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Next in 1987 due the success of job placement they closed down the sheltered work shop

In 1989 they closed down the day program and opend a new service called Community Living Services.

In 1996 they ended all centre based services and provided personalised community based day supports in people's homes and the community.

This process took ten years and it wasn't easy, they had resistence but they also had principles and values that they stuck to and used to make decisions. Once the individual arrangements were in place not one service user wanted to go back into group. They would rather stay at home than go back into a group. Once they were out you could not get them back in.

They believe that to truly individualise you need to do the whole life and not pockets of it. They belive that independent living in a home of your own, either rented or purchased is better than living at home with parents or foster homes. The people lives are, once again, ordinary lives just like any body elses life. They get bored, excited, pay rent, hold down all kinds of social roles, paid work, volunteer work, hang out and all of the other things that people do.

Millinocket does not have much by way of community resourses or recreational opportunities, it has been hit hard by the GFC and the mill closed down last month. They do have a bowling alley. Some people go bowling. But they join a team. Most people dont go bowling. Most people are too busy to bowl or they just dont want to.

Some people live together because they wanted to because they had authentic friendships. Some people live by themselves. All living arrangements have staff to help them live in their home, some have 24 hr and some have 5 hrs. It varies depending on the person. They have 11 people who own their own home. They are excellent neighbours and sort after tenants.


I met Barb and Dorothy and we partied for an hour. They are both in their late 50s and didn't understand a word I said.
I met Corry and Jody and Corry showed me many times his DJíng skills, or how his CD player, radio, keyboard, tv, remote, camera, big stereo, little stereo, Wee (not sure of the spelling here. It's that computer game thing pronounced Wee) and told me about them as well. Corry doesn't speak much in a month let alone in an hour but we had a great time together. Corry owns and runs a recycling business. The recyclers wouldn't hire him so he set up his own business and has made enough money to go on holidays to Florida, buy two paddle boats (not sure what they are) numerous stereo's, key boards, computer games and a whole pile of other stuuf. He needs support to pick up the material, sort it (he absolutely lives to sort stuff) and drop it off at the recyclers. The community love him because they dont have to sort the recycling. Here you have tyo sort it into plastics, paper, carboard etc. Thats what Corry does and thats why they use him and thats why he can by so much stuff and go on holidays. He needs a driver because he would cash the car.

An amazing agency supportiing people to live ordinary lives. People going through extraordinary things to live ordinary lives. Right here in Millinocket. Have a look at it on the map.]]> Stephen Stephen Visits America Fri, 20 May 2011 06:52:46 +1000 http://www.milparinka.org.au/phorum/read.php?1,25,25#msg-25 http://www.milparinka.org.au/phorum/read.php?1,25,25#msg-25
I met some amazing people who had been on an extrordinary journey to do ordinary things. Like work, live where and who they want to live with, have freinds, make decisions, pay rent, mortage, invite some one over for dinner, get depressed, be happy, have a BBQ (cook out), talk to other fans about sports, hang out a shop, get bored, argue and so on. Get the picture? Some of these people had significant barriers and issues to work through to get where they are. All of those issues have gone because they were listened to, got their individual needs met and got valued roles.

Common Ground are very organic with their approach and thinking. They work in a natural, individualised way. This is also some thing I have seen in other agencies: natural, organic, mature and fluid thinking. Sounds a bit hippy and believe me I have thought long and hard to find better words than those but I cant. They fit. It was a terrific visit and I learnt a lot. Last but not least is Millinocket in Maine where Katahdin Friends, Inc are located.]]> Stephen Stephen Visits America Tue, 17 May 2011 09:53:06 +1000 http://www.milparinka.org.au/phorum/read.php?1,24,24#msg-24 http://www.milparinka.org.au/phorum/read.php?1,24,24#msg-24 Stephen Stephen Visits America Wed, 11 May 2011 10:54:18 +1000 http://www.milparinka.org.au/phorum/read.php?1,23,23#msg-23 http://www.milparinka.org.au/phorum/read.php?1,23,23#msg-23
That aside Toronto is just a fantastic place. Lot bigger than I thought and Lake Ontario is enormous. I spent Friday with Janet Klees from Deohaeko. Strted with breakfast then I sat in on a vlaues group that has been set up to write a policy that the goverment has asked for. Interesting group. This was a good example of a small focused and experienced group working together. Very person centred and not service centred. They dont talk about services and clients they talk about what the person needs and how to go about getting it the same way you would for any body.

