By: Patricia Fratangelo, Executive Director
Bob Ciota, Deputy Director, CNYDSO
Michael Kendrick, Consultant

Introduction

This presentation is about an agency that previously provided traditional services that then changed its focus to more person directed supports. It is the story about Onondaga Community Living that is located in Syracuse that works under the jurisdiction of the Central New York DSO. Much of this story explains the dramatic changes that occurred within an agency that learned to listen differently to those who came to it for support. It is the story of how an agency reorganized because of this, what impact it had on its existing services and what impact it had on the development of new services.
Much of this work meant forging into new areas and breaking new ground to enable lives to look differently for people. Traditional "programs" were no longer the focus, new and more unique personalized options were being recognized and developed. Broader interpretations of traditional rules and regulations were pursued that would allow for more person directed options. A partnership had to be developed between Onondaga Community Living, those in key positions at the CNYDSO and with those at Central Office at OMRDD. OCL forged ahead with each new development one person at a time. Each person's story was different and each situation set up required different learning and atypical supports.
This paper will share some of the history of OCL and where it is at today as written by Pat Fratangelo, Executive Director of OCL. The paper will also share the perspective of Bob Ciota, Deputy Director of the CNYDSO in their partnership with this organization. Finally this paper will conclude with several comments from Michael Kendrick, based upon an 18-month study that he conducted at OCL on person centered supports. How it affected the agency and its impact on each person's life.

The History of OCL

When the current Executive Director came to OCL in 1990 the agency was operating group homes and involved with supported employment. There was no new development slated at that time. It was this Director's feeling that if anyone of the current residences wanted or needed something different in their life then OCL would do what it could to make it happen. At that time though the staff, families or people supported themselves thought that they were not skilled enough to live in an "apartment" setting or without others with disabilities.
New referrals began to come in. Since OCL had no property to fill, those at the agency began asking what each person would like to have happen. The planning began to ask some very different questions. Where do you want to live?¼not what slot OCL had to fill. Who do you want to live with?¼not this is the vacancy or the group OCL has for you to be a part of. What kind of support do you need and want?...not just typical staffing. What resources do you bring to the planning?...not just what OCL was going to do.
As OCL dug deeper into what relationships a person had, and what places and situations brought out the best (or worst) in a person, great information began to evolve. When OCL looked deeper into the vulnerabilities that the person had and the necessary safeguards that needed to be put into place, some interesting pictures began to emerge. People were not asking for traditional group homes or supported apartments, although they may have originally thought that was all that would be available. Many knew exactly where they wanted to live, some knew exactly the person they wanted to live with or have as a staff support. Others knew clearly that they did not want to live with others with disabilities.
So in the beginning stages, back in the early 90's, the new people coming in all began to be supported in some very unique ways. For example, the first gentleman was introduced to OCL when his mother was in her deathbed. She was leaving the home in trust to her disabled son. We were able to plan for his support while she was still with us, and set up daily staffing. He found a gentleman, also with a disability, that he wanted to share his home with. We also introduced them to a non disabled gentleman that would live there as a good role model and friend. His house was certified by OMRDD. How different his life would have been if we had moved him from his neighborhood, away from the home he loved, away from the neighbors that knew him.
Another person had tried living in a group home and was injured to the point of needing hospitalization. By the time OCL met him, he was back home living with his mother with the family stating clearly that he would never move back to a place like that! Because of his physical needs and adult stature, his mother was no longer to adequately care for his personal needs because of her slight build. When OCL really asked what she wanted, she just wanted someone to help them out at her home and ideally help to get her son out to do things that other 24 year old men did. As we looked closer to all of his needs and what kind of support would be required, we then asked her if she had anyone in mind to do this. She thought those at OCL were kidding! What? Get the support in her home that they needed and have the person work with her son that they wanted? It was too good to be true. As time went on though they were able to hire a full time support person of their choice and get back up support through another organization for more of his personal care. They also chose this person. Seven years ago this was developed and each of these supporters are still with this gentleman. The relationships they had came long before res hab funding. Res hab funding now gives them an added benefit to spend the needed time with him that is so necessary.
There are many more stories that can be shared but the important lesson to speak to here is the learning that was happening at OCL. Originally people thought that to live away from a group you needed to be skilled. Now they saw people who were often more needy that those in the group successfully making it in their own personalized arrangement. So if it could happen for "stranger" that came to OCL, why could it not happen to those within OCL that we knew well? One group of staff began to look at these questions and roadblocks carefully. Then one day the House Director of one of the group homes came to the Executive Director and said, 'We think the people at Oak Hollow do not like living together and that we need to look at different arrangements for them.' That simple statement, then lead the agency down a very lengthy and complicated path towards a group home closure.
At this time now, in the year 2000, OCL has successfully set up personalized arrangements for thirty-six people. OCL has successfully closed one group home and is currently in the process of closing another. OCL also continues to provide supported employment and does so with one to one job matches in the community. The agency has now developed a vocationally oriented Day Hab service that enables each person to volunteer in one to one job matches in volunteer work in the community, giving them the actual experience necessary for a paid position.
The focus of personalized supports is a thread that goes deeply through the agency on all levels. It is not just another program type within OCL, it is now a way of doing business and of delivering supports.

