Unlocking the Code of Effective Systems Change

Sponsored by
The Community Living Exchange Collaborative at ILRU
and
The Technical Assistance Partnership Operating the
National State-to-State Technical Assistance Program for Community Living

Unlocking the Code of Effective Systems Change
January 11 – 13, 2005

NOTES

Opening Session: January 11, 2005

Welcome: Darrell Jones
It has been an ILRU dream to assemble a group of bright minds in one spot to talk about the topic of effective systems change. It’s something that deserves a real block of time and some real considerate attention.

ILRU staff nominated participants and the final selection was based on the desire to assemble folks that are thoughtful and sensitive workers and thinkers—people who would add substantially to this conversation. Budget limitations did not allow for everyone nominated to be selected.
Following introductions, facilitators will explain the process, how the topics have been framed and structured, and how this meeting fits in with the national dialogue ILRU is having with a number of folks.

Welcome: Richard Petty
Those of you who know ILRU’s history and that of our key partners in the first round of the Real Choice Systems Change project will know about our continuing interest in service quality and service effectiveness, flexibility and consumer direction and won’t be surprised of our interest in this topic. … You’re here because you’ve been part of programs that have demonstrated interest and commitment to creating lasting change and effective programs that really do hold the promise of making a dramatic difference in your states.

We believe that you are some of the cutting edge thinkers of community-based services. We believe that now is the time to pause to take a thorough look at what is distinguishing programs that have been truly effective as opposed to those who have just used the rhetoric.

We’ve certainly seen many programs that have been effective at policy and at the operational/technical aspects of their work—and that’s laudable. But, there are some programs that have gone even further. We are beginning to see that some programs have distinguished themselves for looking at quality, flexibility and consumer direction as part of a good business model. It’s the right thing to do; but, it’s also a good model that ensures overall effectiveness and cost effectiveness of programs.

We are also beginning to see programs that began with clear vision and a clear set of values that were truly effective in involving consumers in the leadership of the projects. Also, we’re seeing programs that are effective at working across organizational boundaries and disciplines. These are areas where some programs are establishing themselves as truly different.

At the same time, we began to see these practices supported in business literature. We also began to see other people in the field focusing on these principles—people like Michael Kendrick, who is working in them internationally.

The papers Michael developed for this colloquium—and the colloquium itself—are interim steps in a process where we hope to be able to drill down and look thoroughly at what’s really effective in creating quality community services. By the end, we hope you will have affirmed some of the things in the papers, rejected others and looked well beyond them at new and different ideas that may take us even further.
The papers are a starting point. As we work through this, no doubt we will go much further in many areas. If you, like me, are high on the compulsivity scale, be assured we’ve seen the process we’ll participate in this week work well in other settings.

As next steps, we intend for there to be other iterations of these papers, and we intend to work with others to refine and drill down as to what really is effective in other states.

Welcome: Lex Frieden
Sometimes I get the feeling that I’m going in circles; personally, and when I’m working with states. We keep running into the same roadblocks with personal assistance needs. I don’t think that has to continue.

ILRU and The Community Living Exchange have tried to find a spiral pathway to the objectives we have in mind. We can’t deal in a world that doesn’t exist. There are certain realities. One of them is the fact of disability and people needing help. The second one is the economy. We can’t get away from them; but in-between there’s a lot of space. We need to get in that space.

Policy is not intractable—it can change. You only have to look back a couple of years at some of the things that have occurred in CMS. You don’t have to look back very far to see some dramatic changes. That agency and the networked state agencies are ready for more changes. That’s why we’re here.

We want to share with a wider network of people (more than those of us in this room). Through this colloquium we hope to have more papers and more ideas to share. But, this exercise won’t be the end of it. If, this week, we can contribute something to moving away from a dead-end circle and toward a spiral, then I think we’ve achieved a lot.

Overview: Michael Kendrick
The origins of this event go back to discussions about what works/what doesn’t. It may surprise people, but we don’t really know what works. We’re making this up as we go along. Until the last part of the 20th century, society had not experienced a reliance on technocratic service systems. We are in a novel and historical social experiment which nobody really planned.

Any assumption there’s a formula we’re working from would be misguided. People have found they have to think it through themselves. The way we’ve moved ahead in the past is by looking at our problems through the filter of our values. The thinking process isn’t over. But, baby boomers are starting to get tired. There are formidable challenges for the next generation.

We do make progress. It is a spiral. Nothing in nature yields without a cost. So, if you want to make headway, you’ve got to invest in the thought process—invest in trying to think our way forward and then identify if there are further investments that need to be made. (I think of investments as things that are worth something.)

We may find that these few days are seminal—that they pull together some threads that needed pulling together. This meeting might be like other occasions we can think of that didn’t appear to be promising at first, but turned out to be important. With a good faith effort, this may be one of those moments.

You are very experienced and seasoned people. We will make a difference. Do we have a right or are we guaranteed to make a difference? We don’t know that. But, if you do the right thing, you’ll probably come out right at the end.

The papers were developed as a stimulus/catalyst. A lot of people don’t want a clean slate to fill in. The papers are a way to get into the issues. They’re intended as a starting point, but certainly not something to stay with. We’d be disappointed if, at the end, we’re still circling around the papers.

We anticipate more papers—some kind of paper that documents what was discussed here to give others a flavor of what we went through. As part of this process we’ll ask for ideas and suggestions for activities/initiatives that may follow these discussions. We will consider them developmental investments—if we were to do those, it may be a help. We’re interested in knowing what they are; even if we can’t follow through on all of them, perhaps we can tackle some. Also, we will keep in mind that while ILRU is providing leadership, there may be follow-up that’s in your hands or others who aren’t here. We’re part of a bigger network.

We weren’t sure what papers to write. The ones we’re working with this week are those that survived an informal process. We didn’t have much of a debate. We thought it made since to start with examples people are familiar with and get some guidance about conclusions from their own experience.

We don’t anticipate they will survive very long, so don’t feel bound by papers. They are a reference point. We are trying to tap into your insights. The papers are a way to stimulate us.

One caution … the rhetoric of our field suggests we’re clearer than we really are. We have concepts that we don’t know what they mean, but we’re pleased by them. So we repeat them ad nauseam. We’re actually profoundly confused and faking it. We’re a bit of a fraud on some level, and that is unnerving; which is why rhetoric is so attractive.

Practical people need more than rhetoric. They need to be persuaded. So, we’re going to open up a Pandora’s Box by opening up questions that may be unclear and possible divisive. But, that’s often what gets us into new ideas.

In many ways it would be good to leave matters alone. On the other hand, we want to make progress. This isn’t new. In matters of leadership there is uncertainty. We face a certain amount of uncertainties, but we’re just going to have to move past them to get some consensus that gives us a way to move forward.

Group 1 – Effective Community Programs- Kaye’s Notes

Activity #1: Review Kendrick’s components of quality service

Discussion: Introduction
After introductions, the group agreed to the facilitators’ suggestion to use the Kendrick paper as a springboard for discussion. The first comments were directed toward Kendrick’s definition of quality in the opening paragraphs of the paper. Several raised concerns about the statement: “… the term quality is equated with the finest of human achievements, and so a synonym for it would be excellence.”

Comments included:
. Quality is defined by the user. It’s in the mind of the beholder.
. We need to be careful about defining what we think other people should want.
. Some participants had concerns about the statement: “These global themes are that the service should: (second bullet) Support the individual to be as much a part of the community as possible.”

Comments included:
…as possible” should be replaced with “as they wish to be.
. The term “community” has become part of the rhetoric, but it’s dangerous to assume everyone uses the same definition of it. Is a group home part of the community? (Note: There was some discussion/disagreement around this question, with a small number of participants suggesting that group homes and other communal living arrangements can be part of the community.)

Discussion: Key Components of a Good Community Service

Following the discussion about the intro to the paper, the group turned to Kendrick’s key components of good community service. By way of process, the group agreed to proceed through the list to determine agreement/disagreement or to add or clarify language. There was agreement to avoid “wordsmithing.”

1. The service is embedded in and governed by the community.
A few in the group agreed with this statement. Others objected to the words “governed by,” stating that some communities have standards and may govern services with goals that are not acceptable. There need to be some standards across the state and across the country. As one participant put it, “I look at services in one way and community infrastructure in one way. Services are individual—ccommunities are universal. I want communities to govern the universality. I don’t think they should be governing human services.”

2. The service values the people it serves.
There was no objection to the statement, but a couple in the group said they don’t really know what it means.

3. The service supports the social inclusion of its users.
The group didn’t disagree with the statement, but some members felt it doesn’t go far enough in addressing underlying issues such as:
. The service systems we’ve created really interfere with natural supports.
. There’s a more important comment to make … people are still segregated even though they are in the community. They’re still lonely as hell. They’re still not part of the neighborhood.

4. The service is and can be personalized.
General agreement. No discussion.

5. The service seeks to understand the individuals and what they actually want and need.
General agreement to combine this statement with #6. One participant commented that the situation is “paradoxical.” We need to have elements of uniformity as well as elements of personalization.
The CMS representative stated that the paper does a great job of emphasizing the needs of individuals. However, it does not speak to the need for an equitable distribution of resources when there are people with competing needs (balancing individual needs with needs of the community).

6. The service supports self-direction/consumer-managed options.
Summary of comments:
. In the adult service system, we expect people to make informed choices after they’ve had 12 years of Special Ed where informed choice is not the norm.
. Need to distinguish between consumer-managed organizations and consumer-directed services. Add some language that distinguishes between people and organizations.

7. The service provides what meets crucial and fundamental needs well.
There was neither strong support for nor disagreement with this statement or the explanatory paragraph in the paper. Generally, participants were unsure what it means.

8. The service uses methods that are consistent with what best suits the person and her needs.
Consensus that this could be combined with #4 and #5 as the concepts are the same.

9. The service uses theory and models that are demonstrably effective.

Summary of comments:
. I like it but it doesn’t go far enough—it’s not just about service. Take, for example, the impact of segregation on somebody. It may be about the environmental issues somebody experiences.
. It seems to confine you more to what’s already been researched.
. At the same time there needs to be innovation, experimentation, inquiry and research.
. The quality evaluation and accountability are not there.

10. The service is in the “right relationship” with those it supports.

Summary of comments:
. I don’t know what it means in practice. I don’t understand the conceptual idea of the “right relationship.”
. I think different people define it (right relationship) differently—treating people in an ethical, respectful manner. I dislike term because it’s from a religious tradition that all people don’t understand.
General consensus that #10 can be combined with #2.

11. The service supports its service users in acquiring valued social roles and positive social images.
There was general agreement with the concept; but disussion subjective qualities of words such as “valued” and “positive social images.” Who’s deciding what’s valued? By whom? Does society value the same things a consumer does?

12. The service has the routine capacity to be responsive, flexible and changeable.
There was strong agreement with this as a component of good community service. The notion of “routine capacity” is especially important.

13. The service helps people grow and develop.
There was general agreement with this component which, some said, is similar to #4 and #5.
One participant felt that the paper overlooks an important area of learning, skill development and even knowing what’s out there (the consumer). Another suggested that this component needs to be tied back to personalization of services based on need. Another suggested that there’s also a need to recognize when a consumer is not going to grow or develop in a particular area and to adjust expectations accordingly.

14. The service appropriately uses and blends formal supports with informal (natural) supports.
There was general agreement with this component.

