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Success Stories

If you have a story that:

  • needs to be told
  • would inspire others to promote person centered practices
  • illustrates a failure that teaches a valuable lesson learned
  • can be shared and used in training

Here is your opportunity! 

You can click here for some great resources to use to develop, structure and tell your story.

Please send your story (with the subject line "PCP Stories" to the Materials Development Committee for review and possible posting below!  Also please format as closely to the ones below to make it easy to paste in.

Thank you for sharing your learning!

 

Tina Calderaro-Mendoza

<tinac@tri-counties.org>

2/23/2010 7:27 PM


Hello ELP folks!

I just wanted to provide you with an update that we have conducted our fourth Person Centered Review meeting for a youth by the name of Andrew age 20yr and it was yet again a wonderful process and fantastic learning experience! The PCT Review meeting was introduced to us by Helen Sanderson and Associates and they are meetings held in support of youth in transition in order to gather the necessary information needed to support that youth in transition from one grade level to the next but most importantly from the school setting graduating and receiving adult services. We at Tri-Counties have a pilot program where we have begun to introduce this concept and style of planning to our schools and in our northern offices the schools have begun implementing this on their own in many cases and in our southern offices we have now conducted 4 from 2009 to current.  

What was so wonderful and different this time around was that Andrew sat at the front of the room with me ( facilitator) and helped me conduct his PCT Review meeting, he loved the attention and the fact that everyone in the room was there to support and listen to him! He also took charge of making a list and purchasing all of his snack ( hospitality items) with the help of his friend Adam who had successfully gone through our first PCT Review a year ago. Adam helped Andrew understand how to prepare and what to expect in his review. Moreover the teachers have now supported 3 students in this process and this time they were able to assist with half of the prep work which greatly assisted our agency and Andrew's service coordinator. Andrew's father prior to the review was not an actively working with the teachers to support Andrew, he is a single father and very sensitive to how he is perceived.  This PCT Review allowed his father to hear of all of Andrew's successes and positive qualities and he was able to see how much Andrew was supported and cared for by his teachers. One of the outcomes was that his father and the teachers would work on a plan to support Andrew in partnership  in an area of focus. According to the teachers this would not have happened if they continued to have the "regularly mandated meetings" because the atmosphere and focus is so different.  All parties agreed that they had learned more about Andrew and feel confident about the level of support that is in place and new goals set as a result of this meeting to support Andrew in his eventual transition from school to adult services.  

Some of the feedback was; "The focus of the PCT Review is to talk about the positive qualities/ likes/ dislikes of Andrew and discuss all the valuable information that the school and Regional Center has regarding Andrew in order to avoid this getting lost in transition. PCT and the PCT Review are great in that it allows parents to come in and express their concerns in a non threatening atmosphere where it is a celebration of the person and all the wonderful things they can do. The PCT meeting felt like complete collaboration between the school , parents, regional center where EVERYONE is taking responsibility in helping Andrew achieve his potential."   Many Thanks again to HSA what a wonderful and valuable process and it is so much FUN!  

Best Wishes Tina

Note from a grandparent to an ELP facilitator:

>>>2/16/2010 1:07 PM >>>


Thank you for answering my questions.  I gathered from the meeting that Jane would have an IHP unless she had a very different type of care.  The attendees at the meeting really loved her ELP and wished that they could be doing something like that rather than IHP's.


The finished (new) IHP was delivered to us on Saturday.  It is greatly improved and I am very pleased.  I was afraid that the person who actually produced the final document would make unwanted (by us) changes.  She did not.  The (previous) IHP was vastly different from what we had discussed at the IHP team meeting and it was written in stone.


This (new) IHP incorporates Jane's desires and needs and the people (including our family members) who can help her. 


I am hoping that Jane will move to a TBI facility.  I think the State is working on it but the progress is glacial.  The IHP can go with her and we won't have to be nervous about what it has to say. 


As you know, I greatly appreciate all that you have done.  Your contact with Jane and her Mother, your wonderful advice, your generous gift of time to prepare the ELP - all mean so much to me and to our family.  With your help, Jane's required IHP looks a bit like an ELP rather than a canned exercise.


I shared Jane's ELP with Dr. Jones, her Neuropsychiatrist, so that he would know Jane better.  He was very appreciative.


