I feel both very honored and privileged to have had this opportunity to visit and learn from two different countries. In some ways these two countries are very similar to the United States and in other ways we are so different from them. I also have the very good fortune to work with such a wonderful agency (OCL) that has opened its mind to a different way of doing services. I have learned so much from my experience at OCL and feel fortunate that the Board, staff and those we support allowed me to be away to present to others about our experiences, which in turn helps people in other places to think more creatively about the work they do on behalf of people with intellectual and developmental disabilities. So thank you all once again!

How OCL Operated in the Director's Absence

There was a lot of advance warning on the upcoming trip as I was originally asked to present in New Zealand close to a year ago. From that original invitation the trip grew in size to do numerous presentations in two countries. At trips end I did a total of 30 presentations - some to agency staff, some to governmental staff, some to families, some to self advocates, some were full day, and some were part day. I worked in the morning, the afternoon and several evenings. I had lunch meetings and dinner meetings. I also had the opportunity to visit and work directly with two agencies in both countries. Because of the length of time that I would be away and my increased work load, it was important to think about how the organization would operate without its Executive Director near by. The Board allowed me to work out a plan with the staff and report back to them on the strategy, which they later approved.

The staff did not feel that they needed an acting director. What they felt was important is that they work as a team and brainstorm together to make decisions while I was away. They decided to meet weekly. A team of five staff that included Paulette (HR), Philip (Vocational), Tricia (Connections), Beth (Residential) and Lauren (Service Coordination) took up this new role. The Administrative team, which included the Business Office, continued to meet according to their monthly schedule. Agency team meetings which included the above people, plus Coordinating staff continued to meet bi weekly. Pat's email address was given to everyone and she asked for minutes of all meetings, board reports, committee minutes and other materials as the staff or board deemed it necessary. Pat also agreed to call back once a week to talk with anyone who needed. Tricia was the main contact for the Board President, Ronald, and was to keep him abreast of issues as they came up. Tricia was also the main contact for the agency lawyer on a legal issue that plagued OCL in the Director's absence.

The organization seemed to run flawlessly when Pat was away. Pat received minutes of all meetings and copies of reports or letters that were being generated or responded to that were of utmost importance to the organization. Most information was complete and left little for Pat to do. At times a staff member would contact Pat regarding input on an issue which Pat emailed the information back. Email was checked most every day and most days there were numerous emails from the staff to keep Pat informed. Pat also sent a couple of emails to a few board members and got a couple back from them. The state also sent a couple of emails to Pat which Pat got back to them on. Most phone calls into the organization were fairly short with no real need to talk with anyone in great detail.

The organization ran wonderfully in the director's absence. Staff and board were both glad to have the Director position back, but it was clear that they could run the organization well without this director's direct involvement. Individual meetings with the majority of the administrative staff indicated that they made good decisions in the Executive Director's absence. The Board and committees met as scheduled and continued their work. Both the staff and the board at OCL are very strong. This trip showed that leadership is not dependent on one person but it is the collection of people that makes this organization work so successfully.

A good example is that while the Director was away, the Board and key staff met with two DSO Administrators regarding the legal problem that affected OCL. As one staff put it, we have a "kick-ass board!" By all accounts the board did an excellent job of holding their ground on the issue at hand and could not let the state sway them. According to what the staff recollected, when it was indicated by the state that Pat may not have told the Board everything, the Board immediately spoke up and defended their Director in saying that they were completely informed and that they would not talk about their director's involvement or lack of without the Director being present. The staff were very impressed with how the board handled themselves and stood their ground. They were very proud to have such an informed, knowledgeable and professional board represent them.

So my hat is off to everyone at OCL for doing such a fine job and working so well together while I was away.

New Zealand

I must say that New Zealand is a deeply beautiful country in both geography and with its people. There is something to say about being small and in the middle of an ocean, away from the rest of the world. What is most impressive is the deep respect that they show to their indigenous people, the Maori's. The Maori culture is prevalent, especially through the North Island. When you visit New Zealand you are surrounded by Maori culture. Maori is an official language of this country. Maori words, names of places, and villages are prevalent. There is a deep respect for this culture. In every place that I presented there was a welcoming ceremony by the Maori people of that area. There would be Maori prayer, rituals and song, along with the acceptance of those who were visiting which in the true traditional included the Mairi persons holding both of the visitor's hands while pressing their nose with the visitor's.

