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:

• States Receive OSEP Determination Letters on Implementation of IDEA
• NECTAC eNotes - June 20 & 27, 2008
• National Federation of Families for Children’s Mental Health
• Reports Examine Reformation of Post-Acute Care
• Issue Paper Released on New Medicaid Regulations
• AAP releases 3rd Edition of Guidebook
• Social Security Numbers and Identity Theft Risk
• 'Neglected' Infectious Diseases Go Untreated
• Young Adults With Serious Mental Illness: Some States and Federal Agencies Are Taking Steps to Address Their Transition Challenges.
• Family Caregiver Resources
• New Resource Available On Academic and Career Readiness
• Conference and Workshop Updates Added to the TATRA Website
• Medicare and durable medical equipment, prosthetics, orthotics and supplies
• Some Post Olmstead Anniversary Data. Information Bulletin #252 (6/08)
• Study Seeks Participants with Sensory and/or Mobility Impairments
• Emerging Trends and People with Disabilities: Public Consultation
• The Interagency Committee on Disability Research (ICDR) is seeking your input/comments about disability research issues.

The federal Office of Special Education Programs (OSEP) recently issued IDEA progress reports to state departments of education. Officially known as "U.S. Department of Education Determination Letters on State Implementation of the IDEA," the reports indicate if states met requirements of IDEA or need assistance or intervention to meet those requirements.

IDEA is the Individuals with Disabilities Education Act, which provides public education to the nation's nearly 7 million children with disabilities. For funding accountability, states must show that they are meeting the education needs of children with disabilities.

Each state develops its own state performance plan, based on federal guidelines and then submits an annual performance report to OSEP telling how it met the targets of its plan. OSEP sends detailed progress reports to states in June, showing states where they need improvement. To find letters for states, click here - http://www.ed.gov/fund/data/report/idea/partbspap/index.html.

To read more of the PACER eNews go to - http://www.pacer.org/newsletters/enews/current.asp

NECTAC eNotes - June 20 & 27, 2008

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

June 20, 2008 Issue

1. Study Finds Teachers’ Interactions with Children Critical Ingredient for Effective Pre-K Programs
   Source: University of Virginia - Retrieved June 17, 2008
2. New Research Brief: The Temperament Task Orientation Cluster among Preschool Educators
   Source: National Early Childhood Transition Center - June 16, 2008
3. Fact Sheets on 2006 Data for Head Start and Early Head Start Programs
   Source: Center for Law and Social Policy - June 18, 2008
4. Building the Future of Family Involvement
   Source: Harvard Family Research Project - Retrieved June 16, 2008

June 27, 2008 Issue

1. National Infant and Early Childhood Mental Health Systems Summit Materials
   Source: ZERO TO THREE - June 23, 2008
2. Grant Notice - National Center to Improve the Recruitment and Retention of Qualified Personnel for Children with Disabilities
   Source: U.S. Department of Education - June 24, 2008
3. First Quarter 2008 Letters of Clarification from Office of Special Education Programs
   Source: U. S. Department of Education, Office of Special Education Programs - June 24, 2008
4. Help Define Approaches to Professional Development
   Source: National Professional Development Center on Inclusion - June 25, 2008

FVND Share the Wealth E-News week of June 23rd
National Federation of Families for Children’s Mental Health

-When it comes to developing systems of care for children and youth with mental health needs and their families, the National Federation of Families for Children’s Mental Health - http://www.ffcmh.org/index.htm (FFCMH) believes in family-driven care. The organization believes that families have a right to participate in a decision-making role, to choose culturally and linguistically competent services and providers, set goals, monitor outcomes, and partner in funding decisions. FFCMH published the “ Family Guide to Systems of Care ” - http://www.ffcmh.org/Family%20Guide%20to%20Systems%20of%20Care.pdf to inform caregivers and families about how to seek care for children with mental health needs. The content and format are especially helpful because they were determined by families across the country. Check out this useful resource on the FFCMH website - http://www.ffcmh.org/systems.htm

Reports Examine Reformation of Post-Acute Care

Consumer direction of personal assistance services (CD-PAS) is a growing interest throughout the nation. Over the last eight years, federal, state, and local governments devised a solution on how to pay for and deliver services to elderly individuals and persons with disabilities at home, in the workplace, or in more costly nursing facilities. The Kaiser Family Foundation offers a report called “ Consumer Direction of Personal Assistance Services in Medicaid: A Review of Four State Programs ” that discusses a vision and a context for reforming post-acute care. Medicaid’s aid in providing CD-PAS to four states (California, Colorado, New York, and Virginia) is discussed as well as system barriers and informing and empowering health care consumers.

