Joan B. Beasley, PhDrwjms.rutgers.edu/.../documents/...17-19packet.pdf · Joan B. Beasley, PhD...

Rutgers, The State University of New Jersey Liberty Plaza, 335 George Street, New Brunswick, NJ 08901

rwjms.rutgers.edu/boggscenter p. 732-235-9300 f. 732-235-9330

Joan B. Beasley, PhD Research Associate Professor

Director, Center for START Services Institute on Disability, University of New Hampshire

Concord, NH

Addressing the Mental Health Needs of Individuals with IDD and Their Families: The START Crisis Prevention

and Intervention Program

September 27, 2019 APA Hotel Woodbridge, Iselin, NJ

The attached handouts are provided as part of The Boggs Center’s continuing education and dissemination activities. Please note that these items are reprinted by permission from the author. If you desire to reproduce them, please obtain permission from the originator.

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Institute on Disability/UCED, University of New Hampshire Joan B. Beasley, Ph.D.© 2019 Center for START Services All Rights Reserved© 2019 Center for START Services All Rights Reserved

The Center for START Services is a program of the University of New Hampshire Institute on Disability/UCED

www.centerforstartservices.org

Joan B. Beasley, Ph.D.Research Associate ProfessorUniversity of New Hampshire Institute on Disability

Addressing the Mental Health Needs of Individuals with IDD and Their Families: The START Crisis Prevention and Intervention Program

Institute on Disability/UCED, University of New Hampshire Joan B. Beasley, Ph.D.© 2019 Center for START Services All Rights Reserved

The Importance of Listening

"Time after time, I have found that when people are taken seriously, when they are respected, when their behavior is interpreted, understood and responded to accurately, when they are engaged in mutual dialogue rather than subjected to unilateral schemes of 'behavior management,' somehow as if miraculously, they become more ordinary. I know a number of people who have had severe reputations who have shed them when those supporting them listened more carefully."

- Herb Lovett, Ph.D.


Lets review what we have learned

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IDD and Mental Health Conditions• Across the United States approximately 1.5% to 2.5% of the population has

an intellectual developmental disorder (IDD).

• The (DSM5) defines IDD as a disability that involves impairments of general mental abilities that impact adaptive functioning in three domains, or areas.

• These domains determine how well an individual copes with everyday tasks.

• Epidemiological studies have established that the incidence and prevalence of mental health conditions for people with IDD is typically 2 to 3 times that of the general population

• and that these mental health conditions often contribute to challenging behavior. For people with IDD, aggression and self-injurious behavior are two of the most common reasons for referrals for mental health services.


Barriers in IDD system

• "Troublesome" behaviors considered unacceptable in many support and service venues

• The last and least served

• Continued concept of “primary” vs. “secondary” disorders: were not trained in MH or health practices that could contribute to challenging behavior were sent to be “fixed”


Barriers in the MH System

• Stigma

• Much more likely to use emergency services

• Lack of training (diagnostic overshadowing)

• Lack of expertise

• Medication issues

• Believed that challenging behavior was a result of developmental issues

alone

• “Did not have the IQ for depression”

• Primary vs. secondary diagnosis instead of presenting issue

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The "START" model:

• First developed in 1988, and still learning

• KEY: Partnerships that Enrich the system

• Nationally recognized

• Let’s discuss our values



• PLCs• Professional practice improvement groups• Coaching• Technical Support: office hours• Certification (coordinators and program)• National Online Training Series• Certification Course• Fidelity Guides• START Curricula MH/IDD training lifespan • CETs• START National Training Institute

UNH/IOD Center for START Services: Building capacity and evidence based

practices

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Fidelity –provide training and consultation to support the integrity of activities that make the START Model effective and directly impact the success of desired outcomes. The START model is not a just a compilation of what is known in the field, it is a community of practice with very specific methods and validated tools



START method:A Crisis is a Problem without the Tools to

Address it• We are a tertiary care crisis intervention model• The importance of a safety net • The tools to discovering the strength in all of us• The tools to cross systems collaboration• The tools to understand and collaborate in times of

difficulty• The tools to promote wellness and well being • It is not about the pill or the plan it is about the person and

their strength of character

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Wellness Based - The World Health Organization defines wellness as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmary.

https://www.samhsa.gov/wellness-initiative/eight-dimensions-wellness


START Approaches

Each of the approaches used and endorsed by the START model are effective best practices. Because they are interrelated, outcomes are strongest when they are combined and used across all aspects of START service delivery.