Jackie, Grandparent

Using 'working/not working' with Paul

by Pam Hanna

January, 2010

 

Click here for a story from South Dakota.  It is a nice way to illustrate working/not working in pct training or coaches work.

 

A SONG FOR MADELAINE

Brenda Beaudoin

Community Living

Timmins Integration Communautaire

May, 2009

Lise is a woman who lives in a Community Living Timmins group home. 

She has been there since the 90’s and does not want to leave it for a more adventurous life.  At home she has her rocking chair and her social life.  She’s content.  Lise lived with her mother previous to that - only after mom was over 90 did Lise came to share her life with Community Living. 

Having Grown up in a French Canadian family, when her mom passed, Lise’s two sisters in Timmins became her regular companions.  Madelaine would take Lise to the cottage in the summer, home for Christmas, shopping for clothing, out for Tai Chi and lunch and much more.  Madelaine ensured that things were right for Lise.  She loved her and cared for her:  she was always there for Lise.  For many years Lise worked  and then retired to the Vic Mahoney Day Program where she visited friends and participated in things she liked to do. 

French Canadian Culture has always been an important part of Lise’s life.  Since Joining Community Living Timmins, she has taken violin lessons, and loves to play along to fiddle music.  This past Christmas, Lise performed on her violin at  the Vic Mahoney Centre.  Madelaine was her guest of honour (The picture with this story shows Madelaine and Lise after the party).  Madelaine was proud and impressed.  Always shy, it was for Madelaine that Lise played her best.

Within the week, Madelaine passed away.  An unexpected tragedy for all, Lise’s grief was deep and continuous.  But for Lise and Madelaine, their loving relationship on this earth ended with sharing, music and accomplishment. 

Tony's Wisdom

by P.Sue Kullen

February, 2009

I spoke to my friend Tony last night for an hour.  We have been friends for almost 15 years.  I was the director at an agency that provided support to him.  We remained friends after I moved on and after he moved to a new agency.

 Tony has always helped me to view the support system through fresh eyes.  He allows me to pass on his quotes in hopes of helping support professionals “get it”. 

“It’s hard to be honest when they hold it against you.” 

“Guess what they say about me?  That I talk too much!  Hey I ‘m just a sociable guy.” 

“They made me do my laundry twice.  Was that right?” 

“They put me on probation for two weeks after I lost my job.  Losing my job was punishment enough.” 

“My job coach yelled at me a lot.” 

“The victims get treated worse than the offenders.” 

“My staff person looked at me with those cold eyes and lied to me.” 

“Guess what they labeled me?  A liability; I can’t even be human.” 

“She yelled at me three times but I only did it once. I asked her why and she said she wanted to get it through my thick head.” 

“It’s always the middle man.” 

“It’s time for a change.” 

Tony was supported to apply for, and get, a New Directions Waiver in the State of Maryland.  He has a support broker who helped him design his own support and he hires/fires his support staff.  He now has his own place in Silver Springs, MD, works at Home Depot, and is due for a raise soon.  He lives near the metro and goes where he pleases.  He is in charge of his own money and was able to keep all the money he earned from a seasonal job at Macy’s at Christmas; a long time dream of his. 

Change is possible if we truly listen to people. 

 

Social Work Today

Person-Centered Thinking in Developmental Disabilities —

Dreaming Possible Dreams
By Lynn K. Jones, DSW

January 19, 2009

http://socialworktoday.com/webexclusive_011909.shtml

A Family Affair

Brenda Beaudoin

December, 2008

Chris is a gentleman who lives at home with his parents.  He’s associated with Community Living Timmins Vic Mahoney Day Program.

A while back, he participated in an interview process to improve supports for people, as well as develop better interviewing skills and practices for myself and our Executive Director.

It became apparent that, although Chris enjoyed the Day Program, he wanted more.  He wanted a part time job that provided him with more spending money.    What to do?  This didn’t sound like a complex problem that required months of planning.

We followed through with a Using Gifts to build Contributions exercise with family and Day Program staff.  It confirmed what Chris had told us – that shredding was something he enjoyed and was good at. 

