A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts published in October, 2012

Here’s an article about an investment firm based out of Long Island that specializes in financial planning for families of autistic kids.  You need some decent bucks to qualify, but if you do, it’s worth considering.

 

Financial Planning for Autism

By Christiana Cefalu

Financial advisors come in all shapes, sizes, and specialties, whether it’s the planning associated with divorce, generational transfer, or building a business. Charles Massimo, CEO and president of Long Island-based CJM Wealth Management, has a different specialty. He advises families with autistic children.

Such families carry an extra-heavy financial burden. Autism Speaks, a research and advocacy organization, estimates one in 110 children in the U.S. falls on the autism spectrum, a multitude of disorders with symptoms ranging from minor difficulties in social interaction to an inability to speak at all.

The organization recently released research that totaled the lifetime cost of care for individuals with autism in the U.S at $2.3 million.

Massimo is the father of twelve-year-old triplets, two of whom are autistic. Providing for his kids’ happiness and well-being to the best of his ability, he’s encountered many unexpected out-of-pocket expenses associated with autism. He says his own family currently spends upwards of $50,000 a year on autism-related items like speech therapy, uncovered medical expenses, and nutritional supplements.

There’s no telling if these costs will eventually grow or shrink, since it’s difficult to predict if and when an autistic child may ultimately live independently. In short, autism can add many more burdens and complexities to the already daunting challenges of figuring out conventional family wealth planning needs.

Another critical yet overlooked reality, Massimo says, is that caring for an autistic family member can be a full time job for at least one parent. “One spouse usually can’t work, so it’s a lost opportunity for more income,” he says. Which is why, two years ago, Massimo decided to bring his personal experience in raising autistic children to his wealth management firm, previously best-known for advising small business owners. He has, in short, a personal interest in advising other families in the same predicament.

While CJM’s clients typically have $1 million or more in investible assets, “we try to keep our threshold at $750,000 investible assets,” he says. So though Massimo says “I would never turn my back on anyone,” families do sometimes fall below the threshold when there are so many associated medical expenses, and, in such cases, “I would always provide guidance and steer them in the right direction.”

Of the 150 families that CJM advises, Massimo said about 10 have an autistic family member. For those families, CJM supplements its team of financial advisors with a clinical team led by a case manager who has experience with working with autism cases, either as an educator or social worker. They help advise and link families to resources like government agencies that provide Medicaid waivers and specialists who help facilitate the life plans of adults with disabilities, so they can live as independently and productively as possible. Many of these public services are given based on need, not level of income.

How much does Massimo’s specialist wealth management service cost? CJM charges all clients an annual fee of 1% of assets for the first $1 million. The fee slides to a lower percentage as assets move upwards of $1 million. CJM does not charge extra for autism-related services, but the team of clinical experts brought in charge clients their own separate fees based on the scope of the work. “The idea is to be a one-stop shop,” Massimo says.

Talk to Massimo and it rapidly becomes clear he is big on his clients being properly insured. “We don’t know when we won’t be here any longer to care for our families. So the first thing is to have life insurance,” he says. CJM recommends, as a rule of thumb, that a family provider with autistic children figure on three times the coverage he or she would otherwise need.

According to its website, CJM is also paid commissions directly by insurance companies, so we ran Massimo’s high coverage recommendation for autistic caregivers by Bill Werfelman, a spokesman for New York Life Insurance. Werfelman said that though the coverage figure seems high, “it could be about right, if you have a five-year-old child with a normal life expectancy” and who won’t ever be able to generate his or her own income.

Other immediate to-dos for parents of autistic children: setting up special needs trusts, guardians, and an estate plan. The second set of tasks, says Massimo, is “getting a handle on goals and current expenses for children.”

The clinical team drafts up what CJM calls an Individualized Life Plan to address the financial hurdles at each stage of the autistic child’s life. For example, at age 5, families may need to consider the costs of their child’s specialized schooling. At 18, housing and skills for independent living may be their chief concern.

CJM helps divide goals into different “buckets,” short term, mid term, and long term, instead of trying to press all financial objectives into one overarching target. “Sure your goal is retirement,” Massimo says, “but let’s take a step back. How are you paying for all your child’s issues today and how does that impact your future retirement? Where will that child live? How will you support and fund that? You have to deal first with today, then work your way forward.” That’s different to CJM’s majority of clients “who look 20 years ahead and work their way back.”

In other words, the family living with a child with autism – or, for that matter, any disease that is a heavy drain on savings – has to develop a special kind of strategic thinking that first meets the financial needs on its doorstep before it puts money aside for the feet-up years.

 

 

I once had a neighbor show up unexpectedly to our front door.  As I opened lock after lock, he asked “Geez Kev, I feel like this is something out of Wuthering Heights!”  Probably true, it does seem like we’re keeping our house under lock and key.  And just like the Bronte book, it’s not to keep strangers from coming in, but rather our children from running out.   Every night, we secure the property putting up locks on the inside of our doors.  I’m sure we’re in violation of most fire laws, but what are you going to do?  Wake up at 6am and find your 12 year old son has gone wondering off to god knows where?  The rules of society are meant for neurotypicals and as parents of autistic kids, we have to come up rules that work for the safety of our children.

Most of the respondents came from 1,098 of Interactive Autism Network’s most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.

Over all, 49 percent of families who participated said a child with autism had tried to wander from home, school or another safe place at least once after age 4; the peak age for wandering was 5. Some parents said their child wandered off several times a week or even several times a day.

“This is the first study to quantify the scope of the problem, and it was much larger than we thought,” Ms. Singer said.

 

 

Turning 21

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No, it’s not about my boys, who are 12 years old, but here’s an article from the NY Times on a mom’s reaction to her son turning 21.  It’s a bit wistful, the writer hints at what might/should have been, but at the end, she embraces what her life has become, and life goes on.

http://parenting.blogs.nytimes.com/2012/10/05/21-autistic-and-having-a-party/