Helping Families of Children with Special Needs to Understand Deductibles

One of the most confusing aspects for families of children with disabilities is the concept of deductibles and how that plays into cost-sharing.  Many parents will choose plans with lower deductibles, but this may mean there is also a level of fewer benefits, which could be particularly problematic for children with special health care needs.

What is a Deductible?

According to, the deductible is “[T]the amount you owe for covered health care services before your health insurance plan begins to pay.”  For example, if the plan’s deductible is $500, that’s how much you would have to pay before insurance kicks in.

Please note that there can be either individual or family deductibles under the plan.  (Each individual deductible generally will be lower than a family deductible for a similar plan.)  If you have an individual (“embedded”) deductible, each individual would have to reach that deductible before his or her healthcare costs would be covered.  If it’s a family (“aggregate”), deductible, that means that the deductible amount would have to be spent across all family members before their healthcare costs would be covered. It may be necessary to call an insurance plan to find out what type of deductible it has.

While it may sound better to have one family deductible this is NOT necessarily better when it is expected that one family member – such as a child with special health care needs – will have higher health care costs than other family members.  For example, if there is a family deductible of $2,000, then insurance coverage won’t apply for any family member until the family has spent that much out of pocket.  But if each family member has a $500 deductible, then insurance coverage will be applied for an individual family member once his or costs have reached the deductible. (See blog post from the Georgetown Center on Health Insurance Reform at.

What Families Need to Know

Deductibles are only part of total health costs.  Parents must also consider premiums (cost of buying the insurance policy) as well as out-of-pocket costs, including copays (see Resources.)  Families can also save money by using “in-network” providers, which means health care providers that participate with their plan and agree to accept the payment amount provided by the insurer.

Key things for parents of children with special needs need to keep in mind about deductibles are:

  • There is no deductible for preventive services.
  • Some plans offer other (non-preventive) services without a deductible, although any copayments will still apply.  Examples include  visits to a primary care provider and some specialists (e.g. mental health), and/or prescriptions.  To find out which services are covered without a deductible, go to, pick a plan, and click on “costs for medical care.”  An even more detailed list is available on the plan “Summary of Benefits and Coverage.”
  • When choosing a plan, families can look at services without a deductible along with premiums and other out-of-pocket costs.  During open enrollment, there is an “Out-of-Pocket Costs” tool on which estimates premiums, deductibles, and copays for the year.
  • Some families can save on out-of-pocket costs by selecting a “silver plan.”  More information is available at,
  • It is important to find out whether a plan has a family deductible or individual deductibles for each family member, and then figure out which is likely to be more advantageous for them.  (If the type of deductible is not indicated on, it will be necessary to call the insurance company to get that information.)

Understanding deductibles and other cost-savings is a key issue for families of children with special needs.  By examining how deductibles work, and not just picking the lowest- deductible plan, parents will get the best coverage for their child with special healthcare needs at the most affordable cost.

The Latest Data

An October 2015 analysis by the Kaiser Family Foundation (KFF) found that about 32.3 million people in the US were uninsured and that nearly half of those people, or over 15 million individuals, were either eligible for Medicaid or for financial assistance to help them purchase ACA coverage.  More than 25 percent of the uninsured were adults and children eligible for Medicaid/CHIP, while the remainder were eligible for premium assistance to purchase ACA coverage through the health insurance Marketplace.

Who is Affected?

One reason so many people remain uninsured is that that some states decided against expanding Medicaid coverage.  Nearly 10 percent of the uninsured, or over 3 million people, are in this “coverage gap.”  These people are unlikely to be able to afford to purchase private coverage, but under the ACA they are not eligible for subsidies; under the ACA as written, these people would have received Medicaid benefits, but the Supreme Court made the Medicaid expansion optional for states.

Ten percent of the uninsured (over 3 million) are children who are eligible for but not enrolled in Medicaid or the Children’s Health Insurance Program (CHIP).  Another 20 percent of the uninsured are Medicaid-eligible adults who are not enrolled.

The uninsured population also includes undocumented immigrants, who are not permitted to purchase insurance through an Exchange or receive subsidies.  Some other immigrants must wait five years to be eligible for Medicaid.  It is important to note that while some parents may not be eligible for Marketplace plans or Medicaid, in mixed immigration-status families the children could still be eligible for premium subsidies or Medicaid/CHIP.

Another group of uninsured individuals are those who are not eligible for premium subsidies because their incomes are too high or because they have an offer of insurance from their employer.

Healthcare implications

The Kaiser Family Foundation developed a primer on the uninsured, which discusses reasons for the lack of coverage and the health implications of not having insurance.  According to the primer, “The access barriers facing uninsured people mean they are less likely to receive preventive care, are more likely to be hospitalized for conditions that could have been prevented, and are more likely to die in the hospital than those with insurance.”