15. The service selects and nurtures the right people in service roles.
Some participants had a problem with the term “right people in service roles.” Who are the “right” people? How does this component relate to the previous one about natural supports? Some suggested that there should be discussion about values in any discussion about what’s “right.” One person noted there seems to be a lack of emphasis on training and assessing people’s capacities.

16. The service is well led by people-centered leaders.
One participant questioned whether this actually belongs on the list (it’s a means to an end as opposed to a component of quality). Others felt it belonged as a component. One group member suggested adding “mission” and “vision-driven” to the characteristics of people-centered leaders.

17. The service shields service users from invasive and unhelpful bureaucracy.
The group didn’t disagree with the concept, but several members felt it could be stated more positively. Suggestions included changing the word “shields” to something less paternal and finding a less offensive word than “toxicity” in the narrative.

18. The service supports people with personalized safeguards.
There was some sense that the bulk of the narrative hid the most important concepts of this component. There was agreement that the most important sentence in the narrative is: “Intentional and personalized safeguards can be crafted and put into place that address only those matters that are important to the person.”

19. The service is well administered. There was general agreement with the notion that administration should be seen as a support function. There was also agreement with one participant’s observation that “someone can administer very well some very bad services that are completely unresponsive.” The quality of administration doesn’t matter if the services are bad.

20. The service is cost beneficial. There was general agreement with a couple of members stating there is probably a need for more work around defining what cost benefit is in a human services context (related to the amount of services people want versus what they get, if we hurt people by “throwing too much service at them,” the cost of providing services to a growing aging population).

Activity #2: Identify active ingredients of positive change

Group 1 devoted the afternoon of the first day in a brainstorming session focused on what are the ingredients of positive change. The following is a list of ingredients that emerged in the discussion.
Active ingredients of positive change include:

· having a governance structures that enhances mission and vision (engages consumers and families, etc.)
· the ability to engage partners to leverage additional resources (and speaks to vision and mission)
· understanding limitations
· quality, accountability and evaluation
· integration, coordination and collaboration (engaging partners—services don’t exist in a vacuum)
· creativity—the ability to leverage “non-traditional” resources
· an appropriate balance of flexibility and standardization
· a distinction between services that are intended to fade away and more permanent supports
· the actual existence of services (in some areas)
· the ability to exit from strategies for which there are newer/better ideas
· the recognition/acceptance that service providers also serve as advocates (and, ideally, are not concerned with maintaining business)
· focusing on workforce development –specifically recruiting and training people to provide leadership and/or support services
· taking into account technologies that can help
· fostering natural relationships that occur in the community
· recognizing the useful role of “key informants” (family, friends and others)
· making good use of data…but isn’t trapped by it (and uses it to get rid of bad models!!)
· having a strong outreach component
· training
· rewards/incentives
· enforcement
· accountability
· shared history, vision and direction
· ability to change based on evidence that things aren’t working
· systems thinking
· team learning
· mastery
· shared vision
· money/resources
· consumers routinely involved in a meaningful way from the beginning
· consumers knowing what choice are important (and supporting them in making them)
· providers being free from conflict of interest
· willing leadership
· buy-in from stakeholders throughout the processes
· recognizing there will be unintended consequences and having a system flexible enough to deal with them
· truthful communication
· collaboration
· transparency
· investing in the people who are providing support (workforce development)

On Day 2, as they reviewed the list of active ingredients from the first day, a participant asked the group to consider whether ADAPT’s minimum standards for a national attendant services program (see next page) have any relevance to the active ingredients list.

The ADAPT principles earning the most discussion were:
· eligibility based on functional need,
· co-pay and cost sharing for people with higher incomes, and
· the ability to delegate health-related to unlicensed personal attendants.

There was quite a bit of discussion about whether these principles were either an active ingredient or measure of quality. The general consensus was to add something to Kendrick’s paper to the effect of “personal assistance services should be available or supported.” Someone suggested adding it as a distinct component. Then, there seemed to be agreement to incorporate personal attendant services to Kendrick’s original #7 component.

Activity #3: Identify obstacles to positive change

Group 1 devoted part of the second day talking about obstacles and opportunities. The following list features highlights of the discussion. (NOTE: Unlike the ingredients list, participants did not have a chance to review/comment on this list.)

Barriers to positive systems change:

· There isn’t enough money, what we do have is not flexible, and distribution is a problem.
· Systemic inertia—old habits die hard and people benefit from the status quo.
· There is a shortage in direct care workers and the system is reluctant to acknowledge the value of support professionals.
· Lack of public awareness about the new service model. Families resist change (still think nursing homes are the answer) and cling to stereotypes passed down from one generation to the next.
· Lack of system planning/preparedness to respond to families urgent needs.
· Lack of awareness for the need to plan for life transitions (aging, accidents, etc.)
· Methods, models and tools are outdated and policies/procedures are adapted from old models.
· Service provision devalues individuals (the lack of a customer service philosophy—service recipients aren’t treated or valued like customers)
· The prevalence of a custodial care mindset, including the perception that people are frail and helpless. (“We’ll take care OF you” mentality.)
· Lack of sharing across agencies.
· Complicated waiver processes (getting waivers approved in the first place).
· Silos within given states (all disability agencies) and in the advocacy community.
· Crisis in leadership. Absence of vision. No sense of adventure. Risk avoidance.
· Having to make people eligible for nursing home care before they’re eligible for community-based services. (The service model is not a preventative model—it’s crisis oriented, reactive.) The institutional model is the criterion on which everything else is based.
· Inadequate accessible, affordable, quality, integrated housing.
· Inadequate transportation (lack of coordinated transportation systems).
· Restrictive legislation regarding nurse practices, certificate of needs, agency of choice.
· Lack of an appropriate federal rule pertaining to a standard functional definition of what an institutional eligibility is.
· Building community infrastructures is not in the Medicaid vernacular, it’s not in the Medicaid state plan, and it’s not considered a service. Medicaid doesn’t provide matching funds for it.
· Lack of resources and experience in community development (housing, transportation). These things have been difficult to enable under the Medicaid system.
· Provider resistance to self-directed service models (and providers are powerful lobbying groups).
· The higher education curriculum is hasn’t moved beyond the ‘60’s. A whole generation is graduating with tools from the past (for rehabilitation). Higher ed hasn’t been included in the systems change.
· Guarantor/guardianship laws can take away choices (sometimes it’s lack of information/education on parts of judicial system, etc.).
· Families oppose closing state schools based on past promises and lack of new information.

Activity #4: Identify opportunities, investments and activities that would contribute to positive change

The group spent its last time together brainstorming opportunities, investments and activities that would contribute to positive change. After a while, several major opportunity areas emerged, and the group was able to associate a list of proposed actions for each of them. The following is the result of that process.

Leadership Development
· Develop a national leadership academy on quality home and community-based services
· Recruit/develop people with disabilities as leaders (beyond the DD community)
· Recruit/develop policymakers

Professional Development, Higher Education and Consumer Education
· Pre-service education and continuing education for folks in the industry
· Training for people with disabilities
· Faculty development
· Create model courses
· Develop a small course on what AT is available and how to access it and how it contributes to home and community-based services
· Recommend to CMS & HRSA that they invest in personnel preparation on consumer direction and quality through the Systems Change grant process

Accreditation, Certification (of agencies and providers) and Quality Improvement
· Influence accreditation and oversight bodies to include quality from the consumer perspective
· Link quality assurance with quality improvement
· Make accreditation results available to the public
· Get states to establish a variety of rewards and sanctions to encourage quality
· Get states to support quality improvement

Networking for Coordination and Cooperation
· Get CMS technical assistance providers to promote more networking between states.
· Strengthen interactive components of the HCBS website as well as elements of the site that promote innovation, news, etc.
· Encourage formation of cross-disability/cross life span coalitions

Products and Materials Development (business models, text books, etc.) and Dissemination
· Review existing products/materials
· Update curriculum
· Update text books
· Update and creating self-evaluation tools and techniques
· Create self-direction training materials
· Develop slick success story publications to tell the story
· Create fact sheets for legislators
· Promote good business models

Policy Opportunities and Influence
· Explore alternative funding and service delivery models including the Older Americans Act
· Award planning grants
· Develop some mechanisms to help CMS incorporate consumer involvement at all levels
· Promote a national agenda for long-term care (think tank)
· Educate state and federal legislators
· Use the fall national summit of the National Alliance for Full Participation as an opportunity to stress quality and consumer directed services
· Provide strategic assistance to states to implement CASSA legislation (an individualized approach)

Research and Evaluation
· Immediate action: Solicit “big three: outcome data from current grantees
· Establish rigorous research processes where we evaluate a lot of the more innovative models to really show how they affect quality as measured by consumers—an evaluation protocol (to decide if we should really embrace them as a new paradigm to move to)

Information and Technology
· support and encourage HHS to fund information and technology (specifically, the creation of broad-based information portals)
· push information through technology
· using technology to reduce human assistance and enhance quality community-based services
· creating HIPAA compliant methods to reduce repetitive information for consumers

Activity #5: Make recommendations to advance positive change

Time ran out on this activity with only one firm recommendation offered. Nonetheless, many of the group encourages ILRU/CMS to think of many of the opportunities and investments as “recommendations in the rough.”

Recommendation:

That CMS invest in personnel preparation on consumer direction and quality through the Systems Change grant process.

Extra! CMS Update from Melissa Hulbert

Melissa Hulbert, director of CMS’ Division of Advocacy & Special Initiatives, was unable to stay for the full second day of the meeting. Before departing, though, she responded to the group’s request for an update on CMS activities.

Referring to an earlier discussion about difficulties in getting waivers approved, Melissa said she would like more information about federal policies that are restrictive or cumbersome and encouraged folks to contact her with specifics.

She went on to say that CMS is trying to finish the next grant solicitation which is due out April 30. As part of the process, the agency has been consulting with a variety of folks. The Systems Change grants, Melissa said, have been getting “a lot of criticism” from Capitol Hill and other federal partners. The feedback is that while the fusion of money is nice, there’s nothing coming from the grants that can be replicated nationally. She said there is a general misunderstanding about what the grants are supposed to do. She said CMS is going to take a look at the information that’s being extracted from reports to see if it’s possible to help members of Congress and others understand what the grants are supposed to do.

Melissa added that CMS is also talking to folks about different ways to structure the grant in light of criticism the agency has received for giving too many grants for too little money. There are some who advocate for giving fewer grants for bigger amounts of money.

(I think this is talking about the solicitation) Melissa said CMS is going to try to talk more about what infrastructure means and focus on getting better information on the grants we have now.
She said CMS is also trying to overcome the challenge some states have of getting support from legislators and the governor’s office. “We are considering making it a requirement for the governor’s office to consolidate all state grant requests.”

Comments/Questions/Recommendations:

. The three years is going by too fast (grant period). (Melissa responded: We can make the grant period longer and intend to. Also, there is the issue of sustainability —within your own state and to get CMS support financially.)

. The essential ingredients (developed by the group the previous day) may be things you want to put in the solicitation as outcomes. You can be more prescriptive in a flexible way.

. If we were asked to quantify the three most significant outcomes we could—but we haven’t been asked to do that. (Suggestion: Grantees should be asked to go to Baltimore with three quantifiable outcomes.)

. The HCBS website could be enhanced. It’s very passive. It’s a lot of work. It is user-friend. It is searchable. But, you’ve got to know what you want. It’s worth investing in improving that information portal. Possibly add a discussion board.

. Websites are fabulous for people that are there using them; but nice pleasant, picturesque documents that highlight incredible achievements are very effective. Another investment would be a publication summarizing what these grants have meant to folks.

