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Article of Interest - Future Planning

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Special Needs for School-Age Children: Planning Ahead When Your Child Has a Disability
Army One Source

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Topics Include:

  • Making a plan

  • A plan checklist

  • Thinking about finances

  • Thinking about where your child will live

  • Thinking about advocates and guardians

  • Government benefit programs

  • Finding an attorney

  • Instructions to a future caregiver

  • Resources

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 steps:

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 care.

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 plan requires.

Write a detailed letter about your child for your child's future caregiver.


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 Child."

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 care.
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 physical activities?
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 programs?
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, too.

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 clothing.

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 disabilities:

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 home.

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 be possible.

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 setting.

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 Resources section.)
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 mental health)

Have a commonsense, problem-solving approach

Be willing to ask questions and speak up on behalf of your child

Be kind

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 Medicare

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 you use.

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.


Life-planning organizations

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 1-800-247-6553.)
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.

National NCIL
1916 Wilson Blvd., Suite 209
Arlington, VA 22201
703-525-3406 v
703-525-4153 tty
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 Disabilities (NICHCY)
Box 1492
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
800-872-5827 v
202-973-7197 tty
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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