Here comes the Family Affair!   Chris’s sister is my nephew’s partner.  They both work at KIA TIMMINS for my brother Bruce Stewart and his wife Rosemary.   When I asked Chris if he would like to join his sister in gainful employment, his response was physical and forced the air out of my lungs.  It took a while for Chris to get over hugging me and the ED.

Chris took the city bus by himself to KIA.  Chris’s sister set him up in his new work station with job expectations.  She made sure he got his breaks and got home at the end of the day.

Chris is now a regular part-timer at KIA.  Everyone at the business is good with Chris and he is a proud and more fulfilled person for it.  He tells me regularly of his work there and how well he’s doing.

He’s definitely added more meaning to my appreciation of family!

Re-framing Success: Tommy's Story

by Susan Burke Harrison

December, 2008

Tommy is a hard-working, friendly man who has had more jobs than anyone that I ever met in my entire life. Name an industry or a business and I bet he’s done it- Roofing, road paving, multiple fast-food restaurants, a bagger at Giant, a “carnie” with a company that goes around the state providing rides at carnivals and the list goes on and on.

His typical scenario went like this… get a job, love the job, get 3-4 paychecks, hate the job, quit or get fired from the job, be unemployed for 2-9 months, create havoc in his personal life, get a job, love a job and so it goes. When his Team convened to “problem solve” about this issue the conclusions were always the same- “Perhaps, Tommy is not ready for a job” or “He doesn’t value work.” or my personal favorite, “Tommy doesn’t appreciate how tight the job market is getting!”

At one of these particularly painful problem solving meetings, I suggested that perhaps we were not seeing Tommy in the correct light. I asked the group of truly caring but annoyed professionals where in life do people work for a short period of time and get a good reputation as being successful. In a flash of brilliance, I got my answer- a “temp agency”! I asked what would happen if we helped Tommy connect with a local temp agency- how could that change his life? How could he be seen as a valued member of the workforce? What might we learn?

Well, Tommy got connected to a local temp agency- not a disability or human services agency but a “real” temp agency where work- real jobs is the measure of success. Now the scenario goes like this…accept a job offer for a specific period of time, love the job, get 3-6 paychecks, say “thanks and good by” at the end of the contract, get another job, love the job…

Tommy is one of the most sought-after workers that this temp agency employs. He isn’t seen as an employee with a significant intellectual disability but as an employee who gets great reviews from his supervisors. Companies often try to hire him full-time but he just grins and says, “Thanks, but I have to move on.” Talk about understanding your personal power!

So, we learned another lesson. Thanks, Tommy!

 

When you least expect it!

by Bill Allen

October, 2008

I spent a part of yesterday afternoon in a family resource center in a Central Coast town in California.  I was there to facilitate some discussion groups about improving access and materials on a state agency website.  This particular website is designed to distribute information about health and safety to individuals with developmental disabilities, families, and service providers.  It was a great experience and I gathered a ton of information, but that's not why I'm writing.


The last group I facilitated was made up of parents.  All of the parents introduced themselves and one described herself as the parent of twins with severe intellectual disabilities.  As we moved through the conversation, we started talking about the materials on the website and I asked what did you like about these slides and what could be better.  The parent I mentioned said "I think you should make the materials for people with developmental disabilities from the perspective of how you (parent, service provider) can help me be successful, like in person-centered planning.  She looked at me and said do you know what I'm talking about?  That was probably because of the surprised and/or bewildered look on my face.


I said I thought so, but go on and tell us what you mean.  She then proceeded to riff for about twenty minutes on one page profiles and communication plans and how they had radically changed the relationship she has with her children's caregivers (e.g., teachers, respite, etc.).  She said that instead of sounding like she was lecturing them on how to take care of her children, here was information on how they could help her children be successful and that they really got into it.  All of the other parents were listening intently and quietly and I have no doubt that more discussions will follow.


You can't imagine how awestruck I was for that twenty minutes.  It was a total affirming experience and it made me feel proud of the work that you have all done all of these years all over again.  I'm probably way too optimistic, but it seems like things are reaching some sort of critical mass here in California and that's exciting.  In a state this large it could still be another ten to fifteen years, but something is happening and it's before I expire!


As my business partner John Shea has always said, paradigm shifts are hard to come by and most things change incrementally.  I never liked hearing that, but I'm starting to see that he's probably (still hedging my bets) been right all along.


