Optimizing HCBS and Healthcare Spending for People with IDD in a Time of Medicaid Cuts: 10 Strategies for Better Outcomes and Smarter Spending

By Aliah Farley

As states prepare for significant shifts in Medicaid funding, providers and policymakers are asking the same urgent question: How can we continue delivering high-quality services while managing tighter budgets?

The current healthcare system for people with IDD faces unique challenges, including persistent health disparities and the high prevalence of chronic conditions that often co-occur with intellectual and developmental disabilities. These issues highlight the need for improved integration and provider training to address both acute and long-term health needs.

In a recent IntellectAbility webinar, Dr. Craig Escudé, President of IntellectAbility, and Daleigh Tallent, RN, MSN, CDDN, Clinical Director, shared strategies for strengthening Home and Community-Based Services (HCBS) and healthcare for people with intellectual and developmental disabilities (IDD). Various departments at the state and organizational level are responsible for implementing person-centered initiatives and optimizing HCBS. Together, they outlined the challenges ahead and provided ten actionable strategies to improve outcomes while controlling costs.

The Medicaid Landscape in 2025

With the recent federal budget reconciliation bill, Medicaid and CHIP face projected funding reductions of nearly $1 trillion over the next decade. States will feel these impacts differently, but the ripple effects could include:

• Fewer HCBS waiver slots and longer waitlists
• Increased risk of institutionalization due to loss of community supports
• Staffing shortages and provider agency closures
• Reduced access to behavioral health services
• Increased administrative barriers, such as six-month re-verifications
• Changes in eligibility criteria that may affect who is eligible for Medicaid-funded programs and long term services

Reductions in payments to providers and changes in private insurance coverage may further limit access to care for people with intellectual and developmental disabilities (IDD), especially for specialized therapies and services not fully covered by public programs.

While these possibilities paint a concerning picture, Dr. Escudé emphasized a forward-focused approach: “I don’t like to operate by scaring people. I like to say, okay, this is where we are. These are the things that we’re looking at. So, what can we do?”

The increased risk of institutionalization is particularly concerning, as it may lead to more individuals with IDD being placed in facilities or institutions, such as Intermediate Care Facilities/Intellectual Disabilities (ICF/IID), rather than receiving community-based supports. State-supported living centers and other government-supported facilities continue to provide supported care for those with higher medical and behavioral needs, highlighting the ongoing importance of both institutional and community-based options.

Ten Strategies for Optimizing HCBS and Spending

Optimizing Home and Community-Based Services (HCBS) for people with intellectual and developmental disabilities (IDD) requires understanding their unique needs and the benefits of integrated systems. These strategies aim to improve the person’s ability to live independently and achieve better health outcomes.

1. Prioritize Prevention
   Early detection of health issues, especially in children, can improve outcomes by enabling timely intervention and support. For example, screening for physical disabilities or chronic conditions in children allows for early treatment and assistance, reducing suffering, preventing ER visits, and lowering costs.
2. Focus on High-Risk Populations
   Identify high-risk persons and patients at greatest risk of health destabilization by understanding their chronic conditions, affected body systems, and social context. This helps tailor treatment, assistance, and resources to those who need them most, improving outcomes and ensuring that care is patient-centered.
3. Leverage Data and Predictive Tools
   Use data and predictive tools across different provider types and systems to provide services more efficiently. This enables providers to understand patient needs, predict hospitalizations, and intervene early, improving care coordination and resource allocation.
4. Strengthen Care Coordination
   Integrate medical, behavioral, mental health, and oral health supports, as well as medicine, to prevent duplication and missed needs. Addressing both physical disabilities and mental health needs brings significant benefits to persons with IDD. Healthcare providers play a key role in coordinating care and providing treatment for both acute and chronic conditions.
5. Employ Technology Wisely
   Use telehealth, remote monitoring, and data sharing to reduce costly crises. These methods benefit persons with IDD by making healthcare more accessible, especially for those with mobility or transportation challenges.
6. Adopt Value-Based Payment Models
   Value-based payment models incentivize stabilization and improved quality of life over service volume. These models result in less effort and more naturally integrated care planning, making it easier for providers and patients to update and implement service plans.
7. Invest in Workforce Training and Retention
   Equip staff with IDD-specific training, teaching methods, and person-centered thinking skills to reduce turnover and improve care. Teaching staff to recognize and support the body’s health needs, including those related to physical disabilities, helps them better understand and implement person-centered thinking skills.
8. Reduce Reliance on High-Cost Settings
   Expand crisis stabilization options and IDD-focused telehealth to prevent unnecessary hospitalizations. Support people in their own homes and communities to reduce reliance on high-cost facilities and institutional care. For example, the Texas Home Living Program (TxHmL) supports individuals with IDD living with their families or in their own homes, promoting independence and community integration.
9. Address Social Determinants of Health (SDOH)
   Screen for food, housing, and transportation needs that drive health outcomes. Social services and community-based programs provide assistance to families and individuals, addressing social determinants of health and supporting participation in their communities.
10. Engage People and Families in Planning
    Build truly person-centered plans that reflect what people actually need and want. Person-centered thinking skills are essential for supporting self-direction and promoting positive control in service planning. Involve family and family members in planning and decision-making and ensure understanding and respect for the person’s ability and preferences. Supporting individuals in this way leads to more effective, individualized care and better health outcomes.

