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Awareness, action, and collaboration: how the self-advocacy movement is empowering for persons with developmental disabilities.

In response to stigmatization and lack of opportunities in the United States, a self-advocacy movement by and for persons with developmental disabilities has grown. In parallel, in the empowerment literature in the social sciences, authors have sought to conceptualize the process of becoming empowered. There is little in the empowerment literature that fosters an understanding of the self-advocacy movement. In this paper, four relevant principles of empowerment (which concern gaining awareness of societal discrimination, individual rights, and personal strengths; taking action through participation in community organizations; and working collaboratively with supportive advisors) were considered. Through awareness, action, and collaborative support, self-advocates can transform themselves from marginalized targets of discrimination to respected citizens.

Awareness↗

Positive effects of interaction coaching on infants with developmental disabilities and their mothers.

Modification of maternal responsivity was attempted in a study of the effects of interaction coaching. Twenty-three mothers and their infants with developmental disabilities participated in an interaction coaching component that consisted of six sessions of providing feedback to mothers about incidence of overstimulation observed on videotapes. Suggestions were given for ways to interact in a more contingently responsive manner. Compared with a control group of 17 mother-infant pairs, the interaction coaching group mothers increased responsibility and decreased stimulation. The infants were less fussy and performed better on standardized developmental assessments.

Arousal↗

Rumination and vomiting in the developmentally disabled: a critical review of the behavioral, medical, and psychiatric treatment research.

Medical and psychiatric research regarding the treatment of vomiting and rumination among developmentally disabled individuals was selectively reviewed. Because of serious methodological flaws which pervade the psychiatric literature, claims for the effectiveness of psychiatric interventions for vomiting and rumination cannot be justified. Medical interventions (e.g., pharmacological and surgical interventions) were found to be effective when rumination was attributable to a specific organic pathology. In the absence of identified organic pathology for rumination, medical interventions are of questionable efficacy and because of the risks and side effects associated with these procedures, are seldom the intervention of first choice for functional rumination. Behavioral procedures for the treatment of vomiting and rumination are described and critically reviewed for their efficacy, side effects, and the generalization and maintenance of their effects. Although methodological weaknesses limit conclusions regarding the efficacy of some behavioral interventions, several procedures have sound experimental support including oral hygiene, differential reinforcement of incompatible behaviors, and food satiation procedures. These behavioral interventions are the treatments of choice when organic causes of rumination cannot be identified. Suggestions for future research and applications are discussed.

Adolescent↗

Staff recruitment challenges and interventions in agencies supporting people with developmental disabilities.

Recruitment challenges and costs were identified by administrators from 129 randomly selected agencies that provide residential, vocational, and other services to persons with developmental disabilities in Minnesota. Finding qualified applicants was the most difficult staffing problem reported. Common recruitment incentives included providing competitive benefits, allowing time off without pay, and offering paid leave time. Relatively few agencies used innovative strategies (e.g., bonuses for employees who recruit new workers). The average agency had vacancy rates of 6% in direct-support positions and 4% in first-line supervisor positions. On the basis of these findings, one could determine that the cost of advertising and overtime for vacant positions in Minnesota could approach $6.7 million per year.

Costs and Cost Analysis↗

The development of a treatment-research project for developmentally disabled and autistic children.

This paper describes the development and main results over the last 30 years from the treatment-research project with developmentally disabled (autistic) children in the Psychology Department at the University of California, Los Angeles (UCLA). Three important dimensions in treatment research are addressed. The first pertains to the role of serendipity or accidental discoveries, the second to the importance of pursuing inductive rather than theory-driven research, and the third to the importance of adding in a cumulative and step-wise manner to improve treatment adequacy. Data from various areas of treatment research have been used to illustrate new directions for the project. These illustrations center on early and successful attempts to isolate experimentally the environmental variables that control self-injury, failure to observe response and stimulus generalization with subsequent loss of treatment gains, and the main results of intensive and early behavioral intervention in the child's natural environment. Effective treatment for severe behavioral disorders is seen to require early intervention carried out during all or most of the child's waking hours, addressing all significant behaviors in all of the child's environments, by all significant persons, for many years.

Autistic Disorder↗

Enhanced small group instruction using choral responding and student interaction for children with autism and developmental disabilities.

The use of effective instructional strategies in small groups was investigated to determine learning effects for 24 elementary age students with autism and developmental disabilities. Effective strategies included (a) the use of choral responding; (b) the use of student-to-student responding; (c) the rotation of materials every 5 minutes during the 30-minute group while teaching 2 to 3 concepts; and (d) the use of random, unpredictable trials for student responding. Thirty-minute language groups were targeted to teach receptive and expressive skills using pictures and common objects across five categories (e.g., household items, foods). Results showed increased opportunities to respond, increased levels of responding and academic engagement, higher gains on weekly criterion-referenced pre- and posttests, and decreased passive and inappropriate student behavior during interventions.

