Regulatory reform: a report to the Governor and the General Assembly from the Illinois Department of Mental Health and Developmental Disabilities as required under Senate Joint Resolution 180.

Cover title.

The Affirmative Action Plan of the Illinois Department of Mental Health and Developmental Disabilities.

Title from introduction.

Intellectual and Developmental Status in Children With Hyperphenylalaninemia and PKU Who Were Screened in a National Program

Background: Hyperphenylalaninemia (HPA) and Phenylkeonuria (PKU) are metabolic errors caused by deficiency of phenylalanine hydroxylase enzyme, which results in increased level of phenylalanine. This increase is toxic to the growing brain. Objectives: The purpose of this study was to compare the intellectual and developmental status in HPA and PKU children with normal population in national screening program. Patients and Methods: In a historical cohort study, 41 PKU patients who had the inclusion criteria and 41 healthy children were evaluated. Wechsler preschool and primary scale of intelligence-3rd edition (WPPI-3) was used in order to assess the intellectual status of children 4 years and older and Ages and stages questionnaire (ASQ) was used to assess the developmental status of children 5 years and younger. Results: In intellectual test comparison, the two groups showed significant difference in Wechsler’s performance intelligence score and some performance subscales (P-value < 0.01). In comparison of developmental status, no significant difference was observed between the two groups (P-value > 0.05). Conclusions: Even with early diagnosis and treatment of PKU patients, these children show some deficiencies intellectually compared to normal children. This study emphasizes on necessity for screening intellectual and developmental status of PKU patients so that effective medical or educational measures can taken in case of deficiencies.

Transition staff discuss sex education and support for young men and women with intellectual and developmental disability

Background Young people with intellectual and developmental disability (IDD) get information, education, and support about social and sexual relationships from different sources. Staff are often involved in providing this education and support. We explored if and how this support is offered to young people transitioning to adulthood.Methods Focus groups were conducted with 17 staff from 3 transition services to illicit information about their experiences providing this education and support.Findings A key theme was that staff are “reluctant counsellors.” Although staff provided social and sexual education, they reported being underprepared and relied primarily on their own values as guidance. They did this in full recognition that transition services filled a social gap for participants, blurring the lines between education and social support.Conclusion Further research is needed to inform sexuality and relationship policy and practice during transition to adulthood, as this is a key learning and developmental time for young adults with IDD.

Motivation in children with intellectual disabilities

This article addresses the questions of whether there are motivational deficits in children with intellectual disabilities, whether those with Down syndrome are more likely to display motivational deficits, and how motivation might be supported. The available literature that has examined motivation in children with intellectual disabilities was considered and integrated to address the questions outlined above. There is little published research on this vital topic. Reports on motivational problems differ depending upon the method of data collection. Observational studies using structured tasks generally reveal no differences between children with intellectual disabilities and typically developing children matched for mental age. When reports of parents or teachers are used, children with intellectual disabilities appear to have deficits in motivation. No evidence was found for a particular deficit in children with Down syndrome. The results of this review challenge the perception that children with intellectual disabilities will generally have motivational problems, although it is clear that motivation is a complex construct, not easily examined in those with intellectual disabilities. Strategies for addressing problems and for maintaining motivation, based on theory and evidence, are provided. These strategies are applicable across a range of settings including the home, school, and more adult-oriented services.

Parenting and the behavior problems of young children with an intellectual disability: Concurrent and longitudinal relationships in a population-based study

We examined parenting behaviors, and their association with concurrent and later child behavior problems. Children with an intellectual disability (ID) were identified from a UK birth cohort (N  =  516 at age 5). Compared to parents of children without an ID, parents of children with an ID used discipline less frequently, but reported a more negative relationship with their child. Among children with an ID, discipline, and home atmosphere had no long-term association with behavior problems, whereas relationship quality did: closer relationships were associated with fewer concurrent and later child behavior problems. Increased parent-child conflict was associated with greater concurrent and later behavior problems. Parenting programs in ID could target parent-child relationship quality as a potential mediator of behavioral improvements in children.

Ethics in sexual behavior assessment and support for people with intellectual disability

Sexuality is an issue of equality, rights, and ethics, especially when it comes to the sexuality of people with intellectual and developmental disabilities. This paper offers a discussion of ethics related to the assessment and intervention supports of sexual behavior in people with intellectual and developmental disabilities. A brief history of sexuality and disability is presented. Issues of sexual abuse of people with intellectual and developmental disabilities and the laws related to sterilization, pornography, sexual rights, and consent are explored. Finally, specific ethical concerns related to intervention by behavior analysts in the realm of sexual behavior are examined.