Melissa said grantees might see some changes as a result of some of the pressures CMS is feeling. She added that CMS has $2.9 million to do more direct service work and they’re thinking about how to structure that. One of the issues we have is the resources to manage all the grants and work. They’re looking at how to leverage some of that money to get more information of the evaluation of Ticket and DSW (??).

She said CMS is not going to do anymore solicitations for the DMI demonstration.

In general, CMS is settling down. There’s a lot of talk about Medicaid reform legislation.

CMS is looking for ways to bring grantee input to the solicitation. Again she mentioned wanting input on the prospect of consolidating the grant process in each state and other ways to ensure buy-in at the state level.

One participant suggested looking for ways to make stronger linkages between state Olmstead activities. “It would be great if you could give out some grants that can collaborate with other Real Choice grantees.”

Another suggested, “If you are going to outcomes, you need to do specific outcomes. You want specific outcomes for different areas like housing, etc.”

Group II: Character of Personal Empowerment- Leandre’s Notes

Day 1- A.M. Session

· Programs should be in service to the community, not just for people with impairments
· Where to begin discussion?
- Could say paper looks great, lots of good issues, but is that the case?

Rich: Paper has tone that those who work in the systems have the opportunity to empower people, and I disagree. System given to ppl who are marginalized in some way or another. Systems actually disempower people. People have power, the system doesn’t give it to them. Systems cannot empower people, empowerment comes from people knowing and believing their hopes, dreams and gifts. By knowing that and acting on it and having support to act on it, that is where empowerment comes from. Overall, I don’t believe that systems are empowering but I believe systems can mitigate disempowerment.

Lex: Would you say that without systems some people might not realize their empowerment?

Rich: Yes, we all need supports, but systems themselves cannot empower b/c they cannot tell you what your hopes and dreams are; only the person can do that. Systems and services were developed after we had devalued and marginalized people, then we created systems, to manage power and control, which is the opposite of empowerment. We have to play by the rules to get what we want, the systems are not about empowering, they are all about controlling. People are empowered b/c somehow they have been encouraged to look at their hopes and dreams and act upon them, not because of something the system did.

Patty: I agree that the system will not empower people, but the system can get out of the way to allow people to feel empowered.

Lex: When we promote empowerment, are we deemphasizing the system? So the person can express themselves in spite of the system?

Rich: You cannot totally de-systemize the system, however. Why do people end up on the outside anyway? That is important b/c it is those people that get put in the systems. The systems are supposed to rectify what we unconsciously did by marginalizing people. The only way people are empowered is when they are valued as people, not as part of systems. When people are marginal it is unconscious (at least for the most part…it is no longer politically correct to push people to the outskirts, we are now focused on including people), but we still push them aside and fail to realize what they offer. So if that is unconscious, but the creation of systems is conscious, how do we get out of that circle?

Dawn: I agree, but I think it could be different. Problem is that systems today do not begin with the voice of the consumer, it only ends with it. I think we can change that and make the system more about the voice of the consumer. If systems started with voice of consumer and allowed consumer to define what the services for them, and then allow it to end with the consumer determining whether the system achieved its goals, that would be empowering.

Michelle/Patty: In business what is different is that the customer has the money and therefore the power. In the system, the “customer” is not the one with the money, so the power and freedom is lost.

Lex: If you look at social services as money transfer btwn tax payers and beneficiary, then the question becomes what do the taxpayers req the bene to do to get the benefits? Systems work to choke people.

· Empowerment, and the definition of it:
· Lex: Hard to accept the idea that systems cannot achieve empowerment, schools can be used successfully to acquire skills and move towards affecting goals and hopes and dreams.
· Patty: System can be a tool, but doesn’t mean that a person exp empowerment. Any system doesn’t give you empowerment.
· Lex: People get empowerment different ways, some people get it from a school certificate, other people get it from an evangelist
· Patty: So it is very personal as to what empowers different people. How do we structure the tool? Need to determine who the customer is.
· Rich: Focus is how we mitigate disempowerment, and allow people to communicate with one another about their hopes and dreams.
· Lex: If we use tendency of people to want to be politically correct, then at some point it will take hold and we will rid ourselves of marginalization.
· Patrice: Business model--$$ is power. But if we look at private sector, I have needs and wants and I can purchase what I need and want b/c I have $$, in private sector there is so much competition. We do not have incentives and competition in the social service sector, and that is problematic.
· Beth: Example of creating system like C&C b/c state could not afford to employ people, so let people take charge of employment. Surveys showed that satisfaction went down and empowerment went up. This forced people to struggle on their own…that became empowerment. So empowerment may or may not be all that fabulous. People were doing more on their own but there was also a sense of desperation and alone-ness at the same time. Jumping off the cliff is good, but need to make sure you don’t hit the bottom.

Richard: Instead of that being the dark side empowerment, could it be your tool that was flawed?

Beth: Yes, and I actually think that what we did was abandon those people, rather than empower them. SO what IS empowerment—need definition? (LWJ) Trying to figure out what keeps going wrong. In Idaho, some people are very “difficult” (nature of population), so some people need to move to get services once they have exhausted the local providers. How do you recognize someone with a disability who does not fit in to the system.

Lex: Are we trying to create a system to empower some people who do not want to be empowered?

Patrice: But that may be empowered…to be able to make the choice to go through as many providers as I want.

Patty: In our general society what guidelines do we operate under that assure the health and safety of any of us? There are certain safeguards that exist that allow me to work my way through the system

Beth: Where is the line between the social contract of we will not harm one another vs. letting someone live with their choices
Patrice: So we let people live as they want assuming their own risk. I agree with Rich, but there are ways you can foster empowerment, but given our federal req’s I don’t think it is comparable

Rich: The fundamental question is: would you be willing to live the life of the person you (in your system) support? We create terms and systems that try to describe tools/approaches that close the gap between real life between you and me and the pretend life people who get connect with systems have. We keep creating mechanisms to make people’s lives look real.

Lex: Judge the system by whether you would like to live it?

Michelle: Some personal care asst. would say that they would love that life b/c the people they serve “have everything they need.”

Rich: We push people away and then we create systems to bring them back, but an artificial system cannot create a REAL life. I view my role to as much as possible, cause a “psychic rebirth” of people of citizens to welcome people with disabilities back in to the community.

Melissa: If we talk about marginalizing—it sounds like people who aren’t marginalized are doing something to people to marginalize them, but are you saying “psychic rebirthing” is one way to do the work is not to focus on the marginalized but on the people who are doing the marginalization? (yes) And, are there supports that could be avail in a combo that enlighten support providers, but also differ from traditional services in such a way that people are helped.

Dawn: What exactly is empowerment? (need to define)
. What anyone decides it is—the experience can be something different to each person
. Only way to know is to ask if people feel empowered?
. Control, having it. People differ between how much control they want
. How about influence and the ability to use influence to have things around you to be the way you need or want them to be
. Individual empowerment—does that require influence?
. Influence or control over some situation, but either way you need choice, right?
. If school is a system and there is only one way through, they may sense empowerment once they completed it, there was no choice, yet still a positive result
. I do not see control as an advantage, more “management” as important. Managing things works better than controlling things. I do not let the system control me; I try to manage it.
. Theme: choice?
. Is the absence of choice what results in disempowerment? Is it not gov’t’s function not to make people feel empowered, but rather to let people make choices?
. Choice is tool of empowerment, but empowerment is a belief field by the individual, b/c two awful choices do not result in empowerment
. Environment provides us with options, and then we choose, but we forget that sometimes the choice is no choice at all.
. Prefer not to think about “choice” and “empowerment” rather, positive, life affirming
. If we cannot agree on what we are talking about we will not be able to determine the barriers, b/c we won’t have common ground
. Are we caught on bundling together a service someone needs and desired with concept of assisting someone to become empowered based on a model that we have not created yet? Do they need to be bundled?
. We often adopt words based on looking back, so that they describe what is NOT. You make your path by walking. All the words are things that we know better by what they are not. We will never understand the word empowerment—it will just have deeper and deeper shades of meaning. We have adopted words that are symbols of real life.
. Empowerment is a word for us, not for the user. The user just wants their life
. In a sense it may be arrogant to talk about empowering when really the systems are in place that do not offer the quality of life that people would be satisfied with.
. If you choose something traditional, you will never be told you are empowered—you will just be labeled difficult.
. People still need the tools and options to decide what they do want, regardless of what that is
. One option is to provide people with the tools to “empower” them to make the choices in their life that they want…. eliminating the barrier of not giving people the tools. We can define that putting up barriers is bad. Whether giving them the tools actually empowers them is another issue. Idea: shift more to consultant basis. Need enough flexibility to have a) here are the options you decide and b) I do not want to do anything, you do it.
. Tools: $$, choice
. Most disempowering is lack of information
· Should we give people that information?
· Gov’t doesn’t give it b/c of who the people are who are receiving the systems. Especially problematic in rural areas. In OK, breaking the system down and giving it back to the consumer. Often times the consumer knows more than the gov’t. That can work, as long as the people (gov’t) who don’t know things know that they don’t know it. Often they pretend to want to give you the world, but when you need something you often cannot get it…in rural areas, it often comes down to $$
· Has information been a tool for empowerment?
· If there are tools to use, I will use it. Information is very necessary.

· What if we break the system down and the system just becomes the bank and the services just stay outside of it. Then the person who needs the services and get the money from the bank and then go buy what they need indepent of the system?
. All people may need services, but only people that can afford to provide them outside of the network can afford to get the services they want.
. In the idea of the system as a bank then can purchase from private or public, problem results when people burn out the system and there are no providers left, but another problem is what services can you actually get authorized? Especially if you are poor, your choices appear to change. In a capitalistic society, if you look like you can pay, you may find yourself in a worse place due to fundamental business pressures.
. What policy would you put into place in to implement the banking system in a way that works like a bank?
. After lunch – explore bank model and explore whether it works towards empowerment.

· Need to ID purpose of social service system?
. Means to an end, or the end

P.M. Session I
Key questions to consider for afternoon session…
· What themes most engaged the group?
. Paper or discussion?
· What issues were not well developed in the paper but were well developed in the discussion?
· Suggestions that may have occurred to us for future follow-up activities?

Additional points added to morning conversation:
· Concept of hopes, dreams and gifts… This is not about medical care, even though it is Medicaid. It is about people’s lives, not about reimbursement, forms, etc. More medical SW’s will not solve the problem, it is about the lives of the individuals and their families, friends, etc. (links)
· In what ways do we unconsciously marginalize people?

Paper:
Rich: Nothing particularly offensive, but also not earth shaking. So, the big question comes up, how do we actually DO this? The words make sense, the question is what do we do with them. Whatever empowerment is, and however we promote it is the tricky part. We have used “conscious”/”unconscious” a lot in the conversation and I think one of the big keys is consciousness and how to promote that in people. The is how we “peel the onion” of change.

RP: Seeking clarification—if we cannot empower have we failed to frame the discussion properly in the paper where we talk about 6 levels of empowerment? Instead might we have done better to talk about 6 levels of self-direction for services that people receive as opposed to empowerment?

Rich: The problem is that what we are talking about is not linear—so you cannot write a paper linearly. Systems linearity comes up short b/c we are talking about people’s lives. The paper makes sense if you are sitting in a system, but it ignores all the other forces that area acting on it.

Rich: The “levels” in the paper are too “system” focused.