How IntellectAbility Supports These Strategies

The strategies outlined aren’t theoretical. They are already in practice through IntellectAbility’s tools, training, and services. The aims of IntellectAbility’s initiatives are to enhance independence, self-direction, and quality of life for people with IDD, while providing measurable benefits such as improved health outcomes, increased responsiveness, and better access to integrated care.

• Health Risk Screening Tool (HRST®)
  • The HRST is the only validated, standardized tool designed to detect health destabilization early in people with IDD.
  • It identifies risks across 22 health domains, providing actionable steps for caregivers and clinicians.
  • States, provider agencies, various departments, and State Supported Living Centers use HRST data to guide staffing, allocate resources, improve care, and even predict hospitalizations.
  • Results are measurable: fewer ER visits, fewer urgent care trips, decreased falls, reduced unnecessary medications, and longer, healthier lives.
• The IntellectAbility Academy
  • An eLearning platform offering IDD-specific courses for staff at every level.
  • Courses on the “Fatal Five” (the top preventable causes of death for people with IDD) equip direct support professionals, nurses, and clinicians with lifesaving knowledge.
  • The Academy uses a variety of teaching methods, including interactive modules and scenario-based learning, to impart person-centered thinking skills and reinforce best practices.
  • Accessible 24/7 and designed to reduce training costs while improving staff retention.
• Curriculum in IDD Healthcare
  • A credentialed program that prepares physicians, nurse practitioners, healthcare providers, and other clinicians to deliver competent, person-centered care to people with IDD, a population often underserved in traditional medical education.
  • These programs offer significant benefits, such as improved care quality, increased provider competency, and better health outcomes for people with IDD.
• Person-Centered Practices
  • IntellectAbility provides training and coaching to help organizations embed person-centered thinking and planning into their culture.
  • These efforts focus on supporting staff and organizations in adopting and sustaining person-centered approaches for improved service planning and support.
  • This not only improves quality of life but also aligns directly with HCBS requirements and value-based care initiatives.

Dr. Escudé and Daleigh Tallent emphasized that the intersection of prevention, data, and training is where costs are lowered and lives are saved. IntellectAbility sits at that intersection.

Moving Forward

Medicaid funding challenges are real, but so are opportunities to innovate, collaborate, and prevent crises before they happen. By applying these strategies—and using tools like HRST, Academy training, and person-centered planning—providers can protect HCBS, support people with IDD, and stretch every Medicaid dollar further.

Want to learn more?

• Watch the full webinar here
• Download our free white paper on the 10 strategies
• Explore how IntellectAbility can help your organization

Supporting Aging People with IDD: Key Insights from Pam Merkle and Dr. Craig Escudé

By Aliah Farley

As life expectancy increases, people with intellectual and developmental disabilities (IDD) are living longer than ever before. This presents both opportunities and challenges for service providers, families, and healthcare professionals.

In a recent IDD Perspectives webinar, Pam Merkle, Executive Director of the Association on Aging with Developmental Disabilities, joined Dr. Craig Escudé, President of IntellectAbility, to discuss the unique issues people with IDD face as they age and practical strategies to help them thrive.

Shared Concerns in Aging

Pam opened the discussion with a powerful reminder: the concerns people with IDD experience as they age are largely the same as those faced by the general population.

Drawing on surveys of adults with IDD, she highlighted the most frequently mentioned worries:

• Dementia
• Depression
• Health problems
• Loneliness
• Medication side effects

Underlying many of these issues is the theme of loss, the loss of friends, family, independence, mobility, and sometimes even one’s home or trusted providers. “For people with IDD,” Pam explained, “loss often happens at an accelerated pace and with fewer supports in place.”

