Photo: Rick Guidotti, Positive Exposure

University of Massachusetts Medical School-Shriver Center, Charlestown, MA

Grant Amount: $50,000Grant Date: September 2016

The proposed project will employ several innovative approaches to train graduate-level family nurse practitioner students to meet the complex health care needs of transition age youth (TAY) with autism spectrum disorder (ASD) in a variety of settings. We will develop, implement, and evaluate a pilot nursing curriculum for its feasibility, efficacy, and sustainability. Using pre- and post-tests, we will measure quantitative changes in graduate nursing students’ knowledge, skills, and attitudes, as well as post-test satisfaction ratings and qualitative findings from student self-reflections.

UC Regents, San Francisco, CA

Grant Amount: $22,500Grant Date: September 2016

This unique annual interdisciplinary conference offers a practical update for primary care and subspecialty health care professionals who care for children and adults with developmental disabilities and complex health care needs. The conference attracts a diverse audience: physicians, nurses, psychologists, dentists, social workers, genetic counselors, speech, physical  and occupational therapists, heath policy experts and lawyers, as well as families and individuals with developmental disabilities who wish to learn from various represented disciplines. We request funding to support 3 future years of conference operating expenses exceeding anticipated registrant revenue.

The Arc of the United States, Washington, DC

Grant Amount: $52,462Grant Date: September 2016

The Arc’s National Center on Criminal Justice and Disability (NCCJD) and the Board Resource Center (BRC) will develop and disseminate materials to help health care providers and their female patients with developmental disabilities begin conversations about abuse and abuse prevention. Materials will include videos, handouts and other training tools for providers, patients and their allies. Materials will be patient-centered, and information will be provided in plain language for patients with developmental disabilities. Materials will be developed with an advisory council that includes women with developmental disabilities, health care providers, and victim advocates.

The University of North Carolina at Chapel Hill, Chapel Hill, NC

Grant Amount: $36,030Grant Date: September 2016

We endeavor to increase the capacity for the provision of optimal community based physical and mental health care for individuals with Intellectual/Developmental Disabilities (I/DD) by advanced practice providers(APP) in the state of North Carolina and ultimately in other US states. Using both didactic and experiential components, we will create a  training program for graduate level and post-graduate level advanced practice providers. This program will initially focus on Nurse Practitioners in the state of NC, but aims to collaborate with partners in other states in order to become a national model.  We intend to later extend this opportunity to other APPs such as Physician’s Assistants.

Association of University Centers on Disabilities, SilverSpring, MD

Grant Amount: $40,000Grant Date: September 2016

The Health is for Everyone Action Team (HEAT) will implement developmental disability competencies for physicians. Using the recommendations from the health and wellness strand of the National Goals 2015 Conference and the Healthcare Provider Competencies developed by the Alliance for Disability in Health Care Education, the Association of University Centers on Disabilities will lead HEAT in developing and implementing developmental disability training standards for medical students, while integrating developmental disability content into continuing medical education offerings for current physicians. HEAT will develop a shared strategy plan and begin executing action steps in late 2016.

Special Olympics, Inc, Rochester, NY

Grant Amount: $120,000Grant Date: May 2016

Replicating the successful Team Trainer pilot in NY, this program will bring Team Trainer to 5 new US states each year for 3 years (15 states total over the grant period) and will create the toolkit and resources necessary for sustainable, large scale global replication. Team Trainer pairs a healthcare practitioner with a Special Olympics team for an athletic season to increase participation in Healthy Athletes exams, to support athletes with intellectual disabilities (ID) in setting and achieving wellness goals, to overcome obstacles accessing healthcare, and to give healthcare providers the opportunity to increase their knowledge and ability to meet the health needs of people with ID.

Office of Developmental Primary Care -UCSF, San Francisco, CA

Grant Amount: $225,000Grant Date: May 2016

Access to quality health care for transition age youth and adults with developmental disabilities (DD) requires communication, cooperation and advanced planning. This three-year initiative will improve quality of care for transition age youth and adults in Northern California by focusing on three, basic, areas-of-need: access to communication, behavior support, and end-of-life planning. This project will leverage the Office of Developmental Primary Care’s (ODPC) parallel initiatives and partnerships. These partnerships will expand opportunities to gather and disseminate information and best practices to people with disabilities, clinicians and stakeholders throughout Northern California.

