Amanda (USA)

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.

When Ben was three, I developed a one pager for him to take to his new preschool teachers. It turned out Ben was more interested in his page than his teachers. It had pictures of dinosaurs and whales on it. As I look back at his three year old page, I see many similarities - hugs for teachers is still one of the highlights of Ben's day, dinosaurs, whales and now prehistoric sharks are passions of his…and we are just beginning to get into dragons.

What has changed, is him seeing himself as an "expert" in all things dinosaurs and really prehistoric life. Every year at his school, there is a dinosuar week - for two weeks! These two weeks are the highlight of Ben's year other than his birthday and Christmas. He has been reading about all things prehistoric since he was 2 ½ (well Mom has been reading to him). He is quite the expert among other five year olds and some teachers. He brings some of his dinosaur books, fossilized shark teeth, and fossilized whale/dolphin bones home with him.

Stuttering has also become a part of Ben's life. We noticed it a bit last year and now realized it is "real". His teachers noticed it is more revelant when he is speaking to the class or trying to ask a question of his teachers. We are waiting on speech therapy to start in early 2012. So there is some frustration for Ben. He has all this knowledge he wants to share but struggles to share as much as he would like. We hope the therapy will resolve his stuttering or at least give us coping techniques, in addition to what we do now.  We ask him to take a deep breath if he gets stuck on a word. His teachers let him know they are listening - he has their attention.

Ben will go to public kindergarten next year. This is a bit scary for me - the transition away from the comfort of friends he has known for 3.5 years and teachers that really know him. Thus, I am starting drafts of his one page profile to provide an introduction to Ben to a new school and new people. The one page profile is so much more for me than Ben!

Laurie is our guest blogger this month. She works as a manager with North Star Services in California.  She supports Pam and her staff. Laurie shares the story below of how they listened to Pam and helped her achieve a dream and be more connected to her community....

Ever since she was a little girl she wanted to be an entertainer! Whether it was signing to "You Light Up My Life" on any stage that would have her, or doing it for family, friends or support staff, yes entertaining is her passion!

Pam receives 24 hour a day supportive living services. When out in the community, Pam has no fear of strangers and if she thinks she knows you she will go with you without fearing for her safety. 24 hour a day staffing a must we once thought!

When I met Pam 9 months ago, I noticed that she carried 2 red pom-poms with her everywhere she went. When Pam would meet someone for the first time she would get those pom-poms out and show off her stuff. I thought to myself … a Cheerleader!  Yeah, A Cheerleader! Why not! Why can't Pam be a cheerleader!

Being involved as a volunteer cheer coach I thought, can we support Pam in making a connection in her community doing what she loves?  Entertaining! Cheerleading! Wow! I asked Pam if she would like to cheer on a cheer team.  Pam answered, "That's right." I got excited!

When cheerleading was presented to the team some said, "Pam has "sun downers" and will not go out at night" (practice is every Wednesday night from 6:30 pm to 8:00 pm). Others said, "If it's at night she won't go out." And a few said, "Let's try it!" So that is what we did.

Pam attended a trial class three months ago and has not missed a class since she decided to join All Star Elite "Heart Droppers!" She has made many new friends and has attended other events with her new friends from her team. To watch Pam interact with her teammates will bring tears to your eyes. The care Pam shows to her team, the love in her eyes and the smile on her face says it all. She has found a connection where she is able to entertain, be the star that she wants to be! Each Wednesday night Pam puts on her cheer shirt, packs up her Debbie Boone CD and her 2 red pom-poms and excitedly heads to her cheer practice.

Today, Pam's cheer coach has asked support staff to drop her off and leave. Staff came to her last Focus Meeting and asked, "Can we do that? Leave Pam at cheer practice without support and come back?" That question was answered with another question - "Why not?"

Her support staff now take her to cheer practice, drops her off for that hour and a half, and then come back. Something nobody on her team thought they would be doing just three short months ago.

