Philip B. May Jr. MD

Multiple socio-political forces, which matured in the 1960's, led to a reduction of significant physician input regarding which services would be provided to children and adults with chronic neuro-developmental disorders. A new emphasis on educational, vocational, social, and residential community supports created exciting opportunities for many people with uncomplicated milder disabilities. Emboldened by early success, policy makers proceeded with an aggressive total de-institutionalization agenda which, while well-intentioned, naively failed to recognize the medical complexities of some individuals. In addition, only superficial attempts to access "mainstream" medical care were made for people who lived in both institutional and community settings. Policy is now being reconsidered in some States in view of undesireable outcomes which have occurred in both "institutional" and "community" settings. There now appears to be an awakening appreciation of physical health factors which affect people with severe disabilities and a growing interest in better understanding and treatment of medical conditions which are frequently encountered in people with complex conditions or who are medically fragile. Hopefully this new spirit of inquiry, born of the pain of recent and past mistakes, will serve as an impetus towards providing better health services for people who are medically fragile or complex and developmentally disabled, regardless of where they live. It is suggested that these improved health services (which are needed in both community and institutional settings) can be developed by the creation of partnerships between traditional non-medical service providers, community-based physicians, and Schools of Medicine, where research is generated and physician training occurs. 

In the early 1900’s the success of institutions in providing a safe and humane haven for people with mental retardation led to severe overcrowding and deterioration of conditions. From the beginning most physician superintendents of institutions recognized the need for additional resources, including educational, vocational, and recreational programs; however, state legislators and the citizens who elected them, saw little need to provide the necessary funding. Services remained primarily custodial, with provision of basic residential and medical needs, until the initiatives of President John F. Kennedy in 1961. President Kennedy assembled a panel of advisors from numerous diverse fields such as special education, social work, psychology, and medicine, who made recommendations which were eventually translated into the Intermediate Care Facility for the Mentally Retarded (ICF/MR) program of 1971. Under the ICF/MR program States were then able to access matching federal funds by conversion of their existing institutions for the mentally retarded to" ICF/MR" facilities. This conversion required that services be directed by an “interdisciplinary team” with a new emphasis on "training" in order to achieve behaviors which would make the resident as independent as possible.Under this new “Habilitation Model” physician services in institutions were redefined to focus primarily on certification issues and legal requirements rather than implementation of innovations in health service delivery. Under the Habilitation paradigm, institutions were dramatically downsized as thousands of people with mild and moderate disabilities moved to community settings.

More recently, a “grass-roots” movement of people with disabilities (but none with severe mental retardation) has challenged the proponents of the Habilitation model by promotion of a new model, the “Individual Supports” model. Under this new model, people with disabilities themselves (in partnership with various commercial service supply agencies) would determine which services and supports they need. These services and supports would include residential , vocational, recreational, transportational, healthservice, and other types. If health services are needed, that would be determined by the person with the disability, not a professional. These intelligent, articulate people with disabilities purport to speak for all people with developmental disabilities, but this point of view has been challenged by many, especially parents of people with severe mental retardation.

It is ironic that the policies of 25-35 years ago which excluded physicians from significant policy-making and administrative roles, have inadvertantly contributed to difficulties "mainstreaming" (de-institutionalizing) people with severe developmental disabilities and associated complex health/behavioral disorders. Previous studies have considered "deficiency of medical knowledge" as a factor in failure to mainstream medical care (e.g. the ARC Mainstreaming Medical Care Project, 1989; Rutgers study, 1990; DDD Task Force, 1992). Academic physicians who perform clinical research have not had access to patients with developmental disabilities and have not therefore had the opportunity to become familiar with those complex clinical problems which frequently occur in this population. In addition, developmental center physicians have historically neither been encourged nor offered incentives to perform clinical investigation related to those clinical problems known to occur frequently in their patients with severe developmental disabilities.

In fact the institutional (developmental center) staff physician is hired primarily to fulfill the requirements for ICF/MR certification. It is only essential therefore that he/she have a valid medical license. No special training is required; a pathologist might be just as acceptable as a neurologist. Many physicians who take jobs in Developmental Centers are semi-retired or seek a life style that allows them to pursue interests other than medicine. Above all else, developmental center physicians are expected to comply with administrative policies. Since developmental center staff physicians work in a non-medical system, they are therefore isolated from their professional colleagues.Under the Habilitation model, States provide no incentives for developmental center staff physician excellence, and in fact, since physicians never make policy, would have difficulty promoting physician excellence even if they so desired.

