t listen to that cue, I have an accident.”
Fussy Eating
Food cravings & refusal Selectivity & texture specificity
Specificity in presentation Grazing Disruptive mealtimes Cramming, pace, poor chewing
Kodak T. Child & Adol Psych Clinics NA, 2008
Interventions Set mealtimes and meal durations Minimize distractions (TV, phone) Keep meals calm w/ goal as enjoyable
experience Adults sit down with children and eat
same foods Offer the child what everyone else
eats, also provide a preferred food Refrain from pleading and threatening Use ignoring or brief time-outs if
needed After family finishes, allow child also
to leave table Don’t provide food until next
scheduled meal/snack
Intensive programs
GI Toileting issues
Kids with PDD
46% had GI sx Daytime behavioral problems
45% diarrhea/constipation 19% diarrhea, 19% constipation, 7% alternate diarrhea &
constipation
Rectosigmoid loading54% , acquired megarectum 24% c/w 2%–5% gen peds popln
Erickson CA. J Autism & Dev Disorders, 2005.
https://www.youtube.com/watch?v=SgBj7Mc_4sc
Hydration
What do you drink?
How much?
What color is your pee?
Use a water jug for the day.
Toileting aids Timed sitting
Visual supports Step by step process
Awareness of sensory issues Treat constipation
Clean out Floppy colon Maintenance and Flares
Wheeler, M. Toilet Training for Individuals w/ Autism &
Related Disorders
Sleep
How much sleep do you need?
Principles of sleep hygiene Regular and consistent bedtime Structured bedtime routine Avoid caffeine Regular exercise Avoid interfering activities (e.g., TV in bed)
Restriction of daytime sleep Consider sensory appropriate bedding textures
Melatonin decreases sleep latency and onset Risk - alter seizure threshold 0.5 -1 mg at 1 hour before bedtime “Resets”
Light therapy
Consider iron deficiency
Malow BA. Mental Retard & Dev Dis Res Rev, 2004. Wirojanan J. J of Clin Sleep Med, 2009.
Hygiene –training and reminders
Dental
Increased dental caries risk
Dental hygiene needs Ritual Type of toothbrush Source of fluoride
Marshall J. Ped Dentistry, 2010.
Hygiene
Weekly tooth-brushing instruction
Improved dental care 8.8 > 48.8% all surfaces
Bizarra F. Intl J Dentl Hygn, 2009.
Checklists
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Behavior
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Situation –> Behavior
Argument with partnerFeel achy all overRemember funny jokeBad day at workNervous about traveling
yell, scream, cussslam doors, throw thingsdrink, smoke, take drugsbite your nails withdraw, sleep, eat laugh out loud, repeat self
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Labels Separate People
yell, scream, cussslam doors, throw thingsdrink, smoke, take drugsbite your nails withdraw, sleep, eat laugh out loud, repeat self
>VERBAL AGGRESSION>PHYSICAL AGGRESSION>SELF INJURY>ANXIETY>DEPRESSIVE SYMPTOMS>PSYCHOSIS
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PBS 101Positive Behavior Supports
What PBS is:
Belief that all behavior is a form of communication. Understanding that people don’t randomly have behaviors – there is a reason We want to develop strategies to help people get what they want safely Preventative, Proactive, Supportive Person Centered Based on strong functional assessment (The team has to know WHY!)
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PBS 101Positive Behavior Supports
What PBS is NOT:
Generic Aversive Restrictive Use of manual or mechanical restraints Crisis Intervention
5 Tools to Better Support People
Learning (& living) does NOT happen during negative “behavioral” expression
In order to change someone’s behavior – you have to know WHY the behavior is occurring
Know the individuals story, recognize effects of trauma Understand the basics of how the brain works How you treat others is impacted by your own perceptions
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working
hobby
volunteering
friends
family
partnercounseling
relaxing
emotional/behavioral
job shadowing
health/well being
cultural/spiritual
music therapy
recreational therapy
behavioral supports
day services
residential supports
classes
BEHAVIOR
LEAST RESTRICTIVE INTERVENTIONS
MORE RESTRICTIVE INTERVENTIONS
MOST RESTRICTIVE
social/relationships
vocational/educational
exercise
meal planning
economic/self sufficiency
praying/meditating
worshipping
medical appointments
clubs
money management
benefits planning
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Understand the WHY
Example: Targeted behavior: punching himself in the ear with a closed fist
WHY is this happening?
• Sensory avoidance? – trying to avoid a certain kind of sound, or trying to stop auditory hallucinations
• Sensory Seeking? – likes how it feels, likes the sound• Experiencing pain? – has a headache, or an ear ache• Wants a response from caregiver? Learned response to staff attention
How we respond is very different for each situation – we have to know WHY!
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Understanding the role of trauma
We have to stop asking “what is wrong with this person” and start asking “What is your story?”
• Between 34-53% of people with severe mental illness nationally reported childhood physical/sexual abuse
• Approximately 25% of all children with disabilities acquired the disability as a result of abuse
• More than 90% of all people with intellectual/developmental disabilities have experienced some level of trauma through their lifetime, more than 70% of those victims report the trauma occurring repeatedly
People must feel safe both physically and psychologically to feel empowered!
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I won the lottery and I am the richest person you have ever met
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Contact InformationJohn Dickerson Quillo, Founder & CEO [email protected] Mary Ciccarelli, MD Center for Youth & Adults with Conditions of Childhood (CYACC) Internal Medicine & Pediatrics, IU Health [email protected] Kelly Hartman, MA Insights Consulting, President & CEO Outside the Box, CoFounder [email protected]