Patrice: How many of us have we received the services we are talking about? We are doing exactly what we say we shouldn’t be.
Charles: We are doing what the system wants you to do?
Rich: I don’t feel bad about having the conversation, however, but we have to recognize the limitations.

Rich: How can a system which is set up to take control of people’s lives without asking those people…how can that same system “empower” people?

Dawn: We could be on a see-saw, you and I. I am more optimistic, I think it is the obligation to remove the barriers and be more “empowering.” I think the system should begin and end with the voice of the consumer. Consumers should be asked what do you need, and then develop the services, instead of the reverse.

Patty: I do not disagree, but want to reframe. Ultimately what we are about is that communities need to meet the needs, and the system needs to help people leverage the communities resources. System does not need to meet the needs, the community is where we should be looking. Really that is what people are looking for?

Dawn: people are being set up to fail if we tell people that the system will be meeting their needs.

Patty: We ask “what does a person need?” but we rarely ask in a really serious way, “what does this community/group/workplace” need in order to support that? That is why the sphere of action for me is goes beyond the linear system.

Beth: Need to contextualize the problem, the system can be the linkage not the answer and I like the community responding to the need, but I also think we need to remember that some people are actually comfortable with what they have and are utilizing it well. If this is a life that meets their hopes and dreams, etc. than we need to listen to that and learn from those people as well.

RP: Is there a distinction between different groups of people who receive services? I hear from people with physical disabilities, their interest in direction their services extends to being involved to the point that they get the services that they need and want and how they want them and they get enough. And their interest in linking or being linked is low.

Patty: I meant link as “where are the resources in the community that can be mobilized” as opposed to a “here is a service in a box.” Instead of choice meaning we need more “boxes”, we need more… (?)

Rich: The system can help promote by not ratcheting down service definition….that would be death.

Patty: With definitions that are only as clear as the purpose we get tons of flexibility and allow people to leverage supports.

Melissa: **Need to think about this conversation in terms of our federal partners. Because in order to give you $$, the Feds want to “count” what services you are providing, without service definitions, that is hard.. The Feds need to hear that flexibility is key. State experience needs to bubble up so Fed policies can adopt state needs versus the other way around.

Beth: Ethics codes have changed from prescriptive to aspiration-al. Every case needs to be weighed and judged to see if it works for the individual. It is more complicated—for creative people it can be freeing, for more compulsive types, it is hard not to be able to check a box. Creates problems for supervision, etc. It creates a problem, which can be fixed, but we have to be aware of what more flexibility will do. Shift from Rx to aspirational…look at what you want to achieve, so when you look at potential ethics violation, you can determine whether it is a violation b based on what the goals are versus what the rules are. Now “this is the way we think the world should operate…” take that into consideration.

Patty: That could be really useful for achieving “empowerment.”

Beth: Gives more “wiggle room”, but also asks for more accountability

RP: This would be an interesting conversation to have in terms of risk management.

Patrice: Door is narrowing for creativity within CMS.

Dawn: (constructed a drawing on flipchart). Each layer has its own set of responsibilities—
If we came up with a list of things that each level cannot do, would we get some clarity? Concern re: block granting of Medicaid. If we feel block granting would restrict empowerment we need to say that.
. If we think things are bad now, at least consider that it is “visible,” block granting will eliminate that.
. Also related to combining different populations—advocacy efforts around different populations will then be weakened, which may lead to less than positive outcomes.
. Left likes it because it deals with choices, etc. Right likes it because it deals with personal responsibility.

Melissa: Returning to Dawn’s drawing…
.State and federal systems are bigger pots of money that can provide to the upper levels…
.What are we forgetting?
. Where does advocacy fit in?
. Federal and state want continuity and predictability

Dawn: Maybe we should try to change the way we think about empowerment to be from the bottom of the drawing up….Feds empower state who empower communities who empower the people…that would get the decision making closer to the person. The way it works now, the feds are making the decisions for the little person who is so far away on the top of the drawing. Maybe that is why school systems work a little better b/c the decisions are closer to the people they serve? Block grants:
o With block grants would we have a higher possibility of going to the minimum req’d services rather than the maximum
o We need to look at the policies we think are enlightened very carefully and ask what we will think of it in 200 years (look at what we now think of the idea of Indian reservations). We miss the unintentional consequences so easily
· How do we get over seeing people as different to welcoming everyone into the community?

Rich: The best safety that exists is people that are caring, and trying to help—even if we disagree with each other, we are a force for integrity and commitment and doing the best we can. There is nothing we have talked about that isn’t worth working on, because we don’t know what the future will bring; it will all come to good.
Dawn: If block granting is conceptually good, but could also have very dire consequences for humans, we need to talk about what the challenges are. It will work well in some states but horribly in others.

Patty: How do we leverage and how do we create models that are really empowering?

Dawn: Is it possible for block grants to be good if there are prescriptive functions in place they could work?

Patty: individualized approaches are so cost prohibitive, we have to find ways to do it that aren’t so costly and staff heavy in order to make it work

Group II- Consumer Empowerment

Jan. 12- Weds a.m. session- Leandre’s Notes

RP: 2 different domains of empowerment?
. Little “e”: More with how grantees do their work
. The services are not empowerment, but they are a vehicle towards it
. Very important for leadership of programs
. Big “E”: supporting people as they make all kinds of decisions about their lives
. Explain this. Hopes from process: help grantees know better how to involve consumers

Beth: Stories about grants would be a good way to explain this. Offer to coordinate.

Patty: People struggle with what does this mean to me so the stories would be helpful

Dawn: Would like to see development of indicators of what empowerment looks like. This would be particularly useful for CMS. Indicators could drive an RFP process. “These are the kind of things that lead to empowerment in other
programs…and should be used to provide grants to new states”

RP: Intriguing that grants say “include consumers” but that is squishy

Melissa: Potential approach:
. 14 different ideas in paper—walk through each
. Add in element of each section as “indicator” what are the pros and cons
. Add and subtract from list
. Particularly from service provider perspective

Beth: we need to decide if it is a WHOLE list and decide what is missing

Patty: then we could do a preference matrix and see where the priorities are

Melissa: lets look at each, talk about key components, decide if they do or do not belong. In small groups, based on expertise, talk about how we flush it out, add to list

Patty: All the items see secondary to expanding access to support—they are how a system functions once choice already exists
o.Set empowerment as a goal and priority
. Change to “share empowerment as a goal and priority”
. Direct paper to all elements: indiv, family, community, community systems, state, federal?

RP: But then aren’t we being prescriptive about what families should do?

Beth: Empowerment as a goal and priority and that we function in that way and would look something like this

Patrice: We can look at each level, except for the individual and the family—we can give them the tools, but we cannot control what they do

· Process decision—break into groups, each take 4 points, discuss from all perspectives, with an interest in not being prescriptive.
o What are the questions?

RP: Federal, state and community systems are either broken or are in jeopardy of being broken, if what we are trying to do is state. Systems that allow indiv and families to play a different role in those systems, my expectation is that if the 3 systems work as they should, in fact, there is not a lot to be changed by the indiv and family other than their involvement. I am having a hard time prescribing what families have to do other than to show up and be present.

Beth: Hardest job is helping people reach out for what they want b/c they have been bashed down so long that they just do not reach out any more.

Patty: Biggest change as people take control is what happens with in the family

Dawn: For #1 : maybe something like “to have the opportunity to make a difference in your life.”

RP: Goal is to provide guidance for systems change grantees in places where systems are broken

FINAL
· Purpose: Foster those things in the systems that make empowerment possible for people
· Task: ID those things that promote “e” and those that are barriers to “e”.
·
Group 3 – this was a sub-breakout group. More detail about all groups is provided below.

#10 & 11Barriers: form rarely follows function, but it should. Form follows function at the individual and family level. Ex: business offices that are moving towards individual budgeting see how much info consumers need, but if we try to fit the system around the need, it doesn’t work. People using the $$ differently so we crate addendums to plans---we need personnel and role descriptions that are different than in the tradition system (agency policies).

· State—broader definitions that allow for custom design of roles, responsibilities and schedules and payment.
. Def. of quality management—satisfaction of the individual and its network OR “what they want, need and expect.” Authentic participation of consumer (how do we define authenticity). Quality systems that begin and end with the consumer.
. Add a new piece to the paper: Management of programs-increasing the power of consumers/community/service recipients boards in the direction of services
. Requires significant orientation of the consumers and allow for authentic participation, valuing participation from everyone
. Indep review process at state level that looks at how authentic the consumer involvement is
· Federal—expectations that the data will reflect degree to which people were able to self-direct.
. Looking at data that determined whether it would be individually designed as opposed to how to the person spent the $$. Look at cost benefit around an individual.
· Community—information for informed choice.

#12 & 13: “Make efforts” is the most any one can do. Create a culture that supports risk taking.

* Medicaid office --- identify process of mediation or conflict resolution. Provide a mechanism that allows for risk taking. Identify the true picture of accountability for agencies – provide information. Examples of where it has been done-Sabatino document
· Define what manipulation is and what the ramifications of attempting it are.
· Indicator—id or create a clear and objective/transparent process for assessing risk and accountability. Have a process of mitigation….know what to do to fix it.

#13 User friendly comprehensive information—not necessarily derived form the system. “In addition to…” A person should not have to pay to learn how to do this. Allow for peer partnerships.
Policy: In aspiring to these principles if we really to commit to figuring out what the alternative is, we need to commit the resources to finding an alternative

#14 Support the way we work cooperatively together - would an RFP promote this?

Jan. 12- Weds p.m. session- Leandre’s notes

Melissa: Grantees always looking for application ideas—things that are tangible. Next steps: move towards additional creativity. Want to mix detail with the theories that may have been missed in the paper.

Michael K:
For this afternoon—
1) Obstacles and investments
2) Changes from yesterday
3) Suggestions for future actions

RP: What we can’t do is have the creativity of this group after we leave, so whatever we can do to focus on the key sentinel points is perhaps the best investment.

Paper #1-4
· Barrier: not knowing how to document the complex system that is consumer development. Federal gov has to tell Congress how they spent the $$, but that is not easily placed into check boxes. It is difficult to document complex systems in a uniform way.
· Barrier: There is a dearth of consumer involvement in research. Suggest that consumers be the impetus (drivers) of policy research and evaluation. Consumer dominated operations are necessary. Instead of having “expert” develop and consumer “bless” the research, have it start with the consumer.
. Investment: Policy and research initiatives should be driven by the consumer (co0nsumer s involved in the design from the start)
· Investment: Bottom line should be consumer outcomes, not fiscal, not other things.
· I: corporate culture of customer satisfaction (provider and end-user are 2 different customers)
· I: Reimbursement systems that allow for sustainability
· I: Federal role: set minimal expectations related to empowerment – more flexibility to states w/ a federal safety nest Support corporate culture of customer satisfaction
· Barrier: basic health, safety, welfare and risk issues
· I: Identify a transparent and objective process—perhaps consumer review process to present risk assurances from being a barrier.
· I: Consider new mechanisms to share risk that aren’t based on finances
· B: continued liability
· Barrier: state should have reimbursement rates that allow for sustainable systems
· I: End funding to ICF-MR’s
· I: Consolidate service definitions = life support activities (removes admin category restriction s and increase flexibility).
· Investment: Create policies and procedures to reduce opportunities for adverse errors
. Acknowledging the value of community members to assume some responsibility for check and balances
. Analyze the causes of errors or risks and implement system improvements that reduce them (ex: airline industry) Create a culture of safety.

