Person Centered Planning and Practices (PCP) SymposiumApril 23 -24, 2015

Islandwood, Bainbridge IslandNotes

Day 1: April 23

Understanding our Past to Design our Future Creating a history wall of person centered practices in Washington Developing a shared appreciation for the progress and strengths from the past of

PCP in Washington and open up the possibilities for the future. Sign posts from history keepers who discussed:

o How might we imagine the best possible future use of person centered planning?

o How do we preserve person centered planning versus being another part of an impersonal system?

o Systems respond to pressure – how do we want to use our pressure/influence

New rule Person Centered Planning rule from CMS and what it means for us. (please see attached handout describing these rules)

Flipping the Frame: to unleash our ideas, we’ll start by imagining a system to ensure that no one can use or benefit from person centered planning.

I/WE can stop: Making space for what matters Opening up smooth communication without barriers Being closed minded Supporting community groups in tangible ways Leaving plans-galvanizing implementation of plan. Non follow-through, start celebrating. Being more purposeful in including people in their own plan Talking about person centered values. Stop focusing on disability Stop working on me,,, work with me. Stop focusing on what won’t work. Stop over documenting (restraint)..

Shift and Share: What are current practices we can learn from which can inform what we want to do going forward? Partake in a quick overview and Q and A session with folks currently experimenting and implementing promising practices.

A. Snohomish mini grant: Facilitators guild

1

Questions How will families know about planning? Contact facilitators When do folks start with families? Community practice.

B. Clark mini grant

There is a magic in partnerships Facilitators then becoming leaders Families of younger children are not often given the opportunity to develop

hopes and dreams. Individual education plans are easier after the PCP is completed. Need information about outreach/info/potential interests of customers/families. Lack of PCP capacity has lead to attrition (we think). Pay for training and sub-time to get teachers interested. Consider parent facilitators.

C. At work mini grant

D. Qualities of facilitators Repetition-do own plans Mentorship Facilitate kids Be a participant in someone’s plan. Network with other providers. Have expectation that each person has unique needs for plan. Create learning communities Recognize cultural and community differences. Training intensive-right questions, listening, objectives. Offer PCP experiences in community centers, etc., -expand typical communities. Early planning. Belief Facilitators not see facilitation as a career. Heart-based work. “Self implementing plan:” Facilitators shift “great ideas” into steps that can be

taken. Build skills of individuals who are involved in the person’s life to create action. Graphic recording- Plan needs to be designed in a way that the person can

understand it. Careful understanding before planning so that the plan is meaningful. Two-

person facilitation. Personalization.

2

Facilitator be prepared- Tool bag (communication, clear roles of participants in plan, materials).

Attend a great plan Have a diverse team with lots of ideas. Invest in being introspective-encourage facilitators to question. More conversation and story sharing. Promote person=centered planning throughout cultures. Increase story telling Offer skills to broaden community: high school transition: bring kids in with

disability to be mentors. Each of us has a current plan. Do no harm commitment.

E. DDA person centered planning.

F. Make a Difference (see attached handout).

H. PAVE

Open space sessions: We will spend the rest of the afternoon in Open Space to tease out the things that surfaced in the first half of the day and begin to decide what is to be designed for the future

Group 1: How do systems embrace person-centered practice? Learning communities encourage stretching and growing. Current practice annual assessment and ISP that documents goals and outcomes. Greatest predictor of success is endorsement by senior leadership. Less assessment/more discovery Alignment-does everything we do move us in the direction we want to go? Measurements should reflect the values. Tension between what the legislature want us to complete as this requires intrusive

questions that can decrease person centered efforts. Books to read include “Baptist Health Care Journey” and “Transitions” Front page of ISP includes a 1page description available for all. Creating an environment for healing and growth. Training of case managers to include things that people can “hang their hats on” and

have a vehicle for listening. Language is really important-the questions you ask can affect the direction and

quality of the conversation. Consider and “aptitude” for facilitating and person centered philosophy in the hiring

process. Facilitators of plans/assessments have experience with each tool being personally

administered for themself

3

The questions you start with can form the direction the planning process goes. Starting with health and safety sets that focus.

