Banner for Monday Morning in Washington, DC

Volume 08 Issue 20 May 19, 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]

IN THIS ISSUE:

Grants Available for Families Struggling with Child Health-Related Expenses
       
Deadline: Open

The UnitedHealthcare Children's Foundation (http://uhccf.org/) has announced that new grants are available to help children who need critical health care treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans.

UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics, and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 each for child medical services and equipment by completing an
online application at the UHCCF Web site.

To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States, and be covered by a commercial health benefit plan.

RFP Link: http://fconline.foundationcenter.org/pnd/15013057/uhccf
For additional RFPs in Children and Youth, visit: http://foundationcenter.org/pnd/rfp/cat_children.jhtml

Study Provides New Data on Infants and Children With Special Health Care Needs-"As demonstrated in earlier studies, CSHCN [children with special health care needs] require and use more health care services, as well as incur higher expenses. Our analysis shows that this also holds true for IYCSHCN [infants and young children with special health care needs]," state the authors of an article published in the April-June 2008 issue of Infants and Young Children: An Interdisciplinary Journal of Special Care Practices. Houtrow AJ, Kim SE, Newacheck P. 2008. Health care utilization, access, and expenditures for infants and young children with special health care needs. Infants and Young Children: An Interdisciplinary Journal of Special Care Practices 21(2):149-159. Abstract available at http://www.iycjournal.com/pt/re/iyc/abstract.00001163-200804000-00007.htm.  Readers: More information is available from the following MCH Library resource: - Knowledge Path: Children and Adolescents with Special Health Care Needs at http://www.mchlibrary.info/KnowledgePaths/kp_CSHCN.html

A new Commonwealth Fund Publication (CMWF) on the Assuring Better Child Health and Development (ABCD) initiative from the National Academy for State Health Policy (NASHP)-

The second phase of the Assuring Better Child Health and Development (ABCD) initiative--supported by The Commonwealth Fund and administered by the National Academy for State Health Policy (NASHP)--provided five states with the opportunity to develop and test strategies for preventing developmental delays and providing early intervention services. Improving the Delivery of Health Care That Supports Young Children's Healthy Mental Development: Update on Accomplishments and Lessons from a Five-State Consortium, by NASHP's Neva Kaye and Jill Rosenthal, shows how these states were able to improve screening and follow-up services for young children by upgrading insurance coverage, reforming reimbursement policies, and boosting health system performance. Read the report to learn more, and also be sure to check out the ABCD Resource Center.

The Bright Futures website is now renovated for the 3rd edition, including free access to the Guidelines posted by chapter and hyperlinked references.  http://brightfutures.aap.org

[nectac-enotes]
NECTAC eNotes - May 16, 2008

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

  1. Notice of Proposed Rulemaking - Assistance to States for the Education of Children With Disabilities and Preschool Grants for Children With Disabilities
    Source: U.S. Department of Education, Office of Special Education and Rehabilitative Services - May 13, 2008
  2. New RAND Study on Investing in Early Childhood Programs
    Source: RAND Corporation - May 12, 2008
  3. The Power of Family Conversation
    Source: Harvard Education Letter - May/June 2008
  4. Spanish Version of "Cultivating Readers" Available - Cultivando el hábito de la lectura
    Source: National Center for Family Literacy - Retrieved May 14, 2008

 

Medicaid Spending by State of Residence (NEW)

New data from CMS's Office of the Actuary on total Medicaid spending estimates by state of residence for 1995 through 2004 are also available for all states. Medicaid Spending by State of Residence - http://cme.kff.org/Key=14237.Z4.F.C.KT6y0p

Application Available for NCD DD Project

The application for NCD’s research opportunity for the Developmental Disabilities Assistance and Bill of Rights Act: Implementation Evaluation and Recommendations for Reauthorization project is now available at http://www.ncd.gov/research_opportunity/dd_act_application.html.

