UCEED Director Receives Pioneer for Persons with Disabilities Award

The U.S. Department of Health and Human Services selected Phyllis R. Magrab, Ph.D., director of the Georgetown University Center for Child and Human Development (GUCCHD) and professor of pediatrics, as the recipient of its 2008 Pioneer for Persons with Disabilities Award for her work with and on behalf of individuals with disabilities. The award was presented by Margaret Giannini, M.D., F.A.A.P., director of the DHHS Office on Disability on October 27, 2008 at the Hubert H. Humphrey Building. Congratulations Dr. Magrab!
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Georgetown University Center for Child and Human Development
Welcomes new colleagues and friends from China

   

Delegates from one of the top universities in China, based in Shanghai, traveled over 7,000 miles to celebrate a new partnership between Georgetown University’s Center for Child and Human Development (GUCCHD) and East China Normal University (ECNU).

This partnership will promote international collaboration in the fields of early childhood education and education for children with developmental disabilities.

Dr. Yu Lizhong, President of ECNU and Dr. Howard Federoff, executive vice president for health sciences, spoke at the signing ceremony.

This relationship began in 2004 when Dr. Toby Long, a professor at GUCCHD, was invited by Dr. Zhou Jing, Dean of the School of Pre-school Education and Special Education to lecture to graduate students and practicing teachers. Since then, Dr. Long and Dr. Phyllis Magrab, Executive Director of GUCCHD, developed an affiliation agreement with ECNU.

Georgetown joins good company -- ECNU has already established partnerships with other universities in the U.S., including New York University, University at Albany, and many others.
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Toby Goes to China

The relationship between Georgetown University Center for Child and Human Development and East China Normal University continues to grow.  The Shanghai Education Forum has invited Dr. Long to speak on the importance of interdisciplinary services for children with disabilities in Shanghai in May, 2009.  Following the Forum, Dr. Long will speak to a group of pre-service and graduate teachers on contemporary practices for children with disabilities. 

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Aging with a Developmental Disability
     [Special issue] Topics in Geriatric Rehabilitation

The collection of papers in this issue brings the reader contemporary practice information on the aging of individuals with developmental disabilities. Although focusing on various aspect of contemporary service provision these papers support three important messages for all rehabilitation professionals. First, it is clear from these papers that promoting healthy aging through activity, exercise, and prevention of obesity, cardiovascular disease and secondary complications is of utmost importance. As in the general population of elders, elders with developmental disabilities need to maintain an active lifestyle. Second, knowledge of aging in the population of individuals with developmental and intellectual disabilities is needed by all rehabilitation providers. For too long it has been assumed pediatric providers are needed to provide services to this group of adults. Adults with adult onset conditions should be seen by the most appropriate provider and most often that is a professional whose expertise is adults. Finally, providers should design activity-based programs and therapeutic strategies that can be embedded into everyday activities, promote an active lifestyle, and use natural occurring community-based programs and services. Due to legislation, advocacy, and philosophical shifts in service provision individuals with Down syndrome, cerebral palsy, autism, and other developmental disabilities are part of the community more than ever. They will continue to be a part of the community as they age and should be served in the community, integrated into programs that are available to all aging adults and elders.

Long, T. (Ed.). 2008. Aging with a Developmental Disability [Special issue]. Topics in Geriatric Rehabilitation, 24(1).

To view the entire article, please click the link below:
http://journals.lww.com/topicsingeriatricrehabilitation/toc/2008/01000

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About Us: The Georgetown University University Center for Excellence in Developmental Disabilities (UCEDD)

Providing services and supports for individuals with intellectual and other developmental disabilities, families and public and private agencies in the District of Columbia for over four decades.

For more information about the Georgetown University, University Center for Excellence in Developmental Disabilities, please click the brochure

 

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Service Learning 2008 - 2009

Two GUCCHD faculty participated in the Georgetown University Medical Center’s Service Learning Program. The Service Learning Program is part of the Introduction to a Health Care course offered by faculty in the Department of Family Medicine; it is a full-year required core course for first year medical students. The purpose of the course is to introduce the students to the U.S. health care system and community health in the District of Columbia. The GU-UCEDD faculty assumed multiple roles for this project including (1) acting as a cultural broker to introduce the students to communities in the District; and introducing the students to working with individuals with developmental and other disabilities in hopes that they would consider a specialty providing services and supports to this population.