START ApproachesStrengths-Based practice builds on the positive psychology premise that all people have inherent strengths and skills that promote resiliency and resourcefulness in the face of challenges.

Cultural and Linguistic competency: Incorporated into person & family-centered approach to planning and service delivery fostering mutual respect, seeking a common understanding, shared experiences and partnerships between service providers and individuals and families receiving services.

Leadership and dialogue employing Systemic Consultation - The START model conceptualizes presenting solutions to problems within the context of the system in which the person lives, works, and interacts with their environment.

Bio-psycho- social integrated health approach to wellness and well being: comprehensive rigorous standards for assessment and treatment, continuous learning.

Crisis prevention and intervention planning and response across system of support to ensure effective and strength based interventions, collaboration and cooperation and timely response in time of difficulty

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Promoting service Effectiveness:The 3 A’s (Beasley)

Access(timely, available)

Appropriateness (matches real needs, provides tools)

Accountability (responsiveness, engaging, flexible, creative)

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Five Elements of Cultural Competence

1•Acknowledge cultural differences

2•Understand your own culture

3•Engage in self‐assessment

4•Acquire cultural knowledge & skills

5•View behavior within a cultural context

Individual Level(START team members)

1•Value diversity

2•Conduct self‐assessment

3•Manage the dynamics of difference

4•Embed/institutionalize cultural knowledge

5•Adapt to diversity (values, policies, structures, services)

Organizational Level(Center for START Services & Regional START Programs)

Adapted from Cross, Baron, Dennis and Isaacs, 1989.

Used with permission of the Georgetown University National Center for Cultural Competence 2018.


We all must work togetherNetworking:

Synergy and Linkages(Buckminster Fuller)

• A dynamic state in which combined action is favored over the difference of individual component actions.

• Behavior of whole systems unpredicted by the behavior of their parts taken separately, known as emergent behavior

• The cooperative action of two or more stimuli, resulting in a different or greater response than that of the individual stimuli.

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The Benefits of LinkagesSynergy: 1. Mutually comparable combined action or operation. 2. The interaction of elements that when combined produce a

total effect where the sum is greater than its parts.



We perform best through our collective intelligence

“As long as everyone got a chance to talk, the team did well. But if only one person or a small group spoke all the time, the collective intelligence declined”

- NYT Magazine “The Work Issue” 2/28/16

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Therapeutic Resources & Services

• Emergency Beds• Planned Beds• Therapeutic Activities• Autism Services• Positive Psychology• Sensory Activities• In-Home Therapeutic Services• 24-Hour Crisis Response

Linkages

• State/local stakeholders• Residential• Schools• Inpatient• Outpatient• Respite• Day• Natural Supports

24-Hour Crisis Response

• Mobile Mental Health Crisis Teams

• Hospital Emergency Rooms• Police• Other First Responders

Advisory Committee

• Director (master's or above)• Clinical Director (Psychologist or equivalent)• Medical Director (Psychiatrist or APRN)• Certified START Coordinators• Team Leader

The Center for START Services

• Customized Coaching• Technical Support• Certification of START Coordinators• National Online Training Series• Online Certification Course for START

Teams• National Database• Fidelity Guides• START Curricula

START Regional Team Services

Clinical Services

• Neurology• OT• Forensic Psychology• Nursing• Dentistry• Family Supports

Training and Consultation

• Didactic Training• Eco-mapping and systems support• Crisis prevention and intervention planning• Emotional Intelligence training


START Coordination(Beasley, 1988)

• Receive 60 hours of didactic training and supervision in national educational forums

• Certification renewed every two years• Systems linkage approach• Trained leaders in the field• Provide assessment, consultation • Trained trainers • CET and CSE development • All members of the clinical team are certified START

coordinators except for MD


START Practices (specialized methods)

• The START Network is a group of individuals with a common repertoire of knowledge about the ways of addressing similar (and often shared) problems and purposes.

