You can help!

Champions for Inclusive Communities needs your help. Do you know of communities that are successfully creating systems of services for families of children and youth with special health care needs? A system of services is a family-centered, culturally competent network of community-based services that is designed to promote the health and well-being of CYSHCN and their families.

If you know of a community you would like to recognize for these accomplishments, and you have their permission, we ask that you please contact Cora Price with the name of the community and local contact information by March 27, 2009.  Email her or call 435-797-8026.

Read more about the Community Recognition Program

The following article is the first in a series that will bring you the “Youth’s Eye View” of coordinated, culturally diverse, community-based services for CYSHCN.

Every Day an Adventure: Part 1, Advice for Communities
Article based on interview with Quintin Williams

Quintin performs the same tasks as most 28-year old college students. He feeds his dog, checks his e-mail, and does his homework.  He enjoys spending time with his fiancée, Amanda (who since this interview has now become his wife), playing the drums, and gaming on his computer. He has lived independently since he was 19; he is currently studying finance and eventually wants to be a financial planner. Quintin is also legally blind.

Quintin plans his day the night before. His reliance on public transportation to get him to classes at Utah State University (USU) in Logan, Utah requires leaving the house 45 minutes early. And if you saw Quintin on campus, he would most likely be accompanied by his guide dog or a long cane he uses to get around. 

Quintin has learned a variety of skills for getting from one place to another with little or no assistance, but there are still times when he must ask others for help. “Some people know how to give good directions, some don’t,” Quintin said. Unfortunately, he’s encountered a number of people that seem to be uneasy around him and others with disabilities due to a lack of education and experience with the situation. He wants to emphasize that “we aren’t aliens!”

No matter the situation, Quintin has come to realize that “every day is a new adventure.”

A Vital Community Feature: Ease of Access to Services

Ease of access to community services is vital to people with disabilities for a variety of reasons. Quintin realizes this and acknowledges that he is lucky to live in a community with free public transportation that serves most major areas of the valley. Quintin also feels that the blind community in Logan is welcoming and accepting. As the small town becomes better known for its easily accessible transportation and small general population, more people with vision impairments are attracted to it. Quintin is excited that the blind community seems to be expanding.

It’s not all positive, however. The public transportation is free, but it is unavailable after 8:00 p.m. on weekdays and doesn’t start until 10:30 on Saturday. When public transportation is unavailable, Quintin must rely on rides from friends or a taxi.

Advice for Communities

Quintin has a few things he would change or improve about communities if he had the power.

First, he says that every service provider, from doctors to assistive technology retailers, needs to be receptive to the ideas of someone with disabilities instead of assuming that person is just like every other person they’ve treated. Realizing that everyone has individual needs is important for any health care provider, but it’s especially important for those treating people with disabilities. –

Second, he also believes that communities can do a lot to become more disability-friendly in general. One way to do this is to become more aware of people with disabilities who are already employed and who are searching for employment in the community. Treating them as individuals who have the potential to be a valuable contribution to the work environment is important. Quintin also advises communities to think about what they can do to ensure youth and young adults with special needs know how to advocate for themselves early on. Communities can play a vital role in ensuring schools have appropriate resources in place for students.  (Also look for this point to be expanded on in Part 2 of our highlight on Quintin).

Finally, Quintin says simply recognizing that “we have similar interests as everyone else” and acting on that idea goes a surprisingly long way.

A good recommendation for any community.

Sixty-seven University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) are located in every state in the country. Needless to say, they are widespread and useful centers. Their goal is to facilitate the flow of disability-related information between the university where they are located and the surrounding community. Each UCEDD is required to have a Consumer Advisory Committee (CAC), which allows individuals with disabilities and their family members to take an active role in advocating for their own needs and for others with disabilities. If you would like to become involved in your local UCEDD, or even the Consumer Advisory Council in your area, visit the website’s directory.

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The new Racial Equity Tools website is designed for any organization at any level that is working to promote racial equity. The more than 400 different resources are intended to encourage easy access to information that will support transformative change within communities, organizations, systems, and individuals.

more on our website about: Cultural Competence
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The National Institute for Health Care Management Foundation has produced an issue brief entitled Increasing Access to Health Insurance for Children and Families: Innovative Health Plan Outreach and Enrollment Efforts (PDF). This brief examines health plan efforts to increase enrollment in Medicaid and the SCHIP as well as to create and market affordable private insurance coverage options.

more on our website about: insurance
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A new module in the MCH Leadership Skills Development Series explores issues related to leading and responding to change in an organization. The module is comprised of activities, mini lectures, interviews, and other tools. This is an excellent resource for programs at the federal, state, or community level looking to improve leadership skills.

more on our website about: service integration
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Meeting the Challenge, Inc. needs your opinion about public transportation in your area. With funding from the Federal Transit Administration, they are conducting a quick survey to gauge general experience with transportation, especially those experiences of people with disabilities. The information will be used to assess what barriers still exist.

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The 2009 Family Voices Conference, Looking Forward: Keeping Families at the Center of Children's Health Care, will be held May 3-5, 2009. This conference will provide opportunities for the sharing of information, best practices, and resources. Proposals are being accepted for workshop and display-poster sessions. Deadline for submission is March 18, 2009.

more on our website about: family partnership
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The podcast of the AAP-hosted teleconference, Implementing Medical Home for All Children and Youth, is now available through a four different means. This call was held on March 3, 2009 and provided child health professionals with practical strategies for implementing medical home in their practice.

more on our website about: Medical Home
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Karen Davis, president of the Commonwealth Fund, was recently invited to testify at the U.S. House Committee on Ways and Means hearing about the need for a “system” approach to improving the nation’s healthcare. She also cited key recommendations detailed in the Commonwealth report, The Path to a High Performance U.S. Health System: A 2020 Vision and the Policies to Pave the Way.

more on our website about: Health Care Quality
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The Substance Abuse and Mental Health Services Administration (SAMHSA) is soliciting applications for their Family Centered Substance Abuse Treatment Grants for Adolescents and their Families to provide services to adolescents (ages 12-17), transition age youth (ages 18-24), and their families.

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