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UMASS Intellectual Disabilities Mental Health

Medical Home Project

Laurie Charlot, LICSW, PhD Clinical Dir. NC START East New Bern, NC Assistant Professor, UMASS Medical School Clinical Consultation and Training CharlotLR@outlook.com

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UMass Multidisciplinary IDD/MH Team: The Medical Home Team

•  Laurie Charlot, PhD –  Developmental

Psychologist –  Consultant

•  Paula Ravin, MD –  Neurologist –  Movement Disorders

Specialist •  Bob Baldor, MD

–  Primary Care –  Family Medicine

•  Van Silka, MD •  Psychiatrist

•  Mary Crane, BA – Behaviorist

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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….

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 – DEMONSTRATE with outcome measures

•  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

•  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 •  Dr. Silka assures them, Sam will be fine

– His medications are almost the same as Suzie’s!

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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 do not know him well •  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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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 12 with 2 cases in start up phase

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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

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

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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 •  Anticipated 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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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), reduced reliance on complex multi-drug treatment, reduced long-term Adverse Drug Events

•  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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REDUCED HOSPITAL BED DAYS

•  No psychiatric admissions •  N = 15 for who data from year prior

could be obtained – Pro-rated to contrast equal time period

•  252 hospital bed days year prior •  75 hospital bed days post enrollment

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Reduced ED Visits

•  Compared n = 15 •  Pre to most recent 6 months •  Estimated ED visit cost at about 2K per

visit •  Approximate cost savings = 20K for

this small number in short time frame

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ABERRANT BEHAVIOR CHECKLIST SCORES

•  N = 18 •  Varied start dates over 1.5 years of

enrolling cases •  Used baseline ABC, contrasted with

most recent •  Mean 31% reductions in total scale

scores, 36% reduction in Irritability Subscale Scores

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Psychiatric Diagnoses •  Based on comprehensive multidisciplinary

assessment •  60% of cases > changed the primary diagnoses •  Examples: •  60% had ASD, 2 formerly unrecognized •  Bipolar Disorder removed in 4 cases •  Psychosis nos removed in 5 cases •  Removed diagnoses of somatoform disorder

and dementia •  MASS dc agreement = 85%

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Maintain Placements: Prevent Higher Cost Restrictive Settings

•  Case 1 >- was about to lose shared living (move to group residence)

•  Case 2 > was going to be referred to nursing home level care (remained in group residence)

•  N = 6 - dc’d from institutional care with h/o of multiple failed community placement attempts and –  all successful after 1 year for first time

•  1 Transition age youth with ASD successful for 2 yrs after long term residential school placement

•  2 individuals – staffing for CBs reduced

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Reducing Psychoactive Medications

•  Mean 3.5 psych meds per person at intake

•  5 people were taking > 1 antipsychotic •  16 of 18 people had significant med

reductions and eliminations •  All had no change or improvement

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Desensitization to Medical Care and Caregiver Education

•  N = 5 - significant progress noted in tolerating medical care

•  Multiple specialized training sessions and individual meetings with MH Team MDs to educate caregivers re health issues, – neurological problems, medication effects

and syndromes (i.e. FRA-X)

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Previously Missed or Under-treated Medical Problems and Medication Side Effects

•  MEDICAL PROBLES AND SIDE EFFECTS –  Multiple patients with constipation, GERD –  Diabetes Insipidus, –  Parkinson’s Disease, –  Urinary retention –  Anti-convulsant drug interactions causing falls and delirium –  Cataracts, –  Hernias –  Recurrences of urinary tract infections –  Psoriatic arthritis –  Multiple cases of drug-induced extrapyramidal syndromes

•  Increased detection of these problems and then more aggressive work-ups and resulting changes to treatment are gradually resulting in a variety of improvements to patient’s health and behavior.

•  These are likely reflected in our findings of substantial reductions in some ABC scores, individual target behaviors being tracked and reduced ER visits

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Satisfaction Survey - Max = 26

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0

5

10

15

20

25

PRE POST

17

25

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SATISFACTION REMARKS – FAMILY/GUARDIANS

“Karen and I are so pleased with the caring and compassion that this team has shown to our sister and her family.” “It has been great for B.”

“Absolutely wonderful-he is a new person.”

“In 20 years of caring for a child with complicated medical and mental health needs, we have never experienced the levels of coordinated, quality care as we have since joining this program. We feel that our son’s anticipated outcome to being a patient here is years beyond what we could have expected without it. His mental and physical health is being attended to with such energy and focus that we expect his quality of life to vastly improve (and most importantly) be sustained. “

“very pleased with communication. Everybody on the same page. All know what is going on.”

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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: Outcomes

•  Reduced ER Use •  Reduced inpt bed days •  Reduced medications •  Improved x ABC scale

scores •  Developed close

collaborations with nursing and residential staff, other caregivers to prevent issues that cause ER use

•  Facilitated rapid response for outpt appts

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Overcome Barriers •  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 and Care is Key:

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