The document describes the UMass Medical Home model for providing care to individuals with intellectual and developmental disabilities (IDD/ASD) who also have complex mental health needs. The Medical Home model aims to provide coordinated, multidisciplinary specialist care to improve outcomes while reducing costs compared to usual care. It focuses on prevention, skills building, and comprehensive evaluation to properly diagnose and treat medical problems that may be overlooked or misattributed to psychiatric issues. The goals are to decrease emergency visits, hospitalizations, restrictive care placements and reliance on complex medication regimens by improving access to services and care coordination.

1. UMASS Intellectual Disabilities
Mental Health Services
Laurie Charlot, LICSW, PhD
Dir Intellectual Disabilities Services
Assistant Prof, Dept of Psychiatry
UMass Medical Center
328 Shrewsbury Street
Worcester, Ma 01655
508-334-6693
FAX 508-856-3595
charlotl@ummhc.org
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2. UMass Multidisciplinary
IDD/MH Team: The Medical Home Team
• Laurie Charlot, PhD
– Developmental Psychologist
• Paula Ravin, MD
– Neurologist
– Movement Disorders
Specialist
• Bob Baldor, MD
– Primary Care
– Family Medicine
• Van Silka, MD
• Psychiatrist
• Leslie Rubin, MD DBP
• Kathy Collins, PhD – Clin Psych
• Mary Crane, BA – Behaviorist
• Staci Fleisher, PhD - PsyD
• Speech and OTR consulting
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3. GOALS
• Describe the UMASS
Medical Home Model
• Discuss risk issues that
cause individuals with
ID/ASD to require
specialized help
• Advantages of a Medical
Home for patients with
ID/ASD & MH - complex
needs
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4. What is a “MEDICAL HOME”?
• Not a HOUSE
– a “virtual home”
• All the core
healthcare treators
are:
– ID/ASD specialists
– Members of a
cohesive team
– COLLABORATIVE!
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5. Why Do We Need a Medical Home?
Problems with “Care as Usual” for people with
ID/ASD and complex behavioral health needs
• Lack of collaborative,
connected, multidisciplinary
care
– Caregivers primary complaint
is that care is uncoordinated
– Communication about care is
often poor
– Parents or sometimes group
res managers are Health Care
Managers
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6. Models of Mental Health Care for
Individuals with ID
• Affordable Care Act
• New Opportunities to
define structure of
care delivery
• Current forms are a
poor match for
population needs
• Small #s pts >>>Large
utilization
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7. Working Smarter not Harder: Goals
of the UMass Medical Home Pilot
• Provide multidisciplinary specialist care with
coordination
• Improve behavioral and health outcomes
– DEMONSTRATE with outcome measures
• Create a replicable model “manualize”
• Demonstrate this form of care costs same or less
– Longer term, lower costs due to reduced morbidity
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8. • Not everyone needs Medical
Home
• Small cohort : accounts for
large % of service use
– The most expensive and
restrictive forms of care
• Major savings possible
– Reduce use of high cost forms
of care with improved clinical
outcomes
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Working Smarter not Harder: Goals
of the UMass Medical Home Pilot

9. Pay Now..Pay Later
You Pay or I Pay
Mostly..Patients and Family Pay
• In many cases, cost for ER,
Inpatient >>>> from a
different place than cost for
residential care
• Budget concerns often
focused on next cycle vs
long term
• ACA opens doors for
looking at the overall costs
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10. UMASS “MEDICAL HOME”
• Funding provided by
MA DDS for a pilot
program serving 18
individuals with
ID/ASD and severe
psych/beh problems
• Now serving 16 with
2 cases in start up
phase
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11. UMASS “MEDICAL HOME:
Who Is Served?
• Adolescents and adults
• referred from MA DDS
• ID/ASD but also have
sig. behavioral health
service needs
– At risk for costly
intrusive care
• Live near UMASS
Medical University
Campus
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12. Medical Home Service Elements
• Primary Care is at the core: Our Family Medicine
MD acts as PCP for all enrollees
• All patients have our Psychiatrist
• All patients have a clinician (psychologist,
behaviorist, OTR) as a Care Coordinator
• As needed, patients may have behavioral
consultation services, individual or group
psychotherapy
• We coordinate connections to other
subspecialties at UMass
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13. • STEP 1: Comprehensive multidisciplinary
evaluation
– UMass team works together to evaluate the patient
• Multidisciplinary assessment drives “Multi-
Modal” Treatment Plan
• “Start Date” = intakes with PCP and Psychiatry
• Care Coordinator (CC) is assigned
• CC helps with non-medical plan development,
FBAs, BSPs, data design and data analyses
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Medical Home Care Process

14. Why Comprehensive Multidisciplinary
Assessment is Key:
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15. ELEMENTS of a COMPREHENSIVE
MULTIDISCIPLINARY EVAL
• Extensive chart review
– Review of original studies when
possible ie MRIs, CTs, EEGs
– Review incident reports,
behavioral data
• Interview of informants
• Home visit in some cases
• Psychopathology Instruments
• Physical exam
• Office-neuro exam
• Psychiatric interview
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16. Medical Home Care Process
• The “Team” meets weekly
– “Rounds” on all Medical Home pts at least qo week
• Contacts daily on cases in need
– CC’s have co-attended ER visits
• Care Coordinators manage info flow between
the “community team”, family and Medical
Home Team.