Although the number of uninsured significantly declined due to the ACA, many are still without insurance coverage.  There are many misconceptions as to who is uninsured.  The primer smashes some of these myths and notes that “A majority of the remaining uninsured population is in a family with at least one worker, and many uninsured workers continue to lack access to coverage through their job.”

What Can be Done?

“The gaps in our health insurance system affect people of all ages, races and ethnicities, and income levels…”

Source: KFF Primer on the Uninsured

According to the KFF primer, “Some of these [uninsured] children may be reached by covering their parents, as research has found that parent coverage in public programs is associated with higher enrollment of eligible children.”i   Although non-citizens are at higher risk of being uninsured, most of the uninsured are citizens.  Reaching out to mixed immigration-status families will also increase enrollment.  Many of the uninsured are concerned with cost, so awareness needs to be raised about tax credits for premiums and how to save on out-of-pocket costs (see Resources).  By sharing this information with our family, friends, and neighbors, we can help contribute to getting more people covered.

With continued efforts to educate and enroll the uninsured, forthcoming enrollment data will show progress in this area.  The primer concludes, “The ACA has provided coverage to millions of people in the United States in its first two years and has the potential to reach many more, ensuring that fewer individuals and families will face the health and financial consequences of not having health insurance.”

New Guidance Makes it Easier to Get Medical Records

The Department of Health and Human Services (HHS) has issued new guidance on HIPAA (the Health Insurance Portability and Accountability Act.)  This guidance will facilitate families of children with disabilities being able to obtain medical records, including waiving fees and sharing with third parties if requested.

What Has Changed

Families of children with special needs have had difficulties accessing and sharing their child’s medical records due to costs or being unable to easily communicate with other providers.  The National Partnership for Women and Families press release (see Resources) indicated that highlights of the guidance include:

  • encouraging providers to give free copies of medical records to families
  • posting charges for commonly asked medical records requests if applicable (e.g., for other providers)
  • electronic copies of records available to families if requested
  • “consumers can ask that their data be sent to ‘third parties,’ including consumer eHealth applications, researchers and family members”
  •  “Distinguishing an ‘individual right of access request’ from a ‘HIPAA authorization’”


What is the GetMyHealthData Campaign?

The GetMyHealthData campaign is led by the National Partnership and includes other consumer groups and health care experts including technology groups and former policymakers.  There is a website (see Resources) that helps families navigate the process for requesting medical records.  Various issues are addressed with resources (see endnotes for links) on what to do if consumers are told:

  1. HIPAA prevents the provider from sharing the information with the patienti
    Only the patient (or their authorized representative) has the right to access the records.  Thus, HIPAA does not prevent the provider from sharing information with the patient!
  2. Only paper copies are availableii
    If electronic copies are kept, patients have a right to access these as well.  See also #4 below.
  3. There are charges for consumer’s own recordsiii
    A provider can charge “reasonable costs” but there is no fee for searching or retrieving records.
  4. Records aren’t available electronicallyiv
    Even if the provider only keeps paper copies, providers are required to provide an electronic copy if it is “readily producible electronically” such as scanning.
  5. The patient portal, or the information they need, isn’t available on the portalv
    Providers may not require patients to use portals as not all families have Internet access.  Even if the portal is utilized, there may be information not kept on the portal and patients have a right to these records as well.
  6. They can’t get information for someone for whom they’re caringvi
    Parents can get records on minor children (in cases of divorce in accordance with custody.)  Once children are adults, families may use other mechanisms of supported decision-makingvii such as power of attorney, healthcare proxy, etc.  The only exceptions for children and adults are in cases of suspected abuse, neglect, or domestic violence.

There are additional tips on the website on what consumers can do if they’re told they need to pick up records in person, if they’ve sent a written request but received no response, or if there is missing or incorrect information in records.

This new HHS guidance will help clarify some of the confusion around HIPAA which creates unnecessary obstacles in getting health care records.  By being proactive, families of children with special health care needs can eliminate these barriers and more easily access medical records needed to provide the best care for their child

Our NCFPP Project


Family Voices was awarded a new three-year cooperative agreement from MCHB in March 2016 as the National Center for Family Professional Partnerships (NCFPP).  The new project period will be June 2016 through May 2019. The project will focus on supporting and developing family and youth leadership, particularly the leadership of racially and ethnically diverse families of CYSHCN. This agreement will promote the engagement of diverse families in meaningful ways in systems level activities and encourage the reduction of health disparities through family engagement.  The Statewide Parent Advocacy Network (SPAN), which serves as the Family-to-Family Health Information Centers (F2F) and Family Voices State Affiliate (FV SAO) in New Jersey, is partnering with Family Voices in this work, bringing their extensive expertise and experience in family and youth leadership training, especially for racially and ethnically diverse minority families.


