Amanda (USA)

It started with a phone call from Steve about 1pm on Wednesday- he called to tell me he was going to see his doctor because he was concerned about pain in his abdomen and felt really uncomfortable. My husband has NEVER in our 18 years of marriage scheduled a doctor's appointment without "reminders" (read nagging) from me! This was a red flag for me. I left work immediately and met him at the doctor's office. The nurse was just going over the results of his abdominal scan.  I could tell Steve was really uncomfortable, he couldn't sit still.  The results said it was nothing a little laxative couldn't take care of. I asked all the questions about what to look for if it did get serious and we needed to go to the Emergency room - just in case. We left (relieved it wasn't anything serious) and proceeded to follow the directions given to us.

PAUSE IN STORY: In retrospect this is where I learned significant things about what Steve was communicating! Steve has never had a serious illness or surgery AND knows now he has a high pain tolerance. What we learned is if Steve EVER needs to contact the doctor for an urgent appointment, this means he has a serious health problem and should immediately go to the Emergency Room.  I also learned it was really important TO Steve to avoid the expense of going to the Emergency Room.

At 3am, Thursday morning I woke up to the bed shaking.  Steve couldn't answer my questions nor could he walk steadily.  I grabbed the phone to call the paramedics to take him to the hospital.  I actually debated whether or not to call. Important TO: Steve would not want the expense of the ambulance - I should try to drive him.  Important FOR: My husband is really sick, I'm terrified he might die and I am worrying about the expense of the ambulance! Needless to say, I called the ambulance. I think part of my dilemma was accepting the fact that Steve might really be ill. The nurse told us everything was okay. But here he was totally incapacitated - this wasn't supposed to happen!

By 7:30am Thursday morning Steve was in surgery for an emergency appendectomy. All "firsts" for him at the age of 50: ambulance ride, surgery and hospital stay.  He left the hospital by 8pm that night.  He felt well and didn't want to pay for a full night in the hospital if he was okay to go home. And hospitals are for sick people - he was not sick anymore. Again Important TO vs. Important FOR- his doctor agreed he could go home.

And all was well!

I have learned where to advocate for Steve with medical professionals and with him. If he is in pain, we need to take this very seriously - there is something significant wrong. Do more tests until we figure it out. We shouldn't have left the doctor's office with the degree of pain and discomfort he had.  OR I will take him to the Emergency Room first.

Barb Swartz-Biscaro has been walking the walk for many years. She is a Canadian woman who has been using person centred thinking tools and One Page Profiles in her own life ever since she has been exposed to them. A few years ago, Barb created a One Page Profile for her brother who had an acquired brain injury to help the hospital staff be more in tune to who Johnny was as a person and not a patient. This was long before HSA started looking at the use of One Page Profiles in Hospitals. Barb has also done a lot of work in the last few years introducing One Page Profiles in northern Ontario schools. More recently, Barb has developed a Mom/Spouse One Page Profile as a way to open communication with her family.  Barb has recently blogged about her views of One Page Profiles and I'd like to share this with you here. What follow comes directly from Barb's blog.

One of the greatest ways I have seen to communicate our uniqueness is a One Page Profile. They are basically a one sheet synopsis of your strengths, values and needs. They communicate information for specific purposes that make a difference, no matter how big or small in people's lives. I have a mom and wife profile, 3 work profiles, resume profile, a health profile...all of these profiles communicate information to a specific audience so they understand me better in the relationship that we have. I AM UNIQUE and want to be treated that way. My children have educational profiles for their teachers and other supports. I have seen pregnancy and birth profiles. They are a fantastic way of communicating the information that you may assume people already know about you but they don't. Only you know you completely and often lack of communicating our needs ends in lack of success, frustration, giving up on our dreams or goals, or a momentary pause in pursuit of our passions.

