| Volume 08 | Issue 3 | January 21, 2008 |
Welcome to Monday Morning in Washington, D.C., published weekly by The Arc of the United States. We will bring to you news of interest to self advocates and their families, volunteers, professionals, and supporters of the disability movement. Please send any comments to mmwdc@thearc.org. You are welcome to reproduce and distribute items from Monday Morning in Washington, D.C., but please credit Monday Morning in Washington, D.C. (The Arc of the United States, 2007).
The Arc of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with our network of members and affiliated chapters, we improve systems of supports and services; connect families; inspire communities; and influence public policy.
[NOTE: Having trouble reading this newsletter? Read it online.] [Past Issues]
New Civil Rights Movement: Passionate Crusade for Inclusion of People with Disabilities
“’Sesame Street’ is rare. For almost 40 years the writers, producers and administrators have been committed to including people with disabilities to truly represent society. But, how often do you see people with disabilities in commercials, television shows, film or theatre?” writer Emily Perl Kingsley asked.
To read the full article by Pam Vetter click here: http://www.americanchronicle.com/articles/viewArticle.asp?articleID=47129
International Conference on Self-Determination
The Center for Self Determination is presenting the International Conference on Self-Determination, May 27th to 29th, 2008 in Detroit, Michigan at the spectacular Renaissance Center along the Detroit River separating Canada and the United States.
To read more information about the conference, click here: http://communitydrive.org/Conference.html
A Troublesome Decline in Disability Hiring
Washington Post
By Stephen Barr
Thursday, January 17, 2008; D04
Most federal agencies are losing more employees with severe disabilities than they are hiring, and the Equal Employment Opportunity Commission wants to get the government back on path as a model employer. http://www.washingtonpost.com/wp-dyn/content/article/2008/01/16/AR2008011603757.html
Family Voices of North Dakota e-News
Toolkit for Integrating Healthy Physical and Mental Development in Early Learning Guidelines
http://nrc.uchsc.edu/ELG/elg.htm
More on the National Survey on Children with Special Health Care Needs 2005-2006
The Child and Adolescent Health Measurement Initiative (CAHMI) has “point and click" online access to national- and state-level findings from the just released 2005/06 National Survey of Children with Special Health Care Needs. Users can quickly and interactively compare the new 2005/06 NS-CSHCN data for over 100 child health indicators and also select and download findings for various population subgroups. Please visit, National Survey on Children with Special Health Care Needs - http://childhealthdata.org/content/Default.aspx
Book Provides Financial Tools for Families of Children with Special Needs
The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child’s Life is written by authors who also have family members with special needs (John W. Nadworny & Cynthia R. Haddadis). Also included is a CD-Rom which contains a helpful Financial Planning Timeline and a printable Letter of Intent that lets parents communicate key information, concerns, and desires to future caretakers. The book is available through Brookes Publishing: http://www.brookespublishing.com/store/books/nadworny-68028/index.htm
New Resources on Family Tax Credits Available
Tax filing season is upon us. Tax credits can provide thousands of dollars to families struggling to make ends meet - but only if families are informed of the credits and claim them on their tax returns. The easy-to-use tax credits resources below and on the National Women's Law Center's Tax Credits Outreach Campaign website - http://www.nwlc.org/details.cfm?id=3134§ion=tax can help you prepare to help families in your community.