I met Brenda and Tiffany. I'm having morning tea with Brenda today (Monday) and I'll be meeting people today and tomorrow. I'll add to the blog at the end. I also sat in on some planning training that Janet is running for parenst, board members, staff and other people from other orgs. It is being run for one year one Saturday per month. Very good session and at the end of this all of those people will know the basic process of how people get together and figure out what the person wants.

I had a fantastic Saturday afternoon with Janet and her husband Harry. After the planning traning we had lunch, went for a walk in the distillery area, had coffee, a butter buscuit (I think thats what its called), went to some galleries, went for a walk aslong the beaches ,where there are lots of beaches, had dinner and a beer out doors and then back to Janets pl;ace for coffee and a chat. Lovely day. Big week coming up. Lots of driving.]]> Stephen Stephen Visits America Mon, 09 May 2011 22:44:44 +1000 http://www.milparinka.org.au/phorum/read.php?1,22,22#msg-22 http://www.milparinka.org.au/phorum/read.php?1,22,22#msg-22
So they had none of these things in place. They built them. Another person was asked and guess what? They wanted out, a job, do something meaning full etc. Each person they asked basically wanted to get out of the group home and get on with life. Each person had a different idea of how this looked so it all became very individualised, clear, focused, clean and sustained. This wasn't easy but it started with listening to what the person wanted and then going about setting up structures that can access the money to pay for the support that the person needed. They looked at the person and the income they had and went about getting every benifit that a person on that income was entitled to and they got lots of stuff that they would not have got if they just went down the disability track.

Met some fantastic people like Ben, I'm posting over his book. He has a furniture making business. Mike is an amazing man with an amazing story. He's been working a paid job in a supermarket for 18 years. His was on a completely different track and was not headed for living in a house with a house mate, paid job, seeing bands etc. He was headed to not a nice place. I met Debbgie and her mother Cheryl. Debbie owns her own home as do a lot of people receiving support from the agency. Debbie owns her own home, has got a car which is wheel chair accessible and goes to a day program. Amazing person and so is Cheryl.

OCL have a very sophisticated way of thinking about individuals. Their thinking is organic, natural, sophisticated, deep and completely individualised. What ever comes into that agency gets individualised. They are so good at it and have been doing it so long that it is the natural way of thinking. The house mate arrangements work a treat. They are clear up front with the potential house mate that this is all about the person and not you. The house mate lives rent free and is expected to provide some support in the home. It is to be a natural relationship and not a staff client relationship. The house mate is not staff they are a house mate that has been invited to share some accommodation rent free. OCL have been able to tailor make their advertisements in the local paper so they attract the right person. It works. They now know if some one is the right fit.

Any way I'm rambling again. I'm off to Canada today to see Janet Klees from Deohaeko. All the best and have a nice day.

Stephen]]> Stephen Stephen Visits America Thu, 05 May 2011 23:29:35 +1000 http://www.milparinka.org.au/phorum/read.php?1,21,21#msg-21 http://www.milparinka.org.au/phorum/read.php?1,21,21#msg-21
Went to a place called Ithica which is sort of the main town at Finger Lakes. Started my adventure there where I saw some real fair dunkum American street marching. Ithica is a university town and I was the oldest person there. The Ithica Democratic Socialists of America did some dancing in the street, street matching and then 1 hour later I found them sitting cross legged in a park playing "lovely" flute music. It wasn't lovely but it was good to see some American /Democracy. Wonder if the FBI and CIA were taking photos s well.

I was told oo some water falls were about a 10 minute walk from where I had lunch so I walked there. I couldn't understand why all of the people were there. Turns out it was a rubber duck race and they launched about 100 rubber ducks down these beautiful water falls. Beatitul country. If this is a taste of what is to come I am looking forward to it very much.

Ithica was a beautiful place. All of the Magnolia trees are blooming and they are blooming magnificent. Houses and building are just amazing. Found my hat. All good and I'm of to work tomorrow. Be ineteresting to see Ononadaga. It was set up in the 80s by a staff memeber from ARC. The staff moved to Syracuse and opened up a new agency.

See ya

Stephen]]> Stephen Stephen Visits America Mon, 02 May 2011 08:40:47 +1000 http://www.milparinka.org.au/phorum/read.php?1,20,20#msg-20 http://www.milparinka.org.au/phorum/read.php?1,20,20#msg-20
New York has a very complex, convoluted, complicated, highly bureaucratic funding arrangements. Virtually no flexibility, very invasive and merciless. This has not stopped them individualising it has just meant they really needed to set up robust yet flexible internal systems and structures which they have done and are continuing to do. Their main focus is on Right Relationship, Social Role Valorisation, Person Centred Planning (nothing like what we have seen here) and models and theories. The models and theories help them to address and talk about issues, problem solve and think. Every single person in the organisation from the cleaner to every single member of the board gets Right relationship and SRV training. If the person lives at home with mum and dad in self directed supports mum and dad get the same training as well. This explains the kinds of conversations I was having. They all talked about people, values, roles, what makes sense, reciprical relationships, relationships and hardly ever mentioned programs.

