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AUCDigest

March 30, 2007 • Volume 7, Number 3


RESOURCES

Network Related Resources

March Issue of the ADD Update Highlights Accessible, Affordable Housing. Dr. Pat Morrissey, Commissioner of the Administration on Developmental Disabilities, speaks to the importance and the need of accessible, affordable housing in her opening message: "Without access to safe, long-term housing, individuals and families cannot fully participate in community life. Home can be a retreat and a refuge, but it also serves as the foundation for almost everything we do. Without adequate housing, health and well-being are difficult to achieve." The Institute on Disability (NH UCEDD), Indiana Institute on Disability and Community (UCEDD), Developmental Disabilities Institute (MI UCEDD), and USC University Center for Excellence in Developmental Disabilities (CA UCEDD) are highlighted for their work and dedication in the area of accessible, affordable housing.

Maternal and Child Health (MCH) Library Knowledge Path: Asthma in Children and Adolescents. This electronic guide presents a selection of current, high-quality resources about asthma in children and adolescents and the impact of asthma on homes, schools, and communities. The knowledge path also identifies tools for staying abreast of new developments in pediatric asthma research. Separate sections identify asthma information for families, information about asthma and environmental triggers, and resources about asthma management in school.

National Center for Cultural Competence (in association with the Georgetown University Center for Child and Human Development – DC UCEDD) Publishes A Guide to Family-Centered Culturally Competent Care. The movements to advance family-centered care and cultural and linguistic competence have often evolved along parallel tracks. This fact is well documented in the early definitions of family-centered care in the literature (Bishop, Woll, & Arango, n.d.). Although these definitions reference honoring cultures, cultural diversity, and family traditions, little emphasis was placed on policies and structures necessary to translate this philosophy into family-centered practice. This review encompassed the period of 1993-2003 and included 250 journal and other resources and media. The authors found that little mention of cultural competence was made in family-centered care materials (Arango & McPherson, 2005). The resource is also available on the AUCD Multicultural Council Resource Page.

Rose F. Kennedy UCEDD (NY) Associate Director Comments on Medicaid System in Editorial. March 18, Dr. Arnold Birenbaum submitted the editorial, Getting Medicaid back on track a struggle. The editorial was published in the Journal-News, a multi-media company serving the New York’s Lower Hudson Valley. Here is an excerpt: “When Medicaid was signed into law by Lyndon Johnson in 1965, its purpose was to provide access to health care for people who could not afford to pay for it. These could be people who were well below the federal poverty level…or those who were medically indigent. In the past 40 years, however, there has been mission creep, the result of structuring of Medicaid as a federal-state endeavor, and because the program provides built-in opportunities for innovation when new medical needs emerge and because there is an expansion of enrollments in the program when the economy takes a downturn.”

Utah Center for Persons with Disabilities (UCEDD) News Flash Newsletter. The UCEDD’s News Flash Winter 2007 Newsletter is now available for review.

New Publications from the Rural Institute (MT UCEDD). Alexandra Enders is a Research Associate with the Research and Training Center on Disability in Rural Communities.

New Products and Resources from Wyoming Institute for Disabilities (UCEDD)’s Victims of Crime with Disabilities Resource Guide.

  • National Crime Victims Rights Week Guide. Sponsored by the U.S. Department of Justice's Office for Victims of Crime (OVC), the guide was developed to help communities and victim assistance providers promote awareness of crime victim issues and help commemorate National Crime Victims' Rights Week held each year in April.
  • I Was #87: A Deaf Woman's Ordeal of Misdiagnosis, Institutionalization, and Abuse. The autobiography of Anne Bolander describes her childhood in the 1960s when she was misdiagnosed as being mentally retarded rather than deaf, and was sent to a special school where she and the other students were horrifically brutalized almost daily. Anne later suffered similar abuse within her own family.
  • The State Boys Rebellion (Book). "In the early twentieth century, United States health officials used IQ tests to single out "feebleminded" children and force them into institutions where they were denied education, sterilized, drugged, and abused. Under programs that ran into the 1970s, more than 250,000 children were separated from their families, although many of them were merely unwanted orphans, truants, or delinquents. The State Boys Rebellion conveys the shocking truth about America's eugenic era through the experiences of a group of boys held at the Fernald State School in Massachusetts starting in the late 1940s.”
  • Victims/Survivors Who Use Service Animals: A Background Paper and Sample Program Policy for Domestic Violence and Sexual Assault Programs. Written for non-lawyers, the background paper serves as a fact sheet on allowing service animals into domestic violence shelters. It also provides sample policies that may be used as a template for other shelters.
  • "60 Minutes" Explores the New American Asylums. On February 11th, "60 Minutes" aired a story exploring the plight of people with mental illness in jail. The episode focused on Timothy Souders who had manic depression. Like many individuals with mental illness, he got into trouble and ended up not in a hospital, but in jail. It was a shoplifting case, but he ended up paying with his life. With an estimated 300,000 people with mental illness behind bars nationwide, prisons are now the new asylums.
  • Cases from the Headlines. To bring attention to the serious issue of crimes against people with disabilities, the Resource Guide has begun developing an online collection of news stories involving victims with disabilities. Selected from newspaper and news channel web sites, articles have been abstracted and posted in the Online Discussion section of the Resource Guide website.

