April 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.
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.
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:
Looking back over the past year, Family Voices Colorado has a lot to be proud of:
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 Briefprepared by Family Voices National.
In 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.
While 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.
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
As 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!
During the past year I have often been asked how Family Voices has weathered this time of transition, and what we are doing to prepare for the upcoming changes to the health care system. In case you, too, are curious, this is what we have been up to:
Last September we moved our office to the Anschutz Medical Campus, which provides us with a state-of-the-art and accessible office in close proximity to partners like Children’s Hospital Colorado and JFK Partners. In addition to high quality IT services and upgraded infrastructure, the new office was designed as a call center, which has enabled Family Voices to help more families with timely information and referral services.
Of course, holistic Family Navigation and Advocacy are still a primary area of focus, with experienced Family Navigators working closely with interns from the University of Denver School of Social Work to assist families. Our internship program provides a rich experience in navigation, advocacy, and call center operations for first- and second-year Master of Social Work students. The renewal of our federal Family-to-Family grant funding has also been instrumental in providing the resources to expand our capacity for information and referral as well as family navigation.
Hospital-Based Family Navigation
Family Navigation services are in high demand, and since the first of the year we have expanded our services beyond the Neurology Clinic at Children’s Hospital to also include the Child Health Clinic. This year we also began providing navigation services in partnership with Denver Health’s Special Needs Clinic. We believe our hospital-based Family Navigators can play a key role in ensuring family-centered care, improving quality and outcomes, and reducing health care costs. (See related article for more details.)
Since 2011, Family Voices Colorado has been working on a pilot project funded by The Colorado Health Foundation to develop tools and processes that support youth and young adults with special health care needs in the transition from pediatric to adult care. In that time, the issue of transition to adulthood has become a big topic of discussion at the state and federal level, and Family Voices is well positioned to provide leadership in developing person-centered transition services in a variety of domains.
Our first tool is a Transition Guide that displays the tasks for each age level in five different domains: Life Skills for Emerging Adults, Family Involvement, School, Career Planning, and Health/ Health Coverage. In addition, this program is working to expand the network of adult providers who will accept young adults with special health care needs, and has expanded our transition services to include transition clinics at both Children’s Hospital and Denver Health. We have also recently launched a behavioral health transition program called Your Life. Better. 24/7. More to come on this program in a later edition.
Policy and Advocacy
Family Voices Colorado continues to speak on behalf of children and youth with special health care needs, their families, and the professionals who work with them at the policy level. With so many changes in the systems serving our families, it is critical that Family Voices continues to work closely with its advocacy partners to make sure systems become more person- and family-centered. This past year Family Voices has played a critical role in empowering families to share their stories with legislators and state agencies, explaining how recently implemented laws and regulations are affecting their day-to-day lives.
New Grants, Contracts, Projects and Opportunities
Recently Family Voices was awarded a project/planning grant of $118,000 from The Colorado Health Foundation for a project entitled Personal Health Records and Family Navigation: A Plan to Improve Quality and Expand Agency Capacity. Over the next nine months, Family Voices will develop a plan for a pilot project that will utilize personal health records (PHRs) to improve the quality and expand the capacity of Family Voices navigation services for children and youth with special health care needs. As part of this project we will be working closely with the Colorado Regional Health Information Organization (CORHIO) to identify technical requirements and policy issues related to the connection of PHRs to Health Information Exchanges.
This is a huge opportunity for Family Voices to shape the future of personal health records, their feasibility as a navigation tool, and most importantly their usefulness to our clients and their families. Coming so soon after our selection as an Assistance Site for Colorado’s Connect for Health Assistance Network, this positions Family Voices to contribute in two significant components of Colorado’s implementation of the Affordable Care Act.
Moving on to our work around the state, due to the exceptional work performed by our Western Slope Family Navigator Colleen Roahrig, our contract with the Mesa County Partnership for Children and Families was expanded at their request to nearly $3,500 per month. This, in combination with Colleen’s successful launch of the Mesa County Family Leadership Training Institute, has significantly increased our impact in that part of our state. Brava, Colleen!
We are pleased with these affirmations of Family Voices Colorado’s position as a trusted community-based and family-driven organization with a powerful voice in the world of health care policy and advocacy for young people with special health care needs. We are currently engaged in an organization-wide strategic planning and business model development project to ensure that we are tackling these challenges and opportunities in the most effective way possible.
Thank you for your support of our organization. Have a terrific summer day!
Family Voices Colorado