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AUCDigest

July 19, 2006 • Volume 6, Number 63


Forging New Partnerships for New Challenges Through Research, Education and Service

October 29-November 1, 2006


RESOURCES

Network Related Resources

Policy Brief: Cultural and Linguistic Competence in Family Supports.  The policy brief was developed by the National Center for Cultural Competence, in association with the Center for Child and Human Development (DC UCEDD).  This Web document addresses the issues of cultural and linguistic competence in providing family supports to children and youth with special health care needs and their families.  Numerous vignettes illustrate the policy issues.  In addition, links within the document connect the reader with more in-depth information in the form of PowerPoint slides.

Tip Sheets for First Responders and Texas Resources for Services and Supports.  Adapted by the Texas Center for Disability Studies (TX UCEDD) and the Texas Developmental Disabilities Network from material originally developed by a consortium in New Mexico led by the Center for Development and Disability (NM UCEDD); this booklet resource contains quick, easy-to-read sheets with information on how to assist persons with a wide range of disabilities.   They are designed (ring bound and laminated) for use by first responders and other emergency personnel who may be unfamiliar with people with these and similar disabilities, and are unsure how to interact with them. 

MCHB Resources

  • New Edition of the Infant Mortality Knowledge Path.  This electronic resource guide offers a selection of current, high-quality resources that analyze data, describe public health campaigns and other prevention programs, and report on research aimed at identifying causes and promising intervention strategies.
  • Strong Health: Believe in Better Health (Toolkit).  Strong Health is a network of doctors, nurses, allied health professionals, and hospitals located in Rochester, NY, working in concert with customers and communities to create enhanced quality of life through research, education, and services. Strong Health has developed tools to help prevent increase fitness, reduce obesity, decrease illness, and lower the risk of disease.
  • Partnerships Between Primary Health Care and Mental Health and Substance Abuse Services for Young Children and Their Families.  This Substance Abuse and Mental Health Services Administration-funded, Web-based resource features eight innovative medical home practices that integrate behavioral health screening for the whole family, facilitate referrals to community services, and offer follow up care.

Disaster Preparedness Planning Guide.   The A.J. Pappanikou Center (CT UCEDD) and Developmental Disabilities Network is pleased to announce the publication of A Guide for Including People with Disabilities in Disaster Preparedness Planning.   Written specifically for Connecticut residents, planners, and first responders, the guide includes detailed information on the issues that are critical to the health and safety of people with disabilities in a disaster.   Two unique features set this publication apart:

  • Vignettes follow two fictional characters, Elizabeth and Pete, through different emergency management stages of preparedness, mitigation, response, and recovery, bringing the issues to life.
  • "Tips and Tools for People with Disabilities," (Appendix A) features easy-to-use information, checklists, and worksheets that can make disaster preparedness planning easier.

For more information or to order a copy of the A Guide for Including People with Disabilities in Disaster Preparedness Planning, contact Jessica Jagger at 860-679-1584.

New Products and Resources from WY UCEDD's Victims of Crime with Disabilities Resource Guide:  Every month, new products and services are added to the Wyoming Institute for Disabilities (UCEDD) Resources Database.  Review the following resources:

  • Paper Suggests New Model for Intimate Partner Violence Against Women with Disabilities.  A researcher from Villanova University College of Nursing has been exploring the abuse of women with physical disabilities. Based on interviews with 25 women, the article reports that the often used "Cycle of Violence" model did not accurately depict the experiences of the participants. Citation: Copel, L. (2006). Partner Abuse in Physically Disabled Women: A Proposed Model for Understanding Intimate Partner Violence. Perspectives in Psychiatric Care, (42) 114-129.
  • Report: At Least One-Third of All Children in Foster Care Have Disabilities.  A report released by United Cerebral Palsy and Children's Rights reveals that at least one-third of the more than 500,000 children and youth in American foster care systems today may have disabilities. The report, titled "Forgotten Children: A Case for Action for Children and Youth with Disabilities in Foster Care," asserts that state foster care systems have largely failed to address the unique needs of children with disabilities and the families who care for them.
  • Family Violence Prevention Fund Soliciting Papers on Health Disparities and Violence Prevention. For the upcoming issue of The Family Violence Prevention and Health Practice ejournal, the Family Violence Prevention Fund is now soliciting brief reports and feature articles that investigate the intersection between violence prevention initiatives and efforts aimed at reducing health disparities among poor people, minorities, and other underserved people.  For further information about submitting manuscripts, contact Julie Varghese or visit the Family Violence Prevention Fund site.
  • Video: Access to Justice. This film was designed to assist judges and other professionals within the criminal justice system about the challenges faced by people with disabilities who are victims of domestic violence or sexual assault. The film features three women with disabilities who relay their stories of their struggle to end the cycle of violence.
  • Book: Care Planning and Delivery in Intellectual Disabilities Nursing.  The book explores how nurses can enable people with intellectual disabilities to obtain good quality care, encouraging them to use the best possible guidance to plan their professional care, and to reflect on their practice. It includes chapters on care planning and delivery in residential, mental health, and forensic settings.
  • Video and Guidebook: Meeting the Needs of Underserved Victims.  The video presents the stories and insights of five crime victims.  Included is discussion by a rape survivor who is deaf about her feelings of isolation as she attempted to navigate the criminal justice system.  The final segment discusses the host of problems facing victims with disabilities and the unique challenges for service providers working with these populations.
  • Online Resource:  Police Response to People with Disabilities. The resource is designed to assist law enforcement officers interact more effectively with people with disabilities.  The resource addresses law enforcement situations involving people who have mobility disabilities, mental illnesses, mental retardation, epilepsy or seizure disorders, speech disabilities, deafness or hard of hearing, and blindness or low vision.

