Coordinating Care for Children with Disabilities - Leadership Education in Neuro-developmental and Related Disabilities

Introduction

Main Digest

Sue Howard, 55, says it's hard being an older, single mother.

But it's even harder when one's child has special needs.

"My son Ethan has cerebral palsy," says the West Chester resident, speaking of her 14-year-old son. "I have a really tough job. It's like still having a toddler. But obviously, it's worth it."

About three years ago, Howard signed up to be a parent mentor for a Cincinnati Children's Hospital Medical Center-based training program called Leadership Education in Neuro-developmental and related Disabilities ( LEND ), in order to share her experiences with up-and-coming health care professionals who would encounter patients like Ethan in the field.

"This is a chance to show students and future professionals what life is like from my perspective," she says. "There's much more to life than what one sees in the clinic. With this chance, we were able to open our home so that these students could learn some of the issues families may go through on a typical day and see what the home environment looks like."

LEND, an interdisciplinary leadership training program funded by the federal Maternal and Child Health Bureau, is based in the Cincinnati Children's division of developmental and behavioral pediatrics and works in close partnership with UC's colleges of allied health sciences, nursing and education, criminal justice and human services as well as with the departments of public health sciences and psychology.

Its goal is to train future health leaders to improve the care of children and adolescents with or at risk for developmental disabilities, like autism or cerebral palsy, and other special health care needs, like attention deficit disorder, placing an emphasis on developing family-centered, culturally competent interdisciplinary leadership skills.

Recently, LEND received five years of additional funding from the bureau which is part of the federal Health Resources and Services Administration. Funding, starting in July 2011, will total $4.5 million and will support the overall organization and implementation of the program.

"We are very excited about the renewal of this grant which will support our overall goal: to create leaders who will generate change and advocate on behalf of children with disabilities and their families," says Karen Edwards, MD, who serves as director of the program.

Program Provides Hands-On Training in the Field

Edwards, who joined Cincinnati Children's in 2010, says the LEND program provides graduate and postgraduate level training for leadership roles in working with and on behalf of children with disabilities and their families. Additional components of the LEND Program provide continuing education, community education and technical assistance.

"We have one of the oldest LEND programs in the country," Edwards says, adding that there are 39 LEND programs nationwide. "The bottom line is that we are trying to improve health outcomes. We have 20 to 25 LEND trainees each year, most of whom are concurrently earning a master's or doctoral degree in a health or education discipline, or are doing postdoctoral work. We also have trainees who are parents or family members of children with developmental disabilities who want to take on a leadership role in advocacy and policy." Edwards says in 2011, there were 11 family-member LEND applicants.

In the program, which runs mid-September through early June, trainees participate in a leadership training seminar, core curriculum sessions that focus on developmental disabilities, interdisciplinary and disciplinary clinical sessions, team projects in evidence-based methods and leadership projects that explore community-based resources.

Each year, a number of LEND trainees attend the National Disability Policy Seminar in Washington, D.C., to better understand disability policy and to speak with legislators and staffers about issues of importance to people with disabilities and their families.

"Six LEND trainees attended the seminar this year," says Edwards. "In addition, five trainees attended a legislative advocacy day in Columbus to hear from state policymakers and from people with disabilities about legislative issues."

Also, as Howard experienced, every LEND trainee is paired with a family of a child with special needs for the Family Mentoring Project. During this project, trainees meet regularly with families in their homes and in the community to learn about the family experience of having a child with a disability.

"This helps trainees to truly see what families experience and helps them in treating the patients and their families as a whole," Howard says, adding that trainees receive a well-rounded experience and not only learn more about families but also others' roles in the field.

Edwards agrees.

"The best care for children with disabilities is interdisciplinary care," she says. "The interdisciplinary nature of this training helps participants understand how the other disciplines work, breaking down the barriers in the care of the patient; the second part of the training promotes their role as leaders, giving them the skills to be influential in clinical, academic and policy/advocacy settings.

"We've seen former LEND trainees go on to become leaders both locally and throughout the state."

Former Trainee Hopes to Raise Awareness for Autism

Tonia Jones, 39, hopes to be one of those.

Jones received her graduate degree from UC's College of Nursing in June and completed the LEND program.

"I worked as a staff nurse at Good Samaritan Hospital and felt like I needed to do more," she says. "I worked in labor and delivery but really had an interest in autism."

Jones says that more children are being diagnosed with autism each year, and she wanted to know more about this trend.

"I didn't feel like I knew enough about it, and I wanted to know why this is occurring, who it is affecting and the resources available to families that have children with autism," she says. "In LEND, I was able to see a wide spectrum of ways children with autism are impacted. It was pretty amazing, and I really hope to work with these kids in some capacity and possibly work on a higher level to advocate for this group of kids."

Jones says her most valuable experience was working with special needs children and their families in a clinical setting.

"I was able to see the struggles that may affect care for the child," she says. "It's important to provide holistic care for the child and their families. I want to be able to pass resources onto families who may not know that they exist, so that the child can function and be as independent as possible in society.

"It's important to see how other clinicians work and collaborate with other health care providers to streamline care for the best outcomes. Many of these children see multiple specialists in one day. Coordination can make a world of difference."

"All families have different issues, and it's good to show these care providers how we live and some of the restrictions we have and issues we face," Howard adds. "I appreciate the LEND program because it's helping families like ours and patients like Ethan receive the best care possible."

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