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Special Needs: Planning for the Future
FAQs | Articles | Medicaid/Medicare | Social Security | Free Resources | BooksOrganizations

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We 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.

How can you ensure that your child receives appropriate therapies and medical treatments? How can you present the nature of your child's disabilities and needs to those who may care for them without "scaring" them away? How can you find appropriate caregivers who will carry out your wishes AND respect your child's goals, dreams and life expectations?

What do you need to know about living arrangements, wills, trusts, guardianship and estate planning? Special Needs: Planning for the Future includes articles, books, and free resources that will help in your special needs future planning journey.

FAQs

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.

Self-Settled 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.

Download the Special Needs Alliance Free Trustee Handbook.

Source: Special Needs Alliance

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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)

Special 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 child.

Estate Planning: Getting Started - (PDF) According to Frank Brunetti, in order "to begin the estate planning process, parents must focus on two tasks. The first is to perform an "inventory." The second is to retain an attorney with expertise in estate planning for children with disabilities."

Funding a Special Needs Trust: How Much is Enough? - As a parent or guardian, you want to ensure that your child with special needs will remain financially secure even when you are no longer there to provide support.

Choosing the Ideal Trustee of Your Child’s Special Needs Trust (PDF) - According to Stephen Dale, "...after watching hundreds of Special Needs Trusts under administration, I have come to the conclusion that the selection of a trustee is the greatest factor in whether a Special Needs Trust succeeds or fails."

Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning (PDF) - Adult siblings of people with developmental disabilities are the most likely people to be involved in the future as parents age and can no longer provide care. Yet many parents are reluctant to involve their children with or without disabilities in future planning.

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Medicaid and Medicare

Medicaid

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

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.

For 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.

Source: Centers for Medicaid and Medicaid Services

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Social Security Programs

While 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.

Supplemental Security Income (SSI)
- a Social Security program that pays monthly checks to the elderly, the blind, and people with disabilities who do not own much or who do not have much income. If you get SSI, you usually get food stamps and Medicaid, too. Medicaid helps pay doctor and hospital bills.


Under the Supplemental Security Income (SSI) program, a child from birth to age 18 may receive monthly payments based on disability or blindness if:

  • he or she has an impairment or combination of impairments that meets the definition of disability for children; and
  • the income and resources of the parents and the child are within the allowed limits.

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:

  • he or she has an impairment or combination of impairments that meets the definition of disability for adults; and
  • the disability began before age 22; and
  • the adult child's parent worked long enough to be insured under Social Security and is receiving retirement or disability benefits, or is deceased.

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.

Benefit 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.

Apply for benefits online
.

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Free Pubs & Resources

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 child’s 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.

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Books & Videos

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.

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Organizations

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.

Disability.gov is the federal government's one-stop Web site 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: 04/26/13

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