Resources from NCSET Partners/ Institute on Community Integration (MN UCEDD)

  • Impact: Feature Issue on Parenting Teens and Young Adults with Disabilities (Newsletter).  This issue of Impact, a publication of the Institute on Community Integration, explores strategies for families of youth with disabilities to consider in navigating the transition years, and shares stories of those who are in the middle of this life change and those who have come out the other side successfully.
  • Dealing with Flexibility in Assessments for Students with Significant Cognitive Disabilities (Report).  This report from the National Center on Educational Outcomes examines the tension between flexibility and standardization in assessments for students with significant cognitive disabilities.  Alternate assessments based on alternate achievement standards are necessarily less standardized than general assessments because of how the students who participate in these assessments learn and demonstrate their learning.  As states develop alternate assessments, they must articulate and defend their choices.
  • How to Develop State Guidelines for Access Assistants: Scribes, Readers, and Sign Language Interpreters (Guide).  A manual covering the seven key features for developing or revising state guidelines for access assistants that can help ensure that each state¹s guidelines reflect stakeholder involvement and collaboration, represent a meaningful purpose, and provide an accurate picture of what is currently available within the state.
  • Characteristics of Aging Caregivers (Data Brief).  A brief summarizing findings from the National Health Interview Survey Disability Supplement (NHIS) conducted by the US Bureau of the Census, National Center on Health Statistics in 1994 and 1995.  It examines characteristics and outcomes for family members, ages 55 and older, who shared households with persons with intellectual and/or developmental disabilities or functional limitations only. This brief estimates the population of aging caregivers and presents logistic regressions examining the factors that influence selected outcomes for those caregivers.

NCPAD Resources:  National Center on Physical Activity and Disability is associated with the Institute on Disability and Human Development (IL UCEDD)

Research Based Studies

National Trends in the Outpatient Treatment of Children and Adolescents  Olfson, M., Blanco, C., Liu, L, Moreno, C., & Laje, G. (2006). National Trends in the Outpatient Treatment of Children and Adolescents with Antipsychotic Drugs. Archives of General Psychiatry, (63) 679-685.  Objective:  To examine national trends and patterns in antipsychotic treatment of youth seen by physicians in office-based medical practice. 

Resistance Training Improves Gait Kinematics in Persons with Multiple Sclerosis. Gutierrez, G. M., Chow, J. W., Tillman, M. D., McCoy, S. C., Castellano, V., & White, L. J. (2005). Resistance training improves gait kinematics in persons with multiple sclerosis. Archives of Physical Medicine and Rehabilitation, (86) 1824-1829.  The study served to assess the effects of an 8-week resistance training program on walking ability in individuals with multiple sclerosis (MS). The authors hypothesized that following the 8-week training program, gait characteristics in persons with MS would become significantly more consistent with normal gait patterns than those that are viewed with people who are unimpaired.

Other Resources

Decision Tool: HIPAA Privacy Rule & Disclosures for Public Health - Emergency Preparedness.  The US Department of Health and Human Services published a new Web-based interactive decision tool designed to assist emergency preparedness and recovery planners in determining how to access and use health information about persons with disabilities consistent with the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule.  By helping users focus on the source of the information being disclosed, to whom it is being disclosed, and for what purpose, users will better meet the needs of the elderly or persons with disabilities in the event of an evacuation.