However, developmental center staff physicians, after a period of several years, acquire an invaluable experience and “feel” for evaluation and management of the frequently occuring medical conditions (FOMC’s) encountered in the severely developmentally disabled. Developmental center staff physicians may not always know what to do, but they certainly understand the areas where “research” is needed, and are increasingly referring difficult cases to specialty physicians located in Medical Schools or elsewhere in the community. However, until relatively recently, the Medical School based Academic physician had virtually no access to adult developmentally disabled people. This is unfortunate when one considers the remarkable advances in medical knowledge and technology which have occurred during the past 25 years, knowledge which might lead to better understanding and service for adults with neuro-developmental disabilities and complex health problems. Many academic physicians are therefore bewildered by the health problems of mentally retarded people with severe complex disabilities and will acknowledge that medical data necessary for optimal treatment of the “frequently occurring medical conditions” (FOMC's-see below) is lacking.

EVALUATION AND MANAGEMENT OF FREQUENTLY OCCURRING MEDICAL CONDITIONS (FOMC's) ENCOUNTERED IN ADULT INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES : People with "developmental disabilities" are subject to the same medical disorders that one encounters in patients without developmental disabilities. It is anticipated that, in general, the same high medical standards that apply to the non-disabled population are enjoyed by the disabled population as well. However, health care professionals who care predominantly for adults with "developmental onset chronic brain disorders" (i.e. neuro-developmental disabilities) have recognized that certain medical conditions frequently occur in that population (3). In addition, because there exists a defiency of medical literature to guide the medical practitioner (4), well-defined guidelines which direct the care of these frequently occuring medical conditions (FOMC's) are lacking.

Examples discussed below include: 1) establishment of an etiologic diagnosis, 2) seizures, 3) neuromotor disorders, 4) severe abnormal behavior, 5) recurrent pneumonia, 6) gastrointestinal disorders, 7) osteoporosis, and 8) hepatitis B carrier state .

1. Etiologic Diagnosis: "Developmental onset" chronic brain dysfunction is a devastating condition from personal, familial, societal, and economic perspectives, yet the precise etiology is often unknown. However, knowledge of the exact diagnosis can at times lead to appropriate therapy which can markedly improve quality of life (5). In addition, diagnostic evaluation can provide important genetics counseling information which can reassure anxious family members. The primary-care physician should attempt to establish a precise etiology by first obtaining careful medical history. This may require chart review as well as interviews with family members. If prenatal or perinatal pathology is clearly documented (e.g. rubella infection, very low birth weight, severe problems during delivery), the diagnosis can be established by history alone. However, further evaluation would be indicated if there were no evidence for early abnormal developmental problems, but subsequent failure to attain normal developmental milestones. If deterioration occurred after a period of normal development, then further evaluation would also be indicated. Physical examination should attempt to reveal "syndromic" features (e.g. tuberous sclerosis, neurofibromatosis, William's Syndrome, Prader-Willi Syndrome). If the history and physical examination do not suggest a diagnosis, then certain laboratory tests should be ordered. Brain MRI can reveal a demyelinating process, mass lesions , obstruction to CSF flow, and migrational disorders.Chromosome studies can reveal aneuploidies, deletions, and translocations. DNA analysis can reveal "triplet-repeat" disorders, and biochemical tests can reveal metabolic disorders. Biochemical screening tests for metabolic disorders include: 24 hour urine for amino acids, serum quantitative amino acids, spot urine for organic acids, urine mucopolysaccharides , and plasma amnonia level. If these screening tests are all normal, referral to a medical neurogeneticist should be made. A medical report detailing the history, physical examination and laboratory results should accompany the referral to the medical neurogeneticist.