• This collective practice is made accessible to newcomers through the START training forums: activities through which individuals develop ways of thinking and reframing their views.

• The apprenticeship of START coordinators is aimed to reproduce practices through which the next generation START coordinators is developed. We need to teach coordinators to act like START coordinators.

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START Assessments and Training ( Center for START Services UNH/IOD)

• Certified Coordinators• Access to experts• Multimodal consult teams• CETs, START Plans, CSCPs, CSEs, SIRS, Systemic analysis• Practice Groups across the country• PLCs• START Therapeutic Services:

o In-Home Therapeutic Coaching trainingo START Resource Centers counselor training and methods


START Model Program Service24-hour Community-Based Crisis Response

• Integrated into the overall system, use a multidisciplinary team approach, and be able to communicate effectively; Working with inpatient units, mobile crisis teams, emergency rooms

• Crisis Evaluation, Prevention, Intervention, and Stabilization: START Center

• 24-hour access to care providers for assistance

• Discharge planning meetings within 24 hours with START Coordinators linked with in-home services, inpatient and START Resource Centers

• Use the specified tools of START model; validated and researched instruments


What is the Goal?

The challenge for START coordinators is to become professionals that help to solve problems with no easy answers and that requires judgment and discretion.

START fidelity requirements are aimed to frame a language to define START for new members to become acculturated and internalize the conventions of participation.

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Cultural and Linguistic Competency

• We all have multiple cultural identities (including the system in which we reside)

• Language and words matter • They are all layered in differing ways due to our experiences• Different conditions draw on these layers• These are key to understand for START programs to help

lead the way to positive change


Training for Creative Thinking, Collaboration, and Complex

Problem Solving

• Coordinators must be prepared to work in complex and uncertain contexts that demand autonomy, judgment, and the ability to solve problems in action on the spot.

• Innovation and creative thinking are critical skills.


Teaching START Practices developed and implemented by CSS

• START coordinators are encouraged to make the link between knowing and doing through practice and reflective processing. This is the intent of our methods professional practicum (through practice groups, live supervision, apprenticeship, and coaching).

• While providing the needed didactic information, we are implementing an alternative model of teaching to incorporate START practices and acculturation into training forums in order to create more independent and creative coordinators.

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Evidence-Informedpractice is a model that incorporates the best available research and ongoing evaluation and assessment to inform interventions.

Evidence informed practice


Reflective Inquiry and Assessment

"If I had an hour to solve a problem I would spend 55 minutes thinking about the problem

and 5 minutes thinking about the solution."

- Einstein


Bio-Psycho-Social approach (Engel, 1979) considers the biological, psychological and social strengths and vulnerabilities related to mental wellness and how these different factors might contribute and impact one another.

Engel, G. (1979). The biopsychosocial model and the education of health professionals. General Hospital Psychiatry, 1(2), pp.156-165.

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START with Positive Thinking

• We have a choice about how we view something• We can change how we as a group think and feel about

what we see• We can cultivate sustainable positive feelings about

ourselves and our network• We can create and inspire that in others through this

approach


Why a Positive Psychology approach?

“We believe that persons who carry even the weightiest psychological burdens care about much

more in their lives than just the relief of their suffering. Troubled persons want more satisfaction,

contentment, and joy, not just less sadness and worry.”

- Duckworth, Steen, & Seligman, 2005

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Lee Duckworth, A., Steen, T. A., & Seligman, M. E. (2005). Positive psychology in clinical practice. Annu. Rev. Clin. Psychol., 1, 629-651.


