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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
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 @ email@example.com.
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
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.
Recently during a Person Centred Review course, one young mom
volunteered to be the focus person during the Person Practice
Review and the experience was amazingly powerful for everyone. This
young mom talked about her struggles with balancing her time in
terms of taking care of her baby, her home and working two jobs.
She and her co-workers identified this as a priority to sort out
during the Review. Together we explored options using the
blueskying technique and came up with a number of ideas to start
with. By the end of the Review, this young mom's plan was to go
home and develop a One Page Profile for herself and sharing this
with her husband and family. She also planned on sorting out
daycare support so that she could build in an hour of 'me time' at
the end of her work day. This mom was known to some of the
participants as being so generous to others that she would almost
never say 'no' to requests for help. One of the blueskying ideas
was to learn how to stop and assess if she had the time or energy
to say 'yes' to requests and be more selective with sharing her
time. She told the group that she had never really thought of
saying 'no' as being an option. It was a real 'Aha! Moment' for
During the closing round of the Person Centred Review course,
many participants voiced their plans of going back and asking their
partners and children to develop One Page Profiles with them. A
number of these participants thought that other tools such as
Communication Charts would be helpful to do as couples. Some
participants had read the Celebrating Families book and were energized to
go home and explore the book again with a desire to strengthen
their relationships with their partners and family members. Others
were excited to hear about this resource.
I have not often heard of couples using Person Centred Thinking
tools as a way to sort out how to honour what matters most to them
as individuals and as a couple, and how to support each other
through the ups and downs of their relationship. I would love to
hear about stories or see examples from our readers. Please send me
your thoughts and examples at firstname.lastname@example.org.
I would like to start by welcoming Hilary
Tugwood to our team. Hilary has extensive experience in
promoting and helping organizations implement person centred
supports. Hilary is passionate about making a difference in
people's lives. Her insight, vision and wealth of knowledge
will be evident to organizations, as she supports them on their
journey to becoming more person centred in all their efforts.
During a mentorship session with Person Centred Thinking trainer
candidates this week, Hilary led a discussion on the topics of
respect and rights. Although respect and the exercise of
choice and control (rights) are inherent in all that we teach and
promote, we feel that it is further important to start talking
about rights and respect more directly in training. I am
excited to work with Hilary to look at finding ways to incorporate
new curriculum on these core values.
This month, I also had the opportunity to work with
two groups of nurses at my local general hospital. Both
groups worked on developing One Page Profiles with the aim of team
building. Both groups were impressed at the helpfulness of
One Page Profiles in identifying how to support each other,
especially when a new nurse joins the team. Both teams used
the 4+1 reflection and action planning tool to problem solve two
separate concerns. I was
also really excited to learn that some families had developed
One Page Profiles for their loved-ones who have been long term
patients at the hospital. The nurses said that these were
very helpful in providing more individualized care. I
look forward to meeting with the nursing managers next month to
look at how they can further implement and use the person centred
thinking tools that they learned during these sessions.
If you are interested in helping us explore and develop any of
these exciting topics (rights, respect and person centred thinking
in health), please connect with me at email@example.com
Well, I am excited to share an example of how One Page Profiles
were contagious. The funny thing is that this spread of One Page
Profile use happened in a Hospital Intensive Care Unit. Kris
Akilie, from the Niagara region, learned about One Page Profiles as
part of training that took place in her area last year. Kris'
mother, age 84, needed intensive medical supports this year and was
hospitalized for four months. During this time, she lost her
ability to talk.
Kris asked her family to help her develop a One Page Profile for
their mom. As well as support information, the profile included
details about things that matter to her and what brings her
comfort. On the very first day, a nurse noticed that Laurie enjoyed
watching The Big Bang Theory on television (it was also the nurse's
favourite show). The nurse told her she would come back and put it
on for her (and she did). These types of small supports made a big
difference in Laurie's healing and stay at the hospital.
After four months, Laurie was well enough to leave the hospital.
