Effective Individual Advocacy in the ADULT System August 2011 Presented by: Lana Hurt,

1. Effective Individual Advocacy in the ADULT System August 2011 Presented by: Lana Hurt, Regional Coordinator

2. Overview • Introductions • Self Advocacy / Individual Advocacy /System advocacy • Distinctions between children & adult services • Understand the culture • Understand the menu – specific models • Recommendations • Questions & Answers

3. Premises The only disability is having no relationships - Judith Snow

4. Self- Advocacy – the Individual’s pursuit of his or her own needs and choices Individual Advocacy- efforts by another person to ensure an individual is supported according to the person’s needs/preferences Systems Advocacy – One or more persons engaged in efforts to improve or change the system or quality of life for all people

5. Good Decisions Matter • “….Providers of human services • affect the daily experiences & future prospects of the people, families, and communities who rely on them. • Their policies and daily practice influence… • Where a person lives, learns, works, and plays • What activities fill the person’s days • Who the person gets to know and • Where the person belongs • Services shape people's experience of community life” • From “What’s Worth Working For – Leadership For Better Quality Human Services” by John O’Brien • http://thechp.syr.edu/whatsw.pdf

6. Role of the Individual Advocate • Understand the options • Know /represent the person • Focus on the “Big Picture” : goals, values, safety guidelines • Communicate “non-negotiables” in advance

7. Distinctions between Children and Adult Systems CHILDREN: • Lack decision-making capacity • Educational Services are mandated (IDEA) • Educational Services are adequately funded

8. Distinctions between Children and Adult Systems ADULTS: • Capacity is presumed • Adult services are not mandated • When/if ICF/MRs close – no more entitlements • Availability based on eligibility, funding & willingness • Poorly funded

9. Distinctions between Children and Adult Systems • Decision-making is truly shared • Good collaboration skills are important: • Listen, be direct, respect time constraints, understand the system

10. For every complex problemthere is a simple solution and it is wrong. --Oscar Wilde Be Alert To The Culture:

11. What Does A Person-Centered Organizational Culture Look Like? • Flexibility is possible • Vision / values are clear • People closest to the person/problem are able to speak up and be heard • Relationships are open, respectful • Learning happens – because changes are noticed and observed AND acknowledged • People stay connected in learning/thinking together through ongoing dialogue.

12. What Does A PC Organization NOT Look like: Passive / Blame Culture Crisis Culture Only time for “quick fixes” Temporary solutions become permanent – until there is another crisis Time to think is a luxury Crisis management replaces real accountability to the person • “Professionals know best” • “Those are the rules” • CYA versus real accountability to the person • Creativity is weird / risky / not acceptable

13. What Helps – When You’re In Between? • Vision: Leaders see through the “lens” of helping people get the lives that THEY want. • Trust • Problem solving – requires release of people’s creativity, not formulaic implementation processes.

14. Person-Centered Principles John O’Brien and Connie Lyle • Community presence: Sharing ordinary places that define community life. • Choice: Autonomy both in small, everyday matters (e.g., what to eat or what to wear) and in large, life-defining matters (e.g., with whom to live or what sort of work to do). • Competence: the opportunity to perform functional and meaningful activities with whatever assistance is required. • Respect: a valued place among a network of people and valued roles in community life. • Community participation: the experience of being part of a network of personal relationships that include close friends.

15. Rules of Trust • Trust is not blind • You can only trust people you know • Trust requires “face time” • You can only know a finite number of people well enough to trust • Be willing to work together with people in a “chain of trust” • Trust requires boundaries • Trust requires learning and communicating – AND having the capacity/support to act on new learning.

16. What Helps • When resources are scarce - negative symptoms can surface • Strategies that exceed (or are more ambitious) than the resources available , will fail. • Sometimes we need to settle for the “least evil” solution while we are working for change – and letting others know this. • Consistent, incremental changes help.

17. Typical Family Concerns: • Initially, trust– Is the person safe? How can this be verified? • Involvement – Will regular visits be supported? • Communication– How will I know if the service plan we agree on is happening? • Behavior Supports – If my loved one has behavioral issues, will he/she end up in jail? • Other?

18. Rules Of The Road! Providers of Licensed Services Work With Three Sets of Regulations • Human rights • Licensing • Medicaid

19. Not All Agencies Are Alike Typical Family Concerns Related System Regulations Licensure / Human Rights guidelines/ contacts Allies within the agency? Visits impact provider income / about 14 out of service days a year is the norm. In general – the smaller the “paid circle,” the more responsive. Unless leadership is exceptional Regional variations. 911 is a potential. Be proactive! VNPP-Protocol For Choice • Trust / Safety • Visits / Involvement • Communication • Behavior Supports • Transfers

20. Human Rights System • First & foremost: safety and the right to therapeutic treatment -The delicate balance between what is important to the person and what is important for the person. • ALL complaints must be reported – many avenues for complaint • Restrictions must be approved by LHRCs • Clients have rights. Providers have rights. • Human Rights Advocates are responsive to calls of concern.

