The foundation is committed to transforming the lives of individuals and families living with intellectual disability through advocacy, education, awareness, and innovative programs. People living with intellectual disability are facing multiple crises that have deleterious effects on their health and well-being.
Medicaid, a federal health care insurance program, is critical for people living with intellectual disability who may not have access to employer-based or other private coverage and require assistance with activities of daily living throughout their lifetimes. Prior to the 1970s, people with intellectual disability were forced to live in institutions. It wasn’t until the late 1970s and 1980s that we, as a society, began to move away from mass institutionalization of people with intellectual disability. In 1981, the Home and Community Based Services (HCBS) waiver program was established in order for States to furnish under Medicaid, as an alternative to institutional care, an array of services that are otherwise not covered under the Medicaid program such as case management services, homemaker services, home health aide services, personal care services, and adult day care services. People living with intellectual disability rely on these federal and state funded HCBS waivers to live and participate in their communities. In 1999, the United States Supreme Court ruled in Olmstead v. L.C. that public entities must provide community-based services to persons with disabilities, and confining persons with disabilities to institutions constitutes discrimination in violation of title II of the Americans with Disabilities Act.
HCBS are subject to federally approved waivers, but services are optional to provide by each state. Because HCBS waivers are optional and do not transfer from state to state, there is no uniform coverage and most states have excessively long waitlists for services, oftentimes decades-long waitlists. Although there is no standard reporting requirement, estimates show at least 500,000 people with intellectual disability are awaiting HCBS waivers that provide assistance with everyday activities like bathing, dressing and preparing meals so that they may live and thrive within their communities. Without these waivers, people with intellectual disability are left with no other option than to live at home with an aging parent who is typically their primary caregiver.
The foundation will focus on the lack of affordable and accessible community-based housing and day programs for people living with intellectual disability who require more than minimal daily living support. Our goal is to create both small group homes, and large-scale communities, with access to meaningful and enriching day programs, across the country.
People who provide support to individuals living with intellectual disability are known as Direct Support Professionals or DSPs. Most DSPs love their job and the clients they serve but are driven from the field due to poverty level wages. There is a significant workforce crisis within the intellectual disability community due in large part to the systemic underfunding of social services.
Modestly increased wages alone will likely not create equilibrium between supply and demand of DSPs. We must strive to revitalize this industry with related incentives that will attract and maintain DSPs and ensure the highest quality of services for individuals living with intellectual disability.
The foundation will advocate for funding and policy change to:
Solas is the Irish word for ‘light.’ Camp Solas intends to bring light into the lives of individuals and families living with intellectual disability. We expect to break ground on this initiative in 2027.
Education, networking, and respite are critical for families living with intellectual disability. Camp Solas will offer caretakers the opportunity to attend an inclusive retreat where they will learn about available services and programs for their loved ones while forging deep connections with families who are navigating similar challenges.
Children and young adults living with intellectual disability will have qualified counselors and volunteers who will provide the requisite support for daily group activities, arts & crafts, team sports, and adventures.