Champions Newsletter

The Minnesota Department of Health, Children with Special Health Needs (MCSHN) program created a curriculum specially designed to assist elementary school teachers educate children about asthma. The materials include a manual, a variety of related educational tools, and training opportunities.

Pennsylvania Medicaid Access-To-Dental Care Lawsuit

The Pittsburgh Post-Gazette reports that lawyers recently submitted final written arguments in a class-action lawsuit against Pennsylvania in which advocates for Medicaid beneficiaries with disabilities allege that access to dental care is inadequate. Similar lawsuits have been filed in more than 20 states.

In the Pennsylvania lawsuit, filed in 2000, attorney Edmond Tiryak and lawyers for the Disabilities Law Project (http://www.dlp-pa.org/) claim that Medicaid-funded dental payments are "grossly inadequate" to ensure access to care for adults and children with disabilities. The suit argues that the state Department of Public Welfare must increase payment rates to dentists to improve access to care.

A Workbook for Youth with Disabilities on Disability Disclosure

The National Collaborative on Workforce and Disability for Youth (NCWD/Youth) http://ncwd-youth.info/ has recently published a workbook for youth with disabilities that helps them develop the knowledge and skills needed to make informed decisions about disclosing their disability--decisions that can affect their educational, employment, and social lives.

The workbook is entitled, "411 on Disability Disclosure: A Workbook for Youth with Disabilities" and is available online in PDF format at:

New Children's Medical Services (CMS) Transition Resources

Below is a link to new transition materials that CMS has just released. This and other materials were developed under contract with the Institute for Child Health Policy at the University of Florida by John Reiss, Robert Gibson, Randy Miller, and Narayan Raum.

"Envisioning Your Future: A Young Person's Guide to Health Care Transition" is a guide to help youth and young adults with special health care needs, and their families, think about how to plan for a successful health care transition.

As per the statement included in this document, you may reproduce it for educational or personal (non-commercial) uses and full credit should be given to the authors. So please use and distribute.

There are other transition materials available from the CMS website including materials in Spanish.

Free Quick Reference and Nutrition Curricula Now Available

The Pacific West MCH Distance Learning Network has developed three curricula for health professionals to strengthen nutrition services for children with special health care needs and their families as a result of a MCHB-funded distance learning grant to the USC UCEDD in collaboration with the UW CHDD.

These curricula are suitable for LEAH, PPC and LEND interdisciplinary training as well as training specific to nutritionists, public health and other individual disciplines and are available online at:

Resources to assist professionals working to improve oral health services for CSHCN

The National Maternal and Child Oral Health Resource Center (OHRC) has produced three new resources -- a fact sheet, a tip sheet, and a resource guide -- to assist professionals working to improve oral health services for children and adolescents with special health care needs.

The fact sheet, Oral Health for Children and Adolescents with Special Health Care Needs: Challenges and Opportunities, presents information on unmet oral health care needs, oral health and general health and well-being, barriers to care (e.g., lack of insurance or qualified oral health professionals), and how Medicaid and other publicly financed reimbursement methods offer opportunities for care.

The tip sheet, Strategies for Improving the Oral Health System of Care for Children and Adolescents with Special Health Care Needs, outlines approaches for health professionals who are planning, developing, and implementing state and local efforts to ensure access to care.

The Oral Health Services for Children and Adolescents with Special Health Care Needs: Resource Guide provides a list of journal articles, materials, and federal agencies and national organizations that may serve as resources for ensuring optimal care.

National Technical Assistance Center for Children's Mental Health has Moved

The new contact information for the National Technical Assistance Center for all letters and regular mail is:

National Technical Assistance Center For Children's Mental Health
Georgetown University
Box 571485
Washington, DC 20057

Family Voices: The National Center on Family and Professional Partnerships for CYSHCN

After more than 10 years as a national organization, Family Voices has recently received funding making it a national center, The National Center on Family and Professional Partnerships for Children and Youth with Special Health Care Needs. As the name implies, the national center has even more of an emphasis on national family and professional partnerships.

The National Center on Family and Professional Partnerships for CYSHCN

Executive Director: Jennifer M. Cernoch, Ph.D.

2340 Alamo SE, Suite 102
Albuquerque, NM 87106

ph: (505) 872-4774
toll free: (888) 835-5669
fax: (505) 872-4780
email: kidshealth@familyvoices.org
website: http://www.familyvoices.org

In a recent conversation with Jennifer Cernoch, PhD, the center's Executive Director, and Nora Wells, the center's Data Project Director, it was pointed out that two of the main emphases for the center are expanding and implementing a network of family-to-family health information centers and promoting the knowledge of and opportunities for the development of family and professional partnerships at the federal, state, and local levels.