The National Center of Medical Home Initiatives for Children with Special Needs has updated its webpages on Learning Collaboratives

Shriners Hospital for Children Project and Quality Improvement-The National Center of Medical Home Initiatives for Children with Special Needs recently updated its webpages on Learning Collaboratives- Shriners Hospitals for Children Project and Quality Improvement. To learn more about the following To learn more about the Shriners Hospitals for Children and the process that guides them in their quality improvement work to create enhanced linkages and communication with medical homes, please visit: http://www.medicalhomeinfo.org/model/Medicalhomeproject.html. To learn more about Quality Improvement tools please visit:http://www.medicalhomeinfo.org/tools/qualityimprovement.html

Youth with Disabilities Sharing Their Success Strategies in School and Employment

New Videos from the New England ADA Center and No Limits Media Featuring-The New England ADA Center and No Limits Media have released informative videos featuring students with disabilities sharing their strategies for successfully staying in school, graduating and getting jobs. Students reveal their struggles with self-reporting their disability, and negotiating accommodations in school and at work. These videos can be used as part of trainings (each video is 7-9 minutes) and shared with students and other professionals. The videos are open captioned and can be viewed at: http://adaptiveenvironments.org/neada/site/student

Inclusion International's Newsletter for April- May 2008. 

You can access this and previous issues on the website (www.inclusion-international.org).

Sponsor a Family to Attend the National Respite Conference!

The Iowa Respite and Crisis Care Coalition in collaboration with the ARCH National Respite Network is hosting the next annual National Respite Conference in Des Moines, Iowa, September 4-6, 2008.  Our goal is to have full participation by family caregivers, parents, and consumers. Not only will families have access to the latest legislative and policy information on respite and be able to provide input, they will have access to information about lots of model respite programs and caregiver initiatives in their communities, and be able to learn how to advocate effectively. Please consider sponsoring a  parent, family caregiver or consumer so that they can attend the National Respite Conference in September by visiting this user friendly website to make a donation. Any amount would be greatly appreciated and will help us reach our goal of meaningful consumer participation.  http://www.firstgiving.com/ARCHNRC

There are other ways you can support these efforts as well. If you would like to be a conference sponsor or exhibit at the Disability Trade Show on Saturday, Sept. 6, 2008, you can download the information by cutting and pasting the following address in your browser's search window: http://www.irccc.com/displaycommon.cfm?an=1&subarticlenbr=72

Reinventing Quality Conference 2008 - Time to Register

Please help us spread the word by forwarding this announcement to any lists or individuals who may have interest -- check out the list  of speakers and sessions!  This is going to be a fabulous event ... hope to see you there!

You are invited to the national Reinventing Quality Conference, this year being held on the beautiful Baltimore waterfront, August 10-12. This conference features leading edge programs and practices in quality services for persons with developmental disabilities. For the conference brochure, list of speakers, schedule, hotel and registration information, visit our web site at: http://www.reinventingquality.org

NCD Releases a Comparative Analysis of Disability Laws in the United States to the United Nations Convention on the Rights of Persons with Disabilities

The United Nations Convention on the Rights of Persons with Disabilities entered into force on May 3, 2008. In order to clarify the potential impact of that Convention's articles, the National Council on Disability (NCD) is pleased to release: Finding the Gaps: A Comparative Analysis of Disability Laws in the United States to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This independent analysis was commissioned by NCD to help increase understanding of how the CRPD varies from, or is consistent with, U.S. disability laws.  We hope that it will prove to be a useful tool as those responsible for determining public policy on possible support or ratification of this treaty grapple with the relative merits of that choice.

The document can be found at: http://www.ncd.gov/newsroom/publications/2008/doc/ncd_crpd_analysis.doc.
HTML and PDF formats will be posted shortly at: http://www.ncd.gov/newsroom/publications/index.htm.

