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]

IN THIS ISSUE:

• [nectac-enotes] NECTAC eNotes - January 25, 2008
• Voting Laws & Regulations  Update:  Voting and Polling Place Accessibility
• Employer Resources for Federal Employment Update:  Increasing the Employment of People with Disabilities in the Federal Work Force
• Federal Employer Resources  Update:  Federal Disability Workforce Consortium (FDWC)
• Want to know how your state is doing regarding the implementation of the No Child Left Behind Act (NCLB)?
• The American Academy of Family Physicians (AAFP) has launced a web-based tool designed to recruit motivated consumers who will advocate for the family health issues they care about.
• National Institute of Health has posted a "Request for Information" on Fragile X
• "Aligning High School Graduation Requirements with the Real World"
• For information about adaptive equipment
• Interactive Online Medicare Health Plan Tracker with Updated 2008 Medicare Advantage and Stand-Alone Drug Plans Data
• Resources on Health Care and Economic Downturns
• Medical Care in Nursing Facilities?- Nursing Residents' 2007 Clinical Characteristics.  Information Bulletin #239 (1/08)
• Proposed Rule to Allow Medicaid Beneficiaries to Control Personal Assistance Services
• Disability is Natural Free Press
• Resources
• It’s Time To Transition! A Workbook for Young Adults, Their Families, and Their Medical Providers
• Join the Transition List
• [LGT-National] Disability, PepsiCo and the SuperBowl
• [fridayschildnews] Friday's Child: January 25, 2008
• Notice of Meetings: Telecommunications Act Accessibility Guidelines; Electronic and Information Technology Accessibility Standards
• DOL Annual Report, Fiscal Year 2007 Performance and Accountability Report

[nectac-enotes] NECTAC eNotes - January 25, 2008

Current and past issues of eNotes can be viewed online at http://www.nectac.org/enotes/enotes.asp

DisabilityInfo.gov
Voting Laws & Regulations  Update:  Voting and Polling Place Accessibility

The law requires every precinct in the country to have at least one voting machine or system accessible to persons with disabilities, including those with vision impairments. Access is required so that persons with disabilities have the same opportunity for participation, including privacy and independence, afforded other voters. This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=238.

Employer Resources for Federal Employment Update:  Increasing the Employment of People with Disabilities in the Federal Work Force

A comprehensive report addressing strategies to reverse the declining participation rate of federal employees with targeted disabilities. The entire report may be downloaded in .pdf format by clicking here - http://www.eeoc.gov/federal/report/pwtd.pdf. This information has recently been updated, and can be accessed by visiting the following link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5135.

Federal Employer Resources  Update:  Federal Disability Workforce Consortium (FDWC)

FDWC's mission is to improve the current landscape of employment for people with targeted disabilities within the Federal workforce. The Consortium seeks to expand the current pool of talent within the Federal workforce through improving recruiting, hiring, retention, and advancement of employees with disabilities, especially those with targeted or more severe disabilities. This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5135.

Family Voices of North Dakota e-News
Want to know how your state is doing regarding the implementation of the No Child Left Behind Act (NCLB)? 

The U. S. Department of Education has created a new website that provides state-by-state progress on NCLB.  "Dashboards" present snapshots percentage of students with disabilities and on school progress on graduation rates, math and science achievement and other data.  The website can be accessed at http://www.ed.gov/nclb/accountability/results/progress/index.html

The American Academy of Family Physicians (AAFP) has launched a web-based tool designed to recruit motivated consumers who will advocate for the family health issues they care about.

The new site, The Family Health Advocate, shares information on issues such as the cost of health insurance and patient-centered medical homes, providing links for consumers to contact their elected officials and tips for making effective contact. Consumers can sign up to receive Action Alerts on issues, as well as a monthly e-newsletter. Go to http://www.familyhealthadvocate.org.

National Institute of Health has posted a "Request for Information" on Fragile X.

As noted in the language, "The purpose of this request for information is to seek input from the scientific community, health professionals, patient advocates, and industry related to future research priorities in the genetically related disorders of Fragile X syndrome, Fragile X Tremor, Ataxia Syndrome, Premature Ovarian Failure and other relevant conditions associated with FMR1 gene function." Comments are due to NIH by March 31, 2008. For further information, please go to: 
http://grants2.nih.gov/grants/guide/notice-files/NOT-HD-08-003.html

"Aligning High School Graduation Requirements with the Real World" 

Achieve, Inc., a bipartisan, non-profit organization formed by the nation's governors and business leaders in 1996, developed this December 2007 policy brief featuring lessons learned by states that have put higher graduation requirements in place. It addresses challenges of policy design as well as strategies for implementation, communication and coalition building. For more information go to http://www.achieve.org/files/AchievePolicyBriefDec18.pdf

For information about adaptive equipment

(and much more) family members with disabilities might need to participate in winter sports, call the National Center on Physical Activity & Disability at 1-800-900-8086 or visit www.ncpad.org.

