Parent Involvement

ChampionsInC encourages expanding parent participation efforts because it is critical in organizing systems of care for children to make sure they and their families have access to the care they need. ChampionsInC is enthusiastic about parent participation and is always eager to share examples of parent involvement throughout communities.

The Opening Doors to Rural Communities project produced an internet conference entitled, What’s a Community to Do? Helping Families Help their Children with Special Needs. The conference was created to demonstrate accomplishments throughout different communities in Idaho, Maine, and Missouri. One particularly touching segment focused on a parent’s perspective of systems of care for children with special health care needs. This short presentation demonstrates the importance of having the unique contribution of parents who partner in decision-making at all levels.

View the presentation on the ChampionsInC website.

Strengthening the Medical Home through Parent Consultants

Providing accessible medical care for CYSHCN is a challenge in many communities. Physicians typically have limited time to talk to patients about care beyond their basic physical health and have limited staff to connect patients with other community-based services they need. Doctors also struggle to keep up with the financial demands of treating children with special needs. At the same time, many parents of CYSHCN have difficulty finding the services their children need within the confusing web of health care options. Enter the “parent consultants”.

Read more below...

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The Substance Abuse and Mental Health Services Administration (SAMHSA) has a unique mission: to establish a life in the community for everyone. The "Systems of Care" section of the SAMHSA website takes this goal to a new level by working in partnership with families and youth, along with public and private organizations, to coordinate mental health services and supports that build on the strengths of individuals and address cultural and linguistic needs. The organizers of Systems of Care realize that this is an all-encompassing effort that must involve the families, schools, and communities to be effective. Their website offers a variety of information to those interested in implementing a system of care in their community.

Learn more from the Systems of Care website .

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The interactive Online Chartbook from the Catalyst Center has two purposes: to increase understanding of the health care financing system, and to be a source of inspiration for communities. The Chartbook allows you to access your state page, easily compare your state data with other states, and search for innovative practices. The understanding of how care is, and is not, paid for is crucial to system improvement; therefore, you are encouraged to learn how states use particular financing strategies and “get inspired” by what other states are doing!

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Americans can make a big difference by forming partnerships to implement programs to help youth. The Community Guide to Helping America’s Youth , assembled by the U.S. Department of Health and Human Services with nine other federal agencies, helps caring adults build effective partnerships not only with youth, but also with schools and communities. This website offers planning tools and information resources to help you get started.

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In today’s world, consumer input is essential in improving high-quality health care. They have taken on influential leadership roles that have changed the relationship between health professionals and the people they serve. The “Rules for the Road” handbook is a handy “road map” for negotiating the twists and turns of the health care world. Consumers who are new to key leadership roles in human service organizations will find this resource indispensible.

View the handbook on the March of Dimes website.

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LeCroy & Milligan Associates dedicates itself to evaluating programs and providing training with the goal of offering useful evaluation information to help organizations become more responsive and effective in delivering services. Each issue of the LeCroy & Milligan newsletter, “Building Bridges: Linking Practice and Research on Home Visitation” contains useful information for families. The Winter 2008 edition features an article on Encouraging Family Participation (PDF).

Visit Lecroy & Milligan Associates’ website to learn more about the company and its resources.

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More than 25 years ago, Don Meyer recognized that the siblings of children with special needs share many of the concerns their parents do, but they don't always have the same support networks. As a result, Meyer created Sibshops—a lively peer support program for school-aged brothers and sisters of children with special needs. Years later, Meyer and his Sibling Support Project have developed a pretty good idea of what these siblings want: people to understand their experience.

Take a look at these 20 key points in the Brookes Publishing Newsletter , and don't miss your free download of two sample activities from Meyer's newly revised Sibshops workbook.

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A very special issue of the Collaborative Solutions Newsletter from Tom Wolff & Associates addresses the link between spirituality and social change. The newsletter lists six serious limitations in our communities and follows with a look at the spiritual principles that can guide us to make healthy communities for everyone. He specifically addresses the question, “How can our spirituality inform our work at social change and how can our work at social change inform our spirituality?”

Responses and feedback are especially appreciated on this topic and can be emailed to tom@tomwolff.com.

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The American Academy of Pediatrics Task Force on Mental Health, Bright Futures, the Council on Community Pediatrics, the Committee on Psychosocial Aspects of Child and Family Health, and the Committee on Practice and Ambulatory Medicine are pleased to announce The 15 Minute Mental Health Visit, a Web-based teleconference for pediatricians interested in learning more about how to address mental health concerns in practice.

The teleconference will take place on Thursday, June 5, 2008, from 8:00 pm - 9:00 pm EDT. The cost is free for participants. Click here to register .

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Ensuring near-universal health coverage could be closer than ever with the release of a new plan, outlined in an article in Health Affairs and a Commonwealth Fund issue brief . This proposal could potentially insure 44 million of the estimated 48 million uninsured Americans in 2008, offer new insurance choices to individuals and small businesses for nearly one-third less than what employers currently pay, and save $1.6 trillion over 10 years

"This approach builds on group insurance coverage and the national reach of Medicare and at the same time addresses the high administrative and premium costs for individuals and small groups," says Karen Davis, president of The Commonwealth Fund and co-author of the proposal. "It also demonstrates that it is possible to buy more for our health care dollars, cover all Americans with high quality insurance, and institute real reforms to stem rising health care costs."

