Understanding Care Concerns: Guardianship, Power of Attorney and More with Katherine Lietz MSW, LSW
This episode kicks off with our pal, Kerri Allen discussing her experience with Power of Attorney and Guardianship and all the ins and outs of this large undertaking. You can read her blog 6 Things I Learned About Power of Attorney here (and y’all, you’ll wanna read it! Super in-depth and explanatory), although she does a beautiful job explaining it again at the top of this episode! We adore you, KA.
Kate steps in and explains her role at the UPenn FTD center – read more about her here – her role is SUPER important and, looking back – Maria and I would have loved someone like Kate on our team.
Click here to learn more about Katherine “Kate” Lietz MSW, LSW here.
We break into the episode with some definitions…
Guardianship: A legal arrangement that involves the court system. “Guardianship typically occurs when a person is no longer able to make decisions for themselves,” explains Kate. A guardian is appointed and becomes the incapacitated person's “decision maker,” over legal, medical and financial matters.
Hint: Not everyone has to endure guardianship. If there are advanced directives already in play – guardianship may not be needed. What are advanced directives? Great question… things like: durable power of attorney
Durable Power of Attorney: Legal decision maker. (similar to a guardian, but determined when the person still has capacity to make decisions).
Long Term Care: “The care that will see a person through the end of their life,” states Kate. (A perfect depiction!) This term often encompasses a variety of services designed to meet a person’s health or personal care needs when they can no longer perform everyday activities on their own, (think care facilities, memory care, Skilled nursing, in-home support).
Long Term Care Insurance: Kicks in when needed. Insurance that covers what Kate previously mentioned (care facilities, in home care, etc).
Kate mentions here – EVERYONE should have a power of attorney. Having this all lined up and already in place in every family is so important and takes out a lot of the “gray” area that causes confusion and stress. (We agree!). Make your wishes known in writing before you can’t.
“Families who have the tough conversations early and often tend to have an easier journey, than those that don’t,” Kate explains.
This is a tricky part of the family process after receiving a diagnosis of FTD, but the more we can take a proactive approach and get “all our ducks” in a row. Hindsight is 20/20 and man, oh man – what a difference that would have made.
Kate mentions the following should be the first step after receiving diagnosis: Meet with an elder law/estate attorney.
You can find one at this site National Academy of Elder Law Attorneys
Your local areas agency on aging
Medicare and Medicaid have entered the chat! There is a difference and Kate breaks it down beautifully.
Medicare: received when someone retires
Social Security Disability: should be applied for if someone becomes disabled before retirement age. An FTD diagnosis is a perfect example of a reason to apply for SSDI. After receiving SSDI for 2 years, Medicare is available (regardless of age).
Medicaid: Insurance through the state that’s provided when deemed eligible (when income and assists are below a certain threshold).
Kate is a beacon of knowledge and we are happy to pass on all this fruitful information via UPenn FTD center. Big shout out to the AFTD for adding to the conversation - It takes a village, you guys!
Guardianship or conservatorship (the name depends on your state) can be established by a court of law when a person:
is not able to manage their affairs or make their own decisions
has not executed a power of attorney, and is no longer mentally capable of doing so
may cause or experience serious harm if left on their own
A guardian is appointed by the court to be the person’s “decision maker” over legal, medical and financial affairs. This can be a family member or a professional, in some cases.
Guardianship may not be needed if there are existing advance directives or powers of attorney.
An elder law attorney or estate attorney (even for those under 65) is the best person to advise you on advance directives, powers of attorney, guardianship and consideration of health care and long-term care expenses. You can search for elder law attorneys in your area through the National Academy of Elder Law Attorneys
Social Security Disability (SSDI) or Supplemental Security Income (SSI) are resources for those diagnosed with FTD under 65. After receiving SSDI for two years, the person becomes eligible for Medicare. FTD is listed as a diagnosis in Social Security’s Compassionate Allowances List (CAL) allowing for expedited medical review of the application. Read AFTD’s blog post about applying for Social Security benefits for a person with FTD to learn more here.
Resources from AFTD
Learn more about advance directives in AFTD’s blog post: Advance Care Planning
AFTD’s Provider Letter can help professionals you encounter, including elder law attorneys, learn more about FTD and better understand your needs and experiences.
AFTD's HelpLine can offer guidance, information and resources to support you.
Longtermcare.gov has information to help you learn more about long term care options, Medicare and Medicaid.
You can find your local Area Agency on Aging here.