Massachusetts General Hospital, Boston, MA

Grant Amount: $100,000Grant Date: May 2016

Massachusetts General Hospital (MGH) is seeking a two-year grant of $100,000 to advance the Autism Care Collaborative (ACC), an initiative to address the health care needs of individuals with autism spectrum disorder (ASD) across the lifespan.  With a particular focus on those with classic autism, the primary goal is to ensure that these individuals– many of whom have complex medical and behavioral profiles and are non-verbal–are able to access medical care to promote and maintain health and to diagnose and treat acute and chronic conditions. As a teaching hospital, an additional goal is to elucidate and disseminate best practices for caring for this medically underserved population.

JVS – Tri-County Dental Program, Southfield, MI

Grant Amount: $32,000Grant Date: May 2016

This collaborative project between JVS (through its Tri-County Dental Program), the University of Detroit Mercy School of Dentistry (UDM) and Community Living Services, Inc. (CLS) creates a dental home at UDM for people with intellectual and developmental disabilities, and enhances the education of dental students. It gives dental students general and clinical experience with people who have special needs, and empowers patients with disabilities to guide student dentists as “co-teachers.” With increased exposure to this population, dental students’ confidence to treat them will grow. Ultimately, they will be encouraged to care for patients with I/DD in their future dental practices.

Coalition for Compassionate Care of California, Sacramento, CA

Grant Amount: $35,000Grant Date: May 2016

Medical ethicists are often involved in developing policies and procedures to ensure that patients are involved in and aware of medical treatment decisions that affect their lives. Because of this, CCCC believes that bioethicists can make a major contribution to understanding how supported decision making can be implemented throughout the healthcare system. CCCC will bring together bioethicists, legal experts and consumer advocates to outline barriers and identify strategies to implement supported decision making, and will share the findings with others working to make supported decision making a reality.

University of Utah Hospitals and Clinics, Salt Lake City, UT

Grant Amount: $5,000Grant Date: May 2016

To help educate medical providers, social services professionals, and direct caregivers in the mountain west region on improving the care of adults and children with developmental disabilities, we will be hosting a three day conference. Speakers will include family physicians, psychiatrists, medical subspecialists, behavior specialists, licensed clinical social workers, caregivers, self-advocates, and others, all of whom are experts or have significant experience in caring for people with developmental disabilities. Day one will be directed towards teaching caregivers (parents, group home staff, etc.), day two will be directed towards social services professionals (therapists, behavior analysts, group home managers, etc.), and day three will be directed towards medical professionals (family physicians, nurse practitioners, psychiatrists, etc.).

Down Syndrome Connection of the Bay Area, Danville, CA

Grant Amount: $5,000Grant Date: January 2016

The Down Syndrome Connection of the Bay Area (DSCBA) is proposing two major events focused on health and aging for the Down syndrome population. One will be a series of steering committee meeting with area agencies culminating in a summit on Down syndrome, other Intellectual Disabilities, and Aging and how agencies can improve access to healthcare and other services to this population. The other will be a day-long Conference for parents, educators, and agencies in the Bay Area on healthcare issues and resources for individuals with Down syndrome across the life-cycle, with a particular emphasis on adults and older adults.

Cleveland Clinic, Cleveland, OH

Grant Amount: $50,000Grant Date: January 2016

This project aims to improve health services delivery to adults with Down syndrome through the use of a virtual consultation team.  The proposed virtual consultation team will be comprised of a physician expert in developmental disabilities medicine, a clinical pharmacist, and a representative of the disabilities advocacy community.  In advance of scheduled primary care appointments, the team will review the electronic health records of adults with Down syndrome, then generate an email consultation report to the primary care physician, outlining recommendations for health care services tailored to the individual patient’s needs.

Vanderbilt University, Nashville, TN

Grant Amount: $50,000Grant Date: January 2016

The VKC and partners will implement and measure the impact of case-based telehealth training for Tennessee community-based primary care providers. The trainings will enable providers to work with people with IDD and will build on and include content from the IDD Toolkit. Providers will present cases to a panel of clinicians in internal and family medicine, psychiatry, neurology, psychology/behavioral health, occupational therapy, and nursing to obtain practical advice on managing health concerns in people with IDD. We will measure outcomes, and provide a replicable model to reduce referrals to specialists for routine visits, thereby increasing access, cost-effectiveness, and quality care.

