Young man with glasses in black suit

Ohio University Foundation, Athens, OH

Grant Amount: $40,000Grant Date: October 2023

www.ohio.edu/medicine

Building Disability Competency in Osteopathic Medical Students in Rural Ohio

The Ohio University Heritage College of Osteopathic Medicine (OU-HCOM) in Athens, Ohio will Build Disability Competency in Osteopathic Medical Students in Rural Ohio. The overarching goal of the project is to improve future healthcare professionals’ disability competency through education and training. This will be accomplished by training first and second year medical students to improve stigma and bias towards people with intellectual and developmental disabilities (I/DD) who are seen in clinics. Medical students will also learn more about social policy research and barriers to quality healthcare access during training sessions.


New Disabled South, Atlanta, GA

Grant Amount: $50,000Grant Date: October 2023

www.newdisabledsouth.org

Expanding HCBS waivers for people with intellectual and developmental disabilities

New Disabled South is working to expand HCBS waivers for people with intellectual and developmental disabilities in Alabama, Georgia, North Carolina, South Carolina, and Tennessee. New Disabled South is the first and only regional disability organization in the United States. Through direct actions at the state capitol, story collection and amplification, comprehensive media campaigns, and targeted outreach to elected officials, New Disabled South is working to draw attention and support to this crisis, expand the number of intellectual and developmental disability Home and Community Based Services (HCBS) waiver slots funded and eliminate or decrease the waiting lists.


Institute on Disabilities at Temple University, Philadelphia, PA

Grant Amount: $50,000Grant Date: October 2023

disabilities.temple.edu

Mapping a strategy to improve healthcare for sexual and gender minorities with disabilities

The Institute on Disabilities at Temple University will map a strategy to improve healthcare for sexual and gender minorities with disabilities with a qualitative needs assessment in collaboration with a community advisory board to identify barriers to healthcare access for sexual and gender minorities with intellectual and developmental disabilities. The assessment will also identify areas for quality improvement and community-generated priorities for change. The assessment will inform the content of a novel training for healthcare providers who work with sexual and gender minorities with intellectual and developmental disabilities.


Institute for Exceptional Care, Washington, DC

Grant Amount: $150,000Grant Date: October 2023

www.ie-care.org

IDD Advocate Corps

The IDD Advocate Corps is a grassroots advocacy movement anchored by the Institute for Exceptional Care with a goal of creating a dynamic community to empower and grow disability leaders within healthcare organizations. In this community, self-advocates, healthcare professionals, and healthcare professionals with intellectual and developmental disabilities are co-developing values, goals, and infrastructure needed to influence organizations across healthcare sectors to make the system safe and inclusive for people with I/DD. Intersectional identities and perspectives are represented in Corps membership. The movement will equip change agents with resources, shared learning, tools and training for I/DD awareness and inclusion across the healthcare industry.


Fort Wayne Medical Society Foundation Inc, Fort Wayne, IN

Grant Amount: $50,000Grant Date: October 2023

www.fwmep.edu/

Enhancing Inclusive Educational Experiences for Primary Care Learners in a Safety Net Clinic

 

The Fort Wayne Medical Education Program will be enhancing inclusive educational experiences for primary care learners in a safety net clinic. The project will focus on expanding an educational curriculum to enhance resident education regarding adults with developmental disabilities.


Consumer Technology Association Foundation, Arlington, VA

Grant Amount: $58,000Grant Date: October 2023

www.cta.tech/Who-We-Are/CTA-Foundation

Hackathon for Healthcare Technology: Accessible Care for All

The Consumer Technology Association Foundation will create a two-part Hackathon for Healthcare Technology: Accessible Care for All, beginning with a virtual accessibility roundtable and concluding with a hackathon onsite at 2025 CES Conference. The event will bring together disability advocates and nonprofit organizations with the consumer healthcare technology industry to identify and begin to solve healthcare challenges for people with intellectual or developmental disabilities.

 


Activating Change / Vera Institute of Justice, Wilmington, DE

Grant Amount: $50,000Grant Date: October 2023

www.activatingchange.org

The Survivor Advocacy Project

The Survivor Advocacy Project from the Activating Change project of the Vera Institute of Justice is working to remove barriers to services related to violent victimization and create new pathways to healing by helping disability organizations become more survivor-centered. The project also helps victim services organizations and criminal legal, health care, and other systems integrate a disability lens, bringing these fields together.


Wiki Education, Chico, CA

Grant Amount: $55,000Grant Date: June 2023

wikiedu.org

Improving Information on Disability Healthcare on Wikipedia

Wiki Education will improve health and disability-related articles on Wikipedia, the most utilized healthcare resource in the world. In their Wiki Scientists professional development courses, they train experts to update and improve important topics on Wikipedia, ensuring that the world’s largest free information resource is as equitable and accurate as possible. With this grant, they will support 45 experts as they systematically improve between 30 and 40 high-value Wikipedia articles about disability healthcare.


University of Colorado Denver, Aurora, CO

Grant Amount: $55,000Grant Date: June 2023

disabilityequitycollaborative.org

Development of standards and implementation guides to advance disability equity in healthcare

The aim of the project is to develop standards and associated implementation guides for healthcare organizations that will inform the provision of health care accommodations for adults with intellectual and developmental disabilities. Through a stakeholder engaged process, they will develop two sets of standards and implementation guides: 1) establishing a disability accessibility program, and 2) developing and implementing an effective communication program. The guides will include resources and tools, such as example presentation templates directed at healthcare leadership for advocating for equitable care adults with IDD. We will disseminate the guides via the established Disability Equity Collaborative.


The National Alliance to Advance Adolescent Health, Washington, DC

Grant Amount: $55,000Grant Date: June 2023

thenationalalliance.org

A Five State Case Study of Black Young Adults with Intellectual and Developmental Disabilities Aging Out of Medicaid, CHIP, SSI, and Title V

The National Alliance to Advance Adolescent Health seeks to identify inequities facing Black young adults with people with intellectual and developmental disabilities aging out of Medicaid, CHIP, SSI, and Title V in five states. This project expands on our Packard-funded project, “Barriers, Inequities, and Policy Options for Young Adults with Special Needs Aging Out of Public Programs.” It enables us to focus greater attention on young adults with intellectual and developmental disabilities by adding new key informant interviews with state officials and legal and disability advocates and conducting additional program analyses. We will also elicit the experiences of Black young adults with intellectual and developmental disabilities and their caregivers. A report will be widely disseminated and a webinar with advocates will be conducted.


The Association for Successful Parenting, Baltimore, MD

Grant Amount: $55,000Grant Date: June 2023

achancetoparent.net

Training Materials for Health Providers to Effectively Support Parents with Intellectual Disabilities

The Association for Successful Parenting (TASP) will develop 5 self-paced training modules for healthcare professionals on supporting families in which the parents have an intellectual and developmental disability (IDD) or learning difficulty. Self-advocates and health providers will provide input on content and may include the following: a) identifying parents with IDD, b) supporting the chance to parent, c) effective communication and support strategies, d) obtaining follow-through from parents for health recommendations, e) utilizing reasonable accommodations. The intent of module creation would be future
dissemination on a national level using widely accepted e-learning platforms.


Down Syndrome Connection of the Bay Area, Danville, CA

Grant Amount: $35,000Grant Date: June 2023

dscba.org

Mental Health Alliance

The Mental Health Alliance trains and supports the mental health community so that people with intellectual or developmental disabilities can better access high quality mental health services. We are providing training to mental health professionals in working with adults with Down syndrome, autism, and other intellectual and developmental disabilities and their families; Alternative & Augmentative Communication (AAC) training and support that clinicians need to effectively serve this population; an array of treatment modalities; and training by mental health clinicians in best practices to our program staff.


Autistic Self Advocacy Network, Washington, DC

Grant Amount: $195,000Grant Date: June 2023

autisticadvocacy.org

Disability Policy Center

The Autistic Self Advocacy Network (ASAN) will continue developing their Disability Policy Center as a driving force in policy discussions regarding healthcare and people with intellectual and developmental disabilities. The center’s work focuses on providing self advocates with accessible information and resources regarding healthcare. This work includes resources responding to current crises like COVID-19 and lack of access to reproductive care, as well as research partnerships that improve healthcare access and delivery.


Family Voices, Lexington, MA

Grant Amount: $50,000Grant Date: January 2023

www.familyvoices.org

Advancing the Quality of Health Care Transition for Black Autistic Adolescent Girls 

Research shows that girls are less likely than boys to receive a timely diagnosis of autism, and that Black children are more likely to experience misdiagnosis and extremely delayed autism diagnosis. Autistic Black girls, at the intersection of these disparities, experience the impact of both. This project will engage Black women self-advocates and family advocates to develop and disseminate educational materials about barriers to diagnostic supports for Black girls and women with autism, as well as recommendations to address the unique needs of this intersectional population across the lifespan. 


Rowan University Foundation, Glassboro, NJ

Grant Amount: $50,000Grant Date: January 2023

www.alumni.rowan.edu

Creating Educational Materials for PCPs in Support of Reproductive Health Equity for Women with I/DD 

The RISN Center proposes a project to develop and distribute educational materials, including a Creating Accessible Reproductive Exams and Services (CARES) Best Practices Manual for Primary Care Providers and an accompanying presentation. These materials will be distributed to at least 200 PCPs and 400 medical students during the project period. All educational materials will be developed in collaboration with self-advocates with I/DD. The project partners with the Arc of New Jersey and Virtua Pride Primary Care.


The University of Texas Rio Grande Valley Foundation, McAllen, TX

Grant Amount: $50,000Grant Date: January 2023

www.trgvfoundation.org

Investigating knowledge gaps of Primary Care Providers when Serving Pregnant Women with I/DD 

Pregnant women with I/DD experience greater pregnancy risks and poorer outcomes. These disparate outcomes may be due, in part, to primary care providers (PCPs) lacking the knowledge and skills to provide quality care for this population. The study aims to identify and document barriers in quality prenatal care experienced by women with I/DD and PCPs’ knowledge and skills gaps when providing services to pregnant women with I/DD. The project will conduct in-depth interviews with 30 women with I/DD (and their support persons if applicable) who are currently, or have recently, been pregnant and sought prenatal care, and 30 PCPs who have cared for such patients. 


National Down Syndrome Society, Washington, DC

Grant Amount: $50,000Grant Date: January 2023

www.ndss.org/

NDSS Primary Care Provider Guide to Women’s Health and Down Syndrome 

The purpose of this project is to engage with primary care providers (PCPs) to address healthcare inequities for women with Down syndrome. This information will be provided in a written guide and an eLearning course, allowing PCPs to choose the resource that best suits their learning style. The resources will be co-created by professionals in the medical community and adult women with Down syndrome to ensure there is a balanced and equitable approach to topics and recommendations. After reading the guide or taking the course, PCPs will understand how to treat patients with Down syndrome who have nuanced healthcare needs and will use the tools learned to improve their patient-centered care. The project partners with the Down Syndrome Medical Interest Group (DSMIG), the American Academy of Developmental Medicine & Dentistry (AADMD), and Kramer Davis Health.


