Community MH Crisis Prevention and Intervention Model for Persons with Intellectual

and Developmental Disabilities

What is START?

• The START Model provides prevention and intervention services to individuals with developmental disabilities and complex behavioral needs through crisis response, training, consultation, and respite. The goal is to create a support network that is able to respond to crisis needs at the community level. Providing supports that enable an individual to remain in their home or community placement is the first priority.

 • START does not replace existing services in the community. START

provides training and technical assistance to enhance the ability of the community to support individuals with DD and co-occurring mental illness/complex behavioral needs.

Role of START

• Provide support and technical assistance to community MH crisis and intervention supports

• Create and maintain linkages and relationships with community partners

• Coordinate support meetings and cross systems crisis plans for individuals

• Provide on-going consultation to providers and/or families• Provide training and technical assistance to community

partners• Provide short-term respite – both emergency and planned

History

• START Model was recommended by the DD-PIC to the Division of MH/DD/SA

• START Model was presented to the Legislative Oversight Committee in February 2008

• Funds were appropriated for community based crisis

• Division held a training with Joan Beasley on START for eligible providers and LME’s

• Two providers were designated to implement this community based model

Durham

Orange

Chatham

Wake

Lee

Johnston

New Han

Pender

Onslow

Columbus

Robeson

Moore

Harnett

HokeCumberland

Bladen

Sampson DuplinJones

LenoirCraven

Carteret

Greene

Pitt

Wayne

Edgecombe

Wilson

MartinNash

Franklin

Halifax

Warren

Northampton

Bertie

Hertford

Gates

Vance

Gran-ville

PersonCaswell

Forsyth

StokesSurry RockinghamAsheAlleg.

WilkesYadkin

Davidson

Alex.Caldwell

Avery

Watauga

Rowan

Davie

Iredell

Randolph

Guilford

Jackson

AnsonUnion

Meck.Stanly

Cabarrus

Alam.

Mont-gomery

Richmond

Scotland

Cleveland

BurkeCatawba

Lincoln

Gaston

MaconClay

Haywood

Cherokee

Madison

BuncombeMcDowell

RutherfordGraham

Swain

Henderson

Trans

Polk

Perquiman

s

CurrituckPasquotan

k

Dare

Camden

Chow

an

Hyde

TyrrellWash.

Beaufort

Yancey

Mitch

Brunswick

Pamlico

NC-START - WEST

NC-START -CENTRAL

NC-START - EAST

Planned Structure per Region Based on Gap Analysis

Current Structure per Region

Who is eligible for NC START?

• Individual has confirmed developmental disability and is eighteen years of age or older

• Individual has significant behavioral challenges and/or a co-occurring mental illness

• Individual demonstrates significant behavioral challenges that require further psychological and/or psychiatric intervention

• Current treatment attempts are unsuccessful• Prior to full admission, case manager/care

coordinator is identified and participating

IDD and Mental Illness

• Psychiatric disorders in persons with IDD are common but often not appropriately identified

• Determining accurate psychiatric diagnosis becomes especially difficult as the level of intellectual functioning declines

• As many as one third of people with IDD have significant behavioral, mental, or personality disorders requiring mental health services

• Beware of “diagnostic overshadowing” – psychopathology overlooked because it is attributed to ID (withdrawal, aggression, manic behavior)

IDD and Mental Illness Dual Diagnosis – defined as a person who has both an

intellectual disability and a psychiatric (mental) disorder Psychiatric disorders in persons with IDD are common

but often not appropriately identified As many as one third of people with IDD have

significant behavioral, mental, or personality disorders requiring mental health services

Determining accurate psychiatric diagnosis becomes especially difficult as the level of intellectual functioning declines› Individuals with mild ID more often get diagnosed with

psychiatric disorders while individuals with severe/profound ID are diagnosed with behavioral problems

Main Reasons Identified (Presenting Problems) when People with ID/ASD are referred for mental

health services:• AGGRESSION

– To self– To others– To property

• Highly Disruptive or destructive behavior

• People with IDD rarely self-refer for mental health help

11Charlot, 2014

• 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….

THE SAME SET OF symptoms of ALTERED MOOD AND BEHAVIOR MAY BE manifested for a different reason each time

12Charlot, 2014

Aggression is like a “fever”

• Most common disorders are mood and anxiety disorders

• Bipolar Disorder and Psychosis are less common, but very severe when they occur

• Children often have symptoms of ADHD• Diagnosis is more challenging• Many individuals have Mental health

service needs, even without Axis 1 conditions

13Charlot, 2014

Why might misdiagnoses occur?