CNYDSO Perspective

The Central New York Developmental Services Office, formerly Syracuse DSO, was first approached with the notion of reconfiguring a supervised congregate community residence operated by Onondaga Community Living at a point in time when the plan to close the Syracuse Developmental Center was in full motion. Agency (DSO) resources were being directed in a priority and targeted manner to develop community placement outcomes for the people who were living within the institutional setting. Although the proposed reconfiguration to more individual and personalized community living options was intriguing there was immediate concern among district managers over the potential cost, the ability to provide adequate and consistent staffing and support, and the incongruence of closing a "group home" at the same time that these types of facilities were being developed to accommodate the goal of institutional closure. In addition, there was no previous experience to utilize as a basis to assess the adequacy or flexibility of existing funding options to support a more individualized model of personal supports. As there were no other group home closures to look back at.
The availability of the Home and Community Based Services Waiver (HCBSW) did offer some opportunity to individualize but even this funding framework was biased at that time toward the more traditional certified and congregate type of residence. After careful consideration of the issues, the District Office made a decision to support the development of a more specific reconfiguration plan within the following parameters:

1. The new configuration of service could not exceed the cost of the existing congregate setting;
2. The existing setting of the community residence would be made available for use by other residential service providers to address unmet community needs; and
3. Onondaga Community Living would be asked to assist in the larger institutional closure plan. If these conditions were met, the belief was that the proposed reconfiguration could become a reasonable fit with the District's mainstream agenda, and as such attract support within the various review and approval levels of OMRDD's Central Office.

Once the decision was made to advance the proposal from the concept to design phase the role of the District Office became one of technical assistance and advisor. The posture shifted from telling the provider what could or could not be done to one of asking what outcomes were trying to be accomplished. The District staff worked closely with Onondaga Community Living to identify fiscal solutions that could be packaged to support person centered outcomes. All of the available OMRDD funding streams including the HCBSW opportunities, individual support service contracts, and family care were carefully explored in relation to each person's circumstance to craft a support package. In each case the regulatory funding requirements were carefully examined to insure compatibility between the individual plan and funding rules, and in each case it was evident that solutions could be crafted. This was a time consuming process requiring the attention of District staff in both the design and development activities, as well as the presentation and explanation to the OMR/DD Central Office and the Division of the Budget. In every case the proposed funding package was eventually approved. This experience demonstrated that it was possible to achieve highly personalized outcomes that could be supported within existing OMR/DD funding streams, although it is clear that existing pricing levels continue to favor the more congregate types of residential settings.

Comments by Michael Kendrick though His Work as a Consultant

The OCL experience is important for New York State. The agency's work constitutes a grass roots attempt within the state that explores what may soon come to be a growing dimension of the array of more personalized strategies of support in the field. The reason why this is important to look at is due to the way that services have been traditionally developed. There is a growing sense that conventional services, which have typically included the grouping of people, have simply not been responsive enough to the personal identity and needs of individuals. OCL's contribution is in the fact they have been working away at this concern on a small scale but nonetheless with notable and helpful results for the individuals they serve.