University of South Florida Foundation, Inc., Tampa, FL

Grant Amount: $30,000Grant Date: December 2022

giving.usf.edu

The Mpox Educational Videos on Social Media for Adults with Intellectual Disabilities project will develop three brief educational videos about Mpox, the Mpox vaccine, and Mpox treatment. The videos will feature both graphics and dialog that are easily digestible. The creators of these videos are experts in videography, visual design, health communication, special education, and adolescent medicine. The videos will use digital storytelling to explain the science of Mpox, the Mpox vaccine, and Mpox treatment through narrative and role playing by self-advocates and the team physician. The videos will be shared via Tik Tok, Facebook and Instagram. The team will also create and disseminate Mpox-related fact sheets to local affiliated disability networks. 


Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $30,000Grant Date: December 2022

autisticadvocacy.org

The Autistic Self Advocacy Network (ASAN) Mpox Easy Read and Plain Language Project will produce four  written resources providing Mpox education. Each resource will be available in plain language, picture-assisted Easy Read, and video format, in both English and Spanish. They will also host two webinars in plain language. These resources and webinars will provide clear information about spread of the Mpox virus, vaccine access, and treatment and isolation procedures. The resources will include risk reduction practices for a variety of circumstances including safer sex and touch practices, precautions for congregate living, and working with support staff. Additionally, the materials will explain how Mpox spreads differently than COVID-19 and why different precautions are needed, and will correct misinformation that depicts the virus as a sexually transmitted infection and address the homophobia and transphobia around discussion of the virus. 


Health Access, Sacramento, CA, Sacramento, CA

Grant Amount: $30,000Grant Date: December 2022

health-access.org

Health Access’s California LGBTQ Health and Human Services Network will develop educational materials related to Mpox, the Mpox vaccine, and Mpox treatment to better serve LGBTQ+ adults with intellectual and developmental disabilities. These materials include factsheets, social media graphics, and short informational videos that will include information on Mpox, dispel any misinformation about the Mpox vaccine, share prevention tactics against Mpox, and share resources on what people can do if they have Mpox. The Network will also partner with community-based organizations that provide respite support to people experiencing homelessness to disseminate materials to people who are unhoused and address the digital divide that often keeps communities from accessing information. The short informational videos will feature LGBTQ+ people with IDD who have received the Mpox vaccine and share their experiences to help encourage others to get vaccinated. The videos will also include an expert from the California Department of Public Health talking about ways to stay safe from Mpox and how to access resources and the vaccine. Lastly, in an effort to dispel misinformation and end stigma, the videos will include the testimony of a person who had Mpox sharing their experience with others.


National Disability Rights Network, Washington, DC

Grant Amount: $50,000.00Grant Date: September 2022

www.ndrn.org

The National Disability Rights Network (NDRN) seeks to build on the mounting momentum generated by its work on equitable access to healthcare and pandemic protections throughout the COVID-19 crisis for Black, Indigenous, and People of Color with developmental disabilities. Each element of the proposed initiative, Decoding Discrimination and Sunstorm Stories Expanded, emphasizes the importance of informed consent, self-advocacy/determination, and protection against abuse/neglect. By raising public awareness and educating healthcare practitioners and centering self-advocates, NDRN intends to use the renewed funds to expand and enhance its current health equity work focused on people of color with I/DD.


Association of University Centers on Disabilities (AUCD), Silver Spring, MD

Grant Amount: $110,000.00Grant Date: September 2022

www.aucd.org/template/index.cfm

The Inclusive Medical Education Curricula Evaluation project is a mixed-method evaluation of inclusive adult medical and dental education curricula. Results will provide data on curriculum development expertise, representation of people with lived I/DD experience in curricula development and delivery, inclusion of transition from pediatric-to-adult healthcare content, uptake and implementation in both coursework and clinical settings, current status of curricula and quality improvement, open access status, and engaged partners. The project’s results will inform development of a manuscript to be submitted for publication and contribute to available literature on inclusive medical education.


Family Voices, Lexington, MA

Grant Amount: $50,000Grant Date: September 2022

www.familyvoices.org

Through the Meeting Health Care Transition (HCT) Needs of Youth with ID/DD Who Have Been Incarcerated project, Family Voices and key partners will enhance the work of the National Health Care Transition Resource Center for Y/YA with ID/DD, a 5-year grant from the Administration for Community Living, to learn more about the needs of this population, provide leadership opportunities for young adults with I/DD who have been incarcerated, and develop resources on healthcare transition for youth and young adults.The project will disseminate a brief in print and through a webinar.


Rutgers University Foundation, New Brunswick, NJ

Grant Amount: $50,000.00Grant Date: September 2022

www.support.rutgers.edu

The Mental Health & Aging Across the Life Span for Adults with IDD project aims to increase healthcare providers skills to provide culturally appropriate and effective preventative, behavioral, and mental healthcare, while addressing the social determinants impacting the health of adults with I/DD. Through the I/DD ECHO training, conducted via interactive Zoom sessions, healthcare providers will receive training on effective communication techniques and best practice interventions to support a comprehensive approach to care across the lifespan of adults with I/DD.


UCLA Foundation, Los Angeles, CA

Grant Amount: $50,000.00Grant Date: September 2022

www.uclafoundation.org

The UCLA School of Dentistry Special Patient Care Clinic (SPC) will develop a new intervention serving adults with ASD and/or I/DD to improve care quality and reduce waitlists to provide more timely and effective dental care. With the Video Desensitization and Modeling for Adults with Autism Spectrum Disorders (ASDs), the clinic will develop, pilot, and disseminate a set of desensitization videos tailored specifically to adults with autism and/or I/DD, with the aim of enabling more individuals to be seen without sedation or anesthesia, and to provide community dental providers a tool to help keep patients from needing a referral. 


Vanderbilt University Medical Center, Nashville, TN

Grant Amount: $50,000Grant Date: September 2022

www.vumc.org/main/home

In 2013, the Vanderbilt Kennedy Center (VKC) received a grant from the WITH Foundation to use Canadian tools created by Surrey Place’s Developmental Disabilities Primary Care Program (DDPCP) and adapt them into an online resource, the IDD Toolkit, to enhance primary care for adults with intellectual and developmental disabilities in the U.S. VKC’s dissemination work included providing training on the tools in Tennessee and nationally to healthcare providers and individuals and families. In the past few years, the Canadian team has updated its consensus guidelines and many tools. With this new funding, the VKC team will work with the DDPCP again to adapt the tools and disseminate the updated toolkit.


Positive Exposure, New York, NY

Grant Amount: $125,000.00Grant Date: June 2022

www.positiveexposure.org/

Reshaping Perceptions of Adults Living with I/DD in the Medical Environment and Broader Public Arena is a collaboration with the AADMD, the Department of Psych & Human Behavior at Brown Medical School, Albert Einstein College of Medicine, and the NYC Mayor’s Office for People with Disabilities. Through this project, Positive Exposure will create three FRAME films (Faces Redefining the Art of Medical Education) addressing the need for comprehensive and accessible healthcare for adults with I/DD. The films will focus on Oral/Dental Healthcare, Mental Health Challenges, and Best Practices for Emergency Medical Response Teams. The project will also introduce an interactive, virtual platform utilizing their Ambassador program, PEARLS, and empower the I/DD community to become mentors to medical trainees, practitioners and EMR teams by sharing experiences, narratives and answering questions.


Institute for Exceptional Care, Washington, D.C.

Grant Amount: $50,000.00Grant Date: June 2022

www.ie-care.org/

ABC3: Action to Build Clinical Culture and Confidence is a collaborative initiative launched by IEC that includes I/DD self-advocates, caregivers, clinical professional societies, accreditors, groups that set clinical training standards, and groups that provide technical support to practicing clinicians. ABC3’s goal is to scale national policies, programs, and resources to improve the cultural and technical readiness of general clinicians to serve people with I/DD throughout the lifespan. This project will support ABC3’s 5-year strategic roadmap, and expansion of the collaborative to include organizations that represent all the stakeholder sectors critical to achieving goals set in the roadmap.


UMass Dartmouth Foundation, North Dartmouth, MA

Grant Amount: $35,000.00Grant Date: June 2022

https://giving.umassd.edu/about/foundation-board/

The rapid shift to telehealth care during the COVID-19 pandemic introduced a myriad of challenges and demonstrated a lack of evidence-based guidelines for successful and appropriate telehealth care for people with intellectual and/or developmental disabilities (I/DD). Using a modified Delphi consensus method, the Establishing Best Practices in Telehealth Care for People with Developmental Disabilities project will survey experts in telehealth for people with I/DD (physicians, nurses, self-advocates, family members, and supporters) to develop and disseminate a set of best practices and resources for successful, effective telehealth for people with I/DD.


Disability Voices United (DVU), Manhattan Beach, CA

Grant Amount: $52,450.00Grant Date: June 2022

disabilityvoicesunited.org

The #FreeBritney: A Public Awareness Partnership to Promote SDM and Reform Conservatorships project identifies and trains self-advocates to present on supported decision-making (SDM) and advocacy for conservatorship reform. The project is a partnership between DVU and Free Britney L.A. Through the project, self-advocates will lead an education program on SDM and alternatives to conservatorship for professionals in healthcare, education, regional centers, and government. Building on the momentum of the #FreeBritney movement, the project will also implement a public awareness campaign to advocate for changes to the conservatorship system and recognition of SDM. Finally, DVU will build an intersectional coalition of leaders and organizations who will come together to advocate for SDM and conservatorship reform.


University of Cincinnati Center for Excellence in Developmental Disabilities at Cincinnati Children’s Hospital Medical Center, Cincinatti, OH

Grant Amount: $50,000Grant Date: January 2022

www.ucucedd.org

The Dismantling the Double Burden of Racism and Ableism through Medical Recommendations for PCPs project will expand on the existing work of the Center for Dignity in Healthcare to reduce healthcare inequities by engaging disabled Black, Indigenous, and People of Color (BIPOC) stakeholders to co-develop medical recommendations that reflect anti-ableist and anti-racist practices and beliefs and to develop plans to disseminate these guidelines to a) maximize the likelihood of their adoption into use by PCPs in their treatment of BIPOC with disabilities and b) ensure self- advocacy resources reach and are used by BIPOC with I/DD. The emphasis of the project will be informing strategy to reduce healthcare inequities experienced by BIPOC with disabilities through a disability justice framework.


University of Illinois at Chicago, Chicago, IL

Grant Amount: $50,000Grant Date: January 2022

www.uic.edu

The Patient Instructor Training Program for BIPOC adults with IDD project will develop and administer trainings for six Black, Indigenous, and/or People of Color (BIPOC) with IDD to serve as patient instructors for medical and healthcare students across the state of Illinois. The project partners with the Chicagoland Disabled People of Color Coalition and Grupo SALTO. Through workshops co-led by BIPOC self-advocates, trainees will observe, learn, and practice strategies to effectively share their lived experiences with students in pre-service training to become primary care providers. Trained patient instructors will support student’s understanding of patient-centered care, shared clinical decision making, and culturally sensitive care for the IDD community.


University of Maryland Baltimore Foundation Inc. (UMB), Baltimore, MD

Grant Amount: $50,000Grant Date: January 2022

www.umaryland.edu/umbf/

The Patient Care Navigator for Oral Health Management of BIPOC patients with I/DD project aims to develop a pilot implementation of an oral health care navigator for BIPOC individuals with I/DD seeking dental care in Maryland. UMB will work with the Maryland Office of Minority Health and Health Disparities to collate dental provider information of community-based dentists who can treat individuals with I/DD. A BIPOC self- advocate will be hired and trained to serve as a patient navigator for other BIPOC individuals with I/DD to help patients find providers in the community who can provide dental care for members of this population.


