American Association for Physician Leadership

Strategy and Innovation

Accountable Care Organizations for Patients With Intellectual and Developmental Disabilities Empower Physicians to Improve Care

Duane Schielke, MS | Sanjay Seth, MD | Vincent Siasoco, MD, MBA

December 8, 2018


Population health management for patients with intellectual and developmental disabilities (IDD) offers a unique healthcare improvement opportunity along with specific practice challenges. The New York City-based Alliance for Integrated Care of New York, LLC (AICNY) recognizes IDD patients as one of the most medically underserved and vulnerable populations. In 2014, the AICNY was approved by CMS as a Medicare Shared Savings Program Accountable Care Organization (ACO) with approximately 350 physicians and other healthcare professionals providing care for about 6000 Medicare beneficiaries, the majority of whom were patients with IDD who are dually eligible for Medicaid and Medicare.

Population Health Management for Patients with Intellectual and Developmental Disabilities

In 2014, a collaboration of Cerebral Palsy Associations of New York State (CP of NYS), New York Integrated Network (NYIN), and the Queens County Independent Practice Association (QCIPA) brought together a large group of practices to fulfill the CMS beneficiary count requirement of minimum 5000 Medicare fee-for-service beneficiaries for eligibility as a Medicare Shared Savings Program (MSSP) Accountable Care Organization (ACO). This blend in patient population created a captive case study between the patients with intellectual and developmental disabilities (IDD) and patients without IDD. Based on expanded information-sharing needs and knowing that Medicaid Managed Care would be implemented soon in New York, New York City-based Alliance for Integrated Care of New York, LLC (AICNY) set out to strengthen its population health management platform to support advanced value-based care and risk management strategies.

AICNY is a unique MSSP ACO due to its two distinct populations. One group consists of typical MSSP ACO beneficiaries who are elderly Medicare fee-for-service patients who receive primary care from an AICNY participant member practice associated with the QCIPA. The other group includes patients with IDD from seven diagnostic and treatment centers who are completely atypical MSSP ACO beneficiaries, dual eligible and not necessarily elderly.

From the perspective of an ACO, the challenge is that whereas a large quantity of benchmark data concerning elderly MSSP beneficiaries are available to draw upon for population health management purposes, benchmarks for patients with IDD are scarce at best. The few data available often are convoluted. On a population basis, what is known is the acknowledgement of unprecedented ageing to the point of comparable life expectancy and an unprecedented increase in the number of infants who survive premature birth with lasting disability and chronic health conditions. This means the matters relating to providing effective primary and specialty healthcare to people with IDD will be increasingly complex, not less so. At the same time, CMS and NYS Public Policy are developing value-based reimbursement for people with IDD with the aim of enabling individuals to both live and work in the most integrated settings possible and expand their access to healthcare services. AICNY provides the means to develop population health management strategies that target the special needs of patients with IDD.

In response, AICNY employed a population health management system to retrieve CMS Claim Line Feed files and securely store data and conduct analysis to identify risk, weigh service trends against evidence-based practices, and identify candidates for case management. The data show AICNY patients with IDD typically present with severe chronic health conditions that can limit their physical, cognitive, and emotional development. These chronic health conditions, which are present from birth, also may curtail the ability of patients with IDD to thrive in community-based settings. Compared with the national MSSP benchmarks, the group’s data reveal an extraordinarily high utilization of the following: emergency department (ED) visits; the number of related inpatient stays; and use of specialists and diagnostic procedures.

The question is: how do these data compare to benchmarks of patients with IDD? To our knowledge, no such standards exist. We are aware, however, that up to 70% of all ED visits involving a patient with IDD result in an inpatient stay of two days, on average.(1) The data indicate that the most prominent admitting diagnosis is septicemia (non-birth) unrelated to the reason for the current ED visit, likely derived from bloodwork—and essentially not helpful in determining the root cause of the patient’s health issue.