Issue Paper Released on New Medicaid Regulations

In the past year, six new regulations have been added to the Medicaid program, causing considerable controversy around the nation. The Kaiser Commission on Medicaid and the Uninsured has published a helpful issue paper entitled Medicaid: Overview and Impact of New Regulations to help explain current policy, the proposed regulatory changes, and the impact and issues with these changes.

AAP releases 3rd Edition of Guidebook

Bright Futures Guidelines for Health Supervision of Infants, Children, and Adolescents , published by the American Academy of Pediatrics (AAP) with funding from the Maternal and Child Health Bureau (MCHB), provides guidelines to anyone ranging from healthcare professionals to school nurses. The 3rd edition, which has just been made available, is organized to provide quick, easy access to topics such as developmental surveillance and milestones, physical exams, screening procedures, and immunization recommendations. The Bright Futures Guidelines is also available in a pocket guide and PDA format.

Social Security Officials Call for Social Security Numbers To Be Removed From Medicare ID Cards Citing Identity Theft Risk
New York Times  (Requires free, one-time registration) http://www.kaisernetwork.org/fe.cfm?id=9255

'Neglected' Infectious Diseases Go Untreated

'Neglected' Infectious Diseases Go Untreated, Undiagnosed in Hundreds of Thousands of Low-Income Residents in the U.S., Analysis Finds - USA Today - http://www.kaisernetwork.org/fe.cfm?id=9267

Young Adults With Serious Mental Illness: Some States and Federal Agencies Are Taking Steps to Address Their Transition Challenges.

GAO-08-678, June 23 http://www.gao.gov/cgi-bin/getrpt?GAO-08-678 Highlights - http://www.gao.gov/highlights/d08678high.pdf

REFERENCE POINTS:
Family Caregiver Resources

Family Caregiver Alliance Releases NEW FAMILY CARE NAVIGATOR
Family Care Navigator is a tool developed for Family and Informal Caregivers as well as Professional Caregivers. This new tool provides state specific resources and suggestions for a variety of issues pertinent to challenges of caregiving.
http://caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083

More Training Needed for Family Caregivers
A recent Institute of Medicine report said family members are not properly trained to provide increasing levels of medical care for patients who are sent home from the hospital or rehab in worse physical condition than ever before, creating a big gap in the U.S. health care system. Experts say the U.S. needs a system to offer and pay for caregiver training, which some groups are beginning to offer. Reported in USA Today; to read the article, go to  http://www.usatoday.com/news/health/painter/2008-05-18-your-health_N.htm

REFERENCE POINTS:
New Resource Available On Academic and Career Readiness

The National Collaborative on Workforce & Disability for Youth has released "Preparing All Youth for Academic & Career Readiness: Implications for High School Policy and Practice". The paper identifies the challenges in practice and policy for successful post-school outcomes and it offers recommendations on how states, local school districts and individual high schools can prepare all youth, including youth with disabilities, with academic and career readiness skills. Based on two symposia and a year-long research effort, this paper identifies five broad policy and practice areas: (1) Instruction, Curriculum and Structure; (2) Assessment Practices; (3) Graduation Requirements; (4) Community and Family Connections; and (5) Data Quality Challenges. The paper suggests that by addressing these areas, a range of high school policy makers at the national, state, and local levels can improve their approaches for meeting the multiple and complex challenges of all their students. A copy of the paper can be found on NCWD/Youth's website at http://www.ncwd-youth.info/resources_&_Publications/background.php#academic_and_career_readiness.

REFERENCE POINTS: 
Conference and Workshop Updates Added to the TATRA 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.