Virginia Commonwealth University Foundation, Richmond, VA

Grant Amount: $50,000Grant Date: January 2022

www.vcuf.org

The Healing Narratives: Using Personal Stories to Improve Patient-Doctor Communication project will amplify the lived experiences of people with intellectual and developmental disabilities (IDD) identifying as Black, Indigenous, and People of Color (BIPOC) regarding communication with their doctors. In collaboration with three self-advocacy organizations, they will provide an avenue, through a photovoice research project, for BIPOC with IDD to advocate for change by sharing their stories about patient-doctor communication. Research findings will target the medical community and will be disseminated through virtual and in-person gallery walks in Washington D.C. as well as Richmond and Norfolk, Virginia.


University of the Pacific, Arthur A. Dugoni School of Dentistry, San Francisco, CA

Grant Amount: $50,000.00Grant Date: January 2022

www.dental.pacific.edu/dental

The Dugoni School will offer a two-day seminar – Providing Oral Health Care to BIPOC Adults with I/DD over one year featuring 25 BIPOC adults with I/DD as self-advocates. They will serve on panels, group discussions, and participate in patient simulations as part of a training program for over 430 Dugoni School faculty, students, residents, and staff. The purpose of the project is to offer educational resources, training, and mentorship to faculty, students, residents, and staff to improve oral health outcomes and increase their knowledge of disability justice, cultural competency, and cultural humility. 


The University of Texas Rio Grande Valley (UTRGV) Foundation, McAllen, Texas

Grant Amount: $50,000Grant Date: January 2022

utrgvfoundation.org

The UTRGV Knapp Medical Center (KMC) Internal Medicine program is a community-based graduate medical education program in Weslaco, Texas. 

The goal of the UTRGV project, The Internal Medicine Residents Involvement in Post-COVID Care of People Living with Disabilities, is to help residents improve their competency and general knowledge, awareness, and practice in caring for individuals with COVID. Through 40-resident participant dyads, the project will give residents the opportunity to care for patients with disabilities and treat the complex effects of long-haul COVID in people with disabilities.


University of New Hampshire Institute on Disability/UCED, Durham, NH

Grant Amount: $50,000Grant Date: September 2021

www.iod.unh.edu

People with intellectual and developmental disabilities (IDD) experience barriers to accessing healthcare, which can result in worse health outcomes than people without disabilities. During the COVID-19 pandemic, fewer in-person office visits were available, and the change to telehealth care posed new challenges for people with IDD. Telehealth and Individuals with IDD: Challenges and Best-Practices in the COVID Era is a partnership of the Institute on Disability, the New Hampshire Self-Advocacy Leadership Team, and a trained medical librarian. The project will explore barriers to care, identify best practices for providing telehealth to individuals with IDD, and share findings with primary care providers to inform their practices.


UCF ECHO Adult Augmentative and Alternative Communication, Orlando, FL

Grant Amount: $35,000Grant Date: September 2021

www.healthprofessions.ucf.edu/cdclinic/

The UCF ECHO: AAC for Adults project will improve the competency of speech-language pathologists in providing augmentative and alternative communication (AAC) assessments and intervention for adults with developmental disabilities. By capitalizing on the tested hub-and-spoke approach of the ECHO model, cohorts of providers will receive, free of charge, evidence-based strategies from subject matter experts in the field of AAC. The project will utilize distance technologies to reach professionals and reduce barriers to knowledge, increasing the capacity for AAC services throughout the region.


UC Regents, San Francisco, CA

Grant Amount: $50,000Grant Date: September 2021

www.ucsf.edu

The Campaign for Exceptional Smiles project aims to improve the oral health of people with Developmental Disabilities (DD) in the San Francisco Bay Area through dental workforce development, increased availability of dental services in dental offices and within community settings, and reduction in the dependence of people with DD on sedation and/or general anesthesia for dental care. The goal of the project is to educate and empower the dental community (predoctoral dental students, postgraduate residents, dentists, dental hygienists, and RDHAPs) by conducting  sessions led by multidisciplinary professionals, experts, and self-advocates to promote a patient-centered  approach and enhance optimal oral healthcare for the SF developmental disability community. 


Sepsis Alliance, San Diego, CA

Grant Amount: $45,000Grant Date: September 2021

www.sepsis.org

Intellectually disabled (ID) adults are at elevated risk for sepsis, the body’s overwhelming and life-threatening response to any infection, including viral infections like COVID-19. However, ID adults receive scant attention in sepsis studies and are not a focus in healthcare provider training on sepsis, despite difficulties that arise in diagnosis and treatment, and the heightened vulnerability of this population. The Sepsis Risk, Treatment, and Care Delivery: Special Considerations for Intellectually Disabled Adults project will implement a nationwide training program and provide educational materials for healthcare providers on sepsis risk and treatment considerations in the ID adult population, including case studies, with a special focus on navigating communication with ID patients.


Center for START Services, Concord, NH

Grant Amount: $50,000Grant Date: September 2021

www.centerforstartservices.org

Gaps in evidence-based training lead to poor patient care and satisfaction, lack of patient engagement, and polypharmacy. The recently developed Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities, an integrated health guide (funded by the WITH Foundation), focuses on caring for persons with Intellectual and Developmental Disabilities (IDD) and provides the foundation for a companion training curriculum for medical students and residents to improve outcomes. This study aims to develop and evaluate an evidence-informed, easy to use training for medical students and residents on the mental healthcare for persons with IDD.


The American Academy of Developmental Medicine & Dentistry (AADMD), Warwick, NY

Grant Amount: $25,000Grant Date: September 2021

www.aadmd.org

AADMD has a keen understanding of the challenges that COVID-19 caused for people with DD/IDD. They responded by developing targeted education, advocacy and resource development geared to this patient population. AADMD launched an online Coronavirus Center (aadmd.org/coronavirus) on March 27, 2020 to provide a place to share resources, knowledge and advocacy efforts during the pandemic, including a three-part “COVID-19 & People with IDD” webinar series. The series featured Dr. Geoffrey A. Weinberg, a Professor at the University of Rochester specializing in infectious diseases as well as Dr. Seth Keller who discussed healthcare concerns of people with IDD and Dementia. The third webinar in the series will feature Dustin Plunkett, self-advocate and Special Olympics Manager of Outreach, and Dr. Alicia Bazzano, Chief Health Officer of Special Olympics International, to discuss their pandemic response and their work with the Centers for Disease Control and Prevention.

AADMD also launched advocacy efforts to ensure people with IDD are not discriminated during the pandemic including two petitions:

  • The Ventilator Rights petition asks hospitals to not use the presence of an intellectual or developmental disability as exclusion criterion for ventilator support. Nearly 1,000 people have signed this petition and 11 organizations have joined the effort as official signatories.
  • The Visitation Rights petition asks hospitals to allow caregivers to accompany patients with IDD for in hospital support. Over 20,000 people have signed this petition and 23 organizations have joined as official signatories.

 


Oregon Health and Science University Foundation, Portland, OR

Grant Amount: $25,000Grant Date: September 2021

www.ohsu.edu/foundation

Adults with I/DD who rely on augmentative and alternative communication (AAC) need to be prepared to participate in telehealth appointments, especially if they have concerns about COVID-19 symptoms. The Oregon Health & Science University UCEDD, in collaboration with the Assistive Technology Lab (AT Lab) at Community Vision, created four animated videos called Telehealth-and-You that are available in Spanish and English, both with closed captioning. They are accompanied by written transcripts for individuals who use screen readers or need more time to process words, as well as by Tar Heel Readers- electronic books with the same pictures and text for emerging readers. They are written for people with I/DD who rely on AAC and address four areas:

  1. What is Telehealth? 
  2. How to Schedule an Appointment. 
  3. How to Prepare for an Appointment. 
  4. How to Participate in an Appointment.

Each video is between two and six minutes long and uses plain language and was produced with additional potential end-users in mind, including those with limited health literacy skills, individuals who are non-English speakers, and other citizens who require information about telehealth visits. A focus group of individuals with I/DD who rely on AAC guided every step of this project. The group relied on virtual meetings and emails to decide on the topics for the videos, to help form the scripts, to select images for animation, and to review finished products. 

The four videos have been disseminated to thirty four organizations, government offices, advocacy groups, and conferences. Eighteen local and regional partners, such as the Oregon Council on Developmental Disabilities, the Oregon Self Advocacy Coalition and MODA Insurance, ten  national partners such as Assistive Technology Facebook groups, the United States Society for Augmentative and Alternative Communication (USSAAC), and the Association for University Centers on Disabilities (AUCD), as well as five  international partners such as Patient-Provider Communication Coalition and Communication Disabilities Access Canada, have received information.

The Vice President for Telehealth Services at the Oregon Health & Sciences University is currently advocating through outpatient services to send these videos to every patient at OHSU who is scheduled for a virtual visit. OHSU has contacted over 30,000 virtual visits since the COVID-19 pandemic began. The Telehealth and You videos (English and Spanish versions), transcripts (for screen readers), Tar Heel reader books (for individuals who need additional processing time beyond video presentations, and for emerging readers) can be found at: www.ohsu.edu/university-center-excellence-development-disability/telehealth-and-you.


Kaiser Permanente Northern California Division of Research, Oakland, CA

Grant Amount: $25,000Grant Date: September 2021

divisionofresearch.kaiserpermanente.org/home

The COVID-19 pandemic has led to dramatic changes in usual daily routines and the way healthcare is delivered to patients at Kaiser Permanente Northern California (KPNC). Nearly all non-urgent health care encounters have been transitioned to virtual telemedicine (video, telephone) visits. 

Adults with intellectual or developmental disabilities are a particularly vulnerable population and may be especially impacted by these changing times. Many autistic adults have co-occurring psychiatric and physical health conditions that require consistent access to health care services and therapies. Thus, the present disruption to healthcare and general uncertainty of the pandemic may put this population at higher risk of health complications and unmet healthcare needs.

Kaiser Permanente’s Northern California Division of Research is in the midst of conducting a study to determine whether KPNC’s shift to telemedicine is meeting the healthcare needs of the large and growing population of autistic adults. Specific aims of the project are to:

  • Characterize the impact of the COVID-19 pandemic on measures of healthcare utilization and health status, particularly with respect to mental health and management of co-occurring chronic conditions among adults with autism spectrum disorders (ASD).   
  • Examine changes in utilization (pre-pandemic vs. during pandemic) by sociodemographic factors (sex, race/ethnicity, age) and health status (medical and psychiatric diagnoses). 

The goal of this study is to determine whether KPNC’s shift to telemedicine is meeting the healthcare needs of our large and growing population of autistic adults. The findings will lay the groundwork for follow-up studies to identify barriers to telemedicine access and enhance and tailor telemedicine delivery to the needs of adults with ASD and other developmental disabilities. 