People with Disabilities Begin to Have More of Their Lives Given Back

Perhaps the most significant contribution that this agency can offer is that the various people served by OCL are getting a credible chance to be the kind of people they have the potential to become because of the way this agency has done services. This has been accomplished on several crucial levels.
The first is that each person largely receives their supports from OCL in highly individualizing arrangements both at work and at home. Each person supported by the agency only rarely has to have what is happening in their life constrained or disrupted by what is happening for other people being supported. The reason this is possible is that OCL does not combine the people being served in order for them to be supported. In this way the consumers of service do not need to have the meeting of their needs so directly tied to what is or is not happening for other people served. This is not absolute, however, as all of the consumers draw upon the resources of OCL and thus collectively, distantly and indirectly influence what each other gets by way of support. Nevertheless, it is still fair to say that each person's (unique) pattern of support directly grows out of who they are.
The second important contribution of OCL is that there is not some kind of formalized or prescriptive planning process for individuals in the person centered planning genre. Rather, it is that OCL has tried to clarify and deepen the more important aspect of developing person-centered attitudes, beliefs and ethics. They continue to deepen this even further by working collectively with board and staff on retreats that dig deeper into the personal realities of individual lives. They regularly welcome visitors and evaluators, and continually open their minds to what others in the field both nationally and internationally are doing that work to improve individual lifestyles.
This dimension of a personalized service is often just presumed to be in good shape as long as one has high-minded goals, language and intentions. Where OCL has significantly moved this question along is in presuming exactly the opposite! While OCL has such goals and aspirations it does not assume that these are achieved just because they are desired or desirable. It has had to recognize quite repeatedly that the lives of the people it supports are anything but ideal even where forward progress has been more than evident. It is also clear to OCL that a "personalized" set of supports does not automatically translate into better life options. In this sense, the supports may be individualized but the quality of what the person experiences as their life might still need work. It may even be that the overt individualization of supports hides failures to do the right or best thing. For OCL this means a need to constantly evaluate what has actually worked for the better. This means not taking things at face value just because they were well intentioned and inspired by positive goals.
OCL quite correctly believes that if they had better approaches to supporting people then the lives of the people they serve would be much improved from what they are today. They also quite rightly realize that person centered language alone or goals themselves are not enough unless there are highly deliberate intentions and actions to make it happen. This is not meant to mean that OCL has not improved people's lives in any number of important ways. On the contrary, they have been above average in this regard. What distinguishes them is that they do not believe they will ever be satisfactorily "person centered" since the lives of those they serve are simply too dynamic for OCL to ever get to such a point. In this respect they feel their work is never finished, with the overall goal of being person centered for each person never being met.
Instead they concentrate on the struggle for "person centeredness" as a problem not of outcomes alone but, even more so, a question of how to be with people in such a way that the person counts. In such a framework the personalization of supports and lifestyles becomes not a process of settling into the "right" model or pattern but more one of having to continuously undo and recreate patterns in people's lives so as to discover what might be better. This is "trial and error" on one level, as OCL does not have a formula for what is best. There needs to be a lot of guessing and therefore a lot of changing of minds and approaches. This kind of process is at first unnerving as it seems to imply that OCL lacks ideals and values and will simply do whatever is judged to be important on a given day. In some ways this is, in fact, what they do. However, this would be both misleading and incorrect. OCL does have overarching values.

Onondaga Community Living's mission is to empower and
individually support people with developmental disabilities to live
full lives as integral, respected members of their community.

We achieve this by:

1. Listening to and focusing on each individual
2. Helping each individual to build positive
   relationships with others.
3. Supporting each individual's effort to achieve
   personal fulfillment.
4. Exploring and developing ways to support each
   individual is his or her own personal pursuits.

Their mission provides a kind of anchor amidst the flexibility that they so intensely pursue and offer on behalf of people. This mission revolves around the worth of people as people and the need for each of them to have access to the same valued roles, lives and experiences in community life as do all other people who live in New York State. This is not so different than what any agency would espouse. OCL believes that they key is not their goals but the extent that these take hold in people's lives. This emphasis on translating hopes into practice with the person themselves as a guide is the heart of their sense of what their "ethic" is.
The attitudes and ethics the agency takes to make progress with people's lives is the heart of the process of learning to more deeply listen to and be guided by what people's lives are like and what they could be. The search for a good life for people means cultivating within oneself and the organization enough space and occasions for the many reflective, exploratory and sensitive discussions and other events that keep people's minds on who they serve and what it is that they might be needing. Sometimes this comes by way of the words or other communications of the person and those who love them. Sometimes it comes because someone is looking for the signs of what is being said but not spoken. It is difficult to find a single method that can achieve this and so OCL has much more concentrated on the developing the "way of being with" in which this is more likely to occur.
By "being with" it initially means the answer to the questions of "what are we here to do?" and "how is this to be done?" But it goes further to the question of "what do we need to be like as people in order to do these things"? Providing support for people at OCL isn't a matter of following a job description but more an ongoing personal challenge to be the kind of people that are needed by the people OCL supports. Thus OCL tends to emphasize personal engagement, commitment and contribution with the emphasis on the personal. OCL knows that it is only as good as the efforts and qualities of each person involved. Consequently, helping people to do better has been a major investment of OCL. This is based on the belief that if the people supported are to keep growing the people doing the support also need to be growing and developing. They realized that their work would never be over as the people they served kept learning, growing and changing, much the same as none of our own lives are ever static or finished.

