NADD U.S. Policy Update (from the NADD Bulletin Volume IX Number 3)

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Provision and Reimbursement of Health Care for People with Developmental Disabilities

Leslie Rubin MD

US Public Policy Update

Traditional health care reimbursement is based on the model of keeping the wheels of industry turning and was designed for generally fit and healthy workers who for the most part have acute care needs in order to return to the workforce. While this model is effective for the population described, it does not work well for people with chronic conditions especially if there are implications on education, employment and productivity, such as present for people with developmental disabilities. Although much advocacy over the decades has resulted in some improvements in the system, the health care financial crisis we are facing and the managed care systems we see today seriously cut into what is needed to provide quality health care for people with developmental disabilities and contributing to health care disparities.

The reality of health care needs in society and of its citizens requires a philosophical approach that has been articulated in the World Health Organization definition of health which states that health is not merely freedom from disease, but the promotion of physical emotional and social well-being. This clearly does not fit into the existing health care reimbursement model.

Chronic conditions not only affect body systems but influence life-style and require often dramatic changes in habits and practices that affect every-day life; a striking example of which can be found in the diagnosis and management of diabetes. In the acute presentation of a diabetic crisis, management requires sound medical knowledge and appropriate interventions including in some situations the need for intensive medical interventions to stabilize the individual. According to Dr. Joseph Wolfsdorf of the Children’s Hospital in Boston, the acute management needs to be followed by a thoughtful, thorough and ongoing education and training of patients and family or other care givers. As Dr. Wolfsdorf points out, as soon as the metabolic disorder is corrected, it is imperative to educate the patient and the family or other caregivers on the disorder, how it exerts its effects on the body and most importantly how to control the disorder and prevent medical crises and complications.

Not only are the medical complications that can arise with inadequate management costly to the individual in terms of health, activity, happiness and longevity, but also on the costs on the health care delivery system as measured by emergency room visits, hospital days and specialized services procedures. The goal is to make sure patients who have diabetes stay well and do well and stay out of the hospital. In order to accomplish this, the critical need for ongoing education for the patient, the family and all those who come into contact with the patient. There is also a need for ongoing education and the availability and accessibility of trained staff to provide this service. Wolfsdorf contends that investment in education early on and on a continuous basis is critical to management and long term health and outcome, yet is not reimbursed.

This scenario is all the more relevant for individuals who have developmental disabilities.

Individuals with developmental disabilities are more likely to have a complex set of physical and mental health care needs, are more likely to have a number of different health care providers and to be on a number of different medications. In addition, they are less likely to have a recall of their health care experiences, and treatment providers are more likely to have someone else, a family member or a paid service provider serve as informants on behalf of the individual in treatment. Thus, health care providers are required to spend a longer period of time gathering information, examining the patient, formulating the management or treatment plan, and a longer time in communicating this to the individuals with disabilities, the family and/or the direct care providers, nurses or health care coordinators.

The financial reality is that the reimbursement for the services provided in this scenario is very likely to be woefully inadequate for the time and effort of the physician or health care provider because it does not fit the acute care reimbursement model and because the health care insurance that individuals with intellectual disabilities have is likely to be of public funds through Medicaid or Medicare the reimbursement with be even lower.

The financial disincentives just described likely contributes to a dearth of available clinicians.

To further complicate and compromise the health care of individuals with intellectual disabilities and behavioral health care needs is the reality that there are few trained specialists in the provision of health care for this specialized population.

As a society we need to address the needs of our vulnerable populations and begin to look at a comprehensive approach to remedying the situation through:


All of this takes resources and a commitment on the part of our health care delivery system. In order to assure effective health care for individuals with developmental disabilities we need to provide training for health care providers on the medical, mental health and social issues that inevitably arise for people with disabilities and their families. In addition, a more reasonable compensation strategy will inevitably lead to improved health in this population and reduce the current level of health care disparities.


It is incumbent upon us to work together to help to change the situation and the system because it is ultimately important to all of us that all citizens in our society receive good quality health care.



Botero D, Wolfsdorf JI., Diabetes mellitus in children and adolescents. Arch Med Res. 2005 May-Jun;36(3):281-90.

Agus MS, Wolfsdorf JI, Diabetic ketoacidosis in children. Pediatr Clin North Am. 2005 Aug;52(4):1147-63, ix.

I. Leslie Rubin, and Allen C. Crocker

Medical Care for Children and Adults with Developmental Disabilities, 2nd Edition

Baltimore, Paul Brookes, 2006


Leslie Rubin MD

President, Institute for the Study of Disadvantage and Disability, Atlanta, GA

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The “U.S. Public Policy Update” is an ongoing column in the NADD Bulletin. We welcome your comments, as well as, submissions for this column. To learn more or to contribute to this column, you may contact Joan Beasley, chairperson of the U.S. Public Policy Committee, at