Ann Geddes, Director of Public Policy

1. Listening and Learning from Families: Crisis Services and the Experiences of Families of Youth with Mental Health Needs Ann Geddes, Director of Public Policy The Maryland Coalition of Families for Children’s Mental Health October 15th,2014

2. The Maryland Coalition of Families for Children’s Mental Health (MCF) • A non-profit incorporated in 1999 • Family Navigators and Family Support Partners across the state • Family Navigators provide information, referrals, one-to-one support and advocacy • Family Support Partners serve families in wraparound as part of the Child/Family Team • Support Groups • Training (Family Leadership Institutes) • Advocacy – participate on more than 22 policy committees

3. CHIPRA-Children’s Health Insurance Program Reauthorization Act • Goal of improving quality and better controlling the cost of care using a Care Management Entity structure for children with serious behavioral health disorders • One of Maryland’s goals was to assess existing crisis response services for youth, research best practices and propose a redesign of Maryland’s crisis response and stabilization system • Contracted with MCF to conduct a series of focus groups with families to learn about their experiences

4. Focus Groups with Families “Tell us What you Need When Your Child or Youth is in Crisis” Recruitment • “For families caring for a child/youth under age 22 who have used crisis services for their child within the last two years” • Held in summer 2013 • 7 focus groups across state

5. Data • 48 family members from 11 jurisdictions participated • The majority of children were male (69%) • The most frequent age was 14-17 years (50%) www.mdoalition.org, Publications Listening and Learning from Families: Crisis Services and the Experiences of Families Caring for Children and Youth with Mental Health Needs

6. Data Collection: Diagnoses • ADD/ADHD 33 • Anxiety D/O 24 • Mood D/O NOS 23 • Depression 22 • Bipolar D/O 19 • ODD 19 • PTSD 10 • Sleep D/O 9 • Conduct D/O 8 • Self-injury 8

7. Data Collection: Children with Complex Mental Health Needs • Multiple Diagnoses • Multiple Hospitalizations (average 3.73) • Involvement with Multiple Agencies • DSS 24 • DJS 17 • Special Ed 39 • Substance Use 9 • 81% of children were taking medication • The average number of medications was 4.4

8. Crises: Aggression and Violence • Out of Control Behavior 37 • Danger to Others 23 • Danger to Self 23 • Suicidal Ideation 16 • Psychotic Behavior 12 • Suicide Attempt 3

9. The Voices of Families He became very violent. Aggressive, nasty, destroying things. Child became agitated, increasingly aggressive…broke a window, destroyed a room, etc. Destruction of property, hitting us. My child arrived home from school agitated and upset. The child proceeded to kick and punch everything and everyone they came into contact with.

10. The Voices of Families (contd.) He was extremely aggressive – breaking items, putting holes in the wall, threatening to harm the people in the house. Out of control behaviors. Attempted to destroy property, trying to injure brothers and mom and self. Her siblings didn’t even want to go to sleep. They were afraid of her. I had to hide all of the knives. My child physically attacked me.

11. Families Response to Crisis 85 % reported using…

12. The Emergency Department

13. Experiences in Emergency Departments • Long waits for evaluation • Long waits for a bed if hospitalization was recommended • Being treated judgmentally by staff • Not being listened to by psychiatrists • Family member not being allowed to leave room of child • Child de-escalating while waiting for an evaluation, told to go home

14. The Voices of Families One time we were in the ER at least 24 hours – longer than the admission We were there three days waiting for a bed The ER needs to be more educated and caring. They lack severely in empathy. They stigmatize people a lot. If a child is going through a crisis it is not the parent’s fault

15. Emergency Departments • Despite having a poor experience in EDs, some families felt that it was helpful • 41% reported that it had been helpful • 58% reported that it had not been helpful • Families felt that their child needed inpatient hospitalization and the ED was the only way to access admission to the hospital

16. Downside of ED usage • Extremely costly • Families sent home without services • No follow-up in the community • Disruptive to child and family

17. Families Response to Crisis 72 % reported using…

18. Law Enforcement

19. 911 • First response in an emergency • Messages on answering machines say to call 911 or go to your nearest emergency room • Families don’t know another number to call

20. Experiences with Law Enforcement • More positive than emergency departments • 57 % thought it had been helpful • 43% thought that it had not been helpful • Varied widely – in all 7 jurisdictions where focus groups were held • Some officers better equipped to deal with mental health crisis than others

21. The Voices of Families We called 911 three times. The police are responsive. The first couple of times a team of two came out. They were extremely well trained – knew exactly how to talk to a tween. We were so impressed. The second time it happened that the same team came out. They were extremely good. They took us to the hospital. The third time two police officers came who were not well trained.

22. Downside of Law Enforcement Usage • Involving law enforcement could result in assault charges or destruction of property charges against the child and send them on a trajectory into the juvenile justice system • Creating additional trauma • Tasing • Handcuffing • Pointing service revolvers at youth

23. Mobile Crisis Teams

24. Mobile Crisis Teams • 46% of families said that their community had a mobile crisis team • 16 families (n=48) reported using mobile crisis services • 69% were disappointed by the limited help available • Mobile crisis team never came out • Mobile crisis team took hours to arrive • Mobile crisis team did not follow-up

25. The Voices of Families They call it mobile crisis but they don’t come out. I called the mobile crisis team. They told me to take her to the hospital. We have yet to ever have the mobile crisis team show up. We just went the ER route. Mobile crisis team takes hours to come – ended up having to all 911 because they never got there.

26. Crisis Hotlines and Online Resources

27. Crisis Hotlines and Online Resources • Universal crisis service available to all families • All call centers operate 24/7 • 30% of families reported that the service was available in their community • 11 (n=48) families reported using a crisis hotline • 6 families felt it had been useful

28. Voices of Families I called (the hotline) when in crisis – they didn’t give me good answers. Told me to call the police. My daughter used a teen hotline. They talked to her for like half an hour. She was much better afterwards.

29. What do Families Want? • Mental Health Urgent Care • Understood by families as a way to get an admission to the hospital without having to go through the emergency department • Families want admission to the hospital because there are no intensive mental health services available in the community

30. What do Families Want? • A crisis plan in place • Provider availability quickly • Provider who knows the child • Follow-up to make sure the situation is stable While he was on the RTC waiver for two years we had a crisis team available to assist him at any time – he had no hospitalizations

31. Conclusions • Families want alternatives to the Emergency Department • Law enforcement officers are the front line for crisis • Maryland’s mental health crisis system is underfunded and lacking in services

32. Recommendations • All treatment providers should develop a crisis plan with a family – consider making self available in times of crisis • Provide more widespread mental health training for law enforcement officers about responding to children’s mental health crises • Expand Mental Health Urgent Care Clinics

33. Recommendations • Increase the number of 24/7 Mobile Crisis Teams across the state • Expand the array of intensive community-based services • Increase public awareness of existing crisis services

34. Questions?