| Volume 08 | Issue 10 | March 10, 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]
[nectac-enotes] NECTAC eNotes - March 7, 2008
Current and past issues of eNotes can be viewed online at http://www.nectac.org/enotes/enotes.asp Topics in current issue:
Welcome to NOEWAIT
Please copy and send this message to all listservs, acquaintances,
professionals, local and national and sister organizations and other sources you may
have. For example, all the DD Councils, the P&A national and state
organizations, the appropriate persons at the National Arc, other state and local Arc's,
national Autism and CP, other professional organizations, governmental
officials, school officials, etc. We need a great deal of national involvement
if anything is going to get done. Please - anyone you can think of - that is
how this movement might possibly be successful - by letting just everyone
know and getting them involved.
NOEWAIT - The National Organization to End the Waitlist through Advocacy, Information and Transformation
Dedicated to ending national waitlists for services for adults with Developmental Disabilities through ADVOCACY within the political system, the sharing of INFORMATION from all sources, and the TRANSFORMATION of the laws, leading to all individuals with Developmental Disabilities receiving appropriate services of their choice within the community.
Waitlists for services for adults with developmental disabilities are a national disgrace. Some states have over 100,000 individuals with extreme needs waiting for services. Yet, individuals in each state are fighting for services on a person-by-person, county-by-county and state-by-state basis. There seems to be no national awareness nor coordination, yet this is truly a national issue.
The moderator, Denver C. Fox, Ed.D., is a parent of two adult children with profound disabilities. He is the moderator of the Colorado listserv, Parents of Adults with Disabilities.
Dr. Fox has been very active in the Colorado attempt to reduce the waitlists for about 7,000 adults with developmental disabilities in the Colorado system.
This listserv is open to all parents, friends, individuals with disabilities, professionals, politicians, governmental employees and others, and is designed to gather information about the extent of the waitlist in each state, to find out what attempts are being made to solve that problem within each state, and to develop a national agenda regarding ending the disgraceful waitlists.
Please contact DnvrFox@aol.com to join this listserv
PLEASE COPY, PASTE AND PASS THIS ON!
The Worst Nursing Facilities - Come On CMS. Information Bulletin 242 (3/08)
CMS issued a report on 2/13/08 identifying the 131 worst nursing
facilities in the country. To make this honor role:
(1) these facilities had at least twice as many deficiencies as the
average number of average deficiencies than other nursing facilities in
the quality of care they provided; (2) they had more serious problems than
other nursing homes ("serious problems"are those, by definition, that
actually cause harm or injury to residents), AND (3) they had a pattern of
these "serious problems" that persisted over approximately three years.
One would think that such nursing institutions would have been shut down
well before three years! Or at least, CMS would have disallowed federal
Medicaid and Medicare funds to continue to flow to them. Can one imagine
how afraid older Americans and other residents with disabilities must be
in these institutions? They see and know these "serious problems" pervade
the nursing facility where they are, and they must live in constant fear
that they will be the next "serious problem" even though many want to
return to the community with appropriate services.
Can anyone imagine the CMS officials or our esteemed federally elected
officials letting their mothers or brothers or children stay in these
institutions for any length of time, let alone three years?
One might think that our federal Medicare and Medicaid dollars would have
been stopped as soon as a nursing facility caused one "serious" harm or
injury to residents. Without any question, when "serious problems"
persist for more than one inspection, the dollars should have been
stopped. But they continue.
What will it take to stop spending our federal dollars in nursing
institutions that cause "serious" harm and injury to older Americans and
people with disabilities? Maybe if CMS officials will not impose serious
penalties we should ask them to spend some time in these institutions as"residents." Let them have to live in these nursing institutions and be
potential victims of "serious problems." Such an experience might even
push them to opt for community-based services as an entitlement.
Maybe CMS should tell us how many residents need to be seriously injured
or harmed before a nursing facility loses its Medicaid and Medicare funds. Is there a magic number?
Of the 131, here are the 52 worse nursing facilities that have not
improved but still receive Medicaid and Medicare funds. (Some of the 131"improved" in one inspection but have not sustained improvement for 12
months.) Let's remember these 52 are only the tip of the worst..
