My husband was a fierce and tireless advocate for people with disabilities. A former middle-
school journalism and English teacher, his life’s trajectory changed when daughter Hannah was
born in 1976 with Down Syndrome. He began employment with Easter Seals Colorado, and
later became the executive director at the ARC of Jefferson County, Colorado. Among other
things, he promoted a “least restrictive environment” model for people with developmental
disabilities where the individual, with advice from loved ones and advocates, could make their
own life decisions. This model carried over to our daughter, adopted from China at age 7, when
we realized that she, too, had significant developmental disabilities.
Before she turned 18, we had healthcare and financial powers of attorney documents drafted
as a safety net. We avoided full guardianship out of respect for the “least restrictive
environment” model. This worked well, until behavioral health issues began to impair her
ability to remain safe. She became impulsive, defiant, and belligerent. She demonstrated to us
in clear fashion that she was not capable of making safe decisions. Her mental health and her
cognitive and intellectual disabilities were on a collision course that would take her down a very
dangerous path if left to her own devices.
Now in her twenties, my husband and I mulled over the next steps. Tragically, he died
unexpectedly in October 2021. Our world turned upside down, and for our fragile daughter it
was full blown chaos. Through the grief and aftermath of an untimely death, the surviving
children and I thought it was time to seek full guardianship for her and we all felt that dad
would agree. I made the call to our family attorney.
I learned that guardianship is not granted based on fears of what may happen. It must be
demonstrated that she is an incapacitated adult. This following excerpt was taken from the
sccourts.org website:
In South Carolina, an incapacitated person is someone who is impaired due to mental
illness, developmental disability, physical illness or disability, advanced age, chronic use
of drugs or alcohol, or other causes. Just because an individual makes bad decisions or
has a disability does not necessarily mean that he or she is an incapacitated person. See
S.C. Code Ann. § 62-5-101 at http://scstatehouse.gov/code/t62c005.php.
It goes on further to differentiate between an incapacitated person and one with poor
judgement:
An incapacitated person is unable to make responsible decisions about his or her well-
being. A person with poor judgment has the ability to make responsible decisions but
chooses not to do so. Sometimes it may be difficult to understand the reasons for the
poor decisions, which is why the Probate Court relies on the opinions of medical
examiners.
Based on these definitions, I am currently seeking guardianship for her now. I started the
process not long after my husband’s passing, only to table it when our daughter’s mental health
appeared to improve. This was short lived, and the process of seeking guardianship is in active
stages at this time. Letters are being sent by the court to her siblings (to assure the court that
they are knowledgeable, and in case anyone wants to contest the petition) as we prepare for
medical and psychological examinations mandated by the court. She is safe in a “host home”
about an hour from me. The following are questions I had to answer for the guardianship
petition… do I believe she should retain the legal rights for any of the following:
1. Make end-of-life decisions
2. Participate in social and religious activities
3. Vote
4. Consent to or refuse educational services
5. Contract for marriage
6. File for divorce
7. Travel independently
8. Be employed without the consent of a guardian
9. Operate a vehicle
Each element was carefully considered as to what the minimum restrictions would be in order to keep
her safe yet give her the autonomy to make some major decisions in her life. As the retired one in our
family, my husband was at the helm of our daughter’s life-planning activities while I maintained my full-
time job. Since his passing, I’ve been on a crash course of educating myself about programs, systems,
resources and social security. As your loved one with a disability is growing toward adulthood, think
about how to approach this process for them, and for you. It is not a “one size fits all” solution, and not
all those with disabilities will need full guardianship. There are pages of state-specific guardianship
information on the web. Do your homework. Speak to others who have walked through the process and
come to a decision that best fits the needs of your loved one. The process of life planning and
guardianship should be easily and readily available to all impacted families.
Written and submitted by Paula Lowther.
Paula is a nurse practitioner with more than 30 years experience in the field, including camp nursing for adults and children with disabilities She is currently expanding her resume to include content writing for the healthcare industry. She has 2 young adult daughters, and is the bonus mom for her husband, Todd’s 3 adult children. She resides in Fort Mill with her menagerie of dogs, cats and birds.
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