Blocked by Privacy Laws
When your mentally ill child turns 18
By Jayne Jacova Feld

Ever since their son Eric had difficulties fitting in as a young child, Susan and Sam Dove worked with health professionals and educators alike to prepare him for the extra challenges adulthood and independent living would bring.

And by all indications, the diligent advocacy paid off. Academically gifted but socially limited, Eric went off to college ready to take on the world.

But when he needed his parents’ guidance more than ever – the then 18-year-old became depressed, anxious and suicidal after dropping out of college in the first semester – the Doves discovered that the easy partnerships they had formed with doctors and therapists in his childhood were no longer possible. From the moment Eric consented to hospitalization, he was on his own, locked in a ward for a week with no ability to consult the two people who best understood him and his issues.

“Once he gave consent for treatment, suddenly he needed to make decisions he wasn’t capable of making or even understanding on many different levels,” recalls Susan, a mother of four from Hainesport. “No one would share information with us. We were viewed as part of the problem and not the solution.”

What had changed was the simple passage of time. As difficult as it is to care for a mentally ill child, it is exponentially harder when that child turns 18. Laws that previously gave parents control over their child’s treatment no longer applied, replaced by new rules that protect an adult’s right to freedom and privacy. Parents no longer have legal grounds to force their children to take their medications or go to therapy. And even in situations such as the Doves’, when the child is willing and wanting of parental guidance, the laws can work to block their participation.

“Adults, even if they have mental illnesses, have the right to make decisions that appear terrible from another’s perspective,” explains Maxine Vogt, a family support specialist with Twin Oaks Community Services in Cherry Hill.

In some cases, a parent can go through the court system to seek full or limited guardianships over adult children if it can be proven the adult is a danger to themselves or others. Some are hopeful that the newly funded Gregory’s Law, named after an Evesham Township 11-year-old who was murdered by a schizophrenic man 10 years ago, will give the court system more power to compel some of the neediest mental health patients to seek treatment. In the wake of the Sandy Hook elementary school shootings, some New Jersey lawmakers have proposed expanding on these new programs.

Yet for most family members of mentally ill people, legal remedies are unavailable. Family members often use what little leverage they still have – food and shelter – to force their adult child to get help or medication. They work with counselors to figure out ways to cope with the situation and to build better relations with their adult child.

In her practice, Vogt counsels several relatives of young adults who are mentally ill, refuse treatment and shun involvement from relatives. She often must help these concerned family members understand and accept their limitations under the law.

“For parents, it’s very difficult to try to keep their adult children safe and to watch them make poor decisions,” says Vogt, program director of Twin Oak’s Intensive Family Support Services. “But if a child is not going to consent to you being involved after age 18, sometimes the only thing you can do is to work on building a better relationship with him. There are no magic answers. Sometimes it takes a couple of years and lots of heartache before a young adult can admit to having a problem and let parents get involved.”

For Belmar resident Ashley Johnson, her 27-year-old son Jack’s anger and attention issues date back to toddlerhood. There are times when she’s hopeful his life is moving in a better direction, but then there are always setbacks. Jack’s moods can swing between disarmingly charming to violently irritable. He’s had persistent trouble in school and keeping jobs. His outbursts have gotten him arrested several times and strained relations with family members, including Johnson’s second husband.

Throughout it all, Johnson has worked hard to be educated and involved. She fought to get him disability benefits, helped him obtain an apartment lease and, in the past, held the position of court-appointed trustee responsible for overseeing his money. (She recently relinquished the role on the suggestion of his counselor, who advised that he was able to handle his own financial affairs.)

Having finally been diagnosed with bipolar disorder, a condition in which people go back and forth between periods of an extreme high and a severe depression, Jack has been working with a psychologist experimenting with mood-stabilizing medications as well as receiving counseling.
For a time, things were on an upswing. After obtaining his GED, Jack has been taking college courses to become a personal trainer and works out assiduously. In recent days, she says, she was encouraged when a Christian music concert revived his interest in religion.

But with recent violent mood swings and his newly bulked physique, Johnson suspects he may be taking performance-enhancing drugs that could interfere with his psychiatric medications.
When she confronted Jack about her suspicions, he claimed the psychologist said it was okay to mix steroids with his medications, but Johnson has grave doubts. Without the ability to talk to his health professionals, there’s no one who will listen or take seriously her concerns.

“At this point, I know I have to put it in God’s hands and maybe let him hit rock bottom,” Johnson says. “But it’s very scary. With him mixing steroids with psychiatric medications, I don’t even know what I’m dealing with.

“If you want to know why crazy things happen in the world, it’s because no one will listen to people who may know how to prevent it,” she adds. “I don’t want to believe anything bad is in my son, but I’m nervous about it.”


Counseling Relatives of the Mentally Disabled

Among the issues blocking well-meaning family members from having more influence is that mental illness is not an intellectual disability, and most patients can present themselves in a rational manner. But at the same time, they may not have the ability to recognize they are mentally ill.

For many, the first solid signs of the illness may not come until someone is 18 or 19 years old, says Twin Oaks’ Vogt. Many are in denial that there’s actually a problem, chalking up symptoms to bad luck or circumstance. Some might get involved with drugs, self-medicating to feel better.
“It’s such a difficult concept for a young person to understand,” she says. “Getting them to see they have a problem and into treatment can be very, very tough.”

If parent and child are on good terms, the child can sign a disclosure form giving permission for the therapist to share information.