• Many individuals with IDD are unable to adequately describe their mood or cognitive states due to limited expressive language or cognitive disorganization in response to environmental stressors

• Some are unable to provide useful information or fully understand the process of the psychiatric examination

• A failure to consider the contribution of a medical/neurological illness or medication side effect can also lead to the misdiagnosis of serious neurological disorders (e.g. delirium) as a mental illness

Diagnostic Overshadowing Diagnostic overshadowing refers to the process of over-

attributing an individual’s symptoms to a particular condition, resulting in key co-morbid conditions being undiagnosed and untreated

It was originally described in people with developmental disabilities, where their psychiatric symptoms and behaviors were falsely attributed to their disability, leaving any comorbid psychiatric illness undiagnosed

Research has shown that comorbid medical conditions are often “diagnostically overshadowed” by the presence of a prior psychiatric disorder or developmental disability diagnosis› For example: A doctor in the hospital assessment unit says (of

John) rubbing his head, “It may be a pattern of behavior as a result of his disability.” In other words, he interprets John's head-rubbing as being symptomatic of his developmental disability and doesn’t investigate it further when it could be an important indicator of John’s medical condition

Other factors that might affect diagnosis

Intellectual distortion› Emotional symptoms are difficult to elicit

because of deficits in abstract thinking and in receptive/expressive language skills- individual cannot accurately understand the question

› Questions are too complex and answers often meaningless

› “Do you hear voices when no one is there?”

› “Do you take drugs? Do you drink?”

Psychosocial masking› Symptomology occurs within a developmental

framework (e.g., mania presenting as a belief that one can drive a car)

› A delusion of being the chief of police may be mistaken for a harmless fantasy

› An imaginary friend may be mistaken for a delusion

Cognitive disintegration› Lack of “cognitive reserve” - Decreased

ability to tolerate stress, leading to anxiety-induced decompensation under stress (lose skills, become mute, etc.)

› Sometimes misinterpreted as psychosis, bipolar disorder, or dementia

Baseline exaggeration› Increase in the severity or frequency of

chronic maladaptive behavior after onset of psychiatric illness

› Challenging behavior that exists at a low rate and low intensity may increase dramatically under stress or when there is a mental health issue

› Often the behavior becomes the focus when it is a sign or symptom

Essential Components

LinkagesExpertise, trainingFamily support and educationPlanned and emergency therapeutic resources (respite

services)Crisis ResponseCross-systems crisis prevention and intervention

planningEmploys evidence-informed practices and outcome

measures (advisory council, clinical team, data analysis)Learning communities, local, regional, statewide,

national

Numbers Benefitting from Intervention

Effective Strategies ‘Changing the odds’

Accurate Response‘Facing

the odds’

Improved Supports‘Beating the odds’

Potential impact of

intervention

Required intensity of intervention

System gap analyses, work force development and identification of risk factors

Primary Intervention: Improved access to services, treatment planning, integration of health and wellness, and development of service linkages

 

Secondary Intervention: Identification of individual/family stressors, crisis

planning/prevention, respite services,medication monitoring and crisis

intervention services 

Tertiary Intervention: Emergency room services, hospitalizations and law

enforcement interventions

 

Core Principles

• Positive Psychology

• Trauma Informed Approach

• Systemic Approach

Outcomes

• Maintain stable community residence• Access and engage resources• Decrease behavioral challenges• Decrease mental health symptoms• Decrease state facility and hospital utilization• Increase community involvement• Increase crisis expertise in community• Implement and maintain community partnerships

Caseloads

• -From 2011-2012 START had an 18% increase in caseload with another 18% increase from 2012-2013. From 2013 through the first quarter of FY14 there was an increase of 15%.

• -Overall, since 2010 the teams have seen a 41% increase in caseloads

• Caseloads in the Central region have exceeded 50. The West is approaching this number also. START Model is based on 25-30 cases per coordinator.

From the data

• Average age – early 20’s• Psychiatric and medical complexity• Approximately half have mild ID• Increase in referrals from ED (most recent

quarter 37%)• Disposition for large majority of referrals

continues to be avoiding higher level of care and higher costs.(around 70% maintain current setting).

• Current active caseload is 560 with the average caseload per coordinator at about 46.

• Most individuals served (67%) are Medicaid/non-Innovations recipients with limited services and supports.

• Approximately 50 individuals were denied NC START services in the Central region due to capacity issues this most recent quarter.

Recent Quarter Data• Over 500 people supported • 130 respite admissions: ALOS for planned - 4 days; and crisis

respite at – 21 days.• The number of denied respite requests has risen steadily this fiscal

year with the current quarter reflecting 101. 53, or half, of all denials were due to the homes being at capacity. An additional 13 had no return address.

• 1814 hours of planned services (cross system crisis planning development, intake assessments, family support, and transition planning with our developmental centers and state hospitals).

• 140 hours of training was provided to the system including training to MCO staff, providers, family members, and police or emergency response. This is the prevention work that the teams should focus on; but due to limited resources are unable to do so.

TrendsFY 2010 FY 2011 FY 2012 FY2013 FY 2014

(est)

# Served 394 340 402 474 600

Funding Medicaid Non-waiver

52% 56% 64% 63% 67%

Predominant Referral Source

Clinical Home/Case Mgmt

Clinical Home/Case Mgmt

Clinical Home/Case Mgmt

Hospital ED 35%

Hospital ED

Referrals from ED

87 207 231 383

Hours of training

1085 1057 1211 802 Less than half of previous year

On-going Support to System• Teams continue to support EDs, providers, and MCOs; and prevent

unnecessary more intensive services

• CET – Clinical Education Team – case presentations and training in a community forum

• Quarterly regional Advisory Council meetings

• Transition planning supports to developmental centers for individuals transitioning to the community.

• Clinical collaborative meetings with state hospitals on a monthly basis to collaborate on the treatment needs and planning, including discharge planning, for individuals with an intellectual/developmental disability (IDD) in the state hospital.