TIP of the WEEK: The Importance of Training

We spent this past week with a visit from Dr. Jan Forster and Dr. Linda Gourash from the Pittsburg Partnership. Both Dr. Forster and Dr. Gourash are ongoing consultants for Latham Centers and their frequent visits are jam packed with direct individual consultations, site visits and staff training. Even the most seasoned staff members need to have the opportunity to learn, share their own knowledge and get updated on the most current best practices.

Training sets a standard for core competencies, allows a person to develop personally and professionally and allows an agency to set a level of optimal care standards for safety, health care, behavioral interventions and many other areas. The recent visit from Dr. Forster and Dr. Gourash gave our staff an opportunity to brainstorm and learn from their extensive experience working with children and adults diagnosed with PWS.

Submitted by:
Patrice Carroll

Pittsburgh, PWS and Latham

Sometimes our impressions of places we haven’t actually seen are formed by images from our childhood.  I had a vision of Pittsburgh that was far from complimentary; and I couldn’t have been more wrong!  Last week I had the good fortune to visit the city of three rivers and meet with staff at the Children’s Institute in Pittsburgh.  I found a committed team of professionals doing great work with their patients with Prader Willi Syndrome.  I look forward to a return visit to the Institute and extend an invitation to them to visit Latham Centers on Cape Cod.

Dr Janice Forster, our consultant on PWS, was kind enough to give me an insider’s tour of the city.  The weather was beautiful, neighborhoods, universities and downtown were thriving; the Phipps Conservatory was a wonder of orchids and gargoyles. This city, known for football and steel, is worth a visit for so much more.  Sitting at a restaurant on the north side with a dramatic view of this city surrounded on all sides by the rivers was breathtaking.  No wonder the people of Pittsburgh are so proud of their city. 

"I have an affection for a great city.  
I feel safe in the neighbourhood of man, 
and enjoy the sweet security of the streets."  

~Henry Wadsworth Longfellow

Related Posts:

News From the International Prader-Willi Conference

Rec and Exercise Group on the Move

Training Group Presents Progress

News From The International Prader-Willi Conference

Jonathan Smith, Director of Children’s Services, and Christine Gallant, Director of Training and Marketing, recently attended the International Prader Willi Conference in Herne, Germany. This international group of doctors and other practitioners from 17 countries met to develop standards and best practices for working with individuals with PWS. It is expected that we will have the proceedings of this event as well as last’s years conference by the end of the summer.

Dr. Janice Forster from the Pittsburgh Partnership chaired a group facilitated by Jonathan on the array of relationships that individuals with PWS have. Other groups met to discuss Environment, Self-Determination, and Behavior Management which were identified in last year’s conference of deserving a more in depth discussion. Christine and Jonathan then went on to Paris to meet with physicians and government officials, including the health advisor to the President of France, on the need for developing PWS specific programming for French citizens.

The photo is of Jonathan Smith standing in the courtyard of the Elysee palace after his meeting with Raphael Radanne, advisor to the President for health.

"Teamwork divides the task and multiplies the success."
~Author Unknown

PWS Diet News

Persons on the low fat PWS diet are most likely deficient in both omega 3 and omega 6 essential fatty acids. These nutrients have been reported to have beneficial effects on depression, dementia, immune function, diabetes, cardiac health and cancer. They also have a beneficial side effect of decreasing constipation. The most effective way to provide these supplements appears to be using a liquid preparation of fish oil (Omega -3) and plant seed oil (omega- 6). (Do not use cod liver oil!) When purchasing you should be looking for a high quality product purified by molecular distillation.

Thanks to Linda M. Gourash, MD and Janice L. Forster, MD from the Pittsburgh partnership for this information.

"Life is not merely to be alive, but to be well."
~Marcus Valerius Martial

From the Diet and Menu Group

The Diet and Menu group has met three times since Dr. Forster’s visit in February. We are currently working on upgrading the menu to make it more “user friendly” for both the staff and the individuals. We are also in the process of color coding the sheets, so that it is more apparent what types of foods the individuals are eating. This will assist the staff in preparing the meals, but can also be a teaching tool for the individuals in proper nutrition and eating a balanced diet.

Another goal of the group is to increase consistency in how the menu is used. Our next meeting is on April 21st in the kitchen of the former administration building. Please come and join us and share your ideas!

"The biggest room in the world is the room for improvement."
~Author Unknown

A Report From the Behavior Group

One of the biggest areas of concern when our group first met was the lack of sexual education for the PWS adults. This has been an issue we have discussed for a while and have consulted with both Dr. BJ Goff and Dr. Forster about. Both doctors agreed that sex education has to be handled very delicately since all that is taught will be put into practice by our clients, and many with PWS will not understand the potential consequences of those actions. It was decided that all sex education will be handled on an individual basis and will be dealt with as issues come up.

Prior to Dr. Forster’s visit this fall, there were a number of regular behavior problems in Children's Services. In order to address this more effectively, we put schedules up in the dorms and began planning lots of activities. The students rely on the schedules now. We have seen a dramatic decrease in anxiety for students since the consistency and predictability of their day is in a highly visible location. Our Adult Services staff also pays very close attention to the level of structure and has seen similar benefits.