There are many things that people don't know about me, even those closest to me. My kids were surprised by some of the statements in my profile. My desire for people to treat me uniquely led me to help others to pursue this as well. My job is all about personalization, yes I get paid to do what I love to do most. I love to see people exploring who they are and why and letting people know what works for them. It is so useful in living a happy life. Putting pen to paper is so powerful, we can think all day long and store our thoughts but until we write them down and make ourselves accountable to ourselves our thoughts tend to remain rolling thoughts. I write things down, make it concrete and then decide what the next steps are and write those as well. We are who we are because our life experiences have molded us.

Some find it too personal, and intrusive, some find it too mushy and soft. It is not as long as you are only sharing what needs to be shared for specific purposes. I wouldn't tell my doctor the same things I would tell my employer. I only tell people what they need to know to help me achieve success and comfort in a specific situation. When it is about your success and comfort, what do you have to lose? We all deserve the respect of being considered unique. The old saying, "walk a mile in his shoes" is so true. We cannot judge others because we have not lived their lives and have no idea what motivates their actions. What we can do is LEARN about people, ask questions, try to understand what motivates them, accept that people have a right to be different, share ourselves with others. To me it is just common sense. I want to be the best I can be, keep growing, learning and creating a future that makes sense to me, if other people can understand me better and help me along the way....why not take advantage of that? Less stress, frustration and work for me in the end, and way more smiling (on the inside). Ahhhh....my life is personalized....and it is good!

Thanks for inspiring me Barb!  I am sure others will also be inspired by your thoughts and examples.

Ben started Kindergarten this month! I was able to put his one page profile together the week he went to school.  I sent it with him in his backpack the third day of school.  His summer school teacher shared a few things with me to put on the profile…like he is caring and helpful to other students.  Also, she shared that it was difficult for him to wait for the teacher's attention. This was also feedback from his preschool teacher.  His teacher is keeping an eye on the supports he needs and has already helped edit the "What is Important to Ben at School".  It really has helped me learn that I don't know much about what goes on in school and find it difficult to write the Important To section without input from his past teachers.  The "Support Ben Needs at School" section is my way of communicating some of the concerns we have and how to support Ben.  It is an introduction to Ben.  As we go through the school year I plan to get feedback from him and his teacher to add to the one pager.  Also, hoping the teacher sees it as a useful tool and perhaps expand to others in class.

Friendship through sharing a passion for swimming

This blog comes to us from NorthStar Services in California.  They have been exploring community connecting and building community with the people they support.  Brittani writes this blog and is Tara's direct support staff.

Tara is a beautiful lady and I have the pleasure of supporting her on the weekends, so we get to do a lot of fun things together.  She communicates non-verbally and clearly lets us know what she loves, as well as what she does not like so much.  Tara loves spending time with her friends and doing fun things and she really needs the support of her staff to help her to make these things happen, she receives 24 hour support.

During the summer, one of Tara's favorite things to do is going to the lake.  Tara loves everything about the lake! She digs her toes into the sand, barbeques delicious food, swims like a fish, watches the boats, and most importantly, she spends time with her best friends.  Sometimes she only goes to the lake with Lupe, Heidi, or both.  Sometimes she invites five or six people to go to the lake with her, and if we add in everybody's support staff, we get a party at the lake! It is so much fun for everyone, and Tara gets to spend time with her friends and create a community that exists on and off-shore!

Once we get to the lake, Tara doesn't even stop to settle down and find a spot, she jumps right into the water!  Sometimes, I don't even have time to change into my swimsuit, and end up going in shorts and a t-shirt because Tara is too excited to wait for me! Tara would swim all day long if she could! Last week, we went into the lake, which was still freezing cold, but Tara did not mind one bit.  After about an hour, I was exhausted from swimming and asked her if we could go sit in the sand and take a break.  She nodded her head and swam all the way in to the shore, and as soon as I stood up to get out, she turned around and began swimming out into the lake again, and laughed at me! You have to love that sense of humor!

As my blog introduction states, I have an interest in the use of person centered practices to support people around their health - including chronic health conditions, cancer and personal wellness. I know that it's been a while since I've blogged about this here, so here goes...

