Our guest blogger this month is Jill Faber (HSA Canada associate). Jill shares her experience with what happens when people are given a chance to take the lead.

As I sit down to write this blog I'm not sure where to begin or end because the month of March has been a whirlwind.  What happened, what I witnessed - well I needed it. I needed it to be a better trainer, to be a better person.

It was during this whirlwind in March that a staff member approached me and said "This day reminded me my job should really be to work myself out of a job". I was shocked; I've been using this mantra for myself for years, but have never heard someone else say it so freely.

So, let me tell you how what started as a simple project to provide direct learning to people who use services about their rights and responsibilities when planning with agency staff, turned into something more remarkable and beautiful.  This project did put me out of a job- at least for a couple of days.

It started with some listening to my friends who have disabilities. I asked them how to develop a workshop that is seen as neither condescending nor driven by agency intent.  They gave me some very clear and specific instructions:

"Make sure the people with disabilities are in the front of the room". Theresa told me how she was sick and tired of going to conferences or workshops where they were the token people with disabilities. She wanted to go where she could hear from and speak to other people with disabilities, not with support staff and not with family.

"You better tell the truth. I hate planning with my agency and I wish they understood that I am capable of planning on my own". Stephanie was puzzled why I approached her to help me develop a workshop about planning when she had only negative things to say about it. Of course it was for this reason I desperately needed her input. Honesty from the person's perspective had to be a running theme throughout the day.

"You better make it in plain language and you better use pictures to help people understand what you're saying".  Yvonne, who also could be referred to as my final editor, scrutinized and critiqued every PowerPoint slide to ensure the messages were clear and understandable. She is my jargon sheriff.

And so the workshop was developed and then redeveloped. It became the My Life - My Plan Workshop. And though the messages were not new, the delivery and process of learning was. From all the feedback from staff, participants and the self-advocate trainers, the following two decisions, made very early on, had the biggest impact on the positive outcomes for the day.

The workshops were co-facilitated by a person with a disability. There were 10 self-advocates who worked as both table facilitators and some as new trainers.

When I finally realized I needed to step back and let them fully take over, I witnessed how the trainers' energy and leadership washed over the entire group and all the participants were suddenly "in the front of the room".

I have never witnessed a group of people with disabilities become the majority, the only right ones in the room, the ones with all the answers. It was spectacular. It was amazing.

Support staffs were not welcomed at the group tables, nor were they allowed to participate, or contribute in any fashion. Most of the day was done in-group discussions, again led by self-advocates at individual tables. Support staffs were asked at the beginning of the day to remain in the back of the room or at a separate table. They were asked to not support anyone in the room unless requested.

So, when left good enough alone at the tables, I watched as the participants and self-advocates supported each other:  helping each other read, helping each other learn, helping each other share.  What I saw was support that I have so rarely seen. Support absent of any judgment, support with honesty, support with true empathy and true consideration. It's the kind of support we read about in textbooks and those whom we label as needing this kind of support were doing it naturally and easily.

It happened over and over again - the less staff in the room, the more I saw it. Participants eventually stopped turning to the back of the room to their staff and turned to each other. One woman grabbed another woman's puffer and set it up for her, another woman decided she was going to help a man with a visual impairment all day, guiding him through the room and setting up his meal. I could see the amazement on the staff faces - for which I'm sure I had a similar expression.

The remarks from the staff were equally compelling. "I can't believe they're doing this all on their own". "It's so hard to step back, but I can't believe what I'm seeing".

And then there were the conversations. Participants who had never spoken to a group before stood in front of strangers and told their stories. By the end of most sessions almost all the participants willingly stood and spoke out.  It wasn't because I encouraged them - I had nothing to do with it. It was the encouragement and faith from their fellow self-advocates at each table that made them feel they were capable and worthy to speak out.

I finally stepped back.  I gave up my reigns as co-facilitator (I know now anyone who has facilitated with me is having a good laugh - I don't let go of the room easily). They asked it of me. The self-advocates kept saying, "We want to do more. Jill you need to do less". Then it was like watching super heroes reveal themselves. I know this is a silly analogy, but truly it's what I saw. In all my desire to believe in them, they proved they were so much more. I was ashamed of the assumptions I had made and equally delighted for being so so wrong.

