Champions May Newsletter

What is new at Champions? This e-Newsletter! Once each week the Champions for Progress Center will be sending out this newsletter. Before you start thinking, "I don't want any more email!" Remember, this newsletter replaces and does not duplicate one of the main features of the CSHCN Leadership listserve: John Reiss' news items.

John Reiss of the Institute for Child Health Policy at the University of Florida is still collecting news items for you but now they will be coming to you in a different format--in this newsletter.

One More Change...

The CSHCN Leadership listserve is moving to Utah State University. What does that mean to you? Only one thing: You just need to send your questions and comments for the group to a different address. The new address for the listserve is:

Most importantly, your ability to post questions to the group is still available. That hasn't changed.

Also, you will continue to receive emails from the listserve at youremail@youremailaddress.com, the email address you used to subscribe to the original listserve.

We hope you enjoy the changes. If you have any questions or comments please contact Jon Nelson, the webmaster for the Champions for Progress Center by email at jon.nelson@usu.edu or by phone at (435) 797-7346.

"The Youthhood": Online Resources for the Transition from Youth to Adulthood

Between childhood and adulthood, there's Youthhood: "A place to plan for the future." The Youthhood website is for use by students, parents, teachers, and others who work with transition-aged youth-making the shift from high school to "whatever comes after high school" -whether it be college, technical school, community living, etc.-a little smoother for youth. (News item from the National Center on Secondary Education and Transition E-News: http://www.ncset.org/enews/current.asp)

Working Together to Develop Care Plan Protocols for CSHCN

North Carolina's CYSHCN program is interested in developing care plan protocols for children with special health care needs as a tool for supporting both families and health professionals in providing a quality medical home for children with disabilities and chronic conditions. If other states have also begun creating care plans, we would appreciate receiving information and/or talking with state leaders about their state's efforts around organizing and utilizing care plans for CYSHCN.

Chartbook on "Access to Health Care for California's Children with Special Health Care Needs"

"Access to Health Care for California's Children with Special Health Care Needs (CSHCN): Chartbook" provides new California data on access to care for CSHCN and compares the care children in Medi-Cal receive to the care received by other children in California and in other state Medicaid programs. This report is available at:

Redesign of the Assistant Secretary for Planning and Evaluation (ASPE) website

The Office of the Assistant Secretary for Planning and Evaluation (ASPE) is pleased to announce the redesign of its website, and that of the offices within ASPE. The most noticeable change is how users can find information. Searches are available by (1) topic, (2) program, (3) population, (4) ASPE office, (5) advanced search, and (6) full text search. Other enhancements are also available, and more will be added over the next few weeks. Please take a look at our redesign and send any suggestions or comments to Brenda Veazey, the Office of Disability, Aging and Long-Term Care Policy (DALTCP) Webmaster.

New ESRI Report: Sharing Options and Policies for Covering Uninsured Populations

Bolstered by planning grants awarded by the federal Health Resources and Services Administration, many states are examining options and crafting policies to cover their uninsured populations. To help grantee states share their findings and results with other state and federal policymakers, researchers at the Economic and Social Research Institute (ESRI) have compiled and synthesized state experiences in a new report released today on The Commonwealth Fund's Web site. The report is available for download; look on the right side of the web page under "downloads."

Insurance Outreach and Enrollment Tools for Eligible but not Enrolled

In addition to employment-based strategies, states are improving outreach and enrollment for people eligible for but not enrolled in existing programs; using federal waivers to extend Medicaid/CHIP coverage to parents and other adults; establishing health savings accounts; reinsuring private coverage; imposing a full employer mandate; and assessing single-payer and multipayer universal coverage models. For state, local, and regional innovations in health coverage, access, and quality, visit the Tools & Innovations section of the Fund's Web site.

The Cultural Competence Leadership Fellowship

The Health Research & Educational Trust (HRET) is accepting applications through April for a new cultural competence leadership fellowship, launched in collaboration with the Institute for Diversity in Health Management, Health Forum and National Center for Healthcare Leadership. The fellowship is dedicated to helping leaders enhance care to racial and ethnic minorities, and maximize cultural diversity within their organizations. HRET and Health Forum, in partnership with the Institute for Diversity in Health Management, the National Center for Healthcare Leadership and the American Hospital Association, are launching a new professional development program to help health care leaders to become more culturally competent. Apply today:

Screening Resource Centers: Tools and Technical Assistance for States

A regular feature of each mid-month newsletter is the National Center Spotlight. Once each month the newsletter will describe the national center(s) for a particular performance measure. The focus of this National Center Spotlight is the national centers associated with performance measure 3, Early and Continuous Screening: the National Newborn Screening Genetics Resource Center (NNSGRC) and National Center for Hearing Assessment and Management (NCHAM).