                                      HSCSN Male Caregiver's Group

One service learning program was conducted in partnership with the HSCSN Male Care Givers Advocacy group. This group is comprised of fathers of children with disabilities. The sessions were conducted at the HSCSN Southeast offices in Ward 8. Six male students developed and presented 6 sessions on health disparities impacting African American communities, including current statistics, causes, and symptoms. Each session involved a specific activity designed to change behaviors, and ultimately impact health outcomes. For example, one session focused on obesity within the African American community and addressed changing the way in which food is prepared and how to reduce foods with high salt or sugar content in their diets. The male caregivers were also encouraged to include their children in grocery shopping and food preparation.

The second service learning program included 3 students whose task was to develop a PowerPoint presentation and an informational brochure on supporting people with MRSA infections. These products were developed after doing a needs assessment of provider staff and individuals with intellectual and other developmental disabilities. Training materials were reviewed for content validity by a hospital intervention coordinator. The medical students also conducted in-service training for 50 agency staff. The PowerPoint presentation developed will be placed on the DC HRP web site.

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GU-UCEDD Consumer Advisory Committee (CAC)

The Georgetown University Center for Excellence in Developmental Disabilities (GU-UCEDD) has an established Consumer Advisory Council (CAC). The GU-UCEDD has made a concerted effort to ensure that the CAC reflects a cross-section of individuals representing various aspects of the community, with a majority of the membership comprised of individuals with developmental and other disabilities and family members. The CAC is comprised of individuals from diverse racial, ethnic, cultural and linguistic groups consistent with the demographics in the District. The consumer membership includes young and aging adults with disabilities receiving services and supports from the Department on Disability Services, Developmental Disabilities Administration (DDA); graduates of the GU-UCEDD Advocating for Ourselves advocacy training and leadership project; representatives of Project Action and ADAPT (self-advocacy coalitions) and parents and other family members.

The CAC meets three (3) times a year January, May and September. Its primary purpose is to advise the GU-UCEDD on the identification, development and implementation of core function activities. The CAC plays an important role in assisting in the development of the 5 year grant application by recommending areas of emphasis and other priority issues to address within the District of Columbia.

To view the Consumer Advisory Committee (CAC) Roster, please click here.

The GU-UCEDD is pleased to feature a member of the CAC, Jonathan Herring, who has been a member since September 2007. Please see the article below.

Consumer Advisory Council (CAC) Featured Article: Jonathan Herring

My name is Jonathan Herring and I am 24 years old. I am visually impaired with a purpose to live my life as a normal individual. I graduated from M.M. Washington Senior High School in 2005 with a high school diploma with a focus on science.
I recently finished a leadership class on Strategic Planning. I sit on several boards in the District of Columbia such as the Development Corporation of Columbia Heights of which I am currently the chaplain; advocacy groups such as Parents Advocate Leaders and Male Caregivers. I also recently joined a national organization, the National Youth Leadership Network.
One of my greatest accomplishments is that every job that I have had in the past, I never had to apply for; yes, I may have limitations but I do not let my disability handicap me or hold me back.

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Promising Practices in Home and Community-Based Services
The District of Columbia – Securing Access to Quality Health Care Services for Adults with Intellectual Disabilities

Summary
The District of Columbia’s Department on Disability Services, Developmental Disabilities Administration (DDA) has funded an initiative in partnership with the Georgetown University Center for Excellence (UCEDD) in Developmental Disabilities to promote access to health care services for the 2000 adults receiving services and supports. The initiative is known as the DC Health Resources Partnership, and accomplishes its goal through targeted technical assistance, training, model service delivery development and information dissemination.

Introduction
People with intellectual disabilities face numerous challenges in achieving and maintaining good health. Those challenges include inadequate planning to address the needs of an aging population, exclusion from health promotion campaigns, shortages of health care professionals willing to treat them and meet their special needs, and unwieldy payment structures for health care and other supports that are incongruent with community life.

The Health Resources Partnership addresses five of the six goals outlined in the 2001 U.S. Surgeon General’s report Closing the Gap: A National Blueprint for Improving the Health of Individuals with Mental Retardation.

• Integrate health promotion and community environments
• Increase knowledge and understanding about the needs of individuals with mental retardation
• Improve the quality of health care
• Train health care providers
• Increase the sources of health care.

The District of Columbia initiated a partnership with the University Center for Excellence in Developmental Disabilities to conduct an array of activities including: (1) recruiting and maintaining a resource pool of health care providers; (2) providing enhanced knowledge and understanding to individuals, families and health professionals of the unique health issues experienced by people with intellectual and other developmental disabilities; and (3) providing improved coordination of health care for persons with intellectual and developmental disabilities and improved consistency in health care delivery through the identification and promotion of best health care practices.