• Community members invited to rounds.
• Care is highly coordinated and collaborative.
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17. MEDICAL HOME CARE
• Flexibility for longer or more freq appts
– Often we can see our patients faster than ER would
see them
• Some home visits by MDs when needed
– Nick – one of our first Med Home cases
• CCs attend medical and psych appts and ISP and
other key mtgs
• CC’s insure MDs get info needed to guide care
• CC’s help res and day staff develop alternatives
to ER use, PRN use and reinforce MD education
re care needs
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18. Insuring The “Tool Box” is Full…
• Care Coordinators on the UMASS team are
people with experience and skill in
Functional Behavioral Assessment (FBA)
and development of Positive Behavior
Support (PBS) plans.
• Even when we collaborate with teams
where there are behaviorists
– We offer help and support - promote use of
multiple modalities
– i.e. Speech and Occupational Therapy
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19. Care Coordinator
• Minimum weekly contact with caregivers
• Visits home weekly initially
– monthly or as needed (more often if needed,
whenever needed) over time.
• Gathers critical info re the patent’s status
• Works closely with the community
team/family to coordinate info flow between
core medical home team and community
team.
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20. MEDICAL HOME:
Evaluating the Model
• Baseline data on service use and levels of
challenging behaviors, health issues,
medications
• Re-assessment at 6 and 12 months
• Set individual Quality of Life goals
• Anticipate 1 year to change “culture” and
set tone, launch new approaches
– @ 2 years to have measureable impacts
• Track hours of unbilled services
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21. Clinical Goals/Outcome Measures
• < ABC (Aberrant Behavior Checklist) scores
• Reduce ER visits
• Reduce inpatient bed days
• Minimize need for emergency 1:1 staffing
• Prevent moves into more restrictive care settings
• Reduce reliance on medications to control
behavior
• Identify medication side effects and medical
problems and reduce medical morbidity
• Increase skills and opportunities
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22. SURVEY OF CAREGIVERS/FAMILY RE
SATISFACTION WITH MODEL**
Max Rating for High Level of Satisfaction = 26
**Informants asked about access to providers, communication between providers
and collaboration, communication to them about treatment.
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Care as Usual
Medical Home
0
5
10
15
20
25
30
CASE 1
CASE 2
CASE 3
18
11
14
26
26
25

23. LESSONS from 100s of Evals:
1. Aggression is a final common pathway for
distress – like a fever
– There is no single pill for aggression
2. Over-reliance on medications to control
behavior causes many problems
– Staff often ask for the medication, believe its needed
even with little data to support this
3. Missed medications side effects and medical –
the most significant factors in failed care
– What is “Medically Cleared?”
– Staff sometimes report medical issues as behavioral
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24. LESSONS from 100s of Evals:
4. Over-diagnosis of Psychiatric causes of difficulty are
common-labels stick!
– Psychiatric diagnostic overshadowing
5. Lack of serious commitment to teaching FC provokes
problems
6. Lack of meaningful engagement leads to great
difficulty
7. Failure to understand the impact of developmental
challenges leads to expectations set to high, not
enough support >>> looks psychiatric
8. We need to respect, listen to and take care of the
caregivers/family
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25. Aggression = Fever
• Not diagnostically specific
– MANY OF OUR PATIENTS HAVE A “LIMITED
BEHAVIORAL REPRTOIRE”
• When tired,…
• When upset about changes in routine….
• When unhappy about an interaction with a peer…
• When ill….
• When unable to communicate internal states of
distress..
• When there is a poor fit between needs and context
• NICK teaches us how critical this is, and his mother made
that possible
THE SAME SET OF symptoms of ALTERED
MOOD AND BEHAVIOR MAY BE manifested
for a different reason each time
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26. MEDICAL HOME for Pts with ID/ASD
and Psych D/Os: Core Values
• The WHOLE is > than the sum of the
parts
• No doc gods allowed
• Not just a room with different
disciplines in it
– We like working on problems together!
– No one feels he/she has a more
important role
• We treat people not their problems
• “The PROBLEM” often lies not IN the
person, but in the CONTEXT
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27. Non-psychiatric health problems among psychiatric inpatients
with Intellectual Disabilities.