Paper 5-9

· Barrier: Lack of consumer empowerment requirements that apply to the federal level.
. Must be a decision making body
. Perhaps at least 51%
. Removing “advisory”
· Investment: employ consumer consultants (relates to consumer voice, involvement)
. Include honorarium, travel reimbursements, etc.
· I: Increased accountability (add teeth!) for programs that are supposed to espouse empowerment
· I: Policy loop that includes the end-user (consumer)
· I: Staff competencies of “e” principles
· B: Discrimination
· I: More people with disabilities in the competitive workforce
· I: continued external advocacy to support problem solving (future: how?) available at all levels of the system (person, community, state, federal). Empowerment charters.
· B: Fear of repercussions for speaking up to advocate for consumers (for families, community service providers, state workers, etc.)
· I: Promote mechanisms to support learning cultures and ways to see that that is done

Paper 10-14
· Investment: work to create useful information, such as options, strategies for navigating systems, orienting to boards. Equalization of knowledge

. Barrier = non-user friendly information
· Investment: Indep bodies to create and review information that free of interest conflicts
· Investment: Allow for broader definitions to allow form to follow function…gov’t regulations that are flexible and not dependant on a pre-set menu

Summary:
· Develop measurement tools that reflect the empowerment paradigm
· Funding system should match hopes and dreams and goals. Resource allocation should be made on a deficiency measure of what is wrong with you.
o.Should Medicaid then be open to anyone who wants to have hopes and dreams and goals fulfilled?
. No, still have eligibility based on need but more focused on hopes, dreams and needs

Day 1 Group II Consumer Empowerment- Marisa’s notes

Lex began our discussion by talking about the impact of systems and their empowerment. That by acting out who you are with or without support, systems can or cannot empower people. Rich Crocker did not agree, they felt that the systems could dis-empower people or impede on their lives more so than they can empower.

Patty Cotton- agrees that personal empowerment ensues that the system needs to be able to step aside and allow the individual, to de-systemize at that level.

Rich Crocker- Marginalization- the people who are marginalized are the ones who end up getting the help. People are unconsciously marginalized.

Disability Paradigm- the only way to transcend this is to discuss with the person what their hopes and dreams are. If systems become facilitators and the citizens do the empowering with each other.

Competition within the private sector can also drive that empowerment. Leads to direction change in conversation regarding privatized model. Consumer satisfaction went down, empowerment went up. Forcing people to struggle on their own, in a way invokes empowerment- two sides to the system-perhaps sometimes driven through a sense of desperation. Return again to issue of empowerment and also its use as a measurement tool. The So-called “dark side” of empowerment (abandonment). Money and resources – common occurrence is the disempowerment of the staff and system by the consumer or individual they are trying to help. Encouraging consumers to act on their own behalf can lead to disempowerment on the other side- the systemic level.

Issue of working around a disability and the characterization- in terms of brain injuries- because others cannot tell that the person is disabled. Because he/she does or may not receive Medicaid- they are constantly. With privatization there is nobody required to serve that person. Issue of if someone is difficult- no one is willing to work with them.

Taxpayers setting requirement for benefits those recipients receive?

Closing the gap that beneficiaries are subject to eligibility has a profound effect on their ability to experience the simple things in life that we take for granted. We keep creating mechanisms (systems) where they evolve to what the individual needs, on a day to day basis. Way to measure the system on how you would be subject?

Rich Crocker views his role in as many diff ways to support people better. Empowerment lies within the community. Marginalize

Uniform definition of empowerment-(rhetorical question)-

Sometimes there are no choices- use of the word choices when appropriate whereas on many occasions there really are no choices. “Positive Participation”- Life affirming direction- we must find a common ground- meaningful.

Richard points out- are we caught bundling together a service that someone needs with the whole concept of empowerment? And do those necessarily need to be bundled together. As we adopt these words for tools of the future, defining what it’s not, we adopt words that signal what something is not in a way. It doesn’t mean we’ve figured out what they mean. These words change or evolve in meaning over the course of time. It is quite common for people to not understand the word empowerment- we may never understand it.

Rich Crocker- when we bring in these symbols from a systems change point of view- what you know about or of empowerment is by experience only. The paradox is that systems want to place rationality to these terms; in the use of words that people use in their daily lives, they demand meaning to the term empowerment. Then it only becomes useful to come up with words that designate what empowerment is not, thereby defining it in a more general sense? Or does the use of symbolism and words to determine what empowerment is not- only give rise to more questions of what it is or cause even more confusion. To define something by describing what it is NOT.

Patty Cotton- what is the range of tools or options that these people need to identify in order to get what they need in their lives. A dynamic that has occurred in the last 50 or 60 years, when you look at the pace of change, it has significantly grown faster. We are very appreciative for what HAS improved in many ways or even in a small way, we are grateful for some improvement.

Ingredients for what demonstrates change in the right direction rather than define empowerment. Set aside empowerment for a second.

Patty Cotton- it’s important that those in service providing consult to the consumer believe in what they are doing. They need to eliminate the barrier of NOT giving people the tools they need. Providing tools is a good thing whether or not they empower the individual. Shift to more of a consultant behavior

Access to information- consultant should uphold the interests of the individual. And be at least knowledgeable of the info that is available for that person. How to access the information is a constant issue of concern both at the consumer level and systemic for those who need to provide the info or need to be familiar with it.

Not being able to describe for consumers what they are paying for and an idea of how much it will cost, and over what amount of time the goal can be reached by. Holding the govt accountable for these issues is unclear why we do not. Example that Lex used would be individuals applying for Medicaid who don’t know why they are applying for it and it is not clear to them what forms or supplements they will receive.

Gov should indicate more clearly what it is that you are receiving in terms of benefits and what taxpayers are paying for.

Break down the system- system becomes the bank with svcs remaining outside the system- so that people who are eligible (social svc systems) can access $ and get what they need in terms of paying for svcs they need. Aging people face a challenge of being able to access the same services. Where do care systems of providers merge in those cases?

Ex: Idaho- (non-profit/for-profit) has a type of syst similar to the one described by Lex. Where does $$ come from? Govt/Insurance? ** This does not equalize the treatment of people- leaves out factor of poverty (since it is not an issue of disability).

Rich Crocker- Nixon sponsored negative income tax (earned income credit). Feels that if you go to the banking model it should be similar type of system. Social service syst balance the free community discrepancy.

2nd session- summarizations/points we came to
Opening review remarks and questions/points we came to before lunch:

· Can the “system” empower people?
· Or does the system jest get out of the way so people can empower themselves?
· Unconscious marginalization- idea of this is about people’s lives not just healthcare (Beth Stamm)
· What is empowerment?
1. It is entirely personal
2. it IS power
3. it is influence
4. it is control
5. it is choice
6. it is not barriers
· If we had a choice we be having this conversation? Decision vs choice
· Can we/should we separate funding from “the bank” from service provision to increase empowerment?
· It’s about a whole life, hopes, dreams, gifts and their links (family, friends,etc)

Rich Crocker- from his point of view, the components of empowerment are not well defined (in the paper nor by us)

If we can empower have we failed to frame the discussion in the paper as far as levels of empowerment or self-direction? If you remove empowerment from the equation what is left is at the level of control over what they are getting.

“Linear” description of systems to aid- non-linear issue- Rich argues that decisions on life are non-linear issues?

Why is change promoted—is it change in people’s lives?
Personal care systems that failed- why these systems of personal care, examining their failures to see where and why they failed to meet consumer needs in order to develop a better system.

Day 2- Group II Consumer Empowerment- Marisa’s Notes

Richard- First question- Are we dealing with two entirely diff domains of empowerment in our discussions and maybe we haven’t all understood or come to the same understanding of that? By that I mean that there is empowerment in the big sense and then in the small sense. In the context of real choice grants it might have more to do with how grantees do their work, in a way that fosters involvement of people and choices

Dawn- The biggie has to do with supporting people as they make all kinds of decisions about their lives, I thought we should bring that to the table and explore it a little bit. Maybe there is a 3rd piece but we won’t go there right now.
One of the things we were hoping for is to help grantees in the initiative know how to better involve consumers in the process of receiving svcs and directing in the process of receiving svcs in all others.

Patty- it’s about different domains, in the realm of what can be done. We need to be clear about the term empowerment, in other words not a vehicle for people to.

Richard- in some level it comes to leadership of programs

Beth-back to prescriptives-

Patty- it is great in the way to conceptualize what it means and providing a theme; it’s hard to provide a conceptual model that’s not individual examples.

Beth- I think stories are a good way to provide to legislators or implementers that way they’re not just “dreamer-uppers”.

· Theme idea- using the big “e” or the little “e” in the paper

Dawn- I think it would be a great idea to develop indicators that might be the RFP process in terms of being able to be more definitive. Kind of give CMS indicators so as funding for a grant goes through they might be clear about the parameters that are established. So if they can agree on indicators that would drive the RFP process. Based on this, these are common themes in all projects so they become common indicators.

Patty- you might be able to get down those dramatic areas,
Throwing the language out there, throwing buzzwords in a proposal.

Melissa- potential approach- in the paper itself there are 14 diff. ideas about ways that people could be empowered through those services. If we wanted to we might want to try and add an element, or some way that we would frame this issue, how might these ideas shake out as indicators, maybe take some off or add some to the list. Spend our day figuring out are there additional pieces.

Patty- it would be interesting to take the diagram (from yesterday) and put those indicators on it to show how they are all interrelated.
Melissa- We had some good points yesterday- if we’re talking about indicators maybe we start with one category- from a community perspective, or state’s perspective, there are levels of differentiation that we could focus on.

Beth- we need to decide if it’s a whole list, we need to think about what’s missing if anything.
Patty- we could do that and prioritization – ex. Where the group is most interested in areas, etc.

Melissa- if we go thru the list in a general way, for the purpose of eliminating any that aren’t clear or need to come off and then break into small groups and hash out what needs to be added, etc. So there’s 14 indicators on p.7, go thru and make sure that nobody has a question of what the key component is and if anyone has any question about it or if they don’t feel it belongs.

Patty- there seems to be a glaring lack of anything related to that ability to access and expand options and resources for support. It just seems that to way to add until after might mean we spend a lot of time on something that’s less important.
Lex- I don’t feel we should wait until the end of our session to add.

Dawn- Should policy makers be the ones drawing the line, the implementation, they finally figured out there is not enough direction, there is a presumption that all people can be empowered, not necessarily self-direct. Statement- That ALL people can be empowered.

Patty- on an individual basis there is that assumption that all people can self direct. There’s a lot folks that don’ want to worry about those decisions. It’s not just about the person but it’s about the family, etc. of that person- we have to coach that and come to an understanding around WHO the person is.

Dawn- when you get to the “fear for safety” thing especially for mothers, I think society tends to see it more often as a disability error,
Patty- It’s very much a family culture issue- whereas it could mean a generational issue of one person making decisions, etc. I don’t think that’s a systems role at all.

Following the issues starting on p.7- for discussion
Beth- change it to share empowerment instead of set empowerment. Change the language a bit so that it reads more as a collaborative.

Patrice- setting goals for each one would be better.
Beth- if we go that route the paper is directed toward everyone.
Leandre- it might be a more inclusive paper to broaden the scope.
Richard- if we’re including family also, there might be a little bit of anxiety there, and what they should do.
Dawn/Patrice- empowerment as a goal should be at the federal level.

Patty- it would be like informed decisions and level of control.
Beth- in terms of aspirational vs. prescriptive you could do empowerment and how it would function that way.
Patty- it could be very purposeful; in order to make it not prescriptive but to include what an agency or state could be doing in terms of outreach in relation to that.
Patrice- we can look at it, pushing it up from the bottom up, we can provide those tools or foster the environment where that happens.