Disability and Older American advocates could check out the
mortality/morbidity rates in these nursing facilities. Do your newspapers know these esteemed nursing facilities have made the CMS "worse" list?
You could even determine what, if anything, your state Health Department
(or whatever is the nursing home inspection unit in your State) has done
to monitor or impose sanctions on these dangerous institutions.
Go to http://www.stevegoldada.com/stevegoldada/archive.php?cat=Nursing to see a list of the 52 worst nursing homes.
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
Family Center on Technology and Disability (FCTD)
News & Notes - Summer Camp '08
From August through May, kids with disabilities in summer camp morph into full-throttle dynamos, hurtling from one organized activity to the next in an environment that is safe, social and supportive. Fueled by good food, fresh air, high activity and companionship, kids in summer camp sleep the sleep of the satisfied, the day*s challenges met, new friends made and another day just ahead. For parents and other caregivers, however, the trick is to find that most appropriate camp, one that in addition to offering the best environment for recreation and socialization also has staff that are knowledgeable about campers* assistive technology. This issue is dedicated to the summer camp experience which, for many children with disabilities, may be the most meaningful experience of their lives.
Joining us, we are pleased to welcome Charlie Becker, Executive Director of Camp Courageous of Iowa. Supporting our interview with Mr. Becker are resources that provide information on a range of summer camp resources. We also feature members of our Knowledge Network. The members spotlighted this month are summer camps across the nation and organizations that support the summer camp experience for children with special needs. We invite you to contact these members for further information.
Please share this newsletter with other organizations, families and professionals who may benefit from it. We invite you to visit us at http://www.fctd.info. We welcome feedback, new members and all who contribute to our growing knowledge base.
To read the full story.....
http://www.fctd.info/resources/newsletters/index.php
Family Center on Technology and Disability (FCTD),
1825 Connecticut Ave. NW,
Suite 700S,
Washington, DC 20009,
email|fctd@aed.org
web | www.fctd.info
NATIONAL VIDEOCONFERENCE AND WEBCAST TO SOLICIT INPUT
ON THE NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH 2010-2014
LONG-RANGE PLAN
The National Institute on
Disability and Rehabilitation Research (NIDRR) today announced a national
videoconference to solicit remarks regarding NIDRR's long-range plan for fiscal
years 2010-2014. The purpose of the videoconference is to obtain ideas from the
public on the content and direction of the new NIDRR long-range plan.
NIDRR, a
component of the Office of Special Education and Rehabilitative Services at the
US Department of Education, is the major federal agency sponsoring disability
research.
Videoconference: The videoconference will take
place:
March 19, 2008,
1 p.m. to 5 p.m. EST
There are several ways to
participate:
To learn more about locations and methods of participation
and how to RSVP, please visit www.neweditions.net/nidrrlrp.
Other Input
Opportunities: If
you are unable to participate in the videoconference, webcast or
teleconference, there are several alternate ways to submit comments through
March 31, 2008.
Comments may be submitted
via email, using the following address: NIDRR-Maibox@ed.gov or through the Web, using the following address: www.neweditions.net/nidrrlrp
or by mail:
Donna Nangle,
U.S. Department of Education,
400 Maryland Avenue,
SW,
Room 6029,
Washington, DC
20202-2700
Visit www.aaidd.org/FYI/ to access current and past issues of this monthly newsletter. Subscribe at http://www.responsetrack.net/aaidd/sign_up
Topics in this issue:
From BNA
BOSTON--Four state Medicaid agencies filed suit against the federal Department of Health and Human Services Feb. 29, asking the U.S. District Court for the District of Columbia to strike down a new rule restricting reimbursement for case management services (Maine Department of Health and Human Services v. U.S. Department of Health and Human Services, D. D.C., case number unavailable, 2/29/08).
The interim final rule, which went into effect on March 3, will "jeopardize the health and safety of Medicaid beneficiaries, limit state flexibility to provide case management in the most effective and efficient manner, and result in a substantial reduction in federal funds" for case management services, the four state agencies told the court.
The lawsuit was filed by Maine, Maryland, New Jersey, and Oklahoma. David Loughran, a spokesman for Maine Attorney General G. Steven Rowe (D), said other states are affected by the rule and are considering joining the litigation. The agency rule will cost Maine $16 million over the next two fiscal years, Loughran said. Figures were not available for the other three states.
