The handwriting was on the wall.
As my unstable daughter approached her 18th birthday, I knew. She wouldn’t be able to advocate for herself – much less make appropriate decisions regarding her mental health. With a history of alcohol exposure in utero and early childhood trauma – followed by a two-year molestation ordeal in foster care, she’d been diagnosed with FASD and PTSD.
Reactive Attachment Disorder and Bipolar Disorder (with recurrent depressive episodes) followed. At 16, her psychiatrist added Borderline Personality Traits. The full disorder, which is usually reserved for adults, would come several years later.
Like many children with past trauma, my daughter had an average IQ but severe, ongoing symptoms that hampered maturity. With her fast approaching adulthood, my options to “rescue her” were next to none.
On top of that, my daughter was her own worst enemy. She made one poor choice after another – choices that put her in danger. And once she turned 18, I wouldn’t be able to force her to do anything. Even my most carefully chosen words in the months leading up to her birthday were greeted with skepticism, followed by defiance and more socially inappropriate behaviors. Yet I felt compelled to act. Doing nothing and watching a tragedy unfold would haunt me forever.
She made one poor choice after another – choices that put her in danger.
That gut-wrenching dilemma led me to seeking guardianship of my soon-to-be adult daughter.
“The first thing a parent should know is that guardianship over a child with special needs isn’t a ‘one size fits all’ proposition,” says Indianapolis attorney Anastasia Demos Mills. “Each child is unique and each child has specific gifts and limitations and, ideally, the guardianship proceedings and resulting order should reflect that.”
To secure guardianship over my daughter, a local probate judge would need to determine that she couldn’t manage her affairs. Then through a highly structured process, the judge would weigh the evidence presented – and if so moved – would name me her legal guardian. For young adults with a history of trauma, the scenario is a slap in the face. They desperately want to cross the threshold into “the land that mom and dad no longer rule.” They want control of their daily lives. My daughter was no different.
Unfortunately, my attorney never mentioned the potential fall-out from me being my daughter’s guardian. In fact, she never pointed out the fact that a legal document would specifically name her “an incapacitated adult.”
“All children deserve dignity and compassion as their family moves through the process of obtaining guardianship,” adds Demos Mills. “I encourage parents to enter into these tender conversations, particularly in the case of a child who has the capacity to understand some of the implications of a guardianship proceeding.”
According with Demos Mills, a well-seasoned guardianship attorney should work with parents and a child’s medical provider(s) to provide evidence to the guardianship court about the family’s specific situation. Once this evidence is presented, the judge can “customize” a guardianship order which becomes the legal document detailing terms and conditions.
“Guardianship over the person” – the most common form for young adults without financial resources – allows decisions regarding health care, education and housing. “Guardianship over the estate” adds the authority to manage finances. It is considered when significant assets like a trust fund come into play.
The benefits of guardianship are many, as Demos Mills clearly outlines from her years of experience.
- The most obvious benefit is clear legal authority for guardian parents to deal with third parties on behalf of their adult children. By showing proof of guardianship to school administrators, government agencies, medical providers and financial institutions, they are legally entitled to receive protected information and make decisions. In other words, doors may open more quickly.
- A guardianship order can help to protect vulnerable young adults from unscrupulous people who seek to exploit them. It can prove that the person under guardianship doesn’t have the authority to sign leases, buy cars or apply for credit cards with third parties.
- Proof of guardianship can be presented to law enforcement and may help to diffuse an encounter with the police. While guardianship isn’t a “get out of jail free” card, it may act as a shield in some minor offenses, such as shoplifting – but not serious criminal misconduct.
- Having a guardianship in place provides a process to have a judge approve major decisions, not otherwise noted in the guardianship order.
- A guardianship order may provide potential access to continued special education services, vocational training services, day programs, living arrangements and financial assistance.
The benefits of guardianship are many.
With guardianship papers in hand, I wasn’t shut out of IEP meetings at school before my daughter graduated. I continued to communicate with her doctor. I arranged appointments for birth control. And I eventually applied for Social Security Income on her behalf – since maintaining a job proved impossible with her up-and-down moods. Her application was approved – in spite of an average intelligence, in spite of her ability to secure employment in the past. In other words, the guardianship order – issued in a court of law – gave credibility to the social security claim. No doubt, the words “an incapacitated adult” had a strong perception for more people than my daughter.
On the flipside, attorney and filing fees for a guardianship can run upwards of $2000. Low-cost legal services may be available, but family members should verify that the attorney is skilled in guardianship and has credibility with local judges. An “unknown” face may raise additional and uncomfortable questions about the legitimacy of the guardianship request – which may trigger unwelcome behaviors in the adult child. If a parent is named as guardian over the estate, the periodic accounting requirements can be time-consuming.