Project Title: Family Voices National Center for Family Professional Partnerships (NCFPP)
Applicant Organization Name: Family Voices, Inc.
Address: 3701 San Mateo Blvd. NE, Suite 103, Albuquerque, NM 87110 (Mailing Address: P.O. Box 37188, Albuquerque, NM 87176)
Project Director Name: Nora Wells
Contact Phone Number: (781) 879-6209 Contact Fax Number: (505) 872-4780
Email Address: Web Site:

Project Summary: Family Voices, in collaboration with Statewide Parent Advocacy Network of New Jersey (SPAN), proposes to continue to operate the NCFPP with the goal to improve the health and quality of life of children and youth with special health care needs (CYSHCN).
Project Need: Family Voices NCFPP has a nationwide reach, encompassing the families of over 11 million potential children. To assess needs, Family Voices solicited information from targeted groups and found persistent health outcomes disparities based on race, ethnicity, socio-economic status, disability, geography, literacy, and sexual orientation. There are many service gaps among these groups, demonstrating a need to prioritize activities aimed at ensuring that the voices of families whose CYSHCN face the greatest disparities are heard in efforts aimed at improving services to, and outcomes for CYSHCN. Engaging diverse families as partners and leaders improves health outcomes and health systems by addressing discrepancies. Diverse family and youth leaders need development and support to become effective participants, and Title V and other MCH investments need development and support to meaningfully engage them, in CYSHCN systems efforts. The NCFPP will provide that development and support.

Proposed Services: Building on years of success and a wide network of partners, the proposed project will 1) provide assistance and support to the HRSA-funded network of F2Fs and other MCHB investments on topics of family engagement and cultural and linguistic competence, and 2) implement family and youth leadership development and training activities, specifically for racially and ethnically diverse minority families of CYSHCN and YSHCN. Services will be offered in every region of the country for family organizations and others with intensive peer follow up support. Thirty-three F2F/FVSAOs have expressed interest, and key national MCHB partners have pledged support. Family Voices has outlined extensive activities that include widespread information exchange/dissemination and targeted peer and family-professional opportunities to learn.

Population to be Served. The target communities to be served are nationwide; the proposed project will have representation in every state and Washington, D.C. Proposed populations to be served are F2F/SAOs in every state, other family organizations and leaders, Title V Programs, other MCHB investments, families with CYSHCN, and YSHCN, particularly those who are currently underserved, including racially and ethnically diverse minority families, low-income, those living in geographically isolated areas, those with low levels of health and policy literacy, and LGBTQ families and their CYSHCN or YSHCN.

Young Adult Health Care Social Media Toolkit

The Young Adult Health Care Social Media Toolkit was developed by Got Transition’s staff,  and members of the National Young Adult Transition Advisory Group to promote the new Health Care Transition Quiz, “Are You Ready to Transition to Adult Care?” The toolkitincorporates transition into adolescent and young adult well visits. Family Voices participates on the Got Transition Cabinet Executive Team, along with members of from the National Young Adult Advisory Group, Got Transition Staff, and others.

Special Announcement – F2F Feedback Survey

On February 21, 2018, the Health Resources and Services Administration (HRSA) published a Notice in the Federal Register requesting public comment on the new Family-to-Family Health Information Center (F2F) Feedback Surveys. As described in the Notice, HRSA has developed feedback surveys to determine the extent to which F2F HICs provide service to families of CYSHCN and health professionals who serve such families. This Notice was published pursuant to the requirements of the Paperwork Reduction Act of 1995, which requires agencies to estimate the paperwork burden associated with its collection of information.

HRSA specifically requests comments on:

(1) The necessity and utility of the proposed information collection for the proper performance of the agency’s functions

(2) The accuracy of the estimated burden of completing the survey

(3) Ways to enhance the quality, utility, and clarity of the information to be collected

(4) The use of automated collection techniques or other forms of information technology to minimize the information collection burden.

The Notice does not include the actual survey on which comments are being solicited. Directions for obtaining the survey and submitting comments can be found in the Notice. Family Voices will get a copy of the survey, distribute it to the F2Fs, and compile comments from F2Fs that wish to provide them. Anyone can submit individual comments as well. Comments are due April 23, 2018.

2016-2017 Family-to-Family Health Information Centers Data Brief

Data aggregated from reports submitted by all 51 F2Fs summarizing their work from June 1, 2016 through May 31, 2017 (FY2015) demonstrating their Direct Support, Estimated Overall Outreach, and Impact.