What amazed Kris the most is that creating a One Page Profile for
her mum, 'gave the bug' to 10 other families, to do the same with
their loved ones. These families did not attend a course or read a
book, they saw Laurie's profile and how it helped the nursing staff
provide more personalized care, and were inspired to do the
I hope that we can all be contagious like Kris, simply by using
person centred approaches in our everyday life. We can all make a
difference, simply by letting people see what we are doing and the
difference it can make in our lives.
I would love to hear your stories. Please share them by leaving
a comment here or by adding a post on our facebook page.
I hope that 2012 started off well and will be inspiring for
What seems to inspire me the most is when I hear stories of how
Person Centred Thinking and Planning is being used in new ways, for
new purposes and is making a positive difference in people's lives.
It is especially exciting to see people's creativity and how these
new ideas can be useful in my own life and my family's life.
Right before the
holidays, Barb Swartz from Ontario told me about her new
partnership with her local employment service. Based on her
visioning work with a grade 8 class last June
(click here to see the session outline),this year they will be
doing Opportunities and Visioning sessions with all grade 8 classes
in their area. This work will take place from January to June
of this year, which means that all students entering Parry Sound
High School in September 2012 will do so with a One Page Profile
and visioning board...How exciting!
Jordan developed a One Page Profile for High
School using her vision board and information that she captured
during the exercises (click
here to see the pdf version).
Starting high school can be intimidating for any student.
Having an opportunity to think about hopes and fears and plan on
how to cope with difficult situations can help them stay on their
desired path to success. I am inspired by Barb's session and
upcoming project with the employment service. We will work together
to capture the experience and look at pulling it together so that
others will be able to do this in their own area. I hope you are
all as inspired as I am!
It's been a
while since I've blogged and I'm happy to join you again to close
off 2011 and bring in the New Year. I'd like to start by thanking
Katherine and Jill for sharing their wonderful insights and
personal stories with everyone these last few months. I hope that
you've enjoyed reading their blogs as much as I have.
This time of year, much of our energy is spent on celebrating
and indulging in festivities that are specific to each of our own
personal cultures. For years now, I have encouraged support
providers to ask people what is important to them in terms of
celebrating the Holiday Season (or not), and to help them find a
way to do this with their families, friends, neighbours and also
take advantage of community celebrations.
When people rely mostly on paid support for day to day care, to
connect with friends and family and to access their community, they
also depend on these same service providers to help them celebrate
or observe cultural Holiday practices. Providing this type of
support is not always easy for the service provider and can take a
lot of figuring out.
Since my childhood, I have been fascinated by discussions of how
Holidays should be celebrated. Of course my way is the only right
way (not really), but it is the only right way for me. I do care
that what matters most to me in terms of celebrating is part of my
celebration every year.
For me, being a French
Canadian who was also raised Catholic, this particular Holiday
Season means that we celebrate by going to church December
24th for Christmas Eve mass. When I was young, midnight
mass was actually at midnight (now we have the option of going to
'midnight' mass as early as 5pm - not the same but quite nice for
my not so young body). In my young days, after church we gathered
for a réveillon de noël. A réveillon is a party that lasts
all night and involves eating loads of hot food including the
traditional tourtière (meat pie), and singing des
chansons à répondre (a unique type of sing-a-long). This is
also when we opened our Christmas gifts.
Christmas still involves most of these French Canadian family
traditions but sometimes they look a little different, which is
okay with me because I'm part of making the decisions about how we
modify our activities. Things that are most important to me, like
baking, will never change because to me it wouldn't be Christmas
without making batches of our favourite family recipes.
As you can
probably imagine, supporting me during this Holiday Season would
probably take lots of planning and creativity if I had to rely on
paid supports to make it all happen. I do have to say that I don't
think it would be much of a Christmas celebration without all my
family traditions. Luckily, I have family members who also enjoy
some of the same traditions and we take turns making bits and
pieces of it happen. Together, we are bigger than the sum of our
parts. It is much easier and a lot more fun, to come together to
make it happen.
The best Christmas stories I've heard, are those where support
providers have been able to learn what matters most to people and
their loved ones, in terms of celebrating and observing cultural
and family traditions and have worked together with them to make it
happen. Not only did the person and their family appreciate the
personalized support, but support workers were proud of the
difference they made.