They consider them selves to be a "High Touch Relationship Oriented"organisation. They want to work with the family and the person in a collaborative way. They want to have a the right relationship with the person and the family. They are definately not just a admin system to put through time sheets. It works. They have good sound, long term, robust, healthy individual arrangements around people. They do it one person at a time.

I met lots of people including (not their real names) Lenny, Bob & Dan, Paul, Bob and Jeff. They all had long term individualised lives with self directed supports. The support arrangements included paid neighbours, live in paid staff, natural supports (not a lot of these) and paid staff who lived near by. Each person had a story to tell. For example Bob and Jeff's story starts with Bob sitting down with peole who he knows and trusts and working out what he wanted in a home. Bob can be very difficult to understand so the people around him needed to know him well. Bob wanted a home with a dog, on land, in the bush and with people in it. Jeff who works for ARC and had worked with Bob and had been reading about live in support and liked the sound of it. He saw how Bob's ideal home would look and it matched Jeff's ideal as well. So they talked, worked every thing out and found a person who had a house in the bush, on land and with 2 dogs. Turned out Bob didn't want the dog he just wanted a dog there. It also turned out that this ideal home was a real place that Bob used to visit as a child. It had a great impact on him. So much that he has re-created it as his ideal home. Bob, Jeff and Mandy all share a house now. They have sperate but interconnetcd lives based on right relationship. It was a learning experience for all people as they all had to learn how to be in reciprical, respectful and equal relationships. There are other stories but this is the second time I have written this. Long story about pressing "back space"and then losing the whole document.

I'm in Sycracuse now, it's Saturday morning, I'm sharing the hotel with a bowlers convention, mothers of twins convention and some kind of boy scout group. I'm off to Niagra Falls. See ya



Stephen]]> Stephen Stephen Visits America Sat, 30 Apr 2011 23:49:39 +1000 http://www.milparinka.org.au/phorum/read.php?1,19,19#msg-19 http://www.milparinka.org.au/phorum/read.php?1,19,19#msg-19
On Saturday morning about 15 ks from where I am staying it snowed. On Saturday it rained all day and I spent the day in a t shirt because it wasn't that cold. Changes like that are common this time of the year. Easter lunch was in Northhampton which is just a beatuful place. I could spend a week just walking the streets. Great time, great place and great people. Off to Troy tomorrow. Hope all is good there.]]> Stephen Stephen Visits America Tue, 26 Apr 2011 06:51:40 +1000 http://www.milparinka.org.au/phorum/read.php?1,18,18#msg-18 http://www.milparinka.org.au/phorum/read.php?1,18,18#msg-18
Polus focus on the relationship of the person and the provider and even though the provider receives at least $1800 per month plus a 75% of the person pension they are not considered employees and are not treated as such. They are a family that has decided they would like to have a person with a disability live with them. They soon become part of the family. They have provider relationships that are 20+ years and the person goes on holidays with them and basically shares their life with them.

Many years ago Michael Lindquist (who was in the Middle East when I got there) said that he wants the organisation to be financially viable but to still maintain the quality that they have a reputation for. In order to do this they needed to remain small, they have 50 service users, while increasing the funding. They also did not want to receive 100% of their funding from one source. They achieved this by seeking funding elsewhere. They asked themselves “Where else are people marginalised and disenfranchised and who we can work with so they can get the best life possible”.

Land mine victims were identified as a group of people who answered this question. They started off by providing second hand prosthetic limbs. US legislation states that a prosthetic limb can only be used by the person it was made for. So as a person grows out of a limb or they die or they no longer have a need for one for whatever reason it gets discarded. There is no such legislation in the South American countries that Polus work with so Polus sent them to land mine victims. Polus now receive significant funding and grants to work with land mine victims in South America. The funding comes from the UN, private donations, governments etc. They employ local people to look for ideas and initiatives that Polus can fund through the grants they receive.

For instance the employee may have a conversation with someone who has a friend or relative with a prosthetic limb who used to work on the coffee plantations but lost their leg to a land mine. During the conversation it is stated that they believe the person with the prosthetic limb may be able to work with a sewing machine. The local employee will check it all out and if it checks out, propose that this gets funded and Polus will buy the sewing machine and other things that the employee may recommend. At the end of it the person with the prosthetic limb is a tailor and has a tailoring business.