This message is being sent by NCD upon request of the Centers for Medicare and Medicaid Services (CMS).for those interested in Medicare and durable medical equipment, prosthetics, orthotics and supplies:

You may have heard that Congress changed the way that Medicare determines 1) how much it pays for certain durable medical equipment, prosthetics, orthotics and supplies and 2) who can furnish these items. To accomplish this, CMS will be starting a pilot program designed to help save beneficiaries money; ensure that they can get quality medical equipment, supplies, and services; and help limit fraud and abuse in the Medicare program.  

The new Competitive Bidding Program lets Medicare use competitive bids submitted by suppliers to determine the amount Medicare pays for certain medical equipment and supplies. Under this program, beneficiaries who are permanent residents of or who visit a zip code that is a part of a Competitive Bidding Area (CBA) are required to obtain certain medical equipment and supplies from a contract supplier in order for Medicare to pay for these items. 

Starting July 1, 2008, beneficiaries will begin to see the effect of this new program in certain areas of the country.  Learn more about this new program by accessing the partner resources below.

You can find information about the new program by visiting www.medicare.gov or by calling 1-800-MEDICARE. http://www.cms.hhs.gov/center/partner.asp

Some Post Olmstead Anniversary Data. Information Bulletin #252 (6/08)

In "Happy Ninth Anniversary Olmstead,"(#251), we presented a macro comparison between FY 1999, the year the Supreme Court issued its Olmstead decision, and FY 2006, the last year for which we have, state by state, Medicaid data.  What follows breaks down the data.

1.  Per capita Medicaid nursing facility expenditures:

Between 1999 and 2006, the national per capita average increased in Medicaid nursing home expenditures from $130.41 (FY 1999) to $161.26 (FY 2006), an increase of $30.85. (To calculate the per capita expenditures, one divides the total population in your state into the total amount of Medicaid expenditures in your state allocated to nursing homes.  In simple language, in 2006 nationally each state spent (your taxes) an average of $161.26 for each person in the state's Medicaid institutional nursing facilities.)

Between 1999 and 2006, if your State really had intended to comply with the Olmstead decision, one would not expect to see an increase far above the national per capita average increase. Obviously, the higher a Medicaid per capita expenditure for nursing facilities, the greater the incentive the nursing facilities have to keep the beds occupied.

Here are the States that had the largest increases in nursing home per capita expenditures from 1999 to 2006. [The national average per capita increase was $30.85.]

NJ  $118.20, AK  $94.34, MS  $89.93, ND  $87.65, DE  $83.83, CN  $79.29, and AR, $75.39.

Here are the states with the lowest increases in nursing home per capita expenditures:

Three states reduced their per capita nursing home expenditures between 1999 and 2006:

    WA - $11.63, MN - $10.53, and NE - $1.30. 

Four states kept their per capita nursing home expenditure increases from 1999 to 2006 to a minimum and far below the national average increase of $30.85:

    TX $1.87, WI $2.10, MO $3.11, and OR $8.18.

2.  Per capita Medicaid community-based service expenditures:

If a state wanted to comply with the Olmstead decision and truly offer services "in the most integrated setting," one would expect to see substantial increases in per capita expenditures for community-based Medicaid services. In fact, between 1999 and 2006, the national per capita average increase in Medicaid community-based long term care expenditures increased from $28.82 (FY 1999) to $63.96 (FY 2006), an increase of $35.14 [compared to the nursing home per capita increase of $30.85].

Several obvious points: in FY 1999, the Medicaid nursing facility per capita average expenditure was $130.41 and increased to $161.26 in FY 2006, compared to the Medicaid community-based per capita average expenditure in FY 1999 of $28.82 to $63.96 (FY 2006).  There is still a tremendous institutional bias;  the institutional versus community-based expenditure differences are closing at a snail's pace!

The following six States had the largest per capita increases in Medicaid community-based service expenditures between FY 1999 and FY 2006:

    AK  $165.83, NM  $105.38, CA  $81.91, MN, $81.11, NY  $67.14, and ID  $60.58. 

The following ten States had the smallest per capita Medicaid increased expenditures in community-based long term services between FY 1999 and FY 2006:

One state actually spent less per capita in community-based services in FY 2006 than in FY 1999:  MS - $1.82.

