Tag Archives: Family stories

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!

Tell your story

At Family Voices Colorado, we’re always eager to hear the stories of the families we serve, both the challenges you face and the resources that help you overcome those obstacles. Below is an opportunity for mothers in particular to share their stories for publication, but whether you are a mother, a father, a grandparent, a sibling, or any other kind of caregiver, we would love to hear from you, and to see any photos or videos you are willing to share with us as well.  Email communication [at] familyvoicesco [dot] org or call 303-733-3000 x104 to learn more.

Seeking Submissions from Mothers of Children with Special Needs for Anthology

Most of what is written about mothers who are the primary caregivers of children with special needs is written by “outsiders.” The dominant view of deficit or burden is an unrealistic depiction that emerges from the medical, educational, or social service community, who serve or service children with special needs. Accepting the paradigm that mothers of special needs children are challenged and marginalized leaves little room for any other understanding that the actual lived experience of the mothers is—as it is with all human beings—a much more complex socio-cultural process than it appears. We want people to see, experience, and feel how mothers of children with special needs live with challenges that are, yes, lived painfully and differently than what most people outside of our world understand, but also generously, fully, and joyfully.

We believe in the power of story. Story transforms. Our hope is that your stories will illustrate a realistic tableau of the lives of mothers of children with special needs.

Mothers of children with special needs, please consider submitting:

memoir essay OR
poetry OR
graphic or illustrated essay OR
narrative photo essay

Submissions must address one of the themes listed below:

Challenges: Sometimes it sucks.
Purpose: I learned my own power; I get “it.”
Providence: Why was I chosen?
Pure Joy: Their joy is my joy!
Joy?: It’s the simple things.

Guidelines

  • Multiple submissions are allowed.
  • Please do not submit work that has been previously published or that you are
  • simultaneously submitting.
  • Please submit essays 6,000 words or less and no more than 6 poems.
  • Please format your work in Times New Roman, 12-pt, double-spaced font.
  • Include your name, email address, phone number on the first page of your document.
  • All illustrations or graphics must be in black and white.
  • Work should be submitted as a .doc, .docx, or .rtf file.
  • Photos should be submitted as a .jpg, .tif, or .gif file.
  • Save your files with your last name_title.

Email submissions to lizwhiteacre@gmail.com. Submissions must be received by Monday, April 22, 2013.

You will receive a confirmation email that your submission has been received and can anticipate a response in regards to acceptance in 6-8 weeks.

Each contributing writer will receive one copy of the final and published book. There will be
no other monetary compensation. A publisher has not yet been selected, so we are unsure of a
timeline for publication.

This anthology is the vision of mothers, writers, disability advocates, professors, and editors
Darolyn “Lyn” Jones and Liz Whiteacre.

About the Editors

Lyn Jones has facilitated the Indianapolis Special Needs Mom’s Writing Group for seven years now, asking mothers to gather and write about the challenges and joys of being a mother to a child with a disability. As well, she has focused her ethnographic and narrative research at Ball State University on mothers and individuals with disabilities.

Liz Whiteacre teaches creative writing at Ball State University and has been an editor for literary magazines and the University of Indianapolis Press. She was awarded an Inglis House Poetry Award in 2010 and was nominated for a Push Cart Prize in 2011. Her poetry has appeared in Wordgathering, Disability Studies Quarterly, Disabled World, and other literary magazines. Her chapbook, Hit the Ground, is forthcoming from Finishing Line Press.

Only one week left until Hearts on Fire!

Dancers in front of flaming heartHearts on Fire is just one week from tomorrow, on Saturday, March 2, at 7pm. If you haven’t bought your tickets yet, sign up today – you won’t want to miss the food, drinks, music, silent auction, or especially the dancing!

Here’s an excerpt from our press release:

“This is the kind of event that’s really fun to come to,” explains Tom Rose, Executive Director. “We’ll have terrific food catered by local Mexican restaurant Diego’s, live music from the  Manuel Molina trio, open bar, salsa dance lessons and a dance contest, in addition to our silent auction and plenty of time for mingling. We’re creating the feel of a Mexican cantina, really festive. Personally, I’m really looking forward to it. I’m just a little nervous that my wife will want me to take a turn on the dance floor!”

Read the full press release:

Press Release – Hearts on Fire Event, Family Voices Colorado.

Buy tickets online here – just $50 each or $90 per couple.