Family-to-Family Health Information Centers (F2F HIC)

Family-to-Family Health Information Centers are state-level organizations run by families to provide health information and support for families of CYSHCN in the state and to promote partnerships using families and professionals in the state. The Health Information Centers are the state-level mechanisms for reaching families and providing support, information, and education.

In the past these have been volunteer organizations. There are now funding sources that different family groups can apply for. According to Nora Wells, Family Voices "is providing the technical assistance on the national level to help groups get this funding and to help family groups work together. We help them get connected through a variety of mechanisms. We are the technical assistance arm for those F2F HICs at this point."

More information about family-to-family health information centers is available online at:

Family and Professional Partnerships

At Family Voices it is recognized that partnerships are critical to success-not just give-and-take relationships but real partnerships.

Family Voices provides training and opportunities for emerging family leaders to become partners with others at various levels within the system. They also provide the mechanism for information sharing among family leaders all over the country. A family leader who is part of an initiative in their state can talk about their experiences, receive support, and then share information and resources that then informs another parent leader in another state.

One particular item available for professionals to begin the process of developing partnerships with families is the Title V Toolbox for Family Participation.

The Toolbox is a collection of materials from state Title V agencies from around the country and how they have involved family members. You can find more information about the Toolbox online at:

Data Collection

Family Voices also helps establish the evidence base of their partnerships and other aspects of the community-based systems of care. They do that through a data-collection system developed within their networks.

Family Voices helps their family-to-family and volunteer family leaders collect and use information within their state. The focus is particularly on issues around health care financing and how they reflect the important issues within the state. Family Voices helps family leaders document their activities in partnership with professionals. Those might be meetings, conferences, committee memberships, or material review activities. This information is also aggregated nationally so that information can be provided to partners with a picture of what family groups are doing and how they can inform the activities that professional groups do.

Family Voices also helps family leaders use data they collect in a variety of ways. They help them produce state-level data reports and use those reports to document the kinds of issues that families are identifying and the kinds of ways that parents and professionals are working together to resolve some of those issues.

Their data collection efforts are aimed at trying to collect consistent information that can help inform the system. By informing the system they can help improve the system. They can identify things that can be done to help parents and professionals work together.

Available on the Web

There are two other sets of resources available on the Family Voices web. The first is part of the Bright Futures project the other is part of the Managed Care project.

"Bright Futures is a vision and a philosophy of children's health care. It is also a set of up-to-date guidelines, offering a practical approach to heath care for all children from birth through adolescence."

In October of 1995, Family Voices began a one-year project, funded through the Annie E. Casey Foundation that included surveying members of families with children with special health needs in four selected cities: Atlanta, Denver, Des Moines, and Seattle about their experiences with their health plan. The Managed Care survey and the survey results can be found at:

One of the products from the project is the Managed Care brochure developed by Nora Wells. The brochure is written for families of children with special health care needs to help them learn about managed care. It is free and can be ordered from the Family Voices website catalog:

If you need help establishing family partnerships or improving partnerships in your state, give the National Center on Family and Professional Partnerships for Children and Youth with Special Health Care Needs a call. They have the resources to help you get started!