Nine states increased their per capita Medicaid community-based service expenditures by less than $10 over the seven years:

    TN $1.16, UT $3.68, AL $5.74, IN $7.61, FL $7.49, ND $7.53, KY $8.16, MI $8.33, and AR $9.29.

As a great philosopher once said, "show me the money." Once elderly and disability advocates see how Medicaid funds have been expended in your State, it should not be too difficult to figure out whether or not your State officials are committed to offering community-based services as a real choice. It is time to analyze whether your State administrators are truly committed to implementing the Olmstead decision and the ADA, or whether they are merely giving you lip-service.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com

Study Seeks Participants with Sensory and/or Mobility Impairments

If you have a sensory impairment and/or mobility impairment, you may be eligible to participate in a new research project.  This research aims to understand what people with sensory and/or mobility impairments do in their daily lives, how their environments affect their community participation and what, if any, help they need to complete activities.

Eligibility requires that you:

• Are between the ages of 18 and 75
• Live in the community
• Have access to a computer
• Can read at or above the 6th grade level
• Can enter responses into a web-based survey or direct another individual to enter your responses into a web-based survey AND
• Have either a mobility impairment, a visual impairment, or a hearing impairment

If eligibility is established you will receive a code to log on to the survey site and complete the study.  All information will be kept confidential and no connection between you and your survey answers will be made. Participants will be reimbursed by either a personal check or by a gift certificate to either Target or Walgreens, and may choose the method of reimbursement they prefer.  The web-based assessment contains a set of two surveys and will take approximately one hour to complete.

Please click on the link below and you will be directed to a short pre-survey to determine eligibility.

Study Participation Eligibility and Registration Survey - http://emc.wustl.edu/Nscr/Nscrlogn.htm

This study is conducted by the Washington University Program in Occupational Therapy - http://ot.wustl.edu/ in collaboration with Paraquad, Inc. - http://www.paraquad.org/ This research is funded by the National Center for Medical Rehabilitation Research at the National Institutes of Health - http://www.ncmrr.org/ and the National Institute on Disability and Rehabilitation Research at the US Department of Education - http://www.ed.gov/about/offices/list/osers/nidrr/index.html.

Emerging Trends and People with Disabilities: Public Consultation

The National Council on Disability (NCD) is gathering public input for a study of emerging issues and trends affecting the lives of people with disabilities. Information gathered will be used in the development of NCD's next annual progress report to the President and Congress, "National Disability Policy: A Progress Report," which is required by Section 401(b) of the Rehabilitation Act of 1973, as amended.

The purpose of this public consultation is to gather input to inform NCD's assessment of the status of the nation in achieving policies that guarantee equal opportunity for all individuals with disabilities, and empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

We are seeking input on disability issues such as health, housing, employment, insurance, transportation, assistive technology, recreation, emergency preparedness, training, prevention, early intervention and education. Your input will be used in the development of recommendations including, but not limited to, recommendations for changes in legislation, regulations, policies, or programs, as appropriate. NCD seeks input from individuals with disabilities, organizations representing a broad range of individuals with disabilities, and agencies interested in or serving individuals with disabilities.

How can you participate in our public consultation process? We will briefly outline the purpose, key issues and key policy topics of interest. 

If you are interested in participating in this public consultation, you may want to respond or react to any of the policy topics of interest.  If you do want to react or respond, please follow these basic guidelines:

• Be brief: Use one short sentence to explain each point you want to make, as this will help us understand your issue or opinion.  You can add more detail afterwards if you wish.
• Focus on what is important to you: Write about the policy topic(s) you care most about first. If you want to make more detailed comments, put them in an appendix to your response or in a separate document.
• Provide evidence: Your comments will be more convincing if they are supported by evidence or information. If you are responding by regular mail or email, send in copies of supporting documents rather than information about where to find them.
• Submit your response as soon as possible: The earlier you send in your views, the longer we have to consider them. This is particularly important if you are providing new information or evidence.
• Tell us who you are: Say whether you are commenting as a private citizen, representing other people, or on behalf of an organization.
• Let us know if you want your response to be kept confidential: NCD may publish your views as part of the results of the consultation.  If you do not want us to do so, state this clearly in your response.
• If possible, please react or respond by email: You can even insert your comment(s) or reaction(s) into this document following the questions you wish to answer or the subjects you want to discuss from the list below.  If you are not able to respond by email, please share your written comments with us in a format that you choose, but please identify the “policy topic” you are addressing at the beginning of your response.