I had the opportunity to visit several marae's which is the welcoming center of the village. You have to have a deep respect and not enter unless invited; often times you are asked to take off your shoes. There are wonderful wooden carvings that the Maori people do that depict their ancestry.

In terms of services for those with disabilities, I listened to a presentation by a group of Maori people who developed services for their own people. In the Syracuse community there is the minority network which I was also fortunate enough to present at this year. What I learned though in New Zealand impressed on me much more the importance of having the right people deliver the service. The carving, the weaving, the songs, the language, the ceremonies, the culture is so important to the Maori people, and it cannot be reproduced by a non Maori. And if those providing service are not thoughtful to this, it would be easy for a Maori person who is disabled to be stripped of his culture and heritage in the name of services that meet the disability need but not the person's cultural needs.

My original key note was for the first national Supported Living Conference in New Zealand entitled, Nothing Special. I was the opposite of John O'Brien. John is a man who has worked at our agency and did an evaluation several years back. He does a lot of publishing and consulting. Each day either he or I would open the day and the other one would close it. The conference was three days long and had close to 400 people in attendance. It was a very powerful event. A national advisory committee on health and disability also launched a report on supported living and changes that they would like to see happen in New Zealand entitled To Have An 'Ordinary' Life - Kia Whai Oranga 'Noa' to the Minister of Health and Minister of Disability Issues . It was well received in an opening ceremony by their government.

Lorna Sullivan is a woman who spent a week visiting us about 5 years back. She has been instrumental in shaping how New Zealand looks to change its system. She worked on the above committees and put this first national conference together and because she had to turn people away, she planned additional one day events, one on the north island and one on the south island which I also participated in at the end of my trip. So I stayed in New Zealand for the first three weeks and went to Australia for four weeks and then returned to New Zealand for another four days before returning home.

There are some wonderful stories about people's lives in New Zealand and there are many new and very small agencies struggling to do something different. But still the majority of housing services for those with intellectual disabilities are in congregate situations. It seems similar to the US in that if people fight hard, they get something that better meets their needs. It is possible but not prevalent, and what has been developed is as remarkable as what we have done here, if you look one person at a time. From what I can tell though, I do feel New Zealand is more advanced with the vocational services than we are in the US. I did not hear of many sheltered workshops. Most organizations fully support community employment. I actually stayed with a woman who is the Director of a community employment agency and visited her office, which is similar to OCL's in that it provides no services within the office space. All services were community based.

I cannot leave New Zealand without telling you how gorgeous it is. First of all physically, they are volcanic islands that have grown out of the ocean. The shore lines along the south island are dramatic and beautiful. Mountains reach out from the ocean. The roads are hilly and winding and on top of it you are driving on the wrong side of the car and on the wrong side of the road! The Southern Alps were snow covered and breathtaking. Although the two islands are only 1100 miles long it is impossible to see it all in one short visit. I saw beaches, mountains with trees, mountains that were bare, mountains with snow. I saw steam rising from the earth and touched steams that were hot from geo thermal activity in Rotorua on the north island. I saw kiwi birds, ate home grown kiwi fruit and met kiwi people.

What was most remarkable about this country was the genuineness of the people who live there. They are very sincere people who are not bothered by the rest of the world and have a very peaceful existence. The culture is slower paced, not assuming. People are polite and do not get worried or bothered. They take things peacefully as they come to them with no stress. There is a lot to be learned from their existence. I would think that high blood pressure is not even possible within such a culture. Being there felt like taking a giant deep breath. One cannot help but relax when you are with such a thoughtful group of people and culture.

Australia

I literally was all over this country, which mass wise is the same as the US. I started out in Canberra, then went to Melbourne, then to Perth, then to Brisbane, then to Sydney, then to Coffs Harbor, and then back to Sydney before leaving to go back to New Zealand. I was in five states and actually flew through two other states. I was also invited to Tasmania but unfortunately decided to decline the invitation. I saw more of this country than most people who live there!