This is where we are and where we want to head. Create a container for learning conversations.

Group 2: Best practices in person centered planning. Being open about the purpose. Right relationships-facilitator may not always be there. Content vs. process expert. Vibration- listening deeply at pace of the group. Building as it goes. More people invited, family becomes facilitator, take action.

Break into small steps. Meet again-Did we honor our commitments? Every meeting ends with

commitments. Honor underlying dreams in the room? What is working? Plans change over time. People who honor the dream. Person and family have ownership of plan. Mediation- read the book entitled “Getting to yes.” Don’t need to have the answers-build collaboration. Start with who is there and move toward community. Relationship map. Work with the now –Move toward the dream Will uncover stuff, but not a therapist Need support of other PCP facilitators Do no harm-take breaks, can open a wound, take breaks. Trust the process. Learn the process. Mentoring and learning together. Evaluate each other. Find process and tools that work for you. Yearly gatherings can be helpful to facilitators. Facilitators are spread out. Local

guides can provide support. Independent facilitators vs. agency facilitator. What are power dynamics when

agencies facilitate consumer who are served by the agency?

Group 3: How do we educate the community and ourselves about PCP? How many of us have active plans for ourselves? How do we grow the idea without

them? PCP is so basic. Why is it not being used more? Need to take a step back from where we are now. Conflict between services (health and safety) and choice. Dignity of risk. You may have failures. Shared decision making and informed

consent. Do we need to change language to keep it from sounding like its done “to” you? Integrate in the schools so everyone has one, not just students with disabilities.

4

Getting the message to the masses. Shift how we think. Media. Do one for ourselves. Dinner party. Create a tool kit that we share. Value of PCPs with family, book clubs, church. Create a streamline template. What’s the hook? How do you get others on board and to care? What is in it for me? How do you make everyone wants it.

Group 4: Getting goals implemented Empower “Joe” Too many goals. Assign supports. Practice at home. 1 person assigned to insure fulfillment as a follow-upper. Engaging people (family). Smaller steps, goals Plan sooner for right fit. Target chose employment Family more Goals should be SMART ie., specific, measurable, attainable, relevant and time

specific.

Group 5: No topic/title noted: Could it be PCP and aging? PCP and aging Baby boomers Workshops Path Plans Family did not talk to each other Conversations Working with families State support. Trust the process and honor the person. What supports do we really need? It’s about the whole family. Mortality: Atul Gawend. End of life issues Medical doctor, medical model. How much time you have left Quality of life issue Control over pain Control over where we live Quality of life/care A meaningful life from their perspective Who starts the conversation.. peers, adult children, conversation with each other Helping people have conversations. Set up and purposeful. How to have

conversation. Doctors model of preparing for the end of life talk Parent support

5

Continued follow up Siblings Talk about fears Seattle hospice Processing grief from loosing a parent. Pictures of loved one. What do you want your last days? Combined funds to survive Role reversal: The loved one is taking care of the parent. Who is taking care of us? Have the conversation. Do you want someone you don’t know? Making the choice

without you. Japan: 80% over 75 Robots provide care and supports. Medical robots It takes a village to raise a child. It takes a village to lay someone to rest.