Okay everyone, back to work!    Bill

 

Full of Life! Older people and person centred thinking

by Helen Sanderson

October, 2008

Hi everyone It is a national 'Older People' day this week in the UK. We have put together some stories to celebrate this, and the difference that person centred thinking can make. These stories have come from the   'Practicalities and Possibilities' programme that we are running with 9 authorities (with the Older People Programme.) There are 4 stories here, and for those of you who were at the Gathering this year, it won't surprise you to hear that Gill Bailey was behind two of them! Have a good week Helen

LINK:  Success Stories with Older People from the UK

Camarillo Acorn - "A New Way of Thinking"

By Michelle Knight

April 25, 2008

 

'I'm actually getting real independent now. I probably couldn't say that three years ago.' David Pisciotto, 33
 

Life for David Pisciotto changed for the better four years ago when he walked into Villa Esperanza's Westlake Village office looking for job training and help to live independently.

 

Pisciotto, who is developmentally disabled, had been on psychotropic medication for depression and was living with his parents. A lot has changed since then.

 

He no longer takes the medication; he moved out of his parents' Moorpark home and into an apartment in Simi Valley. And he has an active social life that includes a girlfriend and country line dancing with friends several times a week.

 

"Yes, I am happy," said Pisciotto, 33, wearing a black Keith Urban T-shirt. "I'm actually getting real independent now. I probably couldn't say that three years ago."

 

A quiet revolution

 

Villa Esperanza Services began in 1961 as a day school for special needs children. The Pasadena-based nonprofit has grown into an agency, with program sites in Thousand Oaks, Westlake Village, Oxnard and Canoga Park, that provides a range of services that include residential, job training and independent living skills for people of all ages with all types of developmental disabilities.

 

When Villa was founded, it was common to identify people who had developmental disabilities with words now considered too ignominious to use. Villa's founders, mothers of special needs children, originally named the school Pasadena Retarded Children's Foundation. The name was changed to Villa Esperanza, Spanish for "House of Hope," a few years later.

 

Other changes have also taken place in society since then. People with developmental disabilities are no longer indiscriminately segregated from the general population in state mental hospitals or isolated schools. Public schools often combine special and general education classes for portions of the school day.

 

And a 40yearold bureaucracy wants to see more changes. The Santa Barbarabased TriCounties Regional Center- one of 21 private, nonprofit agencies contracted with the state to meet the needs of people with developmental disabilities- is working to revamp language and methods that are used inside and outside the agency by focusing on personcentered thinking (PCT).

 

The regional center coordinates and often pays for services rendered by providers, such as Villa Esperanza, to nearly 10,000 people with developmental disabilities living in Ventura, Santa Barbara and San Luis Obispo counties. TriCounties has offices in Oxnard and Simi Valley.

 

Person-centered thinking is not a new concept. Tri-Counties has been using it for a dozen years but in a limited scope. By taking the lead in changing its culture, the agency hopes the concept will gain wider acceptance and help reduce the stigma society attaches to people with developmental disabilities.

 

The PCT concept is difficult to describe in a couple of words. It's so fundamental to general social interactions that most people don't give it a second thought, but it's a revolutionary way for people with developmental disabilities to be treated, said Tina CalderaroMendoza, coordinator of the person-centered thinking project at Tri-Counties.

 

Using PCT, a Tri-Counties' service coordinator asks the person with the disability what their aspirations and dreams are for the future. The coordinator also collects input from people close to the individual- their family and friends- and puts together a plan to help the person achieve their goals to whatever extent is possible. The service coordinator then brings in organizations and agencies that provide those services and monitors the success of the plan.

 

The individual may want to have an apartment, hold down a job, obtain more education or participate in community activities, for example.

 

"We're digging deeper, and we're really making sure that we listen to the persons we serve," said Calderaro-Mendoza, who was a service coordinator for several years before accepting her new position in February.

 

Tri-Counties created the position after receiving a $400,000 grant from the Weingart Foundation to expand the person-centered thinking concept beyond the agency's walls, even internationally.

 

The PCT philosophy considers the common practice of speaking to the companion of a person with a physical or developmental disability instead of directly to the person as disrespectful, as well as referring to the individual in the third person when they are present.

