Millions of children and adults living with intellectual or developmental disabilities (ID/DD) rely on long-term services and support (LTSS) offered through the state Medicaid program to meet their complex health needs. Medicaid LTSS enables many to achieve personal goals and lead fulfilling lives. These individuals are often some of the most vulnerable, highest-cost clients in the healthcare system.
But for many, these services are not attainable, nor is the process easy to navigate. As a mom and caregiver to a child living with ID/DD, I can attest to the extensive waiting lists to access these services via Medicaid with significant unknowns, from understanding what services are available, navigating approvals, and ultimately accessing the support needed for children and families. An estimated 5.3 million children live with intellectual and developmental disabilities. However, only about 1.3 million receive publicly funded long-term services, leaving 4 million children living on waiting lists for crucial services.
I knew in the early months of our son’s life that something was different. During his first months, we carried our newborn from specialist to specialist, seeking a diagnosis. Once we received the diagnosis, we gained entry into a complex world of services and support whereby eligibility criteria and goals vary depending on age, income level, and medical need. Then add educational objectives and health needs.
To the naked eye, you see a happy, smiley four-year-old boy, and that’s exactly who he is. But he also has extensive long-term support needs due to a genetic condition, making his speech today extremely limited and causing intellectual disabilities. Our son is one of the 4 million not receiving publicly funded services. As we plan for his future, our family is already facing a 10+ year wait for a Medicaid waiver slot for LTSS services. These services are necessary to meet his long-term needs.
Our delivery system has improved as LTSS has moved closer to the child with services offered in the home or community. Growing medical evidence proves the success of home and community-based services (HCBS) in helping individuals with ID/DD lead satisfying lives in their communities. HCBS includes everything from support with activities of daily living (i.e., eating, bathing, toileting), assistive devices to facilitate effective communication, job skills training, skills development to remain safely and independently in the community, and respite support for caregivers. At the heart of these services is the idea that individuals have choice and freedom. Their strengths, goals, and interests must be woven into every decision. For many, these crucial services are instrumental in promoting a sense of belonging in the community and empowering them to attain the skills most important to them.
HCBS isn’t a novel idea, but the pandemic showed the critical importance of these services. Today, there is near-universal agreement that the expansion of HCBS is the appropriate policy decision. Yet this policy choice faces significant obstacles. The rising cost of HCBS combined with a growing population of individuals living with ID/DD has made it difficult for states to meet all the needs of all individuals. Low wages and pandemic fatigue have resulted in a shrinking workforce, causing states to identify innovative yet sustainable ways to serve more with less. These challenges can be overcome, but require attention and analysis to appropriately guide investment and policy.
So why now?
In 2021, the Biden Administration and Congress provided states with over $400 million in tools and funding to strengthen, enhance, and expand these essential services. State and health leaders need to seize this opportunity to transform their delivery systems and maximize their ability to serve more clients. Using data analytics, policymakers can make informed decisions and evaluate program impact. Robust data collection and analysis enable a redesign of waiver services to improve outcomes, advance equity, attract a high-quality workforce, and think creatively for future demand.
Innovative ways state leaders are using data and analytics to expand, enhance, and transform their HCBS to serve more individuals and advance equity include:
– Linking siloed data for enhanced situational awareness and data-driven policies: States are seeking to leverage programmatic and quality-of-life data across HCBS and the populations they serve. But these datasets are often siloed and don’t lend themselves to understanding individual outcomes. By linking data and prioritizing the development of ID/DD HCBS quality outcome metrics, states better understand a normalized comparison of how services are used and by whom. Perhaps more importantly, integrating data enables states to gain a more holistic understanding of individuals’ needs, potential gaps in care, underreported critical incidents, and also understand the size and nature of the eligible population but not currently receiving services. Knowing the needs of the total population will inform the strategic investments necessary to meet future needs.
– Using novel data sources to strengthen models of care: Person-centered planning is foundational to successful HCBS programs, but information such as strengths, goals, and needs do not lend itself to structured fields and forms. These insights are often locked in free-form text fields or handwritten notes. Unlocking this textual data gathered with survey tools and assessment forms is critical to evolving services to meet needs and do so in an equitable manner. Text analytics can unlock this trove of data and power decisions that can have the most meaningful impact.
– Strengthening provider networks: HCBS systems only work if there is sufficient community capacity to meet individuals’ needs. Providers and caregivers are essential to ensuring the ID/DD population exceed their potential. The pandemic shrank these essential frontline workers, diminishing the supply of trained professionals. Workforce analytics can assist policymakers in identifying the drivers of provider loss and developing policies to improve capacity.
– Advancing health equity: States understand they must make available culturally competent training and resources for individuals and their families. Speaking to all populations will assist in the navigation of the HCBS system. Linking data sets across multiple programs ensures HCBS services are provided in a person-centered, equitable way and creates opportunities to recruit and retain a high-quality workforce.
My son, Henry, is just beginning his journey through these programs like countless other individuals. Now 5, he sits on a wait list for HCBS services with an estimated enrollment of 2034. Like many before him, Medicaid waiver services during his most formative years are not available to him. While our family is prepared for this long journey, I often think of those less equipped to navigate the complicated HCBS system. My family and I seek the best care for not only our son but for all those similarly situated families that want their children to achieve their full potential. My hope is that policymakers will put their data assets to work and uncover actionable insights for targeted investments and crucial funding. Together, we can improve access to services as well as develop responsive programs for all families.
About Sarah Newton
Sarah Newton has spent her career working alongside government health agencies to improve health outcomes through technology. At SAS, she leads a team of experts devoted to helping agencies use analytics to transform population health, health disparities, value-based care, public health modernization, and long-term services and support. Newton has a Master’s in Public Health and extensive experience working on health policy and budget at the federal and state level.