Easy Access to Digital Books Online:
The website Bookshare.org has announced exciting news! Book scans can now be shared through a special exemption in the U.S. copyright law that permits the reproduction of publications into specialized formats for persons with print disabilities. The website now allows you to access books that are stored online as well as add books to the collection. For additional information, visit: http://www.bookshare.org
Report Shows Under-Detection of Early Developmental Delays
A new literature review has been conducted to determine the effectiveness of current efforts by primary care providers to detect developmental delays in young children. Sadly, this report shows that there seems to be a considerable under-detection of these delays, and makes several recommendations for improving screening and surveillance throughout communities. The entire report is available at: http://www.commonwealthfund.org/publications/publications_show.htm?doc_id=605625
Physician and filmmaker Gretchen Berland gave video cameras to three Los Angeles residents who use wheelchairs and asked them to document their everyday lives. The result is Rolling, a frank and witty documentary that sheds light on the daily challenges of living with limited mobility. Galen Buckwalter, a clinical psychologist who became paralyzed when he was 17, is one of the participants in the film. He mounted a camera to his wheelchair and chronicled his life - from doctor's visits to family camping trips. The documentary was featured on National Public Radio's "Talk of the Nation" and more information and short clips from the documentary can be found at their web site, http://www.npr.org/templates/story/story.php?storyId=17993638
Supporting Families, Nurturing Young Children:
Early Head Start Programs in 2006, by Elizabeth Hoffmann and Danielle Ewen - http://www.clasp.org/publications/ehs_brief9.pdf
[News from ADA-Ohio]The following seminar series is free, but pre-registration is required. Please e-mail
jpete@uic.edu to register for a session or for more information and/or
questions.
Mark Your Calendars for the 2008 Accessible Technology On-line Seminars
The DBTAC-Great Lakes ADA Center is sponsoring a new on-line seminar series
on accessible technology in 2008. The goal of the series is to increase
awareness on technology accessibility for people with disabilities. Each
session will be held from 1:00pm-2:00pm Central Time. Please note the time will be different
if you live in a different time zone.
This on-line series will utilize an internet based conferencing system. The
Online Conferencing System is a fully accessible integrated data and voice
medium that enables users to conduct workshops over the internet from just
about any computer with a network connection and web browser. Participation
is enhanced with use of a personal microphone.
Schedule is as follows:
February 11, 2008 State Laws Addressing Accessibility
Several states have passed and implemented laws specific to website and
other technology accessibility. This seminar will highlight the recently
passed Illinois Information Technology Accessibility Act and talked about
other states that have implemented such laws.
March 3, 2008 Web Accessibility for Students with Disabilities
In 1987, 3.6% of youth with disabilities went on to two year colleges, while
in 2003, 20.8% did so. Attention to the learning and information technology
of these youth is imperative, if they are to gain equitable access both to
education and subsequently to employment. This presentation will provide
information on a web-based tool for community college student affairs and
information technology personnel to assist in the formulation of a
campus-wide plan for web and IT accessibility for students with
disabilities. This tool was an outgrowth of several years of research
conducted by the Employment and Disability Institute and Institute for
Community College Development in the ILR School at Cornell University.
May 19, 2008 Accessible Computer Applications
Many jobs now require interaction with various computer applications, such
as record keeping and database systems. Inaccessibility of these
applications can seriously hinder job performance for individuals with
disabilities. This seminar will discuss accessibility issues with common
workplace computer applications and how to make them accessible.
August 11, 2008 ADA and Website Accessibility
The Americans with Disabilities Act (ADA) does not explicitly discuss
whether it applies to websites, and thus far, there have been few cases.
Website accessibility cases courts have reached different conclusions as to
whether websites are covered under the ADA. This session will discuss recent
legal developments and their potential implications.
September 29, 2008 Learning and Accessibility
It is expected that e-learning will become part of everyday life in many
organizations in the next few years. As e-Learning expands, the gap will
widen between people who can fully benefit from e-Learning and those who
will be excluded because of inaccessible design. This seminar will address
strategies for businesses to improve their knowledge and implementation of
accessible e-Learning.
ADA-OHIO (The Americans with Disabilities Act),
700 Morse Road, Suite 101,
Columbus, OH 43214,
800-ADA-OHIO (800-232-6446),
614-844-5537 FAX,
adaohio@aol.com, http://www.ada-ohio.org/ ADA-OHIO is a nonprofit 501(c)(3) organization.
