AUCDigest

January 22, 2008 • Volume 8, Number 1

RESOURCES

Network Related Resources

CAC Orientation Curriculum Now Available in a Second Spanish Version. The purpose of this curriculum is to provide University Centers for Excellence in Developmental Disabilities (UCEDDs) with resources that will assist in the orientation of members of their Consumer Advisory Committees (CACs). The curriculum is meant for use by a CAC leader and/or UCEDD staff/Director to employ with potential, new, or existing CAC members as a way to introduce them to their role in advising the UCEDD.

 

Indiana Institute on Disability & Community (UCEDD) Education Policy Brief: Improving School Climate and Student Behavior: A New Paradigm for Indiana Schools. This eight-page Education Policy Brief presents common discipline practices in schools and discusses current Indiana discipline data. The brief examines school-wide Positive Behavior Support (PBS) and its implementation nationally. The brief presents possible PBS implementation recommendations for Indiana educators and policymakers to consider as a way to shift the paradigm of school discipline. Contact Sandi Cole, Center Director, or Sandy Washburn, Research Associate, at 812-855-65089 for more information.

Resources from or Sponsored by the Maternal & Child Health Bureau

• Early Childhood Comprehensive Systems Overview and Policy Issues (November 27, 2007 Webcast). An overview on Project THRIVE and some of the findings and lessons learned. Also, information on another National Center for Children in Poverty project called "improve the odds" with private foundation support was discussed.
• Eliminating Disparities in Perinatal Health Technical Assistance (November 13, 2007 Webcast). This webcast was a report on what the Healthy Start program is, current funding opportunities, who are eligible, how to apply, critical application requirements, deadlines, how federal funds can be used, and other federal policies. Contacts and resources for more information were given.
  
• Leadership Skills Development Series. The Maternal and Child Health Leadership Skills Development Series (MCHLDS) brings leadership concepts to life in an MCH context, allowing you to conduct your own training sessions, within your own time frames and in your own settings with small groups.
• Knowledge Path: Children and Adolescents with Emotional, Behavioral, and Mental Health Challenges. This resource offers a selection of current, high-quality resources about children and adolescents with emotional, behavioral, and mental health challenges. The path identifies tools for staying abreast of new developments in mental health care and for conducting further research.

Resources from the Georgetown University Center for Child and Human Development (DC UCEDD)

• Early Childhood Mental Health Consultation: An Evaluation Tool Kit. This web-based resource combines a brief review of the literature and current research addressing the effectiveness of early childhood mental health consultation with guidance for designing and implementing program evaluation.
• And the Journey Continues...This monograph was designed to offer insights and lessons learned by the NCCC during the past 13 years. Additionally, the National Center for Cultural Competence is pleased to present, in this monograph, stories from the journeys of State Title V Children with Special Health Care Needs (CSHCN) programs.

Resources from the Elizabeth M. Boggs Center (NJ UCEDD)

• Enhancing Early Intervention for Parents of Young Children with Autism Spectrum Disorders: Information, Strategies, & Resources, by Dr. E. Richard Blumbergand Ella Hurley presents the knowledge and skills caregivers need to work with young children with autism. Using straightforward language, real-life examples, and practical skill building exercises, this workbook helps caregivers put into use a wide range of scientifically based information and strategies.
  
• Resource Contacts Regarding Disability & Spirituality. Following a workshop at the 2007 AUCD Annual Conference on collaborative projects with seminaries and faith networks, Bill Gaventa and others from UCEDDs in Tennessee, Arkansas, and Kentucky are forming an electronic list of people from UCEDDs around the country who are interested in issues, projects, and resources related to spirituality and disability. If you would like to be on that list, please email Bill Gaventa.

Resources from the Nisonger Center (OH UCEDD/LEND)

• Lives Worth Saving is the nation's largest program dedicated to providing outreach and technical assistance to people with intellectual and developmental disabilities (IDD) and their families on solid organ transplantation as well as conducting research. Its national hotline serves as a resource for information on transplantation and organ donation: 800-637-2316. Contact: Linda Jones, RN, 614-688-8040.
• Williams Syndrome Clinic serves children and adults with Williams Syndrome and their families. Similar to the Developmental Disabilities Clinic, Nisonger faculty partner with disciplines from Nationwide Children's Hospital in an interdisciplinary setting. Families may also attend regular support groups. Contact: Dr. Marilee Martens, 614-688-3112.
• Young Adult Transition Corps is an AmeriCorps program that provides community service, community access and social network-building activities for transition-aged youth with disabilities. Contact: Jillian Ober, 614- 247-6392.