If an adult child does not consent to allow parental involvement, it is often still possible for loved ones to communicate with the grown child’s therapists, Vogt adds. Although the counselor is not allowed to share with family members what’s going on, most are open to listening to a parent’s concerns.

Just as importantly, Vogt says, family members should seek help to understand the condition, what the adult child is experiencing and for help coping with how the illness affects family dynamics.
“A lot of times a counselor’s role is to help family members accept what is happening and sometimes to help them get out of the way,” Vogt says. “We do lose a couple of them. But I’ve also watched, over time, kids start making right decisions and turn their lives around.”


Estate Planning and Guardianships

If relatives can prove an adult child is at risk of harming himself or others, or unable to handle their affairs, they can seek legal remedies such as a guardianship proceeding or a protective arrangement to take over both financial and medical decisions. There’s also the possibility of obtaining a limited guardianship to control either the assets and/or health decisions of a disabled or special-needs adult child. However, these legal actions can be costly, time consuming and difficult to attain, especially in situations when the adult child does not appear in imminent danger, says Ken Ross, a lawyer with Comegno Law Group in Moorestown.

“In cases in which an adult child is obviously legally incompetent, the court will normally grant a guardianship application if it is unopposed and uncontested,” says Ross. “The problem is when a child does not satisfy the legal standards, but may need some assistance with governing their affairs. The law doesn’t really address borderline cases.”

It’s sometimes easier to obtain a limited guardianship over the adult child’s property. This can be particularly helpful for families of an autistic adult child who may be able to make his own medical decisions, but who has a generous spirit and is easily influenced by other people. In this situation, the concern is the autistic adult’s inability to understand the ramifications of giving away his money, Ross explains.

“They can make their own decisions about medical treatment and how they wish to live, but may lack the legal capacity to manage their assets,” he says. “This is one way to maintain some control and supervision of a disabled and special-needs adult child.”

A cheaper and easier alternative to a guardianship application and protective arrangements is through the use of a power of attorney, which can provide a parent the legal authority to make decisions for the disabled or special-needs adult child. While this is much cheaper and quicker to obtain than a guardianship or protective arrangement, it can be revoked at the discretion of the individual who executed it, Ross says. While an adult child may initially be agreeable to execute a power of attorney, the relationship could become rocky at a later period, leading to revocation.



Gregory’s Law

While it is hard to compel an adult who is not under a guardianship arrangement to seek treatment and take medications, some are hopeful the newly funded Gregory’s Law will create more outpatient options for people in most need of treatment.
Named after Evesham Township resident Gregory Katsnelson, who was 11 when he was murdered by a paranoid schizophrenic who had just killed his mother over a pack of cigarettes, the New Jersey legislation in May earmarked $2 million toward court-ordered, involuntary outpatient care for severely mentally ill people.

The legislation is modeled after New York State’s Kendra’s Law, and advocates hope the measure will reduce dangerous behavior, violence, incarceration, homelessness and suicide while saving money and improving the quality of life for those living with serious mental illness. Courts will be able to order very seriously mentally ill patients who have a history of violence or incarceration to accept treatment.

However, New Jersey’s funding is paltry compared to the $200 million New York has spent on its programs since 1999. New Jersey has earmarked $8 million for full implementation of the program. The funding includes $1.7 million to five behavioral health providers, including the Lester A. Drenk Behavioral Health Center in Burlington County. Early estimates indicate the programs would affect only 400 high-risk patients out of 400,000 mental health patients statewide, according to recent press accounts.

On the heels of the Sandy Hook tragedy, some New Jersey lawmakers have proposed more action to address the connections between mental illness and violence. Late last year, N.J. State Senator Raymond Lesniak (D-Union) called for a commission to study violence in the state, urging that violence be treated as a public health crisis so federal funds could then be used to ease the crisis. Lesniak also recommended expanding the use of involuntary out-treatment commitments and mental health courts.


A Journey to Recovery

Even in situations when an adult child may welcome parental involvement, the law complicates matters. As Susan Dove recalls, she never considered her eager-to-please and academically gifted son would need such intensive interventions. And when things were spiraling out of control, she and her husband were too overwhelmed to go to a lawyer to discuss attempting to gain more control.

Dropping out of college was devastating for Eric, who had wanted so badly to be on his own in a new chapter in his life. He became anxious, depressed and belligerent, she says. On three separate occasions, he required hospitalization. Although the Doves recognized the stays were necessary, they also knew their son would not be able to make informed decisions about his treatment during his weeks of isolation.

Back home, living with him became overwhelming. It was as if he was going through the teenage angst he never experienced in his early teens, Susan says. He would stay up all night, sleep all day and refuse to go to work or school.

The situation improved after Susan and Sam told him he would have to move out if he did not respect the house rules. Whether the prospect of leaving home or medications improved the situation is uncertain. But Eric, at 23, is now thriving in community college and has taken on a volunteer job. He recognizes he does better with structure and keeps his days busy, she says.
Susan and her husband also worked with an estate lawyer to take on legal power of attorney over Eric. If there is ever a time when he would require hospitalization again, they now have the legal right to be involved with decision-making.

In hindsight, Susan admits, she was likely warned to take legal steps before Eric’s 18th birthday, but it didn’t sink in.

“When you have a special-needs kid, you try to look at the positive side of life, because if you start focusing on the negative, it’s just overwhelming,” says Susan.

“Although we knew he had limitations, all we saw were the wonderful things he was. We were so hopeful for his future. We wanted to believe it was going to be hard, but everything was going to be okay. We could not possibly have imagined what was about to happen.”

All names, except for the professional experts, have been changed for this story.

February 2013
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