Background
When 519 families of CSHCN were asked to rank which support services were most important to them, they chose “information about community services “ as the most important item. Physicians though ranked this item last when asked how they perceived families opinions about support services needed.
(Liptak G., and Revell G. Community physician's role in case management of children with chronic illnesses. Pediatrics, Sep 1989; 84: 465 - 471. Abstract.)

Roizen in 1996 noted that “the primary reasons that many families do not access available supports are because they are not aware of them and because of barriers that prevent access."

Families often look to their physicians for guidance and support, mainly in the form of collaborative problem solving and resource management.

The Need: a comprehensive resource guide that can be made available in a free, user friendly mode for both families and professionals.

Why?

• There are many national sources for resources but they are not able to provide comprehensive information for each city or state.
• These resources are constantly changing and thus it is difficult to keep track of.
• Many resources are commercially biased &/or offer inaccurate or unsound advice.
• Families vary in their strengths and weaknesses and thus have different support needs.
• The changing nature of their child’s condition(s) and it’s effects on the entire family changes the need for resources and supports over time.
  -Ron Levin, MD

Getting Started
1. Identify local and state resource guides that have already been developed. Evaluate their merit.

National 211
2-1-1 is an easy to remember telephone number that connects people with important community services and volunteer opportunities While services that are offered through 2-1-1 vary from community to community, 2-1-1 provides callers with information about and referrals to human services for every day needs and in times of crisis. For example, 2-1-1 can offer access to the following types of services:

• Basic Human Needs Resource: food banks, clothing closets, shelters, rent assistance, utility assistance.
• Physical and Mental Health Resources: health insurance programs, Medicaid and Medicare, maternal health, Children's Health Insurance Program, medical information lines, crisis intervention services, support groups, counseling, drug and alcohol intervention and rehabilitation.
• Employment Supports: financial assistance, job training, transportation assistance, education programs.
• Support for Older Americans and Persons with Disabilities: adult day care, congregate meals, Meals on Wheels, respite care, home health care, transportation, homemaker services.
• Support for Children, Youth and Families: childcare, after school programs, Head Start, family resource centers, summer camps and recreation programs, mentoring, tutoring, protective services.

You can find out more about your state 211 Program at: www.211.org/status.html

Substance Abuse & Mental Health Service Administration State/Territory Resource Guides
These fact sheets provide contact information for mental health agencies and advocacy organizations in each State, including the State Mental Health Agency, State Protection and Advocacy Agency, the Health Care Financing Administration, National Mental Health Association, National Alliance for the Mentally Ill, and statewide consumer organizations.

Title V Designated State MCH Toll-Free Hotline Directory
To aid families in obtaining information about State Title V and Title XIX programs and providers, Title V legislation requires that State maternal and child health agencies maintain a toll-free hotline. The national Title V toll-free hotline number is 1-800-311-2229 (Spanish: 1-800-504-7081).

Connecting Families: Maternal & Child Health Toll-Free Hotlines - Report
This document examines the operation and content of state maternal and child health (MCH) toll-free telephone lines. This report is intended to help state MCH programs analyze their existing toll-free lines and provide innovative strategies developed by states and territories that others may consider adapting as they look to provide resources to families.

ARC: www.thearc.org/familyguide/
The Arc is the national organization of and for people with mental retardation and related developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with mental retardation and their families. They offer state resource guides to benefits, supports, and services for families raising children with mental retardation and related developmental disabilities.

Early Intervention Program for Infants and Toddlers with Disabilities (Part C) under IDEA
One of the components of the program is to provide a central directory of services, resources, research and demonstration projects. You can locate your state coordinator and program web site at: www.nectac.org/contact/ptccoord.asp

Family to Family Health Information Centers
www.familyvoices.org/F2F.htm
Providing health care information to families that is family-friendly, and culturally sensitive, in order to help them make good health care decisions. Run by experienced parents, and supported by private and public funds. Family Voices has helped many of their volunteer network members, all of them parents, develop Family-to-Family Health Information Centers around the country. Currently there are 35 Centers. For a list of states with centers and contact information click here.

Parent Training and Information Centers and Community Parent Resource Centers
Each state is home to at least one parent center. Parent centers serve families of children and young adults from birth to age 22 with all disabilities: physical, cognitive, emotional, and learning. They help families obtain appropriate education and services for their children with disabilities; work to improve education results for all children; train and inform parents and professionals on a variety of topics; resolve problems between families and schools or other agencies; and connect children with disabilities to community resources that address their needs.