Population health management for patients with IDD offers a unique healthcare opportunity with specific practice challenges to overcome. These include organizing expenditures that support social determinants in a manner to be reimbursed (e.g., travel training to medical facilities, providing MetroCards).

The ACO started with a select group of organizations from a statewide network built to embrace an integrated, whole-person approach for care of patients with IDD. Provider participants include seven outpatient health centers covering the regions of Long Island, New York City, Hudson Valley, Central New York State, and Western New York State from Niagara to the Southern Tier. Collectively, AICNY IDD participant members represent a significant footprint across New York State, serving about 25,000 patients. Nearly 350 physicians and other healthcare professionals, including the 43 QCIPA care providers, deliver care to more than 5800 patients, of whom about 50% are dually eligible Medicaid and Medicare beneficiaries with IDD.

Formulating Goals for Value-Based Care

AICNY established the following objectives to guide the organization’s path toward value-based care:

  • Achieve optimal health for its patients and drive holistic, patient-centric care by giving physicians and providers access to comprehensive data.

  • Care for the needs of IDD patients using an integrated population health management platform that enables integration of medical care management between the medical providers and patients’ long-term care service providers.

  • Seamlessly capture and share relevant IDD patient data across all providers of record, such as routine and follow-up visits, prescription orders and refills, and longitudinal medical records—both within and outside the ACO network.

  • Share electronic, pre-service summaries with providers before IDD patient visits.

  • Create workflows to optimize the appropriate sharing of clinical information and implement practices that promote the integration of medical, mental health, rehabilitation, and dental services.

  • Meet quality data collection and reporting requirements.

Four Unique Challenges of Care for Persons with Intellectual and Developmental Disabilities

Four specific barriers had to be overcome to meet these objectives—patient communication, multiple electronic medical record (EMR) and electronic long-term care program administration systems, overuse of emergency services, and paper records from long-term care or group homes.

Patient Communication

The first barrier to be overcome by primary care physicians, specialists, and residential care managers is the inability of many patients with IDD to sufficiently articulate their chief complaint and symptoms. Providers also lacked access to documentation of patient histories, including such data as vital signs, physical and behavioral changes, and medication administration records, which were recorded only on paper in the group home setting or family home, making it difficult to diagnose and treat health concerns.

Multiple Electronic Medical Records and Electronic Record Systems

Examining the residential records showed that 600 patients with IDD served by CP of NYS had between 7000 and 8000 specialty medical appointments outside the AICNY network each year. This led to a series of logistic and patient satisfaction concerns, such as the following:

  • Encounters documented in different EMRs;

  • Primary care providers lacking visibility to the specialist’s assessment and plan;

  • Doctors unaware of recurring follow-up appointments scheduled with specialists;

  • Unnecessary visits, contributing to higher costs;

  • Transportation issues due to numerous medical appointments;

  • Physical and mental stress on patients following multiple encounters; and

  • Cost to residential providers for staff accompaniment to multiple appointments.

Emergency Services

Certain patients with multiple chronic conditions living in certified residences were transported for emergency care multiple times per month. AICNY leaders identified two contributing challenges: a group home protocol for after-hours triage that did not incorporate the patient’s primary care provider, and a cautious approach to ensure compliance with their certification by state regulatory agencies.

Paper Records

Finally, a significant number of patients with IDD live in long-term care facilities or independent residences aided by in-home support staff. Nurse case managers document the patients’ care in paper records, which are prone to damage, mishandling, and misinterpretation, and are grossly ineffective in coordinating cross-continuum care. All of the paper records from out-of-network providers are maintained in paper form in the residences. Family caregivers organize the paper records for patients living at home.

Taking Action to Deliver Value

CP of NYS initiated several projects that directly support AICNY’s mission and goals. CP of NYS is the majority owner of AICNY. CP of NYS administered a Balancing Incentive Program grant award used to improve services of Metro Community Health Centers, an AICNY member and integrate medical case management by the health center and the long-term care residential services provider. An award from the Nonprofit Infrastructure Capital Improvement Program is funding the installation of a telemedicine triage system in 105 residences housing more than 600 individuals with IDD that includes many MSSP beneficiaries.