Activities of Daily Living↗

A code for assessing teaching skills of parents of developmentally disabled children.

The reliability of a code to measure teaching skills was assessed by using it to evaluate a behavioral training program for parents of developmentally disabled children. Twelve sets of parents participated in a program to give them the skills needed to be teachers in the areas of behavior management and language acquisition. Using group meetings and home visits, parents were taught general principles of behavior change as well as intervention strategies for specific problems. A sample of parents' teaching behaviors with their children was videotaped three times before and once after treatment. There were no significant changes in teaching behavior before treatment. After training, the results showed that the observation code could discriminate reliably between parents' correct and incorrect use of eight discrete and specifiable behavior modification skills. The significance of these findings and the uses and limitations of the code were discussed.

Behavior Therapy↗

A study of behavior modification for developmentally disabled children.

A tape-slide series, using a desensitization and modeling approach, was developed in order to prepare three- and four-year-old developmentally disabled children for an initial dental examination. The tape-slide series pleasantly describes what to expect during the first visit to the dental office. A clown and a four-year-old girl were used as models. Twenty-eight children participated in the study, divided into two groups: control and experimental. A requirement for qualification as a patient was that the child not have had any previous dental experience. Three techniques for measuring behavior were used: heart rate, a modified Melamed's scale, and a dentist's subjective evaluation. The results demonstrated that: a) The experimental group was in a high state of arousal when starting the dental procedures; b) Children exposed to the tapeslide series showed worse behavior and a higher heart rate than children not exposed to the series; c) Heart rate was sensitive and objective in measuring anxiety and arousal in the dental setting; d) Modified Melamed's scale was not sensitive enough to measure microbehavior in this study; e) The subjective dentist's evaluation showed the impossibility of preventing a biased interpretation of behavior by the evaluator.

Analysis of Variance↗

Consumer evaluation of an ecobehavioral program for families with children with developmental disabilities.

The purpose of this research was to conduct a consumer evaluation of Project Ecosystems, an in-home ecobehavioral program serving families with children with developmental disabilities. A consumer satisfaction questionnaire was designed and validated to examine process, programmatic outcome, and to assess perception of staff performance across consumer groups. The questionnaires were distributed to parents, careproviders, Regional Center workers who provided the referrals to Project Ecosystems, and other professionals who worked with Project Ecosystems' staff. The questions were divided into process, outcome, and staff performance so each element could be separated in the analysis. The data suggest considerable satisfaction from the consumers of Project Ecosystems' services.

Adolescent↗

A review of choice research with people with severe and profound developmental disabilities.

During the last 15-20 years, a significant amount of research has focused on the issue of choice among people affected by severe-profound developmental disabilities. Studies have been directed at (a) assessing the ability of those people to choose between different options and express preferences that could be used for reinforcement or occupational purposes, (b) building choice opportunities within those people's daily situations, and (c) evaluating the possible effects of choice making on those people's performance and behavior. This paper reviews the aforementioned studies and comments on the main findings and related questions.

Behavior Therapy↗

A prospective randomized double-blind study of gastroesophageal reflux surgery in pediatric-sized developmentally disabled patients: Nissen fundoplication versus Angelchik prosthesis.

In order to compare the standard Nissen fundoplication with the more recent Angelchik antireflux prosthesis, 47 pediatric-sized, developmentally disabled patients were prospectively randomized to receive either of these gastroesophageal antireflux procedures. The two groups were comparable at the time of surgery with regard to age, weight, surface area, emesis, number of chest radiographs, medications, lower esophageal sphincter pressure, and number and duration of reflux episodes during standard acid reflux testing. The Angelchik group required significantly less anesthesia time than the Nissen group: 107.4 +/- 22.6 min (mean +/- SD) versus 156.5 +/- 42.4 min (p less than 0.001). There was no difference in length of postsurgical hospital stay. Six months after surgery, both groups showed improvement. There was no significant difference between the Angelchik and Nissen groups in mean subjective assessment score, increased weight gain, decreases in emesis, numbers of chest radiographs, hospital days, or medications, increased lower esophageal sphincter pressure, or decreased numbers and duration of reflux during acid reflux testing. Long-term follow-up of eight Angelchik and 10 Nissen patients 12-30 months postsurgery (Angelchik 21.6 +/- 6.0 months, Nissen 21.9 +/- 5.0 months) demonstrated no significant difference in the percent of time the distal esophageal pH was below 4.0. Significant complications potentially related to the type of procedure developed in 1/21 patients in the Angelchik group and 1/17 patients in the Nissen group. We conclude that both procedures are usually effective for the surgical treatment of gastroesophageal reflux. Further study is indicated in order to establish the long-term superiority of one procedure.