Margaret Spaulding and Brian Corley are two people from Australia that visited us about 5 years ago. They co hosted a conference in Canberra, the nations capitol. It was a three day event in which I was one of four keynote speakers. The others were John Armstrong, a wonderful man in the SRV movement who lives in Sydney; Michael Kendrick, who many of you know, he did a study of our agency for OMRDD about six years ago and has worked with the board and our staff in the past and; Di Turner who is the Executive Director of a agency in Tasmania called Plane Tree Studio. I did two key notes and three four hour workshops. This was also a very powerful conference. They picked great people to think through issues with them and they worked us hard to get as much information from us as they could! They also put in great entertainment each day. By the end of the three days people who stayed with me were solid. It was a very powerful group that I worked with.

Also a new experience for me about this area was the kangaroos! I stayed with the Corley family in the country side outside of Canberra and kangaroos hang out in that area just like deer hang around my house. We would see them crossing the road while driving at dusk or on the hillsides sunbathing as we went to work. It was wonderful to see them. From here I flew to Melbourne.

Just south of the Melbourne area I also visited Phillip Island on a personal few days after the unexpected death of my dear friend, Tommy. Here I spent some healing time with the ocean, koala bears, penguins and a wonderful cabin all to myself. It was a nice area.

In Melbourne, I did a combination of things. I met for one full morning plus had a lunch meeting with governmental staff. I then worked with a group of staff from a private agency called Melba one afternoon, Anthony Kolmus is their Director. The have such a picturesque setting to work in. It was lovely. Anthony and I have corresponded through email for several years. He coordinated everything for me in Melbourne. It was nice to finally meet him, his family and his staff. He is a wonderful man. That evening I presented to forty families. The following day I did a full day open presentation. Each presentation was received well. I could tell that I was talking beyond their reach at times as their service system in this state is just beginning to do more personalized work. Deb Rouget from 'Person to Person' is the only project in that area that I know of that attempts to work one person at a time. The energy was high though and the full day presentation was a mix of agency people, governmental staff, families and people with disabilities. The room had over 100 people in it but still I was able to keep it open for discussion which helped to mold the day into what they needed. Families at the evening gathering seemed the most awe struck. After I shared the story of Debbie and Cheryl, at one point in the family presentation a parent asked,"What does this have to do with Australia?" They saw it so far beyond what was possible. But I was able to help them think though how it could happen for someone anywhere as long as you had a vision and could find people to help you, because that is what Cheryl had done. The families that night left with more ideas and were sharing information about agencies and community funds that could help them. Deb Rouget coordinated this evening and she was quite happy with its success. People stayed after for about an hour asking more questions.

On the west coast in Perth, I found that Australia is quite different depending on the state. In Western Australia services seem to be much more traditional. I spent a lot of time with governmental staff who took people that no one else would serve or that had no money available. Consequently, they had several people with pretty severe behaviors all living in these flats. They toured me through and all it was sadly was a small institution. People had separate rooms and separate locked areas that were connected by hallways that got to the other flats. There was limited furniture, nothing on the walls. Numerous repairs being were being done. I shared with them some stories of Michael and Paul, which according to them are very much like the people served through these flats. One man really caught my attention. He was a man who was constantly kicking out windows to escape. So they put in heavier glass, which he continued to kick in, so they put in stronger screens outside of the glass which he continued to get through. While I was there they were building, as one staff explained, "a bird cage". Their goal was to trap him in the yard area after he left the building. He came home that day and saw what was being done and attacked the work the contractor had done and tore down the caging that was being put up. If this man is not telling you he does not want to be there, I don't know who is. I am so attracted to people like this that are so misunderstood. It would be wonderful to do some planning for him and get what he needs. I would like to keep in touch on this man and see what they eventually do.

On the flip side, I was introduced to Peter Dunn, a Director of an agency called My Place. According to Leanne Parsons, a governmental staff employee that I met in the conference in New Zealand and who befriended me after that, she felt that Peter was the only person in Western Australia that understood or was willing to provide personalized services. He also ran the only for profit organization in town. I cannot say that I did not enjoy meeting him and spending the evening together but it is clear we come from different perspectives. I will use Debbie again as an example, according to Debbie's DDP scores she is eligible for more money than we asked for due to her needs, but because of the way the services were put together and the family's desire to have non disabled housemates in unpaid roles, we did not have to ask for all of the money she is truly eligible for. At My Place, Peter stated that they always go after the top dollar and if it is not used it is put back into the organization. The Director feels that if the needs were to become higher he would then need the money and may not be approved for it later and does not want to take that risk. Their office space is phenomenal. It is very homey with very nice furnishings. Unfortunately, it makes OCL look like the Salvation Army! I did not have the opportunity to meet any people supported or visit them in their homes.

