All posts by familyvoicesco

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.

Season’s Greetings! A note from Tom Rose, Executive Director

Dear Friends, Colleagues, Advocates, and Supporters,dancing snowman in a snow globe

The weather has finally turned colder, we’ve seen a couple dustings of snow lately, and as we move through the holiday season, we here at Family Voices Colorado are counting our blessings:

First, thank you to all who donated on Colorado Gives Day! Our individual giving increased by 18% over last year, and we are grateful for the support. Your gift makes it possible for us to continue providing services to families and professionals free of charge. There is still time to make a tax-deductible contribution before the end of the year; just visit and click on Donate Now.

Second, we have come through a year of change and transition that was challenging at times, but has positioned Family Voices well to continue to grow and evolve in the future. We have plans for new programs and services, including some funding possibilities, that we are very excited about. As soon as those are a little more settled, I look forward to sharing more information with you.

Over the last couple months, we have worked with The Colorado Health Foundation to reach out to different media about the Medicaid Buy-In for Children with Disabilities, resulting in a TV interview in Grand Junction and an article in the Denver Post. We are very pleased to have our work with families highlighted, as well as raising public awareness of the new Buy-In program as one of many ways that Medicaid helps support families in our state.

Last week’s tragic news from Connecticut continues to weigh heavy on my heart. I hope this holiday season brings you peace and joy even in difficult times, and know that whatever you are going through, you are not alone. Although our office will be closed December 22 – January 1 so staff can enjoy time with their families, we are checking voicemail each day in case of urgent messages. If we can help you access resources, navigate systems, or advocate for a child with special health care needs in your life, please let us know.

Happy Holidays, and best wishes for the New Year!


Tom Rose, Executive Director

Read our full December newsletter.

Essential Health Benefits and the Affordable Care Act

Family Voices (National logo)

This article reposted with permission from National Family Voices.

Affordable Care Act: Essential Health Benefits & Habilitative Services 

by Brooke Lehmann and Janis Guerney

The Department of Health and Human Services (HHS) recently issued a proposed regulation that, among other topics, addresses the “Essential Health Benefits” that must be included in certain health plans pursuant to the Affordable Care Act (ACA).  The proposed regulation raises serious concerns about the availability of “habilitative” services-therapies and devices that help individuals to acquire or maintain skills or function.

BACKGROUND: The ACA requires that a package of “Essential Health Benefits” (EHB) be covered in all health insurance plans sold in Exchanges and in all non-grandfathered individual and small group policies for plan years beginning in or after 2014.

ACA Essential Health Benefits List:

Girl receiving injection from female doctor
Image courtesy of David Castillo Dominici /
  • ambulatory patient services
  • emergency services
  • hospitalization
  • maternity and newborn care
  • mental health and substance use disorder services
  • prescription drugs
  • rehabilitative and habilitative services and devices
  • laboratory services
  • preventive/wellness services and chronic disease management
  • pediatric services, including oral and vision care

The Department has proposed that each state establish its own set of EHBs, based on a “benchmark” plan selected from one of four types of plans sold in that state (e.g., largest small group plan, largest HMO).  If a state fails to select a benchmark, then the default will be the largest small group plan in the state.  About half of the states have already identified their benchmark choices, which must be made by December 26.

HABILITATIVE BENEFITS:  With respect to habilitative services, the proposed rule is quite troublesome.  If the state’s benchmark plan does not include any habilitative services, the state would be able to define that benefit.  But HHS does not provide guidance about how states should do so.

If a state declines to define habilitative services, then insurance plans will determine the benefit.  Each plan must either provide habilitative services that provide parity with rehabilitative services, or establish its own set of habilitative benefits and report them to HHS.

If insurers get to define habilitative services without any parameters, each one will have an incentive to provide minimal benefits, so that its plan will not attract a disproportionate number of people who need costly habilitative services.

Family Voices and other groups will be submitting comments on the proposed regulation and we urge others to provide public comments on benefits that are important to CYSHCN.   Submit comments by 12/26 at!docketDetail;D=CMS-2012-0142.
Contact the FV Policy Team with any questions:
Brooke Lehmann, MSW, Esq.: or 202-333-2770
Janis Guerney, Esq.:  or 202-546-0558

Learn more about Essential Health Benefits at this page.

Early Intervention: A stitch in time…

Have you ever noticed how many proverbs and sayings relate to thinking ahead? A stitch in time saves nine. A penny saved is a penny earned. Look before you leap. An ounce of prevention is worth a pound of cure.

Early Intervention Colorado logoWhen it comes to children’s healthy development, there’s a step between prevention and “cure,” and it comes in the form of Early Intervention. Over the years, health care professionals have found that identifying delays in development, whether physical, cognitive, or behavioral, and diagnosis of ongoing health conditions at an early age, and addressing them immediately, can make a tremendous difference in long-term outcomes. Because this is not only better for the child and family, but also more cost-effective, than waiting until more serious problems develop later in life, many early intervention services are publicly funded, meaning that families do not have to pay directly for thingsBaby Corrine & Grandma like speech, physical, or occupational therapy.

Anyone can refer a child for screening to find out if they are eligible for early intervention services, whether you are a family member, doctor, child care provider, or other concerned individual. Visit or call 888-777-4041 to talk to someone at Early Intervention Colorado about the process of making a referral, or the services and supports available.