This past July, Dr. Jim Bodfish became the new Director of

the Center for Development and Learning (CDL). He be-

comes the 4th director of the CDL following Dr. Harrie

Chamberlin who was the founding director and served

from 1962 until his retirement in 1984, Dr. Mel Levine who

served as director from 1984 until his retirement in 2006,

and Dr. Greg Olley who served as interim director from

2006 until 2008.

Dr. Bodfish is a psychologist who specializes in the integration of behavioral and

medical treatments for children and adults with developmental disabilities. He

has worked in home, preschool, school, clinic, hospital, and residential settings

and comes to the CDL with 25 years of clinical, research, training, and administra-

tive experience – all in the field of developmental disabilities. He received his

Ph.D. in Psychology from the University of Alabama with a specialization in devel-

opmental disabilities and completed a post-doctoral fellowship in Behavioral

Neurology at the Kennedy-Shriver Center for Mental Retardation. He is a Profes-

Leadership Education in Early Identification and Management of Congenital Hearing Loss

Welcome to the New CDL Director Newsletter Highlights

Understanding Potential of Children

with Krabbe Disease

2

Our line to Online 2

Autism Programs 3

Literature Review 3

From the Desk of the Director 4

Projects In Brief 7

A new grant, based at CDL, will provide leadership edu-

cation and technical assistance related to early identifica-

tion and management of hearing loss in infants and

young children. Funding for the five-year grant will be

provided by the U.S. Maternal and Child Health Bureau

(MCHB), a branch of the Health Resources and Services

Administration in the U.S. Department of Health and

Human Services.

The project will be directed by Jackson Roush, Ph.D., an

audiologist and faculty member in the Division of

Speech and Hearing Sciences, who serves as CDL’s Sec-

Fall 2008

At the Center for Development and Learning, we support individuals with disabilities and

their families by:

Identifying and applying innovative solu-tions to complex issues using an interdis-ciplinary approach

Promoting self-advocacy, leadership, and inclusion by and for individuals with dis-abilities

Training world-class leaders and experts in the field of developmental disabilities

Studying best practices and translating research into practical applications

Continued on page 6

Continued on page 5

A newborn infant under-

goes a hearing screening

procedure in the well-baby

nursery using an auto-

mated form of the auditory

brainstem response

"Under the leadership of Maria Escolar M.D., the Program for Neurodevelopmental Function in Rare Disorders (NFRD) is be-ing recognized nationally and internationally as an example of clinical excellence in research, training and service to families of children with these devastating disorders. The very nature of a rare disorder means that many doctors do not have experi-ence with evaluation or management of these diseases and, therefore, are not able to provide the level of care that the NFRD team can. An example of recognition in research is Dr. Escolar's newly funded project by the National Institutes of Health (NIH) that uses new technological advances in brain imaging to learn about early brain development in children with Krabbe disease. Krabbe disease is a rapidly progressive neurodegenerative dis-ease that presents before 6 months of age and progresses to death within the first 2-3 years of life. In collaboration with Duke, Dr. Escolar has found that umbilical cord blood trans-plantation can be used to save the lives of these children. Ulti-mately, she is interested in describing whether the characteris-tics of certain brain structures can be used as biomarkers of disease progression for babies with Krabbe disease picked up through newborn screening. These babies will benefit from treatment with umbilical cord blood transplantation only if treated before symptoms develop.

Our Line to Online

Fall 2008

Page 2

Parent, psychologist, Clinical Scientist, and author, Keath Low often collabo-rates with CDL faculty members to write articles for many prominent websites, including iParenting.com, About.com, Supernanny.com, the Huggies Baby Net-work site, and the Early Childhood Initia-tive Foundation’s Teach More/Love More

site. With 150 articles currently available online, Keath’s top-ics range from sleep deprivation in teenagers— to under-standing ADD/ADHD— to improving communication with your children. One article recently published on the Huggies Baby Network, entitled “Top Toys for Toddlers,” features ex-pert advice from Jean Mankowski, Ph.D., one of the CDL’s post-doctoral fellows who will join the faculty as a psycholo-gist in September 2008.

