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Susan Arwood and Nick Fillarelli share the life-changing experiences of Carl, Brad, and Marzia

Susan Arwood and Nick Fillarelli like telling stories, like those of Carl, Brad, and Marzia.  It is through these stories that they have shown their organization, the people they support and their families, and the state of Tennessee what can be done.

A self-described small agency in Johnson City, Tennessee, Core Services today supports 45 people with a staff of 120.  Susan Arwood is the Executive Director and Nick Fillarelli is the Program Director. Their journeys to Core Services came by different paths.  While Susan spent three decades in state government and Nick worked in a variety of agencies, things changed when they came together.

Susan and Nick took advantage of every person-centered training program offered.  They sent their entire management team through training, investing over $100,000 in training and development.  They found people that “got it” and helped those who did not find a new path. They worked to become accredited by CQL and decided they wanted to associate with people who wanted to improve, rather than resign to complaining about the status quo.  They found that moving away from negative conversations provided a boost in positive results. For example, they embraced the Home and Community-Based Services (HCBS) settings rule instead of fighting it. 

The result is a culture change in the organization that embraces opportunities for the betterment of the people they support.   What they discovered is that both the people they support as well as their staff are happier. Annual staff retention increased from 34% to 67%, and outcomes for people soared. So, when the state asked for agencies to volunteer for a special program to use technology to change people’s lives, Core Services jumped at the chance.

That brings us to Carl, Brad and Marzia.  Here are their stories.

Carl had been in a variety of residential settings and was never happy.  With an annual budget exceeding $160,000 per year, it was not a lack of resources.  What was missing was his dream. He wanted to live alone, in a trailer house, and decide who came to visit him and when.  With careful planning, the staff at Core Services worked with the state’s Enabling Technology Project to make his dream come true.  As a result, Carl now lives in a trailer park in his own mobile home, enjoying his independent life and developing friendships with people he can invite over.  With the careful and creative use of technology, he has support but only the amount he needs (and over time that has reduced). Carl has become a bit of a celebrity with a YouTube story produced about him with over 14,000 views on social media. Watch the two part-story here: Enabling Tech: Carl’s Own Home and One Month Later.

One Sunday, the doorbell camera revealed someone no one recognized coming to the door.  When they checked with Carl, he shared it was his neighbor who invited him to go to church with him — something they do now every week. And to top it all off, remember that Carl’s budget was over $160,000 a year when living with others? Using technology while also listening to Carl’s dreams, his budget is down to $43,000 a year.

Getting to that point did not come easily for everybody. The organization spent a lot of time with Carl and his staff determining how to make this happen. Despite concerns about him moving into his own place (because they cared so much about him!) everyone came together to build a better life for Carl.

Brad’s experience was not as easy as Carl’s.

Brad’s story has also been shared on YouTube. He had been receiving services with the support of others for two decades.  His family and staff were really hesitant and concerned about Brad living more independently. However, once they saw the success Carl experienced, and Brad learned about the options, there was no going back.

Using similar technology, they built a system of supports that matched Brad’s needs.  Brad does not communicate with words so they used an iPad with programs that allows him to communicate. 

One early problem was Brad staying up all night watching wrestling and then missing work.  They solved that with some sensors that reminded him it was time to go to bed. They are working to make sure Brad uses his bi-pap machine and even installed a medication dispenser that allows him to handle all of his own medications.

According to Nick, they expect the savings for Brad will be close to that for Carl, thus freeing up funds that can help others while supporting Brad’s wishes.

Now for Marzia’s story.

In her previous home, the washer and dryer were bolted to the floor, the windows were plexiglass, and everyone was on edge due to her behavior.  She had three stays a year in a special Behavior Support emergency support home the previous year. When there, she would often go for days without leaving her home. 

With the use of technology, and a focus on giving Marzia more control on the decisions about her life, she has moved to a new apartment, has a job and spends time without staff at night.  There is no plexiglass windows or bolted down furniture in her new living arrangement. She lives in a typical one-bedroom apartment. Her mother is very involved in her life, though initially there was a great deal of resistance.  Today, both Marzia and her mother love the change.

Susan and Nick believe that while they used to be thinking about designing good programs, now they are focusing on building good lives, thinking about people one by one.   There still needs to be more change in the state funding system and processes to support that change, but Tennessee is working on it. 

As for Core Services, they now have 120 staff, all dedicated to thinking about people.

Emphasizing this thinking from day one, the organization incorporates person-centered planning into new hire orientation (For more ideas on an effective orientation, fill out the contact form below to receive “17 Ways to Engage, Inspire, and Hire your New Hires”). They have built a big part of the curriculum to understand individual rights and include a two day training on person-centered planning focused on personal outcome measures.  iPads are provided to all staff for effective communication.

As a tangible reward to staff, pay has gone up $2.50 an hour, health insurance costs to the employee have remained stable, coverage for staff has not reduced, and they have instituted a 401k program.   In addition, they have initiated the NADSP Career Ladder with a 70-cent/hour increase tied to successful participation.

“One of our greatest lessons in all of this is we were over-supporting people.  We had to learn that by seeing success,” Nick said. Susan continued, “It made it easier to change by being a smaller agency – the bigger the boat it may be harder to turn around, but there is nothing we have done that a larger agency with more resources could not do – they have a lot more opportunity to make a change.”

In gaining the support of families, they feel strongly that their philosophy is key, and it is shared with families beginning with the first visit. If families and individuals agree, they will be a good fit.   Said Nick, “We have often found that the attitude and philosophy of the conservator/guardian is far more important to the success of the person than the complexities of the individual.” As a result, they work hard to ensure that current as well as new staff are clear about and support the philosophy across the organization. 

A bold move, and one that is making a huge difference to the people at Core Services. 

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