Disability Voices United, Manhattan Beach, CA

Grant Amount: $25,000Grant Date: September 2021

disabilityvoicesunited.org

Disability Voices United used COVID-19 Response funds to provide people with disabilities, their families, and supporters with critical information on the COVID-19 pandemic. Projects included:

  • The development of a comprehensive bilingual coronavirus website and twenty COVID Response Webinars on a range of subjects such as emergency preparedness, mental health, special education, and the impact on communities of color. The series can be found on the Disability Voices United YouTube channel and on the Disability Voices United Coronavirus website, which has been continuously updated throughout the pandemic with bilingual resources for people with developmental disabilities and their families.
  • The creation of a Tip Sheet for providers to support patients with IDD along with communication charts to ensure that patients with intellectual and developmental disabilities are respected and provided supported decision making and communication supports. The Tip Sheet has been distributed through COVID and SDM Town Halls, to the Disability Voices United email distribution list and can be found on the Disability Voices United website.
  • The development and distribution of a survey of self-advocates and families that found that many were not receiving desperately needed supports. The survey received media coverage and led to changes at the state level. 
  • The promotion of early access to the COVID-19 vaccine for people with disabilities.

To learn more about these efforts, visit:  disabilityvoicesunited.org/cv/webinars-by-disability-voices-united/


Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $25,000Grant Date: September 2021

autisticadvocacy.org

The Autistic Self Advocacy Network used COVID-19 grant funding to launch many advocacy and education efforts. Those efforts include:

  • Plain language materials co-created with Green Mountain Self Advocates of Vermont explaining COVID-19 and discussing the implications for people with disabilities.
  • Authoring a section to GMSA’s toolkit: a Know Your Rights guide explaining how people with IDD have a right to bring a supporter to the hospital even during COVID restrictions.
  • Drafting a script for an animated video explaining COVID-19 in accessible language, and worked in partnership with Rooted in Rights to release the video.
  • Creating and maintaining a COVID-19 Case Tracker which combines information from state and local governments with news media reports to get the most complete picture possible. 
  • Advocacy efforts on state triage plans and hospital visitor policies. ASAN worked with other disability organizations to file challenges with the HHS Office of Civil Rights against states whose COVID-19 response plans could lead to discrimination against people with disabilities, including Tennessee, Utah, North Carolina, Oregon, Arizona, and Texas. 
  • Educating the public about COVID’s impact on people with disabilities by speaking to journalists about topics including COVID-19 in congregate settings; the effect of COVID on home- and community-based services; how some states have codified discrimination in their plans for medical rationing if hospitals become overwhelmed; the importance of equitable vaccine distribution, and more.
  • Creating Spanish-language translations of their plain-language COVID materials released earlier this year. 

Learn about this resource and more on ASAN’s COVID-19 resources page: autisticadvocacy.org/resources/


Coalition for Compassionate Care of California, Sacramento, CA

Grant Amount: $43,000Grant Date: June 2021

www.coalitionccc.org

The Coalition for Compassionate Care of California (CCCC) will partner with regional center staff and advocates to develop and pilot test advance care planning (ACP) tools, training, and resources for regional center staff to utilize with clients as a regular part of the IPP Individual Program Plan process. Using CCCC’s “Thinking Ahead: My Way, My Choice, My Life at the End” (Thinking Ahead) workbook as a foundation, the resources and training will be designed to empower adults with developmental disabilities to explore, express and record their wishes regarding medical treatments during serious illness and at end of life.


St. John Fisher College, Rochester, NY

Grant Amount: $157,942Grant Date: June 2021

www.sjfc.edu

Rush University, in partnership with St. John Fisher College, University of Illinois at Chicago, Villanova University, and University of Minnesota received an ACL grant to launch a national consortium, PATH-PWIDD, to develop an inter-professional (medicine, nursing and other healthcare professionals) curricula to improve the capacity of the workforce to address the health and healthcare needs of persons with ID/DD. This four-year grant from WITH Foundation will amplify the PATH-PWIDD’s outcomes by supporting the effective dissemination of the work of the consortium.


The National Disability Rights Network (NDRN), Washington, DC

Grant Amount: $50,000Grant Date: June 2021

www.ndrn.org

The National Disability Rights Network (NDRN) seeks to enhance equitable access to healthcare and vaccine distribution during the COVID-19 pandemic for Black, Indigenous & people of color with developmental disabilities. In partnership with Foundations For Divergent Minds and the John Hopkins Disability Health Research Center, the project will review current research, case studies, and first-person accounts related to inequitable COVID-19 healthcare policies, hospital procedures, and statewide vaccine distribution processes. The project will also conduct interactive workshops designed to decode discriminatory language around disability and race within COVID-19 healthcare policies, hospital procedures, and the rollout of statewide vaccination processes and develop a video series that features 4 or 5 COVID-19 related experiences from self-advocates of color with the expressed intention of deepening developmental disability competency among healthcare practitioners.  


The National Alliance to Advance Adolescent Health (NAAAH), Washington, DC

Grant Amount: $50,000Grant Date: January 2021

www.thenationalalliance.org

The National Alliance to Advance Adolescent Health (NAAAH) will develop educational materials for Primary Care providers (PCPs) that will strengthen their capacity to better serve young adults, ages 18-30, with intellectual and developmental disabilities (IDD), who live at home during pandemic or emergency situations. NAAAH will conduct key informant interviews with young adults with IDD, disability advocacy organizations and federal and national health organizational professionals to elicit suggested topics for education and counseling and key resources such as assessment tools, emergency care plans and telehealth guidance. A 14-member advisory panel will produce a tip sheet with corresponding resources for dissemination.


AHRC NYC Foundation, New York City

Grant Amount: $50,000Grant Date: January 2021

www.ahrcnyc.org

AHRC NYC, the largest nonprofit in NY State serving individuals with I/DD and the Jacobi Medical Center will partner on developing a interdisciplinary approach to train dental residents, nurses and direct service professionals to assess oral health needs, support remote patient monitoring using intraoral cameras and visual and manual palpation, and provide/promote daily oral care to prevent new disease and mitigate the morbidity associated with existing disease. This project aims to set the stage for the implementation of a future oral health care system, resulting in more efficient oral care, and ultimately, improved health outcomes both during health emergencies and beyond.


Georgia State University Research Foundation, Atlanta, GA

Grant Amount: $50,000Grant Date: January 2021

research.gsu.edu/georgia-state-university-research-foundation/

The Center for Leadership in Disability (CLD), in partnership with Adult Disability Medical Healthcare, Inc. (ADMH), will develop and implement a series of web-based trainings for primary care providers (PCPs) using the established ECHO® model of training delivery. The modules will educate PCPs on best practices for providing accessible, responsive, and culturally competent care to individuals with intellectual and developmental disabilities (IDD) during pandemics and similar emergencies. Individuals with IDD and family members will serve as experts alongside healthcare professionals in the development and delivery of the modules.


The Arc of Massachusetts, Waltham, MA

Grant Amount: $75,000Grant Date: January 2021

www.thearcofmass.org

The Arc of Massachusetts will formally partner with The Arc of the United States and The Arc of Oregon to develop a web-based, culturally competent training and toolkit for emergency medical personnel. The goal is to support equal access to emergency healthcare for people with intellectual and developmental disabilities (I/DD),  especially those with other marginalized identities, by educating healthcare providers working in hospital emergency departments.


Community Catalyst, Boston, MA

Grant Amount: $50,000Grant Date: September 2020

www.communitycatalyst.org

The Center for Consumer Engagement in Health Innovation at Community Catalyst, will produce two videos for their series Re-envisioning Care for People with Disabilities. Targeted at clinicians and health system leaders, the series introduces a person-centered model of care built on the values of independent living. The videos will focus on the needs of people with IDD. The project will partner with the Association of University Centers on Disabilities (AUCD). The videos will focus on empowering people to make health care decisions based on their priorities and will address health needs during COVID-19 as well as other topics. Video content will be developed with input from people with IDD, advocates, researchers and experienced clinicians.


Arc of the United States, Washington, DC

Grant Amount: $99,000Grant Date: September 2020

www.thearc.org

Building on previous work funded by WITH, The Arc of the United States and the Board Resource Center will expand the impact and mission of the Talk About Sexual Violence project during this 3-year grant by applying a supported-decision making lens to previous and new project materials so health care professionals can have open, plain-language conversations with patients with intellectual and developmental disabilities (IDD) when addressing sexual violence. The ultimate goal is to work within the healthcare system to create replicable tools and sustainable strategies to address sexual violence in the state of California and nationwide.


National Center for Children in Poverty, Bank Street College of Education, New York, NY

Grant Amount: $47,500Grant Date: September 2020

www.nccp.org

The project, Improving Oral Health and Oral Health Care for Adults with Developmental Disabilities in New Jersey will identify and overcome barriers to high quality healthcare access by addressing inadequate Medicaid coverage and improving care coordination. The National Center for Children in Poverty will implement key elements of the statewide Oral Health Plan, developed for the New Jersey Council on Developmental Disabilities , that aims to improve oral health/health care for adults with DD in New Jersey. The high-impact elements of the plan include improving NJ’s Medicaid Managed Care Organizations’ coverage of oral health care and care management and improving the transition from pediatric to general dentistry.


University of Alaska Center for Human Development, Anchorage, AK

Grant Amount: $50,000Grant Date: September 2020

www.uaa.alaska.edu/academics/college-of-health/departments/center-for-human-development/

The project Partners in Health (PIH) will improve healthcare for people with intellectual and developmental disabilities (IDD) by providing inclusive, in-person, or online PIH training for healthcare providers, self-advocates, and family members/caregivers. Self-advocate will co-facilitate trainings for providers aimed to increase understanding of patients with IDD, increase best practice communication strategies and include supported decision making in the patient/provider relationship. Self-advocate/family trainings will also aim to increase participation in their healthcare appointments and self-advocacy. The project will build Inclusive bridges between providers and empowered self-advocates and their families.


Autistic Self Advocacy Network, Washington, DC

Grant Amount: $202,500Grant Date: June 2020

https://autisticadvocacy.org

This 3-year grant will assist ASAN’s nationally regarded Disability Policy Center to continue and expand their work of providing robust, strategic advocacy at the state and national level on a number of fronts, including supported decision making, access to healthcare and other health policy topics. The funding will be used to educate self-advocates and policymakers alike on issues relating to healthcare and people with developmental disabilities.


Cornell Center for Research on End-of-Life Care, New York, NY

Grant Amount: $36,000Grant Date: June 2020

www.endoflife.weill.cornell.edu

At the end of life, the perspectives of individuals with intellectual and developmental disabilities (IDD) often go unheard or ignored, and inappropriate or inadequate care may be delivered. The project, Reducing End-of-Life Health Disparities Among Individuals with Intellectual/Developmental Disability will use data from the New York Presbyterian hospital system to identify potential disparities in care. The information will be used to develop educational interventions for clinicians that includes the perspectives and expertise of self-advocates. These educational interventions aim to reduce these disparities and improve end-of-life care for patients with IDD.


Positive Exposure, New York, NY

Grant Amount: $105,000Grant Date: June 2020

www.positiveexposure.org

Positive Exposure and its film program, FRAME (Faces Redefining the Art of Medical Education) serve as a major visual arts medium. They present the humanity and dignity of individuals living with genetic, physical, behavioral and intellectual differences. Positive Exposure will collaborate with the American Academy of Developmental Medicine & Dentistry (AADMD), the Child Neurology Foundation (CNF) and the National Task Group on Intellectual Disability & Dementia Practices (NTG) to create three films: Epilepsy in Adults with IDD; Early Onset Alzheimer’s disease in individuals with Down syndrome, and the Supported Decision Making (SDM) process. SDM will also be included in the first two films.