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

  • Transition Solutions Technical Assistance Services. The Institute's National Center on Secondary Education and Transition, in partnership with three other organizations, launched Transition Solutions in 2006. ­ Transition Solutions is a group offering customized services for state education agencies and school districts to help them bring about systems change and high school reform. During the past year it has added specialized services in a number of areas, including dropout prevention, resource mapping, and interagency team development.
  • Summer Courses: The UCEDD and University of Minnesota's Department of Educational Policy and Administration are presenting two summer courses for community professionals and University students:
  1. Disability Policy and Services (EdPA 5356, 3 cr); June 11–22, 2007, 8:00 am – 12:00­ noon (M-F). This course will examine current policy, research, and practices related to services that support individuals with disabilities and their families across the lifespan. The course is the core course for the Certificate in Disability Policy and Services, a 12-credit interdisciplinary program on services and supports for persons with developmental disabilities.
  2. Person-Centered Thinking and Planning for Persons with Disabilities (EdPA 5080, 3 cr); July 9–20, 2007, 8:00 a.m. – 12:00 ­noon (M-F). This course will provide an overview of person-centered thinking and planning for persons with disabilities, with an emphasis on individuals with intellectual and/or developmental disabilities. It will include a focus on the evolution of person-centered thinking, and in-depth examination of contemporary applications. Among topics discussed are self-determination, community inclusion, self-advocacy, rights/choice, person-centeredness, dignity/respect, cultural sensitivity, and collaboration.
For further information about these two summer courses, contact Marijo McBride at 612-624-6830. For information about summer class registration, contact the College’s Office of Student and Professional Services at 612-625-6501. Information can also be found at the University of Minnesota College of Education website.

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

  • AIMFREE Manuals. NCPAD announces the release of the AIMFREE (Accessibility Instruments Measuring Fitness and Recreation Environments) Manuals. These manuals are a validated series of questionnaire measures that can be used by persons with mobility limitations and professionals (i.e., fitness and recreation center staff, owners of fitness centers, park district managers) to assess the accessibility of recreation and fitness facilities, including fitness centers, parks, swimming pools, and trails. Currently, the boxed set of 6 manuals is $125 (each is a 6” x 8.5” glossy, spiral-bound booklet) and a printed (unbound plain paper) copy of each manual is $10.
  • Inclusive Fitness Means More Than Accessible Bathrooms and Entranceways. The NCPAD and Rehabilitation Engineering Research Center on Recreational Technologies and Exercise Physiology (RecTech) joined forces with the American College of Sports Medicine (ACSM), the world leader in exercise science research and professional training programs, to formalize a partnership that will address the pervasive inaccessibility of fitness centers and health clubs, including the equipment and programs they offer. The Inclusive Fitness Coalition (IFC) will work closely with industry, government, and public and private organizations to bridge the gap between what health and fitness facilities have to offer their communities, and what millions of people with disabilities perceive as a lack of accessibility.
  • Pressure Sore Prevention in Daily Living Contexts of Adults with Spinal Cord Injury. Pressure sores are a common and functionally limiting secondary condition for people with spinal cord injury (SCI). The risk for developing pressure sores is multi-factorial. This month’s column will review factors associated with increased risk for pressure sore development among a group of people with SCI who were seeking treatment through a rehabilitation center pressure ulcer management program (Clark et al., 2006).
  • Walk Your Way to Fitness: Walk, Workout, Be Active for People with Intellectual Disabilities (Video). Developed by IRIS Media Inc, this 3 disc DVD set includes 9 lessons designed to instruct participants on fitness and motivational topics. Topics covered are: how to use a pedometer, setting and meeting walking goals, tips for developing an active lifestyle, advice on getting around barriers to exercise, and methods for maintaining a positive attitude towards fitness.
  • Building Inclusive Physical Activity Communities for People with Vision Loss. A special supplement of the Journal of Visual Impairment & Blindness (Volume 100) features an article by NCPAD Director James H. Rimmer about the substantial benefits of physical activity in the health and well-being of people with vision loss, and how inclusive physical activity communities can allow them to maintain a more independent and enjoyable life. 
  • Coaching Adapted Sports (Fact Sheet). As disability sports gain more attention, media exposure, sponsorships and funding, the pool of elite-level coaches for disability sport grows. What is desperately needed, however, are entry-level volunteers to coach the grassroots programs that first introduce children with disabilities to adapted sports. At first glance, the idea of coaching a child with a disability may seem daunting. However, there are many more similarities than differences in coaching children with and without disabilities. Hard copies of the full fact sheet are available by calling NCPAD at 800-900-8086.

