Autism Consortium, Boston, MA
2007-2011
Autism Consortium Family and Clinician Support
As the Autism Consortium embarks on a Boston-wide research
endeavor to develop a greater understanding of the etiology
and treatment of autism spectrum disorders (ASDs), this
grant will enable the Consortium to provide care and support
to the families and clinicians involved in their research.
Through the Family Support component of this project, the
Autism Consortium will provide several participating Boston-area
institutions with Autism Family Resource Specialists who
will provide support to families grappling with the diagnosis
of autism. The Resource Specialists will be trained in how
to support families dealing with the feelings that accompany
a diagnosis of ASD, and how to educate others at their institutions.
The Resource Specialists will provide educational materials
to families including research program information. In addition,
Resource Specialists will provide consultation/coaching,
set up parent-to-parent support programs, and arrange topical
seminars. The Resource Specialists will thus provide critical
continuity with families from the time of diagnosis over
the course of the research program. Through the Clinician
Support component of this project, the Consortium will provide
support for quarterly meetings of participating clinicians
to share best practices, raise issues or concerns about
the research program, learn about emerging research findings,
and identify opportunities for research and improved care.
The Autism Consortium
Cold Spring Harbor Laboratory, Cold Spring Harbor, NY
2007-2011
Support of Postgraduate Courses at Cold Spring Harbor Laboratory
related to Autism Spectrum Disorders as part of the CSHL
Brain Health Initiative: Focus on Autism and Related Developmental
Disorders
The NLM Family Foundation, in partnership with other autism-focused
organizations, supports educational programs at Cold Spring
Harbor Laboratory (CSHL) related to autism spectrum disorders.
As part of the Brain Health Initiative being developed at
CSHL, CSHL is now working on new postgraduate courses designed
to promote greater understanding of the neurobiological
and genetic mechanisms affecting brain health. To enhance
and extend research efforts on autism and related developmental
disorders, the Initiative's Focus on Autism and Related
Developmental Disorders has developed two new postgraduate
lecture courses led by a distinguished faculty of top researchers
from around the world. One course, Workshop on Autism Spectrum
Disorders takes an integrative approach
to present the clinical, genetic, neurobiological and cognitive
elements of autism spectrum disorders to senior postdoctoral
fellows, assistant professors and neuroscience faculty interested
in initiating research in these topics. The second course,
Biology of Social Cognition , addresses
how cognitive processes involving social behavior are developed
and how they are altered or dysregulated in autism spectrum
disorders and other developmental disorders.
Cold
Spring Harbor Laboratory
Combined Jewish Philanthropies / Hebrew College, Newton, MA
2003- End of fund
Support of the Jewish Special Education Program
This grant establishes a perpetually endowed fund for college scholarships and for increased inclusion of students with special needs into educational programs at Hebrew College. It includes funding to develop new courses and faculty in the Jewish Special Education Program, to support student stipends, and to support a series of specialized seminars on the role of special education in the Jewish community. It also provides outreach support to inform community families about educational opportunities for special needs students at the College.
Hebrew College
Massachusetts Advocates for Children, Boston, MA
2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009, 2010
Establishment and Support of the Autism Special Education Legal Support
Center
The goal of this project
is to provide training, technical assistance, and advocacy
services necessary to ensure that children with autism receive
equal educational opportunities. Goals include: Providing
parents with information about state-of-the-art services
and programs available to meet individual needs of students
with disabilities; Insuring that children with autism receive
special education services necessary to reach their potential
in areas impacted by their disability; Increasing public
awareness and understanding of the potential and competency
of individuals with autism, targeting policy makers, media,
educators, service providers, as well as the general public.
The Autism Special Education Legal Support Center will accomplish
these goals by: providing community-based workshops for
parents, educators, and medical professionals regarding
legal rights and range of service options available for
children with autism; providing a hotline to give legal
and technical assistance to families of children with autism;
training attorneys to increase representation of low-income
students with autism to ensure that children receive legally
mandated special education services; and providing information
to the media, the legislature, and other policy makers regarding
changes necessary to ensure children with autism receive
services that reflect their potential.
Click
here to read the NLMFF Interview with Massachusetts Advocates
for Children
Massachusetts
Advocates for Children
Massachusetts General Hospital
2011
Principal Investigators: Sarabeth Broder-Fingert, MD and Kimberly Kopecky
Hospital Admissions Plans for Patients with Autism at Massachusetts General Hospital
The primary research objective is to expand and study the outcome of a quality improvement project known as "Autism Care Plans (ACPs).” The investigators hypothesize that the use of ACPs will improve the in-hospital experience for patients with autism and their families. On paper, the ACP is a template for caregivers of patients with autism to fill out prior to hospital admission. The ACP documents the patient's primary modes of expressive and receptive communication, social and pragmatic considerations when preparing for patient hospitalization, and relevant sensory/perceptual issues. The investigators will be evaluating pre and post-hospitalization caregiver satisfaction after these templates have been utilized in the inpatient setting.
The ACP for patients with autism strives to ensure 1) appropriate and efficient patient care, 2) patient and family satisfaction with hospital performance and services, 3) reduced adverse outcomes in the inpatient setting and 4) cost effectiveness. The ACP attempts to achieve the above goals using a three-pronged approach. The first element of the ACP is to enhance communication between patient and doctor. The second element of the ACP attempts to make autistic patients as comfortable as possible within the unfamiliar and often unpredictable hospital environment. The third element of the ACP involves extensive provider education and outcome analysis.
Massachusetts General Hospital
Yale University , Child Study Center , New Haven , CT
2007-2009
Principal Investigator: Fred Volkmar, MD
Undergraduate Education in Autism (Co-funded with the Lurie Family Foundation)
Since
1984, the Child Study Center has conducted a Yale College
seminar course on autism and related conditions. This grant
supports the expansion of that course, which over 800 students
have participated in over the years. As part of this course
Yale College students attend a weekly 90-minute seminar
on autism led by Dr. Fred Volkmar and Dr. Ami Klin. Students
also spend three to four hours per week in a field placement
at the Benhaven School working with significantly behaviorally
and developmentally challenged students. The seminar portion
of the course is designed to cover topics in diagnosis,
treatment, genetics, and research with each meeting led
by a different Yale faculty member under the supervision
of Drs. Volkmar and Klin. Students are typically drawn from
diverse backgrounds but usually include one or two siblings
of a child with autism, pre-med and pre-law as well as psychology
students.
Child
Study Center, Yale University
|