I think we at OCL are more like grass roots in what we do and how we plan than where I visited. I am not questioning that they are not working with people that maybe others did not want to serve, but they do so with a potentially different focus. Peter is the owner and Director. My Place has no Board of Directors because Peter feels that they may not look at things the same way and would possibly change the focus of the agency. Peter owns the agency, makes the decisions, and decides on how the money is spent. At OCL we work with the circles of people in someone life to help them to make their own decisions. We work on getting only the money that is needed. We share leadership and knowledge throughout the agency. I wonder with an organization that relies so heavily on its director if a two month leave would be possible? Would the agency need him more deeply than I am needed at this time? It is just a different way to think about services. I enjoyed spending the evening with him.

In Brisbane there is a bubbling of innovation all over the place. There are all these little organizations being developed to do personalized services that are incorporated with as few as three people and with the majority being somewhere around 10 - 15 people. OCL is a huge organization in their eyes. Meeting the people from these agencies proved to me again how worth while 'Connections' is and how it can spin off with little problem as long as the right people with the same mindsets ban together. I met with various groups, some were very progressive providers and I wondered if I had anything to offer them. I really wished I had the OCL staff with me to do some brainstorming with them. They were a great group grappling with very real issues similar to what we have at OCL. I also met with a group of families one evening. It was the first presentation I ever did holding a glass of wine! It was a very comfortable group that was sincerely thinking about non traditional ways of getting services for their loved ones. I also met with a group of more traditional providers, but I found that they had their eyes open to new ways of doing services. A couple of these agencies had closed some of their group homes. I also met with a group who were in charge of planning for the last 17 people from an institution that was closing. They had hired several facilitators that were to work with the families to make decisions on life after the institution. I felt it was very powerful to have these people involved which made the likelihood of something more personalized a greater possibility.

So why the difference in how services are developed in Brisbane, Queensland that I had not seen in other places in Australia? I spent some time talking through this with several people because the atmosphere of innovation seemed so prevalent here and were even hitting what people considered to be the more traditional agencies. I believe this happens because of the involvement of CRU.

CRU was founded by a person by the name of Anne Cross as a community organization that would work with other community organizations on change, vision building, values and safeguards. CRU has developed an Education and Development Program, a Leadership Development Program and an Information Program. They work on service reform and take on the responsibility statewide in Queensland. CRUcial Times is a publication that is put out four times a year. It is a compilation of writings by many people who are struggling with and succeeding with person directed services. They have many publications and have developed a library and work to strengthen the capacity of families and personalized services in developing more leadership roles. The ordered about 25 of the OCL books, One Person at a Time and sold them all. They plan to order more for their library. Jane Sherwin is the current Director. Anne Cross has become an international consultant.

I do believe that the focus that CRU has on bringing people's thoughts together in some organized fashion helps to build upon the knowledge base in their state and gives people connections with others who are struggling with the work. They readily bring in people to the state to broaden their perspectives and work hand in hand with organizations to bring them along at their own pace. The availability and structure of CRU is quite unusual when compared across Australia. I can compare it somewhat to Onondaga County with Syracuse University with the Steve Taylor at the Center on Human Policy, Wolf Wolfensberger at the Training Institute and Doug Bicklen with Facilitative Communication. The presence of these researchers in this community has helped to broaden the thinking of its own community members which makes the possibility of something more innovative to occur. I know OCL has benefited greatly from the contributions of each of these men and their work to this field and we have tried to apply what we have learned from them (and others) in the work we do.

My last stops in Australia were in the state of New South Wales where I was in Sydney, Bankstown and Coffs Harbour. I worked for an agency called People with Disabilities (PWD), an advocacy group for people with disabilities. I did two full day presentations. Both were received quite well. The people in Coffs Harbour, which is closer to Brisbane, seemed to be the most interested in OCL's work. We had wonderful discussions so much so that I could have turned each full day presentation into two full days. This was recognized by the staff of PWD. I have already been asked to come back to spend a week with them in the future. I told them I would consider it but not at least for another year.

Conclusions

This was such a wonderful experience. I met many wonderful people and have developed some world wide friendships. I have come back with a much deeper understanding of our work here and a much deeper understanding of our mission.

