Creating Financial Independence for Grown Children with Autism

Source: Courtesy of Charles Massimo

One of the most important things for the mental health of parents of the disabled is knowing that their children will be cared for financially after they are gone. Financial planning isn’t glamorous, but it is necessary.

After my interview with Betty Lehman (Part 1), I wanted to talk with someone else involved with disability financial planning, and I found Charles Massimo, a wealth manager at Wealth Enhancement Group portfolio with more than half-a-billion dollars under management. He also has two sons with autism. These are the key takeaways from our interview.

The Cost

“The government is spending billions of dollars supporting people with autism,” Charles said. “So I just don’t know how long Medicaid is going to be able to support this.” Here are some numbers:

• The cost of caring for Americans with autism was $268 billion in 2015 and could rise to $461 billion by 2025.
• 78 percent of families touched by autism do not have a life plan.
• 75 percent of parents of children with autism worry about the financial support their children will receive after they can no longer support them.
• 47 percent worry that the financial drain they currently experience will financially impact their ability to raise other siblings.
• Only 12 percent believe their child would be able to manage some or all of their finances.

5 Steps for Creating Financial Independence for a Child With Autism

The remainder of this post is in Charles Massimo's words.

Every family is different, of course, but I think these are some of the most important steps you should take in disability planning:

1. Understand what state governmental opportunities there are that can help cover the care and financial burden of your child.
2. Create a Life Plan listing all the people in your child’s life—siblings, aunts, etc.—who can help if you can’t care for your child anymore. Have annual meetings where you all get together and talk about what the intention is for your son or daughter in the long term. For example, with my boys, I want them to work with a group in Long Island, US Autism Homes. They buy homes, renovate them, and then house young men and women on the spectrum, all job opportunities and a self-directing environment where my boys can grow. So, my Life Plan, for my boys, focuses on how we get them out to that group, what the timeline is, and how we work with the people at US Autism Homes to make my sons' Life Plan a reality. Everyone in my sons' Life Plan is aware of this and understands the steps involved.
3. Create a special needs trust. I worked with an attorney that specializes in special needs trusts. The trust is funded upon my death to fill in the gaps for what the state does not pay for in their living arrangement. You don’t have to fund a special needs trust while you are living. Most are funded through life insurance policies after death.
4. Create space for your child to evolve. We know that children with autism continually learn and grow. Even though my boys are 22, I hope that in 10 years they will be more independent than they are now. The goal is to always have them be more independent, but, in order to do that, you have to be realistic about their capabilities. Once you identify their strengths, then you can surround them with people who can continue to help them grow those strengths. You want to find organizations that can help your child grow and won’t just babysit.
5. Make sure you break up goals for each person in your family. For example, for me, I have the goal of my own retirement, and I have the goal of currently funding my daughter's grad school. I think as a family you need to break up these buckets of need and have different goals.

A Good Residential Program

My sons' school-based residential program, which ran from the ages of 16 to 21, helped them learn independence and be on their own, at least a little bit. At the same time, it provided me a little comfort and relief and gave me the opportunity to have my own life. I would visit them every week, take them home every weekend, and they could come and go as they pleased.

I think some people make choices based on their own emotional needs and not what might be better for their child. Residential programs might be hard for the parent, but sometimes they are the right choice for the child and the rest of the family.

There are also summer camps where your child can go and enjoy the outdoors like any other child. A summer camp will give you time to rejuvenate and take a step back. I mean, you have to find ways to step back, to find outlets, because what we’re doing is 24/7, and it’s never going to end until we’re not here. Unless you find a way to deal with the intensity, you will not emotionally survive.

What Will You Do When I’m Gone?

What will you do when I’m gone is the concern of every parent. You don’t know whether what there is today will be there in the future. But you do your best. Nothing is foolproof.

Somebody asked me recently, “Do you ever grieve having two boys with autism,” and I thought, “That’s crazy. I don't have time to grieve, I just got to do it.” That doesn't mean it was easy. We just did it and surrounded ourselves with people who were very supportive.

I see people in situations much harder than our own, and I feel for them. Sometimes they just can’t do it, and they put their kids in group homes or state-run institutions that are hardly ideal settings.

Even I didn’t make it through unscathed. I got divorced, which unfortunately happens to many couples in our situation.

But the question of what will you do when I’m gone is a very difficult question because so many families go through it in their own way. There’s not a day that goes by that I don’t think about this question.