Patty- it would be around very comprehensive user info, in terms of not just being about the type of info that people have so they can.

(Later broke into 3 groups & divided up indicators – see below)

Richard – the federal, state and community systems are in jeopardy of being broken and if we’re trying to allow family involvement- I’m having trouble prescribing what families have to do in this whole equation, if they want to have a role, then have a role. Within the context of supporting the individual and families,

Beth- we often work with people and try to help them reach out for what they want.

Richard- so what we’re thinking about is a list of what their potential role may be. Beth- the people who are the most labor intensive are those that tried so often that they have no hope left and are afraid to reach for those dreams again. The ability to reach out for something and not be smacked back down.

Patty- to me probably the biggest change occurs with the individual and the family in terms of self-control, there is a tremendous weight, whereas the perspective of what needs to be available in the individual and the family is not clear.

Dawn- providing the opportunity means there are options that the person can engage in. The issue is do they have the opportunity to be part of the process? Do they even have the opportunity to have a voice?

Beth- it’s the person has a choice to be what they want to be.

Richard- Where I’m most comfortable is talking about in terms of availability of options- being able to talk about options for involvement. For those of us at ILRU, we are trying to have aim to grantees is to try to offer guidance on exactly what’s wrong. The distance between what could be and what actually is. I want to share that but I also don’t want to push the group because I am having anxiety.

Lex- can’t we reconcile by saying that our job is to identify the dynamics that foster or create the foundation for empowerment. In other words we want to examine the system to get rid of the disempowering aspects and promote the empowering aspects. We want to foster the conditions in the system that promote empowerment.

Statement of purpose: Foster those things in systems that make empowerment possible for people. It could be a checklist of states-
· Task: Identify those things that promote the little “e” and are barriers to “e”.
· Discuss in terms of- Individual potential & options & Family, then Community/Community systems, then State/ Federal

Group 1 (1-4)
Process- Took the task and looked for things that promoted empowerment and were barriers to it, and then looked at 1-4 and came up with either a barrier or promoter and then tested out against all 3 systems (Individual/Family, Community/Community systems/,etc.). Things that we knew were a problem, things that were getting in the way of the various systems in our experiences. We put it where we thought it belonged.

Group 2 (5-9)
Process- used a similar process except for what we came up with in looking at barriers and promoters. They were pretty broad; there was some overlapping and many that applied all the way across. We found one that extends all the way into family, the fact that complaints are discouraged in some points in the system and the fact that people are afraid of retribution within the system.

Group 3 (10-14)
Process- Removed 10-14 and reworked them- replaced them and identified the key things they came up with, looked for broader system definitions that allow for flexibility. Quality management includes all levels so everyone is satisfied with service- includes community and CMS.

Group 1- 1-4 Key Themes: Investments and Barriers
· No knowing how to document complex system that exist as a result of consumer empowerment. How do we document this complex system? Because the path for one person is so individual- CMS has to tell somebody how they spent $$, how will they organize and document where he $$ went? Consumer empowerment leads to a complex system and it’s difficult to document complex systems in a uniform way. People are willing to do it but it’s very hard.

· Barrier-Consumer dominated operations- having consumers involved in the evaluative process rather than just social workers from CMS,etc. Rich- right now CMS uses a great deal of research and input at the University level, we are suggesting they use consumers- have more consumers participate in the policy and evaluation. It should be DOMINATED/DRIVEN by consumers, not just involvement. These technical experts at the university level should receive more info from the consumer.

· The endpoint of the system should be for the consumer- focused on the consumer outcome, so the number of dollars becomes one factor that you look at in consumer outcomes. Endpoint should be consumer outcome, not fiscal or some other.
· Corporate culture of customer satisfaction- two groups of customers- one is provider and the other is consumer.
· Documentation throughout the system that aligns practice with policy.
· Barrier- The federal guidance in general should empower the states more—reimbursement systems that allow for sustainability
· Federal role: set minimal expectations related to empowerment- more flexibility to states w/a federal safety net. Have states make some basic assurances about what must be done that allows for flexibility. These are things that would need to be articulated- CAUTION ABOUT BLOCK GRANTING ISSUES HERE. **Crossover with Risk Management issues here- back to welfare of participant that states are charged with, states pass that on to the community system, when individual makes a choice for their health and welfare- the state is making them responsible thus the community does not want to allow the individual assume the risk of their own safety&health- this places an assurance in there that does not allow that to happen thereby DISEmpowering the individual.
· Barrier- Basic safety, health, welfare and Risk management issues
· Identifying a clear process and objective- and also an independent review type of process that brings a way of examining issues why. How to determine “informed”?
· Barrier- currently no appeals process that allows a consumer to challenge
· Consider new mechanisms to share risk- back to the private sector and the balance of risk as opposed to those who are non-profit and those for-profit. Negotiation of risk is shared and ultimately when it comes to litigation – risk is assumed? In this market we do not have that- we don’t want someone looking at profit as determining risk.
· Barrier- continued liability
· Shut off funding for ICF-MR
· Consolidate services across life domains based on hour support- one service definition- LIFE support activities and those are determined based on the individual. This increases flexibility, aligns the funding in the service category with empowering people to make choices about their life. Removes admin/category restrictions.
· Create something in the system to prevent adverse effects and medical errors- Investment to spend additional state funds to reduce these technology related issues or pay home health workers more in efforts to reduce those related issues. (Mortality Analysis???) Create processes to reduce or limit, includes family involvement in order to help. Richard- analyze the causes of errors or risk and create system improvements that reduce or eliminate; creating a CULTURE OF SAFETY- whereas people as a group record those errors, and the info is shared in that manner.

Group 2- Investments and Barriers
· Barrier- with respect to tokenism- the federal govt should be held to the same standard of consumer empowerment. One thing absent would be consumer task forces for CNS for example, there should be a community provider because every level has its own set and consumer voices are absent from most of those levels. This leads to consumers receiving svcs they don’t need. – Consumer Task Forces recommended to CMS- at the highest level with the greatest amount of dollars. Leandre-CMS maybe very open to these suggestions but they are looking for guidance on what those things actually are.
· If it wasn’t a decision making body- simply listening to what consumers bring to the table wasn’t good enough. Need to make them equal partners, let them be vested with decision-making, on all-important levels.
· At the community level make sure process is driven by consumer outcomes or satisfaction, once the needs of the consumer are identified. The needs of the consumer need to be included in the design itself. If we are designing programs we need to talk to consumers first then decide on the programs. Willing to concede that it folds in to 2nd investment point? Having a role in the decision making process, not just being at the table.
· Employing consumer consultants for design and evaluation, making it a purposeful intent to employ consumers in policy making, capturing the voice and needs of the consumer, this should be part of the design process in terms of evaluating the support services and getting those in place. This is also relevant to the consumer task force. This removes the barrier and equalizes these people, sort of not making them so-called 2nd rate citizens, etc.
· Barrier- accountability at the practice level just isn’t there. Monitoring of consumer empowerment, specifically if it’s going to be an indicator- grants for example that do not have a consumer advisory task force that loose their funding. Repercussions set in place, something with Teeth (Melissa Wittman) where if they don’t do this, they will face some sort of repercussion.
· The federal govt as they create policy gets passed on thru he state to the community, that the assessment at the community level- the information flows from the fact and some way to communicate back to the fed govt that there exists a policy problem. Ex- consumer, community and state that includes the end user and how would that work. Sort of a “loop” for this to establish a flow of information.
· staff demonstration of knowledge of definition of consumer empowerment
· Increasing number of people with disabilities employed, more money to workforces with disabilities, the more specific we can be- the competitive workforce.
· External advocacy is sometimes affected in terms of being able to solve a problem- CMS having obligation to oversee some groups? Or groups that include consumers as well, advocacy groups. Commonality in what you are doing is criteria or could be criteria for aligning with external advocacy groups. In some ways this could possibly be a barrier if goal(s) not shared. By design, task force needs to include those whose values are aligned. Organizations that are critical being part of the decision making team. Sometimes this is necessary in terms of the government. Beth- use of “charters” to be held accountable to that or as a tool to keep groups from wandering away from their actual goals set fourth to begin with. Having a group that addresses specific things. In the context- family members and individuals w/disabilities become more apparent in the community.
· Barrier-Individuals who cannot voice their concerns or fear to speak up about services they need or are not receiving. Staff is also involved and their choice to advocate something that doesn’t necessarily fall within the scope of some objective, they are afraid and fear repercussion. So it’s a every level, not just for the individual. Every level could from the end-user to the president, whoever needs to respect the little “e”.

Richard-Feedback concept that may help explain is that of learning organizations. Orgs that structure themselves and operate in a way that they are always gathering info about what works/doesn’t and then constantly changing what they do. Suggestion to put the term LEARNING ORGANIZATION in the mix. Is that an investment in learning organizations or promoting organization philosophy; perhaps a culture of safety. It is about outcomes and changing the way they do something-continuous quality improvement? Beth QAQI-is critical but needs to occur in a way that doesn’t try to deal with a problem so quickly. We’ve learned that change is not always good the learning is the point there, understanding what you are doing and that relates to QAQI. Patty- is there evidence that it’s incorporated into practice? That they are learning?

· Promoting mechanisms to support learning cultures and accountability/implementation measures to ensure it’s done. (possible future.

Group 3- Investments and Barriers
· Equalization of knowledge- Prep work to ensure meaningful participation in advisory/decision making bodies
· Barrier: it’s not user friendly and there isn’t any of it- info. How to navigate and leverage services/supports
· Govt regulations that are flexible and responsive, not a preset menu of things but something open-slate where they put what is on there, they don’t have to choose from what is available. Aspirational vs prescriptive. Goal based, and not prescriptive based. Documentation of what consumers really need and what has impacted their life. Leandre- in terms of looking at data; focus on how $ got to be spent as opposed to how it was utilized, a whole focus change. Melissa- a series of items maybe on a checklist where you go through the process with an individual as an example.
· Process criteria/customized services and individualized budgets. Beth/Patty- in terms of data collection the process criteria becomes the data. Patrice- that’s part of the continuous quality improvement aim also. Dawn- add as a third process for criteria the consumer? Or is it a given? Ensure that the consumer is actually included in the process. Leandre- this sounds like we just sort of add the piece on and we actually want to change the Fed expectation? Patrice- what do they look at right now to ensure that goals are met? Beth- when we come up with these criteria how do we know what process is a better system? If we don’t know how the lives of however many individuals unfold? We should make an investment to figure this out. Richard/Patty/Beth- that needs to be done. **Process Criteria**
· Expectations and Investment in- change process

Summary discussions:

The complexity in issue of accountability- in terms of empowerment, choice and outcomes, there’s no clarity in terms of an outcome. (Taken from a combination of statements).

Dawn- it’s overly complex so the investment needs to be made because the existing mechanisms are too complex. Beth- people don’t think in terms of measurement. Rich- needs to develop measurement tools that reflect the empowerment paradigm. Variation on this from state to state but there is a need to change the from the deficiency focus (sort of CMS backbone system funding) to a life goals focus, sort of hopes and dreams. The resources should not be made on the basis of a deficiency focus of what is wrong with you. Because the empowerment paradigm is about focusing on people’s life’s goals; the funding is based on what’s wrong with you, So every year you have to say what’s wrong with somebody to keep the $$ going. Beth asked the question of eligibility determinations based on what? Patrice- lack of information issue added to our list of barriers. We need to know what the Feds need to report to congress, that way we are giving the correct information. -Issue of inadequate info to share with Congress. Feds work with projects and states to determine what info needs to go to Congress.