Group 6: What is working for you with PCPs? Trish McConaughy, Emily Harris, Dee Dee Garman, Eric Matthes

Available facilitators Focus on person participating in a way that works for them. Gathering history in advance Identifying relevant information –asking the person. 1:1 meetings with the focus person. Getting clarity from the person about what they want from their meeting, their

expectations. Meeting with each team member individually first, direct observation. Type information to send in advance of meeting. Authorize person centered planning through individualized technical assistance. 1:1 interviews with team members are more productive and positive. With advance information, meetings are more productive. Listening radically to what people say and do. (Body language, etc.) People are smart and learn. Handle differences in perspective by adding information to the plan (and clarity). Add information to clarify statements. Identify person with e-mail/call the team to check the plan and time frame for doing

this. Information contains enough detail so anyone could take care of it and use it. Pictures of the person, friends, family and slide show at meeting, music and pictures. Free rooms at the library, new season’s market. Expand the team, pushing the social network. Sometimes you can get a phone interview if not the person. Sending invitations or making personal invitations. Making sure the person’s voice is represented in all steps of the process.

6

Having a variety of options for the locations of the meeting (home, community rooms).

AKA person centered party-it’s a celebration for you. When it “feels” good. People are learning and moving forward. 1-3 meetings to complete the plan. Tasks are assigned. Not making it too overwhelming. Add a page (as needed)- Needs to know, wants to know, wants to learn, leads to

areas to explore expectations, not limitations. Using seemingly impractical or outrageous dreams to gather information. “Life is a brief and precious gift and I believe that we are supposed to have fun,

especially me. I feel compelled to lead by example.” Trish

Group 7: Integrated programsJoe Smith, Jean Loy Use existing programs to cultivate ideas (i.e. school to work). Create consistent language for the full system between educators and state. Develop interest areas that bring students together. Create supported employment positions from elementary – for the entire school

district-blended classes. Take what the Bellevue school district is doing on the road. Partners for work (King County), Rotary Clubs employ school to work student. Bring rotary clubs and school together. Info for breakfast interview. Rotarians

become invested in school Continually move forward with what you learn. Don’t dwell on failures or what is not

available. Make time with special education instructors. Integration is about school/community porridge Utilize Rotarians as they represent big and small businesses. Know that community is important. Share the stories (as interns do job help Rotarians recognize their impact). Stories

about previous interns. Stories humanize-creates questions where there were none before.

“Work around edges”-look for opportunities to build the little and big relationships I.E.P. uses one kind of language, starts at a young age and brings this together with

PCP. What teachers are doing is in tandem with school to work, families make the systems person centered.

Integration in community and school are a mirror of each other. The community should be a mirror of the school and the school should be a mirror of the community.

The institution allows for the greatest potential for the individual (tree story). For allowing for individual, individual and family give expectations-this would not happen without opportunity for dreaming and exploring.

Fundamental belief with special education teachers-from an early age, understanding what the student says and what they want to be.

7

Themes:o Start with every student in special ed.o Special education teachers believe in person centered curriculum that says

they believe, have expectation and don’t do for them.

Group 8: Person Centered Planning for AdvocatesEric Matthes, Aelfwynn Freer, Krishna Raven-Johnson, Sandi Miller, Noah Seidel Increase respectfulness Focus on the person, ask what they want to be identified. Everyone gets on the same page. Easy enough to understand what the person is doing Advocates doing own plan with others-develop own networks, facilitator, decide

want to do. Finding ways to increase the number of advocates interested in being facilitators:

information, mini-grants, coffee clubs, SAIL Digital tools More user friendly Someone to work with person to create ideas-not always a meeting. More tools. More tools for visual learners.

Group 9: Favorite tools and resources MAP: more space to write, each map is a questions, guides us toward who, what,

where, when and why. PATH: not enough who you are, better for organization, good for more specific goals,

strategic planning. Informing families Building trust.org Web based form

o Good for ideas-to think about goal for planning. o Not great PCP

Good prep Helen Sanderson Associate.co.uk Michael Smull: Individual tools, Relationships Learning communities.us SDAUS.com Life Course Framework Supportstofamilies.org Mylife.com Personcenteredplanning.com Mysupport.org or com Dream, work, fun! Parent mentors.