University of Arizona Foundation for the benefit of Sonoran UCEDD, Tucson, AZ

Grant Amount: $49,046Grant Date: January 2016

The Sonoran UCEDD has developed a model coordinated primary care program for youth/adults with intellectual and developmental disabilities (I/DD), embedded in the University of Arizona’s Department of Family and Community Medicine (DFCM) resident teaching clinic. The Center for Population Science and Discovery (CPSD) at the University of Arizona Health Sciences Center (AHSC) has reached an agreement with Arizona Medicaid (AHCCCS) to utilize AHCCCS data in support of health equity, enhanced health, and reduced health-care care costs in Arizona. We will compare quality and cost outcomes for our program patients to those in the population of youth/adults with I/DD served by AHCCCS statewide.

Rose F Kennedy Children’s Evaluation and Rehabilitation Center Montefiore Health Systems, Bronx, NY

Grant Amount: $50,000Grant Date: January 2016

None provided

DD Health Home is integrated model of health care (primary&specialty care, MH, case management) for people with IDD.We propose to evaluate DD Health Home from the perspectives of the triple aim: patient outcomes, patient satisfaction & cost efficiency.Through its 6 community based sites the DD Health Alliance has collected extensive data from more than 1000 IDD patients in N.J. & N.Y. RFK UCEDD will aggregate & analyze data on IDD patients including: presentation characteristics & comorbidities, functional health, MH status, satisfaction of care &health utilization & costs.Due to scope & size of database, additional research questions may be studied but will be beyond scope of this proposal.

University of New Hampshire Institute on Disability/UCED, Concord, NH

Grant Amount: $50,000Grant Date: January 2016

People with intellectual/developmental disabilities (IDD) and co-occurring behavioral health needs typically experience gaps in appropriate health services. The UNH Center for START (Systemic, Therapeutic, Assessment, Resources and Treatment) Services provides an array of services to meet the mental and physical health needs of people in this group. Overall, these services can reduce the need for crisis healthcare.  This quasi-experiment will compare Iowans with IDD and behavioral health needs receiving START services (intervention) with peers receiving usual care (control), examining the impact of START services on psychiatric emergency room (ER) visits and inpatient psychiatric stays. 

University of Utah Hospitals and Clinics, Salt Lake City, UT

Grant Amount: $49,983Grant Date: January 2016

The overall objective of this project will be to determine whether patients enrolled in the Neurobehavior HOME Program, a patient-centered medical home for individuals with intellectual and/or developmental disabilities (IDD), have less health care utilization and total health spending than matched patients who are not enrolled in the HOME Program. The funding from the Special Hope Foundation will allow for evaluation of the unique clinical structure of the HOME Program and it’s ability to provide cost-effective care for individuals with IDD.

Positive Exposure, New York, NY

Grant Amount: $97,175Grant Date: September 2015

FRAME is a web-based platform presenting a series of short educational films and photographic galleries designed to help healthcare professionals, students (whether a medical, nursing, therapeutic or genetic counseling student) and families gain a robust understanding of developmental disability while modeling an attitude of respect for the humanity of the patients and capturing their beauty.  This format enables individuals living with developmental disability to connect with the audience as they – and/or their families – introduce themselves to viewers and demonstrate hallmark characteristics of their condition, not in a clinical, but in a true to life yet educational manner.

The Council on Developmental Disabilities, Louisville, KY

Grant Amount: $44,031Grant Date: September 2015

The Council will partner with the Lee Specialty Clinic to research, design and test the implementation of a Supported Decision making model program.  This model will develop and test protocols in a health facility devoted exclusively to serving patients with developmental disabilities (medical, dental, behavioral services).
Clinicians with deep experience and national renown in the field of neurodevelopmental medicine will be engaged in the design and testing of protocols.

The Resource Exchange, Colorado Springs, CO

Grant Amount: $50,000Grant Date: September 2015

The grant will be used as seed funding to plan and formalize a Research Center at the Developmental Disabilities Health Center (DDHC) in Colorado Springs, CO.  TRE research creates meaningful data sets to demonstrate clinical efficacy for the emerging healthcare models for people with IDD and informs the field on improving healthcare quality. This will not only improve the quality of care for 700+ patients at DDHC, it will make evidence-based practices available to all who seek to improve healthcare for people with IDD.  The seed funding will allow TRE to continue its ongoing research with a variety of partners throughout the world, and establish a formal center for IDD health research.

American Academy of Developmental Medicine and Dentistry (AADMD), Prospect, KY

Grant Amount: $20,000Grant Date: September 2015

This is a sponsorship request to support the AADMD strategic planning retreat.