 

Infusing the strategies of PCT throughout the agency's culture has changed the way Tri-Counties does business. All of its employees will be trained on the concept and all internal and external literature changed to reflect it. The agency's service coordinators refer to a written formula when establishing a service plan that balances what's important for and to the person with the disability.

 

"It's really important to have balance," said Calderaro-Mendoza.

 

Clinical information is exchanged between Tri-Counties and the service providers before any meetings. Therefore, when service coordinators meet with a developmentally disabled person, their family and the service providers, the tenor of the meeting is informal and the person with the disability is included in the discussion. The meetings can be anywhere a client chooses, such as at a pizza parlor.

 

Some TriCounties employees are members of a PCT task force that includes service providers, other interested parties and members of Area Board IX, one of 13 regional boards across the state that protect and advocate for the rights of people with developmental disabilities.

 

Task force members share best practices with each other and with national and international organizations that work with this segment of the population.

 

"We are finding some real nice success in doing this work," Calderaro-Mendoza said.

 

Successful strategies

 

Though the PCT approach generally goes unnoticed by the person with the disability, those who work with them say the strategies are successful.

 

Jonnie Turnure, a 15year employee of Villa Esperanza and its independent living services coordinator, said it's been "inspiring" to see people with developmental disabilities being treated in a more respectful and thoughtful manner and to watch them succeed.

 

Rolland Klimek, Villa Esperanza assistant director, said he asked David Pisciotto what skills he wanted to learn or improve and has been helping him with public speaking, social skills and table etiquette. Pisciotto said he also wants to become a better self-advocate.

 

"I listen to them," Klimek said.

 

Klimek, who left a lucrative landscaping career two years ago to work at Villa Esperanza, said he's been rewarded by watching the people the agency serves emulate his example and treat other people with disabilities with consideration.

 

"It's not about the money," Klimek said. "Here, it's giving back to people."

 

Pisciotto said his life has been on track since coming to Villa but he still has goals to achieve. He plans to start a part-time job at an office supply store in Simi Valley this week but eventually wants to land a full-time job and buy a new car.

 

"Everything else is pretty much there," Pisciotto said.

 

Kaden’s Story

by Jeana Daley

February, 2008

 

Last September we began to question our youngest son’s developmental progress.  He had gone from saying 2-3 words at 11 months to saying nothing after his 1st birthday(July).  He had always been a very content little boy but he had starting to want to be by himself, was shying away from affection, and had began entertaining himself by pounding his head against the wall.  After a referral from our pediatrician we became involved with the birth to 3 program and had gone through an evaluation with him.  Kaden scored significantly low and we were set up for another evaluation. 

At this time I began keeping a Learning Log for everything that Kaden did including eating, playing with play-doh, coloring and story time. If he did it, I logged it.  

Kaden had his second evaluation and one of the evaluators began questioning us about Autism.  Autism had been in our minds but it was very hard to hear someone say it.  We went to our pediatrician and she was ready to refer us to a clinic in Sioux Falls that specializes in Autism—until I showed her my learning logs.  I told her what I had learned from them and she was 100% sure that Kaden did not have autism.  Spending time with Kaden she even thought that it was a possibility but after sharing the logs and how he had reacted to certain situations and environments she was certain that it was something else. 

She was right.  After comparing the logs to the food diaries we realized that Kaden’s worst days occurred on those in which he had products containing apples.  We are still on a quest to figure out exactly what is causing this and why, but we have been able to rule out a lot of possibilities and through carefully watching his diet he has been excelling in his speech and cognitive therapy, enjoys playing with other children, and has surpassed  his twin sister with his verbal skills!!

The change in him is defiantly amazing and I can only wonder where we would be right now had I not had that information and shared it with our doctor. 

 

Practicing what we preach (The laptop debate of '08)

Michael Steinbruck

April 8, 2008

I wanted to share with you all a success story that involves all of us and this listserv.  A couple people, including someone who is new both to the list and to The Learning Community contacted me and let me know that they were following the laptop thread closely and were truly impressed to see how we as a community were using the tools and person centered thinking so naturally and effortlessly throughout the discussion... practicing what we teach, successfully challenging ideas without challenging people... and all the while reflecting on our values and allowing them to guide us.  One of these people who is struggling with challenges with their own organization and is fighting off cynicism found this particularly helpful as an example of what is possible for changing the culture of organizations.  