AICNY tackled its fundamental care delivery challenges by implementing technology to support stronger collaboration. Collaboration requires information that can be acted upon. Using an integrated population health management platform, the organization now aggregates and analyzes EMR and claims data for IDD beneficiaries across all providers and service delivery settings. From there, risk stratification tools are used to identify high-need and high-cost patients who would most benefit from targeted care interventions. The collected data also satisfy physicians’ ACO-related quality data collection and reporting requirements.

As an approved MSSP provider, AICNY now also evaluates data for its entire population to help design and develop strategies addressing healthcare’s Triple Aim—cost, quality, and outcomes. With aggregated data, AICNY can transform how care is delivered to its patients with IDD—ensuring the right patients receive the right care, in the right place and at the right time. Technology also helps AICNY individualize care plans to better manage each patient’s unique combination of illnesses and preventive treatments.

Empowering Care Providers

AICNY armed its physicians and care managers with analytical tools and training on how to interpret ACO data in pursuit of three specific objectives:

  • To determine the best care management strategy for each patient;

  • To focus on patients with the highest resource utilization; and

  • To compare performance against pre-established quality standards to track care improvements.

The organization is already using ACO data and custom workflows to send patient-specific information to AICNY providers before encounters. Pre-service summaries are automatically populated with the most relevant documentation accessible for every provider’s visit with a patient with IDD.

Once data integration of the entire patient population is complete, AICNY will also develop workflows to transmit data to other private practices where physicians treat many of the same patients with IDD. The following case study shows how one location is already improving care for patients with IDD.

Case Study: Metro Community Health Centers

Metro Community Health Centers (Metro) is a Federally Qualified Health Center (FQHC) created by the CP of NYS with five locations in New York City. Vincent Siasoco, MD, MBA, one of the authors of this article, is the Chief Medical Officer and the Medical Director of AICNY.

For more than two decades, Dr. Siasoco has cared for people with IDD. From his college years coaching the Special Olympics and working part-time at group homes to becoming a Board-certified family physician, his passion is advocating for patients who are unable to care for themselves.

For Metro, Dr. Siasoco oversees clinical services provided by about 35 physicians and clinicians for more than 200 patients seen daily at five multispecialty FQHCs throughout New York City. Metro sees a diverse mix of patients, of whom 85% to 90% percent have IDD, associated with 20 different agencies.

Dr. Siasoco’s most challenging issue as a practitioner and an administrator is understanding a patient’s entire care profile. Care providers at Metro have access to patient data within an EMR. However, they did not have visibility to care delivered outside the health centers such as ED and inpatient visits, physician visits outside their community network, and pharmacy fulfillment activities. Greater access to patient information across all care settings became a common goal for Metro and AICNY.

As a proactive measure, Metro became the primary medical care provider for the IDD population, understanding that coordinating the medical needs of patients with IDD via one provider group at one location would improve care.

As part of AICNY, Metro has made impressive strides in information access and care coordination. Care providers now are able to view Medicare claims data from AICNY’s population health platform to see all episodic encounters that occur outside its centers. Physicians can explore antecedents of these events with healthcare guardians and intervene with examination and education recommendations—which is particularly important to help reduce emergency room visits.

The following example describes how Metro physicians use the data to improve the health of patients with IDDs.

Solving Specific Patient Problems

Although Metro has an after-hours on-call service, the decision to send patients to the ED is made by the individual group home’s nursing staff. And group homes housing AICNY beneficiaries operated by agencies other than CP of NYS have different triage systems. While the triage system works well for the group home, health center providers are not always aware of patients being transported to the ED and the reasons for sending them.