21. Licensing Regulations • Medication guidelines • Providers are mandated reporters. Providers have been advised by LHRCs to report family members who ignore doctor’s orders . • Environmental standards • High standards for operational records • Unannounced visits – Licensure Specialists are receptive to calls of concern

22. Medicaid – the tax payer is the primary stakeholder • Average daily billing and the 90 day guideline on billable activities • General supervision is not billable • Medicaid audits can be very costly

23. We’ve Come a Long Way? • Old Perspective: People with disabilities are defective and must be segregated until “fixed.” • New Perspective: Disability is a natural part of human experience. Environments / attitudes must be “fixed.” We are all interdependent. Learning is the glue. • Current service options scale from segregated to fully inclusive

24. Different Institutions – Different Waivers • HOSPITAL • AIDS • Technology Assisted NURSING HOMES • AIDS • Alzheimer’s • Elderly or Disabled with Consumer Direction (ED/CD • Technology Assisted • Money Follows The Person (MFP) • ICF/MR • Intellectual Disabilities/Mental Retardation • Developmental Disabilities • Day Support • Money Follows The Person (MFP)

25. Accessing Providers Case Manager will assist you in locating and choosing providers Case Managers will contact providers for initiation of services You can switch providers if you choose There are shortages of some providers • The case manager can provide you with a list of qualified providers for each service in the plan • You have the right to choose providers • You have the right to visit, interview and research providers • You decide when, where and how you want approved services provided

26. Different Services – Different Rates Medicaid makes a critical distinction between assistanceandtraining Reimbursement rates for services - http://www.dmas.virginia.gov/ltc-home.htm

27. Pros & Cons of In-Home Services Good things Bad things: Providers who offer this service are limited Hours may be limited, often coupled with respite and/or attendant care Turn-over rate can be high Families are the “back-up” plan • Very person-centered • Allows people to remain with their families • Reimbursement rates are higher than the assistance level service

28. Group Homes versus Sponsored Placements Traditional Group Homes Sponsored Residential Placements Staff live in the home Staff share lives Direct Care staff are service owners Providers - well compensated. Supervisors are partners/facilitators Subject to audit by DMAS, DBHDS & Human Rights Typically person-centered w/active involvement of natural families Typically 1 to 2 clients Therapeutic relationship is central • Staff do not live in the home • Staff work in shifts • Direct care work under supervisors. • Direct care staff are underpaid Providers - well compensated. • Supervision is imposed/external • Subject to audit by DMAS,DBHDS & Human Rights • Typically 4 to 8 clients • Typically agency directed • Often detachment is required

29. Bonding versus Bridging • Bonding – the skills around being in warm and therapeutic relationship with a person • Bridging – the skills around supporting a person to have friends of his/her own, to have a community presence, to have a meaningful life beyond the service world

30. Pros & Cons of Sponsored Residential Services The upside The downside Transfers can be very hard Transfers can be sudden Good succession planning is important – and this is not a regulatory requirement. • Very person-centered • Very flexible / responsive to learning • Very close communication with Guardians / Authorized Representatives

31. No Risk-Free Options ...the truth is, things don't really get solved.  They come together & they fall apart.  It's just like that.  The healing comes from letting there be room for all of this to happen:  grief, relief, misery and joy... -PemaChodron

32. What Can Parents Do To Help?? • History matters : • Gather evaluations / medical history / medication history • Develop Communication Charts • Use Relationship Maps • What are the dreams? • Start with the end in mind • What are positive rituals? • What makes a good day?

33. What Can Parents Do To Help? • Be open to new ideas • View the community as “landscape” for day support? Have a vision that fits the person’s needs/preferences. • Consider funding private therapies? • Stay in collaborative relationship • Try not to put the cart (agency/model) ahead of the horse (focus on the person).

34. Person-Centered Plans –Use the Tools of the Trade! • Part 1 - Essential Information • Part 2 - Personal Profile, What’s Working or Not Working in 8 areas; • Part 3 - Shared Planning/ Outcomes based on Important TO / Important FOR values as agreed by team members at the annual meeting. • Part 4 - Agreements(signatures) • Part 5 - Support Plans(ISPs) from each provider, including the CSB • Appendix - Risk Assessment/ Safety Supports