Lord know we have our blemishes as a young and growing organization with limited financial resources and all of us volunteering what time we have to get so much done, but exchanges like these remind me and hopefully all of us of how talented and committed and truly exception we are... and how much potential exists for realizing our vision.  I for one am proud to be associated with you all and call you my friends.

 

A Break with the Boss

Newark woman spends unique day filming Springsteen music video

By BETSY PRICE, The News Journal (Delaware)

November 30, 2007

 

A camera-loving Newark woman with cerebral palsy recently spent a day filming at Orange Beach, N.J., for Bruce Springsteen's next music video.

Brigitte Hancharick was picked for the gig -- the video for Springsteen's song, "Girls in Their Summer Clothes" -- after her mother, Terry, heard a Heery Casting radio ad looking for area women from 15 to 80, with diversity.

"When they said 'diversity,' I wasn't sure they meant disabilities, but that was the first thing I thought, that it would be great for Brigitte," Terry said.

She wrote Heery and told them all about her daughter and her daughter's love of the camera. She even got her daughter-in-law, Karen Eller, to send some photos of Brigitte.

Almost immediately, she got a call back from the casting company, saying they were sending Brigitte's pictures to the director. Then the casting company called and said the director wanted to use Brigitte in the shoot.

The family was thrilled for Brigitte, 20. Her cerebral palsy is severe enough that she is nonverbal and visually impaired. She can't walk, but can stand with a lot of support.

"But she loves the camera," Terry said. "She's always loved having her picture taken."

Terry says she wrote the casting company because of a technique she's employed ever since attending a University of Delaware Center for Disabilities seminar a couple of years ago.

 

"It was one on person-centered planning," she explained. "From that I learned every day to ask two questions, and they are, 'What's important to Brigitte?' and 'What's important for Brigitte?' "

 

What's important for Brigitte is easy, Terry said. She has health care and daily care issues that have to be dealt with.

 

"But what's important to Brigitte is a little more difficult," Terry said. "After 21 years, I know how to read if she's happy and enjoys things, so I follow her lead on what she wants to do in life. For someone who is nonverbal, it's a little more difficult, but she's happy doing this kind of thing."

The family met the shooting crew the Sunday before Thanksgiving in Orange Beach, N.J., where they met with the assistant director and wardrobe director. The wardrobe director asked Brigitte to change into a blue shirt.

Out on the boardwalk, the crew blew some smoke behind her, and they played the "Girls in Their Summer Clothes" for Brigitte as they filmed.

"The smile never left her face," Terry said. "It was very cold on the boardwalk, and they had her in short sleeves. It didn't matter at all. She was happy."

The director then took the camera and sat close to Brigitte to do a lot of close-ups of her.

Brigitte was paid $150 for her afternoon's filming.

The video is due out in December, Terry said. The director promised to send her a copy of the video and of pictures taken during the filming.

Terry hopes to build her daughter a portfolio that she can use to get more work.

Finding things for people with severe disabilities that they really

like to do and that's available to them is difficult, especially as they get older," she says.

"Brigitte couldn't even do a typical job," Terry said. "But I think she could do modeling. I think she could do acting. They couldn't be verbal parts, but to have her out on TV and out in the public would be wonderful."

The daughter of Terry and Joe Hancharick, Brigitte is the only girl in the family of six children, who range in age from 6 to 31. They are Kevin and Adam Eller, and Joey, Ryan and Christian Hancharick.

Children with disabilities as severe as Brigitte's frequently didn't live into their 20s. Now more do, because of better medical care and better schools, Terry said.

But that can create problems, too.

Brigitte turns 21 in May. She'll lose her medical care at A.I. duPont Hospital for Children, where she's been a patient her whole life, and will have to travel to visit doctors in Philadelphia because of her complex orthopedic problems, her mother said. She also must leave John G. Leach School, which she's attended for 17 years, and most likely move on to the Adult Action Center in Newark, a new day program that's "person-centered," her mother said.

"As parents, we now just want to experience the joy in life that other young people experience as they go out into the world," Terry said.

"This video shoot has made us a little more hopeful that the world will be accepting and allow her to experience the joy of living a full life."

