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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 lwa says that the next of kin can make the decision
in an emergency situation. And typically the next of kin order is a ***, followed by
a paernt and so if parents are worried about legal guardianship or power of attorney, it's
imporatnt to know that if theresa health surrogacy lwaw in your state, and en emergency happens,
that you will be able to make the medical decisions for your childin that moment based
on your state's health surrofacy law. Government benefits are sometimes really tricky
for people to understand and they are more copicated because they can be very different
for a child who has a diability versus an adult who has a disability. A lotof parents
think that everything will kind of continue status quo when our children become adults
when it come to those typse of benfits, but that's not exaactly the case. To qualify for
a needs-based government benefit, such as SSI which is Supplemntal Security Income,
that's a monthly income fom Scoial Sceuirty, and also Medicaid which is a health insurance
programfro adults with disabilities, you have to pass certain tests. Nt only do youhave
to have a disability, but you also can't have more than 42,000 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 arevlove around "well, as a parents
I'm planning on when I'm no longer here, leaving my estate if I have a *** to my sopuse 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 gfovenment 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 litle of
families could be to take a slook at what's called a special needs turst. A special needs
trust is a specialised legal documentthat 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 speacila needs trustis actually protected from being counted as an available resourcewhen
it comes to applying for govenrment benefits. Diferent 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 validin your state.
These trust laws can vary from state to state and actually benefit programs for people with
disabilities can vary from state to stae and even county to county. The money in a special
needs trust has to be spent sollely 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 governemnt benefits is not already providing. I look at government benefits as
providign basic needs, food and shelter. The special needs trust is a way to help enhance
the life of someone who has a disability. A speicla needs trust can pay for things that
the indivudla enjoys. You know the social types of thingsthat cost money to accomlish
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 accounitng
of that and make sure that the money is spent on theperson with has a disability. Parents
ask me, "what exactly can I put into the special needs trust? that Ive just set up for my son
or daughter?" Well there are a lot of thing sthat we might lok at leaving behind. We might
have a home when we're gone that we want to leave to our children, retirment plans, they
can be left to a spvial needs trust; investments; savings accounts; those types of things. So
as you're working with professionasl through the legal side with an attorney through the
financial side with a special needs financial planner, it's important to makessure 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 wouldbe real esy. 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 thin it would be
wise decision as families are getting all this information with th person they are planning
for and trying to sort out working with someone wh is experiened in the legal sideof this,
estately planer. They often call themselves elder law attorneys. Thy're working with Medicaid
and benefits and understand special needs planing and special need trusts. Also working
with fincnaical professionals who understand the fincnaial side of this and how to put
thos things together, while an attorney can draw up trusts, it'simportant for families
to ralize once you have these documentswhich are basically written instructions on how
to deal with your estate when you're gone, that your assests actually talk to them. For
example you go to work everyday adn they give you some typeof benefit, a life insurance
policy, retirement plan, you have to name beneficiaryies. for those things. If the beneficiarey
is still listed a your son or daughter, ye you have a trust that says you want these
to go to aspecial needs trust,,,,,,,,, they're not talking to one another. Benficiary designation
on a life insurane policy or retirment plan they ovveride what your will or your trust
would say. So much of fincial planning is confidential, you kno wno one wants to talk
about their assets or theor esteat. This type of planning is somthing that parentss 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 specia lneeds trust, it's imopratn
for other people to know that. This type of planning is very different in that we tell
people about it. We tel them we have a special needs trust. I'm asking how mch you have.
I'm not asking howif you're going to lave 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 state, this is the way they should look at
doin git. I strongly suggestthat parent take a look
at creating a what's called a Letter of Intent. The Letterof 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 whatis the process of 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 soeone with certain medical ossues 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 wwant
to makes ure that our son or daughter is still included in those things if we're not here
to help facilitate those. The Letter of Inent describes the waiting lists that we're on.
It dsecibres 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 perosn who said yes
I will be there to be the next advocare in line, but share it with other people don't
hide it away. If I'mn longer here, somoen needs to know where my letter of intent is.
I need to review it with that person . We talk in acronmymns OT.PT, speech, all these
different things, we need t makre sure as we have our letter of intent created and we're
sharing it with other advocates wthey actually understand what it is we're trying to communicate
to them. This si a document that should be created with the person that it's intended
to help and should be updated whenever something change. In all these plans, keeping the person
who has a sdisbaility at the table at the head of the tablein decision-kaking and undersantinds
what all the options areis thebest way to go.