The other day I was searching the internet for health websites to explore the ways the health industry is implementing person centered practices in patient care. I was thrilled to discover a website, as well as a guide, that focuses on the improvement of patient-centered care (click on the picture to access to guide.  Here is a link to the website:  http://www.patient-centeredcare.org/inside/abouttheguide.html

The guide, as well as the website, provides examples of good person centered practices. One organization called Alegent Health Lakeside Hospital, is using their version of a One Page Profile called My Story poster (click on the picture on the left to see a pdf version of this poster).

Northern Westchester Hospital encourages patients to request their preferences so that they can be more person centered with them during their stay in hospital (click on picture on the right to see a pdf version of this poster. What a great example of being proactive in finding out what matters most to people and making efforts to honor their rituals. Something that is most essential when we are not feeling well.

Although I have not had the chance to read the entire guide and explore the entire website, I just couldn't wait to share this with all of you. I am looking forward to exploring these resources further and learning something new, and perhaps share our own best practice examples with this group.

If health is your main interest, don't forget to have a look at my Think About Your Life blog focusing solely on health.

I continue to think about how to provide good support to families with children (of all ages) with disabilities.  When thinking about what works and what would be effective, I turn to my own family and my personal experiences, to find inspiration and a deeper understanding.

I just attended a Stakeholder meeting for Family2Family - a tremendous group of advocates, professionals and people, interested in improving the disability system to focus on providing supports for families.  So much of what we discussed had to do with; what do all families need and looking at how families enter the "disability system" and lose their community connections, relationships - become isolated.  Also, we know the sense of community and building community is something we have to intentionally do in this day and age.  There are community building efforts springing up across the US in many communities.  This is tremendous and sure to help, though also sad.  I won't go on lamenting the loss of community, except to examine what we as a family have had to do, to build relationships for ourselves.

My husband and I are both over 40 (one of us is 50) and we have an awesome five year old, Ben.  We are older than all the other parents; in fact we are much closer to the grandparent ages of many of Ben's friends.   As Ben has grown we have realized we also live in a neighborhood devoid of any children under the age of 13. Essentially, we are isolated from other families that have similar life experiences. Ben doesn't have people to play with outside after school, we don't have neighbors to talk to about the "terrible twos and the stages beyond".  I have gone through the "hopes and fears" many times regarding this situation.

At times, I feel like we need a navigator to help us figure out the school system, know how other families are dealing with things, like taking lunch or eating the school lunch, how to support my son when he feels he isn't smart or good at writing his letters.  I need a network of families with children also about to enter kindergarten who have children with anxiety.  In the disability world we are starting to support these kinds of networks- they are vital to feeling a sense of safety, comfort and confidence.  I realize how important groups of people going through the same thing are - I have to be really intentional about developing relationships with the "moms" in Ben's pre-kindergarten class.  I know in my mind this is important and it is a little scary.  In a way I feel that I am in a new school having to make friends and fit in.  I am relying on my ability to develop these friendships, to have a support network to help Ben get the best life he can.

These past few months we have found a family to connect with (what a relief!).  They aren't as old as us, but have kids at the same stage.  We get together and have "grown-up time" and of course, end up talking about kid topics - no sleep, schools, nutrition.  It feels good to have that social support. We all need this.  So, I come back to building community and networks for all of us.  We need to change our culture to one of welcoming, reaching out and have regular opportunities to build relationships.  All parents have the same dream - wanting our children to be happy and then fill in the blank _____ successful, authentic, hardworking etc…. But the first and foremost is happy.  In thinking about how this all connects…what are your comments, ideas, and examples of what has worked?

This month's story from NorthStar Services is written by Jonathan Peakall, direct support staff from the coastal town of Fort Bragg, CA.

The Friday night gang started simply because Kyle and I were looking for fun things to do on Fridays. On a whim, we decided to call Ian, who had recently started to be supported by North Star. It turned out to be a great fit, not only with Kyle and Ian, but with myself and Ian's support person Michaela. Over time, this "once in a while" thing became a regular thing. Kyle would always ask me what we were doing with Ian as soon as I arrived! He began coming up with ideas of things to do.