8

Group 10: No Ruts Rut: doubt, discouragement, holds us back, self sabotage Decreased inspiration, as fulcrum, decreased encouragement, decreased action. RHCs. Plan excitement then decreased ideas. What can be done to make it happen? Accountability? You can do anything. Wide open. Not reality based, Denigrating experience of

person? Person does not know how to speak up> Directed to most realistic goals. Starting at the first bar. Stuck in a rut, control, back off , service not on board Go straight to doing it, step out of comfort zones. Idea: one person to set up jobs, another to coach. Look at past experience, devices, how about now? Who are we putting out there?

How can you give them permission to make a mistake Challenge: Do it. Encourage residential to assist with employment and vice versa, to sit together and

empower, help each other and collaborate Team building around the individual who we are here for. Competitiveness sucks energy Cooperation: one more meeting Direct service staff need this type of experience. We need funding for this. Since training went online, no one gets trained During PCP honest communication Make sure we are building accountability and follow up. Part of the process is to

check in. Don’t leave family and caregivers. Make it a team. Don’t lead the person/advocate not just family and caregiver Focus on staff gifts, find who is good at one piece, share the process, honor who

they are. More interpersonal training. Broadening the circles.. Plan useless without responsibilities. Reach out, cold calls, ask for lunch, make relationships More training and job carving. PPC from outside the system, New ideas and networking. 70% of jobs come from

there. Community access can use help too. County guidelines. Agencies look at ourselves as communities.

Group 11: How do we build a whole life? Services don’t create a life. Get people out and about to make friends-just like the rest of us. Being a part of normal life.

9

How do we facilitate intimate relationships? Educating everyone else Have parents get a whole life so their child with disabilities can have a whole life. Reciprocity-if people with disabilities want to be invited, they should do the inviting. What everyone else does-employment for adults. Don’t create barriers to natural

employment settings. Having a job coach can sometimes do this. Focus on interests. Build self-esteem and self worth. Build skills of the team and the person. Don’t presume someone wants/needs services Give dignity of risk Don’t hold people with disabilities to a higher standard. One action at a time Educations, conversation, repeat over and over.

Group 12: How can Person Centered planning become culturally competent? Cultural competence training for facilitators. Open doors does this Person centered planning with mentors as someone in community of same culture. Group consciousness. Facilitators welcome at some trainings, Open Doors. Recruit planners from different cultures.

Group 13: Activating and implementing plans (How, who, accountability).Present: Jan Engelhart, Sally Sehmsdorf, Socorro Wright, Ginger Kwan, Noah Seidel

Connect person centered plans to service plans Ask counties for additional individual technical assistance to do follow along to

see if implementing Implementing cannot be informal. Realizing that plans can change-building flexibility into implementation. Review the plan: How are you working on your plan? What has happened? Managers job in adults services is to see that the plan is implemented. Think person centered “action” plan Skill set for person who does the community work for and with the person. Build

this role in. Check back one month after the initial plan. Celebration as a way of checking in. Having “Career Path Parties.” Have families participate in other people plans. Compare the past plan with the new plan-do this annually in review. Add goals

and accomplishments from previous year. Do PCP before DDA assessment and share at ISP. People could present their own accomplishments.

Learn local community connecting for people. Think about local “welcomers.” Where people can make a contribution?

10

Bring together those community connectors. Get a base of people together. Each person chooses a certain number of connectors.

Use respite dollars to do the implementation of connecting. Have staff person in agency facilitate connections Could community education and information agencies contracted with the

county have a community connector? Could use interns from community colleges to do connecting. Use a “community organizing” approach. Have training on community

organizing. Have a set action plan saying who will do what. Keep it active on a single piece of

paper. Pull out barriers and strategize around them PCPs for families with limited English capabilities. Interpreter needed doesn’t always translate. Sometimes group PCP first Needs person who understands the culture. Inviting questions-cultural relative Discuss cultural clashes. Modify-go with the flow. Need investment Sometimes afraid to reject offer of PCP How do we train and educate facilitator? Prepare material in a way that makes sense Look at community connectors that are natural in organizations. Community Connector is part of the person centered planning meeting Think about what types of connections are needed for the individual planning

teams. Navigator is different than connector. Navigator helps figure out how to get to

places. Connector finds people and groups and connects with them with team. Thinking about changing organizations to align staff. Systems change within organizations Goals in service plans need to be connected to PCPs. Job coach has a

responsibility. Plan should be fluid-accountability takes this into account. Think multiple plans.