So I sat and watched. I sat and listened. I sat…and I sat in the back of the room. I watched them lead, tell stories, take care of the group.  I sat…and watched as they put me out of my job because they asked me to, because I did, because they can.

Note: In Canada "self-advocate" is how some people with disabilities have asked to be referred as when doing work such as described above.

I just love it when I read or hear something that makes me think and reflect.   These last few weeks I have been meeting with parents to explore their thoughts on what it means to them to be part of a supportive community.  These sessions have been very interesting and have helped me do just that - reflect on my beliefs, values and views.

For years, support services agencies have been working hard at changing their language because they realize that words have power and meaning and can hurt others even if unintentional.  Parents of children (or adult children) with disabilities have also been struggling in describing their child's disability and/or support needs in a way that is respectful and celebrates their loved one's differences rather than place a judgment on them.

Sometimes the word 'normal' is used to make distinctions between people who have physical or intellectual abilities and people who might have greater support needs.  I must admit that I cringe every time I hear that word.  I always wonder what is meant by 'normal'.  I don't know two people who are the same and I am glad for this.  Life would be so plain and boring if we were all identical.

Yesterday, during one of my family sessions, a father talked about his son in a way that put a new light on the word 'normal'.   Paul described his son and other people with developmental disabilities or other differences as being normal.  Paul said that 'everyone is normal for their DNA'.   I find this simple statement very powerful and thought provoking.  This morning I read this quote by Albert Einstein:

'Everyone is a genius. But if you judge a fish on its ability to climb a tree, it will live its whole life believing it is stupid.'

I think we need to celebrate people for who they are as unique individuals.  We also need to celebrate ourselves for who we are.  It is great to learn something new or challenge ourselves to grow but it is not okay to do it in order to change our measurement of ourselves in comparison to what some would call 'normal'.  I am not a fish and I don't want or need to learn how to climb a tree to be considered 'normal'.  Who I am is who I am.  I am normal for my DNA.  People with disabilities are also normal for who they are.  Let's celebrate this and focus on what they bring to our world rather than try to teach them to climb a tree.

I have always been a foodie.  I love cooking, eating, watching cooking shows, looking at cookbooks, swapping recipes, browsing kitchen appliance stores and even getting kitchen gadgets at Christmas and my birthday!  Anything food is exciting for me.

Last spring, my husband Gerry and I attended a local fundraiser (yes it was a dinner gala).  A childhood friend was sitting at our table and we started talking about how we both liked cooking and baking.  Dominique said that she always thought that it would be fun to have a dinner club and I jumped at the idea!  Yeah!  A foodie buddy!

A few weeks ago, Gerry and I were the first to host a dinner party and I decided that our theme would be Thai food, my favourite.  I have to admit that I had the greatest time planning it:  searching for new recipes, shopping for food, exploring my town and the city next door for exotic ingredients (well exotic for January in Ontario). I even watched cooking videos on YouTube and dreamed about cooking and eating Thai food.  The dinner was a success.  The food was fabulous - we ate from 7:30 to 10:30 and had the greatest time talking and laughing late into the night

What strikes me the most in all of this is how many new people I connected with while searching for my ingredients and how my energy was different while talking about the dinner I was planning.  One day my mom pointed out how fast I was talking and how excited I seemed.  It had been a while since something had me that excited - and yes,  it was just food and friends but very different than simply having dinner guests.

When facilitating Community Connecting courses, participants often talk about how difficult it is to help people connect and build relationships.  One exploration and planning tool that we work with during the course is the Presence to Contribution tool (click on the image to see how my dinner club experience has impacted my life).   I think that this experience with the dinner club is an example of how uncomplicated we need to keep it.  Starting with common interests and building on these is the best place to start. I am excited about our next dinner club evening.  I hear that the theme is comfort foods.  Yummy!

It seems that these last few weeks, people are getting busy with Holiday Season preparations.  Many people hold family traditions close to their hearts.  This can bring out the best in people and the worse in people.  People don't always agree with their loved ones about traditions including religious practices, decorations, baking, gift exchanges, parties, visiting schedules and getting everything ready.