Resources from the Partners associated with the Institute on Community Integration (MN UCEDD)

• Summary of the Research on the Effects of Test Accommodations: 2005-2006 (NCEO Technical Report). This report from the National Center on Educational Outcomes summarizes test accommodations research published from 2005-2006, covering 32 published research studies. It identifies promising directions in research and provides suggestions for future studies.
• Defects: Special Education in the New National Education Data System (Brief). This In-Depth Policy Analysis from the National Association of State Directors of Special Education describes the US Department of Education's (DOE) development of a repository for K-12 education data, Defects. It summarizes interviews regarding seven state's submission of special education data via Defects.

New Products and Resources from National Center on Physical Activity and Disability, in association with Institute on Disability and Human Development (IL UCEDD)

• Planning for Inclusion: Implementing an Accessibility Management Program in a Parks and Recreation Business Model. This National Center on Accessibility document describes how people with disabilities are still experiencing significant barriers at recreation facilities and parks and offers insight into how an accessibility management program can be successful.
• Non-Traditional Exercise as a Way of Preventing Secondary Conditions. A column examines yoga for people with multiple sclerosis (MS) and the effect it has had in reducing the secondary condition of fatigue.
  
• NCPAD Video Corner: Parkinson's Group Class (Video-enabled Factsheet). This video-enabled factsheet provides the second set of video clips demonstrating exercises appropriate for persons with Parkinson's disease using participants from the Integrated Exercise for Parkinson's class from the Rehabilitation Institute of Chicago (RIC).
  

Research to Know

Autism Risk Higher in People with Gene Variant - Difference in Gene Appears to Pose More Risk When Inherited from Mothers. Scientists have found a variation in a gene that may raise the risk of developing autism, especially when the variant is inherited from mothers rather than fathers. The gene, CNTNAP2, makes a protein that enables brain cells to communicate with each other through chemical signals and appears to play a role in brain cell development. Previous studies have implicated the gene in autism, and in this study researchers were able to link a specific variation in its structure to the disease.

Other Resources

Mental Health Resources

• Entering the World of Work: What Youth with Mental Health Needs Should Know about Accommodations? The Department of Labor factsheet provides information on disclosure, accommodations and examples of reasonable accommodations for youth with mental health needs entering the workforce.
• What Makes a Difference for Transition Age Youth with Mental Health Needs? This Power Point presentation (PDF format) provides a comparison of European American and African American perspectives on community integration.
• SAMSHA Report to Congress Resilience and Support (Report). This recent report to Congress from the Substance Abuse and Mental Health Services Administration (SAMHSA) encourages evidence-based programs that offer family support.
• Substance Abuse Resources Now Available in Several Languages. The Multi-Language Initiative of the Center for Substance Abuse Treatment has released several substance abuse-related publications for speakers of languages other than English. Select publications are available in Spanish, Russian, Navajo, Chinese, Korean, and Vietnamese.
• New Publications from the National Institute of Mental Health on Eating Disorders. This booklet describes symptoms, causes, and treatments of eating disorders and where to find information and help.
• Certificate Program in Primary Care Behavioral Health. The University of Massachusetts Medical School and the Department of Family Medicine and Community Health announces the next session of its Certificate Program in Primary Care Behavioral Health beginning January 25, 2008. For further information, contact Melissa McLaughlin.

Home and Community Based Services Resources

• Report on Administration of Mental Health Services by Medicaid Agencies. This report provides a state-by-state analysis of how Medicaid agencies are exercising their responsibilities for mental health services.
• CMS Direct Service Workforce Demonstration Promising Practices in Marketing, Recruitment and Selection Interventions. This report identifies promising practices in direct service worker marketing, recruitment, and selection across the CMS grantees.
• Expanding the Registry Concept: Creating Access to Care for Consumers & Employment for Care Workers. Presentation on worker registries and state examples.
• Funding Sources Successfully Used by States to Support Development of Integrated, Affordable, and Accessible Community Housing. This guide offers a quick reference on housing resources that can be used to create integrated, affordable, and accessible housing and basic information on how to use these resources.
• Medicaid Home and Community-Based Service Programs: Data Update. This report presents a summary of the main trends to emerge for the three Medicaid HCBS programs and the results of a survey of policies such as eligibility criteria and waiting lists.
• Personal Assistance Services Cooperatives: Final Report. This report presents case studies of seven personal assistance cooperatives, describes advantages of consumer-run cooperatives, identifies funding issues and sources, and presents considerations for those contemplating starting.
• Building on the Ticket: A New Paradigm for Investing in Economic Self-Sufficiency for People with Significant Disabilities. Final report from the Ticket to Work Panel to the President and Congress. Includes five recommendations for changes to SSA programs.

