Special
Needs: Planning for the Future
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?
Source:
Special Needs Alliance
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.
Articles about Future Planning and Special
Needs Trusts
Here are links to
articles about future planning.
Full Story:
Hillary Chura, Meeting Special Needs and the Need for Peace of
Mind, New York Times, November 25, 2005 (free subscription
required)
*Note: The Association of University
Centers on Disabilities, or AUCD, is a non-profit organization
that promotes and supports the network of university centers on
disabilities across the country funded by the Administration on
Developmental Disabilities. AUCD seeks to advance "policy and
practice for and with individuals with developmental and other
disabilities, their families, and communities." To visit AUCD's
website, go to
http://www.aucd.org/.
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.
Future Planning for Parents of a Child with a Disability -
When you think about what your child may need when you are no
longer available to act as your child's advocate/protector, you
know why people procrastinate in making plans for the future.
This article will allay anxieties and help you move forward on a
plan.
Estate Planning: Getting Started - 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."
How Do I Know if a Special Needs Trust is Right for My Son or
Daughter? - While you'll need to consult a qualified
disability and elder law attorney to determine how this type of
trust would work in your situation, knowing some SNT "basics" is
an important part of planning for your child's future.
Choosing the Ideal Trustee of Your Child’s Special Needs Trust
- 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.
Medicaid and
Medicare
Medicaid
Source:
Centers for
Medicaid and Medicaid Services
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.
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)
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.
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
- 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 (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.
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.
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.
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.