Positive Psychology

• Shift in perception, reframe and refocus• There is more than one way to view a situation• Optimism can be taught• If you practice these skills you will be more effective in all

elements in your life• If you use these practices with teams, it will have an impact

on everyone connected to you

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START24 hour Community-Based Crisis Response

• Integrated into the overall system, use a multidisciplinary team approach, and be able to communicate effectively; Working with inpatient units, mobile crisis teams, emergency rooms

• Crisis Evaluation, Prevention, Intervention, and Stabilization: START Center

• 24 hour access to care providers for assistance

• Discharge planning meetings within 24 hours with START Coordinators linked with in-home services, inpatient and START Resource Centers


In-Home Therapeutic Coaching (Planned)

• Part of follow-up to prevent the need for crisis services• Skill building for provider• Outreach with START Coordinator to monitor and modify

plans as needed• Support to implement PBSP and other plans• Transitional support after hospital or Center stay• Training and consultation provided• Two to four hours a week• Can be scheduled to occur on a regular basis as identified in

the START plan


The START Resource Center (2 beds)Crisis Stabilization and Assessment

(Up to 30 Days)• Safe environment• Linkages and collaboration/system’s support• Diagnostic clarification• Medication review• Psychological and social review• Assessment of problem• Structured programming• Hospital diversion, prevention

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START Resource Center Planned Stays ( 2 beds)

(3-5 days)• Keeping families together• Practicing new strategies• Transitioning from more restrictive settings• Developing new skills• Ongoing assessment to insure stability• Medication changes/modifications• Familiarity to insure safety net• Supporting families and systems in crisis


Differences Between Planned and Emergency

• Scheduled vs. acute need

• Length of stay

• Who receives services

• Why both are needed


Principle Approaches to Care

• “Guests”• Focus on positive psychology, positive characteristics from

the time of admission and throughout the stay• Sensory reduction room for people with autism and others• All activities can be conducted in home• Trauma informed approach• Communication and collaboration with host home and

providers• Data collection and assessment

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The Therapeutic Environment( trauma informed)


• To provide a productive and positive environment • To promote healthy lifestyle (diet and recreational fitness)• To teach people skills, coping strategies • To support the desire to deal with frustration that is an

inevitable part of life• Provide the support caregivers and people with disabilities

need to receive effective services and supports

What is Our Job?


Expressive Therapeutic Activities

• Utilizes the creative process to help communicate feelings• Provides support to express and explore feeling• Allows for self-expression• Provides a structure for constructive engagement with

others• Helps to develop and explore skills

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Promoting Positive Self Awareness

• VIA survey• Strength spotting• Opportunities to make a contribution• Dialogue to




Evidence Informed:Research on the START Model


Early Years Findings

• START 4-year longitudinal study (2000)• TNSTART Comparative analysis (2007)

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Distribution of sample member use of emergency servicesN=89

Service type used (7/94-6/98) Year1 % Year2 % Year3 % Year4 %

Crisis meetings 26 31 28 15

Crisis phone contacts 42 28 16 14

Emergency respite 20 40 26 14

Psychiatric Inpatient 30 23 28 19


The rate of emergency respite use (7/94-6/98)

Study

year

Number of

sample members

Number of

admissions

Number of

admissions per

sample member

(mean)

Length of stay (in

days) per

admission (mean)

Number of days

per sample

member (mean)

Yr1 7 23 3.3 6.8 22.3

Yr2 14 25 1.8 10.4 18.5

Yr3 9 13 1.4 7.2 10.1

Yr4 5 7 1.4 5.1 7.1


Comparison of Average Emergency Service Usage (and Associated Costs) of Clients with and Clients without TN‐START Services (N=30)

Emergency Service TN-START Clients Average Cost Non-TN-START Clients Average Cost

Emergency Room Visits 0.47 $39.34* 5.2 $435.24

# of Psychiatric Hospitalizations 0.67 2.6

Hospital Days 7.3 $4,403.21 19.93 $12,021.38

Crisis Contact (TN-START Crisis)2.7

(Community-Based Mobile Crisis)

2.7

# of Police Contacts 0.67 4.13

# of Arrests** 0.27 0.2

Respite Days 7.6 $3,274.00 32.2 $15,778.00

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SIRS DatabaseSTART Information Reporting System

PurposeCollect and report on various data to provide evidence-informed

information to stakeholders, community members

SIRS is a web-based data collection system for managing START services


SIRS DatabaseSTART Information Reporting System

• Provides service outcome feedback to project managers and administrators to assess the effectiveness and efficiency of START services

