by Mary Anne Ehlert, CFP®
How to Find Peace of Mind
We are often asked, "What's so special about special needs planning
for families of individuals with disabilities?" More and more people
are becoming enlightened about the benefits of regular special needs
planning, but only 5% of the thousands of families we have helped
with special needs planning had a clue as to where to begin or what
What the family does know is how much they worry about the future
of their disabled child. They worry about what will happen to their
loved one if and when the parents are not around to care for them.
And what they discover is that the special needs planning process
gives them peace of mind and something they can rely upon for the
The mission of The Special Needs Network is to reach as many
families and organizations as possible to share the important information
about "10 Steps To Special Needs Planning For Families of Individuals
With Disabilities©" through complimentary presentations
and workshops. This information is critical knowledge for individuals,
parents, organizations and businesses.
10 Steps To Special Needs Planning For Families of Individuals
Special needs planning focuses not only upon issues of the head
but also issues of the heart. The first question parents ask is
always "How much should we save?" There is no easy answer to that
question. It depends upon many different things: What are your assets?
How much are your debts? How much do you spend? How long will you
live? How long will your child live? How much will care cost? How
much will be left? What if you spend it all? Who will manage what
The following are ten basic steps which help a family put lifelong
benefits in place for a loved one with disabilities.
"IF YOU FEEL YOU HAVE DONE EVERYTHING POSSIBLE FOR YOUR CHILD WITH
A DISABILITY TO HAVE A COMFORTABLE LIFE WHEN YOU ARE NO LONGER AROUND,
THEN THESE STEPS SHOULD PROVIDE PEACE OF MIND ABOUT THE FUTURE."
STEP ONE: DECIDE
WHAT YOU WANT FOR THE FUTURE.
- What kind of residential environment will your child need?
- What will their educational needs be?
- Will they be capable of employment? If so, what will they be
able to do?
- What kind of social life does your child have and how can you
ensure that it will be maintained?
- What is the religious environment you wish maintained for your
child and what special traditions are attached?
- What kind of medical care will be needed and how will it be
- Have you made final arrangements for yourselves and your child?
- Have you decided upon an advocate or guardian to look after
STEP TWO: WRITE DOWN INFORMATION ABOUT
STEP ONE is important, but completing it will not do much good
if the information stays only in the parents' heads. It needs to
be written down, but parents seem to have a hard time starting this
At the request of many parents, The Special Needs Network has created
four age-defined workbooks which provide parents with the opportunity
to detail the explicit information needed by other caregivers, schools,
medical personnel, camps, respite helpers, counselors and many others.
Families and advocates are excited that The Special Needs Network
has been able to provide My Special LifeTM,
a creative and upbeat vehicle that includes everything anyone needs
to know about your child. My Special LifeTM is a four-color
loose-leaf format in a flexible three-ring binder which allows for
additions and changes as they occur.
For more information please contact
STEP THREE: CHOOSE
AN ADVOCATE OR GUARDIAN.
This is the person who will make sure your wishes will be carried
out. And this is the step that stops most planning from moving forward.
When children are still young, backup guardians should be designated
in your will, just in case something were to happen to you.
Once your child is older, parents need to decide if it is necessary
and appropriate to become the child's legal guardian. After the
child attains the age of majority (which, for example, in Illinois
is age 18) parents have no legal authority to make legal or medical
decisions for their child, including those having to do with residential,
medical, school or work.
Guardianship may be the answer, but there are also other alternatives
available such as limited guardianship, powers of attorney or reliance
upon other state statutes that may exist.
This is a very important, yet very challenging step. Our parents
tell us how difficult it is to make the right selection, and they
find they are changing backup guardians several times because of
circumstances which change or because they realize that the person(s)
they selected either cannot or should not be the guardian. In the
words of one family, "Guardianship issues are never really finished."
DETERMINE THE REALISTIC COST OF YOUR PLAN
Many individuals with special needs receive government benefits,
but you as a family must plan in a way which allows for the possibility
that Social Security benefits and other funding might not be there.
If it is, it can help fund room and board, care and supervision,
medical care, employment and basic personal needs. Funding is currently
available through a combination of SSI and Medicaid; or the funding
might even be a combination of SSI, SSDI, Medicare and Medicaid.
