IEC’s Theory of Change

Why focus on people with intellectual and developmental disabilities (IDD)?

This is an issue of health equity and healthcare quality. People with IDD tend to have poorer health overall than the general population: high rates of chronic conditions (e.g., diabetes, cardiovascular disease, obesity) and some of the highest rates of COVID death (triple that of the general population) and maternal morbidity/mortality (5.7 times the general population).

Autistic people die at a rate 10 times higher than the general population due to preventable accidents, suicide, and medical complications. Suicide risk is three times higher in those with intellectual disability and six to ten times higher in those with autism. People with intellectual disability die two years younger than the general population.

These health disparities are even more pronounced for the relatively high proportion (30%) of people with IDD who are Black, brown, or low-income.

Who is included in the IDD population?

People with IDD represent a large and growing population: 3 to 5% of the US population.

The IDD population includes people living with common conditions like autism, cerebral palsy, fetal alcohol syndrome, Down Syndrome, intellectual disability (low IQ), spina bifida, attention deficit hyperactivity disorder, and with rare conditions like Williams Syndrome, Fragile X, or Rhett Syndrome.

Conditions can overlap such as when a person with autism or Down Syndrome also has intellectual disability.

Why is IDD care often not equitable and high-quality?

People with IDD experience late diagnoses and gaps in care and support, leading to preventable crises and health outcomes like early death. One reason is that many clinicians have outdated ideas and knowledge about people with IDD and don’t feel confident or prepared to care for them.

Coverage also has a lot to do with it. While most people with IDD have some sort of health insurance, health plans, insurance companies, government, and medical organizations don’t “see” people with IDD in their data. Common diagnoses for IDD conditions appear in insurance claims or medical charts at a fraction of the prevalence observed in surveys. This makes it more difficult to understand and meet their needs, and results in complex, preventable, and expensive cases.

The total annual cost for IDD care in the United States is $350 billion.

What additional challenges do Black and Brown people with IDD face?

Health disparities and poor outcomes are even worse for the 30 percent of people with IDD who are Black, Brown, or low-income.

African American IDD children face disparities due to delayed diagnosis and access to services:

African American children are often diagnosed years after the onset of symptoms, and in some cases remain undiagnosed well into their elementary school years Therefore, African American children are not as likely to receive and benefit from the early intervention services that many of their European American peers with ASD benefit from as toddlers (Maenner et al. 2020; Mandell et al., 2009).

Autistic people who are Black or Hispanic are twice as likely to report poor or fair mental and physical health as autistic people who are white.

Black and Hispanic autistic people also experience higher rates of diabetes and other chronic medical conditions than white autistic people.

Don’t most people with IDD see specialists who are trained to understand and meet their needs?

Unfortunately, no. Most people with IDD cannot access IDD specialists and need to receive competent, culturally appropriate care for all conditions, in their communities.

People with intellectual and developmental disabilities receive care from a wide range of providers depending on their insurance, location, and private resources. Providers who specialize in caring for these populations include some federally supported university centers and community-based clinics (see examples in Utah and in California) with multidisciplinary care teams that can tailor care to the needs of individual patients and families.

Often, these IDD providers serve a high concentration of patients on Medicaid or disability insurance through Medicare, and can hire difficult-to-access specialists like neuropsychiatrists/psychologists. But fewer than 10% of people with IDD qualify for Medicaid or Medicare before they are elderly and only 14% of families with children with special health care needs report receiving care in a well-functioning system.

The vast majority of the neurodiverse population must access healthcare through regular medical, dental, and other clinical practices, where clinicians are not as well prepared.

Can non-IDD specialists provide high-quality care for people with IDD?

While general clinicians may not be able to replicate the sophisticated care at specialized sites, they can learn to screen for IDD, use best practices for communicating with neurodiverse patients and families, address common clinical issues, and know when and how to refer patients for social supports.

They can achieve these competencies in only a few hours to a few days.

The Surgeon General issued a call to action on bettering the health of people with disabilities, including improving clinical training.

How can stronger connections be created between clinical and community care resources?