Keath received her undergraduate degree in psychology from the University of North Carolina at Chapel Hill and earned her master's degree in child and adolescent counseling psychol-ogy from Boston College. One of her most exciting projects is building and maintaining the ADD/ADHD site on About.com, a site dedicated to addressing issues related to attention defi-

Understanding Potential Of Children With Krabbe Disease

This study will also help us under-stand the child’s potential for the future learning and predict out-comes after t r e a tm e n t . By gathering information specifically from the MRI, which shows the brain structure, and the neurodevelopmental evaluation, the NFRD team can establish a baseline of information that will then be followed at each study visit over the next 2 years. This will allow the researchers to study trends in brain development and cognitive function and greatly affect the lives of children living with Krabbe disease. Article and Photo by Jim Kenny

Dr. Maria Escolar (right), with a patient, Caterina Marcus and her Mom, Claudina Marcus.

cit hyperactivity disorder. In addition to writing original content, reviews, FAQs, and maintaining an informative blog, Keath moderates an online discussion forum. This forum provides people with ADD/ADHD and their friends and families a place to seek advice, give advice, and dis-cuss everything ADD/ADHD related with others. Here is a short list of links to articles written by Keath Low:

Is Your Teen Sleep Deprived? Getting Serious About Sleep

Stop, Look and Listen: Tips for Improving Communi-cation with Your Kids

Still Not Sleeping Through the Night: Tips for Get-ting Your Almost 1-Year-Old to Sleep

Toddling Off to School: Is Your Toddler Ready for Preschool?

From Crib to Bed: Helping Toddlers Make the Transi-tion to a Big Bed

Welcome Home Adopted One: Easing Your Newly Adopted Child into the Family

Teen Pregnancy Q&A

Preschool Children and ADHD

Tips for Maintaining a Scream-Free Home

Autism Programs at the CDL Story Continuation

Currently, 1 in 150 individuals is diagnosed with an autism spectrum disorder making it

more common than pediatric cancer, diabetes, and HIV combined. As a result there is a

rapidly growing need for services and training in the area of autism both within our state

and nationally. Here at the CDL, we’re trying to help meet these needs through a variety

of existing and new clinical services, clinical training, and clinical research programs.

The CDL focuses on unique service programs that

integrate clinical services, clinical teaching, and

clinical research or evaluation in an interdiscipli-

nary context. We also focus on leveraging CDL

expertise and resources to expand services state-

wide in close collaboration with our partners out-

side of the university who are key leaders in DD

services in state government, advocacy for persons

with disabilities, family support services, and dis-

ability care-provider networks. Our various autism projects were developed with this

kind of integrated focus in mind. Here are some examples:

The Early Childhood LINK program focuses on interdisciplinary services and training

for children with low-incidence/high severity complex conditions including autism,

severe communication disorders, and complex sensory and motor conditions. The

LINK team (Becky Edmondson Pretzel Ph.D., Debbie Reinhartsen Ph.D., Hal Shigley

Ph.D., Sue Porr, M.Ed., M.S.) has worked closely with the North Carolina Department

of Public Instruction to provide statewide training and technical assistance in the

area of autism assessment and intervention planning. The LINK program is one of

the most extensive autism training and technical assistance programs in the state

working with issues related to autism in school settings.

The Neurodevelopmental Function in Rare Diseases program directed by Maria Esco-

lar, M.D. focuses on longitudinal developmental evaluation, services, and research

for children with rare diseases associated with developmental disability. It is the only

program of its kind in the country. The NFRD team works with a large variety of rare

inherited disorders including some that share phenotypic features with autism spec-

trum disorders. This new work on autistic impairment in the context of specific

medical conditions is breaking new ground in the field of developmental disabilities

and has the potential to shed new light on the etiology and treatment of some as-

pects of autism.