REFERENCE POINTS:
ICI Data Note Examines National Day and Employment Trends
The Institute for Community Inclusion (ICI) has released a Data Note on national day and employment service trends in mental retardation or developmental disability (MR/DD) agencies. Drawing from ICI's National Survey of Day and Employment Services, this Data Note reports that while the percent of individuals with intellectual disabilities supported in integrated employment settings increased between fiscal year 1999 and fiscal year 2004, a majority of people are still supported in facility-based settings. The authors suggest that it is possible that community-based non-work services are replacing rather than supplementing support for integrated employment. Furthermore, the data indicates that the system of funding day and employment services for people with intellectual disabilities continues to favor facility-based service options.
This Data Note is available at http://communityinclusion.org/article.php?article_id=210.
Conference and Workshop Updates Added to the PACER Website
REFERENCE POINTS Conference and workshop updates feature NEW additions to the listing of transition related national and regional conferences maintained on PACER Center's TATRA Project web site. To see our complete calendar of events, please visit us at http://www.pacer.org/tatra/calendar.asp.
HAPPY NEW YEAR FROM COLLEGE PARENTS OF AMERICA AND THE TATRA PROJECT!
Free one-year membership for REFERENCE POINTS readers. Details below.
College Parents of America http://www.collegeparents.org has developed a free one-stop "Parent Resource Center" offering information and guidance to help parents prepare youth for college, navigate the admissions process, and make the most of the challenges of child and parent relations during the college years. College Parents of America also publishes two free e-newsletters: "A Decade of Decisions" is a quarterly newsletter highlighting action items and deadlines corresponding to a student's particular academic year, from 7th grade to college graduation. A more frequent "President's column" features updates and insights on legislative actions, financial information, admissions trends and tips, and more.
In addition to these free resources, College Parents of America, is offering REFERENCE POINTS readers a free one-year membership ($19 value) providing access to the "members only" sections of their web site. Members will have access to
REFERENCE POINTS readers interested in taking advantage of this free membership offer can sign up by going to http://www.collegeparents.org/PACER
ABOUT COLLEGE PARENTS OF AMERICA - http://www.collegeparents.org
College Parents of America is a national membership association serving current and future college parents. Members include parents, colleges and universities, local school systems, corporations, associations and other organizations dedicated to making higher education accessible - and successful - for all Americans.
A Consumer Guide to State Health Reform
Families USA and Community Catalyst are thrilled to introduce a new, interactive web tool for state health advocates. A Consumer Guide to State Health Reform - http://www.communitycatalyst.org/projects/schap/a_consumer_guide walks advocates through the wide variety of options available to expand state health coverage.This guide will help advocates design health coverage expansions that build upon the current system of public programs, employer-sponsored insurance, and private market options including how to:
We hope this tool will make the ambitious endeavor of expanding coverage a little easier to undertake. Check it out, and don't hesitate to contact us with any questions.
DisabilityInfo.gov
Medicaid Update: Proposed Rule to Allow Medicaid Beneficiaries to Control Personal Assistance Services
The Centers for Medicare & Medicaid Services (CMS) is requesting public comment on how states could allow Medicaid beneficiaries who need help with activities of daily living to hire, direct, train or fire their own personal care workers. Beneficiaries could even hire qualified family members who may already be familiar with the individual's needs to perform personal assistance (not medical) services. The proposed rule may be downoaded by clicking here:http://www.cms.hhs.gov/MedicaidGenInfo/Downloads/CMS2229P.PDF
This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=143.
News & Events Update: National Disability Policy: A Progress Report
A report issued on January 15, 2008 by the National Council on Disability (NCD). National Disability Policy: A Progress Report examines employment, housing, education, transportation and other federal policies that affect people with disabilities. It includes examples of continued progress, as well as the challenges that remain for citizens living with disabilities who wish to be more independent, more productive and more actively involved in their families and communities.