Plans in motion. Listen to people and see if plans are good for them Dysfunctional organizations have dysfunctional follow through or

implementation. Do community connectors training agency staff? Is it a shift in what a service provider does? Make it easier for natural members of the community to be a part of a person’s

life. Think about people with disabilities, mentors, connectors.

11

Part of PCP is doing a map on how the goals connect with the education or service plans.

Closing Circle

Facilitators should be culturally competent. Person centered planning should happen at all levels, PCP process is as varied as people are. Big barriers is no or low expectations for people we support Everyone could facilitate each other’s PCPs- Advocates, facilitators, supports and

persons with intellectual disabilities. This would have a multiplier effect. Fresh ideas can come from those not immersed in the work. We are impressed by DDAs willingness and commitment to Person Centered

Planning. It is not up to the person to change the plan but to accommodate the person. There is a difference between a facilitator and a community connector. Implementation should happen at many levels with partners working together. The plan belongs to the person, not the system. The person has the right to change

the plan. Culturally there are great differences. Person centered planning may need to be

presented differently in various cultures. If a facilitator doesn’t work well with one person/family, they might work well with

another. We need to take one tiny step. We don’t need to wait for big step to move forward. We must dare to try new things. Power lies in embracing values of plans in our own lives and the broader society. How can technology support our efforts? How can we make plans more visually

accessible? What works for the individual in terms of incorporating technology? How will we make it work? How do we bridge the gap between strengths based Person Centered Planning and

deficit oriented systems. If eligibility related to deficits, how do PCPs relate to service level?

Are we talking about planning for a person or a systems tool? Framing language. Find common language. How do we do this amazing work with huge agency turnover and budget cuts? We can’t be reliant on the system for everything.

Day 2: April 24

Designing our Futures: What shall we do going forward and how will we know we are moving towards our shared vision and making a difference?1. Identify groups to work on ideas from day 1 and see if there is any useful, viable,

shared or individual work?2. Breakouts

12

3. Sharing emerging plans and ideas.

Group 1: Labels and Person Centered planning: Eric, Karen and Jan

Questions and observations: How are people with intellectual disabilities included in this Symposium and other

processes related to our work? Are beneficiaries par to the process or subtly excluded? Barriers include transportation, designing policy and implementation groups in ways the people with intellectual disabilities are included.

The term “self-advocate” implies that the person is representing his/her own self. This is a misnomer. Advocates represent a larger group. We should use the terms “advocate,” “activist” or “activist advocate.”

Advocates should plan and lead PCPs. Advocates should model and support others to be activists in Person Centered

Planning. We should get Person Centered Plans for Self Advocates of Washington, People First and SAIL members.

People First is already developing current and future leaders though leadership training and Youth First. How do we bring these existing and emerging leaders into the PCP process?

Should advocates get paid for their efforts in legislative advocacy and to attend meetings like this one? There is disparity when most attendees to this Symposium get paid and many advocates cannot afford to be here

Tangible outcomes/steps:1. Everyone in this room commit to using advocate, activist or activist-advocate rather

than self-advocate. Language matters.2. Obtain a mini-grant to support advocates to learn and participate in PCP facilitation.3. Obtain funding and tangible supports such as transportation to support advocates in

doing legislative activism.

Group 2: Developing a toolkit

Questions and observations: Lets get together, have dinner and talk about:

o Overviewo Why do you want to get together and talk about…o Links to resourceso Invitation lettero Pre worko Talking points

Why? It is about power. The idea of putting individuals in charge of themselves and their family

13

We need to think about accessibility. Areas of accessibility include web, handouts, Facebook and applications.