When people agree about Holiday Season events and customs, it is most likely because they have similarities in terms of what is important to them.  The other explanation is that their priority in terms of what is important to them is their relationships and getting along.

This year November has been and December will be an especially busy time for me, and what is important for me is not to overdo it and burn myself out with the baking, decorating, shopping and visiting.  Listening to my own important for my health priorities has also made me re-examine my own list of what is important to me for the holidays. Instead of making 3 to 4 dozen each of our 8-10 favorite cookie and squares recipes, I will be making only three recipes, one for each of my children and one recipe for my husband.  This year, I will enjoy tourtière (meat pie) at other people's homes and not make my own. I also asked my husband for help with shopping and we've simplified gift exchanges with our extended families.  Decorating my tree with loads of lights and hundreds of ornaments that I have collected over the last 25 years was also always very important to me.  This year, I asked my children to make decisions about where to place the tree and how to decorate it.

The differences this year are that we will have our favourite baking, but not loads so this will definitely be better for our health and waistlines.  My husband was glad to do some of the shopping and we feel like a team this year and we are only exchanging gifts between my children and my brother's children and eliminating the exchange between the adults.

The most valuable lesson I learned is that it is important for me to better listen to others, even when my own priorities are extremely important to me.  In letting go and relaxing about the holidays, my children had more fun decorating the tree and told me that in the past there had always been too many decorations.  The tree is a bit different but just as beautiful.  In talking with my brother and listening more closely to his own priorities for a gift exchange, I have understood better.  He is happier about us focusing on the children and not exchanging between adults.  And I am truly okay with this.  I resisted in the past because I only heard his words (why do we need to do an exchange anyway?) and not the message behind it (children okay, adults not so much).

The Holiday Season will still come whether or not we do things the same way every year and it has been a blessing to do what is important for me instead of what is important to me. I am grateful for the opportunity to listen more deeply and learn more about others.  Season's Greetings everyone!

I hope you are all enjoying the fall weather and getting ready for winter.  I have to admit that I absolutely love the Ontario maple tree colours in fall.  The only thing I don't like about fall is that winter is just around the corner.

In this blog, I would like to introduce you to two new members of our HSA Canada team.  Tammy Ouellette is our new associate in Alberta and Barb Swartz-Biscaro joins me in Ontario.

I met Tammy in 2009 when I first delivered the Person Centred Thinking and Person Centred Teams courses in Alberta.  Tammy works with our very own Katherine Fleming at Centerpoint Facilitation and is a strong advocate of person centred practices.  Tammy provides independent facilitation and has been part of the innovative work being done with people who are homeless or those who are at risk of becoming homeless.  Tammy also provides person centred planning facilitation to older people and people who have a disability.  HSA team members appreciate her attention to detail and analytical skills.

Many of you have already met Barb through our facebook page.  Barb regularly posts her learning and examples from using person centred practices in her own personal life.  Barb leads our work with school in Canada and last year supported teachers in helping 500 students develop One Page Profiles.  Appreciation activities are common place in her family and her children's One Page Profiles and stories have been topics of my past blogs.  Recently, Barb developed a 'mommy profile' and a friend will be hosting an evening with friends where they will be developing their mommy profiles.  Barb is passionate about making a positive difference in people's lives.  Her creative approach to introducing person centred thinking tools in new settings is appreciated by the HSA team.

If you are interested in getting to know Tammy and Barb, have a look at their One Page Profiles on the HSA Canada webpage by clicking the maple leaf to the right.  You can also find Katherine, Jill, Hilary and my own profile on the same page. Have a great Halloween everyone!

Two years ago, an inspiring man by the name of Wayne Mills crossed my path.  In his Personal Profile on his work website, Wayne describes his focus in the following manner:   "Health is a personal matter.  Only by focusing on the person will we transform the unsustainable health system into a sustainable ecosystem.  Changing the provider centred service to Person Centred Health is my passion, vision and commitment".

Wayne's passion in promoting person centred health makes him a strong advocate for the value of personalization in health care system settings and systems.  When our paths first crossed a few years ago, Wayne invited me to participate in webinars focusing not on patient centred health care but on person centred health care.  Wayne is clear about the difference.

