Category Archives: Tools & Resources for Families

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:

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 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 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!

7 Things You Need to Know about Health Care Reform

Health Reform: Seven Things You Need to Know NowWith President Obama’s reelection, the Affordable Care Act is here to stay. Read up on 7 Things You Need to Know Now, including the new protections and benefits that are already in place, and the changes coming in the next two years, in this article from Consumer Reports.