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Project LAUNCH , funded by the Substance Abuse and Mental Health Services Administrations (SAMHSA), is a new grant program that promotes physical, emotional, social, and behavioral health of young children. The program is accepting applications from organizations that help children grow and thrive in supportive environments. Six grants will be awarded annually; the deadline to submit your application is June 12, 2008. Instructions for applying can also be found on the project page.

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Strengthening the Medical Home through Parent Consultants

Providing accessible medical care for CYSHCN is a challenge in many communities. Physicians typically have limited time to talk to patients about care beyond their basic physical health and have limited staff to connect patients with other community-based services they need. Doctors also struggle to keep up with the financial demands of treating children with special needs. At the same time, many parents of CYSHCN have difficulty finding the services their children need within the confusing web of health care options. Enter the “parent consultants”.

The primary goal of the Rhode Island Pediatric Practice Enhancement Project (PPEP) is to make the medical home more accessible to CYSHCN and their families. Parent consultants provide understanding and help to strengthen confidence for families because they themselves are parents of CYSHCN. Although parent consultants were an integral part of the Division of Family Health at the RI Department of Health for 20 years, the PPEP model puts policy into practice by moving the role of the parent consultant from the state office into the “real world” of health care and community-based service delivery.

PPEP is a collaboration among the Rhode Island Department of Health, the RI Department of Human Services (state Medicaid Agency), American Academy of Pediatrics, Neighborhood Health Plan of RI, and Family Voices at the Rhode Island Parent Information Network (RIPIN). The partnership began in early 2003 in response to the concerns of families and physicians regarding the fragmented service delivery system for children with special health needs. PPEP’s initial pilot program was launched in 2004 and in 2005 Rhode Island applied for and received a Champions for Progress Incentive Award. In 2006, Rhode Island received funding through the President’s New Freedom Initiative to expand the number of PPEP sites, which is the effort they are continuing today. There are currently 22 participating medical home sites with over 2200 families enrolled in PPEP.

Learning the Ropes

To broaden parental knowledge and skills, RIPIN conducts a 2-week orientation training to teach the parents vital skills and to assess their unique assets. As part of the training, parents participate in a crash course called “Medicaid 101” and learn to work as part of a team. They then “shadow” an experienced parent consultant in a medical practice. Supervisors offer valuable mentoring, and a supportive relationship is typically formed. One of the most popular aspects of the training is a Professional Development Day that is held one day a month. During the course of this day, parent consultants can select the type of training they need from a list.

Finding the Perfect Match

According to Deborah Garneau, MA, of the Office of Special Health Care Needs at the RI Department of Health, one of the most successful aspects of parent consultant training is a “matching procedure.” Deborah points out that each practice in Rhode Island is unique with different needs. The goal of PPEP is to match a trained parent consultant with a medical practice that fits them best and maximizes their potential. Many times, the deciding factor is concrete, such as the practice needing a parent consultant who is bilingual.

Ms. Garneau emphasized that matching language and cultural backgrounds is more than just a convenience. She spoke of instances where the medical message coming from the doctor is not well received because the patient and/or family didn’t completely understand what they were being told due to language barriers. This prevented them from seeking proper treatment for the condition. In one case, a child with autism was confined to the home because the family, due to cultural reasons, was embarrassed of the child’s condition. Their parent consultant helped to explain the details of the condition so that the family could understand the medical terms and recognize that they were not at fault.

Lessons Learned

Deborah also described other important lessons from PPEP’s experiences. She noted that there was a lack of state support for parents around behavioral health and that medical care and behavioral health care needed better coordination. As a result, PPEP has developed a project that helps to integrate the two systems.

Deborah also stressed the need to strengthen the primary care system throughout Rhode Island. Right now, the data indicate that services provided for CYSHCN are half primary care and half specialty care, which places an undue burden on specialty care services.

Into the Future

The impact of the PPEP has been monitored from the start in order to measure the true sustainability of the model. It is critical for Rhode Island health plans to recognize and fund enhanced medical home practices without imposing credentialing requirements that would exclude the Parent Consultants. Currently, the RI Department of Health is conducting a comprehensive program evaluation with the Neighborhood Health Plan of RI to substantiate program outcomes and cost effectiveness.

Setting a Standard

Perhaps one of the most admirable things about the parent consultant model is that many aspects of it can be replicated by other states and communities. Communities in Washington D.C., South Carolina, and as far away as Puerto Rico have sought out technical assistance from Rhode Island and have been enthusiastic about the improvements made by the parent consultant training.

PPEP has been truly innovative in the use of parent consultants within the medical home and these efforts set a standard for other states and communities. Linda McMullen, PPEP Manager, sums it up by saying,

“We are so excited about the growth of the Parent Consultant Program in Rhode Island. Parent Consultants bring so much to their host agencies—a wealth of knowledge about resources and systems, training, and most importantly, the experience of what it is like to navigate systems for a child, family, and oneself. It’s the parent’s perspective that makes this job so special to our provider partners and the families we work with every day.”

To learn more about Rhode Island’s NFI and the Pediatric Practice Enhancement Project (PPEP), contact Deborah Garneau by phone (401-222-5929) or e-mail (Deborah.Garneau@health.ri.gov)

You can also download the Pediatric Practice Enhancement Project Brochure (PDF) or visit their website at http://www.health.ri.gov/family/specialneeds/ppep.php

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