New Paper:  The Needs of People with Psychiatric Disabilities During and After Hurricanes Katrina and Rita: Position Paper and Recommendations.  The National Council on Disability encourages policymakers, emergency planners and people with disabilities to carefully review the paper. NCD stands ready to provide guidance to those who are ready to make their emergency plans and services more accessible to people with disabilities.  As emergency managers and policymakers create plans that seek to ensure that all people, regardless of disability, survive catastrophes such as Hurricanes Katrina and Rita, we will incorporate the principles of inclusion and nondiscrimination into our national consciousness.

New Paper: Recognition and Response: An Early Intervening System for Young Children at Risk for Learning Disabilities. The University of North Carolina's FPG Child Development Institute has recently completed a review of research that underscores the importance of recognizing and responding to critical early warning signs of learning difficulties in young children.  It advocates for a new systemic approach that can help early educators and parents ensure early school success for all children, including those at risk for learning difficulties. The paper explains that this new model, which includes such components as universal screening and progress monitoring, facilitates a seamless transition from Pre-K to kindergarten and emphasizes the importance of decision-making based on carefully targeted student data.

Medicaid Resources

  • Medicaid Long Term Care Expenditures FY 2005.  State by state data on Medicaid long-term care expenditures available for Fiscal Year 2005.
  • Medicaid HCBS Waiver Expenditures FY2000 through FY2005.  Each individual HCBS waiver is classified by population served in order to show the distribution of expenditures across the long-term care population.
  • CMS State Medicaid Directors Letter: State Flexibility in Benefit Packages.  This letter is one of a series that provides guidance on the implementation of the Deficit Reduction Act. Section 6044, State Flexibility in Benefit Packages, adds a new section 1937 to the Social Security Act. Review the options that states have to amend plans to provide alternative benefit packages to beneficiaries, without regard to comparability, state wideness, freedom of choice, or certain other traditional Medicaid requirements.
  • Deficit Reduction Act Teleconference Archive.  Review the archives of the June 28, 2006 Deficit Reduction Act teleconference with Kathy Rama and Donna Schmidt of the Centers for Medicare and Medicaid Services. The call includes discussion of section 1937 and the option of states to amend their state plan to provide alternative benefit packages to beneficiaries, without regard to comparability, state wideness, and freedom of choice or other traditional Medicaid requirements.

Reports, Guides, Fact Sheets & Manuals

  • Fact Sheet: New Requirements for Citizenship Documentation in Medicaid.  This fact sheet provides information on the new federal requirement that all U.S. citizens and nationals applying for or renewing their Medicaid coverage provide documentation of their citizenship status and examines the implications for Medicaid beneficiaries and the states. This is one of the significant changes the DRA makes to Medicaid effective July 1, 2006.
  • Nursing Home to Community Program: A Discharge Planning Manual.  This resource is a nursing home to community discharge planning manual designed primarily for use in nursing homes and may be of help to others to use in developing manuals for their communities.  It is designed to orient the long-term care providers to the nursing home discharge process by defining the roles of the key partners who are involved in returning residents to community living and to document a standard protocol for accessing and maximizing partner resources.
  • New Medicare Guide Available.  The revised edition of Medicare Basics: A Guide for Families and Friends of People with Medicare, CMS Publication #11034, revised January 2006, is now available in print. Copies can be ordered on line or call 1-800-MEDICARE.
  • Guide: Life in a Cube - Problems Experienced by Employees with Cognitive Impairments.   This guide describes potential issues that employees with cognitive impairments may face when working in a cubicle environment, some preventative measures the employer can take to minimize difficulties, and accommodations that can be made for employees who have cognitive impairments.   