With access to claims data through AICNY’s population health platform, Metro physicians see which patients are transported to EDs and for what reasons. For example, the ACO’s data identified a trend in ED visits for urinary tract infections (UTIs)—a condition easily treated in an outpatient clinic. Armed with this retrospective information, Metro physicians took four important steps to reduce the number of ED visits for UTI:

  • They became more proactive in monitoring patients with UTI by group home;

  • They provided staff education on UTI prevention;

  • They built individualized care management plans and addressed barriers to care; and

  • They shared information with other Metro health centers to prevent ED visits.

Before the project began, the average cost of care for patients with IDD had been increasing at a rate of 9% to 13% per member per quarter, for four quarters.

AICNY first introduced care managers to meet with physicians to identify and review complex, high-cost cases. Through this simple awareness, providers were able to reduce unnecessary hospital encounters. The growth of per member per month (PMPM) costs slowed to an increase of just 7% to 10% for the IDD population over the next two quarters, while the combined population of the MSSP group experienced a decrease of 2% in PMPM costs.

Over the final quarter of 2017 and the first quarter of 2018, case managers initiated direct contact with patients, caregivers, and group home team members to close care gaps, provide education, and facilitate follow-up communication. As a result, PMPM costs for patients with IDD continued to decline, and there was a decline for the combined population in 2017. There was a total 2017 spend of $39,742,683. There was a total savings of $2,379,558, which is a 5.6% reduction below the benchmark resulting in a shared savings payment of $993,935 to AICNY. Data from 2018 show a trending forward of additional savings over 2017.

“The data help us achieve the Triple Aim’s three goals: improving the health of populations, enhancing the patient experience of care, and reducing costs,” said Dr. Siasoco. “Knowing exactly when and where our patients are receiving care outside our network empowers our physicians and staff to appropriately coordinate with those providers and gain critical information. Essentially, we can collect all the pieces needed to paint a holistic picture of each patient’s health and make knowledge-based decisions.”

Group Homes Join Accountable Care Organization Efforts

To that end, Dr. Siasoco is helping the AICNY beneficiaries’ group homes migrate from paper documentation to the population health platform as a part of the Integrated Health Network Project being implemented by CP of NYS under the direction of Duane Schielke. Residential nurses record care management entries into the platform, and paper documents are uploaded. More than 14,000 paper documents have been scanned, ID’d, and uploaded into the population health management platform. The incorporation of data elements into the platform will provide physicians with informed feedback on patient response to changes in treatment protocols, eventually preventing or minimizing complications and readmissions.

Digitizing care for patients with IDD is revolutionizing AICNY’s provision of health services. And the organization is not stopping there. AICNY is deploying the analytics framework to other agencies supporting patients residing in similar group home and health center settings, including long-term care facilities.

What’s Next

Currently, the analytics framework roll-out is under way at HeartShare Human Services, a nonprofit agency that provides residential, educational, family support, and vocational training services. Another grant from a private foundation has funded the addition of the residential programs operated by two additional organizations providing certified residential services to individuals with IDD to this initiative. If success occurs at other agencies providing long-term care residential services to Metro’s patients, the model can then be replicated across AICNY’s IDD participant members.

Telemedicine beyond triage offers many alternate ways to provide improved and less expensive services. ACOs that strive to gain visibility across all patients and providers within covered populations ensure more coordinated care delivery and efficient holistic care.


  1. Arthur Webb Group. Special populations present special opportunities for health system redesign: updated data on persons with developmental disabilities. White Paper. April 2017.

Duane Schielke, MS

Executive Vice President, Chief of Health Management Initiatives, Cerebral Palsy Associations of New York State, and Executive Director, Alliance of Integrated Care of New York, LLC, 330 West 34th Street, FL 15, New York, NY 10001; phone: 212.356-1204; e-mail:

Sanjay Seth, MD

Executive Vice President of HealthEC, Piscataway, New Jersey.

Vincent Siasoco, MD, MBA

Chief Medical Officer, Metro Community Health Centers, Inc., and Medical Director, Alliance of Integrated Care of New York, LLC, New York, New York.

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