newsletter created for: youremail@youremailaddress.com	Tuesday, July 19th, 2005


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Asthma Education: An Integrated Approach--Ideas for Elementary Classrooms The Minnesota Department of Health, Children with Special Health Needs (MCSHN) program created a curriculum specially designed to assist elementary school teachers educate children about asthma. The materials include a manual, a variety of related educational tools, and training opportunities. The materials are available online at: http://www.health.state.mn.us/divs/hpcd/cdee/asthma/School.html Pennsylvania Medicaid Access-To-Dental Care Lawsuit The Pittsburgh Post-Gazette reports that lawyers recently submitted final written arguments in a class-action lawsuit against Pennsylvania in which advocates for Medicaid beneficiaries with disabilities allege that access to dental care is inadequate. Similar lawsuits have been filed in more than 20 states. In the Pennsylvania lawsuit, filed in 2000, attorney Edmond Tiryak and lawyers for the Disabilities Law Project (http://www.dlp-pa.org/) claim that Medicaid-funded dental payments are "grossly inadequate" to ensure access to care for adults and children with disabilities. The suit argues that the state Department of Public Welfare must increase payment rates to dentists to improve access to care. Access this story and related links online: http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=31217 A Workbook for Youth with Disabilities on Disability Disclosure The National Collaborative on Workforce and Disability for Youth (NCWD/Youth) http://ncwd-youth.info/ has recently published a workbook for youth with disabilities that helps them develop the knowledge and skills needed to make informed decisions about disclosing their disability--decisions that can affect their educational, employment, and social lives. The workbook is entitled, "411 on Disability Disclosure: A Workbook for Youth with Disabilities" and is available online in PDF format at: http://ncwd-youth.info/assets/guides/411/411_Disability_Disclosure_complete.pdf New Children's Medical Services (CMS) Transition Resources Below is a link to new transition materials that CMS has just released. This and other materials were developed under contract with the Institute for Child Health Policy at the University of Florida by John Reiss, Robert Gibson, Randy Miller, and Narayan Raum. "Envisioning Your Future: A Young Person's Guide to Health Care Transition" is a guide to help youth and young adults with special health care needs, and their families, think about how to plan for a successful health care transition. As per the statement included in this document, you may reproduce it for educational or personal (non-commercial) uses and full credit should be given to the authors. So please use and distribute. There are other transition materials available from the CMS website including materials in Spanish. The CMS website can be found at: http://www.cms-kids.com/CMSNTransition.htm The "Young Person's Guide to Health Care Transition" can be found at: http://www.championsforprogress.org/resources/pm6/cms_transition_booklet.pdf Free Quick Reference and Nutrition Curricula Now Available The Pacific West MCH Distance Learning Network has developed three curricula for health professionals to strengthen nutrition services for children with special health care needs and their families as a result of a MCHB-funded distance learning grant to the USC UCEDD in collaboration with the UW CHDD. Nutrition For CSHCN - Self Study Curriculum (six modules, one CEU each) - Information on functional nutrition assessment and interventions for children with special health care needs - interactive online curriculum. Nutrition For CSHCN - Group Study Curriculum (four modules, one CEU each) - Integrates knowledge of clinical nutrition and systems of care to improve service delivery-designed to be delivered to small groups by a facilitator experienced in providing nutrition services. Nutrition and Oral Health - Self-Study Curriculum (five modules, one CEU each) - Proper nutrition plays a major role in oral health. This program provides information on preventing oral health problems and providing anticipatory guidance that can be delivered by many health care providers - designed to be used as a quick reference as well as the interactive online learning modules. These curricula are suitable for LEAH, PPC and LEND interdisciplinary training as well as training specific to nutritionists, public health and other individual disciplines and are available online at: http://www.pacificwestmch.org Resources to assist professionals working to improve oral health services for CSHCN The National Maternal and Child Oral Health Resource Center (OHRC) has produced three new resources -- a fact sheet, a tip sheet, and a resource guide -- to assist professionals working to improve oral health services for children and adolescents with special health care needs. The fact sheet, Oral Health for Children and Adolescents with Special Health Care Needs: Challenges and Opportunities, presents information on unmet oral health care needs, oral health and general health and well-being, barriers to care (e.g., lack of insurance or qualified oral health professionals), and how Medicaid and other publicly financed reimbursement methods offer opportunities for care. The fact sheet is available at: http://www.mchoralhealth.org/PDFs/SHCNfactsheet.pdf The tip sheet, Strategies for Improving the Oral Health System of Care for Children and Adolescents with Special Health Care Needs, outlines approaches for health professionals who are planning, developing, and implementing state and local efforts to ensure access to care. The tip sheet is available at: http://www.mchoralhealth.org/PDFs/SHCNtipsheet.pdf The Oral Health Services for Children and Adolescents with Special Health Care Needs: Resource Guide provides a list of journal articles, materials, and federal agencies and national organizations that may serve as resources for ensuring optimal care. The resource guide is available at: http://www.mchoralhealth.org/PDFs/SHCNResGuide.pdf National Technical Assistance Center for Children's Mental Health has Moved The new contact information for the National Technical Assistance Center for all letters and regular mail is: National Technical Assistance Center For Children's Mental Health Georgetown University Box 571485 Washington, DC 20057 Phone: 202 687-5000 Fax: 202 687-1954 e-mail: childrensmh@georgetown.edu http://gucchd.georgetown.edu/programs/ta_center Family Voices: The National Center on Family and Professional Partnerships for CYSHCN After more than 10 years as a national organization, Family Voices has recently received funding making it a national center, The National Center on Family and Professional Partnerships for Children and Youth with Special Health Care Needs. As the name