The CDL has a longstanding program in genetic conditions associated with develop-

mental disabilities. CDL faculty members who work in this program (Anne Wheeler

Ph.D., Caroline Hexdall Ph.D.) focus on interdisciplinary assessment and intervention

for children and adults with genetic conditions associated with developmental dis-

ability. This program has worked primarily in the area of Prader Willi syndrome and

is planning expansions to other conditions that are associated with autism (Williams

syndrome, Angelman syndrome, Fragile X syndrome).

The NC Leadership Education in Neurodevelopmental Disorders program focuses on

impacting both university-based and statewide training of clinicians and clinical lead-

CDL psychologist, Caroline Hexdall, Ph.D. reviews current articles— pro-viding nuggets of knowledge in 200 words or less! Humphries, K., Traci, M. A., & Seekins, T. (2008). Food on film: Pilot test of an innovative method for recording food intake of adults with intellectual dis-abilities living in the community. Jour-nal of Applied Research in Intellectual Disabilities, 21, 168-173. There is an increasing importance to reach the nutritional needs of individu-als with intellectual and developmental disabilities (I/DD). Thus, Humphries, Traci. and Seekins (2008) created an innovative intervention for monitoring the nutritional intake of 9 adults with disabilities, such as Down syndrome, Prader-Willi syndrome, cerebral palsy and idiopathic intellectual disability). Because previous attempts to have the participants provide information about their daily food intake through the method of 24-hour recall were unreli-able, they provided the participants with a Food on Film research kit. The kit comprised a film camera, placemats with grids (for more consistent place-ment of food), an instruction or prompt card and a lunch bag that the partici-pants kept following the study. Partici-pants were interviewed first using the 24-hour recall procedure and subse-quently with the additional help of the photographs. In the first interview, without the support of pictures, partici-pants’ information was rated as “unreliable.” However, in the second interview, the pictures supported the participants’ memory as well as their communication in reporting their food intake. The authors discussed the im-portance of further validation of the new method. Send us topics you are interested in learning about and Dr. Hexdall will search the current literature.

Literature Review

Fall 2008

Page 3

Continued on page 5

Change is in the air. In the field of developmental disabilities,

in our state, at our university, at the new Carolina Institute for

Developmental Disabilities, and at the Center for Develop-

ment and Learning (CDL). With all this change in the air, it’s a

good time to think about what the future holds for the CDL.

One way to frame our future is in relation to our past. The

CDL has a long and distinguished history of innovation and

excellence in programs for developmental disabilities.

Founded in 1962, the CDL (originally named the Division for

Disorders of Development and Learning) was UNC‘s and

North Carolina’s first center for the study of and service for

developmental disabilities. The CDL’s founding director, Dr.

Harrie Chamberlin, was a member of the Kennedy Admini-

stration’s prestigious President’s Panel on Mental Retardation

that developed ground-breaking legislation for the reform

and development of programs for developmental disabilities

nationwide. In 1965, the CDL became one of the nation’s first

University Affiliated Facilities (UAF) for developmental dis-

abilities funded by the Administration on Developmental Dis-

abilities (originally termed UAFs and now termed University

Centers for Excellence in Developmental Disabilities or

UCEDDs). In 1966, the CDL became the clinical arm of one of

the nation’s first Developmental Disabilities Research Centers

(DDRC) funded by the National Institute of Child Health and

Human Development. And in 1970, the CDL became one of

the nation’s first Leadership Education in Neurodevelopmen-

tal Disorders (LEND) clinical training sites funded by the Ma-

ternal and Child Health Bureau. Currently, the CDL is one of

only a few developmental disabilities programs in the country

to be affiliated with each of the three developmental disabili-

ties programs of national significance – the UCEDD network,

the LEND network, and the DDRC network. Without a doubt,

this distinguished history provides us with a solid and impres-

sive foundation to build on in important and meaningful ways

to meet new needs at the state and national level.

