Why Lower TEFRA Parental Fees? A Caregiver Story

Kelly supports lower TEFRA parental fees. Kelly’s teenage daughter lives with a Fetal Alcohol Spectrum Disorder (FASD). They live in Scott County.

Kelly has private insurance as primary coverage and MA-TEFRA as secondary coverage. With good private insurance, she still needs MA-TEFRA to cover her daughter’s personal care assistance (PCA) costs, Children’s Therapeutic Services and Supports (CTSS) costs, in-home therapies, and more. Her daughter now also has a Developmental Disability waiver, so to Kelly, the parent fee is definitely worth it. The waiver pays for critical expenses such as medicine safes, pantry door lock, and other strategies for securing their home; an advocate to accompany Kelly to places like Individual Education Program (IEP) meetings; summer camp for youth with special needs; respite care in summer like YMCA day camp when full-time PCA services are not possible; PCA training; psychoeducation for family, friends, PCAs; equine therapy not otherwise covered by insurance; and higher PCA wages to attract people to the southwest metropolitan area.

The high TEFRA parental fees, however, have been extremely difficult for Kelly and her ex-husband. At one point, they both were employed, and the fee between them was more than $1,000 a month. It was still a net savings if they used every single service private insurance didn’t cover.

Due to the high fees, Kelly’s ex-husband took her to court to try to remove MA-TEFRA coverage for their child. He argued he could not afford the fee. The judge acknowledged the fee was sizeable and did not automatically rule in Kelly’s favor. Eventually, they settled out of court, but this experience shows how much of an impact those fees have even on employed, middle-class, professional parents.

Kelly recently became unemployed—laid off after 30 years on the job—and asked that her parent fee be reduced or eliminated. Requests like this are handled in the order received, and action in response to Kelly’s request was extremely slow. Meanwhile, she was billed monthly based on an income she did not have. She continued to pay the fees, trusting that she would receive an adjustment when human services got around to reviewing her case.

Complicating matters further, Kelly’s ex-husband received a large cash distribution from her retirement account in 2015. This was money she had to use to remain in the family home and keep things stable for the kids during her divorce. That money went to “buy him out” and helped him set up a new household for the children. Because it is reportable income and was on her ex’s tax forms, the state wants its share of this cash distribution also.

Although Kelly and her ex-husband do not live in poverty, the high fees are painful for them on top of all the other challenges with children. To this day, the financial trade-off is still not worth it for her ex-husband, who would still like to get the kids off MA. Kelly never gets a break, financially or otherwise, from pushing to make sure her kids have access to the services and supports they need.

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Copyright © 2018 Minnesota Organization on Fetal Alcohol Syndrome | Photos by Amy Zellmer, Custom Creations Photography.

This site is provided to families and professionals as an informative site on Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorder (FASD). It is not intended to replace professional medical, psychological, behavioral, legal, nutritional or educational counsel. Reference to any specific agency does not necessarily constitute or imply its endorsement, recommendation, or favoring by MOFAS.