This program brings with it very significant funding. It enables Polus to provide high quality service, be creative, innovative and be a leader in their field. All they do is work with people so they can get the best life possible.

After lunch I met Tom a program director and Kevin. Below is Kevin’s story. Kevin is not his real name.

Kevin turned 65 and then announced that he was going to retire. He would not be going back to the day centre. What was he going to do now and why had he suddenly announced his retirement? Kevin had been wrongly placed in a day centre for close to a decade. He is bright, articulate, great sense of humour, a movie buff and had always had a passion for art. The day centre crushed all of this. The staff was caring and the management professional and supportive. Kevin was just wrongly placed. Those around him at the centre had significant disabilities and could not talk to Kevin and they would at times sit in their wheel chairs yelling and screaming when they got upset. Kevin found this unbearable. He could chat with the staff and the staff gave him the time when they could. Kevin had made his decision to retire and he did.

Trouble is, Kevin had been idle for a long, long time and retirement meant that he would now be active. But doing what? Kevin’s mother was an artist and an art professor. When Kevin and Tom, his Polus worker, were driving to the day centre for Kevin’s exit interview, Kevin said that his mother was an artist and her art was her legacy to him. He now wants to make his art his legacy. He was going to take up art again. He used to do art many, many years ago. So he got himself an easel, some art supplies and now he and Tom are looking at Kevin taking some classes at the local gallery.

Three days per week Kevin stays at home and draws, watches his movies, sleeps in, lays about, relaxes and hangs out. The other two days per week he goes to a senior citizens day centre where he is referred to as “The new young fellow”. Kevin thinks this is fantastic. He can sit at a table with a bunch of other blokes his own age and talk, chat, drink coffee, get grumpy, laugh, smile, draw and share their experiences. Kevin has medical issues that require access to medical professionals and this is available at the seniors day centre. His providers support his medical issues at home.

At the day centre Kevin was in a wheel chair and at times (rarely) used a walking frame. When he retired he decided he was going to walk with just a stick. With support from rehab at the senior’s day centre and his own determination he now walks with just a stick. His providers at home have noticed an incredible change in Kevin. He talks more, is beginning to do some house hold chores and is saying and thinking new things. All this happened over 6 weeks. Incredible. Kevin now wants to teach kids with disabilities how to do art and I have no doubt he will be doing this. He has it all worked out.
Retirement is absolutely fantastic for Kevin. He said that he is in a good place now and he wasn’t only referring to the seniors day centre.

Tom has been working with a new person to try and see what the best life possible can be for him. I will refer to him as Roger and the names of the places have been changed.

Roger is 75 and grew up in El-Salvadore. He has significant mental health problems and intellectual disability. His family did not know how to care for him or make him safe. His behaviours placed him and others in dangerous situations. So Roger was locked up in his room and was provided with food. At least he and others were safe. After some time Roger moved to Detroit with his brother and then to Providence where Roger was placed in an institution in a rural area with acres and acres of land. He stayed there for 20+ years. He was given 75 cents per day to buy a coke and if he was lucky he could ask other residents if they would lend him some money. Roger only spoke and understood Spanish. Virtually no one else there spoke Spanish except the ocasional staff member. His life for 20 years was extremely institutionalised and going no where.

Roger was referred to Polus Centre and Tom was told to work with him, to start planning. It is believed that the biggest challenge Roger will face will be decision making. They were all made for him. Once he is in a providers home he will need to make decisions. Now the coke is in the fridge and you can just get it and drink it. This is completely foreign to Roger. All his adult life you got coke out of the machine for 75 cents. They are going to limit the number of cans in the fridge to two. He may open the fridge and see six cans of coke and drink them all. He will have to get used to living in a community, showering when he wants to, eating what he wants when he wants, walking around the community, shopping, basically living a life.

The best life possible for Roger includes living with a Spanish speaking Catholic family and close to his niece. Fortunately Tom lives in the same area that the niece does and he has close contacts with the local Catholic Church. Tom through his own network was able to locate and vet a local Spanish speaking catholic family who would love to have Roger live with them.