Special Care Dentistry Association, Chicago, IL

Grant Amount: $10,000Grant Date: September 2015

This is a sponsorship request to support the SCDA/iADH international educational meeting in Chicago in April, 2016.

UC Regents, San Francisco, CA

Grant Amount: $15,000Grant Date: May 2015

This is a request for sponsorship of the 15th Annual Developmental Disabilities: An Update for Health Professionals event.

People First of California, Sacramento, CA

Grant Amount: $10,000Grant Date: May 2015

Special Hope Foundation funds will help off-set the cost of the People First Statewide Gathering. The Gathering is an opportunity to teach peers across the state the principles of being a People First Advocate. These principles are: solving problems, speaking up for yourself, contributing to the community, knowing your rights and responsibilities, and most import the organization is run By and For people with development disabilities. This annual Gathering will serve over 200 individuals and focus on health, because many of individuals are facing a number of issues that lead to them leaving unhealthy lives.

The Achievable Foundation, Culver City, CA

Grant Amount: $60,000Grant Date: May 2015

Grant funding would be used to sustain clinic operations across all strategic areas. Operations expenses could include staff expenses, administrative expenses, lab services, medical supplies, equipment purchase and maintenance, electronic health record maintenance, technology and/or other operational expenses. Additionally, with a general operating grant, funding could also be used to expand program evaluation, network building and reporting capabilities in order to better enable Achievable to share its model of care across the California Department of Developmental Services network and with regional centers statewide. 

American Civil Liberties Union Foundation, Inc., New York, NY

Grant Amount: $50,000Grant Date: May 2015

The Disability Rights Program will promote a legally recognized supported decision-making model for people with disabilities. They will create trainings and a toolkit to educate legal professionals, advocates, providers and family members about options for adults with disabilities who want autonomy with support and how to develop an approach that keeps the person with a disability at the center of the decision-making process. Through this project, we aim to develop a cadre of well-trained advocates who can help move the legal community away from guardianship as the prevailing system for people with disabilities and toward supported decision-making as an accepted model within the legal landscape.

Special Care Dentistry Association, Chicago, IL

Grant Amount: $9,900Grant Date: May 2015

The SCDA will assemble a group of experts in the care of special needs populations and postgraduate dental education to 1. Study existing postdoctoral programs that provide training in the care of patients with special needs, 2. Envision an exportable construct that would serve as the framework for a new category of dental residency training program,3. Create comprehensive educational standards for such programs, and 4. Using the standards developed, request an accreditation review process by the Commission on Dental Accreditation (the recognized federal formal recognition process) be developed for this new category of postdoctoral general dentistry residency.

Orange Grove Center, Chattanooga, TN

Grant Amount: $50,000Grant Date: January 2015

Orange Grove Center with Semo Healthcare and Slayback Health and expert consultants Seth Keller, Philip McCallion, Lucy Esralew  & Rick Rader will use the planning period to develop, implement and evaluate a pilot telehealth program to address assessment, differential diagnosis, complex case consultation, care management/planning, environmental, caregiving and training issues influencing quality of care for people with DD and dementia. A manualized approach will emerge that includes reimbursement planning and will be widely disseminated.

University of Arizona Foundation on Behalf of Sonoran UCEDD, Tucson, AZ

Grant Amount: $50,000Grant Date: January 2015

The Sonoran UCEDD and the Arizona Telemedicine Program (ATP) will bring stakeholders together to assess needs and develop a plan to improve health for adults with DD by providing telemedicine specialty and subspecialty services in rural and underserved communities in Arizona.  Addressing the documented community concerns regarding inability to obtain subspecialty care due to distance and lack of transportation, we will concentrate our efforts on Arizona’s Hispanic border communities and American Indian Reservations.   We will assess the areas of greatest community need for telemedicine services; bring together health care providers in Tucson with the target communities to plan for providing telemedicine and develop a comprehensive implementation plan.  Plan will include mechanisms for telemedicine billing and payment; necessary accommodations for patients with disabilities; and evaluation of both the effectiveness of the intervention and the improvement in patient health.