In the beginning, we had simple plans, meeting to go swimming or going out for coffee after dinner. It began to slowly expand until we were eating dinner together every Friday and then hanging out for the evening. At this point, the friendship between Kyle and Ian really started to form and Michaela suggested that we invite a third to our little group, Rosemary (Kyle and Rosemary had known each other for 30 years).

Along the way, Michaela and I started to do more thoughtful coordination and have conversations about how to account for the different personalities and needs within this group. It went slowly at first and then more quickly as the group really started to come together.

As everyone grew more comfortable with each other, we started engaging in more ambitious plans: BBQ on the beach, parties, camp out's at my place and so on. We also started to see changes in the group, both individually and collectively. By now, all the members of the gang were planning ahead, coming up with things to do, really taking over the direction and clearly caring for and about each other. And it had become a tradition and an important thing in their lives.

But life changes, and it came to be that both Michaela and I stopped working on Fridays. We were very worried that the Friday gang would dissolve. However, just a couple of weeks ago I got a photo sent to me of the gang at the local Coast Guard station after having taken a tour of the boats, with big smiles on their faces. While I have to admit there was part of me that felt sad that we were no longer needed, I was so glad to see that the friendships we had helped to forge were strong and capable of taking care of themselves.

Carole White says - It captures the kind of thinking that we at NorthStar constantly try to instill in our work. It requires openness and the asking of many questions.  A bit of history to this story, is that Kyle and Rosemary have known each other for over 30 years. But as adults, their ability to spend time together was still tied to their mothers' time and organizational abilities! Now that they are receiving supported living services they are able to create time to spend together.

Here is another success story from NorthStar Services in California of putting what is important to a person first and supporting them with health and safety to achieve their dream.

Teresa is someone that we support that has Prader Willi Syndrome. For years she lived in a group home with several other women that also have Prader Willi Syndrome. Teresa and her mom Ann worked very hard advocating for individualized supports in the form of Supported Living Services through NorthStar Services. Teresa has now been living in her own home, with support, for 5 years very successfully and independently.

Teresa has had a goal of getting her black belt in karate for over 6 years. She wanted to learn self-defense, and wanted to exercise in a way that was fun for her.  She started this quest while she was living in the group home, but was not able to attend very often due to the limitations of congregate living. Once she moved into her own apartment she began attending regularly 2-3 times per week. Throughout this process she met many wonderful people that were willing to give their time and expertise in order to help her achieve her goal.

The instructors at the gym went out of their way to help Teresa learn the moves with the proper form and technique. They also encouraged the class (of regular non-disabled students) to pair with Teresa, go a little bit slower while she learned, but to keep true to the principles of karate. During the last six months of her training, she participated in a black belt preparation class. This class was not at her normal gym, and had all new instructors for her to work with. It was soon apparent that Teresa had the dedication and the heart, but needed just a bit of extra support, so a buddy was assigned to her, Mrs. Gomez, to work alongside Teresa and help with slowing the moves and routines down for her.

Teresa had to pass all of the same requirements as the rest of the class, and became their model of "Never Give Up." Teresa was recognized for her persistence during the black belt ceremony on December 10^th, 2011. She is so proud of herself that we decided to use the achievement tool to help us focus what we learned during this journey. It was a great way to help with the celebration and record the learning so that we can have many more of these fabulous experiences with Teresa.

Valerie, Community Support Facilitator, from NorthStar Services in California writes this blog as part of a series from NorthStar on community connecting with the people they support.

Heidi is someone we support that does not have many close relationships. She has many friends, but does not get together with them outside of her sheltered workshop very often. Many of her friends reside in group homes, which really limits their ability to have after hour fun. Heidi loves to talk with people; she will talk with them at the store or bank. She doesn't take it further, such as exchanging phone numbers or setting up time to meet and hang out.