Special Olympics, Washington, DC

Grant Amount: $48,000Grant Date: June 2020

www.specialolympics.org

Utilizing existing evidence-based resources, this project, The Right to Healthy Relationships will develop, in collaboration with self-advocates, a healthy relationship training. A complementary training for caregivers and coaches will also be developed. 


American Academy of Developmental Medicine & Dentistry (AADMD), Prospect, KY

Grant Amount: $ 25,000Grant Date: May 2020

www.aadmd.org

In response to COVID-19, AADMD saw the need for targeted education, advocacy, and resources tailored for patients with IDD. They launched an online Coronavirus Center (aadmd.org/coronavirus) on their website to provide a place to share resources, knowledge, and rally advocates to protect the rights of people with IDD during the pandemic. Since the Coronavirus Center launch, AADMD has had 9,058 unique visitors, 17,659 pageviews and close to 50,000 people sign their online petitions. From this platform, AADMD consolidates all of its COVID-19 related materials and efforts, including their popular webinar series “COVID-19 & People with IDD” which has drawn nearly 1,700 attendees, in total. Funding from WITH will allow AADMD to further develop these resources and will reach more healthcare professionals treating patients with IDD.

 


Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $25,000Grant Date: May 2020

www.autisticadvocacy.org

ASAN, in partnership with a number of other disability rights organizations, is working hard to elevate the needs of people with disabilities in the U.S. response to COVID-19. ASAN has partnered with other self-advocacy organizations to ensure that information about the pandemic, staying safe, and people’s rights are accessible to as many people with IDD as possible. Grant funding from the WITH Foundation will allow ASAN to sustain that work, support other self-advocacy organizations, reach more of their community, and respond not only to the current crisis, but to the underlying structural factors and systemic failures which have placed the disability community in danger. Specific projects include:

  • Plain language materials co-created with Green Mountain Self Advocates of Vermont explaining COVID-19 and discussing the implications for people with disabilities. Spanish language version to come.
  • The creation, in partnership with Rooted in Rights, of an animated video in plain language explaining COVID-19 and social distancing. Spanish language version to come.
  • Working to restore service disruptions that directly impact individual’s rights to care, self-determination, independent living and community integration.
  • Tracking and documenting infections and deaths of people with disabilities in congregate settings due to COVID-19 via an online tool available to the public. 

 


Disability Voices United, Manhattan Beach, CA

Grant Amount: $25,000Grant Date: May 2020

www.disabilityvoicesunited.org

Disability Voices United has been in the forefront of the intellectual and developmental disability community response to the COVID-19 pandemic. By the end of the first week of March, DVU pivoted its work and began developing a comprehensive resources website for people with I/DD and their families. The website, www.disabilityvoicesunited.org/cv, which has also been translated into Spanish, continues to be updated almost daily with the latest information and has been viewed thousands of times. Within a week of launching the website, DVU hosted its first webinar on the rights to regional center services during the COVID crisis. Over the following weeks, DVU hosted nine more webinars on the subjects of emergency preparedness, mental health, special education, the impact of COVID-19 on disability communities of color, and the rights to healthcare, housing, and communication supports. DVU plans to host one webinar a week for the foreseeable future.The webinars are all simultaneously interpreted into Spanish. 

Webinars featured self-advocates and family members, including Tim Jin, Stephen Hinkle, Hector Ramirez, and Leroy Moore, Dr. Clarissa Kripke (UCSF’s Office of Developmental Primary Care), Dr. Alicia Bazzano (Special Olympics), and Tauna Szymanski (Communication First). In addition, DVU has worked with other organizations to advocate for the rights of people with I/DD through this crisis. Grant funding from WITH will allow DVU to continue and expand their activities while maintaining their commitment to reach out to underserved communities.

 


Kaiser Permanente Northern California Division of Research, Oakland, CA

Grant Amount: $25,000Grant Date: May 2020

divisionofresearch.kaiserpermanente.org

The COVID-19 pandemic has led to dramatic changes in usual daily routines and the way health care is delivered to patients in the United States, including California, which has been under a statewide shelter-in-place order since mid-March. At Kaiser Permanente Northern California (KPNC), a large, integrated health care delivery system, nearly all non-urgent health care encounters have been transitioned to virtual telemedicine (video, telephone) visits. 

Public health experts and community leaders anticipate that social distancing and changes to daily life will persist into 2022, indicating that the growth of telemedicine will accelerate and redefine the future of health care delivery. However, at present very little is known about how these changes are impacting the health care utilization and health status of KPNC’s 4.4 million members. Adults with intellectual or developmental disabilities are a particularly vulnerable population and may be especially impacted by these changing times. Many autistic adults have co-occurring psychiatric and physical health conditions that require consistent access to health care services and therapies. Thus, the present disruption to healthcare and general uncertainty of the pandemic may put this population at higher risk of health complications and unmet healthcare needs.

DOR will conduct a study to determine whether KPNC’s shift to telemedicine is meeting the health care needs of the large and growing population of autistic adults. These findings will lay the groundwork for follow-up studies to identify barriers to telemedicine access and enhance and tailor telemedicine delivery to the needs of adults with ASD and other developmental disabilities. Future work could include interviews with autistic adults about their telemedicine experiences, longer follow-up on the impact of the pandemic on the health status of autistic adults, and comparisons with COVID-related health care changes in adults with other special health care needs. Critically, these findings will support early identification of unmet health care needs and trigger development of strategies to improve telemedicine for this population.

 


Oregon Health and Science University Foundation, Portland, OR

Grant Amount: $25,000Grant Date: May 2020

ohsu.edu

Adults with I/DD who rely on AAC need to be prepared to participate in telehealth appointments, especially if they have concerns about COVID-19 symptoms. The Oregon Health & Science University UCEDD, in collaboration with the Assistive Technology Lab (AT Lab) at Community Vision, a Portland OR disability nonprofit organization, will produce products that address communication and telehealth needs during the COVID crises for adults with I/DD who rely on AAC. During this crisis, many adults with I/DD who are managing chronic health conditions with little access to their healthcare providers and have the opportunity to receive medical treatment through this virtual medium. But most of the existing resources are written for health care professionals or contain language (including text) that may not match the literacy and cognitive skills of the person with I/DD. This project will prepare these individuals to enter an appointment with access to their own words on communication boards with symbols or with speech generating devices. In addition, OHSU will continue to collaborate with other stakeholders who are teaching the general public about telehealth requirements for virtual visits to provide cognitively accessible materials for those with I/DD who rely on AAC, their families and direct support workers.

 


University of Kentucky’s Human Development Institute, Lexington, KY

Grant Amount: $90,800Grant Date: January 2020

https://hdi.uky.edu/about-hdi

The My choice Kentucky: Making Decisions in Dental Care project will create materials to enhance the dental care of people with intellectual and developmental disabilities (IDD) who use Augmentative and Alternative Communication (AAC). These materials will include videos and symbol sets that will improve communication and understanding for all parties- AAC users, their supporters, and dental professionals. Additionally, the materials will facilitate the use of SDM in dental care. This project will also forge a new partnership between the UK Human Development (HDI) and the UK College of Dentistry.

 


Communication First, Washington, DC

Grant Amount: $100,000Grant Date: January 2020

communicationfirst.org

The Assuring Better Communication for Deciding Together Initiative (ABCD) project will convene a national panel of thought leaders with personal and professional experience in augmentative and alternative communication (AAC), cultural competence, shared healthcare decision-making and supported decision-making for persons with IDD to develop a clear vision and recommendations. Engaging Temple University’s ACES program as a proving ground for ideas and recommendations, the initiative will develop and disseminate resulting tools, including an advocacy video toolkit, a whitepaper on rights, policy, and best practices, and tips for effectively communicating and making informed decisions in healthcare settings.


Oregon Health and Science University Foundation, Portland, OR

Grant Amount: $100,000Grant Date: January 2020

ohsu.edu

The Speak My Language! Using visual symbols for supported decision making by people who use AAC project is a partnership with the UCEDD at Oregon Health & Science University (OHSU) and the Community Vision – Assistive Technology Lab. The project will work to develop educational tools, symbol-based Patient Decision Aids for Supported Decision Making (PDAs for SDM) for adults with I/DD who use AAC with limited literacy skills. The partnership will conduct focus groups with AAC users about symbol and literacy needs for informed consent and health topics, develop symbol-based PDAs for SDM, evaluate their use in a hospital clinic and a community-based clinic that serves AAC users and widely disseminate the products through a web-based resource hub and provider trainings.


Wiki Education, San Francisco, CA

Grant Amount: $40,000.00Grant Date: September 2020

https://wikiedu.org/strategy/

Wiki Education will be provided funding to improve health and disability-related articles on Wikipedia.The Wiki Scientists professional development courses train experts to update and improve important topics on Wikipedia, ensuring that the world’s largest free information resource is as equitable and accurate as possible. With a grant from the WITH Foundation, Wiki will support 20 experts as they systematically improve 40 high-value Wikipedia articles about disability and healthcare.


University of New Hampshire Institute on Disability, Center for START Services, Concord, NH

Grant Amount: $50,000.00Grant Date: September 2020

centerforstartservices.org

People with (IDD) and co-occurring mental health (MH) needs experience gaps in effective healthcare services more often than the general population. With this project, Best Practice Prescribing Guidelines in MH/IDD aimed toward holistic, multi-disciplinary, integrated care approaches will address several issues that lead to mental healthcare disparities, including overuse of polypharmacy that undermines primary health. Treatment recipients and families will be integral partners to develop effective guidelines and assure prescribers are aware of and understand the impact that medical and psychosocial factors have on well-being and overall quality of life.


Quality Trust for Individuals with Disabilities, Washington, DC

Grant Amount: $100,000.00Grant Date: September 2020

dcqualitytrust.org

The Jenny Hatch Justice Project is a two-year Health Decision-Making Initiative designed to improve the access for DC and Maryland residents with (DD) to health care services. This will be accomplished through a combination of individual casework, legal advocacy to adults with DD who need assistance in developing and enforcing legal tools for health care decision-making, and statutory Supported Decision-Making Agreements for community education.  The initiative will provide training to people with DD, their families, and health care professionals to increase their awareness of the full continuum of health care decision-making supports under new and existing laws.


University of Kansas Center for Research, Inc., Lawrence, KS

Grant Amount: $50,000.00 Grant Date: September 2020

http://research.ku.edu/kansas_center_for_research

The Kansas University Center on Developmental Disabilities (KUCDD), in partnership with the Self- Advocate Coalition of Kansas (SACK), will create a planning process to promote the use of Supported Decision Making (SDM) in healthcare decisions. KUCDD created the Supported Decision Making Inventory (SDMI) to gather information needed to engage in systematic planning for supports for decision making. While the Inventory is helpful, a process needs to be developed for people with I/DD to use the SDMI. The funding from WITH will help them create a process that will combine real-world expertise from self-advocates with the SDMI, which will aid self advocates and families in planning for health-care decisions


Alzheimer’s Association – Greater Michigan Chapter, Southfield, MI

Grant Amount: $80,000.00Grant Date: September 2020

alz.org/gmc

The Alzheimer’s Association – Greater Michigan Chapter (GMC) will pivot on its successful Developmental Disabilities Supportive Services Program to provide Registered Nurses (RNs) and Licensed Practical Nurses (LPNs) with education regarding dementia and its impact upon people with developmental disabilities. The GMC will market these continuing nurse education (CNE) classes to Michigan nurses who currently or will likely serve people with both developmental disabilities and dementia. Funding from the WITH Foundation will enable the GMC to make 500 contacts with nurses between October 2019 and September of 2021.


