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UMASS Intellectual Disabilities Mental Health Services
Laurie Charlot, LICSW, PhD Dir Intellectual Disabilities Services Assistant Prof, Dept of Psychiatry UMass Medical Center 55 Lake Ave North Worcester, Ma 01655 508-334-6693 FAX 508-856-3595 [email protected]
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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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GOALS
• Describe the UMASS Medical Home Model
• Discuss risk issues that cause individuals with IDD to require specialized help
• Advantages of a Medical Home for patients with IDD/MH and complex needs
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Lessons we learned, sometimes the hard way….
“To err is human, but it feels divine…”
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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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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 have to be Health Care Managers
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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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Working Smarter not Harder: Goals of the UMass Medical Home Pilot
• Provide multidisciplinary specialist care with coordination
• Improve behavioral and health outcomes • Create a replicable model “manualize” • Demonstrate that this form of care does not
cost more or saves healthcare dollars
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• 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
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Pay Now..Pay Later You Pay or I Pay
Mostly..Patients and Family Pay
• In many cases, the cost for ER, Inpatient care comes from a different place than cost for residential care and even for outpatient care
• Budget concerns often focused on the next cycle versus long term
• ACA opens doors for looking at the overall costs
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Reduce High Cost Forms of Care: For Our Patients
– Not the best care Neither…
• 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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Sam
• Given Suzie’s medications • New as a Medical Home case • RN insisted on patient being seen at ER,
despite our rapid response • Dr. Silka assures them, Sam will be fine
– His medications are almost the same as Suzie’s! – However, Sam will not get pregnant
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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 hardly know him • 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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What Happened at the ER?
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In What Situations Is ER Use Highest?
• A. Where patient has the most dangerous and acute problems
• B. Where there are less on site medically trained staff
• C. Where we have not been able to enroll person in full Medical Home service
• D. Where on site RNs decide if ER is needed
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FIRST LESSONS
• 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…
• Often, Less is MORE! • ER’s are not the safest option in many situations • Care from your familiar, informed and
experienced doctors may be much safer
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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 14 with 4 cases about to enroll
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UMASS “MEDICAL HOME: Who Is Served?
• All pts referred from MA DDS
• Adolescents and adults • ID/ASD but also have
sig. behavioral health service needs
• Live near UMASS Medical University Campus
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RISK FACTORS
• History of multiple ER visits in the past 12 months
• History of inpatient psychiatric admission past 12 months
• Treatment with multiple psychoactive medications (3 or more)
• Multiple or significant medical-neurological conditions
• Need for facility based care dt severe MH/Beh Issues
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• 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
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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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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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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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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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• Medical Home team fills in gaps in the non-medical intervention areas – Insure these are
maximized – This is the main
pathway to reduced reliance on drugs to manage behavior
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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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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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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
• Care Coordinator provides assurances of close collaboration
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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 • Increase skills and opportunities
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BASELINE & OUTCOME DATA for SERVICE Utilization DATA/SCORES
Survey of Family/Guardians/Caregivers re Satisfaction w model Rating pre-post
Outcomes Questionnaire:
Freq ED visits Pre-6 mos-1 yr
Freq inpatient medical bed days Pre-6 mos-1 yr
Freq inpatient psychiatric bed days Pre-6 mos-1 yr
Freq days of needing 1:1 acutely dt behavior Pre-6 mos-1 yr
Need to move dt beh (to > restrictive setting) Pre-6 mos-1 yr
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BASELINE & CLINICAL OUTCOME DATA SOURCE REPEAT DATA/SCORES
Aberrant Behavior Checklist (ABC) 6 MOS Subscales and Total Scale
Recent Stressors Questionnaire 12 MOS Total # Stressors
Individual Quality of Life Goals 12 MOS Met, Partially Met, Not Met
Mood and Anxiety Symptoms Survey 12 MOS Note diagnostic changes
SMASH & MEDS 12 MOS Note symptoms
Was Psych Diagnosis Changed? 12 MOS Total # List
New medical diagnoses or Rx 12 MOS Total # List
# psych. drugs and drug reductions 12 MOS Freq of meds, reductions
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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
05
10
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CASE 1
CASE 2
CASE 3
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11 14
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LESSONS from 100s of Evals:
1. Aggression is a final common pathway for distress – 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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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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CORE VALUES
• We share values – basic tenets (lessons) • Some “teams” have multiple disciplines,
operating separately in parallel • We assess together and plan together • Mutual respect and sincere concern that all
parties play a role of equal value and importance
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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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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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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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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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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, may evidence a high tolerance for pain
• Caregivers under-report pt’s pain
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In the Medical Home: We “Round-Up the Usual Suspects”
• Constipation • GERD • Dental pain • Sedation • Akathisia • EPS
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Multidrug Treatment
– Use of complex multidrug regimens may cause a cascade of troubles in patients with ID who have a fragile neurological and physical substrate
– Reliance on medications increases where other options are harder to implement
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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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SUMMARY
• Highlights of Medical Home • Increased costs over care as usual expected to
be recovered via decreased use of expensive placements (facility care), expensive forms of medical care (ER, inpatient)
• Improved QOL, and behavioral outcomes • Focus is on prevention, building skills,
opportunities and really being certain health issues are addressed
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Teaching Caregivers: We have to be like …….
• One Role of the Care Coordinator
• Teach caregivers to be alert for alterations in eating, fluid intake, bowel and bladder patterns, gait, level of alertness, swallowing or chewing food, or development of unusual movements
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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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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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Overcome Barriers
• Promoting multidisciplinary, “Collaborative Care”
• Taking advantage of changes in models of healthcare delivery
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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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Why Comprehensive Multidisciplinary Assessment is Key:
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