Coping with the care needs of our sick child and the financial needs of our family. Rick Lofgren, MBA, MSA, CFRE COTA President & CEO

Transcription

1 Coping with the care needs of our sick child and the financial needs of our family Rick Lofgren, MBA, MSA, CFRE COTA President & CEO

2 Welcome! Welcome to Orlando and the annual TFCA conference!

3 Our Mission TFCs - to provide accurate financial information to our patients and families in a compassionate and tactful way.

4 Patient Benefit As you talk to parents/spouses, remember the top 3 stressors for families are: 1. Death of a family member 2. Terminal illness 3. Chronic illness, pain or incapacitation

5 Communicating with Moms vs. Dads: Moms (or grandmothers) Want to talk about how the transplant will impact the entire family Want to know the big picture How will this impact their child specifically? How will this impact their other children (and/or their parents)? What happens later to the funds raised and impact for their future? Are much more empathetic (no surprise) and emotional.

6 Communicating with Moms vs. Dads: Dads (or grandfathers) Want to express their concern that they have somehow failed Want to solve the problem & identify a resolution that may be impossible without assistance Transplant is impossible for anyone except the wealthy to afford without help Focus on how friends will ask to help, and this allows them to do so Look to the future, not the current position Ask: Would you do this for your neighbor, cousin or friend?

7 Examples? How have you seen the difference between moms and dads, or between biological parents and grandparents?

8 Patient/Family Assessment: (Faith, social, school and other networks) Needs assessment What does your facility require? Deposit Evidence of insurance/medicare/medicaid PLUS personal funds Donor costs Living near center Prescription coverage

9 Financial Planning for Transplant: The A s, B s & C s for TFC s If the liver is $300,000, what is the patients personal financial responsibility?

10 Patient/Family Assessment: Faith, social, school and other networks Needs assessment Determining Basic Financial Need outside your center Distance to the transplant center/clinic from home Is there private insurance or governmental coverage; families costs vary greatly Household expenses (not lost wages) Travel for clinics, labs, follow-up oil and lube Loss of income to care for patient Caring for dependents: children and parents ( sandwich generation ) Medications; co-pays and deductibles Living donors or NMDP search Miscellaneous transplant-related expenses

11 Patient/Family Assessment: Faith, social, school and other networks Needs assessment Determining Basic Financial Need outside your center

12 Financial Planning for Transplant: The A s, B s & C s for TFC s Loss of income for a sustained period of time: pre-, during and posttransplant One, and sometimes both, parents lose income and possibly benefits FMLA means you keep your job but no pay; only for larger businesses One parent often is unable to return to work full-time; sometimes not at all Normal budgeting for post-transplant income and expenses can be challenging with higher costs and lower income

13 Financial Planning for Transplant: The A s, B s & C s for TFC s Maintaining two households for most families Home and apartment Double utilities, other living expenses Child care, pet care and adult-care issues Transportations for dialysis, clinic visits, check-ups and frequent well-care visits Medications: $10,000-$12,000; co-pays are a tremendous financial burden ACA: more high deductible plans mean more out-of-pocket costs for many Murphey s Law: those miscellaneous expenses that come when things are down

14 Advantages to Having a Support Network Friends to share the story when a parent cannot Emotional support Volunteer support Financial support

15 Advantages to Having a Support Network: Fundraising is one source of family support Funds assist with many transplant-related expenses including: Temporary Housing & Parking Transportation Costs Meals and Incidentals Household Expenses

16 Advantages to Having a Support Network: Friend-raising Resource: Contact their social network Determine how to communicate Social Media Text Phone calls Post a blog or Facebook message to thank and encourage supporters Register as a regular user for updates from support group and fundraising websites!

17 Advantages to Having a Support Network: Patient/Family Assessment (Faith, social, school and other networks) Needs assessment Network of friends, family and community groups

18 GoFundMe is the largest online fundraising resource but it has multiple drawbacks -- since ~2010, online websites have revolutionized the process allowing communities to turn their social network into life-saving dollars! Website Resources

19 Questions? Thank you for your all you do as part of your transplant families support team! Please reach out to us to help your patients have a second chance at a healthy life!

20 Rick Lofgren, MBA, MSA, CFRE COTA President & CEO 2501 West COTA Drive Bloomington, Indiana , ext. 210 COTA.org Facebook.com/RickLofgren Twitter.com/RickLofgren