There are people doing good things where ever you look. I found them in New Zealand. I found them in Australia and we find them in the US. I find across the three countries that those who have succeeded in getting what they truly needed and wanted have found people to band with to make it happen and have fought hard to make it occur. Great things often come with great struggles but in the long run they are very worth the time, energy, tears and frustrations that were involved. I also find that when someone goes out of their way to open the minds of others (Anne Cross, AUS and Lorna Sullivan, NZ) the possibility of opening the minds of others towards a different way of thinking is greatly improved.

New York State was looked at in different ways by different groups. Some saw us as highly innovative. I had to remind them that most of the state is still congregate living and that even within this traditional state more personalized work can and did occur. NY State was also looked at as having a very confusing funding system where people's services are piecemeal with day hab, res hab, PCA, MSC, supported employment etc. I had to remind them that you needed to work within the system that you have and even with a piecemeal system more personalized alternative can and do happen. NY State was also seen to be more generous with funding in that people could exceed what they were eligible for and still get funded. And on the flip side it seemed very peculiar to those in Australia especially that we did not take all the money that some was eligible for if it was not needed.

The funding systems in these two countries look holistically at a person's services. What ever money a person gets, they can use it in any way. But on the flip side, there was a more stringent wait list to be eligible of funding that we have here and people's dollars are tied directly to their disability scores. I think the point is there are many different systems out there and that you need to be able to work within the system that you have and not just use it as an excuse of why you cannot get what is needed. Creativity enables one to work the system in a way that meets a person's needs.

I found a family in Brisbane that has a daughter with a physical and mental disability that was not eligible for funding. The family set things up with natural supports, using an unpaid "flat mate" and have a variety of family and friends folding into the picture regularly. The family questions now if money will ever be needed. Where there is a will, there is always a way!

We have some wonderful people in this country that we have connected with and benefited directly from at OCL, such as Jay Kline, John O'Brien, Connie Lyle O'Brien, Beth Mount, Michael Kendrick, Kathy Hulgin, Luanna Myer, Gail Jacob, Chris Liuzzo, Guy Caruso, Cheryl MacNeil, Jo Krippenstaple, Karen Berkman, Lynda Kahn and others. We have been very fortunate to have these individuals sometimes come learn with us, sometimes present to us, sometimes work with us through our struggles and sometimes just sit and listen to us. This continual knowledge coming in to OCL is what keeps us alive and gives us the ideas and the energy to keep going.

We have much work still left to do on behalf of the people we support. We have succeeded in personalizing the services but people are still a long ways from having a full life as an integral and respected member of their community. We are also a long way from helping people with a growing number of relationships with others. People we support still have few people in their lives except from staff, housemates and family members. As an organization, we can still get better at being of service to a person versus giving services to a person. Some staff (and even family members) still tends to over protect and not see beyond the hours or relationship that they are involved with a person.

There is also a lot to learn from these two cultures. They are not rushed. They are genuine, sincere and thoughtful people. They have a saying "no worries" and I find that this sums them up nicely. It was almost a culture shock coming back to the US where people are rushed, stressed, rude, self centered, egotistical and have the potential to feel terrorized. There is a lot to learn from taking a deep breath and realizing your own personal tension and working to rid that from yourself and not taking on others problems and dilemmas as though they were your own.

Bibliography of Resources

· To Have a An 'Ordinary' Life, Kia Whai Oranga 'Noa' - Report to the Minister of Health and the Minister of Disability Issues from the National Advisory Committee on Health and Disability, September 2003
· Residential Property Ownership for Disabled Persons - A Guide for Parents and Guardians from a Tax Asset protection Perspective
· People with Disabilities (WA) Inc. Annual Report 2003
· People with Disabilities Advocate Newsletter Feb 2003
· disAbility update - September 2003
· Several forms and policies from Western Australia's Disability Service Commission
· Community Conversations - A collection of writings from CRUcial Times, Vol 2
· Telling the Untold - Families Disability and Institutions Stories of Banned and Unrequited Love
· Relationships and Everyday Lives - People with a Disability and Vital Communities - CRU, 2003
· Finding People to Be There - Rebuilding a sense of belonging, Neil and Penny Barringham, 2002
· A Good Life And Ordinary Life - A Collection of writings from CRUcial Times, Vol. 1

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