Association of University Centers on Disabilities (AUCD), Silver Spring, MD

Grant Amount: $40,000Grant Date: May 2019

aucd.org

The Turn Up the HEAT (Health is for Everyone Action Team) project builds on successful efforts led by the AUCD to include Developmental Disabilities in medical education. The project will implement Developmental Disability (DD) competency in medical education by leveraging AUCD’s network to build capacity and develop leadership within medical schools in a three-state pilot (West Virginia, Kentucky, and Alabama).


Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $75,000Grant Date: May 2019

autisticadvocacy.org

This grant will assist ASAN, a nationally-regarded Disability Policy Center, to continue and expand their work of providing robust, strategic advocacy at the state and national level on a number of fronts, including supported decision making, access to healthcare and other health policy topics. The funding will be used to educate self-advocates and policymakers alike on issues relating to healthcare and people with developmental disabilities, ensuring that self-advocates have a voice in the national conversation on healthcare.


National Alliance to Advance Adolescent Health, Washington, DC

Grant Amount: $150,000Grant Date: May 2019

thenationalalliance.org

The National Alliance to Advance Adolescent Health will partner with the HSC Health Care System to implement the first-of-its-kind transition value-based payment model for young adults with IDD. This 3-year project aims to 1) incentivize child and adult practices to establish evidence-based transition supports for low-income young adults with IDD, and 2) achieve improvements in the transitional care process and young adult retention in care, satisfaction, and appropriate use of healthcare.


Disability Voices United, Manhattan Beach, CA

Grant Amount: $37,000Grant Date: May 2019

disabilityvoicesunited.org

The Parent-to-Parent Supported Decision-Making Message and Training Development project will conduct six focus groups of parents of teenagers with (I/DD) in California to test salient messages and materials to encourage supported-decision making (SDM) in healthcare settings and beyond. The focus groups will inform the development of training materials and presentations led by peer parents. The project will also focus on Spanish-speaking parents. Materials, train-the-trainer seminars, and an online training will be offered to parent-led organizations who have the trust of their communities and can leverage the project to a greater numbers of parents


Drexel University, Philadelphia, PA

Grant Amount: $40,000Grant Date: May 2019

drexel.edu

The Algorithms of Nursing Care for Hospitalized Adults with Autism Spectrum Disorder project will improve care by training nurses to integrate knowledge of ASD with care planning and delivery. The team includes self-advocates who will collaborate with researchers to develop the tools to improve the efficiency of acute care services for adults with ASD. The tools will be transferable to any healthcare setting.


Hope Community Resources, Anchorage, AK

Grant Amount: 50,000Grant Date: May 2019

hopealaska.org

Alaska is one of the state’s to pass a supported decision-making law. The Supported Health Care Decision Making Pilot project will support a staff member who will engage with the health supports team.  In conjunction with community healthcare officials, this staff member will implement a community awareness program and develop individualized supported medical decision-making agreements for Alaskan adults experiencing intellectual or other disabilities


University of Louisville Research Foundation, Louisville, KY

Grant Amount: $50,000Grant Date: January 2019

louisville.edu/research/spa

This project aims to improve physician competency through education and training by engaging medical students, residents, and practicing physicians. Clinicians will partner with adults with intellectual/developmental disabilities (IDD) to enhance their role as self-advocates with teaching skills, and train physician faculty to be facilitators of teaching methodologies that partner with self-advocates. Dyads of trained self-advocates and facilitators will engage in activities with medical students in a variety of efforts including: the Culturally Effective Care Symposium, Interdisciplinary Clinical Cases, Patient Simulation Sessions, and Health Disparities Curriculum. This project partners with Special Olympics Kentucky (SOKY) and Down Syndrome Louisville (DSL).


Baylor College of Medicine, Houston, TX

Grant Amount: $50,000Grant Date: January 2019

bcm.edu

This project is an interdisciplinary collaboration seeking improved access to dental care for adults with intellectual/developmental disabilities (I/DD). Its primary objectives include: 1) Implementing a clinic integrating medical, dental, and behavioral health providers within an existing primary care setting; 2) Developing a curriculum for health care providers and trainees to increase comfort and confidence caring for individuals with I/DD and their dental needs and 3) Training health care providers to utilize desensitization strategies to increase access to dental care, improve the patient experience, and decrease the need for sedation services in order to receive dental care.  This project partners with UTHealth School of Dentistry (UTSD) and the United HealthCare Community Plan of Texas (UHC).


University of Rochester – Eastman Institute for Oral Health, Rochester, NY

Grant Amount: $50,000Grant Date: January 2019

urmc.rochester.edu/dentistry.aspx

The aim of this project is to establish a sustainable and reproducible curriculum in training healthcare providers (residents, fellows and healthcare providers in practice) to 1) understand the healthcare disparities, 2) acquire the skill set needed to provide high-quality healthcare and appropriately deliver care and 3) establish a multidisciplinary healthcare network to ensure the continuity of care for people with IDD. Modules will be interactive and co-led by self-advocates with IDD. This project partners with Monroe Community College and Special Olympics International (SOI).


National Council on Independent Living, Washington, DC

Grant Amount: $40,000Grant Date: September 2018

ncil.org

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


The Arc of the United States, Washington, DC

Grant Amount: $54,000Grant Date: September 2018

thearc.org

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 healthcare 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, Culver City, CA

Grant Amount: $40,000Grant Date: September 2018

achievable.org

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, Mendenhall, PA

Grant Amount: $24,000Grant Date: September 2018

genetic.org

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.


Disability Rights Education and Defense Fund (DREDF), Berkeley, CA

Grant Amount: $50,000Grant Date: September 2018

dredf.org

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.


Center for Public Representation, Northampton, MA

Grant Amount: $50,000Grant Date: September 2018

centerforpublicrep.org

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.


Arthur A. Dugoni School of Dentistry, San Francisco, CA

Grant Amount: $120,000Grant Date: May 2018

dental.pacific.edu/dental-services/clinics-and-services/special-care-and-hospital-dentistry

The Special Care Clinic and Hospital Dentistry Program at the University of the Pacific’s Arthur A. Dugoni School of Dentistry was awarded a three-year grant to increase the number of professionals trained to deliver high-quality oral health care to people with developmental disabilities in the San Francisco Bay Area. This funding will help the Special Care Clinic (SCC) provide rigorous education and experiential learning opportunities to over 570 dental students, residents and scholars, medical students and pharmacy externs who will handle over 13,870 visits over 3 years.


The Arc of the United States, Washington, DC

Grant Amount: $54,240Grant Date: May 2018

thearc.org

This project will work with key stakeholders—people with I/DD, special needs planning attorneys and healthcare professionals—to develop and disseminate model Power of Attorneys (POAs) that use plain language and recognize SDM for medical decisions. The Arc will gather and refine existing POAs with input from these groups and pilot them with stakeholders in Massachusetts.


International Organization for Adolescents (IOFA), Chicago, IL

Grant Amount: $40,000Grant Date: May 2018

iofa.org

IOFA was awarded funding for a project that will bring together leading anti-human trafficking and disability rights organizations from across the U.S. to address the increasing targeting, exploitation, and abuse of persons with disabilities by human traffickers. More than 250 healthcare practitioners (across California) will receive education, training and materials to identify and care for persons with disabilities who have been or are at risk of being trafficked for labor and/or sexual exploitation. Prevention efforts will include educating 12,500 persons with disabilities on how to protect themselves from human trafficking.


Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $75,000Grant Date: May 2018

autisticadvocacy.org

ASAN has developed a nationally-regarded Disability Policy Center over the last 5 years and provided robust, strategic advocacy at the state and national level on a number of fronts, including supported decision making, access to healthcare and other health policy topics. Through this grant, ASAN will continue and expand this work, with a focus on educating self-advocates and policymakers alike on issues relating to healthcare and people with developmental disabilities, ensuring that self-advocates have a voice in the national conversation on healthcare.


Association of University Centers on Disabilities (AUCD), Silver Spring, MD

Grant Amount: $40,000Grant Date: May 2018

aucd.org

The AUCD network was awarded funding to support the Keep the HEAT On (Health is for Everyone Action Team). The project builds on successful adoption of the American Medical Association’s (AMA) resolution to include education about the unique needs of people with Developmental Disabilities (DD) at undergraduate, graduate and continuing medical education for physicians. Although 20% of adults in the US have a disability, with 1 in 6+ having DD, there is currently no training standard on DD for physicians at all levels of training. Keep the HEAT On will be the second phase of a multiyear effort to better understand DD competency in medical education, learning from previous efforts, and linking these learnings into a shared action plan to include DD in medical education.


National Task Group on Intellectual Disabilities and Dementia Practices (NTG), Hamden, CT

Grant Amount: $100,000Grant Date: May 2018

aadmd.org/ntg

The Academy of Developmental Medicine and Dentistry (AADMD) and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), in partnership with the Department of Occupational Therapy at Thomas Jefferson University in Philadelphia, are developing a serial assessment tool that can be completed by caregivers of adults with ID and shared with their healthcare providers to assist in care and management of dementia over the course of this debilitating condition.  Through this two-year grant, the tool, the Serial Assessment of Function in Dementia (SAFD), will be used to assess the functional decline in adults with ID and dementia (ID). The prototype of the SAFD, once validated, has the potential to improve support, care and management of adults with IDD and their caregivers.


University of Kentucky’s Human Development Institute, Lexington, KY

Grant Amount: $50,000Grant Date: January 2018

hdi.uky.edu

The University of Kentucky’s Human Development Institute proposes to create a universally designed tool to aid with Supported Decision-Making (SDM) in the informed consent process. The tool will be a visual aid designed much like a graphic novel to appeal to our target audience, transition-age youth with IDD. This tool will contain images and plain language words that will help facilitate conversations between healthcare providers, patients with IDD, and their supporters (family members/caregivers) during the informed consent process.


National Disability Rights Network, Washington, DC

Grant Amount: $49,500Grant Date: January 2018

ndrn.org

The National Disability Rights Network (NDRN), working with Disability Rights Texas (DRTX), seeks to increase knowledge and respond to the barriers that exist in the use of Supported Decision-Making (SDM) by people with intellectual and developmental disabilities (I/DD) in the provision of healthcare. Through the process proposed, NDRN and DRTX will gain a better understanding of the concerns of healthcare providers regarding informed consent, legal capacity, and SDM, and use knowledge gained about these concerns to develop educational material targeted to health care providers, disability advocates, and family members in an effort to advance the use of SDM.


Arc of California, Sacramento, CA

Grant Amount: $50,000Grant Date: January 2018

thearcca.org

The Arc of California, in collaboration with the Burton Blatt Institute and KPS4Parents, propose to develop informed Supported Decision-Making best-practices as an alternative to conservatorship and a means of improving life outcomes, and to provide in-person and web-based training to people with I/DD, families, and professionals. The free trainings will be promoted and presented as an all-day “boot camp” and will be conducted in two locations within the state of California.  Additionally, a professionally produced online video series of the training will be made available to the general public.