Research to Know

Children with Borderline Intellectual Functioning May Be at Risk for Poor Parenting. A study of 217 mothers and 5-year olds with borderline intellectual functioning revealed that this group of children is uniquely vulnerable to poor parenting. Parenting displayed by mothers of children with borderline intelligence and the general interaction in these families is marked by low maternal involvement rather than by hostility or overt mother–child conflict, according to the study. The study is published in the March 2007 issue of the American Journal on Mental Retardation (AJMR).

Linkages between Child Abuse and Attention-Deficit/Hyperactivity Disorder in Girls: Behavioral and Social Correlates. The objectives of this study were to examine whether girls with attention-deficit/hyperactivity disorder (ADHD) are at increased risk of having histories of abuse and to assess whether the presence of an abuse history may constitute a distinct subgroup of youth with ADHD. The authors examined rates and correlates of child abuse in an ethnically and socioeconomically diverse sample of girls with attention-deficit/hyperactivity disorder (ADHD; n = 140) and a matched comparison sample of girls without ADHD (n = 88), all aged 6-12 years. A thorough chart review reliably established documented rates of physical and sexual abuse in both samples. Full Citation: Briscoe-Smith, Allison M. and Stephen P. Hinshaw. Linkages between child abuse and attention-deficit/hyperactivity disorder in girls: Behavioral and social correlates. Child Abuse & Neglect, 30 (2006): 1239 - 1255.

Other Resources

How Americans with Disabilities Act Applies to Employment in the Health Care Industry (Fact Sheet). Naomi C. Earp, Chair of the US Equal Employment Opportunity Commission, announced the issuance of a new question-and-answer (Q&A) fact sheet on the application of the Americans with Disabilities Act to job applicants and employees in the health care industry. The new publication is part of a series of Q&A documents about specific disabilities in the workplace and specific industries.

Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities (Department of Education Publication). The information in this pamphlet explains the rights and responsibilities of students with disabilities who are preparing to attend postsecondary schools. This pamphlet also explains the obligations of a postsecondary school to provide academic adjustments, including auxiliary aids and services, to ensure the school does not discriminate on the basis of disability.

New Online Toolkit for Medical Responses to Radiation Emergencies. The Department of Health and Human Services has developed a new downloadable online diagnostic and treatment toolkit designed for health care providers, primarily physicians, who may have to provide medical care during a radiation incident. The new information package includes easy-to-follow procedures for diagnosis and management of radiation contamination and exposure, guidance for the use of radiation medical countermeasures, and a variety of other features to facilitate medical responses.

Post Traumatic Stress Disorder (Department of Veterans Affairs Fact Sheet). Most people experience considerable distress and avoidance after being exposed to a severely traumatic experience. This is a normal and adaptive response and often includes reliving the event in thoughts, images, and dreams. This initial reliving of the event may in fact contribute to the healing process and provide a way of achieving mastery over the event. For most people, these symptoms usually become less severe and gradually disappear over time. For others, the symptoms persist and become chronic, leading to PTSD.

First Look at Traumatic Brain Injury (TBI) – Bob Woodruff Reports. The ABC News series can be viewed in its entirety online. It is divided into chapters for easier viewing. Some of the streaming chapters that deal with TBI and Veterans: Wounded Warriors; Are we ready for our injured?; and The Human Cost of War.

