What is START?

1. Community MH Crisis Prevention and Intervention Model for Persons with Intellectual and Developmental Disabilities

2. 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.

3. 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

4. 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

5. NC-START - WEST NC-START -CENTRAL NC-START - EAST Gates Northampton Alleg. Currituck Camden Surry Person Gran- ville Ashe Stokes Rockingham Warren Hertford Caswell Pasquotank Vance Halifax Perquimans Watauga Wilkes Bertie Yadkin Chowan Franklin Forsyth Alam. Guilford Orange Avery Mitch Durham Nash Edgecombe Caldwell Davie Dare Alex. Wash. Yancey Tyrrell Martin Madison Iredell Wake Davidson Wilson Burke Chatham Randolph Catawba McDowell Rowan Beaufort Pitt Buncombe Hyde Johnston Haywood Greene Lincoln Swain Lee Wayne Graham Rutherford Harnett Cabarrus Cleve land Mont- gomery Henderson Stanly Craven Polk Jackson Moore Lenoir Gaston Meck. Trans Cherokee Pamlico Macon Jones Cumberland Clay Sampson Duplin Hoke Richmond Union Anson Carteret Onslow Scotland Robeson Bladen Pender Columbus New Han Brunswick

6. Planned Structure per Region Based on Gap Analysis

7. Current Structure per Region

8. 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

9. 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)

10. 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

11. 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 Charlot, 2014

12. Aggression is like a “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…. THE SAME SET OF symptoms of ALTERED MOOD AND BEHAVIOR MAY BE manifested for a different reason each time Charlot, 2014

13. 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 Charlot, 2014

14. 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

15. 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

16. 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?”

17. 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

18. 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

19. 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

20. Essential Components • Linkages • Expertise, training • Family support and education • Planned and emergency therapeutic resources (respite services) • Crisis Response • Cross-systems crisis prevention and intervention planning • Employs evidence-informed practices and outcome measures (advisory council, clinical team, data analysis) • Learning communities, local, regional, statewide, national

21. Numbers Benefitting from 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 Effective Strategies ‘Changing the odds’ Secondary Intervention: Identification of individual/familystressors, crisis planning/prevention, respite services, medication monitoring and crisis intervention services Improved Supports ‘Beating the odds’ Tertiary Intervention: Emergencyroom services, hospitalizationsand law enforcement interventions Potential impact of intervention Required intensity of intervention Accurate Response ‘Facing the odds’

22. Core Principles • Positive Psychology • Trauma Informed Approach • Systemic Approach

23. 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

24. 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.

25. 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).

26. 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.

27. 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.

28. Trends

29. 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.