Articles, Blog

Becoming an Adult: Legal and Financial Planning

November 30, 2019

You know a lot of parents come to me and they
say, “Now my child’s 18 and everything is going great and we’re not experiencing any
barriers to medical issues or financial issues.” There are other parents who say, “You know
what? We’re having some problems.” They might be problems in accessing financial information
or health care information and they ask “where do I turn?” At that point, obviously, would
be to have them start speaking to an attorney. I have a lot of families and they ask “What
should I do? Should I just do nothing and let my son or daughter be a self-advocate?
Should we talk about health care power of attorney, so I can be involved or guardianship?”
As a parent, my answer is whatever it takes to make sure that in my perspective, that
my daughter is safe, that she’s not taken advantage of, that she’s getting the care
that she needs, those principles usually are what guide families in deciding what it is
that they feel might be best. For looking at different means of assisting
our adults with decision-making, it’s important to remember that we shouldn’t be putting too
many things in place when our ultimate goal is to have our son or daughter be able to
as self-determined as possible. Everyone makes mistakes, you know we learn from them we grow
from them and it’s important for parents to remember that we need also to allow our sons
or daughters to make mistakes and learn and grow from them as well. If the individual
with the disability, when they turn 18 or the age of majority in their state, would
like to have the parent or other family members assist them with either medical decision-making
or financial decisions, they can actually go to an attorney and have what are called
Powers of Attorney drafted. A power of Attorney is a legal document where someone could give
a financial power to someone else to assist them with their financial decision-making
or a medical power to assist them with their medical decision-making. An attorney would
need to feel comfortable that the individual who is signing these documents actually understood
what it was that they were signing because they are giving these powers to somoene else
to assist them. As we know, we are our kids’ guardians until they’re 18. But at the 18th
birthday, guardianship is another option that some families are looking at. They would like
to continue being the guardian of their their son or their daughter and perhaps also become
guardian of the assets and they’re two different things. That process is inititated in a court.
If I as a parent were looking to seek guardianship over my son or daughter, or other family members,
I would petition the court to become the guardian of the person, or the assets. Keep in mind,
if you do become the guardian of someone’s assets, there are financial accounting and
a lot of responsibilities that the court is looking to make sure you uphold, so the individual
with a disability that a guardianship is granted over is not taken advantage of in some financial
or other way. You should check with your state, if they
have a health surrogacy law. What that means is that oftentimes families get concerned
if something were to happen to their child medicallya nd they were not able to make the
decision in the momebt, who would make the deicison for them. A helath surrogacy law
says that the next of kin can make the decision in an emergency situation. And typically the
next of kin order is a spouse, followed by a parent and so if parents are worried about
legal guardianship or power of attorney, it’s important to know that if there is a health surrogacy
law in your state, and an emergency happens, that you will be able to make the medical
decisions for your child in that moment based on your state’s health surrogacy law.
Government benefits are sometimes really tricky for people to understand and they are more
complicated because they can be very different for a child who has a disability versus an
adult who has a disability. A lot of parents think that everything will kind of continue
status quo when our children become adults when it come to those typse of benefits, but
that’s not exactly the case. To qualify for a needs-based government benefit, such as
SSI which is Supplemental Security Income, that’s a monthly income from Social Security,
and also Medicaid which is a health insurance program for adults with disabilities, you have
to pass certain tests. Not only do you have to have a disability, but you also can’t have
more than $2,000 in your name, of countable resources. A lot of people don’t realize that.
At that point, families come to me and they are asking a lot of questions. Some of those
questions revlove around “well, as a parent, I’m planning on when I’m no longer here, leaving
my estate if I have a spouse to my spouse first, and then to be divided between any children
I have. If I have a child with a disability, and if in fact they might need government
benefits such as SSI or Medicaid, and they can’t have more $2,000 then what do I do?”
The answer to that question for a lot of families could be to take a look at what’s
called a special needs turst. A special needs trust is a specialized legal document that
assists someone with a disbaility in protecting any govenment benefits that they might need
now or in the future. The money that goes into a special needs trust is actually protected
from being counted as an available resource when it comes to applying for government benefits.
Different states call these special needs trusts different things. Some states will call them
a supplemental needs trust. Some states will call them a special needs trust. It’s important
to know that if you have one of these documents established and you move to another state,
it’d be a great idea to check with an attorney that understands special needs trusts law,
to make sure that it’s valid in your state. These trust laws can vary from state to state
and actually benefit programs for people with disabilities can vary from state to state and
even county to county. The money in a special needs trust has to be spent solely for the
