Charles Massimo, founder of CJM Wealth Management,
launched a specialist offering within his practice around three years
ago catering for families impacted by autism. He has since found that
there is latent demand for such specialised services.

Massimo, who has two sons on the autism spectrum, says the practice is “something near and dear to my heart.”

It is also something that affects many, and – as with
other disabilities or long-term illnesses - has serious financial
consequences. A Harvard study in 2006 estimated it could cost about $3.2
million to take care of an autistic person over his or her lifetime – a
figure which has presumably risen since.

Data from the Center for Disease Control and Prevention indicate
that around one in 88 children have been identified with autism spectrum
disorder by the age of 8. Meanwhile, Mark Roitmayr, president of Autism
Speaks, estimated in a CDC press briefing this year that around $137
billion annually is spent due to autism in the US. Massimo says
that breaking this down to an individual family level is an indicator of
the challenge families face.

Autism also impacts the family practically. “I know, day-to-day, what
a 24/7 job it is,” says Massimo. “Many of these children will be
dependent on their parents for their entire lives.”

Discussing families’ reactions when confronted with such challenges and costs, Massimo says: “They feel incredibly overwhelmed.”

His clients are wealthy families, but he says “even wealthy families
feel overwhelmed by cost” because they have so many other goals –
education of descendants, retirement planning, philanthropic giving,
lifestyle – that they’re also hoping to meet. However, “wealthy [people]
are used to this kind of planning, so they’re more aware…but it’s an
educational process.”

Essentially, caring for a person with autism reinforces the need to
approach wealth in “buckets,” earmarking capital for certain goals and
expenses, and ensuring liquidity meets costs.

Who to work with

The needs of a family impacted by autism are complex, and extend
beyond the more obvious financial requirements. For example, Massimo
says some children on the spectrum may have more of a tendency toward
violent behaviour, or to wandering off, for example, posing risks to the
family if they were to cause harm to anyone. These sources of risk can
be managed in advance with insurance, for example, then of course there
is the planning needed to ensure they are cared for after their parents
die.

Because of this, it’s important to consider all angles of financial
planning – insurance, estate planning, cash flow management – with this
in mind, and to work with specialists in these industries.

“It’s the same thing in every walk of life – it’s the same thing with
a lawyer, you absolutely need a very specialised attorney used to
dealing with disabilities – you need to seek these out, that’s what we
bring to the table,” he says. “You have to really do your homework.”

One challenge for the business is that, although there may be latent
demand, “a lot of families out there don’t know about these services,”
which is why he not only works on referrals but also holds seminars to
raise awareness about these challenges and the way financial advisors
can help.

However, he stresses that this sort of business offering is not for
all advisors. “If financial advisors don’t understand and aren’t
sympathetic” to the situation, they are likely to miss the less obvious
risks to the family, he says. It also takes certain relationship skills,
and the most rewarding conversations can only take place once the
family has let its guard down.  

 “Unfortunately we’re in an industry that’s been mired in corruption”
so to work with any family “you have to be able to establish efficacy
but also compassion” first, he says.

Of course, this kind of practice could be expanded to families caring
for people with a long-term illness or other disabilities, but Massimo
wants to stay highly specialised for the time-being.

He operates from Long Island, and manages assets on behalf of
families, for which he’s paid a fee directly. This is based on assets
under management, rather than on a per-service basis. “That’s a decision
I made, because I didn’t want them to feel they couldn’t pick up the
phone,” he says.

As documented in these pages, some advisors are moving towards fees
on a time or service-provided basis to match them more directly with
costs, and certainly providing this kind of personalisation is time
consuming.

For this fee, Massimo says he tries “to be able to bring as many
resources as possible” to the relationship – so a network of suitable
insurers and lawyers for instance.

The future

When asked whether this kind of service might become more common, he
says: “Absolutely, I think you’re going to see more and more…but as a
wealth manager, you can’t just say ‘I’m going into this’…you need to
be dedicated [to it].”

His advice to families is “you have to take a leap of faith” – he
thinks one of the most common emotions is to feel debilitated when
confronted with difficult financial and emotional issues, but he says
the worst thing is to “do nothing”.

Financial services providers are starting to wake up to these kinds
of needs. Mass Mutual, for example, offers an outreach programme for
individuals caring for a person with a disability or other special
needs.

For this, the firm has designated “Special Care Planners,” which have
received advanced training and information in estate and tax planning
concepts, special needs trusts, government programmes, and the emotional
dynamics of working with people with disabilities and other special
needs and their families. The certificate programme was offered by The
American College in Bryn Mawr, PA, exclusively for the firm’s financial
professionals.

On the education and certification front, Massimo says he's "started
to see certain things pop up” at individual firms. Eventually though, he
thinks some kind of industry-wide accreditation signifying that a
professional is trained in the wealth management needs of families
affected by disabilities such as autism could well be on the cards. “I’m
sure we’ll see the industry going that way,” he says.