REFERENCE POINTS:
New Resources from NCWD

YOUTH AND DISABILITY DISCLOSURE: THE ROLE OF FAMILIES AND ADVOCATES
This info brief highlights NCWD/Youth's The 411 on Disability Disclosure and explores the role families and advocates play in helping youth understand the importance of appropriate disability disclosure. To review this document, go to http://www.ncwd-youth.info/resources_&_Publications/information_Briefs/issue21.html

VOCATIONAL ASSESSMENT AND ITS ROLE IN CAREER PLANNING
This info brief discusses career planning and vocational assessment for transition-age youth. It focuses on the vocational domain and how assessment activities support career related activities. To review this document go to http://www.ncwd-youth.info/resources_&_Publications/information_Briefs/issue20.html  

TUNNELS AND CLIFFS: A GUIDE FOR WORKFORCE DEVELOPMENT PRACTITIONERS AND POLICYMAKERS SERVING YOUTH WITH MENTAL HEALTH NEEDS
This brief document summarizes the challenges faced by youth with mental health needs when they enter inappropriate service tunnels dictated by their point of entry and when they encounter transition cliffs as they age out of youth systems and attempt to access adult services. It offers examples of emerging promising practices related to career preparation and employment for youth and offers an action plan to make the coordination of services a cross-systems priority. For more information go to http://www.ncwd-youth.info/resources_&_Publications/short_Cuts/004.html

NAVIGATING TUNNELS AND CLIFFS: EMPOWERING FAMILIES AND CAREGIVERS TO ASSIST YOUTH WITH MENTAL HEALTH NEEDS IN PREPARING FOR WORK
Another brief document that summarizes the challenges facing families and caregivers of youth with mental health needs and the resources available to them in helping a young person prepare for a career and community life. It offers an action plan for parents and caretakers on how to make coordination and collaboration of mental health services and career preparation a priority. http://www.ncwd-youth.info/resources_&_Publications/short_Cuts/005.html    

ROAD TO SELF-SUFFICIENCY: A GUIDE TO ENTREPRENEURSHIP FOR YOUTH WITH DISABILITIES
This Guide was developed to serve as a resource for organizations working with youth on career exploration and employment options, and policymakers who support youth programs through policy and practice. The Guide shows how entrepreneurship education can be implemented in programs and offers suggestions on how to introduce self-employment as an option for all youth, including youth with disabilities. In addition, this Guide offers a set of appendices with valuable resources and references. Designed for organizations and practitioners working with all youth, policy-makers, and parents looking for resources and information on economic self-sufficiency for their adolescent children. The Entrepreneurship Guide can be found at http://www.ncwd-youth.info/resources_&_Publications/entrepreneurship_guide.html

REFERENCE POINTS:
Request for Comments: RSA's Strategic Performance Plan Goals and Objectives

RSA is developing a Vocational Rehabilitation Strategic Performance Plan for the vocational rehabilitation program in order to ensure a long-term strategic focus on program performance, performance improvement, and outcomes for individuals with significant disabilities. Previously, RSA invited comments on the Plan's draft goals and objectives.  At this time, RSA is inviting comments on the draft measures corresponding to the Plan's goals and objectives. Please click on the following link to connect to the Plan and instructions for submitting comments on the draft measures: http://www.ed.gov/about/offices/list/osers/rsa/new.html

REFERENCE POINTS: 
Special Needs Parent Toolkit

The DOD Special Needs Tool Kit is designed to help military families and others with special needs children navigate the maze of medical and special education services, community support and benefits and entitlements. The Toolkit is broken down into six colorful modules that can be easily downloaded and printed. The Toolkit can be found at http://www.militaryhomefront.dod.mil/portal/page/mhf/MHF/MHF_DETAIL_1?section_id=20.40.500.570.0.0.0.0.0&content_id=218947

New products have been published on the Quality Mall web site:

"Social Inclusion at Work" - http://www.qualitymall.org/products/prod1.asp?prodid=4853

"Quality of Life:  Applications Across Individuals, Organizations, Communities, and Systems" - http://www.qualitymall.org/products/prod1.asp?prodid=4854  

"Employer Incentives for Hiring Individuals with Disabilities" - http://www.qualitymall.org/products/prod1.asp?prodid=4876