There should be a mechanism for community education. We need to help people gain a person-centered perspective and planning beyond the disabilities/medical community. Our work needs to be experienced from a lay person perspective. This will support our efforts. We can also learn from this perspective.

Simple activities to illustrate the process Thrive success, universal thriving. Language considerations: group specific language.

What tangible steps/outcomes:1. Each us experience a person-centered plan by having our own plans2. Identify a hook: “Its about me.”3. Provide good examples.4. Design language that is more accessibly 5. Make the plan and planning fun!6. Simplify the plan.7. Partnership with the group by practicing facilitation skills and offering ourselves up

for practice.8. Approach Roads to Community Living for funding options.9. Collect and send us links.10. Consider the dream.11. Host events.

Group 3: All our kids should have a PCPQuestions/observations and discussions Create a profile or tangible book that follows the child from year to year. “Needs” to

be successful. Cross reference kid to kid. All kids write a page. This builds self-determination. Document should be dynamic. This teaches kids to advocate for self.

Google Helen Sanderson Visual component Connect with schools that are working on this. Employment: Inclusion and integration are imperative in the schools. Use parents as natural resources. Use clubs and groups. Students must be involved. We must value THE DREAM that the student has. Get parents involved through parent groups. Get started early. Use as a senior project Support students in keeping supports in place “Person centered parenting.” Start talking about “disability is normal.” What do you need to be successful? Not about disability.

14

Culture and values Development stages have aspirations that are different. Could be so grounding. Defining your own success! What makes me tick?

How do we start? Parent groups Have a document that defines “what?” Spend time exploring Must come from top down Clubs in school Internships with M. S.

What would hurt/help? Behaviors: Decrease graduation rates, Decrease inclusive environments. We have

alternative high schools. Bureaucracy: paperwork, motivation, lack of defined steps. Organizing: researching what others have done and what would work for us Being brave-stepping, accountability

Tangible steps/outcomes1. Michele Lehosky, PAVE2. We will see increase in positive outcomes and graduation rates.3. Increased relationship building4. Decrease in negative behaviors5. Increase in self-determination and sense of responsibility.

Group 4: RCL reinvestment funds

Questions, observations and discussions What is RCL: Roads to Community Living has mini grants to seed projects? Outcome: One-year time frame to formulate ideas and get going. Projects started,

each identifying outcomes, reported at next symposium. Who is involved: Local community Partners Next steps: 1) Approve projects in DDA, 2) Who will take the next step? 3) Who will

lead project? Ideas for reinvestment

1. PCP Symposium next year: Bring accomplishments/actions from this group to next year symposium-accountability and learning together

2. Bring together behavior specialists with PCP facilitators3. RHC pilot4. Learning communities for PCP facilitators across the state. Cohort group for PCP

facilitators. 101 basic practice. Parent leaders, advocates multicultural and

15

bilingual. Taking action-Mentoring, community connections. Tim, Susie, Mary, Brian, Dee Dee can help.

5. Local partnerships with families who enter for eligibility-conversations about what they want in their life first in community. How can services support this? Clear idea of what to get out of system. Group family process. Starting in Clark County? Snohomish County?

6. Person Centered Thinking Training for families, case managers, providers, general community, elders etc. Who else in the community is doing this? Introduction, make a choice of how to use pcp from wherever you are. Partner with community organizations, toolkit meeting.

Group 6: Get DDA step up to speed on with PCP

Observations, discussion, and questions Train in communities Experience person centered planning yourself. Do a plan on you. Watch a PCP. Start with a team and move to an individual. Overview of planning tools: MAP, PATH, etc. Participate in planning in the community. Provide a directory of planners. Little book of PCP by John O’Brien How to integrate already existing PCP into current care tool Ohio-Imagine project Train families to do PCPs. Train families to educate. Training advocates to be facilitators CRM to CRM Build interview skills. Get trainers ODDA who are training experts. Testimonials Clear expectation the CRM are not Plan Facilitators Mandatory review periods

Refresh who reviews, who are stockholders and how selected.