Today’s Reporting session- Key Points:
· Federal consumer task force
· Reporting Dialogue (multi-faceted)
· Begin & end w/ consumer voice- from beginning to end
· Flexibility- life support activity

Next steps:
· More dialogue to clarify issues raised
· Create opportunities to pilot some of these ideas
· Send feedback in the form of a letter to CMS on our groups findings and solicit their input to the projects as well. Feedback/Response.

Group 2
#5-Symbolic Gestures: example Creation of dysfunctional/non-functional task force-
Token CNS Representatives
Process:

#5-Community State Federal
. Promote-assure end user, input in each step of program design integration process.
. Promote-Employment of consultants who utilize services.
CNS satisfaction -See diagram in A Maintain Accountability and asset monitor
. Token board no decision making authority/voice Barrier-No CNS Advisory groupEnlightening having process for Regs. token

#6-Community State Federal
. Foster-Develop competencies & establish standards for hiring
.Foster- Increase # Individual employed w/ Disabilities
. Barrier-Discrimination

#7 Community State Federal
. Foster- Info, Train-Apply comp to existing staff
. Barrier- Existing values/principles don’t support

#8 Community State Federal
-Include external Advocates in task force applies to #5 Mutually brought from opportunities Promote- Involvement of hose external groups that are consistent w/mission of program.
Constraints provide agency owner** Applies to--- Constraints on advocacy by state employeesIndividual & Family
Barrier - Constraints on advocacy by Fed Employees

#9 Community State Federal
Promote-
Group III- Enablement (day 1)- Mark’s Notes

*Slanted warning- cautionary- Deal with the cards you are dealt, not the cars you wish you were dealt.

Bob Mollica- community verbage confusing. State roles?
Strong leadership most important.

Joe Entwistle- - make constellation into spider web. Each state is so different.
Ernest- states role in creating an environment to change- does leadership have to be in a certain place?
Sue- CMS to encourage groups to put out. Where do you need a law or policy or court action to force change?
Sally- There is always the threat (of court action) to make things happen instead of a proactive group.
Ernest- What are the catalysts to elicit change?
Jennifer- leadership-- good leadership, barrier elimination study (Penney/Pennsy?1) 37 barriers. How administration took silos away, took 37 barriers and worked in them.
Joe E.- Small successes are important. Motivating.
Ernest- What do we expect from leadership if it is to make change happen?
Jennifer- Communication and structure- change happens at lower level. If those from lower levels aren’t on board, it’s hard if not impossible to enforce. Policy vs. enforcement. Two kinds of authority (?) needed in order to motivate change in system
Lee- worked in some states, not others, why?
Janet- It often falls down to individual people, so how do you get each one to do it? Entrenched Democracy. Give the audience a feeling they can do this. Should have been policy paper vs. scholastic paper. Instead pick specific issues that we all agree could be changed in all states.
Bob- Agree with critical ingredients, but you must be state specific.
Sue- Leadership happens at multiple levels, you can’t rely on just one.
Edie: Who would be the right people who talk to each other
Sue: People within state government, local government, family advocates. Mechanisms: Real choice Community ling. Task forces.
Sally- Mid government?
Sue: The Mid? Uses were concrete with helped get it passed.
Sally: Cost effectiveness is very important. Must capture funding and quality life element.
Jane: Things seem so desperate—hard to get the agencies…
Darrell: Synopsis.
Edie: Guidance to set up changes
Joe: Find people, find goal and throw spotlight on that person; in other words create advocates/leaders.
Sue: Create a group.
Edie: People-- who have a history together, established rapport.
Bob: Will leadership and agency give auth?
Sue: outside agitation
Bob: glad (only) advocates kill bill that was passed because they were not included.
Joe: Be a middleman. Give info to, use advocates.
Ernest: Ask for grant
Janet: Leadership with clarity and articulate goals, realistic goals.
Edie: What are the elements necessary? Further (?) needs to know applicant knows what pieces are in place. Applicant (?) needs to know what needs to be in place and what are the states they can take.
Sue: Back to Darrell’s synopsis-
· Leadership at multiple levels
· Shared vision- what is in it for all?
· Medicaid Buy-in
· Get multi-divided communities together; elderly, disabled, etc. issues are same: home care, etc.
Jennifer: Her state is now accountable.
Sally: Funding have certain parameters. What do you think elements need to be at the table?
Joe: What is the sustainability after they give the grant
· How is the money to be used that’s important
· Last longer when money runs out

Bob: Two states have universities that manage grants. How is it affected?
Sally: University provides staff that state can’t hire--Extension of work force.
Sue: University has different levels and credibility; better ability to deal with advocates that state workers don’t.
Janet: in groups it’s always important to have great communication who can entail info well to motivate people.
Edie: can’t prescribe guidelines: must have university, must have…etc.
Janet: Outcome of this meeting suggested: 6 points and 6 papers on each point (like leadership—at every bend perhaps).
Joe: Systems change is like tragedy- everyone deals with it differently.
Janet: True. “Systems Change”, stop using it in isolation but w/ something like a goal. “make a systems change to help your…”
Edie: How can you actualize leadership from different ends?
Sue: Worked because they didn’t come to the table with a particular agenda.
Joe: Nice venue helps.
Edie: Team communication and here is how you do it.
Janet: Importance and networking.
Sue: How do you find and sustain work? If you invest 10% in building social network is much more fruitful than pulling that 10% in another part of the problem.
Darrell:
1. What are the issues resonated most in the group?
2. What themes in the paper were developed well enough?
3. Any future suggestions to follow-up?

Ernest: indication…common good?
Janet: Align social and self-interests together
Edie: Connecting with people w/ shared values and goals before bringing pet projects, etc. – let specific projects evolve from this. What’s working and what is not? Collaboration- what kind of people together- collaboration, agenda.
Sally: what’s the process to make it work?
Janet:
· Use professional facilitator for objectivity.
· Utilization of convenience and right people at the table are one in the same point.
· Have an agreement at the start to use certain values
· Get them on board to refer back to

Jennifer: Get a lot of work done between large meetings with smaller groups
Janet: There should be a continuity of knowledge in the groups. Some kind of structure for people to get on the wagon fast – give people a chance not to be burned out.
Jennifer: Or tap into existing groups and informal network.
Janet: Formalize a group from state organizations to discuss cases of people who want to transition out. Organizing with existing source.
Sue: Pronouncement of their values to support the direction.
Ernest: Government must give indication of cooperation/interest for lower agencies to have confidence they will be considered.

Succession planning for sustainability:
1. Leadership at all levels and partnerships
· Good communication brings structure
· Leadership in all levels in communication
· Key element is mentoring stakeholders
2. Inclusion:
· Ensure the people who get the service give their desires and what they need.
· Anybody who is impacted needs to be at the table from the beginning.
3. Base and knowledge for all in group
4. Sustainability of systems change
5. Funding
· What types of funding?
· Shift in funding and shift in culture or how and who in regards to sustainability

Edie: Types of activities to make issues sustainable:
· Changing funding stream- Medicaid not implementing what they’re paid for
· Quality Assurance
· Regulation
· Mindset & perspectives, people with inst. Memory to hold on those follow periods
· Establishing network of colleagues on all levels
· Changes in government structure

Day 2 Enablement: Cross State Network- Mark’s Notes
What constitutes positive state enablement of change that produces eventual consumer benefit?
Edie: There are some things the state can do to facilitate the program.
Sue: What is the audience? State agency people? Policy makers?
Darrell: should be geared to grantees (state agencies).
Joe: How do you get the states to innovate systems change?
Sue: To enable com change states processors must:
Ernest: State agrees to actually support the systems change.
Bob: State is a broad support.
Sally: Pearls of wisdom fall into different sections.
Janet: How do you work with your state advocacy (like ADAPT) how does the state deal with advocates?
Jennifer: Get state agency upstart to deal with their changes.
Sally: That’s changing the culture.
Ernest: State employees have hands on role w/changes.
Sally: States are “Gate Keepers”.
Jennifer: Complaints need to be solution based…culture change…educational change…
Bob: What is the states’ vision and policy direction?
Sue: We are assuming this is a state agency who wants to create change. How do we do it?
Ernest: Ensure the change includes all parties.
Sally: recipients, advocates & legislatures as partners.
Sue: We are giving a blueprint for change and these are the things you need: leadership, vision, etc.
Edie: The focus has to be very direct in supporting change.
Sally (to Kathy): The state does not do well in monitoring consumers. There seems to be no way for states to slap the hand (much for holding providers accountable).
Ernest: Sustainability. The state needs a system to ensure changes are made.
Janet: we have content, but we need to package it so people will want to read, use it. No one wants to read a narrative paper.
Bob: What will people who read this want to know?
Janet: One goal of leadership from states experience in all levels.
Jennifer: On the flip side how to foster leadership the community.
Sue: Bring people in and use their information.
Lee: How do you say this is the right thing and this is the wrong way?
Joe: Leader listens, reiterates to understand and implement it.
Ernest: People must get out into the community and interact. – training is best supplemented by actual (video) examples, instrumental opportunity- grab opportunities as they occur.
Sally: Look at incidents & see if there is a trend in the individual incidents.

Obstacles to key components:
Sue: ensure people can participate- transp., intercept, logistics… If advisory group has that problem, what about larger groups without the experience?
Sally: who to include? And how to expand it without threatening the original usual suspects.
Jennifer: Ensure usual suspects don’t disempower new consumers.
Janet: Use internet as education & consumers get used…thrown out computer for email& internet.
Joe: Business- prison- sends them back it. (nursing home lobby is very strong).
(Telephone Access Program? TAP)

More barriers to remedy inclusion:
. Ensure frontline operators get info
. Consistent way to fund for consumers
. Help care workers to participate
. Barrier to _____ from misinformation
. Medical model- i.e., is individual transitional at table for decisions
. Providers- what is the incentive for going
. How do you include people who are powerfully opposed to change?

Obstacles to goal leadership:
. Tenure at political level

Joe: if political tenure is 2 yrs, but systems change is 5 yrs - they may not care.

. Training new leaders (corporate knowledge is looming)

Sustainability (barriers to):
. Funding
. Lack of appreciations (interest)
. Public relations issue
. Change our cultures
. Ways to make these things relative to themselves
. Change in regulations

Key area- what you were thinking of obstacles and investments…If thinking from yesterday has changed. (revisions)…Any Suggestions for action.

Day Three: Getting Started: Lex Frieden

(Note: The day started with representatives of the three groups meeting with Dave Hasbury, graphic facilitator, to summarize the events/outcomes of the previous two days.)

Today we’re going to focus on unlocking the code of effective systems change. We’re going to do it in a way you haven’t done it before. Dave Hasbury is, as we speak, inventing what we did in the last two days. The first time I was exposed to it I was a little skeptical (you’ve got a cartoonist doodling, etc). Then I was fascinated. Then I was captivated.

I simply ask you to bear with the process. We’re dealing with issues we’re not accustomed to dealing with in the discussion about systems change. The reality is this is not a cartoonist. He helps us see from a different perspective.

Let’s use this as a critique of our work over the last two days and a look at how do the groups’ work relate to each other. After that, we’ll talk about where we go from here. I don’t think we’re ready for that right now. But, put that thought in your mind and begin to think about what it’s going to take to go anywhere from here.