Another way to think about where we’re going is to reflect on

where we are, who we are, and what we do. Who we are is an

impressive group of clinical experts, advanced trainees, and

dedicated staff in the area of developmental disabilities. We

represent over a dozen academic departments and a large

variety of clinical areas including pediatrics, psychiatry, psy-

chology, education, speech-language pathology, audiology,

physical therapy, occupational therapy, nutrition, social work,

public health, nursing, and dentistry. Advanced trainees in

each of these disciplines work closely with CDL faculty in all

areas of CDL operations (leadership, clinical service, teaching,

and research). Our faculty and trainees work in partnership

with a variety of state and community partners who consist of

key state leaders in the areas of health services, public health,

education, legislation, and advocacy for persons with disabili-

ties as well as a statewide network of service providers. What

we do is equally impressive. Last year we provided interdisci-

plinary services to over 2,000 persons with disabilities (in clin-

ics, in homes, in schools, and in the community), trained over

300 trainees in the area of developmental disabilities in over a

dozen university departments and through multiple commu-

nity programs, and produced an impressive array of scholarly

and research products covering a wide variety of topics in the

field. With this kind of potential for productivity and state-

wide impact, our prospects for continued growth are clearly

strong.

Faced with a new set of demands and a new landscape for

developmental disabilities in our state and at our university,

how can we adapt in a way that best meets the new chal-

lenges in the field?

At the CDL, our focus is on developing unique clinical service

models for persons with developmental disabilities. Several

aspects of CDL programs make them unique. First, we try to

fill “gaps” in disability services by providing model service

programs that do not exist in other parts of the state (or in

some cases the country). Second, we work to fully integrate

clinical, teaching, and research functions into our programs to

help insure the translation of research into practice, the on-

going evaluation of service efficacy, and the development of

expert, evidenced-based clinicians and clinical leaders. Third,

programs involve service integration across multiple disci-

plines given the often complex and multi-systems nature of

developmental disabilities. Finally, we try to develop “end-to-

end” services that address needs within a lifespan perspective

given the lifelong nature of developmental disabilities.

The challenge now is to work with our state partners to iden-

From the Desk of the Director

Where to from here? By Jim Bodfish, Ph.D.

Fall 2008

Page 4

Continued on Page 6

tion Head for Audiology. He will be joined by faculty colleagues Angela Rosenberg, Dr.Ph.

(Director of Leadership and Training at CDL), Melody Harrison, Ph.D. (Division of Speech and

Hearing Sciences) and Lewis Margolis, M.D. (Department of Maternal and Child Health, UNC

School of Public Health).

In keeping with the MCHB educational mission, the grant will focus on:

1) graduate-level preparation of audiologists and speech-language pathologists for leadership

roles in education, service, research, administration, and advocacy related to services for young

children with hearing loss and their families;

2) development and dissemination of curricula, teaching models, and other educational resources

to enhance MCH content in communication disorders training programs; and

3) continuing education, consultation, and technical assistance geared to the needs of the MCH

community.

The new project will join UNC’s “MCH Leadership Consortium,” consisting of MCHB-funded pro-

jects at UNC in Maternal and Child Health, Social Work, and CDL’s Leadership Education in Neu-

rodevelopmental Disorders (LEND). Now in its seventh year, the Leadership Consortium works

in partnership with MCBH, its National MCH Training

Network, and Title V programs at local and state lev-

els including the North Carolina Division of Public

Health. Over the year, students participate in a three

-day “leadership intensive” followed by workshops in conflict management/facilitation;

cultural competence; and family/professional partnerships. Students funded on the new

grant will also participate in the work of the North Carolina’s Advisory Board for Early

Hearing Detection and Intervention (EHDI) within the Division of Public Health.

