As of 2019, an estimated 13.1 million adults had a serious mental illness, a categorization that includes schizophrenia, severe bipolar disorder, major depression and a few other disorders, which are often accompanied by substance abuse.

According to 2021 figures from the National Institute of Mental Health (NIMH), young adults ages 18 to 25 had the highest prevalence of serious mental illiness, also referred to as SMI – 11.4 percent – compared to older adults. As a result, parents play a large role in helping and supporting a child with serious mental illness. But as important as that role is, finding the right help and resources may seem an insurmountable challenge.

A 2016 study by the National Alliance for Caregiving found that 40 percent of caregivers struggled to find an accurate diagnosis for their loved one. Families reported that it took 11.8 years, on average, for their loved one to receive an accurate diagnosis.

Caregivers also reported many barriers to accessing health care services and long-term services and supports, including day programs, peer support, case managers and in-patient treatment, especially in rural areas.

Bonnie Lane, a therapeutic consultant who works with families in which someone has SMI, says her referrals typically go up around the holidays. “That’s when the child comes home from college and the parents see how dysregulated they are,” she says.

For 29 years, Northbrook-based Lane has worked in mental health and founded her consultancy, The Family Support Services, 17 years ago. She does not work with individuals who have mental illness or substance abuse, but with their families, “bubble-wrapping them in services,” as she puts it.

I was a critical care nurse for years before a personal experience with the medical care my father-in-law was receiving directed me toward patient advocacy. Likewise, Lane had a long career in mental health at community-based agencies, but went into consulting after a severe mental illness hit close to home.

“I fell into every pothole,” she says. “I made lots of mistakes that cost a lot of money and played musical therapists to find the right care.

I realized families without my background were struggling even more.”

When people ask her what she does, she responds with, “What do you need?” She helps families with discharge planning and finding the right level of care for their loved one. She assists them with getting benefits and finding permanent, supportive housing for those who can’t live on their own. “My clients trust me because they know I don’t just work it, I lived it,” she says.

Bonnie offers two main pieces of advice.

1. Don’t shield the other children from the issues you’re facing.

“Many parents mistakenly believe they’re protecting their other children,” she says. “Often, the siblings have no idea what’s going on, and after the parents are gone, they have a job they’ve never applied for.”

For example, siblings may not be familiar with the diagnosis, what medications have been effective or what therapeutic approaches have been tried. Siblings also have to know what’s been put in place in terms of housing, HIPAA releases, financial support and guardianships.

2. Practice tough love.

Bonnie says a child’s SMI can ruin parents, financially and emotionally. They often put others’ needs before their own, overlooking their own physical and emotional needs. This can lead to stress, anxiety, even depression.

But parents need to set expectations for their recovering child, she says.

“I’m strict,” she says. “In my opinion, nobody should leave a group home until they’re free of drugs, managing their own meds and participating in therapy. The final piece of recovery is 20 hours a week of structure, either employment or volunteering in the community.”

Lane is active in the community, advocating for legislation, appearing on podcasts and sitting on boards including the North and Northwest Suburban Task Force on Supportive Housing. She also runs a free support group twice a month for family members of those with severe mental illness.

We’ve come a long way since mental illness was something to be ashamed of and hidden away, but connecting the dots and putting together resources is a big challenge for those who are charting new territory. It’s good to know that those services are out there, and it’s even better knowing people like Bonnie and myself are there to help.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). Call (312) 788-2640 or email teri@northshorern.com.