University of Missouri-Kansas City, Kansas City, MO

Grant Amount: $50,000Grant Date: January 2018

ihd.umkc.edu

The Charting the LifeCourse (CtLC) Health Care Preferences and Supported Decision Making for People with IDD project seeks to enhance the partnership between medical professionals, adults with IDD, family members, and disability providers that supports informed choice and SDM practices on health care decisions. Utilizing a multi-level approach that enhances knowledge and skills, this initiative will provide training and coaching on SDM and facilitate effective communication with each target groups in the St. Joseph, Missouri area. A CtLC Healthcare Training and Coaching Toolkit will be developed and disseminated through this project.


UC Davis Center for Excellence in Developmental Disabilities, Sacramento, CA

Grant Amount: $80,000Grant Date: September 2017

ucdmc.ucdavis.edu/ddcenter

This project helps young people with developmental disabilities (approaching the transition to adulthood) increase their awareness of and access to Supported Decision Making options as well as to understand concerns about guardianship. The project’s target audience is young people with developmental disabilities and their families, as well as the people who serve them –  including educators, healthcare providers, Regional Center personnel and advocacy organizations.


American Civil Liberties Union Foundation, Inc., New York, NY

Grant Amount: $50,000Grant Date: September 2017

www.aclu.org

This project supports educating probate judges in California about alternatives to guardianship and to persuade the state court system to develop the expectation and practice that probate judges require the use of Supported Decision-Making (SDM) before imposing guardianship.


Medical College of Virginia Foundation, Richmond, VA

Grant Amount: $41,637Grant Date: September 2017

www.mcvfoundation.org

This two-year project supports closing the mental health care disparity in access to evidence-based, trauma-informed care experienced by people with intellectual and developmental disabilities (IDD). 


University of South Dakota Foundation, Sioux Falls, SD

Grant Amount: $39,484Grant Date: May 2017

usd.edu/medicine/center-for-disabilities

This support is for the training of pediatric, family practice, and adult care nurses. The training teaches them use of two tools: Transition Engagement Guide (TEG) and DocTalk. The tools were developed collaboratively with families, I/DD patients, pediatricians, nurses and other health professionals to facilitate successful healthcare transitions.


Positive Exposure, New York, NY

Grant Amount: $94,250Grant Date: May 2017

positiveexposure.org

The FRAME – Faces Redefining the Art of Medical Education: The “Big 6” project is a collaboration between Positive Exposure, the American Academy of Developmental Medicine and Dentistry, Special Olympics Smile, and the Cerebral Palsy Foundation. The FRAME project will present hallmark characteristics of  6 medical conditions with person-first philosophy. The project will enhance medical education institution’s training about intellectual disability, autism, cerebral palsy, down syndrome, fetal alcohol syndrome, and fragile x syndrome. 


Developmental Disabilities Nurses Association, Denton, TX

Grant Amount: $9,500Grant Date: May 2017

ddna.org

Support for the 25th Annual DDNA Education Conference, the Developmental Disabilities Nurses Association’s annual conference for nursing and healthcare professionals across the US. The conference offers ongoing training, continuing education credits, and opportunities to receive specialty certification through exam prep courses prior to sitting for the specialty certification examination while at the conference. Conference attendees are exposed to the latest research and methodologies employed in the delivery of services to persons with intellectual and developmental disabilities.


UC Davis Health, Davis, CA

Grant Amount: $4,000Grant Date: January 2017

ucdmc.ucdavis.edu/cme

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.


Down Syndrome Medical Interest Group-USA, Plymouth, MN

Grant Amount: $10,000Grant Date: January 2017

dsmig-usa.org

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. 


Special Care Dentistry Association, Chicago, IL

Grant Amount: $15,000Grant Date: January 2017

scdaonline.org

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.


University of Alaska Center for Human Development, Anchorage, AK

Grant Amount: $50,000Grant Date: January 2017

alaskachd.org

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.


Virginia Commonwealth University Foundation, Richmond, VA

Grant Amount: $50,000Grant Date: January 2017

vcuf.org

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 Rochester, Rochester, NY

Grant Amount: $50,000Grant Date: January 2017

urmc.rochester.edu

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.


Rush University Medical Center, Chicago, IL

Grant Amount: $10,000Grant Date: September 2016

rush.edu

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 Massachusetts Medical School-Shriver Center, Charlestown, MA

Grant Amount: $50,000Grant Date: September 2016

umassmed.edu

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. We will develop, implement, and evaluate a pilot nursing curriculum for its feasibility, efficacy, and sustainability. Using pre- and post-tests, we 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.


UC Regents, San Francisco, CA

Grant Amount: $22,500Grant Date: September 2016

ucsf.edu

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.


The Arc of the United States, Washington, DC

Grant Amount: $52,462Grant Date: September 2016

thearc.org

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.


The University of North Carolina at Chapel Hill, Chapel Hill, NC

Grant Amount: $36,030Grant Date: September 2016

cidd.unc.edu

We endeavor 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 ultimately in other US states. Using both didactic and experiential components, we 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.  We intend to later extend this opportunity to other APPs such as Physician’s Assistants.


Association of University Centers on Disabilities, SilverSpring, MD

Grant Amount: $40,000Grant Date: September 2016

aucd.org

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.


Special Olympics, Inc, Rochester, NY

Grant Amount: $120,000Grant Date: May 2016

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.


Office of Developmental Primary Care – UCSF, San Francisco, CA

Grant Amount: $225,000Grant Date: May 2016

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.


Massachusetts General Hospital, Boston, MA

Grant Amount: $100,000Grant Date: May 2016

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 particular 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.


JVS – Tri-County Dental Program, Southfield, MI

Grant Amount: $32,000Grant Date: May 2016

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.


Coalition for Compassionate Care of California, Sacramento, CA

Grant Amount: $35,000Grant Date: May 2016

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.


University of Utah Hospitals and Clinics, Salt Lake City, UT

Grant Amount: $5,000Grant Date: May 2016

http://healthcare.utah.edu/uni/home/

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, we 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.).


Down Syndrome Connection of the Bay Area, Danville, CA

Grant Amount: $5,000Grant Date: January 2016

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 a particular emphasis on adults and older adults.


Cleveland Clinic, Cleveland, OH

Grant Amount: $50,000Grant Date: January 2016

my.clevelandclinic.org

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 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.


Vanderbilt University, Nashville, TN

Grant Amount: $50,000Grant Date: January 2016

vanderbilt.edu/osp/

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. 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.


University of Arizona Foundation for the benefit of Sonoran UCEDD, Tucson, AZ

Grant Amount: $49,046Grant Date: January 2016

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. We 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.


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

Grant Amount: $50,000Grant Date: January 2016

None provided

DD Health Home is integrated model of health care (primary&specialty care, MH, case management) for people with IDD.We propose to evaluate DD Health Home from the perspectives of the triple aim: patient outcomes, patient satisfaction & cost efficiency.Through its 6 community based sites the DD Health Alliance has collected extensive data from more than 1000 IDD patients in N.J. & N.Y. RFK UCEDD will aggregate & analyze data on IDD patients including: presentation characteristics & comorbidities, functional health, MH status, satisfaction of care &health utilization & costs.Due to scope & size of database, additional research questions may be studied but will be beyond scope of this proposal.


University of New Hampshire Institute on Disability/UCED, Concord, NH

Grant Amount: $50,000Grant Date: January 2016

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. 


University of Utah Hospitals and Clinics, Salt Lake City, UT

Grant Amount: $49,983Grant Date: January 2016

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 it’s ability to provide cost-effective care for individuals with IDD.


Positive Exposure, New York, NY

Grant Amount: $97,175Grant Date: September 2015

positiveexposure.org

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.


The Council on Developmental Disabilities, Louisville, KY

Grant Amount: $44,031Grant Date: September 2015

councilondd.org

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.


The Resource Exchange, Colorado Springs, CO

Grant Amount: $50,000Grant Date: September 2015

tre.org

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.


American Academy of Developmental Medicine and Dentistry (AADMD), Prospect, KY

Grant Amount: $20,000Grant Date: September 2015

aadmd.org

This is a sponsorship request to support the AADMD strategic planning retreat.


Special Care Dentistry Association, Chicago, IL

Grant Amount: $10,000Grant Date: September 2015

scdaonline.org

This is a sponsorship request to support the SCDA/iADH international educational meeting in Chicago in April, 2016.


UC Regents, San Francisco, CA

Grant Amount: $15,000Grant Date: May 2015

UCSF.edu

This is a request for sponsorship of the 15th Annual Developmental Disabilities: An Update for Health Professionals event.


People First of California, Sacramento, CA

Grant Amount: $10,000Grant Date: May 2015

peoplefirstca.org

Special Hope Foundation funds will help off-set the cost of the People First Statewide Gathering. The Gathering is 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 will serve over 200 individuals and focus on health, because many of individuals are facing a number of issues that lead to them leaving unhealthy lives.


The Achievable Foundation, Culver City, CA

Grant Amount: $60,000Grant Date: May 2015

achievable.org

Grant funding would 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 could 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. 


American Civil Liberties Union Foundation, Inc., New York, NY

Grant Amount: $50,000Grant Date: May 2015

aclu.org

The Disability Rights Program will 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, we aim 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.


Special Care Dentistry Association, Chicago, IL

Grant Amount: $9,900Grant Date: May 2015

scdaonline.org

The SCDA will assemble a group of experts in the care of special needs populations and postgraduate dental education to 1. Study existing postdoctoral programs that provide training in the care of patients with special needs, 2. Envision an exportable construct that would serve as the framework for a new category of dental residency training program,3. Create comprehensive educational standards for such programs, and 4. 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.


Orange Grove Center, Chattanooga, TN

Grant Amount: $50,000Grant Date: January 2015

orangegrovecenter.org

Orange Grove Center with Semo Healthcare and Slayback Health and expert consultants Seth Keller, Philip McCallion, Lucy Esralew  & Rick Rader will use the planning period 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.


University of Arizona Foundation on Behalf of Sonoran UCEDD, Tucson, AZ

Grant Amount: $50,000Grant Date: January 2015

Sonoranucedd.fcm.arizona.edu

The Sonoran UCEDD and the Arizona Telemedicine Program (ATP) will 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, we will concentrate our efforts on Arizona’s Hispanic border communities and American Indian Reservations.   We will assess the areas of greatest community need for telemedicine services; bring together health care providers in Tucson with the target communities to plan for providing telemedicine and develop a comprehensive implementation plan.  Plan will include 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.


Community Dental Services, Inc., Albuquerque, NM

Grant Amount: $26,559Grant Date: January 2015

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.


American Academy of Developmental Medicine and Dentistry (AADMD), Prospect, KY

Grant Amount: $75,000Grant Date: January 2015

aadmd.org

Funds will support the AADMD 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.


Kaiser Foundation Research Institute (KFRI), a Division of Kaiser Foundation Hospitals, Oakland, CA

Grant Amount: $100,000Grant Date: September 2014

autismresearch.kaiser.org

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 1) determine barriers and facilitators of a smooth transition from pediatric to adult care for patients with ASD, 2) develop tools and health care delivery processes to improve the transition, and 3) 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.


The Office of Developmental Primary Care, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2014

odpc.ucsf.edu

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.


The ARC San Francisco, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2014

thearcsf.org

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.


Autism Self Advocacy Network (ASAN), Washington, DC

Grant Amount: Grant Amount: $300,000Grant Date: September 2014

autisticadvocacy.org

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. 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.


