Autonomy and competency--self-determination in the lives of adults with developmental disabilities

The principle of autonomy anchors decision making for most North Americans. For people with disabilities, however, the quest for self-determination is often countered by society's responsibility to take care of those who have some area of weakness or incompetence. Those who serve this population must, therefore, intentionally shift the balance of power to encourage independent living and to give people with disabilities a voice in their own lives. Changes in the system of care, training, and the way questions of competency are adjudicated are contemplated.     

Concerns with oral health care services for adults with cognitive and intellectual disabilities

It is of interest to document data on oral health care services for adults with cognitive and intellectual disabilities. Hence, a study protocol was registered at the International Prospective Register of Systematic Reviews (PROSPERO) with registration number: CRD42020150759. We used PubMed, Science Direct, LILACS and SCIELO to collect data from known literature using keywords containing MESH (Medical Subject Headings) terms. The risk of bias rating for the collected data was calculated using the Newcastle-Ottawa assessment Scale. The AHRQ (Agency for Healthcare, Research and Quality) was used for classifying the level of evidence in the collected data. Analysis of available data shows that there is a lack of dentists with adequate skills to treat people with disabilities resulting in high cost for dental treatment. Thus, we conclude that inconvenient location of dental clinic, lack of dentists willing to treat people with disabilities and attitude of dental staff towards people with learning disabilities were considered as barriers and challenges faced for dental health service utilization in this context.     

Relaxation training as a treatment for chronic headaches in an individual having severe developmental disabilities

We have assessed effects of a simplified relaxation training on the frequency of headaches and consumption of analgesic headache medication in an adult male with severe developmental disabilities as well as chronic mixed headaches. The subject received Behavioral Relaxation Training (BRT) after a baseline period during which frequency of headache complaint, analgesic medication consumption, and independent relaxation behaviors were monitored. BRT consists of the utilization of modeling, prompting, feedback, and positive reinforcement in order to establish and maintain the subject's participation in 10 overt relaxed postures. The behaviors were learned to at least an 80% proficiency during a 10-minute alternating self-regulatory (1 min)/corrective feedback (1 min) relaxation phase across several sessions. Headache complaints were reduced by 48% and analgesic medication consumption by 51% as assessed during a 2-month posttreatment evaluation. These results should be considered not only as support of BRT as a viable method of relaxation training but also as a suggestion that BRT and other self-regulatory treatment should be considered for use with individuals having moderate to severe developmental disabilities.This research was supported in part by grants from NIMH, MH-41341, and NINCDS, NS-23440.     

Relaxation training as a treatment for chronic headaches in an individual having severe developmental disabilities

We have assessed effects of a simplified relaxation training on the frequency of headaches and consumption of analgesic headache medication in an adult male with severe developmental disabilities as well as chronic mixed headaches. The subject received Behavioral Relaxation Training (BRT) after a baseline period during which frequency of headache complaint, analgesic medication consumption, and independent relaxation behaviors were monitored. BRT consists of the utilization of modeling, prompting, feedback, and positive reinforcement in order to establish and maintain the subject's participation in 10 overt relaxed postures. The behaviors were learned to at least an 80% proficiency during a 10-minute alternating self-regulatory (1 min)/corrective feedback (1 min) relaxation phase across several sessions. Headache complaints were reduced by 48% and analgesic medication consumption by 51% as assessed during a 2-month posttreatment evaluation. These results should be considered not only as support of BRT as a viable method of relaxation training but also as a suggestion that BRT and other self-regulatory treatment should be considered for use with individuals having moderate to severe developmental disabilities.     

Clinical guidelines contribute to the health inequities experienced by individuals with intellectual disabilities

ABSTRACT: BACKGROUND: Clinical practice guidelines are developed to improve the quality of healthcare. However, clinical guidelines may contribute to health inequities experienced by disadvantaged groups. This study uses an equity lens developed by the International Clinical Epidemiology Network (INCLEN) to examine how well clinical guidelines address inequities experienced by individuals with intellectual disabilities. METHODS: Nine health problems relevant to the health inequities experienced by persons with intellectual disabilities were selected. Clinical guidelines on these disorders were identified from across the world. The INCLEN equity lens was used as the basis for a purposedesigned, semistructured data collection tool. Two raters independently examined each guideline and completed the data collection tool. The data extracted by each rater were discussed at a research group consensus conference and agreement was reached on a final equity lens rating for each guideline. RESULTS: Thirty-six guidelines were identified, one of which (2.8%) explicitly excluded persons with intellectual disabilities. Of the remaining 35, six (17.1%) met the first criterion of the equity lens, identifying persons with intellectual disabilities at high risk for the specific health problem. Eight guidelines (22.9%) contained any content on intellectual disabilities. Six guidelines addressed the fourth equity lens criterion, by giving specific consideration to the barriers to implementation of the guideline in disadvantaged populations. There were no guidelines that addressed the second, third, and fifth equity lens criteria. CONCLUSIONS: The equity lens is a useful tool to systematically examine whether clinical guidelines address the health needs and inequities experienced by disadvantaged groups. Clinical guidelines are likely to further widen the health inequities experienced by persons with intellectual disabilities, and other disadvantaged groups, by being preferentially advantageous to the general population. There is a need to systematically incorporate methods to consider disadvantaged population groups into the processes used to develop clinical guidelines.     

Project BRIDGE--people with disabilities participate in their health care decisions

Project BRIDGE is a complex of activities through which individuals affected by major mental illness, developmental disability, or the effects of aging become engaged in their health care decision making. This article explains the development of BRIDGE through the profound stories of Julia Warren, Theresa Draper, and Jim Overstreet.