• Captures de-identified information about START clients and has the ability to provide reporting by case load, by region and by state

• Supports a continuous quality improvement approach




Luther Kalb, MHSPhD Student, Department of Mental HealthJohns Hopkins Bloomberg School of Public Health

Co-AuthorsJoan Beasley, PhD; Ann Klein, MA; Jill Hinton, PhD; Lauren Charlot, PhD

Psychiatric Hospitalization Among Individuals in the START Program

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Background• Surprisingly little research on the use of inpatient psychiatric care

among those with ID exists in the US• In countries with structured national healthcare initiatives, such as

the UK and Canada, more research has been conducted.• This literature suggests those with ID have greater rates of

psychiatric hospitalization and longer stays. Factors associated with increased use include:o Milder levels of ID,o Younger age and male gendero Aggressiono Psychotic/schizophrenia disorderso Autism Spectrum Disorder (ASD) o Use of psychotropic medications, particularly polypharmacy


Study Goals

• To examine the probability of as well as the factors associated with psychiatric hospitalization among individuals referred to the START program

• Begin to fill the gap in knowledge about psychiatric hospitalization among adults with ID

• Gain a better understanding of psychiatric hospitalization since reduce of this service use is a critical goal of START


Methods

• Cross-Sectional, Retrospective Design• Data gathered at intake and entered into SIRS• Outcome based on historical report, diagnosis based on

chart review• Excluded those who reside in hospital or long-term facility

setting (n = 443) or missing data on the outcome ( n = 389)

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Sample• N =3299• Data were gathered across 6 states (28 sites) between 2011-2015• Wide age range of individuals (Mage= 31y, SD = 14y, Min = 17y, Max =

78y)• 61% male, 63% Caucasian (26% Black/AA, 3% Other, and 8% Hispanic) • 23% ASD, 7% Borderline/No ID, 53% Mild, 29% Moderate, 10%

Severe/Profound• 80% of referrals listed aggression as the primary reason for seeking

START services


Results• 28% of referrals reported past year hospitalization. Similar prevalence across states

(24%-37%)

• Multivariate Analyses o Increased Odds of Hospitalizationo Predisposing Variables

• Lower level of ID, Younger Age, and Black/AA race (p<.05)• ASD diagnosis and Year (ns)

o Enabling Variables• “Other” Setting and No receipt of SSD (p<.05)

o Need Variables• Psychotic/Schizophrenia Diagnosis and Increased ABC scores (p<.05)• Number of Medical Diagnoses and Psychiatric Diagnosis (ns)


Conclusion• High levels of psychiatric hospitalization among START referrals

• Predisposing, Need, and Enabling Factors all related to hospitalization

• Targets for interventions (Irritability) and supports (younger, schizophrenia)

• Socio-demographics indicate disparities continue to exist in the MH system (race, receipt of SSDI, perhaps level of ID)

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Improvement in Mental Health Outcomes and Caregiver Service Experiences Associated with START Clinical Team ServicesLuke Kalb, PhDJoan B. Beasley, PhDAndrea Caoili, MSWAnn Klein, MA


Study Goals

Aberrant Behavior Checklist

Caregiver Report Symptom Checklist

1 Year Pre-Post

Caregiver’s Service Experiences

Family Experiences Interview Survey

Emergency Psychiatric Services

ED visits and Psychiatric

Hospitalizations


Study Hypotheses• A trend towards improvement across each aim.

• Based on prior research*, changes in caregiver service experiences and hospitalization/ED use may require longer periods of observation given the known difficulties in making systemic changes

*Beasley J. B., ed. Trends in coordinated and planned mental health service use by people with dual diagnosis. Kingston, N.Y.: NADD; 2002. Contemporary Dual Diagnosis: MH/MR Service Models, Volume II: Partial and Supportive Services.