National Newborn Screening Genetics Resource Center (NNSGRC)

Found on the web at http://genes-r-us.uthscsa.edu/, and housed in Austin, Texas, the NNSGRC provides resource information for genetics and newborn screening. In a recent conversation, Dr. Therrell, director of the NNSGRC, was asked about the differences between genetics screening and newborn screening. He said:

National Newborn Screening and Genetics Resource Center (NNSGRC)

Director: Dr. Brad Therrell

1912 W. Anderson Lane, Suite 210
Austin, Texas 78757

Phone: (512) 454-6419
Fax: (512) 454-6509

"Newborn screening is a subset of genetics. Genetics screening in the broad sense is screening for any sort of genetic conditions or a propensity towards a genetic condition. Newborn screening is only looking at conditions that would be detected in newborns."

He also said that, "In the concept of genetics in public health, the successful program has been newborn screening. So when you talk to state health departments about genetics they will usually talk about newborn screening. We are now talking about bigger issues than newborn screening as an outcome of the genome project."

It is exciting to see how the newborn screening, the smaller program, is becoming more defined while at the same time the NNSGRC is working to expand the overarching genetics program information.

With respect to the importance of the NNSGRC to the audience of the Champions Newsletter, Dr. Therrell said, "Our program identifies conditions that would qualify for some of the services that are provided by CSHCN programs. So Title V directors need to be aware of the conditions included in their jurisdiction's newborn screening program and be aware of the possible outcomes from screening so that they can be more efficient and effective in service delivery. They should be linked to the follow-up portion of the newborn screening program so that automatic referrals can be considered as newborns are identified with qualifying conditions."

In the conversation with Dr. Therrell, he mentioned a variety of different resources that are available either on the website or by contacting the NNSCRC directly. Contact information can be found on their website.

Resources from the NNSGRC

National Center for Hearing Assessment and Management (NCHAM)

Found on the web at http://www.infanthearing.org/, and housed at Utah State University in Logan, UT, NCHAM provides resource information for infant and toddler hearing screening.

National Center for Hearing Assessment & Management (NCHAM)

Director: Dr. Karl White

Utah State University
2880 Old Main Hill
Logan, UT 84322

Phone: (435) 797-3584

When asked about the role of NCHAM, project coordinator Kathleen Watts said, "We are a technical assistance center so our role is to help anywhere within the system. Right now we work more at a state-level than a community-level in terms of helping [people] implement whatever they need in order to make this system work. I started with NCHAM 4½ years ago. Back then, a lot of the emphasis was on screening. That happens at the hospital or community level. Now we have done audiologist training so we have more audiologists who are prepared to do infant diagnosis."

She then added, "In terms of the system of care, we are like the advisors. The way we are set up, we have 12 audiologists at different places throughout the nation who have a region they are involved with. Those states will turn to that audiologist for assistance or they might call me. There are different avenues to get to us. There is also the state EDHI coordinator. They might call us and ask for assistance."

Additionally, NCHAM can help bring states in contact with other states that are dealing with similar issues. Kathleen and the staff at NCHAM do a great job of keeping an overall sense of the national picture. "That way we can know who can be a resource for someone else." NCHAM is also helpful in bringing EDHI coordinators together with the Title V CSHCN directors since the EDHI coordinators "play an important part in the overall system of care."

In the conversation with Kathleen Watts she also mentioned a variety of resources available through the NCHAM website or by contacting the staff directly. Contact information can be found on their website.