Another area of concern was how to help our students and adults organize their rooms. After much discussion one of the staff from the Adult Program shared how they deal with this issue. He said, “When things start seeming crowded or overwhelming, staff go and help weed out and sort through the mess.” Children’s Services adopted this technique and staff worked together to weed out and neaten the boys rooms. When they returned from school they were told that every morning when they leave for school nothing should be on their floors. We did this a month and a half ago and their rooms are still looking as neat and clean as the day staff did the clean up.

"Part of courage is simple consistency." 
~Peggy Noonan

Recreation and Exercise Group on the Move

The Recreation and Exercise group presented information about activities to Dr. Forster on her last visit. In both adult and children services, we are attempting to schedule a wider variety of activities that are therapeutic for all involved. As a result of our initial meetings, members of the group have already sprung into action and are moving forward on their ideas.

Staff members scheduled arts and crafts activities and walks at various locations. One residence has combined long nature walks with photography that helps clients get exercise while enjoying this hobby. We have plans for puzzle nights, karaoke nights, and other group celebrations. We had a very successful St Patrick's Day party! There was music, dancing and everything green! It was a big hit!

With the spring finally up us on Cape Cod, we are looking at how to incorporate more walking, biking and outdoor enjoyment.

"Skipping is just jumping for joy, step after step."
~Jessi Lane Adams

Training Group Presents Progress

The Training Group presented their progress to date at a meeting with Dr. Janice Forster and Latham staff held at the Brewster Ladies Library on Wednesday April 1, 2009.

The Group has defined their goals as: Developing a training manual which will be a comprehensive approach to the treatment and management of Prader Willi Syndrome in children and adults. The group is working on methods for cross training adult and children services staff, methods for evaluating the effectiveness of the trainings, and methods for ensuring that training is delivered in a variety of formats and is continually updated with the latest research. Many trainings have been organized to date. The topics include:

• Sensory Integration
• The PWS Personality
• PWS - What providers and educators need to know
• Core Symptoms
• Medical and Psychiatric Management of PWS
• Behavior Management of PWS
• Educational Considerations
• Educational and Social Issues for Adolescents with PWS
• Transition from Adolescence to Adulthood
• Food Behavior and Beyond
• School Strategies for Success

Topics in development:

• Positive Behavior Support Plans
• Vocational Placements
• Healthy Relationships
• Life Span/Aging Issues

The Training Group meets monthly in the Clinical Director's office and are encouraged by the success so far.

"The great thing in the world 
is not so much where we stand, 
as in what direction we are moving." 
~Oliver Wendell Holmes

Facilities Group Looks at Smart Technology

Since this fall, the Facilities Action Group has been looking for ways to improve. On April 1st, we presented some of our findings to Dr. Janice Forster and the rest of the Latham community at the Brewster Ladies Library. The future at Latham is very exciting!

One of the main areas we have focused on is Smart Technology. Some of the technology we found were refrigerators with combinations, smart stoves that act as refrigerators, and new ovens that have incorporated technology that make them easier and safer to operate. There are locked Med boxes that have alarms to remind people to take their meds, advanced timers for lights, and improved temperature control devices for showers. We have looked at this technology for new construction and for implementation into existing residences. Along with all this technology, we have also discussed how to help substitute staff better operate in the homes. This includes new standardization for sub keys and info for subs coming into the house.

"Computing is not about computers any more. It is about living."
~Nicholas Negroponte

Dr. Forster Impressed With Continued Excellence

Latham has been working with Dr. Janice Forster to find new ways to improve upon our PWS programming. Following her visit this fall, Action Groups were created that focused on specific areas and looked at ways to fine tune what we are already doing. These groups are a mixture of adult and children’s staff, administators, supervisors, nursing and direct care staff. This is an all agency drive to excellence. There are five groups that are presently in existence and who meet bi-weekly to discuss the issue and strategize a plan for the future. The five groups are focused on training, recreation, diet, facilities and behavior.

On April 1, Dr. Forster returned to Latham to check on our progress during an all staff meeting held at the Brewster Ladies Library. Over this two hour meeting, the five groups were able to report on their individual progress and all of the Latham community was able to share in the general discussion. This was a very positive, vibrant meeting that left all who attended feeling refreshed, focused and intent on creating positive change. Look for reports from each of these groups in upcoming postings.

Pictured left to right: Anne McManus- Executive Director, Dr. Janice Forster, Jonathan Smith- Director of Children's Services, Jane Blum-Director of Nursing.

"Progress is the activity of today and the assurance of tomorrow."
~Ralph Waldo Emerson

Advice From Dr. Janice Forster...Quick & Easy Changes

One of the typical issues we face when working with children and adults with Prader-Willi Syndrome is the challenge of helping them keep their spaces and rooms neat. A quick fix for this problem may be the use of open storage containers and shelving. Dr. Forster pointed out that when items are “out of sight” they cease to exist for many of our students and adults. They need to see what they have so let’s assist them with organization by getting units that fit their needs. Resources for this type of storage are:

Crate & Barrel: www.crateandbarrel.com
Pottery Barn: www.potterybarn.com
Ikea: www.ikea.com

"Live simply that others might simply live."
~Elizabeth Seaton