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Demographics – Individual (N = 116)

Variable Children (N=57) Adults (N=59)

Age; Mean (min, max) 14 (6, 17) 28 (18, 61)

ID

None

Borderline/Mild

Moderate

Severe/Prof

16%

35%

28%

12%

10%

49%

22%

15%

Gender (% male) 68% 75%

Race (% White) 78% 83%

Ethnicity (% Non-Hispanic) 90% 58%

MH Diagnosis

Psychosis

ASD

Mean Diagnoses (all other)

2%

74%

1.2

17%

42%

1.3


Demographics – Informant

Variable Children Adults

Relationship (% parent) 88% 76%

Education

High School

Some College

College Graduate+

32%

21%

37%

36%

29%

24%

Income

<= 29k

30-69k

>=70k

26%

25%

32%

37%

19%

17%

Gender (% female) 88% 90%

Employment

Full Time

Part Time

Not working

Retired/Volunteer

26%

15%

51%

9%

31%

20%

46%

3%


Demographics – Informant II


Age 45.4 years 52.9 years

Health (1 = poor, 4= excellent) 2.5 2.4

Marital Status (% Married) 78% 56%

** n = 11 surveys were done in Spanish, all of which were in El Paso

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Services


Crisis Planning (hours)

% receiving service

Mean (median)

Min, Max

98%

10 (8)

0, 36

83%

9 (8)

0, 26

Outreach (hours)

% receiving service

Mean (median)

Min, Max

96%

10.9 (8)

0, 36

96%

10.6 (7)

0, 50

Clinical Med Consultations (hours)

% receiving service

Mean (median)

Min, Max

65%

2.6 (1)

0, 17

62%

2.8 (1)

0, 12

# of Start Crisis Interventions

% receiving service

Mean (median)

Min, Max

42%

2.7 (0)

0, 31

39%

3.1 (0)

0, 31


Results


Aim 1: The Family Experiences Interview Schedule*

• Measures caregivers perspectives about the effectiveness of the mental health service system and providers.

• Questions are not about START, rather the system as a whole.

• Measures each of START’s 3 A’s:

o Access, Appropriateness, Accountability

*Tessler and Gamache, 1993

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35

40

45

50

55

60

65Pre

Post

*

.0-.19 = no effect

.2-.49 = small effect

.50-.79 = moderate effect

>.80 = large effect

Effect Size

or Magnitude

of Difference

= .70

FEIS – Total Score


Aim 2: Mental Health


Aim 2 Aberrant Behavior Checklist*

• The ABC is a heavily cited and psychometrically soundmeasure of psychiatric symptoms for both adults and youthwith ID.

• The ABC consists of 40-items across five subscales. Three ofthe five subscales – the Irritability, Lethargy, andHyperactivity subscales – were employed in this study.

(* Aman et al., 1985)

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ABC - Subscales

5

10

15

20

25

30

Hyperactivity Irritability Lethargy

Pre

Post

* *

*

ES = .58 ES = .62 ES = .56


Aim 3: Measure Emergency Service Use


Hospital and ED Average Visits

0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

Hospital ED

Pre

Post

*

*

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Overall Implications

• Improvements in all 3 outcomes at the level of the service user, caregiver, and system

• Fills a large gap in the literature since health services for individuals with IDD have been historically underdeveloped and understudied

• Very little evidence, for any population, on the effectiveness of crisis intervention programs


FEIS Implications

• Improvements in caregivers’ perceived inclusion in their dependents care and how responsive the mental health system was when they expressed their concerns.

• All elements of START, especially START coordination and outreach, are designed to include caregivers in their dependents care whenever possible.

• Significant improvement in the two aforementioned constructs substantiate a primary goal of START: to listen, support, and respond to the person who knows the individual best


FEIS Implications II

• Improvements in the perceived quality of services provided directly to the caregivers’ dependent

• Findings suggest START can improve both the access and appropriateness of services.

• Enhancing the quality of care that is afforded to the individual with IDD - through services such as medical/clinical consultation, crisis planning and intervention, provider education and linkage agreements –is another principle goal of START

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ABC Implications

• Improvements in the hyperactivity, lethargy, and irritability were observed

• These symptoms are the principle reason for referral to START and are a primary reason for caregiver stress and decreased family wellbeing

• Effect sizes observed are tantamount to meta-analyses of wraparound interventions and psychiatric medications


Emergency Service Implications

• ~40% reduction in ED visits and Hospitalizations• Psychiatric ED visits and Hospitalizations are expensive and

restrictive• Hospitalizations are needed at times. • ED visits offer little in terms of treatment and may be

iatrogenic


Crisis Support

• Directly targeted by cross systems crisis plans, START crisis response, and consultation services.