2. Seizures: Many patients with developmental onset chronic brain disorders have seizures. These seizures are often incompletely or inaccurately described, and may have multiple clinical presentations (6). At times true seizures may be confused with abnormal involuntary movements (see below). The primary-care physician should provide a careful written description of the clinical presentation of the seizure (or seizures). Special attention should be made to the initial manifestation (i.e. how it starts). A video recording of the seizure(s) should be obtained to assist in the neurological description. A 24-hour ambulatory EEG should be obtained whenever possible. Brain MRI should be obtained to rule out mass lesions, mesial temporal sclerosis, or other focal abnormalities. Drug therapy should be monitored by "longitudinal graphic analysis" (*). Epileptology consultation should be obtained in cases of "refractory" seizures (as defined by greater than 25 seizures/year in spite of trials of Tegretol, Depakote, Dilantin, Phenobarbital, singly or in combination).

(*) "Longitudinal graphic/video analysis" refers to an objective and systematic graphic and/or video correlation of a targeted behavior or symptom with a "treatment" intervention, which is designed to determine "efficacy" of the intervention.

3. Neuromotor Disorders:

a) "muscle rigidity": Muscle rigidity in the developmentally disabled might be caused by damage to either: 1) pyramidal (spastic), or 2) extra-pyramidal (cogwheel) systems. Pyramidal (spastic) type rigidity is by far the most common type encountered in patients with developmental onset chronic brain disorders. If untreated, pyramidal type rigidity leads to impaired mobility by causing ataxic movement and contractures. Impaired mobility is highly correlated with increased morbidity and mortality (7). Pressure sores, gastroesophageal reflux, constipation, and aspiration pleumonia are often associated with impaired mobility secondary to muscle rigidity. Before treatment is implemented, baseline video-analysis and goniometric (joint angle) measurements should be obtained. Treatment may include medical, e.g. Baclofen, Valium, Botox (8) or surgical, e.g. selective dorsal rhizotomy or percutaneous tendon release, modalities. Recent evidence suggests intra-thecal Baclofen (9) may be highly efficacous treatment of spastic rigidity for some individuals. Regardless of the modalities chosen, efficacy should be documented by careful follow-up periodic video-analysis and goniometric measurements.

b) "dyskinesia "(abnormal involuntary movements): Abnormal involuntary movements are frequently seen in patients with developmental onset chronic brain disorders. They may appear as dystonia, choreoathetosis, myoclonus, tremor, or combinations of these (10). Stereotypies and tics may be closely related to involuntary movements (some call these "unvoluntary"). Treatment depends on an accurate diagnosis. MRI of the brain should be considered in cases of involuntary movement to rule out disease of the basal ganglia or cerebellum . Video-analysis of the dyskinesia should precede treatment. In addition, treatment efficacy should be documented by follow-up video analysis(*).

4. Severe Abnormal Behavior: Severe abnormal behavior may be symptomatic of: 1) a medical problem, eg. infection, GI disorder, drug toxicity, epilepsy, 2) a psychiatric disorder, eg. schizophrenia, OCD, 3) "environmental" toxicity, e.g. too much "stimulation", or 4) a "personality" disorder, e.g. conduct disorder, manipulation. Accurate diagnosis requires coordinated interdisciplinary video and graphic analysis. Treatment efficacy should be documented by periodic follow-up longitudinal video-graphic studies (*). The primary care physician, in collaboration with the psychiarist and psychologist, should be responsible for the formulation of a "neurobehavioral" analysis (working hypothesis) before "treatment" is started. In addition, the physician and psychologist should be responsible for treatment efficacy documentation (11). Psychoactive drugs should never be used as a "chemical retraint" (i.e. without neurobehavioral rationale). When associated with severe abnormal behavior, there is evidence that ventricular enlargement of the frontal lobes may predict a beneficial response to neuroleptic medication (12); therefore, a brain MRI scan might be considered in cases of severe refractory abnormal behaviors.

(*) "Longitudinal graphic/video analysis" refers to an objective and systematic graphic and/or video correlation of a targeted behavior or symptom with a "treatment" intervention, which is designed to determine "efficacy" of the intervention.

