Special Needs for School-Age
Children: Planning Ahead When Your Child Has a Disability
Army One Source
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Making a plan
A plan checklist
Thinking about finances
Thinking about where your child
Thinking about advocates and
Government benefit programs
Finding an attorney
Instructions to a future caregiver
If your child has a disability, or
another family member with a disability relies on you for care
and support, you're likely to be concerned about the future. You
know that it's important to understand the best way to arrange
your financial and legal affairs to be sure your child's care
continues after your death.
The following information is meant to help you think about your
child's future. It will help you get ready to talk with any
experts who may help you plan your estate. It will also help you
understand how to let future caregivers know important
information about your child.
Making a plan
When you make your plan, you will want to take the following
Make a plan checklist. This will contain important information
about your child and your own hopes for your child's future.
Making this list will help you organize your thoughts before you
talk with the attorney who will work with you. It will also help
you write a letter to a future caregiver about your child's
Summarize your finances. This will help you, your attorney, and
any financial expert understand what may be available to your
child after your death.
Think about where your child might live after you die.
Think about potential advocates or guardians for your child.
Understand the basics about government benefits that may be
available to your child. For example, your child may qualify for
benefits such as Supplemental Security Income (SSI), Social
Security Disability Income (SSDI), Medicare, or Medicaid.
Find an attorney who has experience making estate plans for
families like yours.
Work with your attorney and possibly a financial planner to make
any financial arrangements and prepare the legal documents your
Write a detailed letter about your child for your child's future
A plan checklist
Making a plan checklist serves three purposes. It will help you
clarify and organize your thoughts. It will help an attorney and
any financial experts who work with you on your plan to
understand your child's needs. And it will help you later on as
you write an instruction letter to a future caregiver.
The following sample checklist is meant to help you begin.
Because every person with a disability is unique, just as every
family is unique, it's important to think of the topics listed
here as a starting point only. As you think about your child's
needs and your own family situation, you are likely to add
topics of your own.
You can call this a "plan checklist" or a "brainstorming
document." Or you might want to give it a title like "About My
Sample plan checklist
Your child's full name (and any nicknames or special names),
place and date of birth, and Social Security number.
A description of your child's disability.
Medical (including mental health) care your child receives now
and is likely to need in the future, and information about any
agencies that are involved.
Names and contact information for doctors or other specialists
who have taken care of your child. Any insurance or government
assistance programs that cover or help cover the costs of that
Names and contact information for people and companies who have
fitted your child with assistive devices -- for example, a
wheelchair or hearing aid.
Your child's education. What kind of education is your child
receiving now? Where is the school or training center? What are
your hopes for her future education or training? If your child
has an individual education plan (IEP), you may want to describe
where your copy of that paperwork is kept.
Your child's personality. Is he outgoing or cautious in a new
situation? Does he enjoy lots of activity around him or does he
prefer a quieter environment?
Your child's interests. Does she enjoy pets? Does she have
favorite books, music, or friends? Does she enjoy certain
Your child's strengths. What does your child do well?
Your child's behavior. Is there certain behavior that a future
caregiver should know about? What do you think are the most
effective ways to deal with it?
Religion. Is your child involved in a faith community? Is it
important that this relationship or teaching of specific beliefs
continue after your death?
Your child's employment. If your child has been employed, what
has he been good at doing? What has he enjoyed? Are there
certain employers who have responded well to his needs? If your
child is still young, are there certain jobs you think he will
be able to do well in the future? Has your child been involved
in any sheltered workshop or competitive supported-employment
Possible living situations. Where would you want your child to
live after your death (or if you become unable to care for her)?
Is living with a relative a possibility? Is a group home a
possibility? A residential program?
Who should take on responsibility for your child after your
death? Who should take care of financial matters? Who should
advocate for your child's continuing good care? Who should take
on those responsibilities if your first choice is unable to or
becomes unable to later on?
Thinking about finances
Before you talk with an attorney about planning your estate,
it's important to make a summary of your financial situation.
Make lists of:
Your assets (including real estate, savings, stocks or bonds,
personal items of value such as jewelry, cars, or trucks)
Your income (including any pension income, interest on savings,
Social Security, veteran's benefits). Is any of this income
payable to your child on your death?
Any insurance policies you have and the beneficiaries.
Your liabilities (mortgage, credit-card debt, or other debt)
If your child has any income or assets of his own, list those,
Predicting your child's needs
It's also important to try and predict what your child's
future financial needs might be. Your attorney will work with
you to make a plan that provides the most government funds
possible for your child. But you will still want to think ahead
about additional financial needs, such as medical expenses that
aren't covered by Medicaid, any payments to advocates or
guardians, or money for items like a TV, radio, or extra
Thinking about where your child will live
Another key part of your plan has to do with where your child
will live after you die or can no longer care for her yourself.