National Center of Medical Home Initiatives State Resource Web Pages
These pages are designed to keep you informed about events and activities happening in each state that will help improve access to medical homes for children, especially children with special health care needs. Under the “Family Corner” Section of these pages, some states have included links to local and state resource guides for children and families.

Back to Getting Started: Once you have identified local and state resource guides that have already been developed and evaluated their merit...
2. Create a local resource guide or enhance an existing one.
3. Compile local resource information from families, providers and the community.
4. Determine counties to include in resource guide.
5. Maintain all resource information in one computer file/database.
6. Provide contact information (address, phone, fax, e-mail, web site)
7. Provide one-line program/organizational descriptions and include eligibility and methods of referral.
8. Investigate opportunities to maintain an on-line resource guide

Suggestions on how to support and maintain an on-line resource guide:
The content should be gathered and critiqued by a committee made up of professional and family caregivers, state and local health officials, and representatives of some of the many resources.

Benefits of an on-line resource guide:

• Being online makes it easier and less expensive to maintain as programs come and go as well as change their services and eligibility.
• We can also more quickly respond to community feedback on what information we provide, how clear and easy it is to find, and what new topics/categories are needed.
• By compiling and organizing all of this information, healthcare and political leaders can easily see where the gaps and the duplications are.
• Families will be able to find the support they need to care for their child and thrive, and thus improve their quality of life.
• Printed resource guides are expensive both to produce and purchase, especially since they quickly become outdated.
• 98.9% of public library outlets with a connection to the Internet provide public access to the Internet ¹

Sample On Line Resource Guides are available at:

• Special Needs Resource Directory of Southwest Ohio:
  www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/
  The Center for Infants and Children with Special Needs at Cincinnati Children's Hospital Medical Center has created an extensive, one-stop resource directory to assist caregivers of children with specialized health care needs. The goal of the Special Needs Resource Directory is to provide comprehensive web-based information -- assembled in one convenient location -- to both parents and professionals. The resource directory is designed to be a quick, easy reference for all parents and medical professionals, regardless of previous computer experience.
  
• Family Village: www.familyvillage.wisc.edu/index.htmlx
  A global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology, adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more!
  
• Dane County Resource Roadmaps: www.waisman.wisc.edu/cshcn/Dane.pdf
  A quick guide for navigating community resources in your county for children with special health care needs. Developed by the Regional Center for Children With Special Health Care Needs - a component of the Wisconsin Title V Program.
• Illinois Life Span: www.illinoislifespan.org/
  Statewide information and advocacy coordination system for people with developmental disabilities

  This site includes The Arc of Illinois Family Manual for Transition. The purpose of this manual is to assist families of young adults with developmental disabilities with the transition from the school system and services for children to the world of work and adult services. The Family Manual is divided into three sections:
  1. Special Education and Transition Planning
  2. The World of Adult Services/Supports
  3. Services and Supports, Options and Trends

Additional Resources

ABCs of Folic Acid Counseling from the Spina Bifida Association
Take a new continuing education (CE) tutorial developed by the Spina Bifida Association with cooperation from the Centers for Disease Control and Prevention. A 10 question pretest will help you to find out how much you know.

Continuing education credits will be offered for nurses and health educators, based on 1 hour of instruction. After taking this CE tutorial, you will be able to:

1. Discuss the general importance of folic acid.
2. Discuss the folic acid recommendation.
3. Use the steps in folic acid counseling.
4. Use 1 minute of folic acid counseling during an interaction with a woman.
5. Identify women at risk for recurrence of spina bifida or another neural tube defect.
6. Prepare evaluation plans for folic acid counseling.

Taking folic acid prior to pregnancy can reduce the risk of neural tube defects like Spina Bifida by up to 70%. You owe it to your patients and to yourself to know everything about folic acid!

Take this informative course and earn continuing education credit. CEUs, CNEs and CHES credits are available. To take the course, go to http://sba-resource.org/sbaacd/.

Family Reflections: A Thought-Provoking Guide to Getting Help for Children & Youth with Special Needs
Built around a series of family stories, the guide is designed to supplement traditional resource directories. Children in the stories range from infancy to early adulthood and have a variety of medical, developmental, educational, and emotional/behavioral needs. Parents questions and concerns are extracted from the stories and matched with specific resources in the community. Also included are well-visit guidelines, advocacy tips, advice on navigating the system of services, and articles on transition for every stage of growth. Developed by The Central Massachusetts Partnership for Children and Youth with Special Health Care Needs.

1. Since 1994, Bertot & McClure have conducted studies roughly every two years that track the level of involvement, key issues, trends, and other aspects of public library Internet use. To view findings from their studies click here.

Last Updated December 11, 2006