A spokeswoman for HHS was not available for comment.
Alleged Violation of Deficit Reduction Act
According to the complaint, the challenged provisions of the rule violate the Deficit Reduction Act of 2005...
...Read the rest of the article. http://www.aapd.com/News/longtermcare/080304bna.htm
...Read a press release from the Maine Attorney General about this lawsuit.- http://www.aapd.com/News/medicaid/080304mag.htm
I am celebrating the 25th Anniversary of ADAPT this year by participating in a FUN*RUN! http://www.adaptfunrun.org/sponsor.php?id=22
A quarter century of disability rights has brought about many positive changes like: accessible public transportation, curb cuts and ramps to access our communities, much more community services and a recognition of the need to promote community services for long term care instead of relying on institutions. I am very proud of ADAPT's role in helping to make all this happen, and in empowering hundreds and hundreds of disability activists to make changes for the better both in their own lives and in our society generally. But we aren't done yet. There are still many places that need access, there's still a huge need for accessible, affordable, integrated housing, institutional services are still the default for long term care, and we need to involve new activists too! We have work still to do in many areas.
A movement needs funds to get things done - not necessarily tons of money, but it needs some. And that is why I believe the Fun*Run is a great way to celebrate this quarter century marker! Any contribution you make is really appreciated.
We have a great new addition for the Fun*Run this year. Now you can even support this effort via the internet! This link http://www.adaptfunrun.org/sponsor.php?id=22 will take you to my Fun*Run sponsor page! All you have to do is click on the amount of your donation, your name and your email. If you'd rather get a paper bill then fill in your address, etc. If you make a flat donation (vs. a per-lap pledge) you can even pay by PayPal if you like.
Thanks for your support of disability rights and ADAPT!
Stephanie Thomas
http://www.adaptfunrun.org/sponsor.php?id=22
PS if you want to learn more about the 25th Anniversary Celebration you can check out this website www.adapt25.org
Ohio Legal Rights ServiceFamily friendly is a term that applies to how and to what extent organizations involve, welcome, and value the participation of family members in every aspect of the organization. In an effort to increase awareness about family friendly organizations, the Ohio Family Support Council (FSCouncil) developed two Family Friendly Check Lists: one for families and one for staff in organizations. The Check Lists can help administrators determine if their organization has adopted family friendly practices and may give the staff of an organization ideas for improving family friendly approaches in specific areas. Administrators can also compare staff perceptions compared to family member responses. The checklist for agencies can be found here: http://olrs.ohio.gov/Other/checklistagency.pdf . The checklist for families can be found here: http://olrs.ohio.gov/Other/checklistfamily.pdf . Hard-copy versions of both checklists are also available at no charge and can be ordered in small and large quantities. To place an order, contact Tom Hemmert at 614-466-7264 or by email at themmert@olrs.state.oh.us.
New products added to the Quality Mall web site:
"El Peecho's Pennhurst Page" -
http://www.qualitymall.org/products/prod1.asp?prodid=4640
"Away From the Public Gaze" -
http://www.qualitymall.org/products/prod1.asp?prodid=4644
[LGT-National] people with disabilities, voting and Liberty Mutual Ad
http://whatsyourpolicy.com/videos/
National Conversation on Advising Self-Advocacy Groups
You are invited to join us in a National Conversation on Advising Self-Advocacy Groups!
The self-advocacy movement has grown stronger over the years and is here to stay. Success, though, often depends on self-advocates getting the support they need. This support is offered by individuals called "advisors." We understand that advising a self-advocacy group is not always easy. Advisors want to be helpful. But sometimes advisors give too much help, or too little. And sometimes advisors don't give the right kind of help at all. Anybody who advises a self-advocacy group understands how rewarding it can be…and how hard!
So let's talk about it! We are hosting three teleconferences on advising self-advocacy groups: April 7, 2008 – May 5, 2008 – June 2, 2008. All will begin at 3pm ET and run for approximately 90 minutes each.
