Mental Retardation Developmental Disabilities Research Articles

Substance Abuse and Mental Retardation: Balancing Risk Management with the “Dignity of Risk”

Substance abuse (SA) is a documented issue for many people with mental retardation/developmental disabilities (MR/DD). However, little empirical data exist regarding the appropriateness or effectiveness of prevention or treatment approaches for this population. Compounding this issue, access to SA treatment for this population is also limited, making social work case management a challenge. For social workers, the problem of SA among people with MR falls into a gray area between the facilitation of the “dignity of risk” and risk management. Discussions of Deborah Stone's commentary on balancing liberty, equality, and security in social policy are presented in light of ways to encourage the implementation of the “dignity of risk.” Linking theory to practice, a baseline framework is provided for planning individualized, self-determination-oriented case management approaches for people with SA who have MR.

Lessons Learned From the Provision and Funding of Employment Services for the MR/DD Population

The goal of Ticket to Work is to support job acquisition and job retention among Social Security Administration (SSA) disability beneficiaries in job situations where earnings are sufficient to move these individuals off SSA disability cash benefits. This article considers the adequacy of provider payment incentives through the Ticket to Work for helping persons with mental retardation/developmental disabilities (MR/DD) achieve employment outcomes. It examines the work support strategies that have demonstrated their effectiveness in assisting persons with MR/DD acquire and retain employment, particularly with SSI and SSDI recipients. It analyzes the experience to date in using performance-based funding to purchase job acquisition and retention services, and the implications of this experience for the implementation of the Ticket to Work reforms. Specific areas related to the Ticket to Work addressed in the article include: the ceilings on current proposed milestone-outcome and outcome payments in the Ticket compared to what is known about providers' cost structures in other performance-based funding systems; and the factors likely to influence the decision-making of Employment Networks in accepting or rejecting Tickets. The article concludes with recommendations for restructuring the Ticket to Work to improve the adequacy of access to the Ticket program for SSI/SSDI recipients who are potentially viewed by Employment Networks as highly challenged in achieving an employment outcome.

Vagus nerve stimulation therapy: 2-year prospective open-label study of 40 subjects with refractory epilepsy and low IQ who are living in long-term care facilities

Treating seizures among patients with mental retardation/developmental disabilities (MR/DD) is difficult owing in large part to the presence of additional comorbidities and the resulting need for polytherapy. Therefore, a nonpharmacological treatment option is needed for this population. This prospective, open-label study documented the long-term outcome of 40 low-IQ (<70) patients living in long-term care facilities who received vagus nerve stimulation (VNS) therapy for pharmacoresistant epilepsy. Subjects were seen every 1 to 3 months by their neurologist (R.H.). Seizure frequency, antiepileptic medication, and quality-of-life information were documented preimplantation and quarterly thereafter through 2 years. The surgery and therapy were well tolerated. Seizures were reduced by at least 50% for 11 subjects. Antiepileptic medications were reduced from 3.3 per subject at baseline to an average of 2.3 per subject after 2 years. According to caregiver reports, overall quality of life improved for the majority of subjects; also, using the Client Development Evaluation Report (CDER), statistically significant improvements were reported at both 1 and 2 years in attention span, word usage, clarity of speech, standing balance, washing dishes, and household chores. VNS is a viable treatment option for low-IQ patients with pharmacoresistant epilepsy who are living in long-term care facilities.

Selected trends in public spending for MR/DD services and the state economies.

In this article we summarize mental retardation/developmental disabilities (MR/DD) spending since 1977, with emphasis on spending during the period 1995-2000. The change in state economic conditions, from strong growth in recent years to fiscal constraint in 2002, is also addressed. Spending data presented here are from the seventh State of the States in Developmental Disabilities (Braddock, 2002). Selected state-by-state information is also available at the study's website: http://www.cu.edu/ColemanInstitute/stateofthestates.

Decreasing Dental Resistance Among Individuals with Severe and Profound Mental Retardation

A significant number of individuals with mental retardation/developmental disabilities (MR/DD) are fearful of dental care resulting in a lack of cooperation or avoidance of dental treatment. Sedation and physical restraint are often used to help illicit cooperation among individuals with MR/DD. The following study examined the effect of a systematic desensitization procedure adapted to address the needs of individuals with severe and profound mental retardation. Participation levels of 35 individuals receiving dental desensitization were compared to a group of 28 individuals that had not received any intervention. Results indicated those receiving desensitization showed greater improvement in toleration of dental procedures than did those in the comparison group. Implications for future treatment avenues and investigations are discussed.

Quality of life of adults with mental retardation/developmental disabilities who live with family.

In this paper, we review the literature related to the quality of life of adults with mental retardation/developmental disabilities (MR/DD) who live at home with their families. We examine the nature of the relationships between adults with MR/DD and their parents and siblings, the social worlds of adults with MR/DD, age-related functional and health issues that affect their quality of life, the range of services and supports provided to them, and familial efforts to plan for their continued well-being when parental care is no longer viable. Individual characteristics associated with these dimensions and/or more compromised quality of life profiles are identified. The paper concludes with recommendations for expanded research on the quality of life of adults with MR/DD who live in the parental home, a topic which has received markedly less attention than the quality of life of adults who live in publicly supported residential settings. MRDD Research Reviews 7:105-114, 2001.

Introduction

Those with an interest in the aging of adults with mental retardation/developmental disabilities (MR/DD), are well aware of the growth of this sub-population. Not only have services had to expand or be created to meet this need, but professionals and researchers have responded through books, monographs, and journals. As Sutton (chapter five) notes, The past decade has seen an explosion in published research and practice approaches.