Juanita Dominguez is a Spanish-speaking mom to three daughters, ranging in age from 3 to 17. Erika, her middle child, has spina bifida with secondary hydrocephalus. The main expression of this condition for Erika is that she cannot feel her legs and cannot walk, so she uses a wheelchair to get around.
At age 9, Erika is beginning to get a bit heavy for her mother to pick up on a regular basis, which meant that getting in and out of their family van was becoming increasingly difficult. Without a wheelchair ramp, Juanita had to lift Erika from her chair into the van, and back out again, any time they wanted to go somewhere. So they began asking the health care providers and others in the community how they might be able to get a ramp installed, allowing Erika to roll right up and into the van in her chair.
The first referral to a foundation that considers funding requests like this resulted in a dead end: to qualify, applicants need a driver’s license and a social security card, which was not possible for the Dominguez family. Fortunately, a staff member in the Special Care Clinic at Children’s Hospital Colorado referred Juanita to Family Voices Colorado, and the family got connected with Ileana Perez, one of our bilingual Family Navigators.
Ileana was able to direct the Dominguez family to Variety Colorado, a children’s charity that seeks “to provide life-saving and life-enriching assistance to children challenged by physical and mental disabilities, poverty, abuse and neglect.” Ileana helped Juanita apply for the funding of a wheelchair ramp for their van, and within a relatively short period of time, Variety Colorado approved the application, granting the family $1900 in total, plus a $200 gift card.
Juanita shared that her experience with Ileana and Family Voices was “Very fast, very friendly. There were no obstacles in getting the help we needed. I am so grateful.”
While grants fund much of Family Voices Colorado’s work, we increasingly rely on individual donations to help us fulfill our mission to increase access to and quality of health care for children and youth with special health care needs. Please consider supporting Family Voices on Colorado Gives Day, Tuesday, December 10, to help us continue making Colorado a better place for all families!
Suzette Elledge is the Program Manager for Health Coverage, formerly responsible for coordinating the Medical Home Certification program, now moving into a role overseeing Family Voices’ involvement with the new health insurance marketplace, Connect for Health Colorado. Although her employment with Family Voices Colorado (FVC) began in 2009, she first got involved with us some 12 years ago, when her two sons, Jacob and Joshua, were diagnosed with autism.
Suzette explains, “Their diagnosis came only months apart and Joshua was receiving Early Intervention and Jacob was receiving services through a preschool program. My service coordinator shared resources with me and I called Family Voices to get help understanding everything that was happening and how to stay on track with their services.”
But prior to that diagnosis, Suzette had already accrued 17 years’ experience working in disability and family support service systems. She began working with families of children with special health care needs at the ARC of Sacramento (California) in 1984; studied Occupational Therapy and Psychology at San Jose State University; worked with Family Support Services of the Bay area in Family Preservation, Respite and Family Services; and taught at the Morgan Center in California.
After receiving her sons’ diagnosis, she says, she “decided not to continue to work in direct services since I was encompassed with them at home, but wanted to continue to serve families, so I worked as an Early Intervention Service Coordinator at Developmental Pathways.” She was working for CHP+ outreach and enrollment in 2007 when FVC approached her about joining the Board, and two years later, when a position opened up in the Family Support 360 program, she jumped at the chance to join the staff.
Those who know her well have experienced Suzette’s bubbly personality, her love of Tinkerbell and glitter; and her unabashed enthusiasm for her work:
“The absolute best part of my work is the people. From those I work with to those who I get a chance to collaborate with in the community, and especially the families. I have worked with probably thousands of families over the past almost 30 years and I continue to be inspired and humbled by the dedication and strength that I witness. When a family receives a diagnosis, whatever it is, it seems that something incredible happens: a strength, devotion and resilience that drives a determination that is both powerful and tender. I learn lessons every day from the experiences that I share with families.”
This summer, Suzette is working with Ileana Perez to prepare for FVC’s new role as an Assistance Site in Colorado’s Connect for Health Assistance Network. Suzette sees this work as aligned with the organization’s orientation toward staying on the forefront of new developments in the health care landscape so as to better assist consumers, especially families of children with special health care needs, who are often more frequent and more intensive users of systems than those with typical children and adults.
The work itself involves providing in-person assistance to customers of the new health insurance marketplace starting in October 2013. As part of the Connect for Health Assistance Network, Family Voices will serve clients across the state, helping individuals and families consider health plan options, apply for insurance affordability programs, and sign up for health coverage. Although anyone can call any assistance site, the focus for FVC’s outreach and support will be families of children with special health care needs.
Suzette is currently working on a degree in nursing from Colorado Christian University, and looks forward to serving families and individuals in a new way once her program is complete. In the meantime, she is a strong advocate not only for the families she serves, but for the organization as well:
“The most exciting thing Family Voices has to offer families is a team of people with an incredible amount of knowledge and understanding of the world of disability and what it takes to negotiate that successfully. We also work diligently at building and maintaining strong community partnerships so that we can have beneficial relationships with other entities and the work for families can be strengthened. The team understands the intricate rules and languages of systems and works with families to strengthen their knowledge and confidence. Families can know that they are not alone on this journey and I’m exceptionally proud to be a part of an organization that can say that.”
Family Voices National is partnering with Genetic Alliance and Parent to Parent USA (P2P) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families, or others living with the same condition. To date, we have collected over 240 resources that will help users build leadership, communications, outreach, and advocacy skills. The tools will be part of an accessible online toolkit, with advocacy resources grouped by topic area.
We would like to include a personal story that demonstrates the importance of advocacy from an individual, family member, or caregiver in each of the toolkit topic areas.
For this project, ‘advocacy’ can include any example of a time when you or your family communicated a need, shared your story, or took steps to get something you wanted or needed.
Do you have a story to share about advocating in one of the following areas?
Transition to Adulthood
Insurance and Financial Assistance
Communicating about Your Health
Access to Health Care
To have your story included in the advocacy toolkit for individuals and families, please send a 1- to 3-paragraph summary to Sharon Romelczyk, Program Manager at firstname.lastname@example.org. Please only include information you wish to be shared, including any and all names or other identifying information.
If we include your story on the toolkit, we will contact you to let you know your story has been selected. Please let us know if you have any questions about the stories, how they will be used for the toolkit, or the toolkit in general. Thanks!
Making Colorado a better place for children and youth with special health care needs