"Disability:  Dispelling the Myth" - http://www.qualitymall.org/products/prod1.asp?prodid=4877

"Workforce status and outcomes assessment" - http://www.qualitymall.org/products/prod1.asp?prodid=4229

"The Illinois Direct Support Professional Workforce Initiative Project Web Site" - http://www.qualitymall.org/products/prod1.asp?prodid=4234

"Wisconsin Wage/Benefits Survey of Direct Support Workers" - http://www.qualitymall.org/products/prod1.asp?prodid=4241

"Voices from the trenches: The world of the certified nursing assistant" - http://www.qualitymall.org/products/prod1.asp?prodid=4248

"Stand up and tell them: Views from the frontline of long-term care" - http://www.qualitymall.org/products/prod1.asp?prodid=4251

DisabilityInfo.gov
Employing People with Disabilities  Update

Includes several new resources for employers, including Best Practices of Private Sector Employers and Workers in Recovery: Effective Practices. 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=13.

DisabilityInfo.gov
Job Training in Employment Update:  Advancing Your Career (ETA)

Programs, resources and online tools from U.S. Department of Labor Employment and Training Administration on training and career advancement. This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5145.

DisabilityInfo.gov 
Employment Research & Statistics Update: Community Employment Research Reports

Research reports on community employment for people with disabilities from the Institute for Community Inclusion at UMass Boston.
This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5124.

DisabilityInfo.gov
Emergency Preparedness in Employment Update: Emergency Preparedness Initiative (EPI)

Ensures that emergency managers address disability concerns and that people with disabilities are included in all levels of emergency preparedness planning, response and recovery. This information has recently been updated, and can be accessed by visiting this link:  http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5150.

DisabilityInfo.gov 
School to Work Update

Includes several new resources relating to young people, including Advising Youth with Disabilities on Disclosure and Career Voyages. This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5147.

DisabilityInfo.gov
Job Seeker & Employees Update

Includes several new resources including information on Cancer in the Workplace and the Americans with Disabilities Act and Deafness and Hearing Impairments in the Workplace and the Americans with Disabilities Act. This information has recently been updated, and can be accessed by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5067.

Policy Research Brief: Innovative Models and Best Practices in Case Management and Support Coordination

http://ici.umn.edu/products/prb/191/default.html

Residential Facilities: Improved Data and Enhanced Oversight Would Help Safeguard the Well-Being of Youth with Behavioral and Emotional Challenges. GAO-08-346, May 13

http://www.gao.gov/cgi-bin/getrpt?GAO-08-346 Highlights - http://www.gao.gov/highlights/d08346high.pdf

Inspectors Often Overlook Serious Deficiencies at U.S. Nursing Homes,

GAO Report Finds - New York Times  (Requires free, one-time registration) http://www.kaisernetwork.org/fe.cfm?id=8971

Residential Facilities:  Surveys of State Child Welfare, Health and Mental Health, and Juvenile Justice Directors

an E-Supplement to GAO-08-346. GAO-08-631SP, May 13.[Internet only]http://www.gao.gov/cgi-bin/getrpt?GAO-08-631SP

LETTER REPORT
Nursing Homes: Federal Monitoring Surveys Demonstrate Continued Understatement of Serious Care Problems and CMS Oversight Weaknesses. - GAO-08-517, May 9

http://www.gao.gov/cgi-bin/getrpt?GAO-08-517 Highlights - http://www.gao.gov/highlights/d08517high.pdf

TESTIMONY
Congressional Review Act: Applicability to CMS Letter on State Children's Health Insurance Program. - GAO-08-785T, May 15
http://www.gao.gov/cgi-bin/getrpt?GAO-08-785T Highlights - http://www.gao.gov/highlights/d08785thigh.pdf

The Nation's Long-Term Fiscal Outlook: April 2008 Update. GAO-08-783R, May 16

http://www.gao.gov/cgi-bin/getrpt?GAO-08-783R

Roundtable e-Newsletter - May 13, 2008
Community Services Block Grant Training and Technical Assistance Program: Special State Technical Assistance

Qualified faith-based and other eligible applicants may apply for the Community Services Block Grant Training and Technical Assistance Program: Special State Technical Assistance grant. The purpose of this program is to provide training and technical assistance resources to states to assist them in carrying out corrective action activities for at-risk agencies. The grant will support interventions in cases where an eligible entity is in a crisis situation. It will preclude the need for termination hearings and proceedings by stabilizing eligible entities in crises and correcting programmatic deficiencies, if possible.