Adolescent↗

Medical and behavioral symptoms as potential medication side effects in adults with developmental disabilities.

The incidence of medical and behavioral symptoms that could occur as side effects of psychotropic medication was assessed in a sample of 30 adults with developmental disabilities. Using a retrospective chart review method, we measured symptoms in six a priori classes of potential side effects over a 2-year period. The majority of side effects involved apparent effects of the psychotropic medications on behavior, mood, or sleep. Different patterns of changes in medication prescription, in relation to recorded side effects, were observed. Overall, there was a significant positive relation between the number of potential side effects recorded and the number of psychotropic medication changes made. Our findings suggest several patterns of side effects associated with psychotropic medication use.

Adult↗

Prevalence of low bone density in women with developmental disabilities.

This study was designed to assess the prevalence and severity of low bone mineral density in an institutionalized population of postmenopausal women (n = 79) with developmental disabilities, using quantitative ultrasound of the calcaneus. The results demonstrate that this population has a significantly lower quantitative ultrasound index (QUI) of the calcaneus compared with a referent population of age-matched control subjects without mental disabilities. We used the QUI T-score threshold of <-2.0 standard deviations (SDs) to define individuals at high risk for osteoporosis, and 82% of the study participants met this criterion. Furthermore, approx 43% of the population had a heel QUI that was more than 2 SDs below that of age-matched control subjects, consistent with a severe degree of demineralization.

Autistic Disorder↗

End-of-life care for a man with developmental disabilities.

BACKGROUND: Science can artificially maintain many essential life functions. Does such care prolong life or dying? METHODS: A case is described of a patient with developmental disability with unknown health care choices who was hospitalized for drug-resistant urosepsis. He developed aspiration pneumonia, deep vein thrombosis, and respiratory arrest. He required gastrostomy, tracheostomy, artificial ventilation, parenteral nutrition, hemodialysis, multiple anti-infective agents, and blood transfusions. On day 58, a bioethics committee recommended against cardiopulmonary resuscitation. On day 66, the patient's conservator concurred but required continuation of artificial ventilation. To the dismay of some caretakers, the patient continued to receive intrusive care until his death on day 104. The hospital charge was $709,206. RESULTS AND CONCLUSION: Hospital care of patients with mental incapacity can be clinically and ethically challenging. End-of-life decisions can be facilitated when the patient's legal representative and physician actively advocate the patient's best interests and communicate frequently and openly. Suggestions are made for such exigencies.

Adult↗

Design of an integrated system for Milwaukee children with developmental disabilities.

Currently, data on children with developmental delays are collected on an as-needed basis and in general are created and maintained locally. In this paper, a comprehensive, user-friendly integrated system design for children age birth to three years with disabilities in Milwaukee County is proposed. After the prototype system is developed and tested as a "proof-of-concept" the product system will be migrated into the Wisconsin Public Health Information Network (WI-PHIN) as a Program Area Module (PAM).

Child, Preschool↗

Early identification of infants at risk for developmental disabilities.

Early identification of infants at risk for developmental delay is of the utmost importance to initiate appropriate intervention. Although early detection can be a challenge, the primary care practitioner is in the ideal position to recognize and refer these children. Early recognition requires an in-depth knowledge of the child's history, general physical examination, and developmental level and an understanding of the expected developmental precursors of a skill. Referral to appropriate interventional resources leads to a formalized developmental and neurologic evaluation. If necessary, the development of an interdisciplinary comprehensive plan of remediation can occur and a definitive diagnosis can be made. If no significant problem is found, a decision to provide expectant observation is warranted.

Child Development↗

Providing services to Asian Americans with developmental disabilities and their families: mainstream service providers' perspective.

This survey investigated the opinions and perceptions of 44 mainstream social service providers regarding barriers to Asian Americans with developmental disabilities and their families receiving appropriate supportive services. Six main barriers were identified: (1) Language and communication difficulties; (2) Lack of knowledge concerning mainstream service delivery system; (3) Perceived cultural differences; (4) Being a "minority within a minority" in the service delivery system; (5) Individual differences within families and differences among Asian ethnic groups; and (6) Lack of resources to meet needs within the family. Implications of the interrelationships among the identified barriers were discussed.

Adolescent↗