Posted on April 8, 2024
Julia Quarles is gaining valuable experience using her tablet, which her mother Janice purchased for her last March as a tool to support her passion for books and reading.
Julia Quarles loves to read. You’ll seldom find her without a book, magazine or, more recently, a tablet and C-Pen Reader in her hands — assistive reading technology that is opening up a whole new world for the Baltimore County native, and giving her the added tools and confidence to voice her needs, goals, and desires.
As her mother Janice Mackel said, “with technology, everything is a help” for her 41-year-old daughter who has autism and communicates minimally verbally.
A Person-centered approach
Giving Julia the confidence to express her wants and wishes is at the heart of Penn-Mar’s Person-Centered Initiative (PCI), which was formally launched in July of 2022, and is a model approach to services that moves away from the long-established “caregiver” mentality to one of a “supporter.” In other words, from what staff, families, and service coordinators do or think is best for an individual receiving services, to enabling and supporting a person to independently do and express what they think is best for themselves.
As Penn-Mar’s President and CEO Greg Miller recently put it: “Empowering the people we support to live a person-centered life is really to help them do what all of us do every day. We make decisions about our own lives based on our experiences, values, and the influence of the people we surround ourselves with. It shouldn’t be any different for people with disabilities.”
After graduating from high school in 2003, and a tireless search by Janice for the right program, Julia came to Change, Inc, which merged with Penn-Mar in 2019. Since the merger, Julia has been receiving Community Development Services (CDS) through Penn-Mar’s Day Learning program. CDS is a community-based service that provides real-world experiences, learning opportunities, and interactions in small peer group settings through engagement with one’s community.
Community-based services work hand-in-hand with a person-centered approach in supporting outcomes for people like Julia; outcomes that are both important for them and to them. To discover what was important to Julia, Penn-Mar utilized the person-centered discovery tool called Personal Outcome Measures® (POMs) to explore her quality-of-life areas involving choices, relationships, rights, goals, dreams, and more, as well as the supports needed to help her pursue and attain them.
The extensive POMs Interview, used to create a Person-Centered Plan (PCP), was developed by the Maryland-based Council on Quality and Leadership (CQL), an organization that has spent the last 50 years identifying, defining, and researching aspects of human life regarding people who live with disabilities.
According to Penn-Mar Quality Coordinator Kathy Zeallor, who worked with Julia to create her annual PCP, POMs is now part of the Maryland Developmental Disabilities Administration’s policy and practice of the service-planning and delivery system.
“We begin the POMs interviews months in advance of developing a PCP,” said Kathy. “What was reinforced over the course of the interviews with Julia was how important books are to her, which became part of her plan. Along with the tablet and sound books Janice had purchased for Julia, we were able to get funding to buy her a C-Pen Reader, an additional tool to support her reading.”
The C-Pen Reader is one of the recent assistive tech tools that Julia has begun to use to help her with reading. Photo courtesy of cpen.com
The C-Pen is a small, lightweight, handheld device designed to assist with reading and scanning printed text. It features a built-in display screen and speaker. Julia got her C-Pen a few months ago and has been gradually getting used to it.
“Reading is Julia’s strongest interest. It’s been her top priority for quite a while,” said Janice, Julia’s biggest champion, who was by her side for all the POMs interviews. “With these tools, the goal is to help her build her vocabulary and comprehension, which is her major challenge.”
Employing the Three Es
To support Julia and others in making informed choices to live a person-centered life based on their outcomes and goals, Penn-Mar has integrated the Three Es – Education, Experience and Exposure. The Three Es play a role in everyone’s life since we all make choices all the time. For Julia and her love of reading it means making choices about the kinds of books she wants to read or buy, or when she wants to read. It means learning how to use assistive tech, and gaining experience with the apps on her tablet, like pulling up her favorite music on YouTube.
In the months since implementing her person-centered plan and getting her tablet and C-Pen, Janice, Kathy, and the team at Penn-Mar have seen an improvement in her reading ability and an increase in her vocabulary.
It’s been said that success is the sum of many small victories. As Julia works on her goals, she’s racking up a small victory each day, empowering her to be more independent and to live her best life.