A Proactive Approach to Healthy Aging

Too often, services for people with IDD become reactive, addressing crises after they happen. Pam emphasized the importance of taking a proactive approach instead, fostering health, identity, and belonging long before problems arise. This aligns with the concept of healthy aging, which focuses on maintaining functional ability and overall well-being throughout life.

Her “Healthy Recipe for Aging” includes:

• Exercise and nutrition: supporting physical health through movement and balanced diets. These activities offer significant benefits for maintaining physical abilities and promoting healthy aging.
• Cognitive stimulation: encouraging brain health through puzzles, memory games, and activities. Cognitive stimulation, along with education, helps preserve cognitive abilities and other skills, supporting cognitive resilience in older adults.
• Friendship development: building supportive social networks to prevent isolation. Social connection provides benefits for emotional health and helps maintain other skills important for daily living.
• Identity and reminiscence: affirming who people are through meaningful roles, hobbies, and life stories.
• Combating loneliness: creating opportunities for connection, purpose, and joy.

Education is a key factor that supports healthy aging and cognitive resilience. In addition to these, other factors such as social and environmental influences also contribute to the aging process and overall health outcomes.

Pam illustrated this with creative programs developed at her agency, such as “Senior Hotshots,” where older adults with IDD can redefine themselves not only by age, but by the unique talents and interests that shape their identities. Through these programs, older adults with IDD can contribute to their communities, sharing their experiences and skills.

The results, she noted, are striking: fewer emergency room visits, improved mental health, and stronger self-esteem. These benefits highlight the positive outcomes of ongoing efforts to promote healthy aging and address the various factors that influence well-being in older adults.

Addressing Dementia and Cognitive Decline

When someone with IDD shows signs of memory loss, Dr. Escudé stressed the need to rule out medical causes first. Identifying risk factors for dementia and cognitive decline in patients with IDD is crucial for early detection and management. “Don’t jump immediately to dementia,” he cautioned. Hearing or vision loss, medication side effects, thyroid conditions, depression, or even untreated pain can mimic dementia. Comprehensive medical care and timely intervention are essential to address these issues and improve outcomes.

Hearing health, in particular, is critical: untreated hearing loss accelerates cognitive decline and contributes to dementia risk. Research shows that dementia and related conditions can significantly affect individuals with IDD, with chronological age and risk factors such as lifestyle and comorbidities playing a major role in disease progression. Conditions originating in childhood, like cerebral palsy or Down syndrome, can also influence the risk of dementia and late effects as people age.

For those with confirmed dementia, consistency is key. Supporters, including nurses, should maintain familiar staff and routines, use memory aids, and provide clear visual cues. Ongoing follow-up care is important to monitor changes and adjust interventions as needed. Dementia is a leading cause of mortality among older adults with IDD, highlighting the importance of early intervention and continuous support for these patients. Screening tools from the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) can also help identify changes early.

Supporting Mental Health and Depression

Distinguishing between temporary sadness and clinical depression is essential. Both Pam and Craig emphasized the need to assess physical and emotional health together. A sudden withdrawal, for example, could indicate anything from grief to untreated illness.

Therapy and medication may play a role, but so do trauma-informed supports: creating safe environments, building connection, and giving people meaningful choices in their daily lives.

Promoting Health Through Preventive Care

Preventive healthcare remains one of the greatest unmet needs for people with IDD.

Pam urged providers to ensure that aging adults receive routine screenings—such as mammograms, prostate exams, and colonoscopies—that are often overlooked in this population. It is essential to provide timely follow-up to ensure patients complete necessary preventive care and remain engaged in ongoing health management. Supporters must also navigate the risks of polypharmacy: once someone is on five or more medications, the chance of dangerous interactions rises significantly.

Advocates play a vital role in bridging the gap between medical professionals and people with IDD, supporting patients and helping to manage their healthcare needs. Staff who can “translate” complex medical language, track symptoms, and prepare questions for doctors help ensure people get the quality healthcare they deserve.

Ongoing efforts are needed to manage risk factors, late effects, and secondary disorders through continuous medical care and timely intervention, aligning preventive care with World Health Organization guidelines and research-based best practices. The safety of healthcare settings is paramount, and legal acts such as the Act on Guarantee of Right to Health and Access to Medical Services for People with Disabilities help ensure access to medical care for people with IDD.

Housing and Transitions

Affordable housing was another pressing issue discussed in the webinar. Pam explained that some people lose housing support after decades, particularly when HUD-backed arrangements expire. Families and providers must plan early for transitions, always seeking the least restrictive and most person-centered living arrangement possible.

When moves are necessary, familiarity matters. Keeping routines, personal items, and trusted staff in place can soften the disruption and preserve a sense of stability.

