You’re new to the U.S. and know hardly anyone. You have a child on the autism spectrum – a neurological difference that is entirely new to you – who is learning to communicate and learning English with you. You learn that you are entitled to receive educational and therapeutic services, and you are thrust into a complicated network of information, providers, and paperwork. If you’re lucky, you’re reading translated materials that don’t adequately explain complex concepts and systems that you need to understand. You meet with service providers who, while professional and courteous, may interact with you and your family in ways that leave you feeling confused and, often, uncomfortable. And the services you do receive, limited as they are by a system with already strained resources, can’t fully appreciate your strengths or your limitations. You feel stuck and alone in a tangle of bureaucracy.
This is the scenario that dozens of families in the Greater Philadelphia area, and hundreds elsewhere, experience regularly. It’s one that Anna Perng, a Chinatown resident, and former Obama Administration appointee, decided to address after navigating the system with her husband and two autistic children. And it’s a scenario that Temple faculty hope to eradicate while at the same time inspiring a model for student clinical opportunities across the College of Public Health.
With backing from the Philadelphia Autism Project’s SEED Money grant program, Perng began organizing monthly workshops with Chinatown Medical Services, Elwyn, and Chinatown Learning Center, connecting community members with therapists, social workers, and other experts to help them understand their rights, their kids’ disabilities, and how to get through the choppy waters of procedure and protocol.
Lost in the Shuffle
“Whether it’s the school system or the health system, these families are getting lost in the shuffle because of cultural and linguistic differences,” says Roger Ideishi, an associate professor of occupational therapy at the College of Public Health. Yet, he notes, despite the best efforts of providers, the infrastructure simply isn’t set up to meet all these needs. “There’s a lot of miscommunication and misinterpretation, and these families are just feeling totally lost,” he says.
Through the Philadelphia Autism Project inclusion workgroup, Perng crossed paths with Ideishi – and found an ideal counterpart. For more than 30 years, Ideishi – who holds degrees in both occupational therapy and law – has made inclusion his mission. As a consultant, he’s helped organizations including the John F. Kennedy Center for Performing Arts, the Smithsonian Institution, the city of Flint, Michigan, the Pittsburgh Symphony, Philadelphia Orchestra, and the Academy of Natural develop meaningful programming for children with cognitive disabilities.
His work complemented her political knowledge and skill: In addition to her work with the White House, since 2015 Perng has been serving a two-year term as commissioner on the Governor’s Advisory Commission on Asian Pacific American Affairs, and recently became a volunteer fellows manager for the progressive group Organizing for Action. As a pair, Perng and Ideishi presented a formidable force for inclusion.
Ideishi started to bring Temple occupational therapy students to the workshops to interact with the children while their parents were learning. “Rather than just babysit, these students could structure directed play experiences because they understand some of the children’s needs,” Ideishi says.
In between workshops, students showed parents how to implement some of those same strategies at home.
From Grassroots to Grant Funding
Soon he and Perng recognized the opportunity in front of them. What if they could organize teams of clinical professionals and students to address these issues comprehensively and build a future workforce equipped to handle them?
Perng put the wheels in motion, testifying before Philadelphia City Council and participating in a workgroup with the Pennsylvania Department of Human Services Office of Developmental Programs and the Pennsylvania Office of Child Development and Early Learning. She spoke the commonwealth’s Department of Education Bureau of Special Education and spoke with Secretary Pedro Rivera.
Meanwhile, Ideishi mobilized his colleagues in the departments of Physical Therapy and Communication Sciences and Disorders and in the College of Public Health Dean’s Office to coordinate efforts and secure funding. The reward for all their work came in September 2016, when the initiative received a $150,000 grant from the Pennsylvania Department of Education to identify the most common and important challenges and barriers these families face when accessing services, create programs to meet those needs, and evaluate their efforts.
Today those workshops are part of the Cultural and Linguistic Diversity Initiative, a program to provide linguistic and cultural translation, education, and strategies for bringing classroom and health interventions into homes. Monthly workshop attendance is up to about 50, with about 10 families currently receiving ongoing support. Each semester the interdisciplinary program brings in six to 12 graduate students from occupational therapy, physical therapy, communication science, public health, and school psychology.
In recognition of their efforts to promote inclusion in the community, Perng, Ideishi, and their core group of volunteers are being honored by the Philadelphia 76ers during their Autism Awareness Night April 4. “The disability community has always fought for a seat at the table. Throughout history, people with disabilities have said, ‘Nothing about us, without us.’ Yet, in practice, nondisabled researchers and ‘experts’ create spaces where diverse people with disabilities and their families are not expected to participate as stakeholders,” Perng says.
“We want research that identifies ways to promote inclusion that is appropriate for each individual and how systems can focus less on paperwork and more on our overall quality of life. This project does that.” “This grant allows us to pull in community advocates and translators to work directly with the family to help fill in those gaps,” Ideishi says. “And it’s a great opportunity for Temple students to understand cultural sensitivities, to prepare a workforce that understands how to navigate cultural situations more effectively.”
Education by Engagement
The multidisciplinary aspect of the initiative is a big payoff for students as well.
“They are fabulously committed,” says Alice Hausman, director of the college’s Office of Practice and Engagement, who is helping to steer student involvement. “When they meet in workshops, it’s exactly what you want to have happen: They reflect on each other’s disciplines and problem-solve. They’re all teaching each other. My dream is to make this an ongoing clinical opportunity for students. We’re trying to use this as a stepping-off point.”
Hausman dreams of modeling student clinical opportunities on this initiative. “I think this is how our agenda should be driven. The priorities really should [be determined by the needs of] our community partners, and this is the perfect example of that,” she says.