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Focusing on values and lifestyle outcomes in an effort to improve the quality of residential services in Oregon.

Service systems for individuals with developmental disabilities are striving to assist people to obtain a higher quality of life, consistent with principles associated with continuous quality improvement. Through innovative, systematic, and widespread application of such principles, Oregon's Office of Developmental Disability Services is helping residential programs improve lifestyle outcomes for participants. Evaluations suggest that involved residential programs are maintaining implementation of the continuous quality improvement procedures and are finding them important and useful. More fine-grained research suggests that some programs are becoming more adept at identifying participants' preferred activities and incorporating them into Individualized Support Plans as well as improving participants' levels of physical and social integration.

Health Services Research↗

The treatment of a chronic organic mental disorder with dextromethorphan in a man with severe mental retardation.

Response to dextromethorphan (15 mg b.i.d.), an antitussive agent not usually considered to have psychotropic properties, was seen in a 25-year-old man with severe developmental disabilities, congenital rubella, and an organic mental disorder. Dextromethorphan affects CNS serotonergic systems, and this was the probable therapeutic mechanism. This and other published cases suggest the existence of a distinct organic mental syndrome in developmentally disabled persons which responds to drugs that increase indoleaminergic activity.

Adult↗

Can the value choices in DALYs influence global priority-setting?

The "disability adjusted life years" (DALYs) are increasingly used as a tool for decision-making and for describing the distribution of the Global Burden of Disease. The "DALY" combines information about mortality and morbidity, with several value choices such as disability weighting, age-weighting and discounting. These value choices imply that life years are assigned different value, depending on the age and the health state they are in. How robust is the distribution of DALYs to changes in these value choices, and are the choices transparent at the point of use? We calculated the burden attributed to "developmental disability due to malnutrition" and "major depression" with alternative value choices in a simple sensitivity analysis. In particular, we explored the relation between disability weight, health state description and incidence rate. The formulae and information needed was found in the World Health Organisation (WHO) publications using DALYs, and in a survey among international health workers. We found that alternative age-weights, disability weights and discount rate led to an inversion in the ranking of the burden of the two conditions. The DALY loss attributed to "developmental disability due to malnutrition" increased from 14 to 90%, while that of "major depression" sunk from 86 to 10%. The value choices currently used, tend at underestimating the disease burden attributed to young populations and to communicable diseases and this goes against the renewed efforts of the WHO of targeting diseases that are typical of poor populations. While the value choices may be changed, lack of transparency is a more profound problem. At the point of use, the number of DALYs attributed to a condition cannot be fully disaggregated. Hence, one cannot know which part of a DALY loss reflects the age group affected, the prevalence, the mortality rates, the disability weight assigned to it, or to how the condition has been defined. A more transparent and useful approach, we believe, would be to present the years lost due to a disease, and the years lived with a disease separately, without disability weights, age-weights and discounting. This would keep the best of the DALY approach and come closer to the aim of disentangling science from advocacy.

Decision Making, Organizational↗

Life expectancy for children with cerebral palsy and mental retardation: implications for life care planning.

OBJECTIVES: Physicians may be asked by attorneys or other patient advocates to help plan for the long-term needs of children with cerebral palsy (CP) and developmental disability (DD). The first step in such planning is to thoroughly examine the literature dealing with life expectancy in these populations. This review paper comprehensively reviews the literature relating to survival in children with cerebral palsy and developmental disability. STUDY SELECTION: A Medline data search was completed using the terms cerebral palsy, life expectancy, survival, as well as other pertinent terms. Further articles were gleaned from bibliographies of pertinent literature. DATA SYNTHESIS: Certain key disabilities can be used to accurately predict life expectancy in children with cerebral palsy and mental retardation. These include: (1) presence and severity of mental retardation, (2) inability to speak intelligible words, (3) inability to recognize voices, (4) inability to interact with peers, (4) severity of physical disability, (5) use of tube feeding, (6) incontinence, and (7) presence and severity of seizures. CONCLUSIONS: Literature review definitively shows that children with CP and DD have a diminished life expectancy, which can be assessed based on simple clinical examination findings.