Your plan must allow for the other personal needs not covered by
government programs. For example, you may need to help fund the
assistance of an advocate or guardian to look after your loved one's
There may be additional medical and dental care needed. There
may need to be funds for vacations with relatives or gifts for special
occasions. And there will always be items to boost your loved one's
self esteem. These personal needs can be funded through the use
of a Special Needs Trust.
SELECT A COMBINATION OF RESOURCES WHICH WILL HELP PROVIDE ADEQUATE
FUNDS FOR THE PERSON'S LIFETIME.
Government benefits may or may not be available, so you need to
expand your horizons in looking at funding your child's life for
the next fifty years. We have a government benefits specialist available
who knows the challenges of the benefit system and becomes a pro-active
advocate for our families.
Savings accounts and investments can benefit your child, but there
are very specific limitations as to how much money can be in your
child's name. Any amount of money over this limit could cause the
loss of benefits to which your child may be entitled. Special needs
planners know the appropriate ways to set up accounts to protect
Insurance can be an affordable and reliable option but must also
be initiated in a specific way to protect funding.
Family members often want to help and they think giving a monetary
gift or making your child the beneficiary of an inheritance is a
good thing. It is not! You must instruct them in the appropriate
ways to contribute so that your child will not lose important benefits.
FIND A QUALIFIED SPECIAL NEEDS ATTORNEY TO PREPARE CAREFULLY WORDED
LAST WILLS AND TESTAMENTS.
There are an increasing number of attorneys skilled in special
needs planning, but it is a field requiring unique knowledge and
a family should exercise care in selecting an attorney. Special
needs organizations in your area should be able to provide names
of competent attorneys. We maintain names of attorneys in many areas
and would provide that information if you have no success elsewhere.
STEP SEVEN: ESTABLISH A SPECIAL NEEDS
TRUST TO MANAGE THE RESOURCES YOU HAVE SO CAREFULLY PUT INTO PLACE.
Attorneys skilled in special needs planning are very familiar with
the establishment and maintenance of a Special Needs Trust. The
Trust is needed to protect the government benefits, provide for
the supplementary needs and assure the quality of life you have
chosen for your loved one.
We maintain a database of attorneys around the country who focus
on special needs planning. Feel free to contact
us if you need a recommendation.
In accordance with specific state court decisions and statutes,
inheritances and gifts can be left to Discretionary Supplemental
or Special Needs Trusts. The assets and income of the trusts do
not interfere with or jeopardize your child's SSI or Medicaid.
Special Needs Trust assets do not belong to the individual with
disabilities and the assets are not in the name of the individual.
The trustee has sole absolute discretion in disbursing funds only
for supplemental needs.
STEP EIGHT: PLACE ALL ESTATE PLANNING
ITEMS IN A BINDER IN A SPECIFIC LOCATION AND BE SURE THE APPOINTED
ADVOCATE OR GUARDIAN KNOWS WHERE TO FIND THEM.
These materials could easily be kept in the binder which holds
My Special LifeTM materials or some type of binder with
pockets. What all should be included? Decisions about the future,
instruction to the guardian, list of resources and their locations,
name of the special needs attorney and how to locate him/her, last
wills and testaments, Special Needs Trust, final arrangements, the
financial plan and names of important contacts.
STEP NINE: HOLD A FAMILY MEETING WITH
ALL FAMILY MEMBERS, FRIENDS AND GUARDIANS TO REVIEW YOUR PLAN.
We find that many parents assume that the siblings understand everything.
We have learned that this is absolutely NOT the case.
Take great care in educating other family members about the things
you DO want and DON'T want for your child. Be sure they understand
proper gifting for the benefit of your child so they will not be
the cause of lost benefits.
Give copies of relevant documents to those at the meeting and let
them know where you keep the binder with all the documents.
STEP TEN: REVIEW AND UPDATE YOUR PLAN
AT LEAST ONCE A YEAR.
Circumstances change. People change. Revisit your planning arrangements
to see if they accommodate the changes and if not, revise and update
your plan to reflect any changes. Take time to update your written
instructions and review your financial goals. See that your attorney
modifies documents as needed.
THEN RELAX! YOU HAVE DONE ALL THE IMPORTANT WORK TO ENSURE THE
KIND OF FUTURE YOU WANT FOR YOUR INDIVIDUAL WITH DISABILITIES.
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