Category Archives: News & Events

Family Voices. …keeping families at the center of children’s health care.

Affordable Care Act (ACA):

What Families Can Do to Avoid “Surprise” Medical Bills?

Most families are familiar with managed care and understand that they have better health care coverage if they stay within their plan’s network. However, even when families go to network hospitals, they are sometimes hit with surprise medical bills.


How Does This Happen?

Even if a hospital is in a family’s plan network, not all of the providers who provide services at the hospital may be in the network. It is important that parents know if individual doctors are also participating in the plan. This can be important to know for routine visits to a children’s hospital as well as for in-patient or emergency care.


In-Patient Care

Parents may have been diligent in finding both a hospital and also a provider who works there in their plan’s network. However, if their child needs surgery or other care, it is possible that the anesthesiologist, for example, may not be participating in their plan. Then the family receives an “out-of-network” bill.


Emergency Care

The situation is even more difficult during an emergency. Families may have to go to the nearest hospital or perhaps get admitted or transferred to a hospital that may be out-of-network.


“Because regulators rely heavily on complaints as an indicator of potential problems with a health plan’s network, it is imperative that consumers are aware of the ability to file complaints with the DOI and the process for doing so.”1

What Can Families Do?

  • Use in-network hospitals.
  • For medical appointments, check that the providers at the hospital are also in-network.
  • If using Medicaid as secondary payor, get an out-of-state authorization. NOTE: Even non-participating providers can bill Medicaid out-of-network as secondary to private insurance.
  • File a complaint, see

Families need to be vigilant about using in-network providers to ensure that their insurance will cover medical services. Plans should make information on network providers “transparent”, or disclose estimated costs out-of-network, so families don’t get unexpected medical bills. Some states have proposed protections, including for self-funded/self-insured plans. For more information on what families and advocates can do, see Resources below.



Ø Balance Billing: How Are States Protecting Consumers from Unexpected Charges?–how-are-states-protecting-consumers-from-unexpe.html?cid=xsh_rwjf_tw


Resources from Consumers Union Health Care Value Hub:

ØWebinar Recording from Consumers Union Health Care Value Hub: Addressing Surprise Medical Bills: New Research and State Approaches

ØSurprise Medical Bills: Grid of State Legislative Solutions

ØInsurance Complaint Tool:


This tip sheet is based on an ACA blog authored by Lauren Agoratus, M.A. Lauren is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the southern coordinator in her the New Jersey Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at More of Lauren’s tips about the ACA can be found on the website of the Family Voices National Center for Family/Professional Partnerships:



1 NAIC Consumer Representatives Report, Ensuring Consumers’ Access to Care: Network Adequacy State Insurance Survey Findings & Recommendations for Regulatory Reforms in a Changing Insurance Market (November 2014).

Fostering Inclusive Volunteering and Service Learning

Fostering Inclusive Volunteering and Service Learning is a guide for youth service professionals and others interested in facilitating youth engagement in volunteer activities. It describes how youth benefit from volunteering, different types of volunteer opportunities, and ways to assist youth to prepare for, access, and learn from their experiences. For all individuals to access and benefit from volunteering, the widespread practice of inclusion is key. An inclusive service environment actively fosters the engagement of all youth, including youth with disabilities, those involved in the foster care or juvenile justice systems, and other disconnected youth. The guide also provides relevant resources and tools that can enhance and foster successful outcomes.


Top Ten Summer Activities for Kids with Special Needs

Summer can be a challenging time for children with special needs and their parents. Many families face a decrease in school and therapeutic hours. This may leave parents with extra time to fill during the day. Parents are also on alert as children with behavioral or social skill challenges encounter bullies or controlling peers at parks. A trip to a recreational center may seem like an easy answer for some families, but not always the most accommodating for a child with physical disabilities or special needs.

As a result, created a list of ten summer activities to do with your child that don’t require weeks of planning, a small loan or traveling further than your backyard.

Top Ten Summer Activities for Kids with Special Needs

10 Tips for Ending the School Year

by Pat Howey, Advocate

  1. Visit the new school or classroom.

Will your child make a major transition next fall? Will your child be moving from preschool to kindergarten, from elementary to middle school, or from middle school to high school? Plan to take your child to visit the new school or classroom before the first day of school.

  1. Review your child’s IEP and progress.

Did your child make progress this school year? Did the school properly implement the IEP? Does the IEP adequately address your child’s needs? Do your child’s Goals prepare your child for further education, employment, and independent living?

  1. Ask for an IEP Team Meeting if necessary.

Did you answer “No” to any of the questions above? Ask for an IEP Team Meeting to resolve these concerns. Do not let another year go by with an inappropriate IEP.

  1. Prepare for the IEP Team Meeting.

Prepare a list of your child’s present levels of performance. The list includes you child’s strengths and the areas that are challenging. Look carefully at this list and you will better understand what your child needs. Add these needs to your list of present levels of performance. You can also add Goals, Related Services, Assistive Technology, and anything else that your list justifies as an educational need.

  1. Say “Thank You” to those who helped.

Did your child have a great school year? Was this success due to a wonderful teacher, a helpful classroom aide, or a thoughtful bus driver? Say “thank you” to those who helped your child succeed. Look at what made this a good year for your child. Add that information to the list of your child’s present levels of performance.

  1. Give your information list to the IEP Team before the meeting. 

Do not surprise other members of the IEP Team. At least one week before the meeting, give a copy of your list to each member of the IEP Team. Take extra copies to the meeting for anyone who forgets to bring their copy. Your IEP Team Meeting will go faster and smoother if everyone has your list ahead of time.

  1. Ask for a copy of any information that has been given to other members of the IEP Team.

You do not want to be surprised. Ask for copies of all information the IEP Team will discuss. You cannot be a full team member if you are left out of the loop. Ask for things like copies of teacher reports, evaluation reports, and group achievement testing.


  1. Ask the IEP Team to address Extended School Year (ESY).

ESY Ask the IEP Team to address ESY early in the second semester. If there is disagreement about whether your child needs an ESY, you will need enough time to resolve this with one of the due process procedures available.

  1. Find out what summer educational resources are available for your child.

An ESY is not the same as summer school. Summer School is usually a generic program that is not designed to meet your child’s individual needs. An ESY program is intended to meet the specific educational needs of your child as identified in his or her IEP. Make sure you know what services the school is offering!

  1. Determine whether your child needs a new evaluation.

Does your child need new evaluations? Are you unsure whether your child has made adequate progress? Achievement testing at the beginning and end of every year will give objective answers about your child’s progress. (See Chapter 8, Your Child’s Evaluation, in Wrightslaw: From Emotions to Advocacy, 2nd Edition).

Nebraska Public Schools, Technical Assistance Document on Extended School Year (ESY)

Nebraska Public Schools are committed to providing all children with disabilities a Free Appropriate Public Education. With that commitment in mind, this Technical Assistance (TA) document was developed to serve as a guide for parents and educators across the state to assist them in making decisions regarding the provisions for extended school year services.

NDE Extended School Year (ESY) Services Nebraska Department of Education

Omaha Gives!

PTI Nebraska is excited to announce that we will be participating in Omaha Gives on May 20, 2015. As Giving Tuesday reminds people to donate to their favorite charities, PTI would like you to mark your calendar for the metro area’s biggest day of giving. This will be our second time participating in Omaha Gives! and we are hoping for a record setting year for the 24-hour online giving event. We truly appreciate your continued support as we move forward with our mission to advocate for families of children with disabilities and special healthcare needs!