Now we want to hear from you. Please provide comments and specific examples about any or all of the following:

 1. Describe the most current and/or emerging issues facing people with disabilities.

• Identify what you believe are the personal challenges of living with a disability and individual barriers to full participation - e.g., finding and keeping a job, lack of accessible housing, transportation or access to the technologies that assist people with disabilities in independent living and access to the workplace.
• Address how opportunities for people with disabilities are affected by the attitudinal challenges that still exist among people who do not see the value of potential contributions of people with disabilities to society.

 2. Provide your assessment of how well existing government programs address the emerging issues and needs of people with disabilities.

• Address systemic challenges that exist in areas such as employment, education, housing, transportation, health care, etc.;
• Explain how the Federal government and its partners should distribute funding resources to better meet the future needs of people with disabilities, including describing programs and services that will be needed to address the short- and long-term needs of people with disabilities.

Your comments will help NCD provide a guide for America’s programs and services to be modernized to reflect the changed and changing needs of people with disabilities in our communities. Please send your information to NCD by July 22, 2008, in one of two ways:

Email to:ncd@ncd.gov - Type "Emerging Trends" in the subject line

Or by U.S. mail to: National Council on Disability, ATTN: Emerging Trends Committee, 1331 F Street NW, Suite 850, Washington, DC 20004

Potential subjects:

The Interagency Committee on Disability Research (ICDR) is seeking your input/comments about disability research issues. 

Please respond promptly if you are interested in participating in the ICDR stakeholder events.  The text of the flyer is copied below. For more information and registration, please visit the Web site at http://www.icdr.us/stakeholders.

SAVE THE DATES:

Tuesday, August 5, 2008 - 9:00 a.m. - 12:00 p.m. and 1:00 - 4:00 p.m. ET
Wednesday, August 13, 2008 - 9:00 a.m. - 12:00 p.m. and 1:00 - 4:00 p.m. ET

Doubletree Hotel Crystal City, 300 Army Navy Drive, Arlington, VA 22202

Notice of public meetings and Request for comments

The Interagency Committee on Disability Research (ICDR) encourages individuals with disabilities or organizations representing individuals with disabilities such as: 1) service providers, 2) disability and rehabilitation research and policy groups, and 3) advocacy organizations with specialized disability knowledge and experience, to suggest specific ways to improve future disability and rehabilitation research to benefit individuals with disabilities. We are also interested in hearing from individuals concerning how well the existing federal research programs are responding to the changing needs of individuals with disabilities. These comments can cover a wide range of research areas, including, but not limited to, the following:

• Employment of people with disabilities
• Community integration and continuum of care
• Health disparities
• Access to assistive technology and universal design
• Transition of youth to employment and independent living
• Availability of accessible housing, transportation and recreation

A panel of ICDR members will hear testimony during four separate meetings on the two days listed above at the Doubletree Hotel in Arlington, VA. For those who are unable to testify in person, testimony may be given by phone or in writing. (Written testimony will be read as time permits.) The meeting will also be Webcast and interested parties can observe the proceedings live via an IP Web site.  

If you are interested in giving testimony in person, by phone, or wish to submit only written testimony, please register to that effect on the ICDR Stakeholder Meeting Web site: http://www.icdr.us/stakeholders. Oral testimony will be limited and will be accommodated on a first-come, first-served basis. Please note that people who wish to observe the Webcast without actively participating should also register.

Additional information, including the format for written and oral testimony and deadlines for receiving comment can be found on the Web site. People must indicate, which date and session (morning or afternoon), they wish to partake in.  Participants on the west coast will be given preference for testimony by phone during the afternoon sessions. For further information, please contact Carol Blachly at cblachly@cessi.net or visit the Web site.

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.