04/09/2023

UMASS Intellectual Disabilities Mental Health Services

Laurie Charlot, LICSW, PhDDir Intellectual Disabilities ServicesAssistant Prof, Dept of PsychiatryUMass Medical Center328 Shrewsbury StreetWorcester, Ma 01655508-334-6693FAX 508-856-3595charlotl@ummhc.org

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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 ID/ASD to require specialized help

• Advantages of a Medical Home for patients with ID/ASD & MH - complex needs

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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 are 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 this form of care costs same or

less– Longer term, lower costs due to reduced morbidity

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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 LaterYou 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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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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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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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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• 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

Medical Home Care Process

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Why Comprehensive Multidisciplinary Assessment is Key:

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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 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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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

• Track hours of unbilled servicescharlot,

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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 and reduce medical morbidity• Increase skills and opportunities

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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.

CASE 1

CASE 2

CASE 3

0

5

10

15

20

25

30

Care as Usual

Medical Home

18

1114

26

26

25

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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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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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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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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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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 PROBLEMSIndividuals 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, show high tolerance for pain• Caregivers under-report pt’s pain• Caregivers report hypotheses v observations

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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/ASD who have a fragile neurological and physical substrate

– Reliance on medications increases where other options are harder to implement

– Alarming national trends

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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 – 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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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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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 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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What Happened at the ER?

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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…