2015 was a pivotal year for the Special Hope Foundation
Not only did we provide funding to a record number of organizations, but we issued a Telemedicine RFP for our Fall grant cycle, our first RFP since our inception. Telemedicine, or Telehealth, is the provision of medical or mental health care services using technological modalities in lieu of, or in addition to, traditional face-to-face methods.
This is part 5 of our Retrospective Series, a look back at the history of grants we have awarded over the years.
Special Hope Foundation 2015 Grants
Autism Self Advocacy Network (ASAN)
The 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, including the creation of 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.
The ARC San Francisco
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.
The Office of Developmental Primary Care
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.
Kaiser Foundation Research Institute (KFRI), a Division of Kaiser Foundation Hospitals
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:
- Determine barriers and facilitators of a smooth transition from pediatric to adult care for patients with ASD
- Develop tools and health care delivery processes to improve the transition
- 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.
Community Dental Services Inc.
cdsabq.com
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.
University of Arizona Foundation on Behalf of Sonoran UCEDD
The Sonoran UCEDD and the Arizona Telemedicine Program (ATP) strives to 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 Sonoran concentrated their efforts on Arizona’s Hispanic border communities and American Indian Reservations. They assessed the areas of greatest community need for telemedicine services; brought together health care providers in Tucson with the target communities to plan for providing telemedicine and develop a comprehensive implementation plan. The Plan includes 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.
Orange Grove Center
Orange Grove Center with Semo Healthcare and Slayback Health and expert consultants Seth Keller, Philip McCallion, Lucy Esralew and Rick Rader plan 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.
Special Care Dentistry Association
The SCDA will assemble a group of experts in the care of special needs populations and postgraduate dental education to:
- Study existing postdoctoral programs that provide training in the care of patients with special needs
- Envision an exportable construct that would serve as the framework for a new category of dental residency training program,
- Create comprehensive educational standards for such programs
- 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.
Funds were also provided for the sponsorship of the SCDA/iADH international educational meeting in Chicago in April, 2016.
American Civil Liberties Union Foundation, Inc.
The Disability Rights Program received a grant to 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, the ACLU aims 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.
The Achievable Foundation
Grant funding will 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 will 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.
People First of California
Special Hope Foundation funds helped offset the cost of the People First Statewide Gathering. The Gathering wass 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 served over 200 individuals and focus on health, because many of individuals are facing a number of issues that lead to them leaving unhealthy lives.
University of California Regents
Funds were provided for the sponsorship of the 15th Annual Developmental Disabilities: An Update for Health Professionals event.
American Academy of Developmental Medicine and Dentistry (AADMD)
Funding was awarded for the AADMD’s 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.
The Resource Exchange
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.
The Council on Developmental Disabilities
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.
Positive Exposure
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.
About the Special Hope Foundation
The Special Hope Foundation was created to provide financial support to organizations that promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.
We support programs that improve delivery of healthcare to adult customers with developmental disabilities and include at least one of the following:
- Improve health practitioner competency through education and/or training programs
- Address the current inadequate reimbursement system
- Advance formal care coordination including the utilization of trained support personnel/caregivers
- Increase public awareness regarding the inadequacies of developmentally disabled care to advance systemic change
- Social policy research
- Identify and overcome barriers to high-quality healthcare access
- General operating support is only considered for grantees that have previously utilized our project funding
Meet our Self-Advocate Advisory Committee! The committee reviews the proposals that the Foundation receives and provides input on whether or not applicants should receive funding, and whether a proposal is designed well for people with disabilities:
Stay tuned for more profiles of this incredible group of Self-Advocates.