Interactive Online Medicare Health Plan Tracker with Updated 2008 Medicare Advantage and Stand-Alone Drug Plans Data

Kaiser Also Issues New Report on Medicare Special Needs Plans

Medicare Advantage plans now cover about 9 million of the 44 million people in the Medicare population, up from about 6 million in 2006. The rapid enrollment growth among Medicare Advantage plans is sparking debate in Congress about appropriate payment levels.

To help people monitor changes in private plans in Medicare, the Kaiser Family Foundation has updated its interactive online resource, the Medicare Health and Prescription Drug Plan Tracker, with new 2008 data, available at http://www.kff.org/medicare/healthplantracker/index.jsp. The Tracker provides local, regional and national information about Medicare Advantage plans, including HMOs, regional and local PPOs, private fee-for-service plans, and special needs plans.  It also includes current information on stand-alone prescription drug plans offered, along with updated 2007 enrollment data for Medicare Advantage and stand-alone prescription drug plans. The online tool can be used to monitor changes in Medicare Advantage enrollment over time within counties, states and nationally.

In addition, the Foundation has released a new report examining special needs plans, a type of Medicare Advantage plan that serves individuals who are institutionalized, individuals covered under both Medicare and Medicaid, or those with chronic or disabling conditions. Enrollment in special needs plans has doubled in the past year, and many expect continued enrollment growth with the emergence of new plans in 2008. Prepared for the Foundation by researchers at Mathematica Policy Research, the report describes the history of these plans, how they fit into the larger Medicare Advantage marketplace, and how to assess whether special needs plans are performing differently from other Medicare Advantage plans.

The report, “Do We Know If Medicare Advantage Special Needs Plans Are Special?” is available online at http://www.kff.org/medicare/7729.cfm.

For more information, please contact Kirran Syed at ksyed@kff.org or 202-347-5270 or Craig Palosky at cpalosky@kff.org or 202-347-5270.

Resources on Health Care and Economic Downturns

With growing economic anxiety, federal and state policymakers are urgently discussing how to soften the impact of an economic downturn.  As unemployment rises, the uninsured population is likely to increase, straining the nation's health coverage programs for low-income families.  Analysis of fiscal relief provided to state Medicaid programs in 2003 - an idea also under consideration now - suggests that federal assistance to the states via increased Medicaid funding helped forestall some coverage cutbacks by the states. 

The Kaiser Family Foundation’s Commission on Medicaid and the Uninsured studied and tracked health coverage during past economic downturns and resulting in several publications that may be useful as policymakers decide how to deal with these issues once again:

• A policy brief examining the impact of providing federal assistance to states via an increased federal match rate of Medicaid funds http://www.kff.org/medicaid/7434.cfm.
• A brief examining the relationship between rising unemployment and the nation’s uninsured population http://www.kff.org/uninsured/6011-index.cfm .
• A brief examining the relationship between unemployment and Medicaid http://www.kff.org/medicaid/4026-index.cfm .
• A fact sheet reviewing the impact of the fiscal relief provisions for Medicaid http://www.kff.org/medicaid/7073.cfm. 
• A background piece looks at the role Medicaid plays in state budgets and the impact of declining state revenues on Medicaid http://www.kff.org/medicaid/4024-index.cfm. 
• A compilation of many studies examining Medicaid’s role and impact on state economies, including estimates of the economic stimulus derived from Medicaid spending, and analysis of the adverse effects on the state economy from reducing Medicaid spending http://www.kff.org/medicaid/7075a.cfm .
• A series of case studies examining how eight states (Alabama, California, Colorado, Massachusetts, Michigan, New York, Texas, and Washington) from around the nation responded to their budget crises from 2003 to 2005, with a focus on how Medicaid and State Children's Health Insurance Programs were affected http://www.kff.org/medicaid/7324.cfm .

For further information on these issues, please contact us at kcmu@kff.org

Medical Care in Nursing Facilities?- Nursing Residents' 2007 Clinical Characteristics.  Information Bulletin #239 (1/08)

CMS' 2007 Nursing Home Data Compendium was recently released.  In the previous Information Bulletin #238, we looked at the distribution of people in these institutions by Activity of Daily Living and Cognitive Impairments. In this Information Bulletin, we will break down some of the findings. To review how your State measures up, go to http://www.cms.hhs.gov/CertificationandComplianc/12_NHs.asp#TopOfPage, scroll down to Nursing Home Data Compendium 2007- Parts 1 & 2 .

Are People Receiving Medically Care in Nursing Facilities?
   
Many of the following are life endangering conditions, and many of them are actually caused by improper medical care and treatment in the nursing facilities.

