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, even though I do question any organization that would have me as a member.

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.

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