UNC is one of only three universities in the U.S. to be awarded an MCHB leadership

grant in pediatric communication disorders. In addition to the UNC-based activities de-

scribed above we look forward to interacting with our counterparts at Vanderbilt and

Utah State University, along with colleagues at the National Center for Hearing Assess-

ment and Management.

By Jack Roush, Ph.D.

ers in the area of developmental disabilities. Annually we provide interdisciplinary training to over 300 trainees statewide, as

well as students in over a dozen University departments through a large variety of training programs. This program has been

continuously funded since 1970. It is directed by Steve Hooper, Ph.D. and Angela Rosenberg, Ph.D. who have recently submit-

ted an application to expand the LEND program to include a specific focus on training clinical leaders and primary care providers

statewide in autism assessment and treatment.

The CDL, as the clinical services arm of the Carolina Institute of Developmental Disabilities, is hosting and participating in a new

policy, practice, and research workgroup that is focusing on impacting statewide services for early identification of autism. The

group is being directed by Dr. Betsy Crais (UNC Division of Speech & Hearing Sciences) and includes representatives from the

CDL, NDRC, TEACCH, and FPG at UNC and also statewide partners from the NC Pediatric Society, ASD Partners, NC DHHS, NC

DPI, Autism Society of NC, NC Early Intervention, and the NC Office of Rural Health and Community Care.

We look forward to working with our University and state partners to continue, refine, and hopefully expand the reach of these au-

tism programs. Please feel free to contact us if you would like additional information on these programs or if you are interested in

partnering with us in any of these service areas.

Fall 2008

Page 5

Leadership Education in Congenital Hearing Loss continued

An infant referred from newborn

hearing screening is evaluated by a

pediatric audiologist at UNC Hospi-

tals using a diagnostic form of the

auditory brainstem response.

LEND audiology trainee Laurel Thompson, a

third year doctoral student at UNC and one of

four fellows on the new MCH leadership grant,

with her poster presentation at the annual con-

vention of the American Academy of Audiology.

Autism Programs at the CDL continued

sor in the Departments of Psychiatry and Pediatrics. He is a standing member of the Childhood Psychopathology and Develop-

mental Disorders Scientific Review Committee at the National Institutes of Health and recently completed his term as the Associ-

ate Editor of the American Journal of Mental Retardation. His research focuses on the pathogenesis and treatment of behavioral

and movement disorders in autism and related conditions, and on the development of novel interventions. He has been published

in The New England Journal of Medicine, Science, the American Journal on Mental Retardation, Journal of Autism and Developmental

Disorders, Autism, and the Journal of Pediatrics.

It’s clear that Jim is impressed by all he’s seen so far at the CDL. “I feel fortunate to have an opportunity to work with the faculty

and staff at the CDL. The CDL has an impressive history of clinical service, training, and research and has played a significant role

in these areas in North Carolina and nationally. The faculty and staff here are remarkable – I’m excited to have the opportunity to

work with them. Frankly, I feel like this is the best job in the field of developmental disabilities, and I feel honored to have it.”

Jim is also optimistic about the future of the CDL as a part of the Carolina Institute for Developmental Disabilities. “It’s an exciting

time both for the CDL and for the University. The formation of the Carolina Institute brings together key pieces of DD services,

training, and research within the University in an unprecedented way. I’ve been fortunate to have worked in the past with at least

some parts of each of the programs that comprise the Institute. There’s tremendous potential for these programs to come to-

gether in unique and synergistic ways to address significant unmet needs in our state as well as in the field of developmental dis-

abilities.”

Jim, his wife Linda, their daughter Katie (a Junior and Kenan Fellow at UNC School of the Arts) and son Will (a senior in high

school) will come to the Chapel Hill area after having spent 21 years in Morganton, North Carolina.