Convene group to review all DDA policies to see if they are in line with person centered planning

Group 7: Expanding FacilitatorsObservations, discussion and questions Make sure we pay attention to the quality, integrity, sacredness, mentoring,

teaching and training. Being inclusive of multiple approaches. Develop basic element values and implement as community practice.

16

Build feedback loop, input from decision makers, learning from experience. More cultural outreach, especially advocates. Develop more understanding of facilitation styles and best practices. How do we build relationships between families and planning? Learn from other facilitation styles-mentoring Bartering support Loose structure

What Is next?1. Feedback on toolkit2. Convene for collaborative meetings to build local capacity3. Group development, 4 meeting process: Tm, Lisa, Sally, Jan, Judy, Dee Dee4. Send e-mail to everyone in this group

How will we know: We will identify how we might track and share what we are doing and learning going forward.

Indicators of success Increased community members in people’s lives Decrease in restrictive procedures 75% of us have our own PCPs by next year. Adequate number of well-trained and competent facilitators to meet the increasing

demand. Baseline and goal More demand increases development of more facilitators from family. 20 Activist advocates and this Symposium next year. 20 community members doing PCPs next year. Celebration of our success. Families call to say we have a person centered plan, these outcomes, who should we

go to vs. calling in a crisis. Facilitators’ guild which includes activists, parents and a cross section of community

members. Statistics from other states: Where do we stand? What can we work on? Big bird is teaching about Person Centered Planning to everyone on Sesame Street.

17

Person Centered Planning and the “new final rule” from CMS

Those parts of the new final rule from CMS (§441.725) that are about person centered planning: The person-centered planning process is driven by the individual. The…” process:

(1) Includes people chosen by the individual.(2) Provides necessary information and support to ensure that the individual directs the process to the maximum extent possible, and is enabled to make informed choices and decisions.(3) Is timely and occurs at times and locations of convenience to the individual.(4) Reflects cultural considerations of the individual and is conducted by providing information in plain language and in a manner that is accessible to individuals with disabilities and persons who are limited English proficient, consistent with §435.905(b) of this chapter.(5) Includes strategies for solving conflict or disagreement within the process, including clear conflict of interest guidelines for all planning participants.(6) Offers choices to the individual regarding the services and supports the individual receives and from whom.(7) Includes a method for the individual to request updates to the plan, as needed.(8) Records the alternative home and community-based settings that were considered by the individual”...

“…The written plan must:(1) Reflect that the setting in which the individual resides is chosen by the individual. The State must ensure that the setting chosen by the individual is integrated in, and supports full access of individuals receiving Medicaid HCBS to the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community to the same degree of access as individuals not receiving Medicaid HCBS.(2) Reflect the individual’s strengths and preferences.(3) Reflect clinical and support needs as identified through an assessment of functional need.(4) Include individually identified goals and desired outcomes.(5) Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS.(6) Reflect risk factors and measures in place to minimize them, including individualized backup plans and strategies when needed.(7) Be understandable to the individual receiving services and supports, and the individuals important in supporting him or her. At a minimum, for the written

18

plan to be understandable, it must be written in plain language and in a manner that is accessible to individuals with disabilities and persons who are limited English proficient, consistent with §435.905(b) of this chapter.(8) Identify the individual and/or entity responsible for monitoring the plan.(9) Be finalized and agreed to, with the informed consent of the individual in writing, and signed by all individuals and providers responsible for its implementation.(10) Be distributed to the individual and other people involved in the plan. (11) Include those services, the purchase or control of which the individual elects to self-direct, meeting the requirements of §441.740.(12) Prevent the provision of unnecessary or inappropriate services and supports.(13) Document that any modification of the additional conditions, under§441.710(a)(1)(vi)(A) through (D) of this chapter, must be supported by a specific assessed need and justified in the person-centered service plan. The following requirements must be documented in the person-centered service plan:

(i) Identify a specific and individualized assessed need.(ii) Document the positive interventions and supports used prior to any modifications to the person-centered service plan.(iii) Document less intrusive methods of meeting the need that have been tried but did not work.(iv) Include a clear description of the condition that is directly proportionate to the specific assessed need.”

