1. Empowering Parents Training in Basic Care Management Skills Wendy Besmann, K-Town Youth Empowerment Network Millie Sweeney Tennessee Voices for Children

2. Why we’re here Listen, learn, share ideas about training parents in basic care management skills. Offer a sample training you can use and adapt to your unique environment. Address practical concerns about how parent care management training might work for you in your own unique environment.

3. Who are we calling a “parent?” For convenience, this workshop uses “parents” to represent all parents and other family caregivers who make primary decisions about the care and treatment of their children and youth. This might include grandparents, foster parents, relatives, and others.

4. Questions to Address 1. What are care management skills? 2. How do parents benefit from training? 3. How has this training been implemented? 4. Barriers, challenges, lessons. 5. Does this training fit your goals? 6. What is needed to make training effective for the families you serve?

5. About the Presenters Wendy Besmann Parent of 2 children with emotional/behavioral challenges Author of Team Up for Your Child Social Marketer/TA Coordinator for K-Town Youth Empowerment Network, a new System of Care in Knox County, TN

6. About the Presenters Millie Sweeney Assistant Director for Programs, Tennessee Voices for Children. Tennessee Voices for Children, founded in 1986, operates the Statewide Family Network and other programs in cooperation with its state and community partners, including Systems of Care in all three regions of Tennessee.

7. How does care management training fit SOC values? Role of parent care management training Teaches families the basic skills to navigate systems as independently as possible. Role of professional case management Assists family care managers to access services. Role of Wraparound Models and assists family care management.

8. Consider How does this training differ from parenting classes? How do benefits to parents differ in these two types of training? Can all parents served by SOCs benefit?

9. Your current use of parent training…something to think about How is parent training used by you/your organization, if at all? In the services provided by you/your agency, how are parents or caregivers included? What role do they play? In your experience, what has worked? What has not worked?

10. Four “P’s” of training parents in care management skills Purpose (How will this situation help/affect my child/my family/myself?) Process (What are the main steps involved in this experience? ) People (Who will I meet? Why?) Parent/caregiver’s role: (What’s my job in this environment? Why is this my job? How do I do this job?)

11. Parent Care Management Training: “Your Role on the Treatment Team”

12. If Your Child Has Behavioral Needs…. Family life is turned upside down. Day-to-day life can be chaotic The ordinary rules for raising kids don’t seem to work. Parents feel stressed out, angry, confused, scared, traumatized, grief stricken, guilty….PLUS

13. You suddenly have a team of “professionals” in your life who Use unfamiliar words. Make you sign a lot of forms. Keep telling you to be patient. Don’t talk to each other very much. And nobody tells you the game plan.

14. Who’s on your child’s care team? Medical Behavioral Educational Developmental Insurers Social Agencies Benefit personnel Support staff YOU, an equal partner and child’s best care manager!

15. Who are we calling a “parent?” Any family member who can make decisions about a child’s care and treatment. This may include a birth parent, grandparent, relative, foster parent, etc.

16. Team Dynamics: PASSING THE BALL Picture this team in a circle. In the middle: Parent and child. One team member has information others should know (“the ball”).

17. Team Dynamics: PASSING THE BALL Parents often have to catch the ball and send it on to others… …so questions get asked and vital treatment details don’t get missed.

18. Why “PTB” is Parent’s Role on the Team Professional may know why negative behavior happens, how their own systems work and how that system’s services can help the child’s needs. Only parent knows what happens in everyday life—and can gather data from the “Circle of Support” in that child’s life.

19. Five ways to “pass the ball so important information stays “in play” 1. Keep simple records—use shortcuts. 2. Learn the language and notice where things get stuck. 3. ASK GOOD QUESTIONS. 4. CHECK to cut down on mistakes by humans and systems. 5. Keep team members informed.

20. 1. Keep simple records

21. The 2-inch, 3-ring binder Keeps paperwork (semi) organized and available for appointments, meetings, and phone calls. At the end of the year, put on the shelf and start a new one. Provides an accurate, (semi) organized annual record.

22. More Binder Basics: Consider a basic crisis survival kit for passing emergency information Current records Health History (page 22) Emergency phone numbers, resources for your area Questions to ask if the child needs emergency care. Family safety plan if necessary

23. More Binder Basics Also consider including: “Read it when you need it” envelope Happy picture of your child Tip: Mess it up now, clean it up later. Life can be a zoo. Parenting is really Job #1.