5. Recurrent Pneumonia (three times in a five year period): Recurrent pneumonia in developmentally disabled individuals can be caused by: 1) aspiration, 2) ineffective airway clearance secondary to accessory muscle malfunction, or 3) immune deficiency secondary to drug toxicity. Aspiration as cause of pneumonia (13), while perhaps the most common etiology, may be over-diagnosed. If aspiration from oropharyngeal dysfunction is suspected, a swallowing study (preferably videofluoroscopic) should be performed. Feeding gastrostomy would be indicated if feeding becomes extremely difficult for the patient, if there is significant weight loss, or if clinical aspiration occurs. If recurrent pneumonia is caused by gastroesophageal reflux, as documented by esophagogastroduodenoscopy (EGD) and or videofluoroscopy, then medical (prokinetic agents, acid blockers) and/or surgical (fundoplication) treatments would be indicated.

6.Gastointestinal Disorders:

a.Recurrent gastrointestinal bleeding: the most common causes of gastrointestinal bleeding in the developmentally disabled population are esophagitis and gastritis.

1) Esophagitis is usually secondary to gastroesophageal reflux (14) which in turn is secondary to either gastroesophageal dyskinesia (dyskinetic GERD), or rumination (self-induced GERD). Barrett's esophagus (a premalignant lesion) can complicate long standing esophagitis (15). If Barrett's esophagus is demonstrated, then careful surveillance is indicated. "Dyskinetic" GERD can be treated with prokinetic agents, acid blockers, or fundoplication. "Self-induced" GERD (rumination) can be treated by behavior modification and medically as well (especially acid blockers). Efficacy of treatment and surveillance of Barrett's esophagus should be documented by periodic endoscopy.

2) Gastritis can be caused by "duodeno-gastric reflux" (DGR)(16), i.e. reflux of bile salts and pancreatic enzymes into the stomach, or by Helicobacter pylori infection (17). DGR can be diagnosed by isotopic gastric emptying studies or bile salt determination in gastric aspirate, while H. pylori is diagnosed by endoscopic biopsy with CLO test and histopathological examination. DGR can be treated with prokinetic agents (and possibly cholestyramine) while H. pylori is treated with antibiotics. Efficacy of treatment should be documented by repeat endoscopy and/or serum markers, since H. pylori infection may recur.

b.GI Motility Disorders: Chronic brain injury is often associated with abnormal motility of oropharynx (18), esophagus, stomach, and intestines (19). Oropharyngeal dysfunction and esophageal spasm may lead to chronic pulmonary aspiration as previously discussed . Gastroesophageal reflux and duodeno-gastric reflux( DGR) are associated with G.I. bleeding (as discussed above) and also with pulmonary aspiration.

c.Chronic constipation can be caused by: 1)Medication, such as calcium channel blockers and anticholinergics (e.g. neuroleptics), 2) immobility (e.g. from contractures), and 3) the underlying brain disorder. Constipation can lead to fecal impaction and volvulus and may also indirectly contribute to an increased risk of pulmonary aspiration. The first steps in treatment of constipation are directed towards improving "mobility" by treating neuromotor disorders (eg. spastic rigidity and dyskinesia) and promoting exercise, avoidance of anticholinergic drugs if possible, and addition of fiber and fluid to the diet. If these measures are tried and are ineffective, the addition of oral lactulose (or sorbitol), followed by laxatives, and/or enemas would be indicated. The prokinetic agent Cisapride (Propulsid) may also be effective in refractory cases.

7. Osteoporosis: Immobility, phenytoin, amenorrhea in women (20), and hypogonadism in men are risk factors for osteoporosis. Individuals who demonstrate these risk factors should have baseline bone density studies and urine pyridinoline cross-links determination. Regardless of treatment chosen (eg. Didronel, Fosamax, Prempro, Calcimar) efficacy of treatment should be documented by yearly urine cross-links assessment and bone densitometric studies every three years. Calcium and vitamin D supplements alone are probably inadequate treatment for the osteoporosis encountered in patients with developmental disabilities.

8. Hepatitis B Carrier State: The Hepatitis B carrier state is more common in developmentally disabled individuals, especially if there has been a history of institutionalization or if the individual has Down Syndrome (21). Risk of infectivity and presence of hepatitis should be ascertained by determination of Hepatitis B viral DNA, e antigen, and hepatic enzymes in all cases of Hepatitis B surface antigen carrier state. Treatment (eg. with Intron A and/or Epivir) should be considered in those patients who demonstrate active viral proliferation and/or hepatitis. Those patients who continue to be "active" (positive viral DNA, e antigen, elevated SGPT) should undergo periodic abdominal sonograms and/or alpha-fetoprotein to rule out hepatic carcinoma.