I think we all share a common vision of people in the community. You’re here because you have something unique to contribute to the process. (Invites comments about the process.)

How many of you were anxious about this process? (A number of people raised hands.)
How many of you were bored?

.Group 1 was fabulous. We had people who didn’t agree—but didn’t agree for good reasons. It was well-managed and well-facilitated. Very constructive. Very realistic.
. We worked as a team. The paper served its intended purposes in this group. (Group 1, I think.)
. It was a safe environment to say what we wanted to say..\
. Our team did a good job. Jay was the alpha facilitator. It worked out because of how they worked as a team.
. The lack of structure probably made it difficult for facilitators.

Pictures from Preceding Days: Dave Hasbury

I met with representatives from each of the three groups. We went through a conversation to try to distill what happened. I’m going to try to feed back what I think I heard.

Quality Community Service (Group 1)

.Leadership development…one part was recruiting leaders…and developing a national academy of leadership…the idea of thinking ahead as to how we’re going to continue to grow in leadership…

.Second piece is professional development as delivered in one of the starting places in higher education...bring up to speed the college and university system…..model courses…updated textbooks…

. Accreditation…developing quality and the improvement of organizations…not as a penalty…but as an incentive to improve… continue to look at quality from the perspective of the people using the service…that the focus be on quality…

. Networking…we’ve got to do better at networking between states and have to find ways to move beyond the silos

. Products and materials…

. Policy…look at leveraging current experiences and ???… we also need to look at supporting policymakers by giving them the “how to’s” of an idea….

. Research and evaluation…collecting what already exists….develop new ways of evaluating…

Empowerment (Group 2)

.The first part of the meeting was just around the word. There are two kinds of empowerment. One is the power within a person, the other is associated with the enabling or disabling that happens when you meet up with systems.
. We’re going to accept that the personal power exists; but we want to talk about the second. How does the system get in the way of people exerting their own power? We need to get that voice as a built-in feedback loop.
. Connected to that, we had to come to terms with the fact that systems and individuals may have different priorities for making decisions…and what makes a good decision. In many situations, there may be an imbalance because of priorities that relate to the system and not to the individual. Observing how those two things exist and how do those different imbalances effect systems change.
. Let’s keep the outcomes of the consumers the bottom line for if we’re succeeding. The idea of customer satisfaction…not only did you reach the outcome…but the consumer was satisfied. In order to do that we have to find some new ways to measure.
. Flexibility to get out of the way… the “pyramid-al” point…an inverted power structure with the system at top and person at the bottom. The closer people can be to the resources, the more likely they will have power. How will the system get out of the way? How will the federal level out of the way of the state? Etc. How does the system get out of the way of itself?
. What happens when we know a criterion wasn’t actually followed, but the money still got spent? If we’re going to say something’s important then how do we enforce that importance?
Systems Change (Group 3)

. Leadership—not in any one area, but at all levels. One of the keys is the ability to communicate in order to get other people to come up with the ideas…across the spectrum. One of the strategies is to keep in the non-partisan realm...across political understanding (non-partisan framework). Pass on the legacy of leadership. Who will fall into place?
. Inclusion—all considered. Consumer, family, politicians—all with a partnership approach. Thinking about inclusion of parties in all of the processes at all levels. At different levels there are obstacles that get in the way…need to broaden the pool beyond (the usual suspects)…has to be non-token….conversations “with”—not “about.” For all this to happen, time and money and resources are going to be required.
. Knowledge—if you’re going to have a process that includes a wide range of people, you’ll have disparate amounts of knowledge among participants. The question is how do we level out the knowledge base? Find new ways to talk about things that will enable the spreading of knowledge to happen quicker, easier and more understandable.
. Sustainability—we need data collection to be able to say something is worth sustaining and here’s why. We also need to have a clear vision of what we’re trying to sustain. And we need to keep in mind the question of how will what we’re doing be sustained? We need to continually document success to fuel the sustainability.
. (Comment from a Group 3 participant: (We talked about the leadership rests within everybody…people can provide leadership from any level.)

Question from Lex: What are ways that things are or are not alike?

Responses:

.Leadership, empowerment, knowledge, inclusion are recurring themes.
. Leadership…people can’t really assume that role until they are empowered…it’s like the empowerment is the base of all of that.
. These things are totally interconnected….the voice of the consumer is the beginning of the entire thing and the way that voice is heard in the community are very different things.
. In the Systems Change group we talked about how these things are interrelated.
. In general it takes “x” amount of time to get a project done. The reality is if you bring people in at the beginning, you cut off all the time at the back end of getting people to buy in.
. A linear relationship ….a clear dependent relationship between the three.

Question from Lex: Are inclusion and empowerment necessary but not sufficient for systems change?
General agreement.

Comments:

. We have to document to know what to sustain. We don’t know how to document.
. Did the group define empowerment? We decided we couldn’t define it…but tried to discuss it at different levels…it’s a person issues…didn’t want to make it a values judgment based on whether somebody was exercising their right to be empowered or not. We also talked about how we could provide opportunities for empowerment. It went back to barriers in systems.
. Empowerment is really in the eyes of the beholder and varies between individuals. It can be just as empowering to say I don’t want to put in the effort to manage my own services,
. Moving from prescriptive to “aspirational” …focus on the goal as opposed to a checklist of “units.”
. I’m looking at this and asking, “Does this reflect my experience?” What, for me, is missing is the fight. In the background, it’s a huge fight. It’s about organizing. It’s about meeting in the back room, hiring lobbyists with money you’re not supposed to be doing it with. I don’t know how it gets expressed…there is something about organizing and strategy and understanding power. It’s about organizing, strategy, creating tension….
. What happens to a group that is trying to create this change…but the true group of power is not on board with the vision? We need to be able to agitate those outside parties….

Dave: Part of what she’s getting at is there is a backdrop of an absolute imbalance of power that exists.

There is a very emotional, imbalanced and unjust imbalance that is our starting place… what do we do about a backdrop that it is an unjust, imbalanced thing?

Dave: My sense is the imbalance goes at all things. It’s the one given you can put up here in the first place.
§ In gathering information for our paper, we found that, often, a precipitating event and a champion combined to create some systems change. In most of the states we studied, these weren’t unique crisis. What made it a different was how people used that crisis…it’s the leadership in framing…

. It’s not just the fight and imbalance…but the opportunities that come up
. Another backdrop is our aging population.
. There’s an economic incentive now in addition to the moral obligation we’ve had for years…
. We have to be more specific to really effect systems change.
. Sometimes people don’t know what’s possible…that movement, passion and fire created critical mass…
. It could fit into leadership if you could put in support and enable external agitation and organizing….
. Leadership…giving people skills in how to organize…how to use the media…how to agitate. In systems change, it’s a constant back and forth between moving forward with strategies based on sound practices…then it’s using those agitation skills IF things aren’t moving forward…
. How do you manipulate that passion and energy for systems change? Lots of little skirmishes and victories and defeats. What frequently is missing is the target.
. The art and science of systems change.. we talked about tools and ratings, etc. In so much of systems change there is an art and a science…knowing when to push, when to pull, etc.

Question from Lex: Are we still trying to drive toward an abstract concept?

We know what we’re about…but if we look at the other stakeholders, we’re not there.

Dave: So we’re talking about finding ways we can communicate across spectrums of people…

. It might be good strategy to include people who are aging in the systems change…
. The experience of an aging population can inform the disability population…
. Not just thinking of people here and now…but systems that support over a lifetime…
. Essentially, “them” is us.
. Kenneth Manton, Brenda Spellman, Liu ?????

Dave: What I hear in this conversation is something that got raised in Jay’s group…start crossing the “silo-ed” world.

.People in the aging system are very disempowered…..

Question from Lex: When we are embracing systems change, we are at the broadest level promoting change across the whole environment, not just Medicaid services, CMS, etc. If that’s so, how do we get past the boundaries were stuck on?

. Think three-dimensional….example of desire to work with SmartGrowth people…there are lots of movements like that we aren’t affiliated with…very well organized…make our stuff their lexicon…non-system, other movements…..
. Hook up to the aging
. Part of systems change is raising consciousness so that the societal context starts putting pressure on the system as well…

Question from Lex: Where do we go from here? You will receive much of the information back and you’ll receive more…I’d like to get a sense of where we can go from here. CMS is in a position to facilitate more of what we’ve been doing the last few days. Regardless of where this group goes, the community-at-large has an investment at moving more toward systems change.

. We really need to look beyond systems change…the need to reframe the issues to package and publish and disseminate our agenda in a way that is comprehensible to all and to begin to change the societal context….
who’s going to do that….
. Some group needs to get together to take the notions, design and concepts and begin talking about them in the context of a strategic or business plan.
. Reframing is part of the business plan.
. I (Jan) am writing a paper for the journal of community development that embraces the work we’ve been doing in Littleton… would be happy to send it along…. exceptionality v. universality.
. Could we start a listserv to identify who needs to do what? (somebody said hcbs.org will do that)
. Take a group like this and combine it with a consumer group and letting those two groups work together toward that action (action for ILRU)
. A communication vehicle…about what the efforts have accomplished…would be a really important short-term project. People could produce stories. ILRU could produce the publication….and the impact of the systems change grants.
. Developing personal and/or state action plans…

CMS: We’ll try `to tease out the actionable items…at least we can help to identify them.

. The strategic plan is critical to all of us….to also guide what areas CMS funds.

Evaluation by Participants

. It was useful. The empowerment group had a tough challenge on the first day. Bringing consumers together would break that down…
. I thought the process was great. Some of what I think would be a next step is to get a little more specific with actions. It was great to discuss these big ideas with people who have so much to contribute.
. This focused my vision on how I’m going to report my information. It was fantastic…very well organized.
. Wonderful that CMS could join us.

Closing Comments: Richard Petty

Rhetoric was an issue from the starting point—and how we move from it to real, concrete descriptions. We are still looking for that concrete, clear language about where we are going. We made far more progress than I would have imagined earlier because everyone was committed to the process. People were “genuinely present” and it was an incredible process. Worked so well because of Darrell—our “celestial navigator”

It was far more productive than I ever imagined. The harmony and synergy that were here will continue to grow and we will involve others, as appropriate.

Colloquium General Assembly Notes from Final Day
(taken from Dave Hasbury’s chart)

Question- WHAT IS MISSING?

Where does “The Fight” Fit?
· Injustice is the starting place- imbalance of power

Backdrop of…
· Economics- Resources are limited
· Demographics---ex. Aging population- Alliances- look for opportunities for Exchange Support
· Environmental

Art and Science of Change-
· (Science) here we have been thinking…

Can we articulate what we see in ways others can understand?

System Change is beyond Medicaid, Disability- beyond “Systems”- ex. Smart Growth, or Liveable/Wallable Communities = Societal (goes back to issue of Backdrop at the top)

Question- WHAT IS NEXT? (Chart)

ACTION WHO
Research “Model Community” Response to Aging Growth States
Reframe Issues Beyond “Systems” Change
Business Plan - Strategic Action- who, what, where… A Group like this- Future- Others- Consumers- CMS-Future $ Initiatives
N.H. (contextual paper) - Littleton Experience Jan Nisbet - Distribute to Group
ListServ to Share/Explore - HCBS.ORG WEB
Partner this Group to Consumer Group - ILRU Convene
Success Stories of Real Choice Initiatives State Initiatives - Stories ILRU Compilation/Publication
Step out of our SILOS to learn and share from/with other experiences Personal