Later this week we have an appointment for our son to have a speech evaluation. It isn't anything really serious, mild stuttering, but it is bringing up all kinds of emotions and anxieties. We had noticed it, but were wondering if his teachers also noticed.  When I brought it up to them, they immediately responded with examples of what they had observed. They had planned to have a conference with us, and were relieved when I brought it up first. So, it is real; others are noticing it. 

I want to be prepared and provide information that will be really helpful for the evaluator to use and help us know how to support Ben. 

I am working on the 4 plus 1 to capture what we know right now to help identify all that we have tried/done (whether or not it was intentional) to address his stuttering which is usually getting stuck on the first letter of the first word in a question he is asking. We are not sure of our approach in supporting Ben and need some guideance and ideas from a professional. 

I found completing the tool to be helpful in getting my thoughts organized and coherent to be ready to share with the evaluator. I may or may not put the whole tool in front of the speech therapist, but at least I will be able to describe what we have learned and our concerns. If nothing else it gives me peace of mind that I have something to do that is productive while we are waiting for his appointment. I have a sense of being proactive and more confident about getting Ben the support he needs.    

This month's blog is provided by Claudia Bolton of NorthStar Services...........

Historical Perspective:

NorthStar Services, a supported living agency in California, have always strived to support each individual who receives services to have a great life and to be a valued community member. Our concern has been that while the individuals we support are living good lives in the community, for many people, their circles of support are made up primarily of people who are paid to be in their lives. Also, while the people we support are active, participating members of the community many of them do not have valued community roles.

 What we have Tried:

If you have been following this blog you know that we are attempting to imbed value based community connecting "tools" and subsequent skills for community building into our organization's culture.  Since Amanda George,  of HSA, came to our agency and did a "kick off" for the HSA community connecting tools we have tried introducing a "tool of the month" to each individual and their support teams.

In August 2011, we reviewed how our community connecting work is moving along.  We used a Person Centered Thinking tool, 4 +1, to evaluate; what we have tried, what we have learned, what we are pleased about, what we are concerned about and what our next steps would be.  Here are our findings and plans for the future.

What we've Learned:

1. Tool use is not the outcome - valued community roles and relationships are the outcome - Duh!!  The leadership team knew this however, by focusing on tool use we have to keep this in the forefront so that we never assume we are doing all we can just because we are using tools.  The tools help us build our work, just like a carpenter's tool only helps to build a home.  Having and using the tools is only the beginning.
2. We have layers of work and discovery to do.
3. The tools have helped us with the discovery about the person's gifts and the community opportunities.
4. The CSF's (managers/case managers) must have competence and confidence in using the tool prior to taking them to the individuals and their team.  The tools look easy to use but we have discovered that it takes some practice to really use them well.
5. On some teams - we are using the tools but we aren't sure that the staff and individuals are thinking more about community connecting.
6. The Community Support Facilitators cannot be the only implementers for using the tools and for supporting community building.  The direct support staff must participate.
7. We want our staff to have an entire toolbox of community connecting tools so they can decide which tool to use and when. Our goal is that the tools will teach skills and help the staff think more thoughtfully.
8. The team and individual are more interested if the tool and vision for an outcome are visible. For example if the "tool" is posted where it can be seen.
9. The behaviour of some people makes community connecting more challenging.
10. We knew this - but it is clearer for our staff now - that some people don't have connections outside of paid staff, other individuals who receive services, and superficial connections in the community. Recognizing this is a first step.  We are no longer in denial or distortion.
11. When things don't work out as planned we must view it is as a learning opportunity and ask: what worked, what didn't work, and what will we try differently? 
12. The staff and individuals on some teams are just "going for it" and this has resulted in some exciting outcomes for people (i.e., Michelle is volunteering at the library). 
13. Staff matching will be important to the success of our community connecting work. 
14. We need to get more "buy in" from the direct support staff. 