Charlot, L., Abend, S., Ravin, P., Mastis, K., Hunt, A., & Deutsch, C.
Journal of Intellectual Disability Research doi:10.1111/j.1365-
2788.2010.01294.x
• We found a high rate of potentially treatable
and preventable medical problems and
medication side effects were likely causing
changes in these patients’ mood and
behavior resulting in expensive and
disruptive inpatient care or ineffective
attempts to reduce symptoms with
psychiatric treatment
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28. HEALTH PROBLEMS
Individuals with IDD/ASD…….
• Have higher rates of medical problems
• Have a High Rate of Unmet Health Needs
– Often lack access to appropriate and effective health care
• Beange, McElduff, & Baker, 2005; Cooper et al., 2004.
– Previously missed problems are found at high rates when
screens and health checks are
• Baxter et al., Cooper et al., 2006; Felce et al., 2008; Lennox et al.,
2007.
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29. Why do health problems get missed?
• Patients with ID often
have a limited capacity to
self-report medical
problems, side effects
and medical history
• At times, show high
tolerance for pain
• Caregivers under-report
pt’s pain
• Caregivers report
hypotheses v
observations
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30. In the Medical Home:
We “Round-Up the Usual Suspects”
• Constipation
• GERD
• Dental pain
• Sedation
• Akathisia
• EPS
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31. Multidrug Treatment
– Use of complex multidrug
regimens may cause a
cascade of troubles in
patients with ID/ASD who
have a fragile neurological
and physical substrate
– Reliance on medications
increases where other
options are harder to
implement
– Alarming national trends
charlot
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32. COMMON CAUSES of Diagnostic
Errors
• “Psychiatric
diagnostic
overshadowing”
• Missing effects of
developmental and
cognitive challenges
• Under-estimating
impact of
psychosocial stress
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33. SUMMARY
Highlights of Medical Home
• Increased costs over care as usual
– recovered via decreased use of:
• expensive placements (facility care)
• expensive forms of medical care (ER, inpatient)
• reduced reliance on complex multi-drug treatment - -
reduced long-term Adverse Drug Events
• Improved QOL, and behavioral outcomes
• Focus on prevention, building skills,
opportunities and really being certain health
issues are addressed
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34. Making it Work….
• Education and support
• “Culture” Change is the hardest component
• Help caregivers develop skills, access tools to
reduce reliance on restrictive and reactive care
strategies
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35. BEST Crisis Intervention:
Prevent Crises
• Reduce ER Use
• Develop close
collaborations with
nursing and residential
staff, other caregivers
to prevent issues that
cause ER use
• Facilitate rapid
response for outpt
appts
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36. Overcome Barriers
• Promoting
multidisciplinary,
“Collaborative Care”
• Taking advantage of
changes in models of
healthcare delivery
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37. TEACH SKILLS & REMOVE BARRIERS
• “Experiences that increase…
exposure to success can bolster self-
confidence and determination,
leading to better performance. In
these cases, the ‘treatment’ …..
involves education and training
regimens that encourage full use of
individual potential by removing
psychological barriers.”
Ziegler, E. (1993) Editorial: Can We
"Cure" Mild Mental Retardation among
Individuals in the Lower Socioeconomic
Stratum? American Journal of Public
Health 85(3), pp 302-304
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38. Reduce High Cost Forms of Care:
For Our Patients
– Not the best care
• One of the drivers of high health care costs in
the United States is the use of emergency rooms
(ER) for preventable conditions by patients who
generally come from the most vulnerable
populations. Estimated to cost as much as $30.8
billion a year in a recent Health Affairs study,
avoidable ER use is a primary target for experts
seeking to reduce health care costs.
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39. Sam
• Given Suzie’s medications
• New as a Medical Home case
• RN insisted on patient being seen at ER
• Dr. Silka assures them, Sam will be fine
– His medications are almost the same as Suzie’s!
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40. Sam
• Our Medical Home team Care Coordinator goes to the
ER with Sam and his guardian, GM
• Sam had been doing great in his new placement!
(Better than expected)
• Staff from residence do not know him well yet
• ER Triage immediately shows no acute issues, he has
to wait
• His GM’s anxiety, the loud crowded ER, change in
routine (no day program today), LONG WAIT causes
Sam to become agitated
• ER attending thinks Sam needs a psychiatric
screening!
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41. What Happened at the ER?
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42. FIRST LESSONS
• ER’s are not the safest option in many situations
– Care from your familiar, informed and experienced
doctors may be much safer
• CHANGE TAKES TIME
– Teach caregivers how we can help
– Develop trust
• The changes we are promoting are more in the
system surrounding the patient, vs inside the
patient…
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