Impact
The first three years focused on the development of processes that support a systematic approach to health care planning and delivery. The DC HRP has had many partners in this effort, but has assumed a leadership role in the development and implementation of a variety of processes that are aimed at improving health care access and quality. They include:

• Health Passports
• Health Management Care Plans (HMCPs)
• Physician-to-physician intensive consultation and technical assistance
• Creating a medical home
• Educating medical residents, medical students and nursing students
• Mental health services expansion
• Dental Care
• Coordination with area hospitals

For more information, please visit DC HRP at: http://dchrp.info

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In Her Own Words...
A Magic Year : Perspectives on being an international scholar at the Georgetown University Center for Child and Human Development, September, 2007 through August, 2008
Xueyun Su, Ph.D, Assistant Professor, East China Normal University

Xueyun Su, Ph.D Assistant Professor, East China Normal University

This year has been filled with incredible experiences both professionally and personally. Professionally, my year at the Center for Child and Human Development has enriched my knowledge and skills related to serving individuals with disabilities, broadened my vision of the potential of individuals with disabilities, and secured my commitment to the field. Personally, it has been all about personnel warmth, building friendships, and experiencing joys! As this was my first year living abroad by myself without the security of my family I was nervous. But, because of the GUCCHD faculty, I built a new family, who were as hard to leave as my own biological family. It has been my greatest experience working with my host professor, Dr. Toby Long. Her commitment to me and the Center, her expertise and experience with children and disabilities, her vision, her humor, and love of life inspired me to grow as a professional. Under her guidance and the support of all the faculty of the GUCCHD I participated in a variety of activities: Leadership Education in Neurodevelopmental Disabilities (LEND), an interdisciplinary training program funded by the Maternal and Child Health Bureau (LINK) fostering the leadership skills needed for professionals to promote family-centered, interdisciplinary, comprehensive, and community based services to individuals with disabilities.

Bright Beginnings, an Early Head Start and Head Start program specifically designed for children without permanent housing.

Autism and Communication Disorder Clinic, an interdisciplinary diagnostic clinic for children suspected on being on the autism spectrum.

Developmental Evaluation Clinic, an interdisciplinary follow-up program for infants and toddlers born premature.

Bright Futures, a developmental screening program for children living with their families in transitional housing.

I was able to make a variety of school and community visits throughout the metropolitan DC area and attend national, regional, and local conferences such as the Training Institutes, 2008: Developing Local Systems of Care for Children and Adolescents with Mental Health Needs and their Families: New Directions to Improve Outcome, the Annual Conference of the Association of Centers for Excellence in Disabilities, and the Annual Conference of American Association of Individuals with Developmental Disabilities.

As I shared with my colleagues back in Shanghai, all these wonderful experiences not only opened my eyes, but also touched my heart. The contemporary practices promoted by the GUCCHD inspired me to translate these practices to my country, promoting an interdisciplinary, family-centered, community based system of care for individuals with disabilities through the life span.

There are many great things I have learned from my new GUCCHD family during this year. I will do my best to carry on their inspirational work within China. Most importantly I will do my best to put forth:

Family-Centered Care. It is always amazing to me that each child has her/his unique way to look at the world and to express herself/himself. Seeing the picture from a child/parent’s perspective, caring and respecting them is the key to providing appropriate and high-quality services/education.

Sharing and Collaboration. It is the atmosphere of sharing and collaborating which creates unlimited space for excellence and great team spirit. Sharing is learning. It will be not only a philosophy to build my career but also an action to put into practice.

Commitment and Diligence. Working hard and enjoying working can be compatible. My family at the GUCCHD demonstrated to me that through commitment and diligence work is joyful and meaningful.

Interdisciplinary Approach. The GUCCHD faculty demonstrates everyday that a multi-disciplinary team whose members work together, respecting each other’s view, valuing each others input, and sharing expertise broadens your vision and creates comprehensive services to children and their family.

How lucky I am to be part of the GUCCHD family! In China, we have a saying that everyone who works with people with disabilities are one family, since we are all doing the hard work to break the ice, build bridges and to create a brighter future for all individuals with disabilities around the world. I now truly have a world wide family from whom I will continue to learn from, rejoice in our successes, and work to create a more tolerant and accepting world for all of us.

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