What We Will Try In The Future:

1. Provide support and training to the Community Support Facilitators, so that they are confident and competent in using the tool prior to taking the tool to the individual and their team.
2. Slow down in introducing the tools. We started by introducing one new tool each month and this did not allow everyone to learn about the value of the tool and how it could be used. 
3. Provide more staff training in the use or applicability of each tool before we support the individual's to develop the tool for themselves. For example have the staff try using the tools on themselves or with a team member.
4. Keep the tools visual - Post the tool in the individual's home (with permission of course) prior to their team meeting so that they and their staff will be thinking about the tool before the meeting.  Send the tool out with paychecks.
5. Review and work with the tools at Focus Meetings (like a Circle Meeting).
6. Develop an Action Plan that moves toward tool use implementation and a desired community or relationship outcome for the individual.
7. Recognize staff who take initiative, and who use creativity and judgment in community connecting work
8. Be intentional in staff matching: Discovering each staff person's gifts, capacities, interests and connections can help us make a good job match.  This is something we have been doing but we need to be more intentional about matching when there is an opportunity for community building.
9. We need to slow down, remember the purpose of community connecting work and find ways to share our learning:
10. We could use a Learning Log to record what was tried and what worked/didn't work.
11. We will share our stories - even when it seems like there isn't the time.  
12. We could put our stories and learning logs on the NorthStar server so we have a shared place to retain and share our learning.

In summary, the main things we have learned are:

1. The tool is not the outcome; valued community lives are the outcome. 
2. We must take action.  It's not enough to gather information (about the person and the community). We must go from gathering information and discovery to using creativity and judgment to take action. 
3. The tools appear simple to understand and use, but to use them well it takes practice, thought and sharing of experiences.
4. We must create opportunities within the organization and with others doing community connecting work, to share our learning, celebrate success and learn from what worked and did not work.  

This month's blog comes from NorthStar.......

We had an extremely inspiring month with our community and relationship building efforts. We were fortunate to be able to attend the Learning Community for Person Centered Practices Annual Gathering, where we were able to brainstorm, learn and share with many members that are trying to attain great community lives with important people in their lives. We also were able to participate in a web-ex conference call with Michelle and Amanda, with HSA,  to hear great efforts being made in other parts of the world, then take the information gathered at these two inspiring events to renew our passion for taking the community connecting efforts forward with in our own agency.

Michelle shared how she uses The Who Am I...My Style tool to learn more about the people she is serving. We were inspired to go out and try it and had a great time getting to know each other with two individuals that we support and their teams. This was a great tool to use to get to know each other better. Practicing it with staff first made it a fun way to get the individuals and their teams to open up and share what they know about each other and gave us ideas we may not have had when it was the individuals turn.  This was a great team building exercise as we got to know each other better and looked at what makes us have great days, what gifts we have to share and how we can find opportunities to share those gifts and passions. After completing the tool we came up with an action to take in order to ensure that this was an exercise that has some on-going meaning.

Throughout our learning process of the last few months we have found some things that we would like to share about our tool use.

1.  If you put the tool of the month sample in with paychecks, staff receive them.

2.  If we don't come up with an action plan after using each tool it loses meaning and application. The action plan keeps it in peoples minds more as they go out and try things.

3.  If we practice on ourselves and staff, the people we support enjoy the process more as they don't feel like we are doing something meaningless to them. They enjoy giving input to those that support them.

4.  Practicing the tool on a staff member also helps that staff person think of ways to improve their community lives, therefore making them a more valuable asset to the people they support.

5.  It is ok if we are not "experts" in building community and relationships. What is important is that it is important to us so we keep trying, and that we continue our learning and growth so that we can become experts.

We appreciate all the shared learning that we are receiving in our journey to support great community lives and want to thank HSA and the Learning Community for Person Centered Practices for all the inspiration, guidance and help along the way!

This month's blog is provided by NorthStar.....

Using the "Community Connecting Tools" really enhance our ability to work with individuals and staff on day to day basis.  After our meeting with a Amanda in February, we at NorthStar have put into practice the tool of the month using community connecting tools.

Every individual that we support and their staff meet on a monthly basis.  At these Focus meetings we review community connecting tool(s) and how it is working.  When people we support focus on tool each month (with support from their staff), they feel in control of their success!