• The influence of these interventions can be seen in the significant improvements in knowing who to call during times of crisis, support during crisis, and assistance on nights and weekends (from the FEIS).

• These findings, alongside a reduction of inpatient admissions and ED visits, are promising in terms of supporting those with the greatest needs.

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Joan B. Beasley, Ph.D.Luther Kalb, Ph.D.Ann Klein, MA

ISTART Study


Special Hope Foundation

• The objectives of this study were to examine changes in: 1) mental health symptoms 2) rates for emergency psychiatric service use in a sample of individuals with ID served by a midwest START team.

• Participants were enrolled for an average of 430 days (min = 239, max = 642, SD = 115).


Demographics – Individuals (N = 41)

Variable

Age; Mean (min, max) 32 (15, 58)

ID

None

Borderline/Mild

Moderate

Severe/Prof

16%

63%

15%

7%

Gender (% male) 50%

Race (% White) 95%

MH Diagnosis

Mood Disorders

Psychosis

Attention and Impulse control

82%

31%

48%

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• At the time of enrollment, most of the sample lived in supported community settings (70%). Other study participants resided at home with family (7%), lived independently (7%), resided in locked facilities (9%), or had some other living arrangement (7%).


Changes in Mental Health Outcomes and Caregiver Service Experiences

Variable Pretest Posttest Effect Size (d) Test Statistic p–value

ABC (Mean)

Hyperactivity

Irritability

Lethargy

16.63

17.37

8.43

11.73

11.40

4.90

.46

.60

.50

T=2.12

T=2.47

T=2.12

<.05

<.05

<.05


Changes in Urgent Psychiatric Service Use

Variable Pre‐test Post‐test Test Statistic p‐value

Psychiatric Hospitalizations (%) 53 24 Z= 12<.001

Psychiatric Emergency Department Visit (%)

66 39 Z= 7.2<.01

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Implications• These data suggest that START can help to improve outcomes for

individuals who are at high-risk of emergency service use • Improvements in the hyperactivity, lethargy, and irritability

subscales of the ABC were observed - a primary reason for caregiver stress and decreased family wellbeing

• Fifty percent reduction in urgent and acute service use • Study followed individuals prospectively, while prior

investigations conducted a retrospective data review• The positive changes observed in this study mirror those found in

previous research among START programs in different parts of the US


START Research Committee

Our mission is to advance research efforts that seek to improve the lives of individuals with Intellectual/Developmental Disabilities (IDD) and behavioral health needs and their families.

Committee Goals

Inspire and support START network members to conduct and consume research that addresses the needs of the population we serve.

Provide consultation services and discretionary funding to help START programs develop and launch independent research projects.

Connect parties within and across the START network and its affiliates who share similar research interests.

Disseminate research related to START and individuals with IDD and behavioral health needs and provide regular updates on all research initiatives.

Research Partners

GEORGETOWN UNIVERSITY


START National Training InstituteRegistration opens in January 2020. Visit www.centerforstartservices.org for more information

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Systems change has its ups and downs

References

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14 J. B. BEASLEY ET AL.

https://doi.org/10.1352/0047-6765(2003)41%3C329:ATSMCF%3E2.0.CO;2

https://doi.org/10.1111/j.1365-2788.2003.00567.x

https://doi.org/10.2147/PRBM

https://doi.org/10.1001/archpediatrics.2011.714

https://doi.org/10.1177/1362361313477247

https://doi.org/10.1016/j.ridd.2009.10.009

https://doi.org/10.1176/ps.2006.57.10.1501

https://doi.org/10.1038/sj.ijo.0803701

https://doi.org/10.1016/j.chc.2013.08.007

https://doi.org/10.1097/PEC.0b013e31821d8571

https://doi.org/10.1177/1744629512444986

https://doi.org/10.1177/1744629512444986

https://doi.org/10.1176/appi.ps.201200552

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