Community Dental Services, Inc., Albuquerque, NM

Grant Amount: $26,559Grant Date: January 2015

In collaboration with the University of New Mexico Dental Services (UNMDS), Community Dental Services, Inc. (CDS) proposes to develop telemedicine services for adults with intellectual and developmental disabilities in New Mexico. The purpose of the proposal is to provide necessary dental services to adults in the most appropriate setting by streamlining the process by which referrals to the UNMDS Ambulatory Surgery Center (ASC) are made. A telemedicine program will be developed that will allow for adults with I/DD identified as needing care that is beyond the capacity of their dental home to be screened. .Local dentists will engage in real time video conference communication with specialists at UNMDS to determine the best treatment options for each patient Screening will allow for a determination to be made regarding whether care should be provided at their dental home, UNMDS ASC for sedation dentistry, or to the main UNM Hospital Operating Center for general anesthesia.

American Academy of Developmental Medicine and Dentistry (AADMD), Prospect, KY

Grant Amount: $75,000Grant Date: January 2015

Funds will support the AADMD annual education conference for the next 3 years ($25,000/year for three years) to address the general lack of education of physicians, dentists and other healthcare professionals with respect to the care of adults with intellectual and developmental disabilities. The AADMD annual conference provides a forum in which national leaders in multiple clinical disciplines, researchers, students and policy makers can come together to exchange ideas, learn best practices, forge working relationships and create new directions for the future of healthcare.

Kaiser Foundation Research Institute (KFRI), a Division of Kaiser Foundation Hospitals, Oakland, CA

Grant Amount: $100,000Grant Date: September 2014

Children and adults with autism spectrum disorders (ASD) have increased rates of medical and psychiatric co-morbidities. The transition from pediatric to adult care is particularly problematic for this population. This two year project will 1) determine barriers and facilitators of a smooth transition from pediatric to adult care for patients with ASD, 2) develop tools and health care delivery processes to improve the transition, and 3) pilot test these tools and processes. Study findings will contribute to the development of strategies that improve the transition of youth with ASD from pediatric to adult care, and ultimately improve the quality of health care delivered to and the health status of adults with ASD.

The Office of Developmental Primary Care, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2014

The Office of Developmental Primary Care (ODPC) at UCSF was granted funding to maintain current training activities for service providers, caregivers, health professions trainees, and clinicians to support care for the adult I/DD community. The funding also will engage multiple stakeholders to build capacity of community-based health care services within California.

The ARC San Francisco, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2014

Funds were awarded to The Arc of San Francisco to expand and enhance its Health Advocacy Services for adults with I/DD.   The expansion includes hiring key programmatic staff to implement quality and process improvements that ultimately improve health outcomes. The Arc also will hire additional Health Advocates and an RN clinical case manager to act as a key liaison with clients’ medical providers.

Autism Self Advocacy Network (ASAN), Washington, DC

Grant Amount: Grant Amount: $300,000Grant Date: September 2014

Autistic Self Advocacy Network (ASAN) was granted funding over three years ($100,000/year) to support the health care initiatives of the ASAN Disability Policy Center. Four health policy tool kits focusing on different aspects of health care for persons with I/DD will be created each year during the grant period. Additionally, ASAN will continue to disseminate and expand access to existing health policy materials.

Starr Center on Intellectual and Developmental Disabilities , Brandeis University, Waltham, MA

Grant Amount: $40,000Grant Date: May 2014

Funds were awarded to Brandeis University for a planning grant to design a nurse practitioner model for delivering primary and coordinated care to adults with disabilities. This project is a collaborative effort between the Brandeis Starr Center, CLASS. a day habilitation agency, University of Massachusetts at Lowell School of Nursing, and state agencies. Products will include a logic model of the intervention and materials for training nurses to provide care and service coordination.

Westchester Institute for Human Development, Valhalla, NY

Grant Amount: $55,877Grant Date: May 2014

WIHD was granted funding over three years for their Family Medicine Resident Rotation project. They will develop, implement and evaluate training on Developmental Medicine for their medical school residents. This training will include an elective rotation in their adult medical outpatient clinic, an annual workshop for first year residents, and two Developmental Medicine Grand Rounds per year at their Family Medicine Residency Program.

JFK Partners, UCEDD and LEND, University of Colorado, Aurora, CO

Grant Amount: $50,000Grant Date: January 2014

A  four year grant was awarded to JFK Partners for building upon an existing student group “Disability Dialogue” that is committed to examining health care disparities affecting individuals with developmental disabilities.   This funding will serve to provide national affiliation and structure, incentivize students during their years of preparation, and solidify community partnerships. 