This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=10. You may also download the complete report by clicking here - http://www.ncd.gov/newsroom/publications/2008/pdf/20080115_NCD_ProgressReportComplete.pdf
Special Education for Educators Update: NASA Unveils Cosmic Images Book in Braille for Blind Readers
Touch the Invisible Sky is a 60-page book with color images of nebulae, stars, galaxies and some of the telescopes that captured the original pictures. Each image is embossed with lines, bumps and other textures. These raised patterns translate colors, shapes and other intricate details of the cosmic objects, allowing visually impaired people to experience them. This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=107New Products added to the Quality Mall
"The Gillian Film" - http://www.qualitymall.org/products/prod1.asp?prodid=4336
National Council on Disability Releases National Disability Status Report Citing Progress and Challenges
The National Council on Disabilities released its annual report, National Disability Policy: A Progress Report - http://www.ncd.gov/newsroom/publications/2008/NationalDisabilityPolicy_A_Progress_Report.html or http://www.ncd.gov/newsroom/publications/2008/pdf/20080115_NCD_ProgressReportComplete.pdf noting progress where it has occurred and making further recommendation where necessary to the executive and legislative branches of the Federal Government.
For more information, please contact NCD's director of external affairs Mark S. Quigley at mquigley@ncd.gov or telephone at 202-272-2004.
Why Are People In Nursing Facilities - Residents' 2007 Clinical
Characteristics. Information Bulletin #238 (1/08)
CMS' 2007 Nursing Home Data Compendium was recently released. In this
and in the next two succeeding Information Bulletins, we will break down
some of the findings. To review your State , go to http://www.cms.hhs.gov/CertificationandComplianc/12_NHs.asp#TopOfPage and
scroll down to Nursing Home Data Compendium 2007 - Parts 1 and 2 .
Why are people in these facilities?
Nursing facilities, especially those reimbursed with federal Medical
Assistance reimbursements, require a "medical necessity" for such
institutionalization. That is, legally, a person should not be admitted
unless the person has a "medical necessity" for institutionalized nursing
facility services.
The following are the two most frequently used indica of such "medical
necessity" - (1) Need for help with Activities of Daily Living and/or (2)
Cognitive Impairments.
States normally require a person to have a certain number of ADL or
cognitive impairments to either be admitted into or stay in a nursing
facility. In order to receive federal nursing facility Medicaid
reimbursements, documentation of "medical necessity" is required.
Obviously, a person can have both, but CMS does not provide a cross
tabulation for persons who have both ADLs and cognitive impairments.
Here's what CMS surveys found regarding these two conditions:
ADL Impairments:
Nearly 30.3% of persons in nursing facilities had NO impairment of ADL;
that's more than one million persons institutionalized in nursing
facilities at sometime during the year who had no ADL impairment. Another
8.3% had only one ADL impairment. More than 46% of the persons had two or
fewer ADL impairments. (Table 3.3.(e)).
The following states have the largest percentage of persons with NO ADL
impairments, far above the national average of 30.3%:
Oklahoma 44.6%
Missouri 41.4%
Illinois 40.7%
Arkansas 39.3%
Kansas 38.2%
Louisiana 37.8%
Why are any persons in nursing facilities with no or even only one or two
ADL impairments? If they are in these facilities only due to ADLs, can't
these people be provided Personal Attendant Services in the community?
Why are States, for those residents on Medical Assistance, permitting
these people to be admitted into nursing facilities and then paying
extremely large payments for them to be unnecessarily institutionalized?
Why aren't advocates making the States "Close the Front Door" and not
admit or pay for these persons? Why aren't advocates demanding their
states to offer persons with no or only one or two ADLs less expensive
community-based services?
If people are in nursing facilities and do not have impairments of no or
few ADLs, then presumably they are institutionalized because they have a
cognitive disability. If that is correct, did these people receive PASSAR
evaluations before they were admitted, and are they receiving appropriate
services for their cognitive impairments? If they have only a cognitive
impairment, how do they otherwise meet the "medical necessity" standard
for nursing facilities?
Cognitive Impairments:
Nearly 31% of residents had NO cognitive impairment; that's nearly one
million persons without any cognitive impairments. Another 12.2% had only
a "very mild" and 14.5% have a "mild" cognitive impairment. Therefore,
nearly 58% had either no or only a mild or less cognitive impairment.
