Tag Archives: transition to adulthood

Staff Spotlight: Susan Hogarth

Susan Hogarth and her son, Jake
Susan Hogarth and her son, Jake

Susan Hogarth, whom you may remember from our November family story, recently joined the Family Voices Colorado team as the new Pediatric to Adult Health Care Transitions Navigator. In addition to learning the ropes of the Family Voices approach to family navigation support, Susan took a lead role in planning for Hearts on Fire 2013.

Susan was first introduced to Family Voices in April 2008, through the Arc of Jefferson County’s Mobilizing Families training program. She explains, “We were struggling with insurance denials for therapy for our son, Jake, and classification of developmental delay. The staff at Family Voices helped during the appeal process, attending conference calls with insurance agents and human resources. Family Voices provided the resource of an attorney who worked pro bono, resulting in the case being overturned and re-classification of disability such that all services were covered.”

In July 2012, Susan sought the help of Family Voices once again, this time with the application for the Medicaid Buy-In for Children with Disabilities, as Jake was on the CES waiver waitlist and not receiving Medicaid. He was approved for the Buy-In, and now receives the benefits of Medicaid coverage – including several therapies and other services not previously available – for a relatively low monthly premium.

Susan’s professional background is as a consulting actuary, but her passion was to leave that 20-year career to work with a non-profit, helping families of children with special healthcare needs. That dream came true in January 2013, when Family Voices hired Susan as a Transition Navigator. She tells us,

“The combination of my professional background as an actuary in the pension and healthcare benefits arena, and my personal experience as a mother of a disabled child with special healthcare needs, served as a perfect fit.  I have battled with insurance companies, spent hours in the hospitals, doctors office, therapy visits, durable medical equipment fittings, moved to other states thinking it was ‘better somewhere else!’ (which is a misconception as Colorado is one of the most well-educated states, and providing state of the art services including a high level of knowledge for technology), spending hours with the schools and IEPs, etc., just like many of the families we serve.

“I hope to provide some comfort to families that there is hope, and I can help them navigate the systems that all parents of children with special health care needs have to face on a daily basis. Colorado is stepping up to the plate, showing their support for the disabled community through the recent news relating to legislative budgets to include additional funding for individuals with disabilities currently on waitlists.

“It is exciting to work for Family Voices during this time, watching it grow into leader of navigation support in the community.”

We are glad to have Susan on board! Stay tuned for an announcement coming very soon about a new tool for families, health care providers, and other professionals: a Transition Guide that offers resources and tasks for each stage from age 10 through mid-20s!

Resources for Health Care Providers

HIPAA Privacy Rule Does Not Prohibit Disclosure of Threats to Safety

Last month, the Department of Health & Human Services issued a letter to health care providers to ensure that they are aware of their ability under the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule to take action, consistent with their ethical standards or other legal obligations, to disclose necessary information about a patient to law enforcement, family members of the patient, or other persons, when they believe the patient presents a serious danger to himself or other people.

Webinar: How to Engage Youth in Their Health Care

The National Center for Medical Home Implementation and Got Transition, the National Health Care Transition Center, invite you to join them for a webinar, “How to Engage Youth in Their Health Care” on Wednesday, February 27th.

Note that this is the first of a four part webinar series hosted by The American Academy of Pediatrics (AAP) and its National Center for Medical Home Implementation. Learn more about  “The Medical Home in Pediatrics: The HOW TO Webinar Series.”

What are your needs as a provider?

If you are a health care provider who works with children and youth with disabilities or special health care needs, what kind of resources would be most helpful to you?  Call 303-733-3000 or email communication [at] familyvoicesco [dot] org to share your perspective.

Young adults discuss identity & health care transitions

The latest findings from the Data Resource Center for Child & Adolescent Health identify that 3 in 5 youth and children with special health care needs did not receive the services necessary to make appropriate transitions to adult health care, work, and independence. This is a critical juncture and  missed opportunity for preventing the further onset of adult chronic conditions.

Since spring 2011, Family Voices Colorado has been working with the national Got Transition? initiative, Children’s Hospital Colorado, and several other local health care providers to implement a pilot project exploring the resources and supports needed for more young people with special health care needs to experience a smooth transition from pediatric to adult health care.

Our Health Care Transitions Navigator is Susan Cassell, so if you have questions about the process or would like more information – whether as a parent or family member, youth or young adult, or as a health care provider – please contact her at 800-881-8272, ext. 115, or on her direct line at 303-577-0331. You may also want to explore some of the resources at Got Transition?, like their quarterly webinars and monthly radio episodes:

Got Transition? Quarterly Webinar
Wednesday, November 7, 12 – 1pm MST (2 – 3pm EST)
“I am more than a diagnosis!” – The Impact of Personal Identity on Health Care Transitions for Young Adults with Special Health Care Needs

In this Got Transition quarterly webinar, Susan Waisbren, Ph.D. will review research on identity development and its impact on health promoting behaviors and positive mental health.

A panel of young adults with various health care needs will respond and share their current strategies coping with challenges as they move toward adulthood.

Space is limited, so be sure to register in advance!