Developing an Estate Plan for Parents of Children with Disabilities Part 2 of 2
Make a Plan
Nine-Future Planning for Your Child: How do you want to provide for your
child with disabilities if you die or are too ill to provide the care? You can't
make any plans if you don't have any idea what you want. If it's too difficult
to think about your own death or loss of capacity, there are two ways to combat
this: 1) consider what you don't want (I don't want my children to have to
decide if I should be kept on life support if I am dying), and 2) consider what
you would not want to have to do for someone else. For example, would it break
your heart to have to figure out where your friend's children would live if
your friend died? By not planning for your own future, these are the kinds of
decisions other people will have to make for you and your child if you are no
longer able. Take some time to consider these issues, talk with friends and
family, and pause and then come back to it if it becomes overwhelming. Remember
that as a parent of a child with a disability, your planning will ensure that
he or she will be cared for in the best way possible when you are no longer
able to do so.
Ten-Meeting with a Special Needs Attorney: Meet with an attorney.
Not only can an attorney draft the necessary documents for expressing how you
want your property, finances, health care, and care of your children handled
following your death and/or incapacity, but your attorney can also help you set
up financial strategies, such as trusts, to ensure that your child with a
disability can continue to maintain a quality life when you are gone. Make sure
this attorney is familiar with Medicare, Medicaid, Social Security, and
Supplemental Security Income (SSI) and the unique challenges that a disability
brings to the estate planning process.
Develop your Plan
Eleven-Planning for Your Own Disability or Incapacity: Determine how your
finances and health care will be managed if you are no longer able to manage
them. How your finances will need to be handled, depends upon your situation.
Here are the options:
Arrangements for Finances: You can ask a trusted friend, or relative, or hire
someone on a part-time or one-time basis to help manage your money and property.
You could rely on automatic banking, direct deposit, or naming someone on your
bank accounts to allow him or her to sign checks, pay bills, and transfer money
between accounts. If you are the representative payee for your child's Social
Security benefits you cannot formally name someone to fill this role should
something happen to you, but you can include your preference in your letter of
intent (see Step Eight, above). Most important, you should think about
potential representative payees for your child's Social Security benefits and
approach those individuals to see if they are willing to assume that role if
Attorney to Manage Finances. A power of attorney is a written document that appoints
someone to handle financial matters in whatever way you spell out. For
instance, the person you appoint could pay your bills, manage your bank
accounts, and make sure that you are getting your income. Make sure you get a
durable power of attorney, that is, one that continues to be effective after
you lose capacity. The person you name as your attorney-in-fact or agent should
be someone you trust, as you are giving this person an immense amount of power
over you and your finances. If your child is disabled but has capacity (i.e.,
the child can manage his or her own affairs), then at 18 the child should also
execute a power of attorney to appoint an agent to help with financial
decisions if needed.
for Health Care.
There are countless informal and creative ways you can have health care and
living needs managed. Often friends, family, neighbors, and the community will
help provide you with the things you need. To ensure that you have your basic
needs met, however, you may want to consider some of the more formal options
Health Care Directives. A health care directive is a written document in which
you name someone to make decisions about your care. By putting your health care
wishes in writing, you give your family and loved ones a gift: they will know
your health care preferences and to whom you choose to make decisions for you.
Some states provide standard forms for powers of attorney for health care which
you can use to nominate agents to manage your health care for you.
DNR/DNI/DNH. You may also choose
to limit the scope of emergency medical care, through a “do not resuscitate/do
not intubate/do not hospitalize” directive by you to your physician. Because of
the limited scope of this directive, a health care directive should be
completed as well.
Twelve-Your Child's Conservatorship or Guardianship: Review your child's
conservatorship or guardianship. A conservatorship or guardianship is a court
proceeding to designate a person to handle the financial or health care
decisions for an incapacitated person. If your child has a guardianship or
conservatorship, you should identify who should succeed you if you are no
longer able to serve. Your state may have a procedure for you to designate your
preference for who should replace you if needed. If you do not have a guardianship
or conservatorship for your child but believe it may be needed after your
death, you should discuss this with your attorney and get advice on the steps
to take to be sure your child will be protected. Your planning should include
identifying possible guardians or conservators if needed for your child and
making sure those individuals understand the steps they will need to take to
have the court appoint them for that role.
Thirteen-Decisions and Arrangements upon Death: Determine what
arrangements should be made for you or your child at death.
To most people's surprise, organ and tissue donation can be valuable no matter
what the age of the donor! There are multiple ways you express your wishes to
donate or not, which include: through your health care directive, driver's
license, written statement, or donor registry. Unless you expressly state that
you do NOT want to donate organ or tissue upon your death, your health care
agent or relatives (in order of preference) can make the decision to donate
your organs at the time of your death. A parent may consent to the donation of
a minor child's organs.
In many states, you may name the person who you want to be in charge in a
health care directive, or you can fill out an advance funeral directive. The
funeral directive gives the person you name the power to make funeral
arrangements, and can be helpful if you believe that people in your life may
disagree about how to carry out your wishes regarding your funeral and the
disposition of your body after death. You can prepay funeral expenses for both
you and your child. If your adult child does not have the capacity to make his
or her own funeral arrangements, you will need to see what steps your state
laws provides for how a parent or guardian can make those arrangements in
Fourteen-Your Own Estate Plan and Child's Special Needs Trust: Have your attorney
prepare a will or revocable trust that specifies what will happen to your
property at your death. This document directs what portion of your estate
should go to your child. Because Medicaid and the Supplemental Security Income
(SSI) program impose special rules about how much money a person with
disabilities can have to remain eligible, your estate plan may include a
special needs trusts (SNT). A SNT can ensure a quality life for the child
without affecting your child's ability to continue to receive Medicaid and SSI,
as long as the trust is drafted and administered properly. If you have specific
goals or preferences for how your child should be cared for after your death,
they can be specified in your will or living trust.
Review and Update your Plan
Fifteen-Updating Your Plan: Remember that planning for the future is a
process, not a one-time task. As circumstances change for you and your child,
you will need to revisit your plan. Sometimes this will mean updating your
documents on your own, but usually you will need an attorney to guide you. You
should update your information every year.
with an attorney who is familiar with special needs trusts and disability
benefits will help ensure that you have done everything possible to provide for
your child with disabilities.
The above 15
steps are not easy, but they will bring you peace of mind knowing that you have
planned in advance for the time when you may no longer be able to manage your
own or your child's financial and health care matters.