 

Teresa Kelley, Oregon

January 11, 2007

The Power of an Introduction

Last month I started an evening class for parents that have a young child (5 years old or younger) that's been labeled with a disability. They are a spunky group of Portlanders that make me love the place I live. Moms and Dads and me sitting in a big circle. I asked if we could introduce ourselves and the round began. One parent after another said their name and then "and I have a 5 year old son on the spectrum" or "and I have a 3 year old down syndrome". By the time the third person was introducing themselves I cringed a little when it came time to hear about their child. I was ignorant enough to believe that parents didn't talk like that.

I began talking about PCP and how the emphasis is on abilities and involving the right people isn't just about professionals. I got them started with a 'Like and Admire' brainstorm of their child and began to see some light bulbs. I then asked the parents if they wouldn't mind re-introducing their children, using the information they had just written down. It was powerful. There were even tears. Dads talked about their little princesses and moms talked about their little men. And these parents spent a moment relieved to just have children and talk about the child. Then one mom said, "I'm part of the problem." She went on to talk about how she has all these expectations for the professionals in her sons life, and she's introducing him as being on a spectrum. The parents left that evening excited; excited to be a part of the class and excited to go home to their son or daughter. 

Sue Henshaw, New Jersey

February 26, 2007

When we do home visits for our hotel respite program, our staff bring the information gathering sheets and ask those questions of families.  Hotel Respite is basically mini vacations at local hotels for individuals still living at home.  We do 15 week longs for 12 people and I think we're up to 30 weekends for 6 people.  Over 350 people attend our respites each year, many of them for the first time.

I recently did a home visit with a family of a 7 year old, who is actually at hotel respite right now.  This respite is the first time he has ever been away from home.  I didn't bring the information gathering sheets, as paperwork sometimes intimidates families, but I asked the questions.  What he liked to do, how he told us when he was unhappy, what kinds of food he liked, who were his favorite kind of people...  His dad said to me at some point, "How come you haven't asked what is wrong with him?"  I told him that a label really didn't tell me much but I could see from watching this boy that he was happy and very active.

His parents were surprised that I didn't use any labels.  And when they dropped him off yesterday, the staff person who was going to be with him this weekend simply said, "Wow, he has energy.  Does he like to swim?"

When the dad was leaving, he gave me a hug and said no one has ever seen his son's attributes.

Sue Henshaw, New Jersey

April 1, 2007

We had a weekend hotel respite this past weekend for four teens.  When our staff did home visits and asked information gathering questions, it was clear that all four liked shopping and books.

So we spent two hours in a Barnes and Nobles bookstore yesterday.   They walked through the store to look at books in different sections and  one of them told me most of the plots of the RL Stine books.  I asked him to help me find a book for my little 3 year old great niece.  He took me, by the hand, to the children's section and asked questions like, "Does she like animals?  Does she like words or pictures?"  And one of the girls went right to the sports section to find something about the Mets... I tried to steer her to college women's basketball books, but she told me, "Sue, baseball season started.  Basketball is in the winter.".........  I mentioned that since Rutgers women were playing in the semifinals for the NCAA championship last night, which they won.... One of the boys, who communicates in several different ways, language not being his first choice, went right to the animal section and looked until he found a book on pandas.  His mother told us when she picked him up that he has just recently been looking for pictures of pandas...

I share this because these four teens do not necessarily appear to be book lovers.  They were very, very active and bit loud but in the bookstore, they were quieter and also seemed to slow down a bit...  We discovered it only because we asked the right questions.

A Success in Progress
by P. Sue Kullen
February, 2001

I recently used the format of "What Makes Sense/ Doesn't Make Sense" to structure a problem-solving session for a young woman who moved from an institutional setting in Maryland into an agency home much closer to her family. I visited "D" a few weeks after she moved and she was happy to have moved, unhappy that she was struggling to be understood by new people, and terrified that her unhappiness meant that she might have to move back to the institution. I suggested that we conduct a problem-solving session to try and tease apart differing perspectives and bridge to action planning that would make a difference to "D." "D" agreed on a list of people who could come to a meeting and help her out. On the list were the people who knew her best from where she used to live.

