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Navigating Your Insurance Coverage with PWS [2020 CONFERENCE VIDEO]

Navigating health insurance benefits can be daunting. Brian Kalasek, PWS dad and VP of Special Risk for an insurance company, breaks it down in this video.

Brian Kalasek is both a father of a young son with PWS and VP of Special Risk for Mutual of Omaha insurance company. In this 76-minute presentation, he shares successful strategies for maximizing health insurance benefits and estate planning — informed by both his profession and his experience as a PWS parent. It includes Q&A with participants in the 2020 FPWR Virtual Conference.

Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.



Presentation Summary With Timestamps

0:30 Introduction by Sarah Peden. Brian Kalasek is:

  • VP of Special Risk for Mutual of Omaha insurance company
  • PWS dad to a four-year-old
  • His wife Samantha is a stay-at-home mom

6:50 Brian Kalasek presents:

  • Introduces his family and how he views PWS from a father’s perspective.
  • He and Samantha have four kids: Easton (9), Ben (6), Paxton (4) and Sophia (2).
  • They have held FPWR One Small Step fundraiser events in the past in their local community in Omaha.
  • He also shares some of their experience when he learned about his son Paxton’s PWS diagnosis at birth. 
  • While it has been challenging for the Kalasek family, Paxton has been thriving, showing improvements with therapy.
  • Brian and Samantha want to do as much as possible to give Paxton the best opportunities for his future and his life: to live independently, to have a fulfilling life, and to be happy.

20:49 The Basics of Health Insurance

  • It’s a complex product.
  • Health insurance comes from different sources: the biggest one is Employment-based insurance. Other sources are Medicaid, Medicare, individual private insurance, and military.
  • For the 54% of people whose health insurance is employment-based, there aren’t too many options, except maybe a higher-deductible plan and a lower-deductible plan.
  • There are two main types of health insurance: health maintenance organization or HMO, and preferred provider organization or PPO

23:00 HMO

  • This type of health insurance plan limits coverage to care from doctors who work for or contract with the HMO.
  • Generally won’t cover out-of-network care except in an emergency.
  • An HMO may require you to live or work in its service area to be eligible for coverage.

24:35 PPO

  • This type of plan contracts with medical providers, such as hospitals and doctors, to create a network of participating providers.
  • The network is often made up from healthcare providers that live out of your geographic area, even in other states.
  • You would pay around 60% of their normal rates.

26:37 A high-deductible health plan with a health savings account

  • This type of health insurance plan is meant to control the cost of insurance with high deductibles.
  • With typically lower premiums, this type of health insurance has high deductibles so it’s ideal for families that can pay those deductibles out of pocket.
  • The IRS defines a high-deductible health plan as a health plan with a deductible of at least $1,400 per individual or $2,800 for a family.
  • Having a high-deductible health plan qualifies you to have a health savings account.
  • The money you put into a health savings account is contributed pre-tax, and if you use it to pay for qualified medical expenses, there’s no tax on your withdrawals, either. If you don’t use the money in a given year, the funds will roll over for future availability, and you own that account even if you change employers.

30:55 Health Insurance Vocabulary

  • Deductible: The amount you owe for health care services before your health insurance or plan begins to pay.
  • Coinsurance: The percentage of allowed charges for covered services that you are required to pay after you have fulfilled the deductible. The percentages may vary, but it can assign your insurance to pay 80% and you pay 20%, or it may pay 85% and you pay 15%.
  • Out-of-Pocket Maximum: The most you pay during a policy period (usually a year) before your health insurance or play begins to pay 100% of the allowed amount.
  • Copayment: A fixed amount you pay for a covered health care service, usually when you receive the service. The amount can vary by the type of covered health care service, e.g. emergency room visits.

34:13 Prescription Drugs covered by Health Insurance

  • A prescribed drug can be reimbursed by your insurer if it’s part of their formulary.
  • There are usually four buckets or categories of drugs that can be covered by your health insurance plan.
  • For PWS patients, growth hormone can fall into the most expensive category if it’s within their formulary, and it will usually be in the form of a copayment. If the company that manufactures that drug is part of the co-pay assistance programs, they can make that payment for you.
  • A useful cost comparison tool is, where you can check your surrounding area for any medicine your family may need and the most affordable options.

39:30 State Medicaid

  • Rules and regulations and laws surrounding state Medicaid vary by state.
  • If you’re on Medicaid, going out-of-state to see a specialist or a specific doctor can be expensive because you’ll be charged full price for the consultation.
  • In Nebraska, the Aged and Disabled Waiver program is available for families regardless of their income. There are different ones available for different purposes, and the eligibility varies by state.
  • At, you can find more information on your state’s Medicaid programs you can apply for if your child or teenager has PWS.

42:00 529A Able Accounts

  • These accounts are similar to the 529A Savings Accounts, where you can start saving for college for your child.
  • They allow individuals with disabilities and their families a tax-advantaged way to save money for disability-related expenses of the account’s designated beneficiary.
  • Earnings in an ABLE account grow tax-deferred, and withdrawals are tax-free when used for qualified disability-related expenses.
  • You can open an ABLE account using any state’s plan.

45:25 Estate Planning Considerations

  • This is a really complex issue that needs assistance rom an attorney well versed in special needs planning.
  • They need to have a thorough understanding of public benefits planning, experience in drafting special needs trusts, and a knowledge of general estate planning, including wills, trusts, etc.
  • A trust is an agreement by which one person (the trustee) holds property for the benefit of another (beneficiary).
  • Essential purpose is to improve the quality of life of an individual without disqualifying him or her from eligibility for public benefits.
  • Assets in trust are not counted as a resource.
  • Assets supplement rather than supplant government benefits.
  • The Overall Planning Goal in a “special needs” trust is to achieve as much independence as possible for the beneficiary. Ideally, beneficiaries become wage-earners who no longer need public benefits of the SNT.

48:00 Q&AFPWR Enewsletter

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.