Pennsylvania has a longstanding commitment to the notion that people with intellectual and developmental (I/DD) disability should live an "everyday life" that is largely indistinguishable from their peers without disability. This notion of an "everyday life" incorporates the expectation that individuals with intellectual disability would rely on the same medical services as everyone else in the community. They would have a primary care physician or nurse practitioner who includes them into a practice that serves all types of individuals and have access to specialists as needed. Because most individuals who have I/DD have relatively mild variants of the condition, the expectation that they rely on the existing medical system seems quite reasonable.

But it is not clear that a one size fits all model of health care really works for the entire population of people with I/DD. The overuse of emergency room visits and high healthcare utilization cost tells us something else. There is a portion of the population with I/DD who, in addition to the intellectual disability, face challenges from a variety of genetic anomalies. They tend to have complex medical issues.

Consider, for example, the association between heart disease and early onset dementia in persons who have Down syndrome or the early mortality experienced by persons with Rett Syndrome or Duchene's muscular dystrophy or weight-induced medical problems experienced by persons with Prader-Willi Syndrome. Medical treatment for these individuals demands something more. They require physicians and nurse practitioners with expertise not just in primary care, but also in the various disabling conditions that affect some individuals with I/DD.

There are barriers to the provision of such services. Expertise in dealing with people with disabilities is growing in the medical community, thanks to the inclusion in medical school curricula and residency programs of training in working with these patients. However, evidence-based studies demonstrate that the medical needs of persons with I/DD are greater than those of the general population, and of course, more expensive. Time is the crucial factor.  A usual primary care five to ten minute appointment does not work. These visits take closer to one hour. Herein lies the challenge.

Most people with I/DD have medical insurance through Medicaid. However, the fee schedule for Medicaid is so low that it discourages many physicians and nurse practitioners from participating. If we want primary care providers to treat people with significant disabilities, they must be compensated appropriately for the additional time that is needed to do their work according to acceptable professional standards.

To address this issue, Medicaid should develop an adequate rate for treating I/DD and other specialized populations that takes into account both the experience and time required. These are among the most vulnerable patients, and their needs should be fully met.


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