Special Hope Foundation Grants from 2016

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’ve been looking back at the grants that we have awarded over the years, and in doing so, we’re seeing the possibilities for the future of healthcare for adults with disabilities. 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.

University of Utah Hospitals and Clinics

healthcare.utah.edu/uni/home/ 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 its ability to provide cost-effective care for individuals with IDD. During another grant cycle in 2016, The Special Hope Foundation awarded another grant to The University of Utah Hospitals and Clinics: 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, the program 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.).

University of New Hampshire Institute on Disability/UCED

iod.unh.edu/Home.aspx 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.

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

https://www.einstein.yu.edu/centers/childrens-evaluation-rehabilitation/rose-f-kennedy-ucedd/ DD Health Home is integrated model of health care (primary and specialty care, MH, case management) for people with I/DD. The program will evaluate DD Health Home from three perspectives:

  1. Patient outcomes
  2. Patient satisfaction
  3. Cost efficiency.

Through its 6 community based sites, the DD Health Alliance has collected extensive data from more than 1000 I/DD patients in N.J. and N.Y. RFK UCEDD will aggregate and analyze data on I/DD patients including presentation characteristics and comorbidities, functional health, MH status, satisfaction of care and health utilization and costs.

University of Arizona Foundation for the benefit of Sonoran UCEDD

uafoundation.org 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. The project 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.

Vanderbilt University

vanderbilt.edu/ 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. The project will measure outcomes, and provide a replicable model to reduce referrals to specialists for routine visits, thereby increasing access, cost-effectiveness, and quality care.

Cleveland Clinic

my.clevelandclinic.org This project aims to improve health services delivery to adults with Down syndrome using 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.

Down Syndrome Connection of the Bay Area

dsconnection.org 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 an emphasis on adults and older adults.

Coalition for Compassionate Care of California

coalitionccc.org 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.

JVS – Tri-County Dental Program

jvsdet.org 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.

Massachusetts General Hospital

luriecenter.org 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 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.

Office of Developmental Primary Care – UCSF

odpc.ucsf.edu 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.

Special Olympics

specialolympics.org 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.

Curious about grants from previous years? Find them at the links below: 2011 2012 2013 2014 2015