Each teleconference will include a 60 minute panel presentation and a 30 minute Question and Answer discussion. The panel participants will include advisors and self-advocates. We will learn a lot from these participants. Scroll down to read about the topics that will be discussed during each session.
The registration fee will be $25 per teleconference for ONE phone line. If you use a speaker phone you can gather people around and listen together! Additional lines will be $25 each.
If you register for all three teleconferences, you will pay only $20 per teleconference or $60 total! Additional lines will also be $20 each. So, it pays to register for all three!
To register for these teleconferences you can go to our website at www.theriotrocks.org and follow the link
Or you can download the registration form directly here: http://www.hsri.org/leaders/theriot/riot-teleconf-registration.pdf
For each session, the registration deadline is one week prior to the scheduled teleconference. Don't miss the cut-off!
Come join us for the first National Conversation on Advising Self-Advocacy Groups! Register Now!!
The topics we will cover during each session are described below:
Teleconference #1: The Nuts and Bolts of the Self-Advocacy Movement;
April 7, 2008 – 90 minutes (3pm ET);
Registration Deadline: March 31, 2008
Teleconference #2: The Advisor- Coach, Guide or Doer? May 5, 2008 – 90 minutes (3pm ET); Registration Deadline: April 28, 2008
Relationship between person's role as an advisor and their real life roles - conflicts?
Teleconference #3: Growing with the Self-Advocacy Movement;
June 2, 2008 - 90 minutes (3pm ET);
Registration Deadline: May 26, 2008
Warm regards, The Riot! Staff
National ADA Symposium & Expo/Assistive Technology Fair
Hosted by the Network of DBTAC-ADA Centers
May 12-14, 2008 - America's Center - St. Louis, MO
http://www.adasymposium.org/
The National ADA Symposium is an annual three day conference on the Americans with Disabilities Act and related disability laws that has earned the reputation as the most comprehensive event available on the ADA. Each year, the ADA Symposium brings representatives from key federal agencies involved in implementing the ADA including the U.S. Department of Justice, the U.S. Access Board and the EEOC to provide comprehensive training and updates. All Symposium presenters are nationally recognized experts in their fields.
The ADA Symposium offers break-out sessions on a wide range of topics. Registrants select courses to create a schedule that reflects their interests and needs. A Pre-Conference is offered to provide both introductory and advanced sessions. A hallmark of the National ADA Symposium is the opportunities for networking and problem solving among participants. Social activities such as the Evening Reception and table-top discussion areas in the large EXPO Hall provide an atmosphere that encourages interaction.
The National ADA Symposium features an EXPO Hall filled with disability related products and services, an Assistive Technology Fair and demonstrations such as wheelchair golf.
Access the URL to read more about the session schedule and registration.
FEEL THE POWER OF THE DISABILITY VOTE!
Celebrate the18th Anniversary of the ADA at a National Presidential Candidate Forum on Disability Issues
Saturday, July 26, 2008 - Veteran's Memorial, Columbus OH
Free! Everyone welcome!
Hosted by: Ohio Disability Vote Coalition and major national sponsors
Additional information will be coming
New Blog Logs Crimes against People with Disabilities
From Connie Kuusisto
With the exception of occasional high profile cases reported by the mainstream media, little attention is paid to the issue of crime against people with disabilities. This lack of attention, and the corresponding failure of our society to address the issue, has a devastating effect on our largest "minority" group. But too few people know. It's a dirty little secret.
A new blog has been created to address this very issue. Simply named "Crimes Against People with Disabilities," - http://kuusisto.typepad.com/crimes_against_people_wit/ the aim of this blog is to increase awareness of the general public by creating a clearinghouse - a place to publicly record narratives of abuse against people with disabilities - and a place to collect the work of disability advocates and experts in the field.
These narratives might be first person accounts or associated stories drawn from the news media or the internet. They might be links to blogs or links to announcements concerning public policy and law enforcement initiatives aimed at addressing these problems. Other posts might include research articles or bibliographies about these issues. This is meant to be a cooperative effort. Participation is encouraged.
Above all else it's safe to say that the gathering of this information will be timely. Hopefully it will serve a purpose. In the words of Betty Friedan, on the Women's Movement, "We couldn't possibly know where it would lead, but we knew it had to be done."
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.