2017 Activity Highlights

This year the Family-to-Family Health Information Centers (F2Fs) and the Family Voices State Affiliate Organizations (SAOs) have been busy helping families with children and youth with special health care needs navigate the complex world of healthcare. This document features highlights from each of these family-led organizations around the country, and includes links to the 2016 State Data Reports for each of the F2Fs.


New Zika Care Connect Website

Zika Care Connect is dedicated to improving access to clinical services for families affected by Zika in 10 specific areas throughout the United States and its territories that are at high risk for Zika: California, Florida, Georgia, Maryland, New Jersey, New York, Texas, Virginia, Puerto Rico, and the US Virgin Islands. With the ultimate goal of lessening the effects of Zika on children and families, this important resource is now available to help pregnant women and families find the medical help they need. Zika Care Connect plans to expand to 5-10 additional jurisdictions in the near future.

What’s on the Zika Care Connect website?

The Zika Care Connect website contains information to help pregnant women and families find the appropriate healthcare professional and resources that can address their specific needs.

  • Healthcare Professional Network – a searchable database of healthcare specialists who provide care for pregnant women and infants affected by Zika
    • Healthcare specialties include maternal-fetal medicine, mental health, audiology, radiology, pediatric ophthalmology, pediatric neurology, developmental pediatrics, infectious disease, and endocrinology
  • HelpLine – a call line staffed from 9 a.m. to 5 p.m. ET by professionals who can help answer questions and provide referrals to healthcare professionals in the Zika Care Connect network
  • Downloadable Materials for Patients, Families, and Healthcare Professionals – fact sheets, charts, checklists and other documents about Zika
  • Frequently Asked Questions – answers to common questions about Zika and Zika Care Connect

Click here for more Zika resources compiled by NCFPP.

Building Partnership Skills

Family Voices National Center for Family/Professional Partnerships (NCFPP), in partnership with the Statewide Parent Advocacy Network (SPAN), is pleased to offer a new training series targeted at building partnership skills for systems-level collaboration of diverse family leaders and group leaders, such as Title V Directors and others.

Serving on Groups is a workshop specifically targeted to family-led organizations who build leadership of families. This interactive Train-the-Trainer session will provide skills to train families who currently serve or want to serve on a decision-making group. Participants will learn about group processes, useful tools for groups, understanding data, and skills to maximize participation of diverse family leaders in systems-level groups.

Leading by Convening is an interactive workshop that will improve your skills to: engage all team members, including diverse parents, on key issues; build support for shared work; address the adaptive, or relationship-based, aspects of change; and achieve your improvement goals! This workshop is particularly targeted to leaders of groups, such as Title V directors or their designees who run advisory groups, work groups, etc. In this hands-on workshop, you will be provided with tools that have been proven effective through use “on the ground” with diverse stakeholders including family leaders.

View the schedule

Family Voices Receives New PCORI Engagement Award for Family Wisdom Project

Family Voices is pleased to announce the receipt of a new award from the Patient-Centered Outcomes Research Institute (PCORI)to establish a national learning collaborative supporting expanded capacity for research partnerships among family organizations and underserved communities. Fourteen Family-to-Family organizations (F2F) and Family Voices state-affiliate organizations (SAO) will each work with a vulnerable or underserved priority community in their state to develop meaningful PCOR partnerships, while providing support for each other and learning best practices through bi-weekly videoconferences. Family Voices is partnering with the University of Nevada at Reno in this initiative.

Read more about the project at the Family Voices website.

NCFPP Awarded Funding to Support Families in the Territories

Family Voices is pleased to announce supplemental funds to expand opportunities for families in the US territories, particularly those exposed to or affected by the Zika virus. These funds will allow us to expand collaboration efforts with multiple family groups and individuals, Title V, MCHB programs and agencies, and other professional partners in the territories as well as key national MHCB partners. This funding opportunity represents an important step forward for families in the territories toward the goal of engaging families in their child’s health care and as partners in programs and policies.

Visit our Zika Resources page

Current Focus of NCFPP


Check out the NCFPP brochure for a description of our current work through a cooperative agreement awarded by the Maternal and Child Health Bureau for the 2016-2019 grant period.  This work will reduce health care disparities of families of CYSHCN by making health care more family-centered through the development and support of family and youth leadership, particularly of those from diverse backgrounds, at the systems or policy-making level.

Family-Centered Care Assessment

Mother with baby at the doctor's office

Did you know that family-centered care can improve patient and family outcomes, increase satisfaction, decrease health care costs, and lead to more effective use of health care resources?You can learn more about what makes health care family-centered by using the Family Voices Family-Centered Care Assessment tool, a 24-question tool to measure family centeredness of provider care based on ideas created by families themselves.

black_file.gif  Read More about the NCFPP