In conclusion, certain medical conditions are known to occur more frequently in adults with neurodevelopmental disabilities. The conditions described above (as well as others, such as visual and auditory problems) create a level of complexity to the optimal health management of people with disabilities which is not understood by most practitioners of medicine. As a result, health services become fragmented. A given individual for example, may have seizures managed by one physician, gastrointestinal problems by another, and abnormal destructive behaviors by a third. Poor communication among physicians often results in the use of multiple medications with undesireable drug-drug interactions and chronic medication toxicities. Fragmentation of health services provided to people with developmental disabilities has been one consequence of lack of general medical knowledge. Primary care physicians who provide services to adults with complex disabilities are in a position to reverse this condition by the practice of "academic primary medicine" as described below.

THE PRACTICE OF “ACADEMIC PRIMARY MEDICINE” AS A MEANS TO IMPROVE HEALTH SERVICES IN BOTH INSTITUTIONS AND THE COMMUNITY: Discussion of the concept and philosophy: The practice of medicine might be conceptualized as consisting of three distinct functional perspectives or points-of-view. The first, "primary" medicine, refers to prevention and treatment of common ailments and illnesses that are uncomplicated and do not present a significant diagnostic or therapeutic challenge to the well-trained practitioner. These illnesses may be serious (e.g., heart attack) or not (e.g., viral upper respiratory illness) but they are easily managed by the competent "primary care" physician. If the illness develops an unusual complication, e.g., complex arrhythmia with heart attack, or severe asthmatic bronchitis complicating viral URI, "specialty" medicine may be required. Specialty health care therefore requires the services of a "specialist" (e.g., cardiologist or pulmonologist).

The intent of academic medicine is to expand the general medical knowledge data base, therefore “Academic” medical practice would occur if the physician observes an unusual case or series of cases that appear similar or demonstrate some unusual characteristic or response to treatment and reports these experiences in the medical literature.

It is possible for an individual physician to integrate all three functions into clinical practice. For example, a primary care practitioner may out of intellectual curiosity decide to study the efficacy of Zantac as compared to Tagamet in patients who present with symptoms of heartburn. If the study is designed well , a statistically significant difference is found, and the results reported in the medical literature (letter to the editor, full paper, etc), we would say this is the practice of "academic primary medicine". In addition, it is possible that our practitioner might also have interest and training in GI disorders, and serves as a resource to colleagues in the local hospital when they encounter complicated GI problems. The Doctor may therefore, at times practice "specialty" medicine.

A given physician therefore may not necessarily be identified exclusively with only one of these roles. The practice may include at different times, "primary", "specialty", or "academic" features, regardless of the location (office,clinic,developmental center, medical school) .

It is suggested that those primary care physicians who provide care to, and are familiar with, the medical problems of people with developmental disabilities begin to collaborate with community-based specialty and Medical School-based academic physicians in the organization of clinical studies of the "Frequently Occuring Medical Conditions" encountered in adults with complex disabilities.

This is important because it is the absence of the practice of "academic" medicine in the field of Adult Developmental Disabilities Medicine that is in part responsible for the failure of adult developmentally disabled individuals to be "mainstreamed" into the "generic" health care system. Study of the complex health care problems frequently encountered in adults with developmental onset brain injury by experienced physicians in collaboration with the academic medical community would provide opportunity to teach medical students, residents, and specialty fellows about those problems, to contribute to "mainstream" medical journals (22) read by "mainstream" medical practioners and to offer adults with developmental disabilities access to "mainstream" medicine.

In conclusion, the practice of "academic" medicine by primary care physicians who are experienced with the frequently occuring medical conditions encountered in adults with neuro-developmental disorders will lead to an expanded medical data base as well as an improved potential for a successful community experience. Developmental center staff and community consultant specialty physicians are therefore in a position to make a major contribution to the support and well-being of adults with disabilities whether they live in the "community" or institution". In order for the experience and talent of these physicians to be optimally utilized, policy makers will need to re-conceptualize the role of "health-services" in the lives of adults who currently reside in the Intermediate Care Facility for the Mentally Retarded (ICF/MR) that exists today.

