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ESTATE PLANNING FOR FAMILIES
WITH A
DISABLED CHILD
INTRODUCTION
 | The focus of this article is on estate planning
for families who want to provide for a disabled child (or another disabled
family member), but whose wealth is not likely to be sufficient by itself to
pay for all of the child's lifetime support, and who thus want the child to
receive all public support to which he or she may be entitled. |
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"Disability" for purposes of this article refers
to any physical or mental condition, such as mental retardation, that is
likely to be long-term and will seriously affect the child's ability to be
self-supporting. Inability to be self-supporting includes both: |
Personal Care Needs. The practical question is: What will happen when
the parents can no longer take care of the disabled child's personal and
health-care needs?
Property Management and Protection. Here the question is: Who will
handle the disabled child's financial affairs, including their receipt of public benefits and resources, when the
parents are no longer able to do so?
 | If no planning
is done in either situation, a Court-supervised guardianship may be the only
solution.
However, guardianships should be avoided if at all possible. |
 | Key planning goals for parents will
thus involve maintaining the disabled child’s
eligibility for need-based state and federal programs, such as SSI and Medical
Assistance, and protecting the family’s property from government claims for
reimbursement of such benefits.
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DON'T OVERLOOK ESTATE PLANNING FOR THE REST OF THE FAMILY
 | Planning for a disabled child should properly be done within the context of
the family's overall estate plan. Such a plan should consider: |
Lifetime needs of parents, including both property protection in the event
they become incapacitated, and health-care powers of attorney and end-of-life directives.
Death-time planning
for the tax-efficient transfer of property to the next generation.
 | Once the overall
estate plan has been designed, then specific planning for the disabled child should
be addressed. |
OPTIONS FOR PROVIDING FOR A DISABLED CHILD
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DIRECT OUTRIGHT TRANSFER TO CHILD
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This option will be the de facto result if the parent dies without a
Will, since the parent's property will then pass outright under state intestacy law. The same
result will occur if the parent’s Will makes a direct transfer to the disabled
child.
This is an inadvisable solution, even if the child may
be marginally capable of managing the bequest.
Because the child will be the owner of the bequest, the
property will be immediately vulnerable to reimbursement claims by the state.
Direct ownership may also render the child prospectively ineligible for needs-based government
assistance programs until the bequest has been totally spent.
An outright transfer thus will likely benefit only the state, not the child.
 | INDIRECT TRANSFER TO CHILD USING A THIRD PARTY |
The "indirect transfer" technique involves transferring property intended
for the disabled child to a third party, such as a sibling or other family
member, with the informal understanding that the third party will use the
property to provide for the needs of the disabled child.
This in an inherently risky maneuver,
however, because there can be no assurance that
the disabled child will ultimately receive the property. Since by definition the
disabled child can have no legal claim to the assets, the bequest will
be treated as the property of the third party.
Even if the third party is totally trustworthy, there is the inevitable risk
that he or she may die, be divorced, acquire a creditor as part of a lawsuit, or go into bankruptcy.
In any of these events, the property will likely be involuntarily lost.
 | TRANSFER TO A TRUST FOR THE DISABLED CHILD |
While a trust in theory may protect the property
for the disabled child, not all trusts afford the same degree of protection. In the context of estate planning for a disabled child,
these differences can become crucial. Choices among trust models include:
MANDATORY DISTRIBUTION
TRUST. This type of trust would
require the trustee to pay the trust’s income or principal, or both, to the
disabled child, with no discretion to retain the property inside the trust.
A mandatory distribution-type of trust would be inadvisable for a disabled child, since it does
not allow the Trustee to withhold making distributions if they are not needed by
the child. The income and/or
principal would be treated as an available resource to the child, and would
disqualify the child from all needs-based government programs until the trust
fund was exhausted.
SUPPORT TRUST. A trust of this kind directs the trustee to make
distributions of income and/or principal as needed to provide for the disabled
child’s "support" or "maintenance." Although almost all trusts for children
routinely contain such terms, they are not recommended for a trust intended to benefit a
disabled child, since these very words will likely make the trust an available
resource and also disqualify the child from needs-based government programs.
DISCRETIONARY SUPPLEMENTAL
NEEDS TRUST. This kind of trust directs the
trustee to make distributions for the child's benefit, but it allows the trustee
complete discretion as to the amount and timing of such distributions. The
stated purpose of this trust is that trust property should only supplement
-- but not supplant -- the public benefits for which the child is
eligible.
Because the trust does not
mandate distributions, or even establish a fixed standard for distributions
(e.g., "support" or "maintenance"), it will not be treated as an available
resource for government-program eligibility purposes.
BEST CHOICE: DISCRETIONARY SUPPLEMENTAL NEEDS TRUST
Comparing the three trust models, the
Discretionary Supplemental Needs Trust will best shield family assets intended to
benefit the disabled child from state claims for reimbursement, while at the
same time allowing the trustee to provide for any needs of the child that are
not covered by government programs.
Pennsylvania courts have consistently upheld such Discretionary Supplemental
Needs Trust from state attack. The courts have ruled that a discretionary trust, where
the trust property is clearly intended only to supplement and not supplant
public benefits, does not count as a resource of the disabled beneficiary, and
the trust is not liable to repay public benefits provided to the beneficiary.
DESIGNING AND ADMINISTERING A
DISCRETIONARY
SUPPLEMENTAL
NEEDS TRUST FOR A DISABLED CHILD
A Discretionary Supplemental Needs Trust can be created either in a parent’s Will
or a Lifetime Trust. That choice will depend on the parent’s overall estate
planning goals.
Using a lifetime trust has certain advantages. For instance, it can ensure
that the disabled child will begin to receive benefits at the time parental
support stops, whether that occurs upon the parent's death or earlier in case of
the parent's lifetime incapacity.
 | Selection of Trustee is Crucial
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Who should be
named as the trustee or trustees of a Discretionary Supplemental Needs
Trust? By definition, the parents will not be available to serve, so someone
else will have to be named. Special talents are required of trustees of a
Discretionary Supplemental Needs Trust, since they must be committed to
identifying the needs of the disabled child, investigating all sources of
benefits available to the child apart from the trust, and ensuring that the
child receives them before expending any of the trust assets.
Fundamentally, the trustee must have both the
time and the talent
to perform this job well. If possible, one or more alternate or successor
trustees should also be named in the trust document to serve if the initial trustee
later ceases to serve for any
reason.
STEPS TO TAKE IN ESTATE PLANNING
 | As is evident from the above discussion, estate planning for families with a
disabled child involves many considerations. Any plan for such a family should
start with an understanding of the specific disabling condition that affects the
disabled child.
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 | Capacity is not an all-or-nothing
condition. An estate plan intended to
benefit a child who, with some supportive services, can live independently in
society may differ significantly from a plan for a child who will always need
institutional care. |
 | If the child is physically but not mentally impaired, the
estate plan should recognize the child's ability to make decisions and
participate in the management of his or her financial resources.
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 | Any estate plan should be flexible.
The plan should address the
possibility of a change in the child's condition. The less certain the
long-term prognosis, the more flexibility the plan should contain. |
 | As with any estate plan, be prepared to review and if necessary revise your
estate plan every three to five years, or any time there is a significant change
in the law. |

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