Guides, Reports, & Factsheets

• Twenty-Seventh Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, Parts B and C (Report). The US Department of Education annual report to Congress on the progress made toward the provision of a free appropriate public education to all children with disabilities. Volume 1 of the report focuses on the children and students being served under IDEA. Volume 2 contains state-level data profiles.
• New Bright Futures Guidelines from the American Academy of Pediatrics. The 3rd edition of Bright Futures: Guidelines for Health Supervision of Infants, Children and Adolescents contains priorities for each of the 31 recommended health visits.
• Resource Guide for Serving Refugees with Disabilities. This resource is written as a how-to for caseworkers and advocates who serve refugees with disabilities.
• Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes-Implications for the System (AAP Report). Advances in newborn screening technology, coupled with recent advances in the diagnosis and treatment of rare but serious congenital conditions that affect newborn infants, provide increased opportunities for positively affecting the lives of children and their families.
• Special Needs Planning Guide: How to Prepare for Every Stage of Your Child's Life (Brookes Publishing, 2007). Included is a CD-Rom which contains a Financial Planning Timeline and a printable Letter of Intent that lets parents communicate key information, concerns, and desires to future caretakers.
• Developmental Screening in Primary Care: The Effectiveness of Current Practice and Recommendations for Improvement (Commonwealth Fund Report). The report finds that developmental delays in early childhood are significantly under-identified by primary care providers.
• National Commission for Quality Long-Term Care Report Recommends Adequate Supports for Family Caregivers. The National Commission for Quality Long-Term Care released From Isolation to Integration: Recommendations to Improve Quality Long-Term Care. The recommendations focus broadly on quality of care, workforce issues, technology and financing long-term care.
• Mathematica Releases Report of the TTW Program. Mathematica Policy Research recently released an evaluation of the Ticket to Work Program which found that the Program did not have a significant impact on the way VR agencies do business or on the practices of employment networks in the community

Additional Resources

• Disability and Health Journal. The American Association on Health and Disability (AAHD announces the launch of the Disability and Health Journal, which will be the official Journal of AAHD. The Journal will be published quarterly - in print and electronically, with the first issue scheduled for February 2008.

• Eligibility for Benefits Update: How to Appeal a Decision on Your Social Security Disability Claim Online. This is the starting point to request a review of SSA's medical decision about your eligibility for disability benefits.
• Involving Families as Advisors Toolkit. The Center for Children with Special Health Care Needs developed this toolkit on the assumption that the involvement of patients and their families in the design, implementation, and evaluation of pediatric healthcare services, programs, and policies makes a significant difference.
• This is Health Care Transition (Video). The Institute for Child Health Policy (ICHP) at the University of Florida developed this video in order to help youth and young adults with chronic health conditions and their families move from pediatric to adult-oriented health care.
• PEPNet Listserv. The PEPNet listserv is a forum for individuals interested in discussing topics related to postsecondary and transition education for students who are deaf or hard of hearing.
• Inclusion of Assistive Technology in the Curricula of Health Professional Training Programs (Journal of Allied Health; Winter 2007). The study described in this article examined the extent to which AT and AT services were included in the curriculum content of academic programs that provide training for professionals in the fields of occupational therapy, physical therapy, special education, and speech-language pathology.
• Self Advocates Becoming Empowered (SABE) SELF ADVOCACY NATION Newsletter. SABE is a national self-advocacy organization.

New Websites

United We Ride (UWR). UWR is a Federal interagency initiative aimed at improving the availability, quality, and efficient delivery of transportation services for older adults, people with disabilities, and individuals with lower incomes.

Early Childhood Family Support. This fall the Beach Center on Disability at the University of Kansas launched an innovative, online communication tool called a Community of Practice (CoP) so that families of children with cognitive disabilities, the professionals who serve them, researchers and policy makers could learn from each other.

AccessibleEmployment.org. This resource is designed to provide employers with one central place to post employment positions and search resumes of qualified candidates with disabilities. The website was started by the New Jersey Business Leadership Network.

Assessment and Accountability Comprehensive Center. The AACC implements, evaluates, and improves assessment and accountability systems so that states and districts can reach the No Child Left Behind goal of academic proficiency for all students. It is operated by WestEd in partnership with National Center for Research on Evaluation, Standards, and Student Testing.

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