New Edition of Mental Health, United States, 2004. Coordinated primary and mental health and substance abuse care, adoption and application of quality improvement tools, population assessments and national mental health services statistics are contained in Mental Health, United States 2004. The compendium of the latest information available on mental health services was released the Substance Abuse and Mental Health Services Administration's (SAMHSA) Center for Mental Health Services (CMHS). For the first time, this edition includes chapters on quality improvement and its application to the mental health field. Specialized topic areas discussed include a national overview of mental health consumer organizations in the United States and the role of information technology as a force that promotes transformation and improved quality of care.

A Disability System for the 21st Century (Social Security Advisory Board Report). In its October 2003 report, The Social Security Definition of Disability, the Social Security Advisory Board observed that, "The original Social Security disability programs were. designed to serve those who had no realistic expectation of a return to the workforce because of a combination of severity of disability and attainment of near retirement age." After 3 years of intensive study of this question, the Board has issued a follow-up report outlining its vision of a disability system for the 21st century that is in alignment with the Americans With Disabilities Act, which proclaimed " the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals."

Resources from the Community Living Exchange Collaborative

  • The Real Choice Systems Change Grants: Compendium Sixth Edition. The Compendium contains basic information about each of the Real Choice Systems Change Grant awards in FY03–FY04 plus the Family to Family and Systems Transformation Grantees awarded in FY05 and FY06. The Compendium will help Grantees identify others with similar goals and activities. Learn more about how the grants will be used to allow more people of all ages with a disability or long term illness to live and participate in their communities.
  • Money Follows the Person Demonstration: Covering Case Management Services. CMS awarded Money Follows the Person awards to 17 states and another 21 states may receive awards in the near future. Supporting individuals in institutions to move to the community is a critical component of MFP. Transition coordination, relocation coordination, supports coordination and case management are terms often used to describe this complex activity. This brief reviews optional targeted case management services, 1915(c) home and community based waivers, and administrative activity.
  • Real Choice Systems Change Grant Program: First Year Report. To help States build the infrastructure needed to remove barriers and create more consumer responsive LTC systems, CMS awarded $70 million in Real Choice Systems Change Grants. Fifty-two Grants were awarded in Sept. 2001 (25 Real Choice, 10 Community-Integrated Personal Assistance Services & Supports, and 17 Nursing Facility Transition). This report describes the progress FY01 Grantees have made on their activities during the first year of the three-year Grant period (Oct 1, 2001-Sept 30, 2002). 
  • Reducing Nursing Home Utilization and Expenditures and Expanding Community-Based Options. This paper explores and analyzes selected state approaches to engage nursing facility operators to be part of systems change activities that offer individuals additional, less restrictive choices to live more independently with appropriate supports. The strategies described offer other states lessons learned that may be replicated as part of a broader approach to meet changing and growing demand for home and community-based services. Efforts in IN, IA, MI, MN, NE, ND, NY, and WI are described.

Two New Resources on Best Practices in Intellectual Disability

  • User's Guide: Mental Retardation: Definition, Classification and Systems of Supports (10th Edition). This practical new Guide on the 2002 AAIDD Definition Manual tells clinicians, educators, policy makers, and program managers how to implement the various components of the AAIDD definition system in their specific settings. The authors discuss the contemporary relevance of the supports-based AAIDD definition in the context of issues ranging from special education practices and IDEA mandates, to diagnosing individuals with a higher IQ and conducting retroactive diagnoses such as in the Atkins v. Virginia case.
  • Clinical Judgment. Now clinicians no longer have to rely on intuition in situations where complex medical or behavioral conditions and legal restrictions on client assessments require multiple analyses. In this first-ever best practices guide, the authors systematically explore the role of clinical judgment and lay out six strategies, operational actions, and guidelines to ensure best practices in clinical judgment for practitioners in the field of mental retardation and developmental disabilities.

Kaiser Family Foundation Issues New Primers On The Medicare and Medicaid Programs. Together, Medicare and Medicaid provide health coverage to about 90 million Americans. To help explain the two programs, the Kaiser Family Foundation issued a new primer on the Medicare program and an updated version of its primer on the Medicaid program.

