Vanderbilt Kennedy Center launches new research program on families

Vanderbilt Kennedy Center launches new research program on families

Life for 40-year-old Kevin Souza couldn’t get much better. A rewarding job, a close circle of friends, a tidy new home within walking distance of San Francisco Bay — along with his life partner and their toddler son, Kevin was settling in for the long haul. Nothing but blue skies ahead.

Then came the phone call. It was an old family friend in Tennessee, calling to say he and his wife could no longer care for Kevin’s older brother. Wilford, who has Down syndrome, had come to stay with the couple after a series of unfortunate incidents.

The summer before, Kevin’s mother died suddenly. As Wilford and his father struggled to adjust to the loss of their anchor, Mr. Souza’s long battle with diabetes took a downward turn. Facing amputation of his toes and the possibility of losing his feet, he was forced to move into an assisted living facility. Abruptly, Wilford was left homeless.

The time Kevin knew would come eventually was here — only sooner and with less warning than he expected. Kevin was now his brother’s primary caregiver, and over the coming weeks, his ordered life would be seriously threatened by the stress of assimilating his brother into the family mix.

This scenario stands to be repeated over and over again in the lives of thousands of baby boomer siblings of adults with developmental disabilities. Currently in the United States, more than a half million adults with disabilities are 60 years or older, and that number is expected to triple — to more than 1.5 million — by 2030. Since the majority of these adults live at home and are cared for by aging parents, the sisters and brothers of these individuals are the assumed future caregivers. Yet, the needs of these adult siblings have so far remained largely unexamined.

This emerging field of study — how relationships in families are affected by having a child with a developmental disability in their midst, especially sibling relationships — is at the heart of a new research program at the Vanderbilt Kennedy Center for Research on Human Development.

“Families is not really a new research area at the Kennedy Center — we’ve always had family-based research going on,” said Ann P. Kaiser, Ph.D., professor of Special Education and Psychology and director of the Program on Families. “What’s different, I think, is that this year we made the conscious decision to actively pursue an interdisciplinary, cutting-edge approach to research that focuses particularly on siblings of children who have disabilities.”

The program will emphasize longitudinal studies that extend over the lifespan of siblings. The research will also be unique in being positively oriented toward healthy outcomes for the children, rather than focusing on the down side of being the sibling or parent of a child with a disability.

“Keep in mind that there are at least 10-15 laboratories across the University that are doing research related to family issues, whether it’s sibling research or genetics or behavior,” said Pat R. Levitt, Ph.D., director of the Vanderbilt Kennedy Center. “The idea is to use this program as a point of convergence for investigators on campus, an organized unit that can provide resources for seed grants, for example, or to attract post-doctoral fellows.”

The impetus for creating the program came, Kaiser said, from an infusion of new energy that occurred over the summer. The recruitment of husband and wife team Elisabeth M. Dykens, Ph.D. and Robert M. Hodapp, Ph.D. from UCLA provided the initial spark. Both researchers have an interest in parenting and other issues pertinent to families with a child having a genetic disorder, such as Down syndrome or Williams syndrome.

Dykens was involved in starting a family resource center at UCLA that was funded by the Lili Claire Foundation, an organization founded by Keith Resnick to honor the memory of his daughter who had Williams syndrome, a neurogenetic disorder that results in serious physical problems as well as mild to severe mental retardation.

When Resnick learned Dykens was moving to Nashville, he offered financial support to launch a center here. With remarkable speed, the Vanderbilt Kennedy Center organized its resources and three months later, the Family Outreach Center at 1810 Edgehill Avenue opened its doors. The center offers a range of support services, from the Disabilities Pathfinder program linking families to statewide services to a Behavioral Analysis Clinic to a Reading Clinic.

At the same time that discussions with Resnick were progressing, Kaiser, Dykens, and Hodapp organized a meeting of national experts in family research. They invited six multi-disciplinary investigators — from behavioralists to geneticists — to join them and other Kennedy Center investigators for a brainstorming session at Vanderbilt in July.

Out of the meeting came the germ of the idea: They realized that each had interesting, but limited, data on sibling relationships. Kaiser came away with an initial agenda for the research program and a sense that Vanderbilt could be a leader in this nascent field.

“A lot of our investigators whose primary area is something else — pediatrics or genetics, for example — have always had a family focus to their research,” she said. “Genetics will be a natural partner for us because, in some ways, studying siblings is the ideal way to look at genetic and environmental contribution, since the risk of a sibling having the same genes is 50 percent and they’ve grown up in the same environment.”

Some projects are already ongoing. Wendy Stone, Ph.D. in Pediatrics has a new grant with Paul Yoder, Ph.D. in Special Education to look at the status of younger siblings of children with autism, particularly to detect early behavior and language problems. And sibling studies are pivotal to investigations of the genetic basis of autism being done by Jonathan Haines, Ph.D. and Jim Sutcliffe, Ph.D. in Molecular Physiology and Biophysics.

Kaiser expects a pilot longitudinal study of relationships among siblings of various ages to begin this fall. The collaborative effort comes from the laboratories of Kaiser, Hodapp, and Terry Hancock, Ph.D., research associate professor of Special Education. Kaiser and Hancock have worked shoulder to shoulder in their research on families for the last 15 years, focusing largely on parenting and communication in families having a child with a disability.

“Sibling relationships turn out to be perhaps our most enduring relationships in life,” said Kaiser. “And in the case of children with disabilities, the relationship between a typical sib and a sibling with a disability may be the most important caregiving relationship in the adult life of both of those siblings.”

The lives of Kevin Souza and his brother Wilford have become more manageable now, thanks to strong mental retardation advocacy programs in California. Wilford recently moved into an apartment with four other special needs adults, and five days a week he makes his own way, using the public transportation train system, to his new job.

