Information of interest topeople with disabilities and other special needsand their families.

A recent study will help Easter Seals andMassMutual’s SpecialCareSM team of professionals reach out to individuals who arecurrent or future caregivers of their siblingswith special needs. The findings provide abetter understanding of the concerns thesesiblings have and the challenges they face.

MassMutual and Easter Seals Team Up for Siblings Disability Study

Sponsored by Massachusetts Mutual Life Insurance Company

(MassMutual), the Easter Seals Sibling Disability Study survey1

was conducted by Ipsos Public Affairs, a leading consumer

research company. To offer a comparison of views, two groups of

siblings were included in the survey – 351 adults who have a

sibling with special needs (we’ll call them Group SN) and 1,392

adults (Group XSN) who do not have a sibling with special needs.

This article explores some key findings.

Sibling relationshipsWhen asked how much they agreed that “my relationship with

my sibling enhances my life,” 80% of people in Group SN agreed,

compared to 61% in Group XSN. Further, 72% of Group SN who

have children of their own believe their children benefit by having

a relationship with their sibling, compared to 61% of Group XSN.

Generally, this can be attributed to how the experience tends to

help individuals look at life from a different perspective, and how

that helps them develop positive traits, such as compassion,

understanding, and patience.

“Having a sister with disabilities made me more tolerant and

understanding of others,” says James C. Traylor, CLU, ChFC who

has earned the Chartered Special Needs Consultant (ChSNC)2

designation and is a Special Care Planner with Financial Architects3

in Rochester, New York, a general agency of Massachusetts

Mutual Life Insurance Company (MassMutual). “For example,

most of us have seen a child throw a temper tantrum in public.

I experienced it with my own sister many times, so when I see

other children acting out, I can relate,

while others who view the same scene

might be critical. It’s made me able to

apply compassion and understanding to

other aspects of my life. I also believe

that people who have lived with a sibling

with special needs tend to find ways to

integrate that experience in their profes-

sional and philanthropic lives. I became

a financial professional with a focus on

helping families with special needs.”

As beneficial as the relationships can

be, they can also cause strain. 78% of

Group SN agreed that “sometimes my

relationship with my sibling puts a strain

on my family life,” compared to only

29% of Group XSN.

“Sometimes it’s the little things,”

explains Traylor, “the extra steps to get

ready to go somewhere, the stress of often

being late for events, the added responsi-

bilities put on siblings, or the things they

miss out on.”

Traylor adds, “My friends would be off

doing fun things without me because I

had to stay home to take care of Nathalie.

She has particular routines and habits a

stranger wouldn’t understand. It’s a big

deal to a kid to always be the babysitter,

and though I was resentful, I came to

understand it as I got older. We also didn’t

take vacations because breaking Nathalie’s

routine was too stressful for all of us. My

parents tried to balance that by installing

an in-ground pool, but I was still envious

of my friends who went on more adven-

turous vacations.”

Traylor explains that he was twelve

years older than Nathalie, so the logical

choice for his parents was to look to him

for help with Nathalie and other house-

hold chores. “I got attention as the

helper, and Nathalie because of her needs. I can imagine that for

siblings in similar situations this may add increased strain to

family dynamics. ”

So what can a family do to keep a better balance? Make an

effort to communicate more openly and more often. Take a

sincere interest in what’s happening in each other’s’ day. Find

activities family members can enjoy together.

“Nathalie loves to play Guitar Hero and Wii, and she’s drawn

the rest of us into playing it with her,” says Traylor. “And our

family communicates more through electronic media, including

Nathalie, who can’t write a letter, but loves to text.”

Unprepared for the responsibilityOf those who will be future caregivers, 83% are comfortable

with being the primary caregiver, with most (60%) feeling

emotionally prepared. But only 33% feel financial ready.

“I couldn’t agree more,” says Traylor. “I love my sister, and we

have a great relationship. Emotionally I think it would be fine.

But I also want to have my own life, a wife, kids. She’ll have to

be part of that, and I know it will be tough for all of us.”

He also understands why so many feel financially unprepared.

“Up until a few years ago, I was comfortable with my parents’

financial strategy for Nathalie’s future, but they divorced, and

money that was going into Nathalie’s trust fund is now allocated

to other expenses. Financial responsibility now falls more heavily

on my other sibling and me. We talk about what life will be like

without our parents, whether or not we’ll move closer to one

another, what our capacity is for earning more money, and how

we’ll share Natalie’s care and expenses.”

Improving the financial picture“It’s very difficult for parents to save

enough for their own retirement and for a

lifetime amount of care for a child with

disabilities,” says Traylor. That’s why it’s

important for caregivers to have a financial

strategy. Traylor suggests talking to parents

to find out what steps they’ve already

taken. “If nothing is in place, or you feel

the measures they’ve taken aren’t enough,

find out what more can be done,” he urges.

“Encourage your parents to meet with a

financial professional and attorney who

specialize in serving people with special

needs. If they won’t, meet with those

professionals on your own. Find out what

options your parents – and you yourself –

may have. You’ll feel more prepared for

your future caregiver role with a strategy

in place, and your diligence may entice

your parents to improve their strategy

as well.”