This usually requires thought and hard work. Your decision will
be affected by your family situation, your child's needs (which
may change in the future), and your finances. As you begin to
think about this, it may be helpful to review the kinds of
living options that are generally available to people with
Family arrangements. It may be possible to make arrangements for
your child to continue to live in your home, either with another
family member as caregiver or with a paid caregiver. Or it may
be possible for your child to live in another family member's
If you are thinking of an arrangement like this, it's important
to make sure that any family members you expect to be involved
in your child's care understand what their responsibilities
might be. It's also important to be sure that they are willing
and able to take on those responsibilities. Keep in mind that
your child may be able to pay rent through Social Security
Disability Income (SSDI), Supplemental Security Income (SSI), or
possibly with funds placed in a trust.
Group homes. In a group home, a number of people with
disabilities live together. Group homes can be for profit or not
for profit. They can be run by government agencies, religious
organizations, charitable organizations, or private individuals.
At publicly funded group homes, residents are ordinarily charged
on the basis of their ability to pay. For people with little or
no money (or assets) this usually means the cost is limited to a
person's SSDI or SSI entitlement. A Medicaid waiver might also
Group homes in residential neighborhoods are often called
"community residences." Other group homes, sometimes called
"Intermediate Care Facilities" or "ICFs," are ordinarily less
integrated into the community. They also tend to serve residents
with a wider range of disabilities.
Adult foster care. In this kind of arrangement, a person who is
paid by the government cares for the person with a disability in
a private home. The family-like setting that foster care can
provide can have advantages. The disadvantages include the
possibility that a provider may decide to stop providing foster
care, and your child would then have to move to a different
Independent living. This means that a person with a disability
lives on his or her own, usually in a house or apartment.
Independent living can be an appropriate choice for a person who
needs little assistance from others to be healthy and
participate in the community. Check-ins by relatives or paid
workers to perform tasks like paying bills or household
maintenance can also help make independent living possible for
people with less severe disabilities. Independent living can
also include subsidized housing apartments.
Thinking about advocates and guardians
Before you talk with an attorney about formalizing a plan for
your child's future, it's important to think about who might
advocate for your child after you die, no matter what sort of
setting your child will live in. Depending on your child's
situation, this advocacy can be done through either a formal
legal guardianship or through a less formal arrangement. There
are also organizations that can provide, for a fee, advocacy and
other services for your child after your death. (See the
Ordinarily, parents name a guardian in a will as the person who
will take legal responsibility for their child if they die when
the child is under 18. When the child turns 18, the guardians
can petition the court if the nature or extent of the child's
disability makes it seem that guardianship should continue. If
you die when your child is 18 or older, guardianship ordinarily
must be pursued through a court proceeding.
Whether your child is under 18 or is already an adult, you will
want to talk carefully with an attorney about the appropriate
thing to do. Laws concerning guardianships and estates vary from
state to state. Depending on your financial situation and your
child's disability, you may want to pursue a guardianship for
your child, or you may want to use another estate-planning
device: a trust in which trustees manage your adult child's
inheritance, and a person you name on an informal basis (usually
by letter) becomes your child's advocate.
Qualities to look for
No matter where your child will live, and regardless of
whether you choose a guardian arrangement or less formal
advocacy arrangement, it's important to think about the
qualities you would like the guardian or advocate to have. It's
important to know that your child will have a relationship with
someone who will carefully review decisions that are made about
his care, insist that he be treated well, and be his friend.
It is important that the person you select:
Understand the responsibilities she may be undertaking
Be willing to take on the task
Be able to take on the task (be in generally good physical and
Have a commonsense, problem-solving approach
Be willing to ask questions and speak up on behalf of your child
When you are thinking about potential guardians or advocates, be
sure to think of additional people who would be willing to take
on the position if the first guardian or advocate dies or
becomes unable to do what she needs to do.
Government benefit programs
The rules and regulations related to government-benefit programs
are complicated. To find out how they might affect your
financial and legal planning, it is important to talk with an
attorney who knows this area of the law well. You may already be
familiar with some government benefits and how they might apply
to your family. But as you start thinking about the future, it's
a good idea to review the most common government benefits. They
tend to fall into two general categories:
Supplemental Security Income, Medicaid
Programs like Supplemental Security Income (SSI) and Medicaid
allocate benefits based on financial need. To qualify, your
child can't have more than a certain amount of money or
property. In order to make the most of your child's possible
benefit under programs like these, your attorney may suggest
placing an inheritance or any other property your child might
have in trust, sometimes referred to as a special needs trust.