Fall 2008

Page 6

Welcome to the New CDL Director continued

From the Desk of the Director continued

tify new areas of need and to work with our new Institute partners to refine our existing service and training programs or develop

novel ones to meet these needs. Can we meet growing state needs in autism services and training? Can we increase community

capacity to serve persons with severe disabilities that will help insure that they can live, learn, work, and play in their natural com-

munities? Can we address the needs of children with genetic and medical conditions associated with developmental disabilities

that put a premium on the careful integration of medical and allied health services? Can we address the unique needs presented

by persons with complex, low-incidence/high severity disabilities to support their full inclusion into their natural communities?

Can we provide expert unbiased guidance to the state on the development of needed services for persons with disabilities and

their families? A look at our past shows that we’re capable of this kind of unique need-based research-driven service and teaching.

Presently, much of what we do certainly fits this mold. And now, persons with disabilities and their families hope that we can

match our history in innovative, meaningful, accessible, and practical ways to help with their current and future needs.

I think we’re up to the task!

Welcome 2008-2009 CDL Trainees!!

Are you a former CDL Trainee? We want to remind you to contact the CDL annually. Send us an email and let us know what you are up to!

Projects In Brief

DVD Supports Youths to Transition from Pediatric to Adult Health Care Settings The Project STIR (Steps Toward Independence and Responsibility) team recently com-pleted a DVD of scenarios and activities to complement the CHAT (Carolina Health and Transition) curriculum project. The NC Division of Public Health, in collaboration with Alliance for Disability Advocates and Centers for Independent Living, initiated CHAT. Deb Zuver developed and directed the scenarios that offer brief stories of youths ad-dressing issues with a health care provider; follow up activities prompt youths to apply useful tools in their own lives. Roles were enacted by the STIR team of self-advocate trainers and other actors. Tom Lipscomb Video Productions produced the CHAT DVD.

Division TEACCH collaborates with Suzuki Violin Academy to develop a program for children with autism/PDD.

The Suzuki Academy of North Carolina (SANC) now offers the first Suzuki program in the nation specifically designed to meet needs of children with autism spec-trum disorder (ASD) and/or pervasive developmental disorder (PDD). This unique approach combines as-pects of applied behavior analysis, TEACCH, and music therapy along with the time-tested “Learning with Love” approach pioneered by Dr. Suzuki over the last 50 years.

NC Assistive Technology Expo Save the date for the 18th annual North Carolina Assistive Technology Expo in Raleigh this December 4-5th. Conference offerings include an exhibit hall, 40 concurrent sessions, preconference sessions, poster session, and a keynote address. Last year’s 700 partici-pants from eleven different states included persons with disabilities, family members, teachers, therapists, vocational and rehabilitation and independent living staff, employ-ers, college professors, medical staff, college and university students, and authorized state purchasers. Details available at www.ncatp.org.

For more than 40 years, the CDL has provided innova-tive, high-quality clinical, research, training, and tech-nical assistance activities supporting individuals with developmental disabilities.

As the population of our state and nation grows, this disability community grows as well. Families dealing with a loved one with a dis-ability can often feel over-whelmed. Through innova-tive research that improves practice and enhances edu-cation, we will find solutions.

Now, more than ever, we need well-trained practitio-ners, teachers, and research-ers. State funds pay only part of the costs to recruit and retain the best faculty and support the unique training and programs that are the hallmarks of the CDL experience. It is private funds that sustain and en-hance these extraordinary opportunities for students, patients, families, and fac-ulty. We can’t do it without you!

Click here to make a dona-tion or mail your check to:

Center for Development and Learning, University of North Carolina at Chapel Hill, Office of Development, CB# 3366, Chapel Hill, NC 27599-3366.

We would love to hear from you if you have comments about our news-letter, ideas for potential articles, or would like to be added to our list!

newsletter@cdl.unc.edu

Your Support

Send us your comments and suggestions:

Fall 2008

Page 7

Editor: Debbie Reinhartsen Director of Dissemination, Speech-Language Pathologist and Sec-tion Head, and Adjunct Assistant Professor, Division of Speech and

Hearing Sciences.

Assistant Editor: Julia Tarr Communications and Special Projects Coordinator