Needs: Planning for the Future
receive many questions about future planning for kids with disabilities from parents,
relatives, and health care providers. If you are the parent of a child with special
needs, you need to educate yourself about the many options available. It is
never too early to start planning for your child's future.
Frequently Asked Questions: Special Needs Trusts - Answers to questions about trusts and how to create a sound financial plan.
Frequently Asked Questions: Guardianship - Answers to questions about guardianships.
Frequently Asked Questions: Advance Directives - Answers to questions about advance directives.
Overview: What are Trusts?
You already know you have to plan your estate carefully to provide the best quality of life for your child. Did you know that there are several types of trusts for special needs children? The most common types are Support Trusts and Special Needs Trusts.
Support Trusts: Support Trusts require the trustee to make distributions for the child's support in areas like food, shelter, clothing, medical care, and educational services. Beneficiaries of Support Trusts are not eligible to receive financial assistance through Supplemental Security Income (SSI) or Medicaid. If your child will require SSI or Medicaid, you should avoid a Support Trust.
Special Needs Trusts: For many parents, a Special Needs Trust is the most effective way to help their child with a disability. A Special Needs Trust manages resources while also maintaining the child's eligibility for public assistance benefits. There are two types of Special Needs Trusts: Third-Party and Self-Settled.
Third-Party Special Needs Trust: Created using the parents' assets as part of an estate plan; distributed by a will or living trust.
Special Needs Trust: Generally created by a parent, grandparent
or legal guardian using the child's assets to fund the trust (for example, when
the child receives a settlement from a personal injury lawsuit and will require
lifelong care). If assets remain in the trust after the beneficiary's death, a
payback to the state is required.
Articles about Future Planning and Special Needs Trusts
For detailed information and articles on a Life Planning, visit the following website: http://www.riverbendds.org/index.htm
Full Story: Hillary Chura, Meeting Special Needs and the Need for Peace of Mind, New York Times, November 25, 2005 (free subscription required)
Needs for School-Age Children: Planning Ahead When Your Child Has a Disability
- The information in this article will help you think about your child's future,
and prepare to consult with experts who can help you plan for the future. You
will learn how to let future caregivers know important information about your
Medicaid is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid does not pay money directly to you; instead, it sends payment directly to health care providers. Depending on your state's rules, you may also be asked to pay a co-payment for some services.
Medicaid is a state administered program. Each state sets its own guidelines regarding eligibility and services. Check with your local Department of Health and Human Services (HHS) for information on your specific state.
Many groups of people are covered by Medicaid. Even within these groups, certain requirements must be met. These may include your age, whether you are pregnant, disabled, blind, or aged; your income and resources; and whether you are a U.S. citizen or a lawfully admitted immigrant. The rules for counting your income and resources vary from state to state and from group to group. There are special rules for those who live in nursing homes and for disabled children living at home.
Medicare has two parts: Part A (hospital insurance) and Part B (medical insurance). Part A helps pay for hospital bills and follow-up care. If you qualify, this coverage is free. Part B of Medicare helps pay for doctor visits and other services. Part B is not free; individuals who want this service must pay a premium.
more information, call the Medicare program's toll-free number (800) 633-4227
or (877) 486-2048 (TDD/TTY). Information about the Medicare program can also be
accessed by visiting their website or by
visiting the Center for Medicare
and Medicaid Services (CMS). You can also visit your local Social Security
Administration office for more information.
eligibility for Social Security Disability (SSD)
is based on prior work under Social Security, SSI disability payments are made
on the basis of financial need. Two
Social Security disability programs include disabled children.
Social Security Disability Insurance (SSDI) - a Social Security program in which an adult child (age 18 or older) may receive monthly benefits based on disability or blindness if:
Under both of these programs, the child must not be doing any "substantial" work, and must have a medical condition that has lasted or is expected either to last for at least 12 months, or to result in death.
(The above information was taken from the website of the Social Security Administration)
Benefits for disabled children.
Eligibility Screening Tool (BEST) - Use this screening tool to help identify
the Social Security programs for which you or your loved one may be eligible.
Take Charge of Your Life: Know About Guardianship - All people have a right to self-determination. This booklet from the Ohio Legal Rights Service emphasizes the practical, day-to-day exercise of the right to self-determination for all people with disabilities.
Special Needs Estate Planning Guidance System - Information to help families understand the special needs planning process and work with qualified attorneys; includes state specific information, resources, and protocols from the National Alliance on Mental Illness (NAMI)
A Family Handbook on Future Planning (PDF) - This handbook from The Arc will help families develop future plans for their children with cognitive, intellectual or developmental disabilities that include protections after parents die or can no longer provide care or support.
Sample Letter of Intent Form (PDF) - This 88 item checklist shows parents how to communicate their wishes and knowledge about their child with a disability to future caregivers.
Estate Planning (PDF) (NICHCY) - This document, although somewhat dated, provides useful information about planning for a loved one's future. Plan ahead by writing a specialized will and trust that protects your childs eligibility for government benefits and provides for his or her needs. Learn how to write a Letter of Intent that educates future caregivers about your child with a disability.
Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death (book review) - This completely revised and greatly expanded 5th edition of Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death discusses all the steps that parents should take to assure a secure and happy life for their disabled son or daughter.
Special Needs Trust Administration Manual: A Guide for Trustees (book review) - This is an invaluable guide for anyone who is managing a Special Needs Trust for a person with disabilities. In clear, easy to understand language, the authors explain how a trustee can use trust funds to meet the financial needs of a person with disabilities while complying with the complex rules of government benefit programs.
The Arc of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with our network of members and affiliated chapters, we improve systems of supports and services; connect families; inspire communities and influence public policy.
The United States Department of Labor, Office of Disability Employment Policy is a federal government Website for information of interest to people with disabilities, their families, employers, service providers and many others.
The Institute for Community Inclusion supports the rights of children and adults with disabilities to participate in all aspects of the community. As practitioners, researchers, and teachers, we form partnerships with individuals, families, and communities. Together we advocate for personal choice, self-determination, and social and economic justice.
The National Academy of Elder Law Attorneys, Inc. is a non-profit association that assists lawyers, bar organizations and others who work with older clients and their families. Established in 1987, the Academy provides a resource of information, education, networking and assistance to those who deal with the many specialized issues involved with legal services to the elderly and people with special needs.
The Special Needs Alliance, or SNA , is a national network of lawyers dedicated to Disability and Public Benefits Law. Families rely on SNA as the best way to connect with the nearest lawyer with proven expertise in maintaining public benefits for their loved ones as well as for estate planning to protect their life savings.
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Last updated: 05/18/18