Resources from NCHAM

Champions would like to thank both Dr. Therrell of the NNSGRC and Kathleen Watts of NCHAM for their time and assistance in making this important information on screening available.

newsletter created for: youremail@youremailaddress.com	May 02, 2005


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Champions Update The latest on the Champions newsletter and listserve Current News and Events "The Youthhood": Online Resources for the Transition from Youth to Adulthood Working Together to Develop Care Plan Protocols for CSHCN Chartbook on "Access to Health Care for California's Children with Special Health Care Needs" Redesign of the Assistant Secretary for Planning and Evaluation (ASPE) website New ESRI Report: Sharing Options and Policies for Covering Uninsured Populations Insurance Outreach and Enrollment Tools for Eligible but not Enrolled The Cultural Competence Leadership Fellowship National Center Spotlight National Newborn Screening Genetics Resource Center (NNSGRC) National Center for Hearing Assessment and Management (NCHAM) Champions e-Newsletter What is new at Champions? This e-Newsletter! Once each week the Champions for Progress Center will be sending out this newsletter. Before you start thinking, "I don't want any more email!" Remember, this newsletter replaces and does not duplicate one of the main features of the CSHCN Leadership listserve: John Reiss' news items. John Reiss of the Institute for Child Health Policy at the University of Florida is still collecting news items for you but now they will be coming to you in a different format--in this newsletter. In each edition you will find one or more of the following sections: The Champions Update: In this section you will find information about the most recent activities of the Champions for Progress Center, including new additions and changes to the Champions website The National Center Spotlight: Once each month the newsletter will focus on one of the six performance measures and the national centers associated with that performance measure. This section will highlight the resources, tools, and services that are available to you. Current News and Events: Here is where you will find all the news items that John Reiss collects for the newsletter One More Change... The CSHCN Leadership listserve is moving to Utah State University. What does that mean to you? Only one thing: You just need to send your questions and comments for the group to a different address. The new address for the listserve is: cshcnleaders@lists.usu.edu Most importantly, your ability to post questions to the group is still available. That hasn't changed. Also, you will continue to receive emails from the listserve at youremail@youremailaddress.com, the email address you used to subscribe to the original listserve. We hope you enjoy the changes. If you have any questions or comments please contact Jon Nelson, the webmaster for the Champions for Progress Center by email at jon.nelson@usu.edu or by phone at (435) 797-7346. "The Youthhood": Online Resources for the Transition from Youth to Adulthood Between childhood and adulthood, there's Youthhood: "A place to plan for the future." The Youthhood website is for use by students, parents, teachers, and others who work with transition-aged youth-making the shift from high school to "whatever comes after high school" -whether it be college, technical school, community living, etc.-a little smoother for youth. (News item from the National Center on Secondary Education and Transition E-News: http://www.ncset.org/enews/current.asp) www.youthhood.org Working Together to Develop Care Plan Protocols for CSHCN North Carolina's CYSHCN program is interested in developing care plan protocols for children with special health care needs as a tool for supporting both families and health professionals in providing a quality medical home for children with disabilities and chronic conditions. If other states have also begun creating care plans, we would appreciate receiving information and/or talking with state leaders about their state's efforts around organizing and utilizing care plans for CYSHCN. Contact Marlyn.Wells@ncmail.net Chartbook on "Access to Health Care for California's Children with Special Health Care Needs" "Access to Health Care for California's Children with Special Health Care Needs (CSHCN): Chartbook" provides new California data on access to care for CSHCN and compares the care children in Medi-Cal receive to the care received by other children in California and in other state Medicaid programs. This report is available at: www.healthychild.ucla.edu/Publications.asp Redesign of the Assistant Secretary for Planning and Evaluation (ASPE) website The Office of the Assistant Secretary for Planning and Evaluation (ASPE) is pleased to announce the redesign of its website, and that of the offices within ASPE. The most noticeable change is how users can find information. Searches are available by (1) topic, (2) program, (3) population, (4) ASPE office, (5) advanced search, and (6) full text search. Other enhancements are also available, and more will be added over the next few weeks. Please take a look at our redesign and send any suggestions or comments to Brenda Veazey, the Office of Disability, Aging and Long-Term Care Policy (DALTCP) Webmaster. http://aspe.hhs.gov/_/index.cfm New ESRI Report: Sharing Options and Policies for Covering Uninsured Populations Bolstered by planning grants awarded by the federal Health Resources and Services Administration, many states are examining