(Table 3.5.(e))
The following states, in descending order, have the largest percentage of
persons in nursing facilities with NO cognitive impairments, far above the
national average of 30.9%:
Arizona 45.3%
New Jersey 42.0%
DC 41.2%
Florida 39.5%
Maryland 38.4%
Nevada 38.3%.
Interestingly, the national average was only 11.5% of the residents had a "severe" or "very severe" cognitive impairment, far lower than what is
commonly believed.
The following states, in descending order, far exceeded the national
average for the percentage of people in nursing facilities with a severe
or very severe cognitive impairment:
Georgia 17.4%
Arkansas 15.5%
South Carolina 15.5%
Louisiana 13.9%
Kentucky 13.8%
Maryland 13%
Advocates should ask their MA officials for a breakdown of persons with a
combined ADL and cognitive impairments.
Are people with severe or very severe cognitive impairments receiving
specialized services, as Congress required in the Nursing Home Reform Act.
When one looks at both ADL and cognitive impairments, a frightening
picture emerges. Have nursing facilities become the last refuge for many
persons who are mentally ill, homeless, developmentally disabled? Are
States permitting them to stay in nursing facilities because that's where
states can receive federal reimbursements and funds?
Why is your State wasting Medical Assistance dollars on those persons who
could easily be treated appropriately in the community? Think how many
more persons could be served in the community with better use of these
funds.
Steve Gold, The Disability Odyssey continues
Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. To
contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.
Steve Gold, The Disability Odyssey continues
Back issues of other Information Bulletins are available online at http://www.stevegoldada.com
Career Development Web Course February 21 - March 5, 2008
TRN, Inc. is offering its popular 2-week, 20-hour web training
covering key principles and hands-on tools for innovative vocational assessment, career development skills, and vocational profiling for youth and adults with disabilities. (Course highlights below.)
A key factor in the job success of students and adults with disabilities is the job match. This course is an opportunity to learn how to support people to develop a career path that makes sense for them.
Registration is $149 US. Participants can log on at any time
during the course period and participate in the training.
The course is taught by Rob Hoffman. Rob is the Director of Community and Employer Development for Region 7 CRP-RCEP and is responsible for the development and delivery of training and technical assistance on employment services and business partnership strategies.
Registration is limited, and previous courses have filled to capacity.
To learn more about the training and to register, go to:http://www.trninc.com/entry/welcome2.asp
Course Outline
Principles of Career Planning: Using self-determination, person-centered planning, discovery to develop career goals.
Vocational Assessment: Career exploration strategies, including job shadowing and internet-based assessments, plus other tools such as interest inventories, workplace audits, and situational assessments.
Career Development:Understanding how to build confidence for self-presentation through enhancing job seeking skills, appearance, interviewing, skills portfolios and more.
Vocational Profiles: Developing career goals, future statements, resumé building, and vocational profiles.
Please forward this announcement to your colleagues.
Did You Get the SABE Newsletter?
Welcome to SELF ADVOCACY NATION by Self-Advocates Becoming Empowered Click here> http://www.sabeusa.org/documents/SABEnewsletter2008.pdf
You can learn more about SABE and how to get involved by visiting their Web site (www.sabeusa.org), or you can e-mail chair Julie Petty at SABEnation@gmail.com
IES Research Training Institute: Single-Case Design
The National Center for Special Education Research, within the Institute of Education Sciences, U.S. Department of Education, is sponsoring a two-day Training Institute to increase the capacity of researchers to conduct rigorous special education research using single-casemethodologies that incorporate quantitative analyses.
The Training Institute will be held in Washington, DC on April 15-16, 2008.
More information about the Training Institute, including the application procedures, have been posted on the website:
http://ies.ed.gov/whatsnew/conferences/?id=307&cid=4
Please contact Dr. Kristen Lauer (Kristen.Lauer@ed.gov, (202) 219-0377) or Dr. Erin Caffrey (Erin.Caffrey@ed.gov, (202) 219-2126) for more information.
New Resource Guide on Inclusion in Jewish community
JUST PUBLISHED!