The closing date for applications under this announcement is June 20, 2008. Approximately $150,000 will be available for funding. Up to three grants of about $50,000 each will be made.The full announcement can be accessed at
http://www.acf.hhs.gov/grants/open/HHS-2008-ACF-OCS-EZ-0026.html.

The HEATH Resource Center
Funding Opportunities for Related Services Program for Students with Disabilities

The National Center for Special Education Research (NCSER) within the Institute of Education Sciences supports research on related services for students with disabilities.  Under the Individuals with Disabilities Education Act, related services include a variety of special education interventions, such as speech pathology, audiology, and occupational therapy.  Relatively little rigorous research, however, has been conducted to determine the impact of related services for improving student outcomes. Through its Related Services program, IES encourages research on strategies, practices, or programs delivered by related services providers as well as research on school-level procedures and processes that may directly affect the delivery of related services and indirectly affect student outcomes.  The Institute is also interested in proposals to develop or evaluate professional development programs for related services providers. More information about the Related Services program can be found at http://ies.ed.gov/ncser/funding/2009_84324A/index.asp?rfa=rgt08a

Or contact Erin Caffrey, 202-219-2126, erin.caffrey@ed.gov.

[LGT-National]
Protecting Your Rights to Medical Equipment

RADICAL change is occurring in the medical industry and it will directly affect YOU! However, there is something YOU can do about it!

PLEASE forward this email to your network requesting they register and participate in these 2 events.  The goal is to generate 1000 plus calls asking Congress to exempt complex rehab (refer to HR.2231 and S.2931) from Competitive Bidding.

#1. Tuesday, May 20th Kick-Off, 11:00am EDT. Register at http://recp.rm05.net/ctt?kn=2&m=1072605&r=NzI0MjYwNDE2MgS2&b=0&j=MTA3ODM3NDMyS0&mt=1

#2. Thursday, May 22nd – Nationwide Consumer and Clinical Legislative Call-in  Detailed Call-in Day instructions at
http://recp.rm05.net/ctt?kn=1&m=1072605&r=NzI0MjYwNDE2MgS2&b=0&j=MTA3ODM3NDMyS0&mt=1
You will find who your members of Congress are, how to contact them and talking points.

Hosted by: Sunrise Medical
Sponsored by: ADAPT, American Association of People with Disabilities, America Paraplegia Society, Boston Medical Center, Christopher and Dana Reeve Foundation, Cody Unser First Steps Foundation, Frazier Rehab and Neuroscience Center, Kennedy-Krieger Institute, Miami Project to Cure Paralysis, National Council on Independent Living, National Spinal Cord Injury Association, New Mobility Magazine, Ohio Governors Council on People with Disabilities, Paralyzed Veterans Association, Rehabilitation Hospital of Indiana, Sam Schmidt Paralysis Foundation, Self Advocates Becoming Empowered, Shepherd Center, The Rehabilitation Center at University of Utah Healthcare, United Spinal Association

AARP Policy & Research Update - Volume 4, Issue 10
State Handbook of Economic, Demographic, and Fiscal Indicators 2008

Up-to-date state-level data on population, poverty rates, per capita state personal income, state tax rates, property tax relief programs, and state and local government revenues and spending programs are provided in this seventh edition of AARP Public Policy Institute's easy-to-use, biennial reference book by David Baer. More on this report - http://news.aarp.org/UM/T.asp?A910.52602.5543.25.1560569

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.