Cerebral Palsy↗

Building social relationships through valued roles: three older adults and the community membership project.

The experiences of three older adults with developmental disabilities highlight ways in which social relationships can be nourished through the establishment of community roles. Members of the Community Membership Project of the Center on Aging and Community used paid community builders working individually with older persons who had developmental disabilities in order to help them obtain positive, valued social roles and relationships with nondisabled community members. As a means to this end, participants were supported to engage in community activities corresponding to the interests and talents discovered in an initial period of exploration. Stories of these community builders' work illustrate the intentional strategies and concerted effort necessary to create community connections and meaningful relationships.

Community Networks↗

The effects of antiepileptic medications on the social skills of individuals with mental retardation.

Prevalence rates of epilepsy are much higher among persons with developmental disabilities compared to the general population. Anticonvulsant medication is the most common method of treating seizure disorders. Many of these antiepileptic medications (AEDs) are associated with various side effects, which may have detrimental effects on the social skills of those with developmental disabilities. The present study investigated the effects of AEDs on the social skills of individuals with mental retardation (MR) residing in an institutional facility. The social skills of 130 individuals were assessed by the Matson Evaluation of Social Skills for Individuals with sEvere Retardation (MESSIER). Sixty-five of these individuals were diagnosed with a seizure disorder and received only one AED at the time of this study. These individuals were taking one of three AEDs (carbamazepine, valproic acid, or phenytoin). Participants belonging to one of these three medication groups were matched with residents for age, gender, level of MR and race, who did not have seizures or receive AEDs. MESSIER scores of each medication group were compared to its respective control group. Those individuals receiving phenytoin presented less positive social skills than their matched counterparts in the phenytoin-control group.

Adult↗

Employment of physical therapist assistants in a residential state school.

Development of a job description for physical therapist assistants in a residential center serving persons with developmental disabilities is presented. Academic preparation and ethical guidelines for the assistant were reviewed to determine appropriate job responsibilities. Assistants had sufficient academic preparation in modalities and bronchial drainage to function effectively and partial academic preparation in other areas related to treating developmental disabilities. Substantial on-the-job training was necessary for the assistant to perform specific tasks competently. Need for additional training was not considered a deterrent to hiring the assistant.

Allied Health Personnel↗

Costs of epilepsy in an intermediate care facility for persons with mental retardation.

Epilepsy is a significant comorbid condition in institutionalized persons with developmental disabilities and may contribute significant additional costs. This study was conducted to provide an estimate of the costs of epilepsy from the institutional perspective. Costs were measured retrospectively for 50 persons with epilepsy and 50 persons without epilepsy matched by severity of developmental disability. A time and motion study was employed to assign opportunity costs to documented nursing and physician activities. Two separate methods of attribution were used and incremental costs attributable to epilepsy were found to be approximately $825 and $918 per person over a 6-month period. The following categories accounted for costs: personnel (47.0%), drug (39.6%), hospitalization (9.4%), and laboratories/procedures (4.0%). Results are useful for describing the economic burden of epilepsy.

Adult↗

Pain insensitivity and indifference: alternative explanations for some medical catastrophes.

Communication difficulties are a commonly cited barrier to health-care provision for individuals with developmental disabilities. However, an examination of the medical and psychological literature on pain suggests that alternative explanations for some instances of medical catastrophe are pain insensitivity or pain indifference. Although the proportion of case studies of pain-absent individuals who also have developmental disabilities is much higher than would be expected given the size of this subpopulation, proper incidence studies have not been conducted. Reinterpretation of a study on intestinal obstruction-caused mortality suggests that there is a pressing need for such incidence studies.

Catastrophic Illness↗

[Bourneville's tuberous sclerosis: neurological manifestations and skin anomalies].