person and it cannot replace any government benfits that are out there. So for example,
the special needs trust can pay for all the things that government benefits is not already
providing. I look at government benefits as providing basic needs, food and shelter. The
special needs trust is a way to help enhance the life of someone who has a disability.
A special needs trust can pay for things that the individual enjoys. You know the social
types of things that cost money to accomplish that perhaps an SSI check or another benefit
does not provide. Once that happens, when you fund a special needs trust, you have to
set up a separate account, keep an accounting of that and make sure that the money is spent
on the person with has a disability. Parents ask me, “what exactly can I put into the special
needs trust that I’ve just set up for my son or daughter?” Well there are a lot of things
that we might look at leaving behind. We might have a home when we’re gone that we want to
leave to our children, retirement plans, they can be left to a special needs trust; investments;
savings accounts; those types of things. So as you’re working with professionals through
the legal side with an attorney, through the financial side with a special needs financial
planner, it’s important to make sure that you’re looking at all the different angles
and how this can be done. There’s no cookie cutter solution, and if there was this would be
real easy. The great thing is that families can come up with very concise plans. I would
strongly encourage parents doing this planning, please make sure you are inlcuding the person
with the disability who has a disability at the center of this planning process. The outcome
will be so much better. I think it would be wise decision as families are getting all
this information with the person they are planning for and trying to sort out working with someone
who is experiened in the legal side of this, with the estate planner. They often call themselves
elder law attorneys. They’re working with Medicaid and benefits and understand special needs
planing and special need trusts. Also working with financial professionals who understand
the financial side of this and how to put those things together, while an attorney can
draw up trusts, it’s important for families to realize once you have these documents which
are basically written instructions on how to deal with your estate when you’re gone,
that your assets actually talk to them. For example you go to work everyday and they give
you some type of benefit, a life insurance policy, retirement plan, you have to name
beneficiaries for those things. If the beneficiary is still listed a your son or daughter, and
you have a trust that says you want these to go to a special needs trust, they’re
not talking to one another. Beneficiary designation on a life insurance policy or retirement plan
they overide what your will or your trust would say. So much of financial planning is
confidential, you know no one wants to talk about their assets or their estate. This type
of planning is something that parents should be sharing with everyone. If you have a power
of attorney or you have a guardianhip, other people should know that. Especially if you
have a special needs trust, it’s important for other people to know that. This type of
planning is very different in that we tell people about it. We tell them we have a special
needs trust. I’m not asking how much you have. I’m not asking if you’re going to leave
anything to my daughter, but I’m saying that if you as a parent have this document let
people know because if their plan is they’d like to include your son or daugther in their
estate, this is the way they should look at doing it.
I strongly suggest that parent take a look at creating what’s called a Letter of Intent.
The Letter of Intent is not a legal document. The letter of intent is a document that describes
the entire day from in the morning do you wake up with a buzzer or the radio on the
alarm clock to what is the process of getting ready to get out of the house for that indivudial
when they’re going to work or going to school or doing something else during the day, the
medical issues that are in place, how do you help someone with certain medical issues during
the day, giving medication. But it’s also a lot of the quality of life stuff- this is
what we enjoy doing as a family and we want to makes sure that our son or daughter is still
included in those things if we’re not here to help facilitate those. The Letter of Intent
describes the waiting lists that we’re on. It describes maybe some of the medical things
that we’re looking at in the future. If I’m not here to tell someone to be reminded of
this, the letter of intent is a great way to do that. The letter of intent should be
shared not only with the person who said yes I will be there to be the next advocate in
line, but share it with other people. Don’t hide it away. If I’m no longer here, someone
needs to know where my letter of intent is. I need to review it with that person . We
talk in acronmyns OT, PT, speech, all these different things, we need to make sure as
we have our letter of intent created and we’re sharing it with other advocates they actually
understand what it is we’re trying to communicate to them. This is a document that should be
created with the person that it’s intended to help and should be updated whenever something
changes. In all these plans, keeping the person who has a disbaility at the table, at the
head of the table, in decision-making and understanding what all the options are is the best way to

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  • Reply Diann Caldwell December 16, 2013 at 10:50 pm

    Thank you to Nemours for continuing to be a leader in healthcare and source of information for families who have children with disabilities.  It was an honor to be included in this project.

  • Reply Diann Caldwell May 18, 2014 at 4:45 pm

    In addition to the info I discussed in this video, you can find more information on special needs planning at my web site at and on my YouTube channel.  

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