24. 2.Learn the language… and notice where things get stuck.

25. Five Ways to Make the Most of Appointment or Meeting Time 1. Know your support staff. Call ahead if running a late; ask them to help you solve waiting rooms problems. 2. Make a WRITTEN list of top five things to ask/tell. Amazing But True: Written list acts as visual cue for school and clinical professionals to slow down and listen.)

26. Five Ways to Make the Most of Appointment or Meeting Time 3. Use the “Reflective Response.” “In other words…” “So I what I hear you saying is…” “As I understand it, you mean…” “Am I correct that…” “Just let me tell that back to you….” “Then you would agree that…”

27. Five Ways to Make the Most of Appointment or Meeting Time 4. Sum up the plan (“So if I understand it, our plan is…”) and ask about next steps. 5. Do an “exit check.” (Do you have med samples? Check-out paperwork? IEP forms and all original documents? Your binder? Prescription forms? Other paperwork? Has doctor/school staff answered all questions?

28. 3. Ask Good Questions.

29. The best questions begin with: Who…? What…? When…? Where…? Why…? How…? and Can you explain…?

30. Tests and Evaluations What is the name of this test? Why is my child being given this test? What types of information will this test provide? Who will administer this test? When will I receive the results of this test? Who should I contact if I don’t receive test results by that time?

31. PTB Tip: Remember to ask about next steps Who will we need to see next? What will happen next? When can we expect this to happen? Where will this happen? Why is my child seeing this specialist? How can I contact you (or that person)? Can you explain how….will work?

32. Test results: If things don’t make sense, keep asking! “I’m a bit confused by this part. Could you explain again…?” “In other words, does this mean…?” “Let me make sure I’ve got this correctly….?” “So if you had to sum up these results in one sentence….”

33. 4. CHECK to cut down on mistakes by humans and systems.

34. Lab, Report, and Referral Errors ASK for copies of all labs and reports. You have a right to get them. CHECK (by phone before the appointment) that referrals and labs were received. HAND-CARRY copies of labs and reports to appointments whenever possible. Keep your own copy in your binder. KEEP A CONTACT LIST in your binders so reports can be sent to other team members.

35. 5. Keep All Your Team Members Informed

36. PTB Tip: When Treatment, Meds, or Conditions Change “Who else will get these results? “Are there any information releases I need to sign so you can send results?” “Ms. X wants to be told about this lab result. What is the best way to do that? “Would you like me to let you know if someone else makes a treatment change? “How do you want to get this information?

37. PTB Top Five Rules 1. Keep the System Simple: If the system doesn’t make life easier, consider shortcuts or changes. 2. If facts don’t make sense: Keep asking until you understand (or they reconsider). 3. Be understanding about human errors— but firm about seeing results. 4. Widen the Circle of Support—gather information, network, get others involved. 5. Celebrate success! What are you doing right?

38. Now that you’ve seen the mini-training… Turn to the person next to you and discuss: Do you want to use this? Why or why not? How would this be helpful to you in your work with families? In what ways could you incorporate this mini training into your agency’s current programming? Focus on how, when and where you could use this information and training – not the barriers.

39. Incorporating Parent Training TVC’s experience

40. What’s worked at TVC… Parent training as core of staff training; Family Support Providers hired to work with other families. Incorporating various forms of parent training into all programming – every program involves some level of training, modeling, and guiding for parents. Training and mentoring programs to increase pool of volunteer advocates in communities. Training parents to be certified Family Support Specialists hired by other agencies in order to enhance service delivery.

41. Challenges… System “push back” Fighting stereotypical view of parent as problem/ incapable of understanding. Combating the traditional service delivery mode: services done TO parents rather than WITH parents.

42. Challenges FSPs vs. Case Managers – addressing fear that case managers will be replaced by family members due to cost concerns. Time and cost management for providing training – nights/weekends, materials, staff time, family members with complex needs

43. But well worth the effort! Informed parents identify more options for their families and make better decisions. Parents with training are assertive rather than aggressive advocates, able to see all perspectives. Trained parents become part of the solution and contributing team members in service delivery. Informed parents build collaborative -- not combative -- relationships with providers.

44. Brainstorming and Sharing What are the challenges in your own community? Creative solutions (NO WRONG ANSWERS!) How would you describe this approach to your colleagues back home? What might help you “sell” the concept to others in your organization?