Polus got this right and they get the matching right through thinking, planning, thinking and then only taking action when they are certain that they have the best set of arrangements in place that will offer the person the best opportunity to have the best life possible. It works.]]> Stephen Stephen Visits America Fri, 22 Apr 2011 06:24:13 +1000 http://www.milparinka.org.au/phorum/read.php?1,17,17#msg-17 http://www.milparinka.org.au/phorum/read.php?1,17,17#msg-17 Stephen Stephen Visits America Fri, 22 Apr 2011 06:12:50 +1000 http://www.milparinka.org.au/phorum/read.php?1,16,16#msg-16 http://www.milparinka.org.au/phorum/read.php?1,16,16#msg-16
See ya

Stephen]]> Stephen Stephen Visits America Tue, 19 Apr 2011 23:34:52 +1000 http://www.milparinka.org.au/phorum/read.php?1,15,15#msg-15 http://www.milparinka.org.au/phorum/read.php?1,15,15#msg-15
Jay Nolan Community Services is located in Los Angeles California. It was founded in 1976 to develop accommodation options for people with Autism. This took the form of 2 group homes being established and the establishment of a day service in one of the garages. From then until 1992 It developed into a service which provided employment/day programs, housing, family services and behavioural support. All within group structures.

An external evaluation was undertaken due to concerns around financial viability. The evaluation identified that the organisation was in financial crisis, people were not happy, even though staff were caring the services were not good enough. In 1993 Jeff Strully was appointed as the CEO with a focus on creating opportunities for people to have better lives and financial viability.

This commenced the journey towards individualised services. The closing of 13 group homes and the establishment of individualised living arrangements was done in collaboration with the state funding body. This journey progressed into individualised life styles, employment services and family support.

What worked for them?
• Established and a committment to organisational values, philosophy, beliefs and the pinciples of socail
justice.
• Family leadership: Two families with an adult son or daughter who had significant needs took up the opportunity to have a better life. This success created stories and people took notice.
• Each individual receiving a service has a Circle of support.
• A detailed knowledge of the service system. They knew precicely what to say to whom.
• Building allies within the funding body.
• Negotiation with the funding body arround relaxing regulations such as staff client ratios.
• Permitted themselves to make mistakes.
• Having and investing in the right people.
Jay Nolan have no cars, no centres and several satelite offices. The service users of Jay Nolan were always individually funded. They just decided to do some thing better with it. We met some amazing people who use Jay Nolan. Nick who walks dogs and has an interest in music, owns a vending machine business. Martin who has held a paid position in a suprmarket for about 8 years a long term girlfriend, on an advocacy bcommittee and is a meeter and greeter at his local church. Mitch up until 2003 Mitch lived in a group home. He has Autism, significant communication issues, difficulty handling social situations and numerous idicentric behaviours. Mitch wasn’t doing much.

Mitch now lives in a home of his own with a room mate, he has part time paid employment at a pet shop, an effective means of communication, spontinaiety in his life and has developed a real interest in museums, gardens and the arts.

Stephen and Caudia]]> Stephen Stephen Visits America Mon, 18 Apr 2011 02:44:36 +1000 http://www.milparinka.org.au/phorum/read.php?1,14,14#msg-14 http://www.milparinka.org.au/phorum/read.php?1,14,14#msg-14
Stephen will be visiting disability services that were recommended by Michael Kendrick and others as good examples of organizations that have successfully and sustainably provided individualised services to people with disabilities for the last 25 years . They provide a service to one person at a time. Stephen will be looking at the how, why, when, where, who and every thing in between that is relevant to successfully and sustainably providing individualised and personalised services. His starting points will be

• What is good?
• How do you spread it?
• How do you sustain it?

This information will then influence Milparinka’s continued reorientation towards successful and sustainable individualised service provision. Stephen is visiting the following 8 agencies in 5 weeks from Wednesday 13/4/2011 until Friday 20/5/2011. He will be speaking to service users, families, management, staff and community members from, and connected to, the following agencies:

• Jay Nolan
• Polus [www.poluscenter.org]
• Multicultural Community Services [www.mcsnet.org]
• Arc of Rensselaer [www.rensselaerarc.org]
• Onondaga [www.oclinc.org]
• Deohaeko [deohaeko.com]
• Common Ground [commongroundnhs.net]
• Katahdin. [www.kfimaine.org]


Also, Claudia Veneris, who will be on holidays in America at the same time as Stephen is there will be adding a couple of days on to these to spend time with Stephen and Jeff Strully at the Jay Nolan Centre which is reknown for its support of individualsied lifestyles.

Many families and others have had a chance to let Stephen know what it is they would like him to find out during his visit. If you have any things you may like him to ask or things you may want him to look out for let him know through the blog or email him on Stephen.Whan@milparinka.org.au. What do you want him to tell you when he gets back?

While he is away Stephen will be posting blogs on this site to let us know some of the things he has seen and heard about.

Frank Crupi]]> admin Stephen Visits America Mon, 04 Apr 2011 19:48:59 +1000