implies, the national center has even more of an emphasis on national family and professional partnerships. The National Center on Family and Professional Partnerships for CYSHCN Executive Director: Jennifer M. Cernoch, Ph.D. 2340 Alamo SE, Suite 102 Albuquerque, NM 87106 ph: (505) 872-4774 toll free: (888) 835-5669 fax: (505) 872-4780 email: kidshealth@familyvoices.org website: http://www.familyvoices.org In a recent conversation with Jennifer Cernoch, PhD, the center's Executive Director, and Nora Wells, the center's Data Project Director, it was pointed out that two of the main emphases for the center are expanding and implementing a network of family-to-family health information centers and promoting the knowledge of and opportunities for the development of family and professional partnerships at the federal, state, and local levels. Family-to-Family Health Information Centers (F2F HIC) Family-to-Family Health Information Centers are state-level organizations run by families to provide health information and support for families of CYSHCN in the state and to promote partnerships using families and professionals in the state. The Health Information Centers are the state-level mechanisms for reaching families and providing support, information, and education. In the past these have been volunteer organizations. There are now funding sources that different family groups can apply for. According to Nora Wells, Family Voices "is providing the technical assistance on the national level to help groups get this funding and to help family groups work together. We help them get connected through a variety of mechanisms. We are the technical assistance arm for those F2F HICs at this point." More information about family-to-family health information centers is available online at: http://www.familyvoices.org/F2F.htm Family and Professional Partnerships At Family Voices it is recognized that partnerships are critical to success-not just give-and-take relationships but real partnerships. Family Voices provides training and opportunities for emerging family leaders to become partners with others at various levels within the system. They also provide the mechanism for information sharing among family leaders all over the country. A family leader who is part of an initiative in their state can talk about their experiences, receive support, and then share information and resources that then informs another parent leader in another state. One particular item available for professionals to begin the process of developing partnerships with families is the Title V Toolbox for Family Participation. The Toolbox is a collection of materials from state Title V agencies from around the country and how they have involved family members. You can find more information about the Toolbox online at: http://www.familyvoices.org/toolbox/ Data Collection Family Voices also helps establish the evidence base of their partnerships and other aspects of the community-based systems of care. They do that through a data-collection system developed within their networks. Family Voices helps their family-to-family and volunteer family leaders collect and use information within their state. The focus is particularly on issues around health care financing and how they reflect the important issues within the state. Family Voices helps family leaders document their activities in partnership with professionals. Those might be meetings, conferences, committee memberships, or material review activities. This information is also aggregated nationally so that information can be provided to partners with a picture of what family groups are doing and how they can inform the activities that professional groups do. Family Voices also helps family leaders use data they collect in a variety of ways. They help them produce state-level data reports and use those reports to document the kinds of issues that families are identifying and the kinds of ways that parents and professionals are working together to resolve some of those issues. Their data collection efforts are aimed at trying to collect consistent information that can help inform the system. By informing the system they can help improve the system. They can identify things that can be done to help parents and professionals work together. Available on the Web There are two other sets of resources available on the Family Voices web. The first is part of the Bright Futures project the other is part of the Managed Care project. "Bright Futures is a vision and a philosophy of children's health care. It is also a set of up-to-date guidelines, offering a practical approach to heath care for all children from birth through adolescence." http://www.familyvoices.org/BrightFutures/home.htm On the website you will find: Family Pocket Guide: Raising Healthy Infants, Children and Adolescents -- In the guide you will find information about how to choose and work with a health care provider, how your child grows from birth to age 21, what will happen at each health care visit, what to expect when your child gets older, and family resources and web links Health Care Visit Checklist -- This checklist helps families prepare for health visits so that they can develop a good relationship with their child's health care provider. Family Talkcards -- The intent of the Talkcards is to encourage families to share parenting ideas and strategies so others will have a range of options to think about when making their own decisions. Bright Futures Newsletters -- A free electronic newsletter, a digest of articles and news clips to share with families, family organizations, and our professional partners to offer a flavor of activities going on in the maternal and child health community. In October of 1995, Family Voices began a one-year project, funded through the Annie E. Casey Foundation that included surveying members of families with children with special health needs in four selected cities: Atlanta, Denver, Des Moines, and Seattle about their experiences with their health plan. The Managed Care survey and the survey results can be found at: http://www.familyvoices.org/anniecasey/home.htm One of the products from the project is the Managed Care brochure developed by Nora Wells. The brochure is written for families of children with special health care needs to help them learn about managed care. It is free and can be ordered from the Family Voices website catalog: http://www.familyvoices.org/catalog.htm If you need help establishing family partnerships or improving partnerships in your state, give the National Center on Family and Professional Partnerships for Children and Youth with Special Health Care Needs a call. They have the resources to help you get started!

newsletter created for: youremail@youremailaddress.com	Tuesday, July 19th, 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.

Asthma Education: An Integrated Approach--Ideas for Elementary Classrooms