Autism Consortium, Boston, MA
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
Boston Jewish Film Festival, Boston, MA
Support for the 2014 ReelAbilities Film Festival
The NLM Family Foundation provided support for the ReelAbilities Film Festival which was held on January 20, 2014 through February 6, 2014 at various venues throughout the Boston area. The festival featured two autism-related films, “Son of the Stars” (about a family with autism in China) and “Wretches & Jabberers.” The Foundation also provided support which enabled Tracy Thresher, Larry Bissonnette, and their companions to travel to Boston to attend the “Wretches & Jabberers” screening where they participated in a Q&A with the audience.
REELABILITIES: Boston Disabilities Film Festival
Cold Spring Harbor Laboratory, Cold Spring Harbor, NY
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
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 offering 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 three postgraduate lecture courses led by a distinguished faculty of top researchers from around the world. These courses are briefly described below:
1) Biology of Social Cognition: This course addresses how cognitive processes involving social behavior are developed and how they are altered or dysregulated in autism spectrum disorders and other developmental disorders.
Autism Spectrum Disorders: This workshop takes an integrative approach to present the clinical, genetic, neurobiological and cognitive elements of autism spectrum disorders.
3) Neurobiology of Speech & Communication: This workshop seeks to integrate a broad spectrum of current research into the neurobiology of speech and speech perception.
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.
Institute on Communication and Inclusion, Syracuse University, Syracuse, NY
2013 – 2015
Principal Investigator: Christine Ashby, Ph.D.
Integration of iPads and Other AAC to Improve Communication for Individuals with Autism
Dr. Ashby’s research team aims to understand the potential of the iPad and other mobile technologies in supporting communication and inclusion of individuals with autism. What applications are most useful for individuals who do not speak or whose speech is highly limited? How can the iPad help individuals with autism develop greater independence, improve their motor planning, or develop verbal speech? Also, while the iPad has nearly unlimited potential, Dr. Ashby’s research team also wants to understand how it can be meaningfully integrated in school and community settings along with other communication strategies to increase meaningful access to academic, work, and social experiences. Technology alone is not sufficient; training and ongoing support is necessary to ensure that use of the technology enhances communicative interactions and educational access. Many schools and agencies are purchasing iPads with no plan for meaningful integration and no plan for how this new technology fits into a larger total communication approach.
The goal of this project is to enhance our understanding of the potential for iPads and other mobile AAC devices to support communication. Through this grant, Dr. Ashby’s research team will explore, evaluate, and organize applications that are most useful in helping non-speaking individuals with autism develop skills related to typed communication and achieving independent communication. The grant will also support the development of a pilot app, a multifaceted assessment tool that will aid in determining candidacy for facilitated communication training, current pointing skills and literacy levels. Finally, this project will focus specifically on the use of the iPad for helping individuals with autism develop greater physical independence when typing to communicate.
Institute on Communication and Inclusion
Massachusetts Advocates for Children, Boston, MA
2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014
Establishment and Support of the Autism Special Education Legal Support
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.
here to read the NLMFF Interview with Massachusetts Advocates
Advocates for Children
Massachusetts General Hospital
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
The Prince’s Foundation for Children & the Arts, London, UK
Relaxed Performances Project
As highlighted in a number of recent high-profile news stories in the UK, there is a real and urgent need for more awareness and understanding of autism as well as a concerted effort to welcome and accommodate young people with autism as audience members in theatres across the UK. A recent development in the UK is activity and interest in increasing arts engagement for young people with special needs including autism and other sensory, communication and learning disorders through the programming of ‘Relaxed Performances’. Relaxed Performances are designed to have a less formal, more supportive atmosphere to reduce anxiety levels. This can be achieved by adapting the performance in a number of ways including changing lighting and special effects to accommodate sensory sensitivities and training theatre staff in how to work with children with special needs. The Prince’s Foundation for Children & the Arts, in partnership with the Society of London Theatre and the Theatrical Management Association, plan to research and develop a best practice model to share with all theatres across the UK and beyond to create a sustainable route into theatre for this new audience. This grant will support the presentation of ‘Relaxed Performances’ in theatres across the UK and these performances will be presented under one umbrella scheme which will support the development, production, marketing, presentation, and evaluation of the performances over the course of one school calendar year. A comprehensive research program will measure the impact of the project both during and beyond the project period. Ultimately, the aim is to provide access to creative, safe and inspiring public theatres for children with special needs and their families.
The Prince’s Foundation for Children & the Arts
Click here to read the press release from the Theatrical Management Association
Project Stretch, Natick, MA
Updating the “D-Termined Program of Repetitive Tasking and Familiarization in Dentistry”
Principal Investigators: David Tesini, DMD and
Carolyn Fetter, Specialized Care Co.
The D-Termined Program of Repetitive Tasking and Familiarization in Dentistry (DTP) is a training program for dentists, first published in 2004 with grant funding from the NLM Family Foundation. This grant is aimed at bringing this 8-year old training video and program material up to date. This unique program provides dental professionals with a dedicated approach to helping patients with autism to go beyond the strange noises, lights and odors of a dental office, to arrive at a point of accepting dental services with no special supports. This program is based on the philosophies and experiences of Dr. David Tesini in his private dental practice. Over a period of years, Dr. Tesini had worked with children with autism who exhibited unsafe behavior when a dental appointment was attempted. Dr. Tesini developed a system for gradually introducing these children to the expectations of a dental visit, such that after a period of time, a good percentage of the children were successfully treated in the normal dental office. These success stories were documented on video and became the basis for teaching others the techniques that he developed. Dr. Tesini’s approach was made into a DVD program for other dental professionals, and was also published on YouTube, with almost 71,000 hits. Based on the testimonials of academics and private practitioners, DTP has been successful in encouraging other dental professionals to open their practices to children with ASD.
David Tesini, DMD
UMASS Medical School Eunice Kennedy Shriver Center
Principal Investigator: Amy Weinstock
Support for Core Operations of the Autism Insurance Resource Center
Located at the UMass Medical School Shriver Center, the Autism Insurance Resource Center provides information to the public about insurance coverage under a new law, An Act Relative to Insurance Coverage for Autism (ARICA), which took effect in Massachusetts on January 1, 2011. There are many questions related to the implementation of the law (e.g., to whom ARICA applies, what treatments are covered, how to access coverage, etc.). The Center, a program of New England INDEX, a long-standing information resource for people with disabilities, is designed to provide information and support for self-advocates, family members, providers, employers, and educators on issues related to medical insurance for autism treatment. This is a two-year leadership grant to fund core operations of the Center, allowing it to provide support to the autism community to access insurance coverage and maximize the impact of this recently enacted groundbreaking legislation.
The Autism Insurance Resource Center