Category Archives: Tools & Resources for Families

Colette’s Family Story: Navigating the appeal process

Specialized feeding and positioning chairColette’s 5-year-old daughter, “Rebecca,” was born prematurely at 24 weeks, and has multiple diagnoses, including chronic lung disease and chronic lung failure. Rebecca is dependent on oxygen 24 hours a day, and because of her lung disease, has special feeding requirements, including that she be seated upright or at a particular angle in order to prevent acid reflux, which would have the likely complication of pneumonia. To meet Rebecca’s medical needs, she required a special feeding chair, one that would keep her at the right angle and also avoid the risk of bedsores, since the chair would also be used for other activities.

Colette, who has a professional background in disability advocacy, applied for the appropriate chair through the rehabilitation equipment company designated by Medicaid, and was denied under the rationale that the chair did not qualify as Durable Medical Equipment. Knowing Medicaid’s emphasis on medical necessity, Colette prepared and submitted letters from her daughter’s occupational therapist, pediatrician, and physical therapist, all emphasizing that the feeding chair was medically necessary for Rebecca’s health and development. When the request was still denied, Colette reached out to Family Navigator Sam Murillo at Family Voices Colorado.

Step by step support

Because Colette had previous professional experience pursuing a Medicaid appeal, she knew what steps to take, and she knew it would be a lengthy and tedious process. But what she had not anticipated was how emotionally draining the process would be as a parent: where her professional experience had allowed some degree of objectivity, she found that as a parent, she was deeply frustrated by knowing how necessary the feeding chair was for her daughter, and by the need to defend the request to an institution that claimed to have a commitment to meeting her daughter’s medical needs.

Sam Murillo, Family Navigator
Sam Murillo, Family Navigator

In describing how Family Voices Colorado helped Colette and her family navigate this intensely difficult and overwhelming process, Colette shared, “Sam was wonderful. He walked us through every step, and was very encouraging and informative.” Recognizing the potential for information overload, Sam broke it down into manageable pieces and met the family where they were. Before submitting the appeal paperwork and documentation, he brought in his supervisor to ensure that nothing had been overlooked. When Medicaid called Colette a week before the scheduled court hearing, wanting to settle the matter directly with her by phone, Sam was available as a third party on the line to serve as a witness and help ensure accountability for what was promised. Just days before the court date, the feeding chair was approved.

Finding peace of mind

Colette adds, “Even having a background in the field, it was still hard for me to navigate the appeal process. For parents without that experience, I can’t even imagine how difficult it is. It was a wonderful blessing to our family to have Sam.

“We have had the chair for over a year now, and I don’t know what we would do without it… Families of children with special health care needs understand – where others might not – what a big deal something like a feeding chair is for a medically fragile child. Knowing that it keeps her out of a hospital stay for pneumonia, that she is able to eat without food going into her lungs, that gives me tremendous peace of mind, just knowing that she is safe.”

How Family Voices helps families and children thrive

Families of children with special health care needs face tremendous challenges in making sure their children get the therapies, equipment, and specialists they need to thrive. Family Voices Colorado believes that every child should have access to high quality, coordinated, comprehensive, family-centered health care, regardless of diagnosis or family income.  Every day we help parents find peace of mind by walking them through the steps they can take and resources they can use to help their children enjoy healthy and happy lives.

Colorado Gives DayIf you believe in the work we do at Family Voices Colorado, please make a donation at GivingFirst.org/FamilyVoicesCOColorado Gives Day, December 4, 2012, is an especially valuable time to make a donation, because the FirstBank Incentive Fund increases the value of every dollar contributed on that day. You can schedule your donation in advance for Colorado Gives Day, or set up a recurring gift to provide ongoing support. Your generosity helps us make a difference in the lives of families like Colette’s. Together, we can make Colorado a better place for children with special health care needs.

Family-Centered Care Assessment: Provide your input, improve health care measures

Families: Help Family Voices, Inc. (NationA doctor sits at the bedside of a young girl in a hospital bed while her parents look onal) improve family-centered care by completing a questionnaire: http://www.surveymonkey.com/s/FCCA-F-1a.

From Family Voices:

We need your help with a very special project – testing the REVISED Family Voices Family-Centered Care Assessment for Families (FCCA) questionnaire. This questionnaire allows families to evaluate the quality of the family-centered care they receive from their health care providers. It’s very important to be able to measure the quality of family-centered care in a particular situation in order to know how it could be improved.

For this review process, we need at least 600 parents and caregivers from around the country to complete the questionnaire, which takes about 15 – 20 minutes. This will help us know which questions work best to measure family-centered care, and what adjustments may be needed. The result will be a shorter, more powerful questionnaire that can be used to measure how effectively family-centered care is being implemented in particular health care situations.

Please help us support excellent family-centered care around the country by completing the Family-Centered Care Assessment Questionnaire at http://www.surveymonkey.com/s/FCCA-F-1a. Thank you in advance for your help.

The Hogarth Family Story: Crippling out-of-pocket costs

As we approach Colorado Gives Day on December 4, we want to share a few family stories so you know the difference we can make in families’ lives when you invest in Family Voices Colorado. If you’d like to share your story, or if you are facing similar challenges and would like our help navigating systems and accessing resources, please call 800-881-8272 or email info@familyvoicesco.org today.

Jake Hogarth at Adam's Camp
Jake Hogarth at Adam’s Camp

The Hogarth family’s story

Consider the story of the Hogarth family, whose seven-year-old son, Jake, has Angelman Syndrome, a genetic disorder involving significant developmental delay, seizures, movement and balance problems and behavioral issues. Though Jake has been covered by both parents’ private insurance plans, his parents, who are divorced and live in Aurora, were confronted with out-of-pocket expenses in the range of $1,000-$1,500 each month for co-pays, therapies, and equipment not covered by insurance. The Hogarths were completely committed to the services Jake needed to thrive, but they struggled to make ends meet given the high cost of his care.

Jake's first day of 2nd grade
Susan & Jake Hogarth, first day of school, August 2012

Fortunately, with the assistance of Family Voices, Jake was able to enroll in Colorado’s new Medicaid Buy-In Program for Children with Disabilities. He is now able to access many new services, including speech therapy, physical therapy, a new communication device, and orthotics, allowing him to make significantly more progress toward his health and developmental goals, without his parents facing crippling out-of-pocket costs. Today, Jake’s mom is highly active with Family Voices and is working with the state’s Medicaid agency to identify and resolve challenges within the system.

How we work

Tom Rose & Ileana Perez in the new Family Voices Colorado office
Tom Rose & Ileana Perez in the Family Voices office

Family Voices Colorado believes that parents of children with special health care needs should not be alone when they face the scary and confusing task of securing care for their children. Every day we give parents the information and strength they need to navigate complex health care systems in order to get things like wheelchairs, oxygen, or surgery for their children. With our help, parents are able to be the heroes their children are counting on.

When Family Voices Colorado works with a family, we draw on a breadth of professional knowledge and personal experience to identify the resources available, to help them overcome obstacles, and to access the health care services and equipment their child needs. Our staff also serve on several policy committees and working groups that seek to improve health care systems and services, so we can stay in touch with cutting-edge developments like the Medicaid Buy-In for Children with Disabilities.

How you can help

When you donate to Family Voices, your gift helps us support and empower families like the Hogarths to access better care and more services so that children with special needs can thrive, and parents and other caregivers become leaders and advocates in the community. Schedule your donation today for Colorado Gives Day, December 4. Thank you for your support!