Coping with Loss

As people with IDD age, loss becomes a recurring reality—whether it is the passing of parents, peers, or longtime staff.

Friendship development programs and reminiscence activities can provide vital comfort and continuity. Equally important is giving people the opportunity to grieve openly, with the same compassion and validation anyone else would receive.

Takeaways for Supporters

The conversation closed with practical reminders for families, staff, and providers:

• Be proactive. Don’t wait for crises. Focus on prevention, screenings, and healthy routines.
• Support identity. Help people maintain meaningful roles and relationships, and encourage them to participate actively in their communities and decision-making.
• Build friendships. Encourage connections that protect against isolation.
• Advocate for healthcare. Ensure providers understand the unique needs of people with IDD.
• Meet people where they are. Individualized support makes the biggest difference.

Conclusion

Aging is a universal experience, but for people with IDD, it comes with added challenges, often compounded by limited resources and systemic barriers. Yet as Pam Merkle and Dr. Craig Escudé emphasized, with the right supports in place, people with IDD can age with dignity, health, and fulfillment.

Their message is clear: the best outcomes come from proactive, person-centered strategies that honor identity, strengthen community, and ensure access to quality healthcare.

For more resources, including practical guides and healthcare spending in IDD, visit IntellectAbility’s website or explore the full IDD Perspectives webinar series.

Prevention Saves Lives and Dollars: The Cost-Saving Power of HRST

By Aliah Farley

A Smarter Investment in Healthcare

Healthcare costs continue to rise, and for organizations supporting people with intellectual and developmental disabilities (IDD), finding ways to deliver excellent care while protecting resources is a constant challenge.

The Ohio Department of Developmental Disabilities (OH DODD)’s evaluation of the Health Risk Screening Tool (HRST®) shows that prevention is the answer. The HRST was developed by and is exclusive to IntellectAbility to help organizations assess health risks for people with IDD.

What is the HRST?

The HRST is the leading screening tool for intellectual and developmental disability (IDD) risk management and support. It is a HIPAA-compliant, web-based rating instrument developed to detect health destabilization in at-risk populations and ensure that proper care and support are provided at all times to avoid unnecessary suffering and death.

The HRST monitors for health risks associated with various intellectual, developmental, and physical disabilities, which specifically affect systems of the body and the person’s ability to engage in life. This provides all supporters with the information needed to respond appropriately.

By identifying risks early, the HRST allows teams to assess an individual’s ability to perform daily activities and monitor body health, enabling action before issues become emergencies. The HRST assigns risk levels based on established criteria.

The HRST provides valuable information that helps teams understand and learn about health risks. This can lead to significant benefits for both individuals and organizations. Early identification of health risks can also support eligibility for disability benefits.

What Ohio Found

Supporters eligible to participate in the evaluation made one thing clear: the HRST makes a real difference.

• 79% expected fewer ER visits.
• 69% expected fewer unnecessary medications.
• 77% expected overall cost savings.

To ensure ongoing monitoring and support, regular HRST assessments should be scheduled over time.

Organizations looking for similar positive outcomes can use the HRST to support their teams and improve care. Consistent use of the HRST at different times helps maintain health and prevent emergencies.

Every avoided hospitalization or fall isn’t just a financial win. It means someone’s life was made safer, healthier, and less traumatic.

From Reactive to Proactive Risk Reduction

Traditionally, healthcare systems have spent most of their resources reacting to crises. The HRST flips that model. As one of the essential tools developed for risk reduction, the HRST gives agencies clear, objective insights, enabling proactive planning that prevents emergencies before they happen. Continuous oversight of health risks is crucial for effective risk reduction and operational stability.

For providers and payers, this shift is powerful. It means the HRST enables a range of solutions and actions that organizations can implement to start proactive planning, including:

• More accurate, individualized health plans.
• Reduced waste on avoidable care.
• Better outcomes for people supported.
• A more sustainable system overall.
• Support for field teams in their on-site work to assess and address risks.

These changes help teams respond appropriately to health risks and achieve effective risk reduction. The HRST enables organizations to expand their services and better protect the people they support. It also supports the work of healthcare professionals in the field, helping them deliver practical, on-site solutions.

The Bottom Line

The Ohio evaluation confirms what we’ve long known: investing in prevention is both the ethical and financially sound choice, and aligns with our mission to provide quality care.

With the HRST, organizations don’t have to choose between quality care and cost savings. They can achieve both while enhancing their service offerings and demonstrating a commitment to serving people with IDD. It is tested and trusted to deliver reliable results.

To read the full report, click here.