options and crafting policies to cover their uninsured populations. To help grantee states share their findings and results with other state and federal policymakers, researchers at the Economic and Social Research Institute (ESRI) have compiled and synthesized state experiences in a new report released today on The Commonwealth Fund's Web site. The report is available for download; look on the right side of the web page under "downloads." http://www.cmwf.org/tools/tools_show.htm?doc_id=273662 Insurance Outreach and Enrollment Tools for Eligible but not Enrolled In addition to employment-based strategies, states are improving outreach and enrollment for people eligible for but not enrolled in existing programs; using federal waivers to extend Medicaid/CHIP coverage to parents and other adults; establishing health savings accounts; reinsuring private coverage; imposing a full employer mandate; and assessing single-payer and multipayer universal coverage models. For state, local, and regional innovations in health coverage, access, and quality, visit the Tools & Innovations section of the Fund's Web site. http://www.cmwf.org/tools/tools_list.htm?attrib_id=9502 The Cultural Competence Leadership Fellowship The Health Research & Educational Trust (HRET) is accepting applications through April for a new cultural competence leadership fellowship, launched in collaboration with the Institute for Diversity in Health Management, Health Forum and National Center for Healthcare Leadership. The fellowship is dedicated to helping leaders enhance care to racial and ethnic minorities, and maximize cultural diversity within their organizations. HRET and Health Forum, in partnership with the Institute for Diversity in Health Management, the National Center for Healthcare Leadership and the American Hospital Association, are launching a new professional development program to help health care leaders to become more culturally competent. Apply today: http://www.healthforumfellowships.com/healthforumfellowships/content/ccapp.pdf Or, download the brochure: http://www.healthforumfellowships.com/healthforumfellowships/content/ccfellow.pdf Screening Resource Centers: Tools and Technical Assistance for States A regular feature of each mid-month newsletter is the National Center Spotlight. Once each month the newsletter will describe the national center(s) for a particular performance measure. The focus of this National Center Spotlight is the national centers associated with performance measure 3, Early and Continuous Screening: the National Newborn Screening Genetics Resource Center (NNSGRC) and National Center for Hearing Assessment and Management (NCHAM). National Newborn Screening Genetics Resource Center (NNSGRC) Found on the web at http://genes-r-us.uthscsa.edu/, and housed in Austin, Texas, the NNSGRC provides resource information for genetics and newborn screening. In a recent conversation, Dr. Therrell, director of the NNSGRC, was asked about the differences between genetics screening and newborn screening. He said: National Newborn Screening and Genetics Resource Center (NNSGRC) Director: Dr. Brad Therrell 1912 W. Anderson Lane, Suite 210 Austin, Texas 78757 Phone: (512) 454-6419 Fax: (512) 454-6509 "Newborn screening is a subset of genetics. Genetics screening in the broad sense is screening for any sort of genetic conditions or a propensity towards a genetic condition. Newborn screening is only looking at conditions that would be detected in newborns." He also said that, "In the concept of genetics in public health, the successful program has been newborn screening. So when you talk to state health departments about genetics they will usually talk about newborn screening. We are now talking about bigger issues than newborn screening as an outcome of the genome project." It is exciting to see how the newborn screening, the smaller program, is becoming more defined while at the same time the NNSGRC is working to expand the overarching genetics program information. With respect to the importance of the NNSGRC to the audience of the Champions Newsletter, Dr. Therrell said, "Our program identifies conditions that would qualify for some of the services that are provided by CSHCN programs. So Title V directors need to be aware of the conditions included in their jurisdiction's newborn screening program and be aware of the possible outcomes from screening so that they can be more efficient and effective in service delivery. They should be linked to the follow-up portion of the newborn screening program so that automatic referrals can be considered as newborns are identified with qualifying conditions." In the conversation with Dr. Therrell, he mentioned a variety of different resources that are available either on the website or by contacting the NNSCRC directly. Contact information can be found on their website. Resources from the NNSGRC Technical Consultations: Consultations are available for state health departments in both genetics and newborn screening. Applications for consultation can be obtained by contacting NNSGRC directly. Genetics Education Materials Database: This database is a searchable database that contains materials developed over time by federal grants and other materials that may not be readily available in other places. http://www.gemdatabase.org/GEMDatabase/index.asp International Listserve for Discussions about Screening: If you would like to join the NNSGRC discussion listserve on newborn screening, or just find out more about it, send an email to Brad Therrell, Ph.D. at