Healthcare cannot solve every problem that patients and families with IDD confront. Ensuring that people with IDD can thrive also requires strong and well-coordinated connection to community-based supportive services.

As the World Health Organization, the Centers for Disease Control and Prevention, and major insurers all recognize, factors like employment, housing, social connections, and safety collectively are even stronger predictors of patient outcomes than medical care.

Clinicians can proactively connect patients to social service agencies and programs. IEC will build tools to help clinicians understand the importance of such supports, access information on social service programs and, working through insurers, we will promote incentives for clinicians to coordinate with other service sectors.

What is “Neurodiverse Friendly” care and why is it needed?

Patients and families need a healthcare quarterback to guide care and coordinate across different clinicians and care sites, through sharing information and making joint care decisions based on agreed upon priorities.

Setting clear expectations on the roles and responsibilities for different clinicians can make referrals and co-management of care for a patient more predictable, efficient, and effective.

IEC will develop guidelines for care coordination agreements between different providers, as part of a set of standards for a Neurodiverse Friendly “health neighborhood” – the virtual team of clinicians across different sites that care for people with IDD.

How can insurance promote and support Neurodiverse Friendly care?

Health insurance should be Neurodiverse Friendly. But many insurers currently find it challenging to find the IDD population in the data they typically use, because clinicians don’t consistently record these diagnoses.

Private insurers, Medicare, and Medicaid can all promote care that prevents expensive complications like the need for hospitalization, or bad outcomes like suicide or worsening chronic illnesses. For example, they can pay clinicians to build care teams with multidisciplinary skills (medical, social work, behavioral coaching) and coordinate care. Over the past decade, insurers have built many such programs (often referred to as “value-based care”). (See examples in public and private insurance)

Insurers also have many tools they can deploy to improve care in focused areas. In addition to payment strategies, insurers can offer patients direct support, such as help resolving paperwork, reminders, coaching on how to get specific services, and coordination to help patients transition across different care sites. Insurers can also strategically design benefits such as copays and deductibles and can share information to steer patients to high-performing providers.

Better data on the IDD population will help develop a business case for better investment and reimbursement by healthcare purchasers and insurers. The IEC team has extensive experience analyzing such business cases and designing payment strategies and will form partnerships with large public and private insurers to generate better information on patterns of care and outcomes for the IDD population.

How can employers and other healthcare insurance purchasers promote Neurodiverse Friendly care?

Employers, Medicare, and Medicaid are the key entities that pay for healthcare. When an issue becomes a priority for these groups, insurers respond with better programs. For example, healthcare purchasers have yielded over time to demands for better programs in maternity care, behavioral health, and end-of-life care.

Employers who fund private insurance will benefit from understanding quantitatively whether, and how, larger or different types of investment Neurodiverse Friendly healthcare can increase productivity and better support their employees. This is true whether the employees are family caregivers of people with IDD or are themselves people living with IDD.

Why are new specialties in developmental medicine needed?

Developmental medicine already exists as a specialty in pediatric care, but not in adult care. Having focused training for clinicians to develop deep expertise in the adult care of people with IDD is essential to ensuring care for patients with the most complex needs.

As children with IDD transition to adulthood and age, their clinical needs change. They acquire common medical conditions like heart disease or diabetes, but they experience some challenges like sleep disorders, gastrointestinal disorders, anxiety, depression, or more commonly than other people.

IEC is collaborating with medical and nursing societies and our disability partners to leverage curricula that has already been developed through continuing education credits and conferences. And encourage proven mechanisms such as peer-to-peer support and collaborative learning.

Why are new certifications needed?

Requirements in certification (such as by medical or nursing boards) or credentialing programs (such as for state licensure) signal the expectation that all clinicians become competent in this area.

Why is measuring clinician performance important?

We know from experience in other areas of healthcare that we can improve care and save money when we make data on clinicians’ performance public; encourage insurers to steer patients to high-performing providers; and reward providers for good outcomes. (See examples for Medicare/Medicaid eligible populations, general healthcare organizations, and private insurance programs).