We met a few weeks later and I had posted four sheets of poster paper around the room with headings of:

What Makes Sense and Works from "D's" perspective
What Makes Sense and Works from our perspective
What Does Not Make Sense and Does Not Work from "D's" perspective
What Does Not Make Sense and Does Not Work from our perspective

After a basic introduction and agreement on outcomes from the meeting, everyone in attendance was given a marker and asked to write on the pages. After a brief discussion of what was written, we narrowed on the two most immediate issues. We outlined things to try and were very specific with direct support staff of what was expected of them. We all agreed to meet in one month to discuss what we learned and how we can again chart some action. The Service Coordinator agreed to meet with direct support staff two times before the next meeting to make sure they were on target and to answer any questions they may have. We all posed for a picture with "D" and that was added to the notes for the meeting. "D" wanted to make sure that all of her friends saw the picture.

What Makes Sense/Doesn't Make Sense was a perfect way to structure the information gathered in such a way that was understood by all. It also allowed the different perspectives to be introduced in a non-threatening way. It was not about assigning blame, it was about listening and understanding, charting a course of action, and agreeing to get back together to reflect upon the new information and continue to work toward success for "D."

Moving Towards Unstuck
by Carol Blessing
Averill Park, New York
February, 2001

Not long ago I was asked to facilitate a conflict-resolution meeting between staff members of an agency and members of P's family. The differences revolved around the nature of supports each group felt P ought to have. It did not take long to recognize that what was unfolding was tug of war between which of P's most challenging behaviors proved whose point!

I used the "negative reputation" exercise as a tool to facilitate the group toward recognizing the strength of the gifts and capacities that P was exercising in trying to get everyone to listen to the things that were critical to everyday events in P's life. After spending an entire afternoon in exploring and discovering P's positive reputation, the group was able to identify key themes that appeared to motivate much of P's behavior.

We next used the communication chart as a tool to move from a theoretic base to an action plan that everyone could agree upon. Today, P's service coordinator uses the learning wheel to ask the 5 questions (What have we tried? What have we learned?) in relation to P's overarching themes when developing or reviewing the ISP. These tools were tremendous assets in moving a group of people from stuck to unstuck, but above and beyond that, the metamorphosis of P's reputation from a negative one to that of a person with admirable qualities served to reinforce why I do this work!

Kathy's Thoughts on Justine's Plan
by Justine's Mom

Justine and her sister are looking at a book together for the first time. Justine is 5 _ and six months ago, she was unable to sit down and look at a book. We didn't understand Justine's communication or why certain things bothered her. We didn't understand what made Justine tick.

We developed an essential lifestyle plan with Justine. As we developed the plan we learned:

Justine has her own way of communicating - and now we understand her

It is frustrating to Justine to understand what is being said, but to not be able to respond in a way others understand

If you know how to listen, Justine tells you what she wants

We know what is important to Justine: to have dignity, that people understanding what she is telling them

We learned how to make sure Justine is comfortable: she doesn't like bright lights or people who constantly asking: "What did you say?" or being wet at night

She wants to be a teacher-she likes to teach her little sister how to do things

This process has given us our daughter; it has given Justine a life!

Using Thoughts About My Life
by Jennifer Wyble

I have already used Thoughts About My Life and it has been well received by parents of children with disabilities and adults. Folks find it to be user friendly. There is a 14 year old I've used it with recently and it really generated great conversation with her and her mom. (This young lady is very shy.) She also took it to school and had the support of her teacher to fill it out, which was a pleasant surprise in this particular situation. We are in the process of developing this young lady's plan based on the use of "Listen to me" in combo with her completion of the "Thoughts" document. I will let you know how it goes. It's been exciting to use "Listen to me" and "Thoughts about my life" as a way to empower people to share "what's important to them" in a way that is NOT intimidating. Over and out from Jennifer of Kansas City.

A Message to Steve Sweet from Scotland

Dear Steve,

Just thought I'd let you know that I found the "Listen to me' material really useful for the national Scotland-wide project we are co-ordinating with families and the organisations that work with them.  We have been working with various parents groups on passports and thinking differently about how the information about their children can be gained and presented.

The project is called Family Futures and includes person centred planning training for parents, family members and professionals, planning, networks and family leadership development.

Thanks again,

Dawn Shield

 

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