Thanks to all of you who take this extra care in providing
person centred supports! It's not always easy but it sure is fun to
see the difference it makes in someone's life.
I look forward to sharing my January blog where I share the
inspiring work that Barb Swartz-Biscaro has done with a grade 8
class to help them prepare for secondary school.
Happy New Year everyone!
This months blog from HSA Canada comes from Jill Faber.
As promised from my blog in October, I want to share what I have
tried and learned in helping organizations strategically plan for
group homes and accommodation services.
Though my heart rests with the belief that every single person
has the right to their own home, as they define and with the people
they want… the reality is that accommodation services are still
plentiful. Why not make them better now..?
By using person centred strategic planning methods,
organizations can not only improve their present services, but can
plan for the future based on what the people who use their services
are telling them. They can plan for a more person centred future.
Sometimes that distance from what is to what
needs to be seems overwhelming. I believe this
kind of planning is the "bridge" organizations need.
By having a strategic plan, the re-distribution of resources can
be done over time and all with a clear and stated vision in mind,
with real information directing and prioritizing the journey.
The strategic process that I've been using is by no means
revolutionary. It merely uses what we already know about person
centered thinking and blends it with common elements found in every
strategic planning method.
Some of what I have used in this process was taken directly
From Individual to Strategic Change: Driving Change With
Person Centred Information
Helen Sanderson and Max Neill
With Gill Bailey, Helen Smith, Lorraine Erwin, Alison Short and
--Thanks for the guidance and inspiration!
There are 7 steps in the strategic planning process:
At the beginning of a strategic planning process it is essential
that the strategic decision makers come together to clarify exactly
what information they want and how they will use this to inform
1. What information do we want to gather from
2. Who are the people?
3. How will we gather the information?
a. What tools will be used?
b. Who will gather the information?
c. How will we manage the logistics of the
4. Who needs to be at the Strategic Planning
a. Who needs to be looking at this information
to be able to use it to inform strategic decisions?
b. Who else would find this helpful?
3.Transfer the information into a useable
Some organizations may wish to use their own survey or
information gathering tool.
This, in combination with person centred tools becomes a highly
effective way of gathering the needed information.
The One Page Profile for home became the "useable format" in
order to think and plan how people wanted to live now and in their
Depending on the mere amount of information and size of the
accommodation services, the actual strategic planning sessions
could range from 2-4 days.
Here is a meeting map of my last session in Hamilton, Ontario,
You can't have strategic planning without the development of
Usually action plans are developed in tandem for three
1- The person and their support network-
Strategic planning can bring up more questions than answers
sometimes. Therefore the first steps are to go back and ask further
questions from the people and their supports. Checking in to see if
we've got it right, share what was learned and involve people in
the next steps.
2- Teams- Good planning will bring issues of
support to light that require change. Teams leave with a plan of
how they can make the lives better for the people they are
supporting right now.
3-The Strategic Plan- This is the culmination
of all the group work and blue sky thinking that happens over the
two days. I encourage people to think about the immediate and the
long term. In addition, building the evaluation of progress right
into the strategic plan will ensure it happens.
If you want more information on my strategic planning adventures
and what I have learned, please contact me directly, firstname.lastname@example.org
"The ache for home lives in all of us, the safe place where
we can go as we are and not be questioned" Maya
I have spent the good part
of my life in the homes of others. No, I'm not a squatter or a
couch surfer. I have merely spent the good part of my adult life
working in group homes created for people with disabilities.
Group homes in theory should be the way of the past but a large
section of people with disabilities continue to live this way. Many
organisations primary funding is for residential accommodations
that include group homes.
Through the years, I've met so many people living in group homes
that were desperately unhappy about their "living situation" or
"accommodation". I use these terms because thaese have been coined
to steer us from the reality of what people actually want - that
being a home, not an "accommodation".
At one point, many years ago, in my role as manager of several
group homes, I realised that we could do better for people with
their homes if we started to really listen to what they were trying
to tell us.
