Tag Archives: special health care needs

Autism Awareness Month

autism awareness ribbonApril is Autism Awareness Month, and with the recent and rapid increase in the rate of autism diagnosis (current estimates are that 1 in 68 children are affected by the disorder), we want to highlight some resources available for families, professionals, and community members. (Of course, Family Voices Colorado serves families of children with any kind of disability or special health care need, any condition lasting 12 months or longer that means a child requires more health care and related services than is typical at a given age.) Read the National Family Voices article on Autism Awareness Month, or the United Nations’ page on World Autism Awareness Day, April 2.

What is autism spectrum disorder (ASD)?

Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors…. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

~ From Autism Speaks website

Autism is sometimes classified a developmental disability, other times considered linked with mental health concerns. These diverging professional views can complicate health insurance claims if a given policy provides limited coverage for mental health or behavioral health treatment, but would cover a diagnosis that falls under the category of a “neurological condition” with a physical basis or origin.

Jake & Josh
Jake & Josh are the sons of Family Voices staff member Suzette Elledge, and both have a diagnosis on the autism spectrum

If you have had difficulty getting access to or coverage for treatment (including ABA therapy) for your child with autism, please call Family Voices today, 303-733-3000 or 800-881-8272, to speak with one of our experienced Family Navigators. We can’t guarantee coverage, of course, but we can help you understand your options within whatever private or public health insurance plan you have.

More fact sheets & basic information about autism:

Colorado & National ResourcesI am more than autism

Our impact in 2013

Looking back over the past year, Family Voices Colorado has a lot to be proud of:

The Dominguez family are among thousands helped in 2013
The Dominguez family are among thousands helped in 2013

We served more than 11,500 families and 4,500 professionals from June 2012 to May 2013, through a combination of direct assistance, trainings, print and electronic resources, and our Family-to-Family Health Information Network.

As a result of assistance/training provided by Family Voices Colorado, 91% of families report being better able to partner with health care providers in decision-making, 97% report that they are better able to find and/or learn about community services, and 94% report more confidence in getting necessary health care and services for their child with special needs.

Our team works hard to support families through the challenging tasks of securing services and resources for their children, and we celebrate when evaluations demonstrate that we are achieving our goals. You can read more about the context for our work in this Colorado Data Brief prepared by Family Voices National.

ConnectforHealthLogo-centered2In the last year, we have also launched two new program areas: Life Coaching through Your Life. Better. 24/7., and Health Coverage guidance through the Connect for Health Colorado Assistance Network. Through these programs, we are supporting young adults with behavioral health challenges in developing skills and making choices that will enable them to thrive, and helping individuals and families understand their options under the new health insurance marketplace.

"Guide to Transition" tool is a paper wheel that displays transition goals and tasks by age and life domainWhile our mission continues to focus on children and youth with special health care needs, we have identified a need for greater support to families and young people through the first part of adulthood. The transition from pediatric to adult health care systems can be challenging for any family, and those who live with disabilities or complex medical needs often encounter even greater obstacles to securing the services and support they need. Our Guide for Transition (also known as the “Transition Wheel”) was released to guide families through the tasks for each stage of adolescence approaching adulthood, and is now available in several other states through the national Family Voices network.

Sam Murillo, Director of Navigation Programs
Sam Murillo, Director of Navigation Programs

Finally, we expanded the hospital-based Family Navigator program from one staff person at Children’s Hospital Colorado to three staff, two of whom are at Children’s and one at Denver Health. We envision continued growth in this area as we demonstrate the tremendous benefits to children and families when they can receive referrals to community-based resources and services before leaving the hospital.

As we look forward to the months ahead, 2014 looks just as promising as 2013. For the past several months, we have been developing plans for a new project that will provide Personal (electronic) Health Records (PHRs) to support greater care coordination for low-income clients. These PHRs will be owned by the individual rather than by their health care provider. The planning stage has been funded by a grant from The Colorado Health Foundation, and we will soon apply for funds to support the full implementation of this vision.

Other areas of focus in the coming year include:

  • Expanding our capacity to assist families, who are calling in ever increasing numbers
  • Continuing to make sure that families’ voices are heard in policy conversations
  • Helping families navigate Medicaid expansion and the Affordable Care Act

Dancers in front of flaming heartAs we gear up for another exciting year, we hope you will join us for Hearts on Fire, which in 2014 will be a special Valentine’s Day happy hour fiesta. Be sure to register now to get the best price on tickets! Whatever your romantic status that day, we hope you’ll come and “wear your heart on your sleeve” for children and youth with special health care needs.

As always, we are grateful for your continued support and partnership with Family Voices Colorado in so many ways. If you need help navigating systems, accessing services, getting health coverage, or building capacity for system change, please give us a call!

Juanita’s Family Story: Getting Around the Obstacles

WNR 2013 Dominguez family-horiz
Juanita and her daughters at the October 2013 Walk ‘n’ Roll

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.

Erika uses her new wheelchair ramp
Erika uses her new wheelchair ramp

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.”

Web Ad CGD VertRectangleLinkedWhile 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!