Sonoran UCEDD, Tucson, AZ

Grant Amount: $50,000Grant Date: January 2014

A four year grant was awarded to the Sonoran UCEDD for their “Arizona Youth in Transition” project.  The Sonoran UCEDD will work with the University of Arizona College of Medicine and their established patient centered medical home for adults with developmental disabilities to increase the capacity of future and current health care providers to facilitate effective transitions from pediatric to adult health care for youth with DD. This will be accomplished through building a strong inter-professional AADMD student chapter, identifying needed skills, creating curriculum and providing targeted technical assistance. 

University of Alaska Center for Human Development, UCEDD and LEND, Anchorage, Alaska

Grant Amount: $50,000Grant Date: January 2014

Funding was provided over four years for their “Improving Healthcare for Adults with IDD in Alaska“ project.    This project will use a multi-pronged approach to improve healthcare services for adults with I/DD in Alaska by:  developing training and resources for healthcare providers; increasing student awareness of the healthcare needs by establishing a student chapter of the AADMD; and providing health promotion materials to individuals and families/caregivers.  

University of Rochester’s UCEDD and LEND, Rochester, NY

Grant Amount: $50,000Grant Date: January 2014

Funding was provided for their “ Special Olympics Team Trainer Program.”  The University of Rochester and Special Olympics of NY will collaborate to implement and test a Team Trainer Program, where health care students will be partnered with Special Olympic athletic teams to increase athletes’ participation in health care screenings, support coaches, facilitate follow-up care with healthcare providers, and incorporate health and wellness activities into team trainings. 

Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $75,000Grant Date: September 2013

A grant was awarded to ASAN to support the development of the ASAN Disability Policy Center.  The policy center will provide resources to advocates on key policy issues impacting the intellectual and developmental disability community, with a special emphasis on addressing health disparities and the quality of both health care and long term services and supports for the I/DD community.

Office of Developmental Primary Care (UCSF), San Francisco, CA

Grant Amount: $75,000Grant Date: September 2013

Funds were awarded to provide continued support to ODPC to build primary care health care infrastructure for adults with developmental disabilities. Through this grant, ODPC will engage self-advocates, parents and disability advocacy organizations in policy advocacy and will further their clinical, operational and training activities.

Rose F. Kennedy UCEDD, Albert Einstein College of Medicine of Yeshiva University, Bronx, NY

Grant Amount: $50,000Grant Date: September 2013

A three year grant was awarded to the RFK UCEDD to develop a formal Care Coordination model where case management services will be integrated in the Health Home model.  This project is a collaboration between the RFK UCEDD and the  Developmental Disabilities Health Alliance of New York. 

University of Chicago, Chicago, IL

Grant Amount: $40,000Grant Date: May 2013

 A grant was awarded to develop a collaborative health care model to provide mental health care services within a primary care setting. As part of this model, a dedicated case manager will be hired to strengthen care coordination and to develop a neuropsychological battery of assessments.

The Achievable Foundation, Culver City, CA

Grant Amount: $90,000Grant Date: May 2013

Funds were awarded to provide support to the Achievable Clinic during their first year of operation. The clinic is a community health center developed to provide culturally appropriate, coordinated, high quality and comprehensive primary and specialty care services in a medical home setting for individuals with developmental disabilities.

Coalition for Compassionate Care of California, Sacramento, CA

Grant Amount: $31,440Grant Date: May 2013

 Funding was provided to CCCC to perform an environmental scan and make recommendations relating to conservatorship issues in California for healthcare decision making for adults with developmental disabilities.

The Elizabeth M. Boggs Center, New Brunswick, NJ

Grant Amount: $50,000Grant Date: January 2013

A planning grant was awarded for the development of “The New Jersey Developmental Disabilities Transition to Adult Health Care Forum”.  This collaborative process will focus on building the capacity of the adult health care system and developing an action blueprint for transition to adult health in New Jersey.

The Vanderbilt Kennedy Center, Nashville, TN

Grant Amount: $50,000Grant Date: January 2013

Funding was provided for the creation of an electronic toolkit for primary care of adults with developmental disabilities.  This online resource will provide health care practioners with additional resources to accurately assess and treat their patient population.

Westchester Institute for Human Development, Valhalla, NY

Grant Amount: $50,000Grant Date: January 2013

A grant was awarded to develop and field test training modules designed to guide parents and their young adult children with developmental disabilities through successful transitions from pediatric to adult health care.  This online tool will address a wide variety of choices faced during the transition period.