Jewish Community Guide to Inclusion of People with Disabilities -
http://www.jfcsmpls.org/A%20New%20Site/pdf/inclusionguide.pdf
Disability Resource Guide -
http://www.jfcsmpls.org/inclusionresources.html
Editor, Journal of Religion, Disability, and Health
Haworth Press: http://haworthpress.com
I am pleased to announce the publication of my book "The Church of 80%
Sincerity" on Feb. 5, 2008 by the Penguin Group of New York.
It is one of Penguin's featured titles, has a wonderful foreword by
Anne Lamott and has received an excellent starred pre-pub review by
Publishers Weekly.
It is already available as a pre-order at a discount from Amazon.com.
Any support is appreciated. For review copies or publicity
opportunities, contact Penguin publicist Tom Haushalter at Tom.Haushalter@us.penguingroup.com.
David Roche,
604-740-0465,
800-820-8971
Partial Press Release
“It is not the fact of my disfigurement that wears at my psyche. It is
the fear and self-doubt of others, their very human concern about their
own social acceptability, their worry about being unloveable and
abandoned, which they project onto me.” - David Roche
David Roche, the author of “The Church of 80% Sincerity,” is an
excellent example of the working of the social model of disability.
Roche was born with a large venous malformation on the left side of his
face and neck. Surgeries and heavy radiation therapy in his infancy
further contributed to an appearance that others can view as grotesque
and frightening. With the face commonly being perceived as the locus
of the human persona, Roche is judged as being disabled, even though in
truth he meets none of the common physical criteria for disability.
[nectac-enotes] New Early Childhood Leadership Doctoral Program (Ed.D.)
This message is being posted on behalf of Robin McWilliam, Center for
Child Development, Vanderbilt School of Medicine
Vanderbilt University is pleased to announce the launch of a new Early
Childhood Leadership doctoral program (Ed.D.). Based in the Teaching and
Learning Department, this interdisciplinary program includes eminent
faculty from the department of Special Education and the Vanderbilt
Medical School. This innovative three-year doctoral program enables
early childhood professionals to continue working in their current
positions as they gain greater understanding of leadership and
administration, early childhood systems, development and learning,
applied inquiry, and program design and evaluation.
Students enroll as a cohort, take all courses as a group, and are able
to complete the program in three years of year-round study if they have
30 hours of master’s level courses that can be applied to their degree.
Courses are taken at Vanderbilt University in three intensive sessions
each semester. Students complete a Capstone project related to real
world problems as a culminating experience rather than a dissertation.
For additional details, please see the website
http://www.peabody.vanderbilt.edu/x407.xml. The program will begin in
June 2008. We are now accepting applications and admitting students. We
will continue to consider applications until our first cohort is filled
or until the end of March.
[nectac-enotes] NECTAC eNotes - January 18, 2008
Current and past issues of eNotes can be viewed online at http://www.nectac.org/enotes/enotes.asp
The Loneliness and Friendship issue of The Riot! is available for your viewing pleasure. To read Issue 15, click on the links below.
Download The Riot! as an adobe PDF document by clicking here: http://www.hsri.org/docs/Riot_Issue_15.PDF
Download The Riot! as a Rich Text file: http://www.hsri.org/docs/Riot_Issue_15.RTF
You can read past issues of The Riot!, purchase self-advocacy materials, or get your Riot! Gear at www.theriotrocks.org.
If you would like to sign up to receive the Monday Morning in Washington, DC, just click on this URL and sign up. http://info.thearc.org/cgi-bin/lyris.pl?join=mmwdc
Until Next week
The Arc of the United States,1010 Wayne Avenue, Ste. 650,Silver Spring, MD 20910, Phone: 301-565-3842, Fax: 301-565-3843, Email: mmwdc@info.thearc.org, Web: www.thearc.org
Disclaimer: MMWDC publishes information about issues and events that we believe to be important and likely to be of interest to advocates and others interested in inclusion of persons with disabilities in all parts of society. However, MMWDC and The Arc of the United States and TheArcLink Incorporated do not necessarily endorse all events, sponsoring organizations and reports which appear.