A properly drafted special needs trust

(SNT) is one strategy option. It can be

funded with an inheritance (or other gifts

of money) from parents or grandparents,

for example, or with money saved (prefer-

ably in something other than a retirement

account, which can have early withdrawal

penalties and tax consequences). It can

also be funded with proceeds from a life

insurance policy. For instance, you may

want to purchase a policy insuring your

mother’s or father’s life with the SNT

named as beneficiary, and pay the premi-

ums yourself.

Perception vs. realitySo often, we aren’t aware of the amount

of work a task will require until we’re

actually trying to accomplish it. The survey

reveals that it’s no different with the

perception of current caregivers compared

to future caregivers. Take a look at these

findings.

• 55% of future caregivers believe it

will be a full-time job, while 75% of

current caregivers believe that yes, it

is indeed a full-time job.

• 74% of current caregivers feel it’s

difficult to balance their own needs

with the needs of their sibling, com-

pared to 68% of future caregivers

who think it will be difficult.

• 67% of future caregivers believe they’ll

get support – emotional, physical, or

financial – when the time comes to be

a caregiver, but only 57% of current

caregivers feel they’re getting the

support they need.

“What I do think is that it will be case

specific,” says Traylor. “If a person named

to be a future caregiver isn’t involved

with care giving now, it will be so much

tougher for them when they take it on

later. Personally, I’d recommend they get

involved now. Know what the needs will

be in advance and look for opportunities

now that may help you later.”

Learn moreWant to know more about the survey?

It explores so much more. You can request

a copy of the findings by contacting

Easter Seals at www.easterseals.com .

1 Participants in the survey and their siblings were 18 yearsold or older. The survey has an estimated margin of errorof +/- 5.2 percentage points. Methodology Annotation #6

2 Chartered Special Needs Consultant (ChSNC®) – a profes-sional designation awarded to those individuals who’vecompleted 120 hours of academic classes in addition toholding either Chartered Life Underwriter (CLU),Chartered Financial Consultant (ChFC) or CertifiedFinancial Planner (CFP) designations and previously com-pleting the Special Care Planner certification program.The ChSNC designation was developed by The AmericanCollege in Bryn Mawr, Pennsylvania. The certification program and the professional designation evolved fromMassMutual’s SpecialCareSM Program.

3 www.financialarchitectsupstate.com

* The Special Care Planner receives advanced training and information in estate and tax planningconcepts, special needs trusts, governmentprograms, and the emotional dynamics of workingwith people with disabilities and other special needsand their families. The certificate program is offeredby The American College in Bryn Mawr, PA,exclusively for MassMutual financial professionals.State insurance departments recognize that theSpecial Care Planner certificate program providesessential information on the profession of specialcare by granting continuing education (CE) credits(varies by state).

A Special Care Planner through MassMutual’sSpecialCareSM program can assist parents in draftingLetters of Intent and can help make a difference in thequality of life for an individual with special needs,their caregiver and other family members. ThroughSpecialCare you will learn valuable financial strategies,identify financial strategy solutions, access vital information, and meet certified specialists who willwork with you and your professional advisors – yourbanker, accountant or financial planner, lawyer, socialworkers and health care providers – to review yourfinancial picture and offer options to fit the needs ofeach situation. For more details, visit MassMutual’swebsite at http://www.MassMutual.com/specialcare, or call 1-(800)-272-2216.

About MassMutualMassMutual Financial Group is the marketing namefor Massachusetts Mutual Life Insurance Company(MassMutual) and its affiliated companies and salesrepresentatives. Assets under management includeassets and certain external investment fundsmanaged by MassMutual's subsidiaries.

Founded in 1851, MassMutual is a mutually ownedfinancial protection, accumulation and income management company headquartered in Springfield,Mass. MassMutual’s major affiliates include:OppenheimerFunds, Inc.; Babson CapitalManagement LLC; Baring Asset ManagementLimited; Cornerstone Real Estate Advisers LLC; MMLInvestors Services, Inc., member FINRA and SiPC(www.finra.org and www.sipc.org), MassMutualInternational LLC and The MassMutual TrustCompany, FSB. MassMutual is on the Internet atwww.massmutual.com.

The information provided is not written or intendedas tax or legal advice and may not be relied on forpurposes of avoiding any Federal tax penalties.MassMutual, its employees and representatives arenot authorized to give tax or legal advice. Individualsare encouraged to seek advice from their own tax orlegal counsel. Individuals involved in the estateplanning process should work with an estateplanning team, including their own personal legalor tax counsel.

MassMutual has carried the Exceptional Parent (EP)Symbol of Excellence since receiving it in 2004 inrecognition of its commitment and service to peoplewith disabilities and other special needs and their families.

Massachusetts Mutual Life Insurance Company, Springfield, MA. www.massmutual.com. MassMutual Financial Group is a marketing name forMassachusetts Mutual Life Insurance Company (MassMutual) and its affiliated companies and sales representatives.

Reprinted with the expressed consent and approval of Exceptional Parent, a monthly magazine for families and professionals dealing with individuals with disabilities and special health care needs.Digital Subscription cost is $19.95 per year for 12 issues. Call (800) 372-7368. Offices at 416 Main Street, Johnstown, PA 15901 ©2010

SC 1574 0313CRN201502-168546