Heidi has a passion for animals! She had pets in the past, but has a difficult time taking care of their needs, and not getting frustrated with the noise, mess and daily care required with pets. This does not stop her from wanting one, and from loving them.

We have tried numerous times to get Heidi to try volunteering, or to join a group, but she is happy with the friends that she has, and does not like to make commitments that take away from her relaxing, fun time in the evening and weekends. She lives with another individual that receives services, and they both have staff. She gets plenty of socializing without stepping foot outside of her apartment…but we found a way to make it happen!!!

Knowing what is important to Heidi was crucial in making this match. We also had to look at where in the community we could find a resource that matched her interests and was able and willing to look for ways to maximize her abilities. For a long time we did not have much success, until Heidi just happened to go to a store across town, while they were having an animal adoption day. We got a flyer, found a good contact person that was eager for help and interested in working with Heidi, and a match was made.

We combined Heidi's love of animals with her desire for talking to community members and found the perfect position with her. She now volunteers one weekend per month with a group that helps find dogs loving homes. She walks the dogs, pets the dogs, provides a good introduction to interested families and most importantly she gets to love the dogs. The fact that the adoption days only happen once a month made it easier for her to try it. It does not take up too much of her time, but gives her an opportunity to be part of a group, to give back and to make new friends. There is also the possibility for increased volunteer time if she gets comfortable enough, but the short time commitment is perfect for her right now. We are in the beginning stages of this success, but are hopeful that we have found a home for Heidi.

For the past 15 years developing a person centered service/support coordination role in the developmental disability system has been a priority for me. I have seen the changes from the mid 1990's of service coordination role to the present role. Luckily, we as a state system are moving back to the roles of advocacy, support, facilitation and resourcing that we were really getting good at in the mid 1990's.

When I started in 1995 with the Department of Mental Health as a service coordinator, my vision/passion and job were in alignment - helping people and their families live the lives they wanted. I spent time with people and their families in rural Missouri. There were few paid services, thus we relied on networking and coalition building to get people and their families supports they needed. We had time to get to know people and develop plans with them that focused on real outcomes. Service coordinators were identifying what changes needed to happen in the system to facilitate "real lives" for people. When paid services were authorized, congregate days services and vocational programs were switching to individualized supports in peoples' communities and supported employment was key. Service coordinators linked families together to provide support to one another, share resources and talk about school experiences - a general support network.

What happened?

Scarcity of resources and increased attention to quality of supports and services. The role of the service coordinator became inspector, monitor, justifyer of paid services and then if time, advocate, facilitator and resourcer. What I have seen is a gradual move away from the activites that save the system money (resourcing, advocacy, networking) to regulatory activities to keep people safe and preserve the limited dollars available within our state system. It seems strange that an increase in focus on quality would change the role of service coordinators so dramatically. Quality is good afterall.

When I ask this question around the country to service coordinators, "How many of us became service coordinators to monitor, complete paperwork,bill for our time, justify the need for services, and/or act as "police" in finding mistakes and concerns with agencies providing residential services?" No one has yet to raise their hand. These activities are not inherently "bad". Ensuring quality services/supports that do help people achieve their person outcomes is a really great thing! Service coordinators want to help people achieve success all around. Scarcity of resources brought about high numbers of people each service coordinator/support coordinator was supporting and fear on the "system's" part that we might run out of money. We built our system to respond to crises rather than prevent crises. This costs more in resources: money and time.

Recently in our state, we have started to hear the words supporting, connecting, planning with families and people and advocacy.  We are seeing traditional service models change - the advocacy service coordinators have been doing for years of saying people need more choices - to live how they want to live, work where they want to work and have CONTROL in their lives, is slowly changing.

Service coordinators have continued to be one of the voices from within the system for change. Using person centered thinking tools to identify what is working/not working from their perspective, as well as learning this for all the people they support, provides a foundation for action and change. We need this information in order to do the true sense of service/support coordination.