In some cases – especially young adults with invisible disabilities, the court might appoint a “guardian ad litem” to be present at the hearing. This person will ask questions and advocate on behalf of the young adult, because the family’s guardianship attorney is only authorized to advise the proposed guardian – not the young adult child. Some guardian ad litems may also make themselves available outside of court to answer questions and offer reassurance – without the presence of the parent. If well-trained and empathetic, the guardian ad litem can be an incredible useful resource. But there are no guarantees.
Not surprisingly, the biggest challenge for me throughout the months-long process was my daughter’s highly emotional reaction, “I don’t need a guardian. I don’t want one.”
When reviewing the guardianship documents with her court-appointed guardian ad litem, she took the standard legal jargon personally, as if I had intentionally chosen the words to mock her. Then the guardianship ad litem over-stepped the clear boundaries that my daughter desperately needed. At that point all I could do was watch. As perception trumped fact, triangulation resulted with both my daughter and the guardian ad litem calling me an overbearing parent.
During the final court proceedings, the guardian ad litem went one step further. Although the woman admitted to knowing little about early trauma and the accompanying mental health concerns, she accused me of controlling my daughter and forcing a guardianship that she didn’t need. Her harsh statements should never have made in front of my child.
Of course, none of the perceptions were close to the truth. Even though the judge ultimately approved the guardianship, the damage had been done. Much of the trust that I had painstakingly built with my daughter disappeared. For the next two years, the strain on our relationship was obvious as every conversation erupted into a heated, one-sided argument in which my daughter referenced the guardianship hearing. She never forgot the guardian ad litem’s less-than-congenial words about me.
Four years later when I started guardianship proceedings for one of my sons, a different attorney took an entirely different approach. Unlike my previous legal counsel, she was well-versed in explaining the process to all concerned parties. Furthermore, she understood the inherent level of anxiety for the young adult child. Instead of my son feeling like the victim and becoming increasingly frustrated, he felt safe. His needs would never go unattended. He understood that we were a team. Since my son was calm and agreeable during court proceedings, the guardian ad litem said nothing.
With both my daughter and son, their guardianships proved to be less confining than they expected. I was ruining their lives after all! Yet both had to see that outcome for themselves.
The other major surprise has been the ignorance of guardianship in the community. Outside of schools, I ran into roadblocks at hospitals, among doctors, with insurance providers and at banks – even after presenting the notarized guardianship papers.
“We don’t have your daughter’s permission to disclose her information to you” was a common refrain. During an unexpected hospital stay, I finally gained access to her doctor after repeatedly asking for a week to speak with the person in charge. Her response was priceless.
“I wish you’d come forward sooner. You had vital information. We could’ve avoided numerous tests and treated your daughter on the first or second day.”
To hopefully alleviate a similar situation, Demos Mills recommends that parents keep a hard copy of their guardianship order in their glove box or purse. They can also save a digital copy in their smartphone. Proof of guardianship should also be on file with any health care providers – thus allowing a guardian’s power to authorize (or refuse) a certain course of treatment as well as to receive medical updates on behalf of the protected person.
While guardians are legally entitled to access protected health care information, guardians often take on the additional roles of advocates and educators when working with care providers on behalf of their young adult child. Meanwhile, care providers typically confer directly and privately with patients about treatment choices. When a third party becomes involved in the “care conversation,” the dynamic changes significantly and can result in an understandable communication challenge, particularly if the protected person is resistant to a treatment plan. A little diplomacy on the part of the guardian can go a long ways.
Although not always possible or practicable, Demos Mills suggest that parents set up “care conferences with health care providers or facility social workers outside of emergent medical events to discuss their respective rights, responsibilities and care preferences. That way, if and when treatment is required, the provider and the guardian have a pre-established relationship and can act in a more proactive manner on behalf of the protected person, particularly in the case of an unforeseen mental health crisis.”
At the end of the day, a court-ordered guardianship isn’t going to magically ensure compliance from any person or entity. It might trigger symptoms of past trauma. It might hinder parent-child communication. Nevertheless, the order can certainly be a useful tool to ensure safety. For that reason alone, I have never regretted my decision to be the guardian of my daughter and one of my sons.
The order can certainly be a useful tool to ensure safety.
And I’m happy to report that my daughter and I recently returned to court. We mutually decided to rescind her guardianship after eight long years. The Judge agreed. At the age of 26, she was ready to stand on her own – while admitting to the Judge that she truly needed the additional support early in her adult life, while acknowledging in public for the first time that I had always acted in her best interest.
Priceless words that I will never forget!
At the same time, the guardianship had been pushed her out of a comfort zone. In turn, she developed the maturity that will sustain a mutually-rewarding father-daughter bond.
Now and for years to come. DCP
Craig Peterson publishes EACH Child every Tuesday. To subscribe, open this link and “Like” the page. EACH Child is Special: Working Smarter Not Harder to Raise Every ONE
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