THE ROLE OF HEALTH SERVICES in the ICF/MR of TODAY: Scope of the problem: There are approximately 340,000 people with Developmental Disabilities in the United States today who receive Medicaid funded long-term care services. Of those 340,000 individuals, approximately 135,000 are served by state and privately operated ICFs/MR (23), while 205,000 are served through Home and Community Based (HCB) waiver programs. There are thousands of other individuals with Developmental Disabilities who are "qualified" to receive Medicaid-funded long-term care services but don't obtain them for any of a variety of reasons, e.g. inadequate funding, income eligibility. The annual cost per person for service in an ICF/MR is nearly $71,000 (24) while the HCB waiver program costs approximately $25,000 per person per year. Because today's institutions contain a high percentage of individuals with complex conditions (25), it remains to be determined whether services and supports currently provided in the institutional setting can be provided less expensively in the community.Overall, it costs the Federal-State Medicaid Program about 13 billion dollars a year (26) to serve people who receive ICF/MR services (9 billion dollars to serve people in ICFs/MR, and 4 billion to serve HCB waiver participants). In other words, about one in every 1000 persons in the USA has a developmental disability and currently receives "special" Medicaid-financed long-term care services at a total cost of approximately 13 billion dollars a year. These dollars are used to meet their needs for residential living, food,shelter,clothing,social, vocational, educational, training, and health services. Not all developmentally disabled individuals require many services, but individuals with moderate to profound mental retardation or other complicating medical or behavioral disorders usually do.

Concept of Active Treatment: To qualify for ICF/MR level of care, an individual must be determined to need "active treatment" (27)."Active treatment" refers to implementation of "programs" (training and/or healthcare) which are designed to promote independent living and to prevent regression of function. "Active treatment" is not synonymous with "training" as many have come to believe. Traditionally "active treatment" programs for people with mild/moderate disabilities emphasize educational and training methodologies rather than "health services." "Health services" can however, for those with severe disabilities, often be the most effective modalities for achieving those active treatment objectives of promotion of independent living and prevention of regression.

This should not be taken to imply that medical interventions should be viewed as an alternative (as opposed to collaborative) form of intervention in developing "active treatment" services for ICF/MR residents. Nor should it be taken to mean that all "health services" should be considered "active treatment". All aspects of an individual's needs for medical and behavioral treatment, education, recreation, and vocational support should be weighed by the interdisciplinary team in preparing appropriate, individualized programs of service. In fact, most people with mild/moderate mental retardation effectively achieve "active treatment" objectives through standard "special" educational and training techniques. For others however, especially those who are severely and profoundly mentally retarded, and have complex medical problems or who are "medically fragile", effective treatment of chronic medical conditions may prevent regression of function and make independent living possible more effectively then could be attained by utilization of "training" methodologies alone.

While it is true that individuals become more trainable and more teachable after treatment of certain conditions (such as acute psychosis, uncontrolled seizures, severe spastic quadriplegia with contractures, and severe gastroesophageal reflux with esophageal pain, vomiting, and GI bleeding) the "active treatment" in these cases is "medical"; achievement of training objectives is a passive benefit of effective medical treatment.

Unfortunately some serious medical conditions frequently go unrecognized in the severely mentally retarded who are nonverbal and cannot give reliable history. It requires a high index of suspicion to detect those medical conditions which interfere with training, and which prevent the development of independent living skills and lead to regression of functional status. Physicians should continually ask: 1) Is there a (treatable) medical condition which is interfering with his/her patient's ability to achieve meaningful independent living? And 2) are there any (treatable) conditions which are contributing to a regression of functional status?

Over the past 25 years the clinical profile of the ICF/MR resident (especially large state operated residential facilities) has changed from one of predominantly mild/moderate mental retardation and few health problems to one of severe/profound mental retardation and complex medical problems. This is because of increasingly stringent policies states use in admitting individuals to ICF/MR facilities, and also the availability of a more flexible source of Medicaid funding through Home and Community Based waiver programs.It is time to re-conceptualize the relationship between training and health services in the ICF/MR of today. Department of Justice (DOJ) surveys of ICFs/MR have repeatedly demonstrated deficiencies in the delivery of health services. It is suggested that these deficiencies have resulted in part by a failure of policy makers to appreciate the appropriate role of health services in the lives of those individuals who are medically fragile or complex and who increasingly occupy the ICFs/MR that have thus far survived the wave of deinstitutionalization. One-sided emphasis on achievement of training objectives and failure to recognize the need for appropriate health services supports may have dire consequences for the medically fragile as has been suggested by recent reports from Strauss and Kastner (28).