A follow up of 14 cases of tuberous sclerosis is presented. Cutaneous signs, epileptic seizures and developmental disabilities were recorded over a period ranging between 2 and 25 years from the onset of symptoms. A correlation can be established between the time of appearance of epilepsy and the degree of mental retardation. Antiepileptic treatment does not seem to prevent developmental disability.

Child↗

Teaching VOCA use as a communicative repair strategy.

Students with developmental disabilities often rely on prelinguistic behavior (e.g., reaching, leading) to communicate. When listeners fail to attend to prelinguistic behaviors, students may benefit from responding with an alternative form of communication to repair the breakdown. In the present study, we taught two students with developmental disabilities to repair communicative breakdowns by using a voice-output communication aid (VOCA). Intervention occurred at morning snack time when the students had the opportunity to access preferred items through prelinguistic behavior (e.g., reaching, guiding). Breakdowns occurred when the listener failed to attend to the student's initial request. Effects of the intervention were evaluated in a multiple-baseline design across subjects. Both students learned to use the VOCA to repair communicative breakdowns. As VOCA use was acquired as a repair strategy, the students also began to use the device to initiate requests when there had been no breakdown in communication. The intervention appeared to be an effective approach for supplementing prelinguistic behaviors with an additional option for communicating a request.

Adolescent↗

Language disorders and prognosis for reading disabilities in developmental age.

2 groups of language-disordered children were studied regarding the reading levels reached at the end of the first year of school. The first group was composed by children with language retardation mainly on phonological level, the second group was composed by children with retardation also on semantic-syntactic level. The results confirmed the strong association between reading disability and language disorders and yielded significant differences between the two groups: the reading achievement seemed to be associated mainly to semantic and syntactic competences.

Achievement↗

Medical evaluation of persons with mental retardation referred for psychiatric assessment.

Many people with developmental disabilities and "challenging behaviors" present to primary care physicians, internists, or general psychiatrists for assessment and treatment. These clinicians seek to provide the comprehensive biopsychosocial assessment necessary for successful treatment, but may encounter interference from funding agencies. Epidemiologic data on medical comorbidity in persons with developmental disabilities with a primarily "behavioral" presentation may assist in facilitating these assessments. A total of 1135 people with mental retardation referred for mental health assessment were medically evaluated according to a two-step protocol which included a screening evaluation of all persons and expanded testing, depending on clinical status. The workup was considered complete when the person with either improving clinically or had a specific terminal diagnosis and was as comfortable as possible. Medical comorbidity was about double that of people referred for mental health assessment who do not have mental retardation. Common conditions presented in unusual ways, and less frequent conditions presented more often. The cost of the medical assessments was promptly recovered in a variety of savings to systems. Comprehensive medical assessment discloses increased medical comorbidity in persons with mental retardation referred for psychiatric evaluation. Comprehensive treatment based on the assessment findings appears to be associated with better clinical outcomes and cost savings to systems.

Adult↗

Autonomy in residential facilities and community functioning of adults with mental retardation.

Over a 3-year period, we examined whether the autonomy of 58 adults living in residences for people with developmental disabilities was associated with their adaptive behavior and community integration. Degree of resident autonomy included measures of opportunities for choice-making and level of involvement in policymaking. All of the participants lived in nursing homes at baseline and in residential settings for people with developmental disabilities at follow-up. Results indicated that opportunities for autonomy in residential settings were related to residents' adaptive behavior and community integration. More opportunities for choice-making in residences was associated with greater adaptive behavior, whereas smaller residence size and more resident involvement in decision-making were associated with greater community integration.

Adult↗

Quality assurance and impact measurement of university affiliated programs.