Administrative Practice

OCL also has discovered that the world of the bureaucracy and the need for good business and administrative practice is very important for establishing the kinds of stability and flexibility that they see as necessary for sound individualization of support. OCL has discovered that it is not necessary to temper one's vision in order to keep high administrative and financial standards and practices in place. Surprisingly, it has been the development of and the staying with of a vision for each person as having their own lives and supports that has given them the motivation and determination to persevere with the many obstacles that exist in any system to getting things done. The change they made as an organization is that the dedication moved from program type, to the development of services based on each person's life story and personal need. Thereby changing the nature and focus of their internal work and communications with the regulators and funders. In doing so, they have discovered all sorts of unexpected supporters of this vision of people having better life experiences including board members, families, neighbors, employers, the people themselves, public officials and many others. It has taught them that change also comes about one person at a time and it is important to look for the good that each person can contribute towards this goal.
It may surprise people how efficiently OCL is managed as many people equate vision with recklessness and a disregard for sound and conventional administrative practices. OCL has never found this to be true. It has discovered that while its programmatic directions may seem radical in a system that focuses too much on organizations than people, these directions are actually very practical. By concentrating on what is best for individuals there is more likely to be a better use of resources (ie improved cost benefit), more innovation due to the need for flexibility, more consumer and family satisfaction due to their greater influence, and increased outcomes due to the focus on getting more relevant personalized supports. All of this needs the presence of an administrative system that works efficiently so that people can concentrate on the more important programmatic questions.

Vulnerabilities and Safeguards

A third crucial level of progress made by OCL is in the effort to recognize and protect the things that are important for the well being of people as they go through the process of change. The vulnerability of all people, and often especially people who live with disabilities, is important to take into account and to positively compensate for this wherever this is practical. This ensures that the person is placed in less danger of unfortunate things happening to them. The people who support them as well as others who care about them play a crucial and usually irreplaceable role in becoming a key element of both defining and creating needed intentional safeguards. "Safeguards" are typically a mix of measures taken to ensure that a person's well being and potential have as good a chance as possible to develop. These are put in place to ensure that when risks are taken they are done so consciously and with a view to considering the person's best interests.
The kinds of vulnerabilities that are common for people served by OCL would be recognizable to many agencies. These include the normal vulnerabilities associated with all human beings such as concerns about health, safety, relationships, money, work, family, future options, etc. Then there are the kinds of vulnerabilities that derive from living with various kinds of functional limits associated with disability such as poor eyesight or hearing, unsteadiness, difficulty understanding some concepts, naivete' and gullibility, dependence on others, overprotection or underprotection etc. Additionally there are the effects on the person of living as a member of a group that society socially devalues. This includes low expectations, fear and aversion, negative stereotypes, labeling, and so forth. Any number of actions might be needed to deal with these risks and OCL feels that good support means doing this as conscientiously as possible. Not everything can be foreseen and offset but maintaining reasonable vigilance can be achieved.
"Person centeredness" is for OCL not a matter of simply doing whatever is wanted by the person or those around them at a given moment. It is a struggle trying to discern what is "best" for people, as this is not something that is always so obvious. The whole issue of rights, risks and responsibilities is important not only at OCL but throughout the state. OCL also has to struggle with these questions and has found that this is impossible without also dealing with the "best interests" question. OCL has seen its role as to be committed to people and their best interests while at the same time letting the person be as central as possible to how this question gets answered. This is a very difficult ethic to maintain, as it is so easy for people in authority to organize and decide things in a way that suits their needs and wishes. OCL recognizes this danger but does not assume that it will ever be one that they can escape or avoid. There is always a risk with people that we see things through our eyes and not through the experience of others.
Consequently, many people have found that one of the chief sources of danger to people's well being might be the very people who care about and support them. This is more likely to be true when these people think they "know best" or feel that what the person wants or needs is something they "already know". For this reason OCL has realized that it needs to have safeguards against itself and the unhelpful tendencies it has as an organization.
For OCL this has come down to trying to deal with its own shortcomings, limits and human frailties by acknowledging these as both present and as posing a problem. By being willing to examine its weaknesses' OCL has been able to find better ways of dealing with them. This has not meant that OCL has eliminated its weaknesses at all' as this is not possible. However, by focusing repeatedly on what is and is not working for the people it supports, its own shortcomings that need attention tend to get attended to. Equally, by holding many sessions to look at people's lives and hopes OCL finds itself continuously pulled back to better priorities and perspectives. If it let itself "off the hook" too easily this would be less likely to occur. Hence, for OCL it has proven important for it to become its own friendly critic.

For further information contact:
Patricia Fratangelo
Executive Director
Onondaga Community Living
2827 James Street
Syracuse, New York 13206
315-434-9597
315-434-9367 (fax)
patfrat@oclinc.org

Bob Ciota
Former Deputy Director
CNYDSO
800 South Wilbur Ave.
Syracuse, New York 13210


Michael Kendrick
4 Bullard Ave
Holyoke, Mass. 01040
413-533-3511
413-453-8071 (fax)
kendrickconsult@attglobal.net

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