Daily phone conversations help both brothers grow comfortable with Wilford’s new life of independence. The weave of their relationship, so close during childhood, has loosened over the years, but the fabric is still strong. Traversing this new phase of their lives, they will no doubt face many challenges. But they will face them together.

Center fosters caring society

When Pat R. Levitt, Ph.D. took the reins as director of the Vanderbilt Kennedy Center for Research on Human Development last year, the core mission of the center was the same as when it was founded 37 years earlier. The shape and scope of the center, on the other hand, had changed — and is still changing — in significant ways.

The center was created in 1965 at George Peabody College for Teachers, equally the product of a national vision led by President John F. Kennedy to “make the remote reaches of the mind accessible” and a Peabody College vision to conduct research on development and developmental disabilities to engender, as founding director Nicholas Hobbs said, “a competent and caring society.”

The Center was a natural outgrowth of Peabody College’s history of research and training programs in mental retardation and the behavioral sciences. A grant from the Joseph P. Kennedy, Jr. Foundation in 1962 helped establish specialized competence in mental retardation research at Peabody by funding a visiting professor program.

The John F. Kennedy Center for Research on Education and Human Development, as it was called at its inception, was one of the original 12 national Mental Retardation Research Centers established by the National Institute of Child Health and Human Development. The NICHD has funded the center continuously since.

The 1979 merger of George Peabody College for Teachers with Vanderbilt University brought into Vanderbilt’s fold a professional college of education and human development. For the Kennedy Center, the merger boosted the efforts of its investigators who had for years been making collaborative forays into linking behavior to biology. The next two decades saw the steady expansion of neuroscience research within the Kennedy Center and the growth of multi-disciplinary biological and behavioral research programs.

With the decision of Vanderbilt leadership in 2001 to make the Kennedy Center trans-institutional, the interdisciplinary power of the center was extended to include Vanderbilt University Medical Center. This watershed event in the center’s history provided unprecedented university-wide support of the core mission and opened new doors to innovative collaboration that has proved to be transformative.

Today, more than 120 faculty members participate in the center; they represent 17 departments in Medicine, Peabody, Arts & Science, Nursing and Engineering.

Since coming to the Vanderbilt Kennedy Center, as it is now called, Levitt has put into motion a strategic plan to better integrate research programs of faculty with common interests — and complementary methodologies — in addressing bio-behavioral and biological questions.

“We are now just beginning to understand the inextricable relationships between behavioral and cognitive functions, and the underlying neurodevelopmental basis for disabilities,” said Levitt. “Those centers that are prepared to support and encourage multidisciplinary research will be in a better position to do that special experiment that could make a difference.”

The Vanderbilt Kennedy Center is one of now 14 Mental Retardation Research Centers in this country, each of which is located within a premier research university, many in association with a major medical center.

Although significant resources are devoted to basic studies fundamental to biological and behavioral processes, the Vanderbilt Kennedy Center is also keenly aware of and invested in seeking solutions to the practical issues and problems experienced by individuals with developmental disabilities and their families. The scope of the goal is ambitious, but it’s one Levitt and the others at the center are committed to attaining — day by day, week by week, and year by year.

Family Outreach Center offers support

Disability services often seem fragmented and difficult for families to access.

That’s why the Vanderbilt Kennedy Family Outreach Center provides families with a single point of entry into the research programs and clinical services of Vanderbilt University and the Vanderbilt Kennedy Center for Research on Human Development. Developed in partnership with the Lili Claire Foundation, the center offers wide-ranging support for children and adults with disabilities, and for their family members.

“If they need to know what service or research programs are out there, whether at Vanderbilt or elsewhere, or if they just want to hook up with other families, this is the place where they can come,” said Elise McMillan, J.D., director of Community Outreach. “It’s really a front door to the Kennedy Center for families and individuals with disabilities.”

Located at 1810 Edgehill Ave., just across from the Kennedy Center and only a few minutes from Vanderbilt Children’s Hospital, the newly renovated building offers an intimate setting and easy accessibility, with the added convenience of an adjoining parking lot.

“By the first of the new year, we will have in place a social worker who will also have space in the Junior League Family Resource Center at the new Children’s Hospital when it opens,” said McMillan. “Having a presence in both places will mean even greater access and service for families.”

The programs already in operation at the building at 1810 Edgehill Ave. include:

•Reading Clinic — Provides one-on-one, individualized tutoring using proven assessment and instructional methods, primarily for elementary school ages. For more information, call 936-5123.

•Behavior Analysis Clinic — Serving adults initially, with plans to expand service to children, this clinic offers comprehensive assessment of an individual’s medical, educational, and behavioral needs by a team of professionals from Special Education at Peabody, Nursing, and Psychiatry. For more information, call 322-8185.

•Disability Pathfinder Program — A comprehensive information and referral service for local, state, and national disability resources, with special services available for non-English-speaking Hispanic families. The staff answered about 4,000 calls last year, serving more than 1,300 individuals and families. A database of more than 1,600 agencies is continually updated by the staff and is available by calling the office at 322-8529 or by visiting www.familypathfinder.org.

“We’re starting them here now, but our plan is to grow the programs out into the community,” McMillan said. “We realize that as accessible as we are, there are still families who may not be able to make it into our clinics.”

The Vanderbilt Kennedy Family Outreach Center is directed by Elisabeth M. Dykens, Ph.D. The center will host two Friday open houses, Nov. 7 and Dec. 5 from 9 to 10 a.m. For more information about the center, contact Elise McMillan at 343-2540 or at elise.mcmillan@vanderbilt.edu.