Four UCEDDs Receive Nearly $200,000 in Grants from the Special Hope Foundation

Projects will study evidence-based cost and quality of care research for adults with developmental disabilities

February 23, 2016

(Palo Alto, CA) -- The Special Hope Foundation is pleased to announce that four University Centers for Excellence in Developmental Disabilities (UCEDDs) are among six organizations selected for funding of projects researching questions of cost and quality in provision of healthcare services to adults with intellectual and developmental disabilities. All applications were carefully reviewed and considered by the Foundation's Board and staff as well as the Special Hope Foundation's Self-Advocate Advisory Board and medical providers.

"In order to ‘move the needle' on reimbursements and service inclusion with healthcare payers, the field needs opportunities to conduct evidence-based research on questions of cost effectiveness and quality improvement. The proposals we received will all contribute to the field." said Lynne O'Hara, Executive Director of the Special Hope Foundation. "We anticipate the resulting data will improve healthcare policy-making to advance issues important to people with disabilities."

Following are the projects funded and the purposes of each grant:

  • University of Arizona Foundation on Behalf of the Sonoran UCEDD: 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 funded project will compare quality and cost outcomes of 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 (UCEDD) at Montefiore Health Systems: DD Health Home is integrated model of health care (primary and specialty care, mental health, case management) for people with I/DD. This funded project will evaluate the DD Health Home model from the perspectives of patient outcomes, patient satisfaction, and cost efficiency. Through its 6 community based sites, the DD Health Alliance has collected extensive data from more than 1,000 I/DD patients in New Jersey and New York. The RFK UCEDD will aggregate and analyze data on I/DD patients including: presentation characteristics andcomorbidities, functional health, mental health status, satisfaction of care and health utilization, and costs. Due to the scope and size of the database, additional research questions may also be studied.
  • University of New Hampshire Institute on Disability/UCED: People with intellectual/developmental disabilities (I/DD) 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 I/DD and behavioral health needs receiving START services (intervention) with peers receiving usual care (control), examining the impact of START services on psychiatric emergency room visits and inpatient psychiatric stays.
  • Vanderbilt Kennedy Center at Vanderbilt University: The Vanderbilt Kennedy Center 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 I/DD and will build on and include content from the I/DD 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 I/DD. 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.

The two grants funded outside the UCEDD network were:

  • University of Utah Hospitals and Clinics: 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 (I/DD), 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 I/DD.
  • Cleveland Clinic: 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 medicine, a clinical pharmacist, and a representative of the disability 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.

# # #

The mission of the Special Hope Foundation is to promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.