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Building a PCMH for the Developmentally Disabled

The state instructs its Medicaid managed care companies to help providers set up patient-centered medical homes for an especially vulnerable population.

New Jersey is looking to extend the concept of patient-centered medical homes to serve the developmentally disabled, which includes individuals with Down's syndrome and autism.

The coordinated care offered by a PCMH should be a natural asset for this vulnerable population, which is typically served by numerous professionals, from speech and physical therapists to psychiatrists and cardiologists.

Now the Arc of New Jersey and other organizations serving the developmentally disabled are looking to formalize their efforts at care coordination by getting recognized as PCMHs by national standards-setting bodies whose goal is improving quality and patient outcomes.

More than 43,000 of the state's developmentally disabled receive services from the Division of Developmental Disabilities in the state Department of Human Services. A significant amount of their medical care is funded by the state/federal Medicaid program, also under DHS.

The state has contracts with four managed care companies that deliver most Medicaid services, including services for the developmentally disabled. DHS has directed these managed care firms to develop pilot programs to help Medicaid providers become PCMHs. Some of these pilots will enroll Medicaid providers that serve the general population, and others will focus on providers that specialize in serving Medicaid's developmentally disabled clients.

A seminar to guide advocates for the developmentally disabled, healthcare providers, and state officials to implement a PCMH was convened last Friday by the Elizabeth M. Boggs Center on Developmental Disabilities of the UMDNJ Robert Wood Johnson Medical School.

The seminar heard from Dr. Tamsen Bassford of Tucson, Arizona, who three-and-a half years ago spearheaded the creation of a PCMH for adults with developmental disabilities. Her center is part of the University of Arizona Family Medicine Center and serves more than 80 patients.

Bassford said the PCMH is off to a good start: the physicians and other healthcare providers are working as a team, and there is a high level of patient satisfaction. "People want to be here, they are very loyal, so we are not losing patients to other practices," Bassford said.

In Arizona, only about 150 of the developmentally disabled live in state institutions; most live in the community, in group homes or apartments, or with their families. New Jersey has about 2,500 residents in state developmental centers, and is committed to deinstitutionalizing as many of them as possible by providing increased community-based services. The PCMH could play a major role in supporting that mission, Bassford said. "When [the developmentally disabled] live in the community, like everyone else in the community, they have to interface with services that are spread out geographically, and that are provided by different [healthcare] systems. So the 'virtual system' has to be better -- the systems of communication and coordination have to be stronger when the developmentally disabled are living in the community."

Part of the challenge of establishing a Medicaid PCMH is to restructure payment systems so that the medical home can afford to provide the additional services, such as care coordination and increased access to preventive care, that lead to better patient care. As part of their pilots, the four Medicaid managed care companies are working out the details of how to revamp compensation so the PCMH can deliver a higher level of service.

PCMH pilots conducted around the country and in New Jersey in recent years and have shown that the upfront costs of the PCMH can be offset by cost savings over time, as patient health improves through better screenings and preventive medicine, and the need for emergency room visits and inpatient hospital care declines.

Kristen Creed, director of health services for Arc of Monmouth, said her organization has been functioning like a medical home for more than 20 years, and is now talking with Amerigroup, a Medicaid managed care provider, about how it can move toward achieving formal recognition as a PCMH.

"We already provide patient-centered care," she said. "We have psychiatric and medical care under one roof, so we really have been able to integrate physical and behavioral health."

Dr. Rick Cohen, medical director of Amerigroup New Jersey, said he is talking to the Arc of Monmouth and the Arc of Mercer about how to set them on a course for formal PCMH recognition from the national standards organization, the National Committee for Quality Assurance. These discussions include having Amerigroup provide additional reimbursement to cover the upfront costs of the PCMH, possibly as a per-patient, per-month fee. Amerigroup will track quality indicators to assess the impact of the PCMH, such as emergency room use, impatient hospital utilization, child immunization rates, and best practices in diabetes care. "We are very interested in working with the Arcs," Cohen said. "I think they do a great job coordinating their care as it is." Because they serve developmentally disabled patients who may not easily manage their own healthcare or advocate for their own needs, "The Arcs have a much greater interest in care coordination than your average practices" and may already be doing much of what NCQA requires for formal recognition as a PCMH, Cohen said.

Anne Brady is director of the Arc/Mercer Healthcare center, which opened in Trenton in June 2011 and now has a patient enrollment of 175 that by mid-2013 could grow to as many as 450. The center is open to anyone in the greater Mercer area with a developmental disability, whether or not they are clients. Arc Mercer provides a full range of services to individuals with developmental disabilities, many of whom live independently, in group homes or with their families.

Brady, who oversaw the center's launch, said it provides both primary medical care and behavioral health services, and was designed with an eye toward achieving PCMH designation. The center's physicians see patients at the facility and also go out into the community to see them. She said the center is the sort of community-based program "that keeps developmentally disabled people in the community and receiving care over their life span."

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