The Rockwell Family Story: Fighting to keep everyone safe

The Rockwell family lives in Littleton, except for their daughter, “Sarah,” who has intense mental health needs and has lived in a residential treatment center for the past several years. The Rockwells approached Family Voices Colorado in 2009 with concerns that Medicaid wanted to send Sarah home, in spite of psychiatric assessments that acknowledged neither she nor her family would be safe if that happened.

Sarah’s parents had already tried to appeal the decision, but encountered one roadblock after another in getting the different public agencies and private companies involved to acknowledge the severity of Sarah’s condition or to take responsibility for continuing to fund her care. Sarah’s mom, Irene, was at her wit’s end as to what would happen if her daughter came home, but did not want to follow one caseworker’s suggestion that she relinquish her parental rights so that the Department of Child Protective Services would take over.

Bringing the right people to the table

Business meeting
Image courtesy of Ambro / FreeDigitalPhotos.net

Family Voices was able to help the family gather the appropriate institutional representatives at the table (Medicaid Managed Care Ombudsman, Department of Health Care Policy and Financing, Behavioral Healthcare, Inc., and the residential treatment center) for many meetings of evaluation and negotiation. Finally, the team secured the appropriate documentation from Sarah’s care providers and psychiatrist to convince the funding agencies of the medical necessity of continuing Sarah’s placement, without having to reevaluate the situation on a monthly basis.

Irene, who prides herself on her resourcefulness, has taken the lessons she learned from working with Family Voices to become an advocate for other families facing similar struggles with the health care system.

Support and empowerment

Dina Castro, Family to Family Coordinator
Dina Castro, Family to Family Coordinator (shown here at the 2011 Walk ‘n’ Roll), has worked with the Rockwells for three years

Family Voices helps to move parents beyond the isolation, grief and panic they often feel when learning their child has a disability or chronic condition, or when trying to navigate the various service systems, and puts those parents back in control of their lives and their children’s welfare. Through working with Family Voices, parents are supported and empowered, resulting in stronger families and an increased ability to advocate effectively on behalf of their children.

Families of children with special healthcare needs often access multiple private and public systems. Consequently, they experience the system limitations more quickly than those whose needs are not as numerous or recurrent. By building partnerships among professionals and these families, Family Voices promotes improved decision-making, better outcomes and higher quality healthcare for everyone the systems serves.

Colorado Gives Day is December 4, 2012
Support Family Voices on Colorado Gives Day

Please help Family Voices Colorado continue to support and empower families like the Rockwells by making a donation at GivingFirst.org/FamilyVoicesCODecember 4, 2012, is Colorado Gives Day, when the FirstBank Incentive Fund increases the value of every dollar contributed. You can also set up a recurring gift to provide ongoing support throughout the year. Together, we can make Colorado a better place for children with special health care needs.

Medicaid Buy-In for Children with Disabilities

On July 1, 2012, Colorado rolled out a new Medicaid program for children with disabilities, created by The Colorado Health Care Affordability Act. Now families who make too much to qualify for Medicaid or Child Health Plan Plus (CHP+) can ‘buy in’ to Medicaid coverage for their child with a disability by paying a monthly premium based on their family’s income.

Colleen Roahrig, Family Voices Colorado Western Slope Coordinator, talks about the Medicaid Children's Buy-In
Colleen Roahrig, Western Slope Coordinator for Family Voices Colorado, talks about the Medicaid Children’s Buy-In on KREX TV, Grand Junction.

Learn how the Medicaid Buy-In for Children with Disabilities is making a difference for the Howards, who live in Grand Junction, in this story that aired on KREX TV. Or read about the Hogarth family, who live in Aurora, and how the Buy-In saved them from crippling out-of-pocket costs. [Update 12/17/12: Susan Hogarth and Family Voices staff member Suzette Elledge were interviewed by reporter Michael Booth in this Denver Post article.]

To find out whether your child may qualify, or for help with the application process, please call us today at 800-881-8272 or 303-733-3000, or email info@familyvoicesco.org.

What is the Children’s Medicaid Buy-In?

The Medicaid Buy-In Program for Children with Disabilities (Children’s Buy-In) is a program that allows eligible families to pay a monthly premium (no more than $120/month per family, even if multiple children qualify) to ‘buy in’ to Medicaid benefits.

Baby Hagen Howard, with his mom Beth
Hagen Howard of Grand Junction is one of the children with disabilities to benefit from the new Medicaid Buy-In Program (photo from KREX TV story)

Who is eligible for the Children’s Buy-In?

Families with a child or children under age 19 with a qualifying disability (based on Social Security criteria) and whose household income is no greater than 300% of Federal Poverty Level after a 33% income disregard is applied. For example, a family of 4 may qualify with a gross monthly income of up to $8,600.

The Children’s Buy-In may be an option for:

Families of children with disabilities who are over income or resources for other Medicaid programs or CHP+; children on a waitlist for a children’s waiver (other than the C-HCBS waiver; contact us to learn more about this); children who do not qualify for waiver services; children who do not have health insurance or who need coverage as a wrap-around to other insurance.

Learn More:

Read the full overview and Frequently Asked Questions from the Department of Health Care Policy and Financing (HCPF).

Visit HCPF’s page about the Children’s Buy-In for all the details.

Call or email us to learn more or make an appointment for application assistance:

Local: 303-733-3000
Toll-free: 800-881-8272
Email: info@familyvoicesco.org

To support Family Voices Colorado in our work of helping families of children with disabilities and other special health care needs access affordable, quality health care, please consider making a tax-deductible donation today.

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.

Making Colorado a better place for children and youth with special health care needs