1. Participant-Direction Workshop National Resource Center for Participant-Directed Services Boston College

2. Center Contacts for Questions  Lead on AAA and SUA participant-direction technical assistance:  Suzanne Crisp  suzanne.crisp.1@bc.edu suzanne.crisp.1@bc.edu  Phone: 281-360-2027  Lead on VHA participant-direction technical assistance:  Dianne Kayala  dianne.kayala.1@bc.edu dianne.kayala.1@bc.edu  Phone: 401-338-0864

3. VDHCBS Program Requirements*  Receive an assessment and care planning assistance  Decide for themselves, or with a participant representative, what mix of goods and services will best meet their, and their family caregiver’s care needs  Manage a flexible, individual budget  Hire and supervise their own workers, including family or friends  Purchase items or services needed to live independently in the community  Have fiscal management and support services which facilitate service delivery  Utilize traditional service providers if desired * From VHA and AoA VDHCBS Program Standards

4. Workshop Presenters  Lori Simon-Rusinowitz, PhD, Director of Research  Mark Sciegaj, PhD, Director of Training  Suzanne Crisp, Director of Program Design and Implementation  Erin McGaffigan, Public Policy Lead and National Participant Network Facilitator

5. Cash & Counseling Research: How Can It Help You and Your Program? Lori Simon-Rusinowitz, PhD, Research Director National Resource Center for Participant-Directed Services University of Maryland School of Public Health Department of Health Services Administration and Center on Aging www.cashandcounseling.org February 25, 2009

6. How Can Cash & Counseling Research Help You and Your Program?  Research and “lessons learned” from the 3 Demonstration and 12 Replication states can:  Answer questions for key stakeholders and help gain their support  Guide program design and implementation (e.g. outreach and information; counseling and fiscal services; budget amounts, etc.)  Guide training and technical assistance  Address myths and program misinformation

7. “Lessons Learned” from 15 States Demonstration Arkansas Florida New Jersey Expansion Alabama Illinois Iowa Kentucky Michigan Minnesota New Mexico Pennsylvania Rhode Island Vermont Washington West Virginia

8. How Did Participants Fare in the CCDE? CCDE Evaluation Results: Key Points For persons with disabilities and older adults, evaluation results indicate that for cash option participants:  Health outcomes are the same or better.  Access to authorized services increased.  Spending on other Medicaid services - such as nursing homes, home health, and other home care waiver services – was reduced.  Satisfaction increased, quality of life improved, and participants had fewer unmet needs.

9. CCDE Policy Implications  Can increase access to care  Greatly improves quality of life (all ages)  Caregivers also benefit greatly  States may be concerned about costs  But have learned how to control them

10. A Sample of Research Resources That Can Help Research-based Resources Available at www.cashandcounseling.org: www.cashandcounseling.org  New “Handbook” to guide states and organizations in developing and implementing self-directed programs  CCDE evaluation reports based on in-depth surveys with participants, workers, and informal caregivers  CCDE participant team stories based on in-depth interviews with participants, workers, and consultants  “Lessons Learned” Report

11. Research Resources That Can Help  Interactive, user-friendly data website to answer your own questions about CCDE participant outcomes  Focus group reports  Articles and presentations addressing key policymaker concerns (e.g. older participants, participants with mental health diagnoses, hiring relatives as workers)  Participant success stories  Many more resources are available

12. In Summary “Take home” message: Many research-based resources are available to help you in designing and implementing your programs. Be sure to learn from the experiences of pioneer states The new NRCPDS will continue to conduct practical research projects to guide design and implementation of your programs (e.g a national inventory of participant-directed programs).

13. Mark Sciegaj, Ph.D., MPH, Training Director National Resource Center for Participant-Directed Services The Pennsylvania State University Department of Health Policy and Administration How Can Training on Participant-Direction Help You and Your Program?

14. Why Training? Changing organizational culture  Differs from other types of organizational change Not simply structure and systems Focus shared organizational beliefs, values, and behaviors Participant FocusedParticipant Centered

15. Culture Change and Training Challenge assumptions  Goal determination  Service determination  Service provision Identify knowledge and skills  Necessary elements for both case managers and participants to move to proficiency in self-directed care

16. A Sample of Training Resources That Can Help The “Handbook”  Chapter 6 Counseling  Rationale and justification for training of personnel  Suggested training formats  Examples from existing training programs

17. A Sample of Training Resources That Can Help www.cashandcounseling.org  Resources and publications Links to various clearinghouses  Videos Personalize importance of participant direction  Available training curriculum Focus on case managers

18. A Sample of Training Resources That Can Help Consultant Training Program  MODULE ONE: Facilitating the Paradigm Shift for Consultants  MODULE TWO: The Dynamics of Choice and Decision-Making for Participants. www.cashandcounseling.org

19. Consultant Training Program Designed to be delivered in two half- day sessions  Curriculum  Handouts  Case Studies  PowerPoint Slides

20. In Summary Training is key to your programmatic success  Case manager/counselors  Participants  Workers Variety training resources available  Find content that fits your program  Find approach that best serves your needs Upfront investment, long-term benefit

21. AoA & VA Nursing Home Diversion Conference – View on Participant Direction February 25,2009 Suzanne Crisp Boston College

22. Today’s Discussion Identify VA/AoA Standards for Participant Direction Present in the Context of Operationalizing a Program Discuss Options to Develop How we can help….

