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Lending a Hand

bc law lend fellows

Nearly five decades ago, at the height of the civil rights movement, a group of medical professionals realized that few groups had been more consistently misunderstood, marginalized and mistreated than developmentally disabled children and their families. In an effort to foster future leaders who will care for this group and also advocate for their needs, an alliance of medical professionals created the "Leadership Education in Neurodevelopmental Disabilities (LEND)" Fellowship Program. Over the course of an extremely intense year filled with class work, clinical work and community service, Fellows are trained to develop public policy and design service programs for infants, children, adolescents and adults with, or at risk for neurodevelopment disabilities. The Program has grown steadily since its creation, and currently boasts 34 LEND chapters around the country. Each is stationed at a particular hospital so that LEND Fellows can maximize time spent with children and their families. The Boston chapter, anchored at Children’s Hospital, is one of the oldest and most active LEND chapters in the nation.

Until recently, LEND Fellows hailed from graduate programs dedicated to the provision of direct services in such disciplines as pediatric medicine and neurology; nursing; occupational, speech and physical therapy; and psychology. However, since health care and special education have become so heavily regulated by federal and state law, it became increasingly apparent that all Fellows needed to be better informed about the legal system. To fill this need, Dr. Alan Crocker, the head of the Children’s Hospital Boston LEND program and a revered national spokesperson for the disability movement, contacted Mary Ann Chirba-Martin, a BC Law professor specializing in health care law, about recruiting the program’s first law student in 2004. This is the first such union between a law school and the LEND Program in its near fifty-year history.

“Dr. Crocker realized that many of the children’s issues and many of the Program's objectives were becoming entangled with, or constrained by a variety of state and federal laws and regulations. These kids have a wide array of problems and consequently need a broad range of specialists to survive and, hopefully, thrive. In many cases, they need professional assistance in navigating the legal system because it frequently acts as a gateway to the medical and educational systems,” said Chirba-Martin. “Our students have been invaluable in helping other LEND Fellows understand the role of laws and regulations especially in the areas of disability and special education law, as well as more generalized issues like health law and access to government benefits.”

Chirba-Martin saw a perfect candidate for the position in Lara Zaroulis Mattina who was about to begin her third year at B.C. Law and had extensive experience in the areas of children’s rights and health law. Mattina, now a 2005 graduate, had such a positive experience, and proved to be such an asset to the LEND program that a second BC law student, Justin DiBiasio, was awarded a Fellowship this year. Despite the heavy demands of the Program, including supplemental academic coursework and hundreds of hours of community service, both Mattina and DiBiasio described the experience as a high point in their time at BC Law.

Fellows must attend weekly lectures by experts from various professional fields. Both Dr. Crocker and Professor Chirba-Martin serve as guest lecturers. DiBiasio characterized the classroom component as particularly rewarding because the sessions spark ongoing dialogue and foster collaboration between participants.

In addition to attending classroom meetings, each LEND fellow volunteers at the office of a local community group in order to put classroom concepts into immediate practice.

DiBiasio volunteers at the Latin American Health Institute, where he is observing how the staff assists their clients on special education issues. He has arranged staff training on special education law and securing public benefits like Supplemental Security Income and Medicaid.

Mattina served as a liaison between the Institute for Community Inclusion, a disability rights group, and the Cambodian Mutual Assistance Association, a community group that supports the fastest-growing ethnic group in the city of Lowell. In that role, she developed a tutoring program for Cambodian youth in a GED program, an experience she called “incredibly empowering and fascinating.” She acknowledged that nothing in law school quite matched it. “I had a chance to be part of an interdisciplinary team…who are the backbone and the future of advocacy for children with special health care needs,” she said.

Each January, fellows attend LEND's national conference in Washington D.C., which seeks to raise awareness of the Program’s mission among Congress and federal agencies. This year, DiBiasio and his colleagues spent two days lobbying legislators on Capital Hill to consider the implication of health care, education, and public safety legislation upon an often forgotten subset of the population. In the wake of Hurricane Katrina, many cities, including Boston, have been pressured to draft emergency evacuation plans. A new bill proposed by Rep. Jim Langevin's (D-RI) bill H.R. 4704 encouraged legislators to learn from the mistakes of Katrina and accommodate the needs of people with disabilities within these proposals. DiBiasio encouraged senators from Massachusetts and Rhode Island to lend the bill their support. “All of the senators we spoke to were sympathetic to what we were saying, and have been sympathetic in the past,” he said. “In a way, this was more about saying ‘thank you for your help’ than about fighting for their attention.”

DiBiasio observed that many Fellows have a personal connection to someone with a disability that sparked their initial interest in LEND. DiBiasio, for example, grew up with three adopted sisters who have neurodevelopment disabilities. In order for the movement to truly take off, he emphasized, it is critical that people outside of the disability movement become involved as well. “For example, someone with a general interest in health law could learn so much from such a rare experience. Studying this segment of the population raises all kinds of broader issues regarding issues about health care and education,” he said.

Having a wide array of professional specialties in the Program enables participants to pool their knowledge in designing meaningful solutions. “Everyone shares based on his or her respective fields,” DiBiasio said. “Coming in with a legal perspective, I think I’m able to give back in a unique way. I can explain the legal reasons for why problems exist as well as the legal considerations which must inform policy and programmatic responses to those problems.” Thus, by helping other Fellows understand applicable laws and regulations, Lara, Justin and their successors play a vital role in achieving LEND's core objective of ensuring that future leaders genuinely understand how truly effective solutions must be more than just scientifically supported, economically viable and politically palatable. They must be legally sound.