  • Medicare. This primer looks at the characteristics of the Medicare population, what benefits are covered, how much people with Medicare pay for their benefits and the program's overall costs and future financing challenges. It also provides information about the Medicare Advantage program and the Medicare drug benefit, and includes detailed tables showing the number of Medicare beneficiaries in each state, broken out by age, income level, source of drug coverage, and by enrollment in Medicare Advantage plans.
  • Medicaid. This primer examines the structure of the program, who it covers, what services it provides, and spending. Because Medicaid is jointly financed by the federal and state governments and the states administer the program within broad federal guidelines, programs vary across states. Tables examining the state-to-state variation in eligibility, enrollment, and spending for Medicaid enrollees are included in the primer.

Various Resources

  • Right to Risk (DVD documentary). “Right to Risk” was filmed in May 2005 and accompanies eight individuals with disabilities on a 15-day, 225-mile whitewater raft trip down the Colorado River through Arizona’s Grand Canyon. The DVD will be completed shortly and accessible with both closed-captioning and audio description. To be notified when it is available, email [email protected]. If you have comments or questions, please contact the producers, John Ryan and Kathleen Jo Ryan.
  • LD.org Features Material on Transitioning to College. The transition from high school to college and the workplace can pose special challenges for students with learning disabilities. Careful planning and cooperation among parents, educators and students with learning disabilities is essential to overcome the many barriers that arise when these students leave high school for post-secondary education, vocational training, and other options as young adults in society.
  • Paying for Quality Care: State and Local Strategies for Improving Wages and Benefits (Brief). To assist states in ensuring the quality of personal care services, the AARP Public Policy Institute commissioned two of the nation’s top experts on the direct-care workforce to provide this in-depth analysis of state and local practices and initiatives to improve the wages and benefits received by direct-care workers. It is our hope that policymakers, providers, researchers, and advocates will draw upon the emerging state-level experience and lessons analyzed in this report as they seek to improve the wages and benefits paid to workers.
  • Autism Spectrum Disorders from A to Z / Los Trastornos del Espectro de Autismo de la A a la Z (Book). This book, written by two sisters who are professionals in the field of autism, helps professionals and families understand Autism Spectrum Disorders (ASD); how ASD affects their loved one, student, or client; and what they can do about it. Each chapter provides information, guidance, and resources on topics including the process of getting a diagnosis; dealing with its impact; understanding and obtaining in-depth, meaningful assessments; obtaining supports and services; developing individualized programs at any age or stage of life; working effectively as teams to assist families; and transitioning from one phase of life to another. Spanish edition available.
  • Higher Education and Web Accessibility: Providing Training and Support for the Future (E-Journal Issue). This issue of Access Technologists Higher Education Network (ATHEN) E-Journal focuses on the training needs of distance learning professionals, Webmasters, and other information technology (IT) professionals in postsecondary institutions. Specifically, it examines how we assure that such personnel design products and environments that are accessible to students with a wide range of abilities and disabilities.
  • Technology Counts 2007: A Digital Decade (Education Week’s 10th Annual Report). The report, a joint effort of Education Week and the Editorial Projects in Education (EPE) Research Center, features the center’s annual state survey on educational technology and grades the 50 states and the District of Columbia on their technology leadership. State Technology Reports are provided in a supplement to the 10th edition. This report is available for free online only until April 15, 2007.

New Websites

National Direct Service Workforce (DSW) Resource Center. The DSW Resource Center supports efforts to improve recruitment and retention of direct service workers who help people with disabilities and older adults to live independently and with dignity. The Resource Center is funded and supported by the Centers for Medicare & Medicaid Services.

Autism Information Center. Developed by US Department of Health and Human Services; this site provides information on autism from the Centers for Disease Control and Prevention. The site includes an overview of Autism, Frequently Asked Questions, and resources for a wide array of audiences including practitioners, families, educators, and researchers.

New Autism Web Site for Spanish-Speaking Families. A new Web site, created by families for families, provides information in Spanish about Autism Spectrum Disorders. Under development are a chat room and forum area, which will be moderated by parents of children with autism. Two doctors and an advocate will help to answer questions.

Job Accommodation Network (JAN) – Accommodation Information by Disability. JAN, a free consulting service designed to increase the employability of people with disabilities by: providing individualized worksite accommodations solutions, providing technical assistance regarding the ADA and other disability related legislation, and educating callers about self-employment options.

Children’s Neurobiological Foundation (CNS). CNS is a nonprofit research foundation improving the lives of children disabled by neurological disorders through research focused on brain repair and regeneration.

 

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