The ARC sponsored "Mainstreaming Medical Care Project" (MMCP) and other studies have previously identified factors which interfere with the ability of our present health-services delivery systems to provide quality healthcare to individuals (especially adults) with developmental disabilities. These include "system" barriers, "consumer" barriers, "provider" barriers, and "direct care provider" barriers. Elimination of these barriers is a formidable task to say the least; however, many feel that it is important to try. While it will be extremely difficult to alter societal attitudes towards people with developmental disabilities, there are perhaps other areas that will be amenable to change.

TOWARDS A SOLUTION TO THE PROBLEM: Deficiencies in health services have occurred in part because of "Policy" which redirects physician focus from clinical concerns in order to satisfy a "legalistic" system which is progressively designed to manage predominately bureaucratic issues. This should not be surprising when one takes into account the fact that health services for the developmentally disabled have been provided out of the mainstream of usual generic medical practice for the past 25 years. Thus there have been many advances in medical knowledge which have not been adequately accessed by people with developmental disabilities.

Examples include: 1) The role of Magnetic Resonance Imaging (MRI) in the evaluation and management of epilepsy, motor disorders, and severe behavioral problems; 2) evaluation and management of gastrointestinal disorders frequently encountered in people with developmental disabilities (e.g. Barrett's esophagus, H. pylori infection); 3) treatment of spasticity with intrathecal baclofen; 4) treatment of osteoporosis with newer agents, such as alendronate; 5) treatment of neurologically based behavioral disorders with newer psychotherapeutic agents (e.g. Olanzapine); and 6) treatment of "refractory" epilepsy with newer anti-epileptic medication, e.g. Lamotrigine and Topiramate.

It is suggested that policy makers begin to address the problem of "out-of-date" health services and promote "access" initiatives for people with severe disabilities who have complex medical problems or who are medically fragile. It is further suggested that these initiatives might include measures to promote affiliations of developmental centers with Medical Schools . In the past Veteran's Administration Hospitals and nursing homes have affiliated with Medical Schools and have found health services to be improved as a result. The creation of "Academic Developmental Centers" would facilitate appropriate collection and utilization of data , enhance physician education, and provide access to medical specialties that are needed by people with disabilities.

The creation of incentives to attract "academic" medical school based physicians to serve as community consultants as well as on staffs of Developmental Centers where many medically fragile and complex disabled adults reside would begin to solve several problems. Academic physicians would provide needed primary care services as before, but would also organize clinical studies to improve the medical data base and discover better ways to deliver services. Specialty consultations would be performed by his or her associates at the Medical School. If admission to a hospital is required he or she would serve as the Admitting and Attending Physician in the hospital. This practice of having staff physician at the developmental center (who is also faculty at the Medical School) perform admissions to the hospital would solve several major problems. First it would prevent discontinuity of care, which can be responsible for increased morbidity and mortality. Communication between the hospital and Developmental Center staff would be improved so that medication, and other treatment errors would be less likely to occur. The clinical skills of the Developmental Center staff physician would be enhanced by his or her hospital activities and recruitment of physicians would be improved by providing to prospective medical employees, a full range of clinical activities, instead of the professional isolationism that is fostered by the present system. These policy changes could be made without incurring additional cost to the government. Furthermore, by having the Medical School responsible for health services, a medico-legal"umbrella" of protection is provided should anyone question adequacy of health services provided at the Developmental Center. Lastly, in this current atmosphere of "managed care," since medical schools are not primarily "profit" motivated, the likelihood of deficient care resulting from concerns about the "bottom line," would be reduced.

Finally, Harold L. May MD, in his chapter entitled “Changing Conditions and the Provision of Care” (29) commented on the advantages of “links” between developmental centers and medical centers.

Dr. May observed that “cooperating institutions can benefit, learning from each other while teaching each other. Piece by piece, they can dismantle the walls of separation that previous generations have mistakenly built.” 

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