Answered Questions: Monthly News for the Disability Community – January 2017

Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need.

NIDILRR Projects:

The Community for All Project to Develop a Series of Six Online Toolkits to Improve Community Living and Participation for People with Intellectual and Developmental Disabilities (90DP0068) is a NIDILRR-funded, English language project that is developing a toolkit for self-advocates, families, professionals, and policymakers designed in six parts to help improve community living and participation for people with intellectual and developmental disabilities (I/DD). The sections include such topics as deinstitutionalization for all; self-advocacy and choices; community participation; lifelong education and learning; family; and digital communities. The toolkits are made up of downloadable materials, a website, and an app.

Partnering with People with Intellectual Disabilities to Address Violence (90IF0057) is a NIDILRR-funded, English language project that is conducting a randomized, controlled evaluation of an interpersonal violence (IPV) group prevention program that is designed to meet the unique needs of people with intellectual disabilities (ID). Domestic violence and sexual assault victim programs that are community-based are effective for victimized women, but often do not address disability-related abuse nor do they offer accessible services for IPV victims with disabilities. People with ID are at a high risk of experiencing IPV. The program studied in this project, A Safety Awareness Program for Men and Women with Intellectual Disabilities (ASAP), draws upon research findings on violence against people with disabilities, prior work on a safety awareness group program, and the strengths of a community-based participatory approach. This program is made up of eight weekly informational sessions. Session topics include self-advocacy, self-care, healthy relationships, and community resources. Each session includes interactive activities that help enhance auto-efficacy and skills related to safety.

Research:

Self-determination among transition-age youth with autism or intellectual disability: Parent perspectives (English) (NARIC Accession Number J67832) describes a study that examined the views of 68 parents of the self-determination skills and capacities of their young adult children with autism disorders and intellectual disabilities between the ages of 19 and 21. The study found that parents placed a high value on the importance of all component skills, such as choice-making and self-advocacy skills, that are associated with enhanced self-determination. However, the study also found that parents felt that their young adult children often did not perform these skills well. Analyses of the data suggest that the variance in the overall rating of a child’s performance of these skills and self-determination capacity in general was due to their parents’ perceptions of the severity of their children’s disabilities. However, the parents who felt that their children’s disabilities were less severe, rated their children as having better performance on both measures of self-determination.

Critical issues in intellectual and developmental disabilities: Contemporary research, practice, and policy (NARIC Accession Number R09389), a book in English published by the American Association on Intellectual and Developmental Disabilities (English), provides a review of what is known about key areas in the field of I/DD. The review includes an analysis of critical areas that touch the lives of people with I/DD, including education; employment and economic self-sufficiency; self-determination and self-advocacy; social inclusion; supports and services; and workforce issues.

Education:

Effects of the CD-ROM version of the self-advocacy strategy on quality of contributions in IEP meetings of high school students with intellectual disability (NARIC Accession Number J66819) describes, in English, a study that examined how the CD-ROM version of the Self-Advocacy Strategy affected the quality of contributions of several high school students with intellectual disabilities in their Individual Education Plan (IEP) meetings. The results of this study indicate that there is a functional relationship between the use of the CD-ROM version and the quality of contributions made by the students in their IEP meetings. The article also describes the implications for practice and recommendations for future research.

Health:

Guidelines for dementia-related health advocacy for adults with intellectual disability and dementia: National task group on intellectual disabilities and dementia practices (NARIC Accession Number J70698) is an article in English that presents the National Task Group on Intellectual Disabilities and Dementia Practices’ guidelines and recommendations for the preparation of and assistance in dementia related health advocacy. Adults with intellectual disabilities (ID) are living longer; which, not only indicates the effects of improved health care and quality of life, but also more adults with ID are experiencing age health problems related to age and are showing signs and symptoms of cognitive impairment and decline, some of which is due to dementia. The guidelines discussed in this article are the result of the national task group’s examination of the challenges faced by people aging with ID and their caregivers. They set out a way to prepare caregivers, enable augmented interactions with healthcare providers, and raise awareness and enable self-advocacy for health treatments.

Intimacy and Sexuality:

“Remember our voices are our tools:” Sexual self-advocacy as defined by people with intellectual and developmental disabilities (NARIC Accession Number J73476) describes a study that examined how people with I/DD experience and define sexuality in the context of their identities as self-advocates. Analysis of data gathered from 35 adult self-advocates with I/DD showed that self-advocates defined sexual self-advocacy in such a way as to include knowing and respecting themselves, respect for others, choices, speaking up, having their rights respected, healthy relationships, interdependence, and getting information. They also shared ideas on what would help facilitate the increase of their sexual self-advocacy such as removing systemic barriers, educating others, increasing access to information and sexual health services, expanding access to counseling, and developing opportunities for sexual expression.

Resources:

  • Autonomy and Independent Living Training: A General Guide (Down España – Spain) – This general guide from Down España, an organization for people with Down syndrome in Spain, provides general training including information on new approaches, contexts, and references, along with modules on communication, self-determination and social inclusion, and independent living abilities. It also includes an itinerary that can be individualized for self-advocacy and how to collaborate with families and schools.
  • Self-Determination: A General Perspective (reSources, Vol. 18, No. 1 – California Deaf-Blind Services) – This issue of reSources from California Deaf-Blind Services begins by describing different scenarios that show different possibilities for self-determination. It continues with a definition of self-determination and describes the eight key components that continuously change so that they become more sophisticated and complex as time goes on. These components include selections, making decisions, problem solving, self-advocacy, and independent living skills. The author of the article provides a brief history of how people with disabilities have been viewed by society. Finally, the author asks the reader to think about the scenarios at the beginning of the article and how society can support people with disabilities in their own self-determination.
  • Finding Your Voice: Self-Advocacy and Self-Determination (NARIC Spotlight Blog – USA) discusses the importance of self-advocacy and self-determination as skills for people with disabilities so that they gain access to the supports, care, equipment, and services they need. The post goes on to define self-determination and self-advocacy and provides resources from the NIDILRR community and beyond. The post ends with a list of organizations that deal with self-advocacy and self-determination. Also available in Spanish.
  • Making Your Way in the World – Resources for Young People with DS and Their Families (NARIC Spotlight Blog – USA) celebrates Down Syndrome Awareness Month by discussing resources from the NIDILRR community and beyond that help young people with Down syndrome and their families find their voice, plan their future, and take charge of their health. The blog post also discusses things like ABLE Accounts, siblings, organizations like The Arc and the National Down Syndrome Society, and a 5 part series from the Minnesota Star Tribune called “A Matter of Dignity”. Blog post is available in Spanish.

Further Research:

About Answered Questions:

Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned below is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked. This month’s question is: What do self-advocacy and self-determination mean for people with intellectual and developmental disabilities (I/DD)? This edition of Answered Questions includes items that discuss online toolkits that help improve community living and participation, including self-advocacy; self-advocacy and preventing violence towards people with I/DD; discuss sexual advocacy as described by people with I/DD; describe the parents’ view of the self-advocacy and self-determination skills of their children with autism and intellectual disability; describe the effects of the CD-ROM version of the self-advocacy strategy for high school students with intellectual disabilities attending their IEP meetings; critical issues such as self-advocacy and economic self-sufficiency for people with I/DD; and dementia-related health advocacy guidelines and recommendations for people with intellectual disabilities.

About mpgarcia

I'm the Bilingual Information/Media Specialist at NARIC.
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