We started off with "Who am I…My Places".  It was very beneficial for all staff to see where each person feels comfortable, where each person is already a member and where we can continue to build connections.  This tool reminded staff that many of our individuals already have connections that can be strengthened. 

The second tool that we introduced was "The Relationship Circle".  This was very fun for our individuals; they liked to put down the people in their lives that are important.  Looking at each person and selecting where they would fit on the Relationship Circle was an exercise that took some thought and was a good expression of where the individual sees their Family & Friends.                                

We had a specific success story using the Relationship circle.  Lauren, is very active in the Special Olympics.  She participates in many sporting events throughout the year.  After using the Relationship Circle we found that she was very comfortable with several friends and her coaches.  Lauren and staff decided that this was the perfect opportunity for her to be out in the community and participate without staff at her side.   This was a very big step for Lauren and created a sense of independence that she did not already have.

Another success story happened just this past weekend.  Lupe, another individual, attends church on Sundays.  She goes to church and does not usually participate much.  Her staff is very diligent in trying to get Lupe to be part of the community rather than just being in the community.  The church had a parade in town and Lupe asked to be in the parade.  It was her choice to become PART of her community and to participate.  This was very exciting for Lupe as well as her staff.

Parenting provides daily opportunities to practice "being in the moment" and to "go with" what we know works - person centered thinking. 

Recently my son, almost five years old, told me he wanted me to talk to his teachers. He brings up things that are worrying him either in the car on the way home from pre-kindergarten or at bedtime.  This one was at bedtime. Of course I asked him why he wanted me to talk to his teachers….which led to the following conversation:

Ben:"Mama, Miss Anna (name changed) told me to stop eating my shirt and it made me feel bad and scared me."

Me: "Do you think she was just being silly? Maybe she wanted you to stop chewing on your shirt - it does stretch out the collar."

Ben: "No Mama - she hurt my feelings."  (Okay, need to really listen and understand. Also occuring to me that I have a very sensitive son.)

Me: "I don't think Miss Anna was trying to hurt your feelings, she really likes you. I've noticed you have been chewing on your shirt since you moved to your new classroom. How do you feel when you are chewing on your shirt" (trying to learn what is important to him, figure out if he is worried/stressed about something in his class)

Ben: "Yeah, I like chewing on my shirt. I don't know why I do it. I try to stop, but I don't, then Miss Anna teases me about chewing my shirt. (I'm desperately trying to NOT react to this - I could easily launch into "protective mother mode")

Me: "Okay, well what do you want me to tell your teachers?" (taking action on his initial request)

Ben: "Tell them that it made me worried and scared when they told me to stop chewing on my shirt."

Me: " Okay honey. When I see you chewing on your shirt, what do you want me to? Should I say something funny like Ben does that taste like a chocolate cupcake?" (trying to learn what support works best and what is really bothering him)

Ben: "NO Mama!! That would make me sad and worried if you said that." (oh dear, that was wrong approach…let's try something else)

Me: "Okay honey, I won't say that. What about if I didn't say anything and just gave you a little sideways hug?" (Hopeful. I figured it out that saying something was upsetting -drawing attention, even in silly way, NOT what good support looks like to Ben. Also, I had to focus on "worried/sad". He needs reassurance not correcting.)

Ben: Thinks for a minute. "Yes, Mama that would be good, can you tell my teachers that? I don't want them to say anything to me, just a little hug." (Okay, this seems doable!)

Me: "Okay that sounds like a deal" (our way of finalizing a plan of action)

The following day, I mentioned this conversation to his teachers - quickly of course since only had a few minutes as Ben arrived to discuss. At first, I think the teachers were taken aback when given feedback that their approach was bothering Ben. They of course thought it was a playful and positive way of addressing Ben chewing on his shirt. They agreed to stop focusing on it and give a little hug when they saw it.

At home we also didn't say anything directly to Ben about it, but gave him a little hug each time we saw him doing it. After a week, he said to me "Mama, I don't chew on my shirt anymore and the teachers don't tease me" And Smiled! 

