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Care Coordination for Children & Youth with Special Healthcare Needs
By Beth Dworetzky, MA Family-to-Family Health Information Center
MA Family-to-Family Health Information Center

boy taunting another boyA Medical Home is a model for delivering primary care. The American Academy of Pediatrics defines a Medical Home as: accessible, comprehensive, family-centered, compassionate, culturally and linguistically appropriate and coordinated.

The Maternal and Child Health Bureau defines “care coordination” as “services that promote the effective and efficient organization and utilization of resources to assure access to necessary comprehensive services for children with special health care needs and their families.” When services are coordinated, there is less duplication, fewer gaps in services and decreased risk of medical errors. For example, when a child with complex health needs sees many medical specialists, each may prescribe medications. If the child’s doctors have a complete, up-to-date medication list, they are less likely to prescribe medications that should not be taken together, or that would counteract a medication another doctor has ordered.

Parents raising children and youth with special healthcare needs (CYSHCN) understand the importance of coordinating their child’s care. In fact, if you ask a roomful of parents of CYSHCN if they have a care coordinator, few raise their hand. When you rephrase the question and ask which parents are their child’s care coordinators, many raise their hand. More and more primary care settings and hospital clinics are providing care coordination services for their patients with special healthcare needs. However, parents remain an essential partner in their child’s care, and still need to take an active role to ensure their child’s care is coordinated.

If you are not comfortable in your partnership role in coordinating your child’s care, or just need some management strategies, here are some tips and tools that may help.

  • Prepare for each visit with all health providers. For example, bring a list of medications, note any changes in your child’s health, positive or negative, since the last visit, and write down questions you and your child may have.

  • Make sure the primary care provider has a list of your child’s medical specialists and receives summaries of each specialty visit, including recent tests, procedures and the results. You should have copies of these too. Share information about any community services, such as early intervention, or special education services your child receives. When everyone has the same information, your visit can focus on well-child care and development, rather than spending the time updating the doctor.

  • After the visit, call for test results and ask for copies of written reports. Don’t assume a test was negative, or the results were within normal range just because you didn’t hear from the doctor or staff. Health providers are busy and, at times, test results get misinterpreted or filed incorrectly. It’s important to follow up, especially if a recent test was to rule out a suspected problem.

  • Ask about other community-based services and supports that may be helpful to your family. If the primary care office does not have this information, make sure to connect with the Family TIES of Massachusetts network. They can tell you about early intervention, their parent-to-parent matching program, support groups, and other services and supports in your area. Learn more at www.massfamilyties.org or call 1-800-905-TIES.

  • If you need information about health care financing options, contact the Massachusetts Family-to-Family Health Information Center at 1-800-331-0688, ext. 210, e-mail massfv@fcsn.org or visit www.massfamilyvoices.org.

For more ideas about what families can do to help coordinate care for CYSHCN, visit the Managing and Coordinating Care section of the Medical Home Portal at www.medicalhomeportal.org/living-with-child/caring-for-children-with-chronic-conditions/managing-and-coordinating-care.

Remember, when you work in partnership with your children’s health providers, early intervention staff, school personnel, and others, you model the skills your children and youth will need to take responsibility for their own health, to the best of their abilities, and to work together with health providers and others to make decisions about health services, community supports, and more.

Have a care coordination strategy that works for your children and family? Call or e-mail the MA Family-to-Family Health Information Center at 1-800-331-0688, ext. 210 or e-mail massfv@fcsn.org and we’ll post a list to our listserv and Web site.