Starr Center on Intellectual and Developmental Disabilities , Brandeis University, Waltham, MA

Grant Amount: $40,000Grant Date: May 2014

http://lurie.brandeis.edu/about/starr.html

Funds were awarded to Brandeis University for a planning grant to design a nurse practitioner model for delivering primary and coordinated care to adults with disabilities. This project is a collaborative effort between the Brandeis Starr Center, CLASS. a day habilitation agency, University of Massachusetts at Lowell School of Nursing, and state agencies. Products will include a logic model of the intervention and materials for training nurses to provide care and service coordination.


Westchester Institute for Human Development, Valhalla, NY

Grant Amount: $55,877Grant Date: May 2014

https://www.wihd.org

WIHD was granted funding over three years for their Family Medicine Resident Rotation project. They will develop, implement and evaluate training on Developmental Medicine for their medical school residents. This training will include an elective rotation in their adult medical outpatient clinic, an annual workshop for first year residents, and two Developmental Medicine Grand Rounds per year at their Family Medicine Residency Program.


JFK Partners, UCEDD and LEND, University of Colorado, Aurora, CO

Grant Amount: $50,000Grant Date: January 2014

www.ucdenver.edu/academics/colleges/medicalschool/programs/JFKPartners/Pages/JFK%20Partners.aspx

A  four year grant was awarded to JFK Partners for building upon an existing student group “Disability Dialogue” that is committed to examining health care disparities affecting individuals with developmental disabilities.   This funding will serve to provide national affiliation and structure, incentivize students during their years of preparation, and solidify community partnerships. 


Sonoran UCEDD, Tucson, AZ

Grant Amount: $50,000Grant Date: January 2014

sonoranucedd.fcm.arizona.edu

A four year grant was awarded to the Sonoran UCEDD for their “Arizona Youth in Transition” project.  The Sonoran UCEDD will work with the University of Arizona College of Medicine and their established patient centered medical home for adults with developmental disabilities to increase the capacity of future and current health care providers to facilitate effective transitions from pediatric to adult health care for youth with DD. This will be accomplished through building a strong inter-professional AADMD student chapter, identifying needed skills, creating curriculum and providing targeted technical assistance. 


University of Alaska Center for Human Development, UCEDD and LEND, Anchorage, Alaska

Grant Amount: $50,000Grant Date: January 2014

www.uaa.alaska.edu/centerforhumandevelopment/

Funding was provided over four years for their “Improving Healthcare for Adults with IDD in Alaska“ project.    This project will use a multi-pronged approach to improve healthcare services for adults with I/DD in Alaska by:  developing training and resources for healthcare providers; increasing student awareness of the healthcare needs by establishing a student chapter of the AADMD; and providing health promotion materials to individuals and families/caregivers.  


University of Rochester’s UCEDD and LEND, Rochester, NY

Grant Amount: $50,000Grant Date: January 2014

www.urmc.rochester.edu/childrens-hospital/developmental-disabilities/scdd.aspx

Funding was provided for their “ Special Olympics Team Trainer Program.”  The University of Rochester and Special Olympics of NY will collaborate to implement and test a Team Trainer Program, where health care students will be partnered with Special Olympic athletic teams to increase athletes’ participation in health care screenings, support coaches, facilitate follow-up care with healthcare providers, and incorporate health and wellness activities into team trainings. 


Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $75,000Grant Date: September 2013

www.autisticadvocacy.org

A grant was awarded to ASAN to support the development of the ASAN Disability Policy Center.  The policy center will provide resources to advocates on key policy issues impacting the intellectual and developmental disability community, with a special emphasis on addressing health disparities and the quality of both health care and long term services and supports for the I/DD community.


Office of Developmental Primary Care (UCSF), San Francisco, CA

Grant Amount: $75,000Grant Date: September 2013

developmentalmedicine.ucsf.edu

Funds were awarded to provide continued support to ODPC to build primary care health care infrastructure for adults with developmental disabilities. Through this grant, ODPC will engage self-advocates, parents and disability advocacy organizations in policy advocacy and will further their clinical, operational and training activities.


Rose F. Kennedy UCEDD, Albert Einstein College of Medicine of Yeshiva University, Bronx, NY

Grant Amount: $50,000Grant Date: September 2013

www.einstein.yu.edu

A three year grant was awarded to the RFK UCEDD to develop a formal Care Coordination model where case management services will be integrated in the Health Home model.  This project is a collaboration between the RFK UCEDD and the  Developmental Disabilities Health Alliance of New York. 


University of Chicago, Chicago, IL

Grant Amount: $40,000Grant Date: May 2013

transitioncare.uchicago.edu

 A grant was awarded to develop a collaborative health care model to provide mental health care services within a primary care setting. As part of this model, a dedicated case manager will be hired to strengthen care coordination and to develop a neuropsychological battery of assessments.


The Achievable Foundation, Culver City, CA

Grant Amount: $90,000Grant Date: May 2013

achievable.org/Programs_Services/The_Achievable_Clinic/

Funds were awarded to provide support to the Achievable Clinic during their first year of operation. The clinic is a community health center developed to provide culturally appropriate, coordinated, high quality and comprehensive primary and specialty care services in a medical home setting for individuals with developmental disabilities.


Coalition for Compassionate Care of California, Sacramento, CA

Grant Amount: $31,440Grant Date: May 2013

coalitionccc.org

 Funding was provided to CCCC to perform an environmental scan and make recommendations relating to conservatorship issues in California for healthcare decision making for adults with developmental disabilities.


The Elizabeth M. Boggs Center, New Brunswick, NJ

Grant Amount: $50,000Grant Date: January 2013

rwjms.umdnj.edu/boggscenter/

A planning grant was awarded for the development of “The New Jersey Developmental Disabilities Transition to Adult Health Care Forum”.  This collaborative process will focus on building the capacity of the adult health care system and developing an action blueprint for transition to adult health in New Jersey.


The Vanderbilt Kennedy Center, Nashville, TN

Grant Amount: $50,000Grant Date: January 2013

kc.vanderbilt.edu/site/default.aspx

Funding was provided for the creation of an electronic toolkit for primary care of adults with developmental disabilities.  This online resource will provide health care practioners with additional resources to accurately assess and treat their patient population.


Westchester Institute for Human Development, Valhalla, NY

Grant Amount: $50,000Grant Date: January 2013

www.wihd.org

A grant was awarded to develop and field test training modules designed to guide parents and their young adult children with developmental disabilities through successful transitions from pediatric to adult health care.  This online tool will address a wide variety of choices faced during the transition period.


Kaiser Permanente, Oakland, CA

Grant Amount: $60,000Grant Date: September 2012

www.autismresearch.kaiser.org

A research grant was awarded to the Kaiser Foundation to utilize their electronic health care records to look at the prevalence of adults with autism.  In addition, the data will be evaluated to investigate comorbidities, utilization of medications, and access to primary health care.


Office of Developmental Primary Care (UCSF), San Francisco, CA

Grant Amount: $100,000Grant Date: September 2012

developmentalmedicine.ucsf.edu

A grant was provided to UCSF’s Office of Developmental Primary Care to support the development of self-advocate/caregiver leadership in the area of health care access.  This grassroots effort will educate and engage thought leaders in order to improve heath care delivery.  Training and policy materials will be developed that reflect the priorities, preferred strategies, and values of the developmental disability community.


UCSF Office of Continuing Medical Education, San Francisco, CA

Grant Amount: $30,000Grant Date: September 2012

www.cme.ucsf.edu

A three year grant was provided to the Office of CME at UCSF to underwrite the costs of their annual conference titled, “Developmental Disabilities:  An Update for Health Professional.”  This two day event provides the latest information on health issues affecting those with developmental disabilities.


American Academy of Developmental Medicine and Dentistry (AADMD),  

Grant Amount: $150,000Grant Date: May 2012

www.aadmd.org

Funding was provided to create and promote a national “gold standard” curriculum in the care of adults with intellectual and developmental disabilities (IDD) to primary care residency programs, implementation of the curriculum in pilot residency programs, development of a companion textbook, and hosting two webinars on their website.  The webinars will focus on the topics of dementia and emergency care and their impact on individuals with IDD.


Autistic Self Advocacy Network (ASAN), Washington, DC

Grant Amount: $50,000Grant Date: May 2012

www.autisticadvocacy.org

A grant was provided to ASAN to develop a policy brief series to educate the disability professional community and the public about healthcare barriers, challenges, and needs of adults and youth with intellectual and developmental disabilities. These briefs will inform discussions and solution development around best practices and policies to improve service-delivery for people with intellectual and developmental disabilities to foster their wellbeing and quality of life.


Oak Hill, Hartford, CT

Grant Amount: $16,000Grant Date: May 2012

www.ciboakhill.org

Oak Hill’s Relationship and Sexuality Education division will use our grant to create a CD-ROM with accompanying manual to increase health care provider competency to address reproduction and sexual health with individuals with intellectual and/or developmental disabilities.  These best teaching practices and additional resources will be available as print material and on their website.


Coalition for Compassionate Care of California, Sacramento, CA

Grant Amount: $35,000Grant Date: September 2011

www.finalchoices.org

A grant was awarded to the Thinking Ahead project, a program that addresses end of life issues with the use of materials and webinars for adults with developmental disabilities and their caregivers. Funds were provided for the education of community care providers and healthcare professionals.


Disability Rights Education and Defense Fund (DREDF), Berkeley, CA

Grant Amount: $35,000Grant Date: September 2011

www.dredf.org

DREDF received funding for their campaign for healthcare justice.  The “Health Care Stories Project” will document the challenge of accessing healthcare highlighting some of the barriers and stereotypes faced by individuals with developmental disabilities.  These brief video stories will place a human face on real issues that are poorly understood in the medical community.


East Bay Innovations, San Leandro, CA

Grant Amount: $40,000Grant Date: September 2011

www.eastbayinnovations.org

Adults with developmental disabilities experience a high turnover rate of caregivers.  As a result, they are frequently put in the position of communicating their needs and preferences to staff, a process that can become both tedious and tiring.  East Bay Innovations was awarded a grant to develop a comprehensive video-based training program that will sensitively address all aspects of an individual customer’s care for new staff members, substitute staff members, and medical/hospital personnel.


The Achievable Foundation, Culver City, CA

Grant Amount: $40,000Grant Date: September 2011

www.achievable.org

Support was provided to the Achievable Clinic, a healthcare center that provides developmentally and culturally appropriate, comprehensive, high-quality and coordinated care to individuals with developmental disabilities.  Funds will be used to expand current services and create a model community-based care center for this population.


The Arc of San Francisco, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2011

www.thearcsf.org

Continued support was provides for the work of the Developmental Health Collaborative (University of California, San Francisco, Golden Gate Regional Center, Health Plan of San Mateo, The Arc of San Francisco) in their effort to address barriers in healthcare access for adults with developmental disabilities.


The Arc of San Francisco, San Francisco, CA

Grant Amount: $100,000Grant Date: September 2009

www.thearcsf.org

The Arc was awarded a grant to continue their work with the University of California San Francisco’s Department of Family and Community Medicine, the Golden Gate Regional Center, San Francisco’s Department of Public Health and Health Plan San Mateo to develop models on how medical professionals are trained and public policy is influenced to affect the changes necessary to provide better health care for people with developmental disabilities.