Provisions in the Developmental Disabilities Bill of Rights and Assistance Act (PL 101-496) emphasize the need to measure the impact of federally supported services in promoting the independence and productivity of clients and their integration in community settings. As a part of this overall emphasis, the Administration on Developmental Disabilities (ADD) has initiated a Quality Enhancement System for use in the University Affiliated Programs (UAPs) encompassing both process (formative) and outcome or impact (summative) evaluation. Whereas formative measures and techniques have been used for many years and are well developed, measures and techniques to determine impact have received much less attention in the professional literature. Characteristics of successful UAPs were outlined as a basis for suggesting appropriate measures of impact of UAP programs on clients and their families, on host and affiliated universities, and on the service system. Some barriers to implementation of impact measures in UAPs were discussed.

Activities of Daily Living↗

Developmental outcome at 12 months corrected age for infants born less than 30 weeks gestation: influence of reduced intrauterine and postnatal growth.

Infants born at less than 30 weeks gestation were prospectively followed to examine the consequences of size at birth and subsequent growth on development in the first year of life. A total of 438 infants were admitted to the intensive care nursery; 53 (12.1%) infants were small for gestational age (SGA). A total of 315 infants survived to discharge; 19 (6%) were SGA. SGA infants were matched with appropriate for gestational age (AGA) infants for sex, GA, incidence of chronic lung disease and head ultrasound at discharge. The high death rate amongst SGA infants was attributable to a combination of extreme prematurity and inappropriate intrauterine growth. There was no difference between SGA and AGA groups for major developmental disability at 1-year corrected age. The effect of subsequent growth on development was examined by comparing children in the cohort above (Appropriate) and below (Small) the 10th percentile for weight at 1 year. Children small at 1 year had a significantly higher rate of major developmental disability at 1 year. Perinatal variables demonstrate that those infants small at 1 year had been of significantly younger GA, lighter BW, had received more ventilator and oxygen therapy. They also had a higher incidence of chronic lung disease. Thus, being born SGA at less than 30 weeks is not of itself associated with increased disability at 1 year when other confounding factors are taken into account. While a causal link has not been established, poor growth in the first year of life does appear to be associated with poorer outcome at 1 year, irrespective of birth status.

Birth Weight↗

Problems of nutritional assessment in the community.

The present paper explores the problems associated with assessment of nutritional status in the community and reviews the literature related to this subject. The first problem is one of terminology, since a logical first step before assessment is screening, which identifies characteristics known to be associated with dietary or nutritional problems. Its purpose is to differentiate individuals who are at high nutritional risk or have poor nutritional status. There are certain factors which should alert the primary health care team to the fact that nutritional intake may be reduced and that risk of malnutrition is increased. These include disease condition, functional disabilities, inadequate or inappropriate food intake, poor dentition or difficulty swallowing, polypharmacy, alcoholism, depression, poor social circumstances or recent discharge from hospital. Patients suffering from these factors need to be identified so that screening becomes a routine part of their medical treatment. At-risk groups include the elderly, the chronically ill, those with cancer and neurological disorders, post-surgical patients and children with developmental disabilities. In the community, practice and community nurses see the majority of at-risk patients and should carry out screening. A number of screening tools have been developed for community use. Most are aimed at the elderly population, but there are others designed to assess nutritional risk in children with developmental disabilities and the general population. These are reviewed and problems of content and validity identified. Some problems associated with nutritional assessment are also reviewed.

Community Health Services↗

Use of commercial 'authoring systems' for medical education.

A recent development in computer-assisted medical instruction has been the introduction of 'authoring systems'. Authoring systems are computer programs which can allow an instructor to prepare computer-based medical instructional materials without the need to know programming languages or have more than minimal familiarity with the computer hardware. This report documents the use of a commercially available authoring system that was used to prepare a tutorial for medical student instruction. This lesson presented information about paediatric developmental disabilities in both a text and question-and-answer format. Significant improvement in knowledge was demonstrated by the pre- and post-test results of the study group compared to the control group. The control group consisted of students who did not view the tutorial but had been assigned to a paediatric developmental disabilities clinic. The medical students who viewed the tutorial generally had very favourable comments about the use of such a system for the presentation of new information.

Attitude of Health Personnel↗