At that time, HSA's main work in the health sector focused on the cancer journey and the Think About Your Life website and resources.  It was difficult for us to even imagine the introduction of person centred thinking and tools in places such as large medical hospitals but Wayne planted the seed and we have started sharing our ideas with hospitals.   Two years ago, I never imagined that last week I would be sitting at a nurse's station introducing the idea of One Page Profiles.  Our 'rounds' that day included the Social Work department and six medial units.  One unit wants to implement this as part of their new HELP program that is starting this fall for people who will be staying at the hospital longer term.

I called Wayne today to thank him for his leadership and for inspiring us to see how we can make a contribution to health care.  Wayne said that he plans on sharing our paper Using Person-Centred Practices within Organizations and Teams with hospitals and organizations that also believe in the importance of this (click on the document picture to access this paper).

I look forward to connecting with more Canadian health care providers that share our vision for person centred health services.

Last Friday, Barb Swartz-Biscaro (newest HSA Canada associate) and Erin from Community Living Parry Sound and I, spent the day with 14 young people between the ages of 13 and 19.  Barb facilitated a module from the Coaching Youth for Success program that originated in Australia and Erin facilitated activities to help develop One Page Profiles in the afternoon.

It was my first experience with the Coaching Youth for Success module and I was impressed with how it helps youths think about who they are, what is important to them now and in their future and the supports they need and want to help them accomplish this.  I was also very impressed that so many young people agreed to take time out of their busy summer school break to spend the day with us and help us learn.  The picture above shows Corey, Dominique and Joey looking at red information cards showing examples of different career paths.  Other activities included considering personality types as well as the question 'what drives you?' (picture of Humour example on the right).Young people  said that these exercises were helpful in reflecting on what is important to them.

Mikayla and Cassandra said that they will be sharing their One Page Profiles with their high school teachers when school starts next week.  Mikayla was quite clear that doing boring exercise sheets (i.e. grammar sheets) that are not challenging frustrates her and make it difficult for her to focus or want to participate in class.  She said that the profile will help her talk to her new teachers about her need to be challenged as a way to stay motivated.  Cassandra on the other hand has a way with words and poetry.  She gave me a glimpse of her profile and each section was written as a poem. This was very interesting and very personalized!  Cassandra says that the style of her writing also says a lot about what she likes and how she communicates best.  I look forward to seeing Mikayla and Cassandra's finished profiles and possibly sharing these with you.

Thank you to all the young people who participated and we wish you success in your studies, activities and relationships!

In my small town, it seems that whenever we start hearing of more pregnancies than seems usual, someone always blames it on the water.  Well, could there be something in the water internationally?  There is definite excitement about pregnancies in the International HSA team.  And No! I am not pregnant!  Phew!

Some of you have been following the Personalization in Pregnancy work either on the HSA Facebook or by reading Rowan's blog (Click here to see Rowan's blog).  Well, I got the bug to see it in action and find out first hand what this looks like.  By first hand I mean sitting down with a mom to be … not getting pregnant and finding out directly.  Lol.

Over the last few weeks, I spent a bit of time with Kristen and introduced some of the person centred maternity templates to her.   Kristen was willing to give it a try even though she is in her very last weeks/days of pregnancy.  We first started with a One Page Profile and a few other tools (hopes and fears, past experience, delivery coach job description).

When we met again, Kristen said that it was helpful to think and talk about some of her experiences, wishes and worries.  Even though she had been thinking about some worries and what is working and not working right now, she felt kind of stuck.  Kirsten said that sitting down and putting pen to paper helped her sort out what mattered most and how others can best support her.  It also helped open the door to conversation with her partner.  Small things have already started to change in how they support each other on a day-to-day basis.  They are both benefitting from this. Click on Kristen's One Page Profile image to see the full size pdf version.

Kristen also prepared her birth plan and will be bringing it with her to the hospital to share with the nurses when she is in labour.  She has also talked with her husband about the last experience when their son was born and reviewed the birth coach description with him.  There were no surprises but having it in writing helped them review how he could best support her.

I really enjoyed meeting with Kristen and appreciate her willingness to give it a try this late in her pregnancy.  Thanks Kristen!   I was also really pleased to hear that she found it helpful.  I wish that I had this type of opportunity years ago for each of my pregnancies!

