WITH Foundation logo


Palo Alto, CA, October 17, 2018 — The WITH Foundation is pleased to announce that close to $258,000 will be awarded to six organizations as a result of their previous open cycle. These grants will fund a variety of programs that promote comprehensive and accessible healthcare for adults with developmental disabilities.

“It is a privilege to support these efforts as they work to enhance healthcare delivery models, increase the understanding of supported decision-making, and/or address critical issues for adults with intellectual and developmental disabilities” said Ryan Easterly, Executive Director of the WITH Foundation.

The following projects were selected for funding:

The Center for Public Representation: The Center for Public Representation, in collaboration with the medical community and other stakeholders, was provided funding to address the reluctance of healthcare professionals to accept Supported Decision Making (SDM) as a mechanism to enable people with disabilities to work with supporters to make decisions about their health. The Project seeks to ensure individuals with disabilities retain their right to exercise choice regarding their own healthcare and are not denied quality healthcare because practitioners decline to take the time to listen, understand and respect their SDM agreements and networks.

Disability Rights Education and Defense Fund (DREDF): Healthcare access is a core DREDF program that aims to reduce health and health care disparities and improve health outcomes for people with I/DD through collaborations with clinics and health plans, and policy advocacy. The organization was awarded funding to investigate the presence of accessible medical equipment in primary care offices, to interview patients with I/DD and clinic staff to learn if the requested and legally required accommodations were in place and to improve care experiences. DREDF will also serve on a task force developing procedures that ensure managed healthcare providers are accessible and can accommodate disabled patients.

National Council on Independent Living: The National Council on Independent Living was awarded funding to develop a professionally produced video with an accompanying discussion guide on sexual health aimed at consumers of Centers for Independent Living (CILs) with intellectual and developmental disabilities(I/DD). The video will cover a variety of topics, ranging from basic sexual education to disability-specific sexual questions and needs. NCIL will subcontract with Rooted in Rights, a program of Disability Rights Washington, to produce high-quality video content. The completed video and discussion guide will be distributed to CILs throughout the country through NCIL’s national network and be available as a resource for CIL staff to use with consumers with I/DD.

The Arc of the United States: The Arc of the United States was provided funding to build on their previous work around women with intellectual and developmental disabilities (I/DD). The organization’s National Center on Criminal Justice and Disability (NCCJD) and the Board Resource Center (BRC) will expand the Talk About Sexual Violence project to include materials for men with I/DD. Materials will be co-created and reviewed by survivor self-advocates. It will include an orientation guide, plain-language videos, an outreach guide, and tools for meeting with health care professionals. The Arc will also produce instructional videos and a webinar for healthcare professionals. These materials will be exhibited at national healthcare conferences and added to existing online resources.

The Achievable Foundation: The Achievable Foundation, in collaboration with West Los Angeles College (WLAC), was awarded funding to enhance WLAC’s medical assistant (MA)training program.  Select students will complete a practicum at the Achievable Health Center to gain experience and expertise in caring for patients with intellectual and developmental disabilities (I/DD). The practicum will also serve to expose MAs to chronic care management. Further, Achievable and West LA College will create an educational curriculum for MA training that can be utilized and disseminated to increase the number of MAs trained to work with patients with I/DD.

AXYS: Individuals with extra X and Y chromosomes often experience lifelong physical and developmental challenges. Most healthcare providers are unfamiliar with the medical needs of these individuals, particularly as they transition to adulthood. AXYS, an advocacy organization for individuals with supernumerary sex chromosome aneuploidy (SCA), was provided funding for the establishment of interdisciplinary adult clinics at academic medical centers building on the model of the clinics that AXYS has established serving pediatric patients.

# # #

WITH Foundation promotes comprehensive and accessible healthcare for adults with developmental disabilities.


# # #

Press Contact:  Laura Shumaker
Director of Communications, WITH