Social Security, Social Security Disability Income, and
Benefits under programs like Social Security and Medicare are
not based on whether your child has income or assets. They rely
instead on whether you or your child have paid into the programs
in the form of Social Security tax or self-employment tax.
Whether your child will benefit from these programs is
determined by the age of your child when he developed the
disability and, if your child developed the disability after age
22, the extent of his employment history.
Your attorney can advise you about the best ways to maximize
your child's government benefits after your death, especially
through the use of trusts that can protect your child's assets.
Finding an attorney
When you are making plans for your child's future, it's
important to find an attorney who is experienced with the needs
of families like yours. This ordinarily means that you will want
to talk with an attorney who has experience in estate planning
(especially the use of trusts) and tax laws, and with the laws
and regulations governing Medicaid, Medicare, Social Security
Disability Income, Supplemental Security Income, and other
government benefits that may be available to your child.
One place to start is by asking friends or co-workers about
attorneys they have used for estate planning. Ask if the
attorney listened well, responded to requests or questions
within a reasonable time, and was courteous. You can also ask
your banker, or call your local bar association and ask for
names of attorneys who focus on estate planning for families
like yours. As part of their services, for which you pay a fee,
some life-care organizations (see the Resources section) also
provide referrals to attorneys with expertise in this area.
When you interview your attorney for the first time, by phone or
in person, ask how much experience he or she has in estate
planning for families who have children with disabilities. Make
sure the attorney listens well, treats you with courtesy, and is
clear about what his or her fees and expenses might be. It is
important to feel comfortable with and confident in any attorney
Instructions to a future caregiver
Many parents, regardless of whether their child has a
disability, write letters to a future guardian or caregiver
about their children's future care. These letters often contain
information about the kind of education they want for their
child (including religious instruction), and the kinds of values
they hope will be transmitted to their child.
When you have a child with a disability, writing a letter like
this is critical. Although it is not a legal document, it will
be the best guidance a future caregiver can have about your
child. You know your child -- his needs and personality --
better than anyone else. You know his medical history, including
what does and doesn't work, better than anyone else, too. It is
important to collect all of this information in one place. Be
sure to include a copy of your child's IEP if he has one.
You can use the checklist that you created as a basis for your
letter. Take your time when you write it. You may want to show a
draft to a close friend or relative to ask if it is clear. Keep
it with your will and other important documents related to your
child. Because your child's needs -- and what you want a future
caregiver to know -- will change with time, it's important to
read and update the letter regularly. You may want to key this
review to your child's birthday so you're sure to remember.
Some organizations provide services, for a fee, to families who
are planning ahead for a child with a disability, including
serving as advocates for an adult child whose parents have died
or are no longer able to provide care. They include
PLAN (Planned Lifetime Assistance Network)
National PLAN Alliance
195 Woodlawn Avenue
Saratoga Springs, NY 12866
For a fee, individual PLAN programs provide life-planning
services for families who care for a relative with a disability.
These services include development of a plan of care,
identification of finances to support the plan of care, helping
to create the necessary legal documents, and identification of a
person or persons to carry out the plan of care. PLAN programs
now exist in 17 states, and the National PLAN Alliance, the
umbrella organization for PLAN programs, hopes to establish them
in all states.
Planning for the Future: Providing a Meaningful Life for a
Child with a Disability After Your Death, 4th Edition
by L. Mark Russell, Arnold E. Grant, Suzanne M. Joseph, and
Richard W. Fee (American Publishing Company, Park Ridge, IL)
(Borrow from your library or order from the publisher at
A comprehensive and detailed description of the life-planning
process, including explanations of tax issues and
estate-planning devices, government benefits, and detailed
guidance about providing instructions to future caregivers.
1916 Wilson Blvd., Suite 209
Arlington, VA 22201
An organization that advocates for services and rights for
people with disabilities and provides information on independent
living, including links to local Centers for Independent Living.
National Information Center for Children and Youth with
Washington, DC 20013
Provides information on a wide range of disability-related
issues. Although the organization focuses on children and youth,
many of the materials apply to adults with disabilities, too.
The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
An organization of and for people with mental retardation and
related disabilities and their families, with useful Web site
articles and links.
United Cerebral Palsy (UCP)
1660 L Street, NW, Suite 700
Washington, DC 20036
A national organization with a nationwide network of affiliates,
committed to change and progress for people with cerebral palsy
and other disabilities.
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