What I knew that was that there had never been any strategic
planning done in my agency to make positive changes for people
concerning where they live. Planning was only done in terms of
vacancies or crisis or when the government bestowed some money.
New group homes would be chosen because the senior managers
thought they were pretty more than functional and they would show
them off like they personally owned them. Locations of the homes,
at least in my city, was determined by the city because of the
archaic and discriminatory by-laws concerning where group homes
could be located.
But the worst injustic was how people were "grouped" together.
The reasons I have heard over the years of "why" people should live
together are plentiful, but shy of any real input from the people
And then there were all the people that were suped into
believing they should move from one group home to another, because
"we" wanted the "spot" for another person. Only to criticise the
person who moved months later for being unhappy in the their
People like to describe this time when a person moves into a new
group home as the "honeymoon" phase. I personally dislike this
term, as I think it gives permission to ignore what people are
trying to tell us when they are unhappy. I have recoined the term
to "hope" phase. When people "hope" their new home will be better
and show this by wanting to fit in, wanting to feel safe, wanting
to feel at home. When these are not fulfilled or validated, hope
falls away and people start telling us they are unhappy.
Many of my co-workers were skeptical when I
proposed person centred strategic planning for the group liiving
program. It would gives us an indication of how and where people
actually want to live, by which we could make plans accordingly.
"Would it really be person centred?" "You are going to get people's
hopes and dreams up"
Others claimed, "Nothing can be done, this is the way it has
always been". I was told that the people living in the group homes
were basically prisoners of their own circumstance.
I believed the only circumstance that people were imprisoned by
was that which we had created. I knew we could do better.
So I started my journey in developing a process that involves
listening and learning from people about their home life and using
this to inform strategic changes in group living programs as a
Next month, our blog will describe this strategic planning
process and Helping People Plan for Home.
This month's blog comes from Katherine Fleming of HSA
"I don't know what I would do if I was given more time to live.
I don't think I would be able to handle it. I don't know what I
would do". I think of these words often, words spoken by my sister
in law, Virginia, at our usual Sunday suppertime gathering of the
just been reflecting on impossible to imagine decisions people need
to make in their lives. This was in the fall of 2009, in April 2010
Ginnie was diagnosed with colon cancer and died January 31, 2011,
one day before her 54th birthday. She never wanted to
know how much time she had. She was going to live each day like
there was going to be another and no one was going to tell her when
she was going to "expire". The doctors never expected her to live
past November. She lived 2-3 months longer than she was supposed
Virginia believed in the power of person centered thinking and
remaining in control as much as possible even when faced with
something over which you have no control. She loved the idea of the
one page profiles and gave permission to share her profile that we
posted outside the door of her palliative care hospital room
(Please click the pictures for the full profile). She was very
interested in helping to make change so she and her family
contributed towards a working, not working review to be shared with
her medical professionals.
was very therapeutic for both Gin and her family to work through
this exercise. It created a vehicle which shared positive and
productive perspectives towards change.
Soon after Virginia's death, I joined our local hospice
palliative care society. They were planning around creating ten new
hospice rooms in a local facility. Part of their mission reads "to
be a voice for the community, an ear to public need". I asked them
when was the last time they asked the community what they needed
and it had been almost 8 years. Offering to set up a survey of the
community, I showed them Virginia's profile, a sample of what
family felt was working and not working and the process of Working
Together towards Change to use as the survey format. They were
intrigued both with the process and Virginia's information. There
were some fears that if we ask people what they would suggest as
recommendations for change that they will ask for extravagant
unrealistic things when in fact simple things are what people are
asking for... having an A & W chocolate milkshake, internet to
connect with their children, a window that was low enough to see
out. We launched our online survey and are just now tallying the
results. At first glance the recommendations we are seeing is very
similar to that of Virginia's. I will be posting a link to the
final report of our survey for a reference for others. The
Working Together Towards Change process is an excellent, simple way
to gather information from individuals using supports and can
be used to help services maintain the integrity behind statements
that they are truly consumer driven.