Planning for the future can feel overwhelming, but it’s essential for families of individuals with Prader-Willi Syndrome (PWS). At the 2024 FPWR Conference, two experts shared actionable insights into estate planning and insurance benefits, empowering families to navigate these critical areas with confidence.
This session featured Mark Roth, an estate planning attorney, and Brian Kalasek, an insurance professional. They provided practical advice and tools tailored to the unique needs of PWS families.
Watch the video below to dive into insights from the 2024 FPWR Conference session. Short on time? Scroll down and explore specific topics (with timestamps) like preparing for emergencies with estate planning, maximizing insurance benefits, and setting up ABLE accounts.
The First 48 Hours: Estate Planning with Mark Roth
Timestamp: [0:01] Mark Roth began his session with a simple yet profound question: “What happens tomorrow if I don’t make it home from dinner?” Reflecting on his own family, he realized that without a plan, his daughter with PWS could face serious challenges, even with basic needs like meals. This prompted him to focus on estate planning that addresses not just long-term goals but also immediate needs in the first 48 hours of an emergency.
Essential Elements of an Estate Plan
Timestamp: [4:16] Roth outlined key components every estate plan should include:
-
Wills: Ensure assets are distributed according to your wishes.
-
Trusts: Family trusts and special needs trusts help protect long-term financial stability.
-
Durable Powers of Attorney: Allow someone to make healthcare or financial decisions if you’re incapacitated.
-
Guardianship: Provides court-ordered authority for decision-making on behalf of a child with special needs.
Special Needs Trusts: Preserving Benefits
Timestamp: [10:20] Special needs trusts are crucial for protecting government benefits like Supplemental Security Income (SSI). Roth explained the difference between:
-
First-Party Trusts: Created with the individual’s own assets but subject to payback provisions.
-
Third-Party Trusts: Funded by family members and not subject to payback provisions.
These tools help families maintain vital benefits while ensuring financial stability.
Actionable Steps for Emergencies
Timestamp: [15:41] Roth went beyond traditional estate planning, sharing practical tools for preparing for unexpected crises::
-
Temporary and Successor Guardian Nominations: Templates to name trusted individuals in case of emergencies.
-
Letters of Intent: Detailed instructions for caregivers about routines, medical needs, and important contacts.
-
Emergency ID Cards: Alerts first responders to guardianship arrangements and other critical details.
These steps, Roth emphasized, can provide much-needed clarity and stability during chaotic moments.
Timestamp: [26:25] Q&A with Mark Roth
Understanding and Utilizing Insurance Benefits with Brian Kalasek
Timestamp: [54:22] Switching focus, Brian Kalasek tackled another critical topic: navigating health insurance and other benefits. For families of children with PWS, understanding the complexities of insurance can be a game-changer in reducing financial stress.
Simplifying Health Insurance Basics
Timestamp: [59:16] Kalasek explained the main types of health insurance plans:
-
PPOs: Flexible plans that allow out-of-network care but tend to cost more.
-
HMOs: Require in-network care and referrals but are often more affordable.
-
High-Deductible Health Plans (HDHPs): Paired with Health Savings Accounts (HSAs), these plans offer tax advantages for medical expenses.
He also broke down essential terms like deductibles, co-insurance, and out-of-pocket maximums to help families better understand their policies.
Reducing Prescription Costs
Timestamp: [1:09:04] Kalasek recommended tools like GoodRx to compare drug prices and find discounts. He also stressed the importance of copay assistance programs, which can reduce costs for specialty medications like growth hormone therapy.
The Role of Medicaid
Timestamp: [1:13:07] For families who qualify, Medicaid can provide invaluable benefits, such as respite care, home modifications, and even reimbursement for employer-sponsored health insurance premiums through programs like the Health Insurance Premium Payment (HIPP) program. Kalasek encouraged families to explore these options to alleviate financial stress.
Beyond Health Insurance: Ancillary Benefits
Timestamp: [1:24:08] Kalasek also emphasized the value of benefits often overlooked but critical for long-term security:
-
Disability Insurance: Provides income replacement during illness or injury.
-
Life Insurance: Ensures financial security for dependents in the event of an unexpected loss.
These benefits, often available through employers, can be a cost-effective way to plan for the unexpected.
ABLE Accounts: A Flexible Financial Tool
Timestamp: [1:29:23] Kalasek wrapped up by discussing ABLE accounts, a valuable savings tool for individuals with disabilities. These accounts allow families to set aside funds for qualified expenses, including medical costs, education, and daily living needs—all with tax advantages. Kalasek recommended starting one early to maximize its benefits and flexibility.
Timestamp: [1:32:40] Q&A with Brian Kalasek
Planning for the future may seem daunting, but the insights shared by Mark Roth and Brian Kalasek provide families with the tools and knowledge to take actionable steps today. Learn more by watching the full session from the 2024 FPWR Conference.
