September 2012

See the Portal in Action

Last month, Dr. Norlin demonstrated the Medical Home Portal for a Montana St Vincent Healthcare pediatrics conference. His presentation focused on a typical busy day in a pediatric practice, and shows the ways the Portal can provide up-to-date information about assessment, practice guidelines, resources and services for children with chronic and special needs. The presentation was recorded, and you can stream it here: Medical Home Portal - Day in the Life.

New on the Portal

New Portal Content
Biotinidase Deficiency Early Services (updated, formerly "Birth to 3")
Mucopolysaccharidosis Type 1 (updated) Assistive Technology
Recreation Activities
Coming Soon
Hearing Impairment Autism Spectrum Disorder (update)
Special Needs Trusts

Your Medical Home - Electing for Advocacy

In this election season, families can take the opportunity to build their advocacy skills. Letter writing is an important way for families and young adults to engage in advocacy, particularly around election time. Families can write letters to newspapers, community organizations, and state and federal legislators. Letters can explain why services are needed, how cuts affect families, and what changes can improve people’s lives and help them participate in their communities. (Of course, these days, it’s more often email writing.)
Young adults and parents can also serve as advocates on boards and committees for local, state, and national organizations. This level of advocacy can help shape services for other families, provide connections to other services, and provide social opportunities for families and young adults. Contact your favorite organization, or one that has been causing challenges for your family, and ask how you can be involved in improving their services.
Voting is a critical tool in the advocacy toolbox. Parents and young adults with disabilities should vote in every election. Registration materials can often be found at your local post office or through your county government offices. Local newspapers and television stations offer information about candidates and issues. Permanent vote-by-mail offers time to research issues and the ease of voting at home. Regardless of your political views, every eligible person should register to vote by early October and vote on Election Day, which is November 6, 2012. Sometimes laws are passed and candidates elected with very small margins, so encouraging families and young adults with special needs to vote can potentially change the election results. Every vote counts.
If families are looking for more information about advocacy, they can visit the Advocacy/Finding Your Voice page of the Medical Home Portal.

Authors & Reviewers

Initial publication: September 2012
Current Authors and Reviewers:
Authors: Alfred N. Romeo, RN, PhD
Mindy Tueller, MS, MCHES