Kaiser Permanente, Oakland, CA

Grant Amount: $60,000Grant Date: September 2012

A research grant was awarded to the Kaiser Foundation to utilize their electronic health care records to look at the prevalence of adults with autism.  In addition, the data will be evaluated to investigate comorbidities, utilization of medications, and access to primary health care.

Office of Developmental Primary Care (UCSF), San Francisco, CA

Grant Amount: $100,000Grant Date: September 2012

A grant was provided to UCSF’s Office of Developmental Primary Care to support the development of self-advocate/caregiver leadership in the area of health care access.  This grassroots effort will educate and engage thought leaders in order to improve heath care delivery.  Training and policy materials will be developed that reflect the priorities, preferred strategies, and values of the developmental disability community.

UCSF Office of Continuing Medical Education, San Francisco, CA

Grant Amount: $30,000Grant Date: September 2012

A three year grant was provided to the Office of CME at UCSF to underwrite the costs of their annual conference titled, “Developmental Disabilities:  An Update for Health Professional.”  This two day event provides the latest information on health issues affecting those with developmental disabilities.

American Academy of Developmental Medicine and Dentistry (AADMD),  

Grant Amount: $150,000Grant Date: May 2012

Funding was provided to create and promote a national “gold standard” curriculum in the care of adults with intellectual and developmental disabilities (IDD) to primary care residency programs, implementation of the curriculum in pilot residency programs, development of a companion textbook, and hosting two webinars on their website.  The webinars will focus on the topics of dementia and emergency care and their impact on individuals with IDD.

Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $50,000Grant Date: May 2012

A grant was provided to ASAN to develop a policy brief series to educate the disability professional community and the public about healthcare barriers, challenges, and needs of adults and youth with intellectual and developmental disabilities. These briefs will inform discussions and solution development around best practices and policies to improve service-delivery for people with intellectual and developmental disabilities to foster their wellbeing and quality of life.

Oak Hill, Hartford, CT

Grant Amount: $16,000Grant Date: May 2012

Oak Hill’s Relationship and Sexuality Education division will use our grant to create a CD-ROM with accompanying manual to increase health care provider competency to address reproduction and sexual health with individuals with intellectual and/or developmental disabilities.  These best teaching practices and additional resources will be available as print material and on their website.

Coalition for Compassionate Care of California, Sacramento, CA

Grant Amount: $35,000Grant Date: September 2011

A grant was awarded to the Thinking Ahead project, a program that addresses end of life issues with the use of materials and webinars for adults with developmental disabilities and their caregivers. Funds were provided for the education of community care providers and healthcare professionals.

Disability Rights Education and Defense Fund (DREDF), Berkeley, CA

Grant Amount: $35,000Grant Date: September 2011

DREDF received funding for their campaign for healthcare justice.  The “Health Care Stories Project” will document the challenge of accessing healthcare highlighting some of the barriers and stereotypes faced by individuals with developmental disabilities.  These brief video stories will place a human face on real issues that are poorly understood in the medical community.

East Bay Innovations, San Leandro, CA

Grant Amount: $40,000Grant Date: September 2011

Adults with developmental disabilities experience a high turnover rate of caregivers.  As a result, they are frequently put in the position of communicating their needs and preferences to staff, a process that can become both tedious and tiring.  East Bay Innovations was awarded a grant to develop a comprehensive video-based training program that will sensitively address all aspects of an individual customer’s care for new staff members, substitute staff members, and medical/hospital personnel.

The Achievable Foundation, Culver City, CA

Grant Amount: $40,000Grant Date: September 2011

Support was provided to the Achievable Clinic, a healthcare center that provides developmentally and culturally appropriate, comprehensive, high-quality and coordinated care to individuals with developmental disabilities.  Funds will be used to expand current services and create a model community-based care center for this population.

The Arc of San Francisco, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2011

Continued support was provides for the work of the Developmental Health Collaborative (University of California, San Francisco, Golden Gate Regional Center, Health Plan of San Mateo, The Arc of San Francisco) in their effort to address barriers in healthcare access for adults with developmental disabilities.

The Arc of San Francisco, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2009

The Arc was awarded a grant to continue their work with the University of California San Francisco’s Department of Family and Community Medicine, the Golden Gate Regional Center, San Francisco’s Department of Public Health and Health Plan San Mateo to develop models on how medical professionals are trained and public policy is influenced to affect the changes necessary to provide better health care for people with developmental disabilities.