Comprehensive health care for adults with developmental disabilities
The Special Hope Foundation has 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. Today we end our retrospective with grants awarded–so far–in 2017.
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.
Association of University Centers on Disabilities
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.
The University of North Carolina at Chapel Hill
This project seeks 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 ultiately in other US states. Using both didactic and experiential components, they 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, and intend to eventually extend this opportunity to other APPs such as Physician’s Assistants.
The Arc of the United States
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.
UC Regents
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.
University of Massachusetts Medical School-Shriver Center
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. The orgnization will develop, implement, and evaluate a pilot nursing curriculum for its feasibility, efficacy, and sustainability. Using pre- and post-tests, they 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.
Rush University Medical Center
With AHRQ R13 Conference grant funding, Rush University Medical Center in collaboration with the University of Illinois at Chicago Department of Disability and Human Development (UIC DHD) will hold the Partnering to Transform Health Care with People with Disabilities (PATH- PWD) Conference. Participants will address Improving Acute, Primary, and Transitional Health Care with Individuals with Disabilities.
University of Rochester
Communication is central to effective health care. Clear and thorough language interpretation facilitates care of individuals from traditionally under-served minorities, but the special communication elements required to serve people with Intellectual and Developmental Disabilities (IDD) are not part of interpreter training, nor are cultural differences in perception of developmental disabilities. This project will train Spanish language medical interpreters in these missing elements.
Virginia Commonwealth University Foundation
The Partnership for People with Disabilities, Virginia’s University Center of Excellence in Developmental Disabilities, aims to improve access to positive healthcare outcomes for people with Intellectual and Developmental Disabilities (I/DD) by developing, piloting and refining a curriculum, Multicultural Agility in Healthcare for the I/DD Population. A 10 member multidisciplinary steering committee to include people with I/DD, Leadership Education in Neurodevelopmental Disabilities trainees, parents of youth with I/DD and healthcare professionals will review existing cultural competency training across the medical/dental field and design a pilot delivered by diverse people with I/DD.
University of Alaska Center for Human Development
The goal of this project is to reduce health disparities for intersectionally diverse Alaskans with IDD, through training a more disability positive and culturally competent healthcare workforce. Co-trainers with and without intellectual/developmental disabilities will be recruited to tailor and deliver trainings to current and future healthcare providers.
Special Care Dentistry Association
The Special Care Dentistry Association (SCDA) is an association of dentists and dental hygienists, care givers and supporters who are involved in the lives and care of patients with special needs. SCDA sponsors an annual, international dental educational conference every year. We are seeking funds to support internationally-recognized speakers for our keynote and other addresses in March, 2017 in Charlotte, North Carolina.
Down Syndrome Medical Interest Group-USA
The DSMIG-USA Annual Symposium is a major activity of DSMIG-USA. In the United States, the symposium is a unique forum for health care professionals who care for individuals with Down syndrome to learn about new clinical knowledge and best practice care recommendations from national experts in the field. Attendees include DSMIG-USA members from across the US and also include international members. Clinicians attending represent a range of disciplines, with physicians making up more than 50 % of attendees. Attendance has been growing over time and we continue to engage in extensive outreach to invite non-members, including primary care clinicians, with particular emphasis on those working in the region where the conference is being held.
UC Davis Health
The University Center for Excellence in Developmental Disabilities (CEDD) will host the annual 1 day educational conference, “Summer Institute on Neuro-developmental Disabilities” on July 28, 2017. There are more than 30,000 individuals with developmental disabilities in the area this event serves. The focus of the Summer Institute is to help individuals & support teams keep pace with the latest advances in neurodevelopmental research & current standards for best practices in prevention, assessment, treatment, & support services. CEDD requests your support to provide up to 40 scholarships so that more students, self-advocates, & families have access to participate in this conference.
Visit the Special Hope Foundation Blog to learn more about past grantees and about our Self-Advocate Advisory Committee.