They all demonstrate that people are at significant risk to their health and safety when they are in a nursing facility.

A.  Pressure Ulcers

CMS counted these only if the pressure sore was at stage 2 or greater.

1. Nationally, half of ALL nursing facilities had more than 7.9% of its residents with pressure ulcers at stage 2 or greater. (Table 3.7).
2. The following States, in descending order, had the highest percentages of nursing facilities whose residents who had these pressure ulcers: DC, New Jersey, Maryland, California, Virginia, Nevada, New York, S. Carolina

B.  Use of Physical Restraints

CMS writes that it "conservatively considered only" people whom the nursing homes reported were in a trunk restraint, limb restraint, or some sort of restraining chair and in such restraint at least once in the 7 days prior to the assessment.  CMS noted that it did not report use of bed rails.

• Nationally, half of ALL nursing facilities had more than 3 % of its residents who were in these physical restraints.  (Table 3.11)

The following States, in descending order, had the highest percentages of nursing facilities whose residents were in physical restraint, and all of these States were at least twice the national average: Arkansas, Louisiana, Oklahoma, California, Mississippi, North Carolina

C.  Weight Loss

CMS identified people who had a weight loss of more than 5 percent in the 30 days prior to the assessment or more than 10% weight loss in last 180 days.  CMS excluded residents with end-stage disease or receiving hospice care.

• Nationally, half of ALL nursing facilities had more than 8.0% of its residents who had such weight loss.  (Table 3.17).
• The following States, in descending order, had the highest percentages of nursing facilities whose residents who had such weight loss: Wyoming, Vermont, Washington, Oregon, Kentucky

D.  Severe Bladder or Bowel Incontinence

CMS identified and counted only persons who were incontinent of bladder or of bowel on almost all occasions.  This is a measure of severe incontinence.

• Nationally, half of ALL nursing facilities had 32.9% of its residents who had severe bladder or bowel incontinence. (Table 3.19).
• The following States, in descending order, had the highest percentages of nursing facilities whose residents who had severe bladder or bowel incontinence on almost all occasions: South Carolina, Hawaii, DC, California, Georgia, North Carolina, Virginia, Mississippi

What are Older American and Disability Advocates doing to correct these four situations?  Even if your State was not listed, go to the above CMS website and find out how your State compares.

Each of the above - pressure sores, physical restraints, weight loss, and severe bladder or bowel incontinence - is very dangerous!

Pressure sores, weight loss, and the sequelae of incontinence are all treatable conditions that if not properly treated can be life threatening.

Older American and disability advocates should be meeting with and pressuring your State Medicaid officials and your State Health Departments for letting these conditions go on, and to find out why they are occurring in such numbers and in many cases year after year.

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.  

Disability is Natural Free Press

January 2008 - Happy New Year! View online at www.disabilityisnatural.com/email/2008-01.htm.

One of the activities of the American Academy of Pediatrics is its federally funded National Center of Medical Home Initiatives for Children with Special Needs.  The mission of this Center is to support physicians, families, and other medical and non-medical providers who care for children with special needs so that they have access to a medical home.  The Medical Home web site include a section on health care transition. See:http://www.medicalhomeinfo.org/health/trans.html

It’s Time To Transition! A Workbook for Young Adults, Their Families, and Their Medical Providers.

This workbook was developed by Laura Pickler, MD, MPH to help organize the medical transition process into a smooth and successful move from pediatric focused to adult focused health care. The workbook is available on the web as a PDF at: http://www.cdphe.state.co.us/ps/hcp/transition/workbook.pdf

“It's Time To Transition" was initially drafted to focus on the medical information transfer required for transitioning young adults in 2004.  My experience with official medical records requests was that if they ever were sent they came months after they were needed in the adult system and often consisted of reams of paper that were impossible to cipher through and often illegible.  Many key diagnostic reports were lost or just duplicated at the expense of the patient or their family.  I piloted the workbook in my pediatrics and adult clinics for special needs individuals and have shared it with the Spina Bifida Association, Family Voices, Colorado Department of Education Transition programs, and during a number of parent advocacy retreats.  A paper format was favored over electronic due to the needs of my patients (many did not have reliable computer access) and the diversity of electronic medical record formats of the adult medical community.  A similar electronic document is available privately if families are able to afford this service (Lynxcare information at www.lynxcare.net.) 

The workbook really operates best under a Medical Home model which assumes that one provider is inadequate to care for a young adult with special needs.  The young person should be making a change from one system of care to another.  The primary care physician may coordinate efforts but may not be the central person doing most of the medical management.  The workbook is meant to be flexible for the young person's individual needs with unnecessary pages discarded in the workbook format.  The goal is that all the information should fit in no larger than a 1 inch three ring binder.  Ideally the young adult, their main provider of care (or a representative from that office like a care coordinator, RN or MSW) and responsible adults (parents) all work together over about a year to complete the workbook.  My experience is that it may take that long to compile the information and that gaps in readiness are frequently identified in the process of putting everything together.