therrell@uthscsa.edu. International Listserve for Discussions about Genetics Issues: This listserve is in the works and should be available in the next few months. Be sure to check the NNSGRC website for when this will be available. Newborn Screening Activities: The NNSGRC website has an interactive map listing basic newborn screening program information, by state, that includes contact information within the program and a link to the program's website. http://genes-r-us.uthscsa.edu/resources/consumer/statemap.htm Genetics Screening Activities: The NNSGRC website has a listing of screening activities. There is information available; however, since this is a recent addition to the website it is growing daily. http://genes-r-us.uthscsa.edu/resources/genetics/state.htm Newborn Screening Disorders: On the website is a comprehensive listing of all the conditions that are included in state required newborn screening programs. http://genes-r-us.uthscsa.edu/nbsdisorders.pdf National Newborn Screening Information System: Newly online as of January 1st, the NNSIS is designed so that as cases are detected in real-time by state newborn screening programs they can be entered into the system. Various summation reports are available to the general public from these data. This system relies on timely input of data and not all programs are complying, so any assistance that can be given in terms of encouragement for its use would be appreciated. Individual case entries take less than 30 seconds. National Center for Hearing Assessment and Management (NCHAM) Found on the web at http://www.infanthearing.org/, and housed at Utah State University in Logan, UT, NCHAM provides resource information for infant and toddler hearing screening. National Center for Hearing Assessment & Management (NCHAM) Director: Dr. Karl White Utah State University 2880 Old Main Hill Logan, UT 84322 Phone: (435) 797-3584 When asked about the role of NCHAM, project coordinator Kathleen Watts said, "We are a technical assistance center so our role is to help anywhere within the system. Right now we work more at a state-level than a community-level in terms of helping [people] implement whatever they need in order to make this system work. I started with NCHAM 4½ years ago. Back then, a lot of the emphasis was on screening. That happens at the hospital or community level. Now we have done audiologist training so we have more audiologists who are prepared to do infant diagnosis." She then added, "In terms of the system of care, we are like the advisors. The way we are set up, we have 12 audiologists at different places throughout the nation who have a region they are involved with. Those states will turn to that audiologist for assistance or they might call me. There are different avenues to get to us. There is also the state EDHI coordinator. They might call us and ask for assistance." Additionally, NCHAM can help bring states in contact with other states that are dealing with similar issues. Kathleen and the staff at NCHAM do a great job of keeping an overall sense of the national picture. "That way we can know who can be a resource for someone else." NCHAM is also helpful in bringing EDHI coordinators together with the Title V CSHCN directors since the EDHI coordinators "play an important part in the overall system of care." In the conversation with Kathleen Watts she also mentioned a variety of resources available through the NCHAM website or by contacting the staff directly. Contact information can be found on their website. Resources from NCHAM Audiologist Workshops: These workshops are, of course, for audiologists but directors can inform audiologists in their state about the workshops. http://www.infanthearing.org/workshop/index.html Bulletin Boards: Audiologists check the bulletin boards regularly. As people have questions, they can post it and someone will get back to them with an answer. If we don't have an answer we will find one for them. http://www.infanthearing.org/ubb/index.html State Legislation: If people want to know how different states are doing things there is the section for states' legislation. http://www.infanthearing.org/legislative/index.html#ENACTED States' Profiles: Information is available for each state about (1) Newborn Hearing Screening, (2) Diagnostic Audiology & Pediatric Rehabilitation Services, (3) Early Intervention, (4) Data Management, (5) Medical Home, (6) Program Evaluation Tools, and (7) Family Support & Resources Information. This gives a fairly accurate picture of what happens in each state. http://www.infanthearing.org/states/index.html Champions would like to thank both Dr. Therrell of the NNSGRC and Kathleen Watts of NCHAM for their time and assistance in making this important information on screening available.

newsletter created for: youremail@youremailaddress.com	May 02, 2005

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The Champions for Progress Newsletter if funded as part of the Leadership Development for Implementation of Systems of Care for Children and Youth with Special Health Care Needs Cooperative Agreement (#U42MC00241), funded by the Maternal and Child Health Bureau, Health Resources and Services Administration (DHHS) to the Early Intervention Research Institute at Utah State University. The Champions for Progress Center would like to thank John Reiss of the Institute for Child Health Policy at the University of Florida for his work collecting newsitems for this Newsletter.

Champions Update

Current News and Events

National Center Spotlight

Champions e-Newsletter