Did I really care about the fact he was chewing on his shirt - well not really. The only concern for me was Ben saying he wanted to stop and couldn't and that he was not happy with what his teachers were saying. Also, the chewing did kinda stretch out the collar of his shirts.

What is most important is we figured out how to provide good support when he asked for it! Whew!

Recently I have been looking for ways to be more mindful in my life with the purpose of reducing stress and finding that elusive balance between work and home. What I have learned so far is to seize the moment. When I find myself having thoughts of "I wish I could", "If only I had time to…" I notice these thoughts and acknowledge I make choices about my how I spend my time. Usually, the thoughts are about things that are important to me like, "If only I had more time to…: help my family eat healthy, had more time to myself, do something fun with my family in nature. Often, I realize all I have to do is pause and spend small amounts of time planning or acting. In the last week, I have been able to get on line to quickly research a couple recipies and adding ingredients to a shopping list, sign up for an exercise class near my workplace, and go to the local botanical garden to see the dinosaur exhibit that is in town (I love flowers and my son loves dinosaurs- a win/win).

I don't think I am alone in feeling overwhelmed by passions that bring about long to do lists which then can bring let down when they aren't accomplished.

Often I dream of having an award winning flower garden in my backyard. When I look out my back window I am quickly reminded of reality-a couple of really beautiful plants in the midst of a sprawling yard that needs help.

Now that my son is almost five years old I am finding the time to once again pursue my passion for flower appreciation and gardening. The appreciation part is what is easy to in five minutes when I find myself longing for a day out in the garden planting beautiful flowers. Luckily, I had the chance 5 years ago to plant some beautiful flowers that come back year after year. Every spring they bloom - some springs I have completely missed the blooms. This year, I made sure to savor the beauty - 10 minutes of snapping photos and now I have photos to remind me daily.

Today, while we were at the botanical garden I was able to take some pictures and think about which iris I want to plant this fall.

Another small step of intention to do what is important. I am happier when I do something, no matter how small, that brings more of what is important to me in my life.

How NorthStar Services helped Rosemary build community and meaning in her life. Carole White, NorthStar Services shares a success story!

One year ago we gathered Rosemary's whole team together (including day program staff and parents). We were concerned that she was withdrawing and did not seem to want to participate in many activities or with other people enough to get out of bed.

At the meeting we identified her gifts, talents and interests in order to figure out how to help her be more connected in her community.  At the top of the list was Rosemary's passion for animals and especially animal rights. After that meeting we tried cold calls to businesses - doggie daycares etc… - it felt awkward a nd did not move forward.

I knew Monica Mankinen, a local storeowner who also runs the Daisy Davis Pit Bull rescue group so I called her to see if there was any volunteer work she needed. I explained to Rosemary that Monica was working with Shiloh who had been terribly abused and neglected and was terrified of many things. Monica was spending a lot of time with him trying to desensitize, socialize and nurse him back to health and needed some help. Rosemary met Monica at an animal fair - they hit it off! Rosemary's staff said, "When it is a good match it just flows, it felt breezy and easy!"

Rosemary volunteers two times a week and works with Shiloh the recused Pit Bull.

Providing good support: Rosemary's staff intentionally focused on the relationship being between Monica, Shiloh and Rosemary.  They talked to Monica about this and explained the staff would always be available if needed, but they would aim to stay in the background. 

The relationships have also extended to include Monica's husband, Joe, her mother, Linda, and her other dog Daisy. Monica continues to learn new things about Rosemary, which deepen their friendship and strengthen their regard and respect for each other. 

To keep this working smoothly requires teamwork and sharing information amongst all the staff supporting Rosemary.  We keep in touch with Monica periodically to find out how things are going.

Monica says, "Rosemary has been diligent with showing up 2-3 times a week and the changes in Shiloh are enormous. Putting together this program requires consistency, patience and a kind heart. Rosemary has all three. We feel so lucky to have her be a part of the Daisy Davis Crew."

In February 2011, Rosemary shared her story at a community connecting training.  Of her work with Shiloh she said, "I feel absolutely wonderful and amazing about doing this. For the first time in my life. To be part of his recovery."