On Wednesday, I presented the Living Well and Planning for the End of Your Life workbook, at a fair for retirees and seniors in my home town. People were moved and inspired by the straight forward questions/tools in the workbook and the opportunity they present to think about personal preferences.  I was moved when one of the participants asked if she could give me a hug as she was leaving the session. These resources really do make a difference!

For me, one of the key questions in the book is "How do I want to be remembered?"  As some of you know, my father passed away in September 2010. Of course through the grieving process, I have gone back and forth between the memories of his last few weeks struggling with pain in the hospital and trying to erase these from memory in an effort to focus on celebrating his life.  My Dad was an avid music lover, player of multiple instruments and singer. This spring, I decided to celebrate his legacy by taking singing lessons as this is definitely not a talent he left me but instead something I wish I could do better. These singing lessons feel like I am spending time with Dad every Monday night. The two songs I have chosen to learn are Angels by Robbie Williams and Cache Cache by Maxime Landry.

• Here is a link to a free Living Well / Thinking and Planning for the End of Your Life download
• This resource has also recently been translated to French.  Here is a link to a free Bien vivre / Réfléchir et planifier pour sa fin de vie download

For a little while now, Helen Sanderson (HSA UK), Amanda George (HSA USA), Deb Watson (HSA Australia) and I have been talking about various ways in which lives are or can be celebrated. I would love to hear readers' own personal examples of how they celebrate the lives of those who have left us. Please share your examples in the comments section or if you are not comfortable doing this, please send me an email @ juliem@hsacanada.ca.

The other key question attached to "How do I want to be remembered?" is "What do you or others need to do to ensure that you are remembered in the way that you choose?" As I was exploring the internet on this topic, I came across an article that talked about dealing with our 'digital assets'. The topic had never occurred to me!  This article describes 7 different programs/services that help organize our information and deal with such things as accounts with facebook, twitter, LinkedIn, chat groups, etc. Some of the programs also provide services that let you prepare a 'Great Goodbye'.  I am thinking that the question of dealing with digital assets probably needs to be asked of someone who is thinking and planning for the end of their life.  Here is a link to the article on the Mashable Social Media website:  http://mashable.com/2010/10/11/social-media-after-death/

Lately I have been thinking about the human need for continuity.  I am sure that most of you have struggled with change at some point in your life.  The experts say that it doesn't matter if the change is positive or negative, it is still hard to adjust.....it can cause stress and leave us with a feeling that our world is out of sink or unbalanced.

Last week, my husband and I decided to cut down a few trees on our property.  We have many trees and the yard started to feel like a jungle.  When my daughter Michelle came home from school, she was devastated and cried about one tree in particular.  She said that it was her tree and that she climbed it sometimes (we have never seen her do this or heard her talk about this) and that she had carved her initials on it.  Michelle then went on to say that everything in her life was changing and talked about the bathroom renovations, relationships at school, and changing bedrooms (even though she asked to change rooms).  We had shaken her world and she was upset.  She asked that we talk to her about any other changes we were planning so that she could have a say in the changes.

This really got me thinking about change, its affect on our sense of feeling safe and secure, and how change can lead to grieving and all the physical and emotional impacts that come with this.   Although we pay attention to grieving after the loss of someone we love, we don't often consider the need to grieve other changes.

While teaching different courses, I often come across the topic of service/program changes and their impact on people who receive extensive services, especially if people rely on services 24 hours per day, 7 days a week.  If Michelle could be 'shaken' by a tree being cut down on the front lawn, what kind of impact do staff turn-over, service changes, home remodelling, down-sizing of living options, changes in house/roommates, etc. have on people?   Some people don't even have their world 'shaken' on an ongoing basis.

Do service providers and person centred planning facilitators know what is important to people in terms of continuity and security?  Do they help them think about transition and the possibility of grieving when things change?  Do they help them think about how they want and need to be supported and do they build those supports with them?

I know that although I have paid attention to this before, I have not done this consistently and maybe not as deeply as possible when I facilitated planning meetings with people.  Michelle's experience helped me realize the importance of this.  I think that for people who have more difficulty understanding why things change and might not be able to tell us directly what matters most to them, it is even more crucial that we pay close attention to this and figure it out with the person.