19

Person Centered Planning Symposium - April 2015Make a Difference - Shift and Share Presentation

Introduction

We have been doing a project called Make a Difference, the work of John O’Brien and Beth Mount. This work addresses what Beth Mount calls the only real disability there is--loneliness. In this work, one person who provides support pairs with a person receiving support to help this person act as a full citizen who makes a worthwhile contribution to their community. This work engages our minds, hearts and hands as we help people form meaningful relationships with (typical) other people in their communities. By participating thoughtfully and strategically in community activities, the person providing support helps their Learning Partner contribute their gifts, talents and strengths so that they become valued members of those communities.

Good direct support encourages each person in the relationship to be all that they can be. The focus for these Learning Partners is getting to know each other in everyday routines, thinking about gifts and interests and where those might be welcomed, going together into new experiences in the community, reflecting on how this part of their learning journey went, and adjusting support for the next steps. The workshop strives to inspire, educate, and support both partners as their learning progresses. Those participating in the workshop form bonds as time goes on, and deeper sharing and creative solutions can be found as individuals and as a group.

This year we have added an organizational track to the workshops. One of the things we learned in the first year was that it was very difficult for Learning Partners to do their work well and deeply without the support, resources, and focus of their organization.

We have two agencies who have volunteered to participate in this track and who are courageously going through a process of reflection on what it takes for an organization to really support this person centered work, and what needs to be addressed in organizational culture, training, values, structure, and staff for this to become a sustainable reality. They have identified some areas of change to focus on, and are currently moving that work along the same sort of learning journey mentioned before with workgroups composed of program participants, direct support staff, and managers.

20

What we have learned

Some things we have learned from facilitating this project and working with Learning Partners and management staff:

This work is simple but not easy, as daily schedules, multiple people to support, regulations, staff shortages and other life factors eat up time and energy.

Really getting to know one another between the Learning Partners makes all the difference in the world and builds trust, a necessary ingredient for this work to be successful.

There is a disconnect between the values that people providing support say they agree with and the actions they take each day on the job.

There is still an “us-them” dichotomy between people providing support and those receiving support--people receiving support use a different filter when considering activities and goals for the people whom they support.

To wholeheartedly embrace this work, organizations will experience disruption to the ways in which they have operated for so long. If they are flexible and resilient, they will experience great success in doing this work.

Without support from managers all the way up the line to the executive director, this work cannot be truly successful.

Without thoughtful and effective recruitment, training, orientation, mentoring and coaching, staff will not embrace this work and it will not be sustained.

For people receiving support, having their entire staff team support them and contribute ideas for success and problem solve when obstacles arise helps them have a better life.

For direct support staff Learning Partners, having the team be part of the support, ideas, and problem solving makes a huge difference.

People receiving support experience the most success in connecting to the community when their Learning Partner is someone who is well connected to the community themselves and/or is comfortable and willing to try new things.

Bringing courage and creativity to this work increases the chance of success. The work that is being taught and promoted in Make a Difference has the power

to transform people’s lives: staff and people supported alike. It has the power to regenerate and reignite organizations in terms of their purpose and commitment. We think, long term, that it will have an impact on turnover, hiring difficulties, and quality of practice.

There is a huge disconnect between an organizational focus and structure that supports this work and current regulations and evaluation processes. This has forced organizations to give up in the face of being asked to adhere to a different set of criteria and standards vs the underlying values and activities of person centered work.

21