How to ensure ongoing care for child with severe mental illness

It’s not uncommon for parents to wonder how their children will fare after they’re gone. For parents of young adults with severe mental illness, it’s a much larger and more complicated question.

Many of my clients are in this situation. Because severe mental illness, which may include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), eating disorder, panic disorder, post traumatic stress (PTSD) or personality disorder, frequently doesn’t manifest itself until a person is in their 20s, parents are often at least in their 50s, and sometimes considerably older.

And they worry: How will my child be cared for? Where will they live? How much money will they have, and how will they access it?

Caring for a mentally ill loved one involves a journey of discovery — it’s like you’re venturing into unexplored territory. And like all good explorers, you have to leave a map for those who will follow in your footsteps.

Here are some of the tips and practices I encourage my clients to use. It can be complicated and frustrating, so do familiarize yourself with resources, such as community-based mental health agencies or private consultants.

Arrange for benefits

If benefits will be necessary — whether that’s Medicaid, Medicare, SSI (Supplemental Security Income) or SSDI (Social Security Disability Insurance) — get these in place as soon as you can. In the current climate of federal funding cuts and staff reductions, it can take a long time to put these benefits into effect.

If your child cannot handle their assets and will need the help of a sibling or trustee to oversee finances, having these benefits prearranged will mean they will spend less of their own money out of pocket.

Have an estate plan

I can’t emphasize this too strongly: It’s not enough to have only a will. Parents of children with severe mental illness need to think about housing, ongoing care, trustees and income for their child’s future. The money you spend on an estate plan now will save money and heartache down the road.

This means hiring an estate attorney, but look for one who specializes in Special Needs Trust Accounts and ABLE (Achieving a Better Life Experience) Accounts. Both of these accounts allow you to set aside assets for the child without jeopardizing their eligibility for federal benefits.

Identify a lineage of trustees

In your estate plan, you will likely start out as the trustee, but you also need successors if you die or are no longer able to function in the role.

If it’s going to be siblings, they need to be educated to take on this role. The last thing you want to do is surprise them with it after you die.

I find that it’s often beneficial to engage a professional trust officer. As an objective third party, they will evaluate the child’s situation, pay monthly bills and determine how much income their client needs on a weekly or monthly basis. Funds can be deposited to a debit card for additional expenses, such as personal care and transportation.

That way, siblings won’t be subjected to constant phone calls from their brother or sister — and if they do call, the siblings can refer them to the trust officer.

Keep really good notes

On this journey of discovery, keep a journal to record the details of your child’s care. This will be the road map for others to follow. They will know what roads you’ve been down and which led to positive results or dead ends.

It doesn’t matter if your notes are electronic or handwritten, but make sure siblings and trustees have access to them. Examples of details to include:

● What medications have been tried, which were successful and which had to be discontinued because they caused side effects or were ineffective.

● What therapeutic interventions have been tried, what was the result and who needs to make sure dosages are administered.

● Dates of hospitalizations, names of facilities and whether your child was compliant or resistant to care. Were they discharged unmedicated, or was there a court order mandating medication?

● Names of psychiatrists and therapists your loved one has seen, along with whether it was a good relationship or not, and whether they met your loved one’s needs.

If you’re living this reality, it’s never too late to start compiling the information. You may not have every detail, and it’s a lot of work, but do the best you can.

Ensuring care for a child with severe mental illness can feel like a full-time job, and sometimes it is. Putting these things in place now will mean peace of mind later.

• Bonnie Lane, M.S., is principal consultant with Family Support Services in Northbrook, specializing in supporting families whose loved ones suffer from severe mental illness or substance addiction. Daily Herald readers can contact her at (847) 651-1554 or bonnielane@thefamilysupportservices.com.