Various Resources

  • Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening (Policy Statement).  Early identification of developmental disorders is critical to the well-being of children and their families. It is an integral function of the primary care medical home and an appropriate responsibility of all pediatric health care professionals. The authors recommend that developmental surveillance be incorporated at every well-child preventive care visit.
  • ACE-IT! Student Views on Expanding Academic and Career Supports for College Students with Physical and Neurological Disabilities (Webcast Archive).  On June 6, 2006, the RTC on Workplace Supports and Job Retention held a Webcast on the Academic and Career Exploration-Individualized Techniques! (ACE-IT!) program.  ACE-IT! uses a supported education approach to provide individualized services to students with disabilities.  In the Webcast, college graduates shared their experiences with the program and what services and supports were particularly useful to them as they pursued their career goals.  The Webcast also discussed how to promote success for students with physical and neurological disabilities using an array of supports.
  • Struggles Persist for Adolescent Girls with ADHD (Press Release).  As they reach their teens, girls with ADHD typically show less hyperactivity but are more at risk for delinquency, depression, substance abuse, and other problems than their peers without ADHD, this University of California, Berkeley, study found.  Lead author Stephen Hinshaw notes that the impairments affect functions critical for success in adulthood.  For parents coping with difficult teenage ADHD behavior, Hinshaw warns, adolescence can be tricky as they try to strike a balance between encouraging their daughters to stick to their treatment regiment-which may involve medication, family therapy, school supports, or a combination-and supporting their need for autonomy.
  • For Safekeeping: First Responders Autism Training Video.  This twenty-minute video demonstrates how to recognize, safely approach and communicate with individuals with autism. The program was developed by the Autism Alliance in cooperation with a nationally recognized autism expert and an active member of the Massachusetts police force.
  • Personal Care Attendant Training Program (Curriculum).  Train in-home support workers with this thoroughly researched, well organized 30-hour curriculum designed according to principles of adult learning theory. Appropriate for use by community colleges, workforce development, occupational programs, vocational training programs and private duty agencies.
  • Topical Index from the RRFC Portal.  The Regional Resource and Federal Centers Network has assembled a listing of resources on topics related to education standards, policy, and research.
  • Wrightslaw Game Plan: Smart IEPs. This tool provides a number of tutorials and checklists that will walk you through the process of writing an effective IEP step-by-step, from identifying a child's unique needs to constructing specific, measurable, time-limited goals that target areas of achievement and functional performance that are relevant to the child's needs.
  • NCWD/Youth Intersection Newsletter.  Intersection: Navigating the Road to Work is the electronic newsletter of the National Collaborative on Workforce and Disability for Youth (NCWD/Youth). The newsletter and this website offer information to improve services to youth and especially youth with disabilities.
  • 2006 Edition of the KIDS COUNT Data Book.  The Annie E. Casey Foundation released this data resource, which provides national and state-by-state profiles of America's children's health, education and economic conditions. This year's edition focuses on the role early childhood development plays in preparing children for future success.  Access their easy-to-use, powerful online database, "State Level Data Online" that allows you to generate custom graphs, maps, ranked lists, and state-by-state profiles; or, download the entire data set as delimited text files. Additionally, you can order a free copy of the Data Book.

New Websites

NIHSeniorHealth.  What causes a heart attack, and how can I reduce my risk?  What are the symptoms of a heart attack, and do I have to have all of them before calling 911?  Does having a heart attack mean that I can't do the things I enjoy doing?  The answers to these and other questions about preventing, detecting and treating a heart attack are available from this resource.  This website, which was designed especially for older adults, is a joint effort of the National Institute on Aging and the National Library of Medicine, which are part of the National Institutes of Health.

Access Board.  Section 508 of the Rehabilitation Act requires access to electronic and information technology procured by Federal agencies. The Access Board developed accessibility standards for the various technologies covered by the law. These standards have been folded into the Federal government's procurement regulations.

HRSA Cultural Competence Resources for Health Care Providers.  The page is designed to be a one-stop shop for health care providers wishing to learn about HRSA's progress in improving culturally competent health care. This user-friendly site highlights approximately 40 HRSA-supported projects on the critical subject of cross-cultural health care.

Knowbility.  Knowbility conducts trainings and information sessions to build awareness of the importance of Internet accessibility.

DO-IT Knowledge Base.  The Disabilities, Opportunities, Internetworking, and Technology (DO-IT) project at the University of Washington has created a comprehensive Web-based "Knowledge Base" database containing over 300 articles.  Users can find answers to questions about assistive technology, accessible information technology, college and career transition, universal design of instruction, student services, and other topics, as well as case studies and promising practices.

Literacy Web Resource Page.  This online resource list from NICHCY, the National Dissemination Center for Children with Disabilities, can help parents and professionals help all children reach their fullest literacy potential. Contents include Research Basics, NCLB and Reading, Teaching Reading, Beginning Reading Instruction, Reading with Older Children, Resources, Literacy and Children with Disabilities, and Reading and English Language Learners.

Teaching Every Student.  The Teaching Every Student section of the Center for Applied Special Technology's Web site supports educators in learning about and practicing Universal Design for Learning (UDL).  Sections include Ideas & Information, Tools & Activities, Community & Support, UDL Toolkits, and Model Lessons.

 

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