Transition should occur only when the patient is ready, not at any predetermined chronological age.  Not during times of acute illness, diagnostic uncertainty, major psychosocial stress or change.  I also don't recommend changing all medical providers at the same time.  If there are multiple specialists involved they should make the change to their adult counterparts in an intentional, coordinated way.  In my practice primary care usually transitions last.  

Laura Pickler, MD, MPH, Assistant Professor of Family Medicine and Pediatrics, The Children's Hospital, Denver,University of Colorado at Denver Health Sciences Center

Join the Transition List

The Transition list is open to all with an interest in the issue of health care transition.  If you know of others who would like to subscribe, let then know that they can sign-up for the list themselves. They can join by going to the list sign-up Web page:http://hctransitions.ichp.ufl.edu/listserv.html They enter their e-mail address and name and hit the subscribe button. When their subscription is approved, they get a set of instructions on how to use the list and access archived messages. (Members need to be approved in order to prevent spammers from joining the list, and from posting unwanted messages.  Also, all postings are reviewed by a moderator before being included in a digest.

VCU-RRTC e-Newsletter
Worksupport.com e-Newsletter

Information, resources and research about work and disability issues - http://www.worksupport.com/news/ws_011408.html

[LGT-National] Disability, PepsiCo and the SuperBowl

Commercial and Behind the Scenes at http://www.pepsi.com/bobshouse/

Responses on YouTube at http://www.youtube.com/watch?v=ffrq6cUoE5A

"Bob's House" was created by and features two PepsiCo employees who are members of EnAble, the employee network that promotes a more inclusive workforce.

[fridayschildnews] Friday's Child: January 25, 2008

You can download a print version of this newsletter at http://www.familyvoices.org/pub/fc/FC_2008-01-25.pdf.  Or click here to view online version of newsletter - http://www.familyvoices.org/pub/fc/html/Friday's%20Child.htm.

The Architectural and Transportation Barriers Compliance Board (Access Board) established the Telecommunications and Electronic and Information Technology Advisory Committee (Committee) to assist it in revising and updating accessibility guidelines for telecommunications products and accessibility standards for electronic and information technology. The next committee meetings, which are all conference calls, will focus on outstanding issues which have not yet been resolved. The conference calls are scheduled for every Tuesday, starting on January 29, 2008, through April 1, 2008. Calls will begin at 1 p.m. and end at 4 p.m. Eastern time. The conference call on March 11 is scheduled from 1 p.m. until 6 p.m. Eastern time.

The agendas, instructions (including information on captioning), and dial in telephone numbers are available at http://www.access-board.gov/sec508/update-index.htm.  Notices of future meetings will be published in the Federal Register.  The committee may cancel or shorten any conference call before it is scheduled to take place depending on the needs of the committee and its progress in discussing and resolving outstanding issues. If a conference call is canceled, a notice will be posted at http://www.access-board.gov/sec508/update-index.htm.

All conference calls are open to the public and interested persons can dial in and communicate their views during public comment periods scheduled during the calls. Participants may call in from any location of their choosing.

DATES: The conference calls are scheduled for every Tuesday from January 29, 2008, through April 1, 2008. Calls will begin at 1 p.m. and end at 4 p.m. Eastern time. The conference call on March 11 is scheduled from 1 p.m. until 6 p.m. Eastern time.

FOR FURTHER INFORMATION CONTACT: Timothy Creagan, Office of Technical and Information Services, Architectural and Transportation Barriers Compliance Board, 1331 F Street, NW., suite 1000, Washington, DC 20004-1111. Telephone number: 202-272-0016 (Voice); 202-272-0082 (TTY). Electronic mail address: creagan@access-board.gov.

DOL Annual Report, Fiscal Year 2007 Performance and Accountability Report

U.S. Department of Labor - http://www.dol.gov/_sec/media/reports/annual2007/

This is the first opportunity to report progress under our FY 2006-2011 Strategic Plan, which articulates the Department’s program performance priorities, strategies, and targets for the years ahead and identifies four strategic goals that serve as the basis of this annual report:

• A Prepared Workforce — to provide training and services to new and incumbent workers and supply quality information on the economy and labor market.
• A Competitive Workforce — to enhance the effectiveness and efficiency of the workforce development and regulatory systems that assist workers and employers in meeting the challenges of worldwide competition.
• Safe and Secure Workplaces — to ensure that workplaces are safe, healthful, and fair; protect workers’ rights to wages due them; protect workers’ equal opportunity rights; and protect veterans’ employment and re-employment rights.
• Strengthened Economic Protections — to protect and strengthen economic security; ensure union transparency; and secure pension and health benefits

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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.