23. VAH/AOA Standards Assessment/Plan of Care Mix of Goods and Services Hiring Decisions/Goods & Services Flexible Individual Budget Fiscal and Support Services Traditional Services, if desired

24. Assessment/Plan of Care Tool/Method/Practice to Determine Participant’s Needs Goal of Assessment:  Accurately Identifies Needs  Process is Standardized but Personalized  Applied Consistently with Comparable Outcomes  Flexible – Easy to Modify Process Same Regardless of Service Delivery Method Plan of Care Results from the Determination of Need:  Describes Informal Supports  Develops Emergency Back-up  Identifies Risks and Plan to Manage Risks

25. Mix of Goods and Services Hire Staff Purchase Goods, Services, Equipment or Supplies  Must Collectively Meet Assessed Need  Typically, Not Available Under Different Funding Source  Enhance Experience in the Community or Family Involvement  Increase Skills to Become Less Reliant  Involve Skills Training for Family Member Options:  Prior Approval  List of Approved Items  List of Prohibited Items

26. Hiring Staff Recruiting, Interviewing, Selecting, Checking References, Hiring, Specifying Duties and Expectations, Managing, Evaluating and Dismissing Hiring Family Members Using Supports – Counseling and Financial Management Services

27. Individual Budget Funding Dedicated to Meet Individual Needs Participant Expresses Preferences as to How to Meet Needs Common Methodologies:  Based on Assessed Needs  Based on Historical Expenditures  Based on the Resources Available  Based on Statistical Calculations

28. Fiscal and Support Services Explore Existing Supports Untraining and Retraining may be Necessary Describe Roles and Responsibilities Develop Operations Protocol Develop Specific Performance Indicators Monitor and Oversee Activity Analyze Results, Make Improvements

29. Traditional Services Goal of Initiative - Use as a Last Resort Commonly Used as Back-Up Consider Temporary Use Mixing Services

30. Erin McGaffigan Public Policy Lead and National Participant Network Facilitator Participant Involvement

31. States attempting systems change found success to depend on early and sustained involvement of stakeholders, including participants* Participant involvement focus areas: Program design, implementation, and evaluation Peer mentoring and support Defining participant: previous, current, and potential users of services (not just age) caregivers for those who require support communicating interests Advocate representation in addition to, rather than instead of, participant involvement *O’Keeffe, J., Anderson, W., O’Keeffe, C., Coleman, B., Greene, A.M., & Brown, D. (2008). Real Choice Systems Change Grant Program - FY 2002 Real Choice Grantees and Community-Integrated Personal Assistance Services and Supports Grantees: Final Report. Baltimore, MD: Centers for Medicaid and Medicare.

32. Participant Involvement Benefits As with the overall intention of participant-direction, provide participants the opportunity to inform us how to create systems that best meet their needs Learn what does and does not work (e.g. most effective methods for outreach) directly from the source Opportunity to build participants’ knowledge, participant- directed skills, and advocacy skills Opportunity to build trust and coalitions among participants, advocates, and policy makers

33. Participant Involvement Challenges # 1: Assumptions pertaining to elders’ interest in policy design* Making materials and meetings accessible Effective feedback loops Informed and engaged participants It takes time… Building trust Consistent personnel with time and resources to support the process *More can be done: Involvement of Older Consumers in the Design, Implementation and Oversight of Home and Community Based Services (March 2008).National Association of State Units on Aging (NASUA)

34. Some Involvement Methods Design, implement, and respond to surveys Assist to identify topics and participate in focus groups Participate in “advisory” groups and subcommittees  single/multi-stakeholder  single or multi-purpose Participate in public hearings Providers of services and/or supports (e.g. consultant services and/or peer mentoring)

35. Potential Participant Involvement Areas  Overall program design: assessment process; individual budget methodology & allowable goods and services  Outreach methods: user-friendly language and approaches; grass- roots outreach  Training materials: design of participant manual; hiring, screening & managing workers  User-friendly forms and information: grievance and incident procedures; spending plans and fiscal forms  Quality design and improvement: quality benchmarks, survey questions and process; addressing grievances

36. National Participant Network (NPN ) Guiding principles: Participant involvement makes program design, implementation, and evaluation stronger Participant involvement is critical to make sure our programs are available in the future Participant/caregiver representation across states: Work with states to strengthen participant involvement Share ideas on how to make Cash & Counseling better Develop ways to advocate for participant-direction at the local, state, and national level

37. Some Network Efforts… Guidance on the development of local participant groups Developed “Got Participants?” outreach tool Shared helpful tools created by states (e.g. Vermont outreach letter and various states’ lists of allowable purchases) Provided input for research: flexible/innovative purchasing of goods and services Provided nominations of promising practices for State Resource Guide on Self-Determination Provided comments on DRA proposed rules

38. In Summary… Participant involvement requires investment The benefits, when time is invested, can include a more responsive and sustainable model The National Participant Network, with representation from your state, will connect the national participant voice to the local one