Masculinity theory in applied research with men and boys with intellectual disability

Researchers in intellectual disability have had limited theoretical engagement with mainstream theories of masculinity. In this article, the authors consider what mainstream theories of masculinity may offer to applied research on, and hence to therapeutic interventions with, men and boys with intellectual disability. An example from one research project that explored male sexual health illustrates how using masculinity theory provided greater insight into gendered data. Finally, we discuss the following five topics to illustrate how researchers might use theories of masculinity: (a) fathering, (b) male physical expression, (c) sexual expression, (d) men's health, and (e) underweight and obesity. Theories of masculinity offer an additional framework to analyze and conceptualize gendered data; we challenge researchers to engage with this body of work.

Diabetes in people with an intellectual disability : a systematic review of prevalence, incidence and impact.

To establish the prevalence and incidence of Type 1 and Type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities.

Family Futures Planning : training, support, and advocacy program for adults with developmental disabilities and their families : family member's manual /

"Funded by: Illinois Council on Developmental Disabilities, Chicago Association for Retarded Citizens, Rehabilitation Research Training Center on Aging and Developmental Disabilities (National Institute on Disability and Rehabilitation Research Grant #H133B980046) in the Department of Disability and Human Development at the University of Illinois at Chicago."

Observational assessment and maternal reports of motivation in children and adolescents with Down Syndrome

Despite a lack of consistent empirical evidence, there has been an ongoing assumption that intellectual disability is associated with reduced levels of motivation. The participants in this study were 33 children with Down syndrome ages 10–15 years and 33 typically developing 3–8-year-old children. Motivation was measured through observational assessments of curiosity, preference for challenge, and persistence, as well as maternal reports. There were no significant group differences on motivation tasks, but mothers of children with Down syndrome rated their children significantly lower on motivation than did parents of typically developing children. There were some intriguing group differences in the pattern of correlations among observations and parent reports. The findings challenge long-held views that individuals with intellectual disability are invariably deficient in motivation.

Gendered service delivery : a masculine and feminine perspective on staff gender

Despite acknowledgement that paid caregivers have a significant impact on the lives of people with intellectual disability, the subjective experience of staff gender is rarely considered in research. Qualitative data from a study on the sexual health needs of men and boys with intellectual disability is presented. We designed this study to determine what impact staff gender has on the sexual health needs of men and boys with intellectual disability. Findings suggest that although staff traverse the same geographies of care, they do it in uniquely gendered ways. Staff gender is an important consideration when dealing with sexual health matters and can enhance the type and quality of relationships between people with intellectual disability.

An effective program design to support older workers with intellectual disability to participate individually in community groups

The foreshadowed increase of older people with intellectual disability has become a reality in many developed countries. As these adults age, improved quality of life can be achieved through applications of conjoint policy aims of inclusion and participation. A transition-to-retirement (TTR) program developed for employees of a large multisite disability employment service in Sydney, Australia, used these aims to effect successful partial retirement. The authors describe the program logic of the TTR, detailing its conceptual components as the first step to enabling it to be tested and replicated in other settings. The TTR program has three components: promoting the concept of retirement, laying the groundwork for inclusion of would-be retirees with intellectual disability in the community, and constructing the reality. The third component comprised five stages: planning, locating a group, mapping new routine, recruiting and training mentors, and monitoring and ongoing support. The project's participants were 24 older employees, who replaced 1 day a week of work with membership of a community group and were supported by mentors who facilitated involvement of the participants in their group. Data collected provided information on the implementation of the program, the time and costs expended, and challenges encountered. Key to the model was a coordinator, skilled in generic case management and specific disability interventions (such as active support), who collaborated with others to manage the program. The authors note that by detailing the program logic underpinning the TTR program, they have exposed the hidden work of supporting meaningful inclusion of people with intellectual disability in community groups and added to the limited stock of evidence-informed programs in this area. © 2014 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.

Annual plan for Mental Health Services, Developmental Disabilities Services.

As mandated by the Mental Health and Developmental Disabilities Administrative Act (20 ILCS 1705).